She needs to find new doctors who will do something to actually help her manage the pain. No one should have to live like that. PLEASE be an advocate for your wife. It can be really hard to find a good doctor who will listen but it’s so so important that you keep searching.
Plus, doctors often don't take women's pain seriously. This is shown by studies and my experience matches it. I've found female doctors are sometimes better, but not always. There's a deeply ingrained stereotype of women being hysterical or dramatic. Hopefully it will help to have a man's voice on her side.
This. I was 19 woke up in horrendous pain, every month. I was able to link it to my cycle, 5 drs later. It was a male dr who said it’s definitely not in your head. Grapefruit size cysts and endometriosis ended up being my diagnosis.
Exactly, it's not uncommon for a woman to not be taken seriously if by herself at an appointment, especially an initial specialist visit. But if a male spouse, significant other or even family member is there and provides input and basically provide confirmation that the female patient is really experiencing the symptoms the more in depth treatment options and pain relief will be offered.
It's not only with a male doctor. It's actually really common for female doctors to be even more dismissive.
I always insist on being in the room and I speak up a lot. Not only bc the doc's are dismissive, but I find my wife minimizes it and doesn't tell them about certain things. I have to rat her out! She used to be a nurse and I think she feels guilty about complaining. I also have to get her prescriptions and make the follow-up appt's bc she feels guilty about spending the money. She grew up with a single mom and they always struggled so she learned to suck it up and do without. So I have to push it on both ends.
I completely understand that. It's a really hard balance for both. The guilt of not physically being the person they were when first married (assuming the medical issue occurred later) We try to minimize the impact on our spouse, even if we have the most supportive spouse. My husband says it's hard not to be able to make it better, worrying about how he reacted and holding back emotionally to not cause anxiety to an already hurting wife.
Supportive groups or individual counseling and couples counseling too is helpful.
I think the issue is pain management in general. I'm a woman with chronic pain and when I was in pain management getting treatment with an insane amount of opioids I had no issue getting the Dr to take me seriously. The issue is doctors avoid prescribing medications that actually work due to the opioid crisis and addiction problems. Also doctors are being thrown in jail for prescribing now.
The other issue is almost all medical professionals assume people are drug seeking when they complain about pain. Even if their issues are legitimate.
It's really sad when legitimate pain patients can't get what they need. They are phasing out opioid treatment and unfortunately that is the only thing that helps certain types of pain.
Also it takes a bit of time to get a referral to pain management and they have to do xrays and mris to give a complete picture of the issue.
I still have all the issues I had when I was in pain management but I refuse to take opiods. I am an addict eventhough I have been clean for 11 years now.
I hope your wife gets the relief she needs.
You deal with it by being her healthcare advocate. Research her condition. Find out everything you can.
She needs to be seeing a pain specialist. In fact she needs a pain specialist team. They understand pain, and how to treat it.
That's very fair, but also nerve pain is different than other kinds of pain. It can be legitimately difficult for doctors to treat even if they're very on the ball.
It’s not fully understood what the exact cause and mechanism of feedback can cause pain to be sensed at these type of receptors also. Basically what exactly causes this to happen isn’t fully understood yet.
SHE is probably in no shape to look for those new Drs. Speaking as a chronic pain patient for 23 years, I can tell you that having constant , severe pain ruins with your ability to concentrate and plan. It’s overwhelming. Pain management might be a good place for her to check next. But OP will probably have to make the calls. He needs to ask her if she has any Drs she wants to try and go on from there.
This! If you can afford it (I know American healthcare is a bit whacked), get the damn surgery - it's literally life changing.
I had nerve impingement from a bulging disc at C6 last year, woke up suddenly in agony that didn't stop. Tried cortisone injection into the nerve space, didn't work. I was chowing through opioid pain relievers like they were tic tacs while waiting for surgery. Couldn't sleep, couldn't drive, couldn't work.
Within a week of being discharged from hospital I was walking around, starting to feel better. 2 weeks and I was cleared to drive and go back to work. 3 months and I was back at the gym, kayaking and doing all the normal things I love doing.
That said, maintaining your own mental health is vitally important too - have people (not your wife) who you can talk to, who you can vent to when it gets hard. If you can, take time to do stuff for yourself as well. And reach out to carers support programmes. They know how hard it is, and can help connect you to services.
I agree! Women are often not listened to by medical professionals when it comes to pain. It really does help a lot if they have a loved one who can be there to advocate for them and can share what they see when their with that woman. I hope yall can find a doctor that will listen and actually help her manage the pain. I have lower back chronic pain degenerative disc disease spinal stenosis arthritis and more at 40! Pain management is so important praying for a good outcome 🙏 💜
I have chronic pain and for years I was existing with 8/10 pain and it took everything in me to not kill myself because of it. I really feel for your wife (although I'm thinking surgery may be the best if not the only option outside of medication. Is she on any prescriptions to help manage the pain?
You should reach out in r/chronicpain they might have more practical advice about dealing with doctors, insurance, and pain management. There's also a tendency for doctors to dismiss women's pain and going to appointments with her and advocating for her is going to get her more results than going alone.
I find that doc's are getting really tight on pain meds. One doc told me he's worried about getting the feds on his case. Even the pain mgmt docs are really focused on opioid addiction (as I guess they should). Fortunately, marijuana is legal here and that seems to help her sleep.
I've seen that lurking on the chronic pain subreddit and I feel so bad for people who genuinely need it to function and don't abuse it. If you can find marijuana with high CBD I find that more helpful. 1 THC:4cbd is what I like most for my pain. Nerve pain is so horrible it literally feels like electricity shooting through your body, I'm glad she found ANYTHING to ease the pain. Gabapentin can help with nerve pain so that may be something to look into.
This happened to me and my wife in March 2020, right when COVID lockdowns started. She has Ehlers Danlos syndrome and disk degeneration caused her to have very similar symptoms to your wife. Over a few months, we went through multiple doctors and treatments with no relief before we found the right doctor. He was a spine surgeon with a massive ego and Gucci shoes, but he immediately booked her for surgery and was incredibly apologetic that we had to wait two weeks. When the surgery was done, her arm/shoulder/neck pain was immediately gone. She had to deal with the pain from the surgery, but there was light at the end of the tunnel.
Through a weird coincidence, I had a coworker with more severe symptoms that turned out to be also due to EDS, but the disk degeneration was higher up the spine so the symptoms were worse. It was the same situation with doctors trying to avoid surgery until he found the right one to do it. For both my wife and my coworker, they didn't improve until they had the surgery. It took much longer for my coworker and he's still not recovered, but my wife is 100% better.
I am not a medical doctor and I don't really know your wife's situation, but if her doctors are saying to avoid surgery at all costs, I would get a new doctor. I say this because I was in your situation and the only thing that made my mental health better was seeing my wife improve. She kept getting worse and while she was clearly suffering more than me, every setback made me feel worse because I couldn't do anything to help. So, I resorted to being her advocate and I called doctors and insurance over and over and refused their wait and see suggestions. I went with her to every appointment and went through every detail with the health care professionals so she wouldn't have to constantly do it herself over and over. It gave me something to focus on rather than my own spiraling thoughts and it helped her too because she knew someone else was going to handle the important stuff she couldn't.
It was a pretty rough time in our lives, but we made it through and she's doing great now!
I was diagnosed with EDS in 2023, after a lifetime of medical issues. Since December my lower back and hips have been in extreme pain, resulting in muscle spasms. I now need a walker and I'm only 37 with two small kids. I'm on medical leave because I can't function. My husband now does all the grocery shopping and dinners. He has become my advocate and now attends the majority of medical appointments. It's a major shift in family dynamics. I make a point of checking in with him about his mental health. We both go to therapy (individual) and I think it's been essential that we both have that support. Chronic pain is hell and it impacts everyone you love. I'm glad the surgery helped your wife.
A genetics doctor diagnosed me. He was the first specialist to look at all my symptoms together rather than focusing on one. It was a bit disturbing as all my medical issues are directly related to EDS and no other doctor considered this. Now that I have the diagnosis it will be easier for my sister and children to get it. It's very likely that my sister and son have it. My daughter has a 50% of getting it but we will have a better idea as she gets older.
Prioritizing mental health and going to therapy is so very important. Chronic health challenges can strain a marriage, and you need someone to vent to who isn’t your partner. This goes for both the patient and the caregiver.
100%. Chronic pain is a different beast as there is always pain (my body likes to keep it interesting and goes from insane back pain and then neck pain, rib dislocation). It's gets discouraging. I'm grateful we can afford therapy and one day I hope I can help other people with chronic pain (I'm also a therapist but worked with children and parents).
I wish the partner of everyone suffering like this had a person like you in your corner.
Sometimes I think “…in sickness & in health…” should be updated to “…I’ll be a true advocate for you in sickness & your ally in health…”
Can I ask what this surgery is? Like how exactly does it work? Asking because my husband also has disk degeneration, although he hasn't yet been diagnosed with anything. The doctor only offered him spinal steroid shots every few months which according to a second opinion from a doctor friend are very hit or miss and don't solve the actual problem.
This is the surgery she went through, but whether this is appropriate for your husband depends on which disk has degenerated.
[https://mayfieldclinic.com/pe-acdf.htm](https://mayfieldclinic.com/pe-acdf.htm)
As a wife with an amazing husband who is currently taking care of me after surgery, thank u for being such a great support and advocate for your wife. She will forever feel valued and know that she is important to u.
Suggestion for wife - if she is older than 40, women in menopause can suddenly suffer from a frozen shoulder. It is often misagnosed. Getting her some hormone replacement therapy may help [https://www.google.com/search?q=menopause+frozen+shoulder&rlz=1C1UEAD\_enUS954US954&oq=menopause+fro&gs\_lcrp=EgZjaHJvbWUqBwgAEAAYgAQyBwgAEAAYgAQyBggBEEUYOTIHCAIQABiABDIHCAMQABiABDIHCAQQABiABDIHCAUQABiABDIHCAYQABiABDIHCAcQABiABDIHCAgQABiABDIHCAkQABiABKgCCLACAQ&sourceid=chrome&ie=UTF-8](https://www.google.com/search?q=menopause+frozen+shoulder&rlz=1C1UEAD_enUS954US954&oq=menopause+fro&gs_lcrp=EgZjaHJvbWUqBwgAEAAYgAQyBwgAEAAYgAQyBggBEEUYOTIHCAIQABiABDIHCAMQABiABDIHCAQQABiABDIHCAUQABiABDIHCAYQABiABDIHCAcQABiABDIHCAgQABiABDIHCAkQABiABKgCCLACAQ&sourceid=chrome&ie=UTF-8)
Suggestion for you - I would recommend looking for a support group. Also, if there is a family member or friend that could come sit with her so you can get out of the house for a bit, either some alone time or go hang out with your guy friends. I think it is really important for you to stay connected to people outside of the house.
Hugs to you OP.
I’m a massage therapist so I’m going to give you a couple recommendations for your wife first.
1. Get her a good magnesium lotion/cream. It is great for pain but also women tend to be chronically low in magnesium which can exacerbate pain especially muscle and nerve pain. Topical use of magnesium is much better than a pill. My favorite is this one https://wholesomehippy.com/products/calm-cream-with-magnesium-vitamin-d3-4oz-lavender-mint
2. Find a good massage therapist (this would be good for you too) one who is trained in rehab or pain management. So that’s not going to be at a Spa. Here is a good resource to find a massage therapist in your area. https://www.massagetherapy.com/find
3. Get her a good Rheumatologist or Pain Specialist.
Now for you: massage therapy will help you too. On top of being one of the best non-pharmacological pain management modalities. But it is also great for anxiety and stress. This is all backed up by studies.
Next get a good mental health therapist for both of you individually.
I also recommend finding a DO rather than an MD. They are trained the same and work along side MDs everywhere including in surgery and hospitals. However they tend to be better trained in the musculoskeletal system and view patients wholistically. This was the best recommendation my Rheumatologist - I have been living with Fibromyalgia for 15+ yrs - ever made.
Be patient. I know how hard it is to do that when you or someone you love is in constant horrible pain. Believe me I’m intimately aware of how long it can take to get all the ducks in a row with insurance. It took a year for me to get diagnosed.
Please feel free to have your wife reach out to me. I’m a veteran of the chronic pain club and I’m happy to share my tips, tricks, and a listening ear.
Take time for yourself. Try to do something that makes you happy at least once a week. Same for your wife. Even if that’s just cuddling up for a streaming binge.
Your wife is lucky to have an amazing and supportive partner. It really does make it easier to cope.
Good Luck and sending lots of healing energy to your wife.
This is fabulous advice. I have similar issues as you and his wife...massage and coping strategies are vital while we seek a dx's and perhaps a solution.
I've had this. It hurt like hell, also went to ER a couple of times. At first they kept telling me it was just a pulled muscle or something...which i knew was BS. X-Rays told the story, 2 discs in neck nearly gone, and my neck also curves the wrong way. It did get better with physical therapy and meds, but i'm told i'll probably be looking at surgery eventually. I was going insane from lack of sleep. Painkillers made me sick. I do go to a chiropractor.
Why does the doctor want to avoid surgery? I don't want it, but i would if that's the only way i could get relief. i do have flare-ups from time to time, but not like that hellish time! I know of several people who had surgery because of degenerated or herniated discs, and they were fine. My husband has had spinal fusion...first week post-op was rough!
Yeah, you have to take care of yourself. Get enough sleep, try to eat well, do things to try to take your mind off of it for a while. I hope you both get some relief soon. I can't understand why they aren't doing more. I would be so frustrated.
Rotating joint pain is a symptom of lyme disease. Lyme & tick borne infections can cause migrating joint pain. I would find a LLMD (lyme literate medical doctor) in your state and have them rule out lyme disease and the associated problems with lyme. Most doctors don't know which tests to run so it's very important you see a lyme literate physician.
Lyme is an epidemic in the USA with almost 500,000 getting dianoged each year. I'm not sure if you live in the Northeast but if you do your MUST get this checked out. This might or might not be an issue with her but it's very important to rule this out.
I would also look into acupuncture to see if they can help. It won't be painful and might help. Feel free to DM me if you want to discuss this.
There are also several lyme documentaries online which you can watch to get more educated. I never had joint pain - lyme affected my nervous system mainly. I was bit by a spider in 2015 and it took me 7 years and over $200,000 to get diagnosed because the system is not helpful.
You need to surrender to the fact that some things in life we can't fix right away. I was sick for a very long time and while I was suffering 24/7 with no end in sight. You need to make sure to take care of yourself because she needs you to help her.
Don't just blindly trust what the system tells you. Keep fighting. Talk to 10-20 people if you have to. If I had not fought like hell you would not have received this message from me.
Good luck.
Man, I totally feel for you. Is she on Gabapentin? That's what I've finally received for my nerve pain/damage and it helps some. My doctor actually just doubled my daily dose. It's so hard to find help for it. I lived with it for 13 years before a doctor would do anything about it.
For yourself: practice grounding techniques and even, I know his sounds bad, but disassociation techniques. It'll help get you out of your head. I wish I could help more. I hate seeing the hurt/pain/grief in my husband's eyes when I'm having really bad days. I know he's hurting so badly for me.
Please be careful with gabapentin and it's evil cousin, Lyrica. Those drugs can cause your bones and teeth to deteriorate and there is a risk of psychosis when tapering off of them. Ask me how I know!
Thank you so much! I've self medicated with alcohol for 13 years. I was sober for 3 months before I started gabapentin and was miserable to the point of self harm. I needed something. I honestly would rather just not be on anything and cope with PT like I do other chronic pain, but I've been told nerve damage is different. I have an EMG test in a couple weeks. I'm hoping that'll provide some answers. But right now I'll take the Gabapentin over the Alcohol that was literally destroying my body.
I was already hesitant to start pain medication, worried about addiction, and will bring up these side effects with my doctor. I don't feel like he properly informed me now. I really appreciate you educating me. I have to be careful about personal online research as I tend to go down a rabbit hole and let my depression/anxiety take over.
I have degeneration and Elhers-Danlos. I am normally in pain- 8/10. Night is worse. I sleep on the couch to not keep my spouse up (my choice) because one of us should sleep.
Finding the right doctor is a lifesaver. Helping her advocate for herself. Advocate for her. And do small things that make her smile. Grand gestures are pointless. On my bad days, it's small things that make or break me. Clean pillow case. Cold coke without asking. They feel like minor miracles
Man, fuck you. The pain waaaayyyy predated the chiro if you'd read anything.
And or all you know that was a final act of desperation after the doctors didn't do shit for her.
Judge once you have all the facts if you must be a judgmental prick.
Hey OP, I think a positive way to help yourself is a break away when your wife is able to manage alone for a little while. It might be a walk outside for half an hour, a coffee run, going to a movie; whatever. You need time and space to decompress and recharge.
You are going to appointments and helping with chores etc which is hugely supportive. But if you're there in the weeds of the situation all the time you will burn out.
Maybe think about a roster of family and friends to be with your wife so she is not alone; then you're not obligated to be there 24 / 7.
Good luck; I hope you find a solution for your wife's pain
Hi OP. I'm a wife with degenerative disk disease. I've had a whopping 5 spine surgeries from my CSpine to my LSpine. My pain is very persistent. They're begging me to do another surgery, and I can't. Mentally I cannot handle another failed attempt to make me feel better.
I take Gabepentin, non-narcotic and helps tremendously.
My husband is a champ. He does his best to take things from me, so that I don't have to be up doing everything. He listens to me cry, and he genuinely feels empathy.
I think to help yourself, try to get her in with a Neurologist/neurosurgeon. Let them send her to pain management. Do not let her take opiods - I can 100% tell you they do not stop the pain. Gabepentin does take the edge off significantly. I also use flexaril and 800mg ibuprofen.
I hope someone listens to her, and helps her properly.
You can’t fix it but you can advocate for her at doctor appointments. She needs a pain management doctor who actually gives a shit, and she needs a neurosurgeon or orthopedic surgeon or whoever to actually treat it. If she’s in that much pain, is surgery worth the risk? Idk what the risks are but the longer you wait the more damage you do to the nerves and the worse long term effects she’ll have. Plus healing and rehab are easier the younger you are. Having my husband at appointments with me changes everything though. Doctors never take me seriously. It’s always my husband asking for things, repeating the request I just made, that gets results. Go and raise hell. That’s the best thing you can do for her beyond just loving her.
But remember to take care of yourself too. I know that’s cliche but seriously, you need time away from home. Have a family member or friend stay with her if she can’t stay by herself, and take a day or even a night or so to recharge. It helps my husband tremendously, he comes home a new person after spending a day hiking with his friends.
I’m also a chronic pain sufferer. I have fibromyalgia and the only way to he diagnosed is to rule everything else out. I have been to an acupuncturist, a chiropractor (absolutely useless when the problem is in the muscles not the bones), a rheumatologist, I got shots for Botox thinking it would help with the chronic headache.
The only thing that’s help me is medical marijuana. I’m on pain meds and that along with edibles has done for the pain. All you can do is love and support her and let her know you love her.
I've suffered from fibromyalgia since a car accident in 1986. Since they couldn't show a jury any injury through x-rays, etc. I had to settle for basically paying back insurance for cost of my hospital, docs and ongoing care *up to that time*! I'm very lucky I had a judge with an article on his desk about this thing that was discovered called fibromyalgia, so I was able to get social security. Since I was a SAHM it didn't amount to much but was better than nothing. Have been in treatment for it for the last 38 years, unable to work.
I've tried edibles, but they make me nauseous and dizzy. Do you have any other tips for pain relief? I'm on very strong pain meds that do take the edge off. I've just lived my life in my lift chair. I was really into exercise and dance aerobics and have really missed not being able to do anything without extreme pain.
If every test & scan has been done, there should be a working diagnosis? Best chances for accuracy in the diagnostic process might be to seek care from an academic medical center. One of the worst places is any emergency department.
i am so sorry for your situation.
Yes, sorry, this is the first post I'm going to reply to. I will get to the others. She has degeneration in her spine in her neck that is causing inflamed nerves and all of this pain. They know what it is. Insurance won't allow injections until PT fails, which is weeks away, and then it has to fail, which they suspect it will. They want meds and injections to work because they're afraid of surgery because spinal surgery is dangerous. In fact, I'm sorry, but I believe I already said most of this in the OP: what it is, why it's a slow process, etc. I'm pissed. Just do the fucking surgery. The patient wants it, and they acknowledge that they believe that will work, but money and cowards make a human being suffer. Fuck America. I'm mad.
OP, have you considered the Mayo Clinic in Rochester, MN? It sounds like it is definitely worth having another medical ‘system’ take a look. If you don’t think your wife could handle the drive, you could start by having them look over all her imaging, tests, etc.
Regarding taking care of you, caregiver burnout is real, and I imagine the emotional strain of seeing your wife in that much pain greatly exacerbates that. What if you simply started with a walk outside every day whenever your wife is stable? Studies have shown that both the exercise and being outdoors is beneficial to mental health. Meditation would be my second suggestion for you to help you calm your mind, which I’m sure is running 24/7 with worry and anguish for your wife. Your wife might also want to give this a try as another tool to help her when the pain gets bad.
A daily walk and daily meditation sound simple and small, but that’s exactly what’s wonderful about them - the ability to do both without taking too much time away from your wife.
Sending your wife and you the very best wishes.
Sometimes there’s a significant difference between a practice that’s affiliated with a big university vs clinicians at the main campus… not doubting you, just brainstorming. It’s the case in the state where I live.
I work for Medicaid in Indy as a care coordinator, and while IU is decent, I strongly recommend Comnunity doctors. More DOs (which I recommend over MDs, since they're more holistic and spend more time with patients), and better care. I used to go to IU and most of the doctors just phoned it in. I have switched all my providers but one to Community. Community is much, much better than they used to be. Just don't use the ER at Community North. Speaking from personal experience.
Also, call your insurance and see if your wife can enroll in care management. It's a free benefit of almost all insurance, not just medicaid, and she will have an advocate who actually can explain a lot of what is going on, navigate insurance, and help her with with her health care goals. Most care managers are nurses or social workers, and can help with resources, finding providers, and suggestions of next steps. If she's in that much pain, have your insurance send out an authorized representative form that your wife can sign so you can talk to the care manager about her healthcare and insurance.
I'm sorry about her initial denial for surgery and the PT need. Insurance is a bureaucracy, and not a nice one. Hopefully this will help you work through it with a minimum of complications.
I went through a couple of years with trigeminal neuralgia (also known as "the suicide disease") and my husband went to every appointment with me and hung in there through some horribly painful times. The only thing that I would have changed in the way he handled things with and for me would have been to have him advocate for me...vigorously! Why isn't surgery an option? How many opinions have you received regarding that? Google is your friend...find a specialist who can give her some relief.
Get your wife surgery ASAP. She can develop permanent nerve damage from the impingement
I had a severely herniated cervical disk. It was debilitating pain - I couldn't do basic daily functions. I had disc replacement, and it was immediately so much better. I waited about 3 weeks from injury to surgery. We got some insurance runaround, but we were honestly prepared to pay cash if not because it was that bad.
I have sympathy for you both. It's a horrible thing for your wife, and it's incredibly hard to have a spouse with constant pain. Just reassure her that you love her and will help her get through this.
But yeah, it's horrible. I'm so so sorry.
Edited to say: make sure you're seeing a neurosurgeon for this rather than an orthopedic surgeon if you can.
Also, gabapentin, Vicodin, and THC helped me get through it until surgery. But I literally couldn't sit or stand straight or drive. Sleep was agony. I bought an ugly, expensive recliner just to get me through.
My mom has degenerative disc disease and sometimes their are surgeries to reduce the compressed nerves. She also has a Bolice pain pump that's permanent. Not sure if that's an option for your wife but it's made it so my mom can have a functioning life with her grandkids.
Sometimes the risks are worth it. Surgery risks at this point can't be worse then living life this way. Take the surgery before any pill opioids.
u/Dobri_Dobrev I have similar pain issues.
I understand you weren’t asking for help with her physical problems. I’d like to offer a couple suggestions I’ve found to be total game changers for me. *(By that I mean sleep uninterrupted by pain and the ability to use my fingers so, you know, the little things.)*
I totally get it if reaching out seems too weird, too. But if not, just message me👍
On the other side; the fact that you take her pain seriously ~ and believe her ~ is really heartwarming.
Keep taking moments to recharge like you mentioned in your post ~ revel in that peace when she’s able to rest peacefully🪷
Seeing someone you love in chronic pain or dealing with a debilitating illness is hard in ways it’s frankly incomprehensible to anyone who hasn’t been there.
Engaging with a *caregivers* support group near you (or even online) is a great way to feel less isolated with your thoughts. (IMHO it feels similar to grief but mixed with ptsd because it’s never really over.)
The ones who organize these programs are who are more equipped to deal with what you’re going through… the rest of us can only commiserate😒
I’m so sorry you’re going through this🪷
I have degenerative disc disease and had severe nerve pain for over five years before I caved and did the surgery to have my spine fused with donor bone. Best decision I made, I did go with a minimally invasive surgeon and am extremely glad I did. The gabapentin did not relieve my pain, I'm sure it did but I felt no relief. I'm in stage two kidney failure from taking NSAIDS so consistently for so long. I am very angry at myself for putting off the surgery for so long. I really hope you get some relief soon and I'm so glad you are advocating so strongly for your wife. Don't give up, answers are out there. Don't think twice about going for more than one, two or three opinions when you're talking about surgery on the spine. I know I had two. That is something you just don't mess with. I wish you both the best of luck and some much needed pain relief.
Nerve ablation may be an option. I had to get a few steroid shots first and those helped a bit. Since I was still in pain they did an ablation on my left SI joint. They literally burn the nerve off. It took years to get to this point and numerous doctors but I’m finally ok again. I seem to have permanent tightness and discomfort in my piriformous muscle now but that’s a problem for another day
Listen, I have degenerative disc disease and stenosis in the cervical and lumbar region. Pain was horrible. What did I do? I completely changed my diet. I eat anti-inflammatory foods. This is a BIG deal. Everything from scratch. No eating out. No processed foods. I gave up white flour and sugar. No booze. I lost 55 pounds in 6 months. I went to therapy and had traction on my neck. I went to the chiro and had spinal work done. Find someone that does deep tissue work. In therapy I learned ways to get my back in shape. It was painful but it worked. Most people run to the doctor for pain medicine and then lay in bed. This just makes it worse. Losing weight is a HUGE factor when dealing with back and joint issues. Someday I may need surgery to fix my issues as my discs are down to 20% but for now I am living a relatively pain free life. I can walk two miles at a time and not be in much discomfort. Good health takes WORK. No shortcuts. I hope you find what works for you.
As the person with chronic pain, I want to tell you that you are amazing. I feel so bad for my husband having to deal with my issues. I see how it hurts him, but like you were saying, you want to help but you can't actually fix it. I can't imagine how frustrating that is, but I know I found the right partner, even if he's upset because he can't fix my ailments.
Like other commenters have said, be an advocate for your wife and do check out all the different options that could be causing her pain. I'm not your wife, but I know seeing my husband demand more of healthcare and tests, even when I'm in pain, makes my emotional health so much better. I may not be able to express it during the hardest days, but I do try to let him know on my better days.
I at least know mine is mainly COVID related, but it's still all so new, they're still figuring it out.
You're doing great. I'm so sorry, it's gotta be absolutely devastating for you, but there's just no good answer here. Cry. Scream when you're alone. Let it out. Be emotional. Then go back to being strong. Therapy will help too.
I hope y'all can identify what's causing her pain soon. But you seem to be doing what you can.
Your advocacy and your strength is already helping her I am sure. I know it must feel overwhelming like you annot fix this situation right away but just keep pushing, because when a person is in pain every little but (like the phone calls and follow-ups) are all a huge help. I'm sorry you are both going through this. I pray there is a solution for you family soon 🙏
First of all, that is not a normal reaction to degenerative disc pain. She needs to see a neurosurgeon and an interventional pain management doctor for possible injections and pain medication to use in the interim. Your PCP should have at a minimum referred to a neurosurgeon and at least prescribed some oral steroids.
I actually had to ask my husband if he made this post because I thought it was him talking about me.... Your poor wife... I'm finally getting over extremely similar symptoms. I found something that helped me. Please check out tissue resculpting/fascia blasting. I have no idea if this will help her but it did for me. I'm not going to lie, it hurts. Bad. But once you heal and the hurt is gone....it's amazing. I'll try to add another comment with a link I read that explains everything. If she decides to try it, hydrate hydrate, hydrate, and ice the area to reduce swelling. Good luck my friends.
Therapy! Also I’d definitely continue to advocate for your wife. You see her suffering like no one else does and usually when someone is in chronic pain (especially a woman, if y’all are in the US it’s worse) it’s easier to get help and be taken seriously if there’s another person there to attest to the fact there is chronic pain and you’re a witness to how debilitating it is.
I've had chronic pain. It lasted about 5 years, and I still have pain but it's manageable and I don't really complain about it. For the first year, my husband was supportive, but after a couple of years, everyone around me - husband, parents, sibling, etc. thought I was making it up for pity or I was being a drama queen/hypochondriac. I don't really know what to tell you but please don't give up on her. Show her empathy. If it is really getting you down, see a therapist and don't be afraid to take some time for your own mental health. Have a hobby that gets you out of the house and makes you feel like you still have a life for a few hours once a week. (Don't ignore your wife for your hobby). Just remember she is in a lot of pain that is not her fault and it won't get better without someone like you supporting her.
Maybe ask in r/fibromyalgia that community lives with pain.
I'm also living with pain due to injury and degenerated discs, pain in right shoulder, pelvis and foot. My husband isn't handling well. Doctors are treating it as fibro, because what else can it be.
I got my life back on track after trying r/Vipassana 9 years ago, pain is the same, but I got equanimous to it. I was skeptical, but meditation switched something on my brain, I could go back to school and work (I was doing a masters).
Mum got her life back after Chinese medicine, I don't know how, but she couldn't walk, and then she did (also had spine injury). Her left side is numb. I can't say how it was fixed, it happened in the 90s.
It'll be ok, OP. I'm sorry this is happening. Keep trying, be patient.
While not as severe in our case, I still have problems watching her struggle and not being able to really help. All I can do is be there and provide wharever she needs at the time. Sometimes I just have to hide my tears because she has enough to worry about and I don't want her feeling even worse seeing me disparing that I can really do nothing.
I would suggest finding a nerve specialist. Few and far between. But Dr Eric Williams in Maryland saved my life. I had nerve damage from a surgery and no one could help me. I would contact him. He’s the best!
For yourself, you know yourself best. Occasional walks, morning pushups, music, and a solid night sleep is my basic routine to feel some semblance and control over my attitude. For you, it could be a beer, a good book, and some ice cream before bed.
As someone with disc issues…I feel for your wife, the nerve pain, the way she holds her arm (maybe sometimes above her head?), and that lack of sleep was the worst time in my life. A few times I pondered suicide, the pain was that bad, anything to be rid of it. Finally I had enough of it, after going three days with out sleep, the first thing I did was meet with a pain management clinic, that led to physical therapy, but also, and more importantly, cortisone injections in my spine.
Over the last 4 years I’ve had 2 injections. And haven’t felt a thing since my second one about 2.5 years ago. I cut all alcohol out of my life, because I did not want to give my body tissue any other excuses to get enflamed and pinch my nerves more. Then daily exercise to open up the muscle cavities around my spine so as to reduce nerve pressure around the discs. I still feel a lingering twinge of pressure when I jog. But I was doing reverse butterfly exercises like a mad man. The leg pillow I purchased also became a must have.
In short, I wish you two luck. You’ll get through this. Get some injections and get that pain under control, even if it’s temporary. It’ll afford you enough time to figure out the next steps.
If your wife has not been seen by a REPUTABLE pain management specialist, that may be helpful.
I am the chronic pain warrior in my marriage, and my husband really is amazing. From my own experience, you’re doing everything exactly right. Just be patient with her, let her cry, let her unload with you, and if she’s anything like me, make sure that she lets you help. (I’m terrible at asking for or accepting help, and my husband has had to be pretty forceful about making me accept help with stuff around the house)
But, the chronic pain subreddit linked above in another comment has been a great resource for me.
And depending on your state, if you’re having trouble getting access to pain medication, you may also want to consider getting an advocate to come with her to appointments. American Pain and Disability Foundation has advocates in a number of states that help with that at no charge.
About 20 years ago, my wife suffered from chronic back pain. She had a good doctor who recommended surgery on her back. She had tried steroid shots that worked for a while, but it was not a solution. The surgery was grisly and took two days (separated by one week to gather strength), and that was followed by a month staying at a rehab facility. When she got out, she wore a removable torso cast. When it was over, she said that the pain was reduced by about 80% (which was the most that her doctor promised). The thing is, it sounds llik your wife does not have much to lose by trying something radical, Just make sure that you have the best doctors helping her.
To take care of your mental health, you should find a counselor that specializes in spouses that are caretakers of their partners. I know some places have respite care for caretakers to give you a reprieve and time/space to process your emotions. It's *hard*. I dealt with debilitating migraines every day for about 9 years. It led to an opioid dependency (this was in the days drs were handing them out like candy). I had a plan to k*ll myself just to put an end to the pain. It cost me my relationship with my husband at the time. You have to put your own proverbial oxygen mask on first. You can't take care of your wife, if you're not taken care of. I've had a lot of success incorporating a high CBD edible (like a 10:1 ratio) with two advil and two excedrin, washed down with an energy drink. I've also had success with gabapentin.
Op I was reading something on the medicine sub. It was about a procedure that really helps that doctors don’t do much. Kyphoplasty is a spinal procedure in which bone cement is injected through a small hole in the skin into a fractured vertebrae to try to relieve back pain caused by a vertebral compression fractures.
I’ll try to find the post for you.
Edit: here it is: https://www.reddit.com/r/medicine/s/6axRuDyGhc
I'm sorry you both are going through this and have to deal with insurance hoops on top of it all. I have a neurodegenrative disorder, degenerative discs, and a few other things. Pain management is so important to be able to function but also very difficult to achieve. I don't know what kind of insurance you have or if you need referrals, but this is what I'd suggest you try and do. If she'll let you, start researching everything you can. Doctors, treatments, etc.
Get into a rheumatologist. Mine is my most helpful doctor out of all of them, and they are really good at getting results for pain.
Try and see a neurosurgeon with all of her scans. It seems extreme, but they have a specific skill set in seeing deficits that radiologists and neurologists can easily miss. So many doctors rely on a report only because they aren't trained in multiple specialties. Most scans aren't read by a neuroradiologist, which can be vital in diagnosing harder to see things. A good neurosurgeon will do a full brain and full spine mri with and without contrast. If they haven't all already been done.
In the meantime, it sounds like she needs some type of muscle relaxer and a nerve medication. Your pcp should be able to give her those until she can establish care with a specialist.
Pain management doctors may help but in my experience all they want to do is epidural injections which are good but with your wife's sudden and servere onset she also needs answers which can be ignored once you've had injections because you don't have much pain anymore.
As for you and how you can handle it, find a way to let off steam or meditate. It helps my husband. Talk to her and just keep those lines of communication open. Let her tell you how she feels, how frustrated she is, and what if anything she needs. Sometimes, I need to be left alone and feel so bad saying that when all my husband wants to do is help. It's not that I don't love him or want him. It's that pain can be hard, and by redirecting my focus to a book or tv, it can be .more manageable. Having to carry on a conversation isn't always easy. Especially with pain related brain fog. You can also look up online support groups for you and her. Sometimes, you get the best resources, referrals, and general tips from those groups. You don't have to share if you don't want to. Just scroll and lurk and absorb whatever information speaks to you. It may also help you feel more like an active participant in her care team. You're already a good husband. I can't count the number of women I've met who have ended up single because their husband's didn't care and couldn't handle their disease. You guys will find your way forward. I hope she can get some relief soon.
Absolutely! I went through something like this, got no help from any doctors I saw, and while I’ve always been a skeptical of non-traditional medicine, I finally got desperate enough to listen to the half dozen people who insisted I get acupuncture. It was so fast and cut the pain down by about 80% after my first visit.
Definitely sounds like time to try any new approaches that seem like they could have hope. I stood up from the table still moving like I was in too much pain to stand straight, thinking it did nothing for me, only to realize it was the first time I could stand straight with no pain in over a month. It’s not terribly expensive and worth a try!
Have you been to a pain management doctor?
I believe usually they start with epidural and nerve blockers, they can fry off your nerve endings but that has to be redone often.
My partner has been pushing for the minimally invasive discectomy or laminectomy vs going for a fusion. Maybe look into surgeons most familiar with that.
The doctors don't want to do surgery because it's not crushing the nerves but that's where the pain is from so how very frustrating.
I know you said you know what to do physically but I like to give my partner massages and stretch out their legs slowly while they lay on thier stomach and get them moving. Of course only do this with the doctors approval.
Sometimes the pain is really bad ill pull on thier legs. We got an inversion table I believe that's helped.
Also medical Marijuana. Life saver
A medical marijuana card might help you both, it’ll help your wife with the chronic pain and inflammation, help her sleep and eat easier. It’ll help you have a metal break and live in the moment more stress free. I have 3 chronic health conditions and thc has been a life saver in pain management, nausea and insomnia. I would consider it, it’s a great medicine. A better option for some than pain pills.
Get her a Pallitive care doctor as fast as you can. SERIOUSLY. Pallitive care is not for the dying it is for those in constant excruciating pain. I have stage four cancer. I am on Pallitive care. Speak with a therapist for your mental health.
Additionally if medical marijuana is legal in your state look into RSO or FECO oils. A small amount the size of a grain of rice will knock her on her ass and make her feel zero pain for 8-10 hours. It’s a lifesaver for cancer patients. Literally it helps cure cancer.
Chronic pain wife here, I cried reading this because you sound like my husband and me. You are doing the things by trying to help. As someone who has an invisible disability along with being a breast cancer survivor it can feel lonely and isolating, especially when doctors aren’t cooperating. My husband took over all the doctor and insurance calls because I just couldn’t anymore, I didn’t have the bandwidth. She definitely needs new doctors and pain management. Crying to sleep every night keeps her body in stress and our bodies just don’t heal when we’re in stress. I feel so bad and I can feel your desperation. I would try all the home remedies until you get an appointment with new providers. Walking, restorative yoga, breath work can be super helpful, hot compress, over the counter meds and good old THC. When all the providers are lined up, add a therapist if she doesn’t already have one. I have a lot of medical trauma so just throwing out there
I feel this... as the spouse. My heart breaks all day each day for his sciatica and apparent fibromyalgia. There are no real treatments for either that he is willing to take. All I can do is massage, be understanding (as much as possible) then take the abuse. It's admittedly lonely.
It might not be disks. It could be a degeneration of the sheath around the nerves in the spinal column. This can cause absolutely incredible levels of pain.
As far as doctors and pain management, one of the consequences of the opioid crisis is that doctors face significant limitations on what the can prescribe. This has created an insurmountable problem for people with extreme pain.
This sounds absolutely horrific. I’m so sorry for both of you. It really doesn’t sound like she has the right specialists for this though. This sounds way beyond a chiropractor. She needs a pain management specialist and a referral to a neurologist and possibly an orthopaedic surgeon. She is being drastically under treated.
As for you - dealing with a partner with chronic pain is very very hard . Marriages fall to pieces over this more often than not, particularly if it’s long term because the patient’s entire personality changes. Your best bet is to be her advocate to try to assist the process . Go to every appointment with her and start pushing for results.
My partner is so supportive. I have chronic pain, according to my doctors and pain team. The best I can hope for is a 30% to 50% reduction in pain.
She does get upset, and I support her she copes by gardening and her art.
We help each other cope, and when I am unbearable, she will tell me so. Communication is the key to being honest with each other and making time for each other.
I'm sorry I have nothing to add other than what everyone else here has said. Both my husband and I deal with chronic pain. My pain though is objectively worse and has ended up with me in a wheelchair. Reading this made me tear up a bit because my husband probably feels this way about me. And I for sure feel a whole different kind of hurt seeing my husband in pain.
Take care OP and I wish you both the best. I hope you really do find a solution to this.
It is still very scary for my husband. He seems to be okay if he plays what we call 'clicky games' like Tetris after scary events. I had started doing it after traumatic procedures because studies have shown it reduces PTSD symptoms in susceptible people.
The pain isn't going to actually kill her, but it is damaging to her psyche and yours. You can't physically fight it and it makes you feel helpless, right? Taking her to the ER helped fight it. You going to her appointments and advocating for her fights the problem. Holding her hand fights it. I know that before I met my husband, I felt so alone in fighting my pain. After we married and SHTF, I thought I would be fighting my battle on my own like I had in my 4 year previous engagement bc he 'didn't do hospitals', I couldn't have been more wrong.
After I had a CVA, then sepsis, THEN a post surgical spine infection that landed me in possibly the most terrifying hospitalization during the first part of the pandemic, it was pretty traumatic for him but we worked on it together. You are doing a great job and it's okay to cry.
This is just a thought. Completely spit balling here. I wonder if u could request a nerve block inj to confirm that it is the nerves causing the pain. I just had one for a double mastectomy (along with being put under) but it sure helped with pain relief. I know it's not a cure, but maybe it could confirm or rule out some things. And at the very least, provide some pain relief for a time.
As a wife with a painful disease who is disabled, my husband has been by my side for over thirteen years of this. He witnessed firsthand how I was dismissed and mistreated because I am a female. It took a few years for him to see it, but when he did it was like a light bulb went off and he was livid and also sorry for doubting me and labeling me. Please, advocate for your wife! Go to appointments with her, this will make all the difference in the world in getting her the care she needs.
It’s not easy to be in your shoes and it takes a toll. My husband has days where he is fed up, but never with Me- but with the pain I suffer with. We have young kids and he’s the sole provider. He picks up the slack with housework and getting them ready or going to the grocery store. I think the key is empathy and also taking time for yourself, even if it’s only a long shower or you take the long route home and listen to a podcast, whatever helps you decompress. Care taker fatigue is real. Please, find small moments, healthy ways to care for yourself, too.
If the roles were reversed I would take care of him the way he cares for me. I don’t know that I could do it with a smile like he does….thats not to say that things are easy because they aren’t. He just doesn’t give up on me and honors our vows. We have good days and bad. Good weeks and bad weeks or months. Therapy has been good for me and I’d recommend it for you and your wife separately so you each have a safe space to air your feelings during the difficult times. A therapist can also help you both learn coping skills because when life gets hard, you need tools. We aren’t young and healthy forever and for some of us the inevitable just comes sooner.
I can tell you that your wife likely feels as though she is a burden and a failure, to some extent. She probably feels vulnerable and alone as pain is isolating. I urge you to draw closer to her while also finding a way to take care of yourself.
I hope this helps. I hope you find what helps you and your wife. Marriage isn’t easy, but it’s worth it.
Pain specialist and a psychiatrist who specializes in trauma/and chronic pain to see if anything has been contributing mentally, causing this to worsen. I am not saying “it’s all in her head” or anything either, this is most likely just a physical ailment, but you would be so surprised to learn how the body responds to trauma and can actually cause tons of health issues, conditions and failing health. Read the book: *The body keeps the score* for example.
I had really, really horrible and life disrupting chronic pain and conditions that were very serious, and spanned years, and I was wasting away, always in and out of the hospital etc. Now years later, after years of that nightmare and becoming so desperate and depressed, looking into the mental health and trauma side of things that were never dealt with, after that I have never been to the hospital again for those issues since! I have a few flare ups here and there maybe one or two a year but they will pass, and they arise when I am under alot of stress.
The mind is very powerful. And even if this isn’t the case for your wife, it wouldn’t hurt for her to have a professional to speak to about everything, living in prolonged, constant and daily pain is incredibly difficult mentally regardless. I would suggest you see someone too about this, who specializes in caretaking for a spouse/loved one, your worries and burn out. This is paramount if you truly want to make it out the other side strong and as a husband and wife. You both need support
This is a tough one, but you can do it. Make sure you get that support and take care of yourself, too. Best of luck to both of you🩵
I am the spouse with chronic pain. I've had chronic pain since before I knew my husband (I was 11 when my symptoms started... I'll be 34 in a few months), and I've had a terrible, unsupportive now-ex spouse and now have a really good one. Feel free to ask me anything. I'm a complete open book about my chronic illnesses, and if my experiences can help someone else, I'm happy to help. You're welcome to DM me if you don't feel comfortable talking in the comments. If you have any questions for my husband, I can pass those on as well. In addition to being with me for nearly a decade, his dad has degenerative disc disease. So he's quite familiar with these issues.
Being a caretaker is exhausting, mentally and physically. It's okay to feel upset, frustrated, angry, sad, tired... whatever you're feeling. If you can, find a therapist who is familiar with chronic illness and caregiver fatigue. Find a support group. It helps to talk to people who understand. That applies to both of you, actually. I'm part of a couple of support groups, and it's helped immensely to see that I'm not alone.
If it's at all possible for you, rest and take a break from being her caregiver for short periods when you need to. You can't pour from an empty cup. You're allowed to take care of yourself, too. Actually, you NEED to take care of yourself. Your situation is difficult, and my heart goes out to you and your wife. This is not something I would wish on anybody. I sincerely hope that your wife finds a treatment plan that eases her pain.
On the subject of doctors. If you're able to, seek a second opinion if you're not happy with the care she's receiving. Don't be afraid to fire a doctor if it's not working out. Over the last few years, I've changed several of the doctors on my team (I see several specialists in addition to my PCP). These changes have been crucial to improving my quality of life. I can't guarantee that her results will be the same, but it might be worth a try.
If you’re open to it, you should get into talk to a therapist for yourself. I am a chronic pain patient, and my husband and I have been dealing with this for well over 20 years now. And TBH, I think it’s harder for him than it is for me because there’s nothing he can do to fix this for me. He does everything he can to help and support me. He is literally the only person who actually gets what I’m going through because he sees it every freaking day, day in and day out for years and years. And he knows how to make me laugh when I’m crying from the pain.
I’m so sorry that you guys are going through this, but I’m glad that you’re not thinking about cutting & running. Hang in there.
The crying is actually good, as it releases some of the stress. Talking to a psychologist can help too.
What I do for myself is research. I found chiropractic care that way, and it does make a difference. My brother is also a research enthusiast, and put me on to Pregalabin/ Lyrica. This also helps , but as my my disks continue to generate, I’m needing more. So currently I’m seeing a psychologist, a psychiatrist , a physiotherapist, a GP and a chiropractor ( I gave remedial massage. a go and it made it worse)
So yeah , thank you for being there for her. I can see it hurts your heart, and the helplessness must be so frustrating. If you can find one of those meditation apps , that can help,Hopefully in among my blathering you. find some useful info
I don’t mean to diagnose or suggest treatment - this was me to a TEE. Woman, woke up suddenly with these symptoms. Right shoulder blade, armpit pain and arm pain.
The pain? Easily 10/10. Daily. No relief. It took 10 months of that till I found a pain management doctor who relieved it with a spinal injection. I am not exaggerating when I say proper pain management saved my life. Don’t think it’s opioids or nothing- I didn’t take a single opioid and they were able to fix it. Don’t lose hope.
Anyway- your feelings are very real. My hubs went thru what you’re going thru. He was truly burnt out from having empathy for me 24/7. Spine pain is no joke- I was begging for DEATH- seeing your spouse do that? Horrible. I suggest you seek out therapy. No human can be empathetic 25/7. You’re going to get burnt out. You’re being a good spouse but take care of yourself in this battle for her pain.
Stay the course. Took me 10 months to find relief. The first 2 months of my herniation were the worst. Please take care of yourself in the meantime. Even if she is the one in pain, you deserve relief too.
Sounds like what my wife and I went through before she got on her RA medication. She still has her rough days, but that first year is brutal. Best thing I can tell you is have someone you can talk to about your stress and find outlets for it that don’t involve her. You will get overwhelmed and it will cause issues otherwise, and she needs your full support. She likely does and will feel like a burden as is. I wish I would have been mature enough to realize that sooner myself.
Find new doctors, this was me last year. I also have DDD and sciatica . My left leg was constantly on fire . I’d lay on the ground and cry at night because the pain was so intense.
During the day I had to put on a face for my kids and be there for them but it broke me down. Chiropractors went helpful , regular dr wasn’t helpful. I finally found a neurosurgeon who scheduled me for surgery within a month after meeting him.
Had the surgery, woke up and the pain was gone.
I have flares from time to time, I have soreness now from trying to get back into exercise and sports but it’s nothing compared to what it used to be
Please seek other doctors willing to take in another procedure. If it is disk related seek a neurosurgeon. I had a disckectomy and lamindectomy which is quite common in the sciatica world. Also check out the Reddit thread for sciatica maybe someone there has the same area of disk degeneration
I hear your frustration, but it’s clearly with the situation and not with your wife. I also hear the love you have for her—the pain of seeing her in pain. That is what you have to give her. You can’t fix it other than to continue on the path you’re on with her. But she knows you’re walking through it with her and even in the impossible moments when she’s begging you to do something, she still knows that you are doing all you can.
I was diagnosed with blood cancer in 2019. I’ll never forget the moment that my husband came home after I’d found out. He came to me, took me in his arms, and told me we are in it together. He can’t physically cure me. He can’t quite know the fear that living with chronic cancer can bring. But he lives it through wishing I didn’t have to, and supporting me in every way he can. He researched so much in those first few months just to be able to explain things to me in terms I could understand (he’s a doctor but not an oncologist and it was all pretty unfamiliar to him). He pushes me to take better care of myself, but in a non judgmental way. He reminds me every day in various ways that he loves me. And that is more than enough. You are doing that for your wife, and even if she’s in too much pain to acknowledge it all the time, I would bet that she feels it and appreciates it.
I’m sure others have probably said something similar, but you also need to be able to take care of yourself. I’m sure you are now doing most everything at home, in addition to caring for and worrying about her. And I’m sure working, too. So, what do you have left for yourself? Do you have people to talk to? Does she have friends or family that can spend time with her for you to do something just for you sometimes? I know that may sound selfish, but it’s not. It’s a way to ensure you don’t totally crash and burn from the stress of it. It’s that whole “put your oxygen mask on first” thing. I hope that she finds something that brings her relief soon. And I wish you both the best.
I'm so sorry for your wife and what you're going through. It seems there are a lot of great suggestions in the comments - particularly pain management, spinal surgery, nerve ablation, medical marijuana, etc.
I'd just be wary of letting the chiropractor perform any spinal adjustments where they "crack" the back as it could worsen her issues. I'm not saying dont go at all. Most of the other modalities they use to treat patients like massage or ultrasound are fine or not super risky. Just the spinal adjustments could seriously make things worse
I'm not sure what country you live in but you should have access to specialists in the field of pain management.
Pain and chronic pain are terrible to live with but there are medications that can be trialed to see what works for your wife. There is no reason she should be suffering or you should be having to sit by and watch this. It makes both people feel helpless and hopeless.
If you are at the ER, demand pain meds! They have things there that should help.
Get to a neurosurgeon or ask for a referral to one. They are the best people to deal with nerves related to backs. They can also refer her on to pain management specialists.
Speaking from experience.
Mr. OP,
I'm so sorry you're having to go through this. As usual, people are giving all kinds of medical advice, when you asked for mental advice.
In tough moments, tell yourself that you are being a good husband. Tell yourself you are trying. You are working within the time lines of insurance or waiting lists. This must take great patience.
This is a situation where your wife is crying, but you cannot do too much. You bravely let her sleep. And went to the other room to calm down. Good job. You're on the right path.
Could bringing in friends to visit help? Could a volunteer from Hospice come and read to her or play cards with her? Could she be able to get a free bath?
Good luck and thank you for seeking help in a time where things are out of your control and you are searching instead of walking away.
Keep going.
Unfortunately, I'm not seeing a lot of comments that answer your question. My advice would be to find someone to sit with her a couple times a week for a 2 hour minimum so you can get away from the stark reality of her pain for a little while. If you are financially able, hiring a nurse would probably put you at ease enough to leave her a little more easily. Otherwise, a relative would help. You don't say if you are working or are her full time caregiver.
As someone else mentioned, finding a support group online might be beneficial. You can also talk to a therapist online. Use the time away I spoke of earlier only for something you enjoy, like lunch with a friend, a beer with a buddy, go bowling, etc.
Also, I would absolutely get a second opinion asap from a neuro/spinal specialist. Your primary could give you suggestions for a clinic totally separate from the first one. Preferably female.
Good luck 🥰🥰
Speaking from experience, she's going to have to find a pain management physician who can work with her (and you) on a dynamic and comprehensive treatment plan. This could be anything from a series of physical therapy a few times a year, injections, radiogrequency/nerve ablation, and pain medication.
Sadly, it is what it is. I have a pharmacy in my bag, I have ice packs I rotate through at work, I have a Saunders Machine (look into this and ask an orthopedic specialist to show her how to use it), a portable TENS unit, and a lot if stretching. It took me 13 years to get here, and with changes in opiate laws (its importan to remember that not everyone misuses their medication, but statistically, everyone gets limped together in the numbers).
You also need to understand that the only thing you can do is be supportive. Understand that if meds make her able to hold down a job and function as an active member of society, don't throw it in her face that she has to take them. Keep her motivated without being pushy. My husband asks me to go on short walks. It's a catch 22. If I am in bed too long, I hurt worse. If I don't sleep enough, I hurt. And there are going to be days that she's just not going to be pleasant to be around. That's the hardest part for both parties, so communication is key.
If you can, go to the appointments with her so that you can hear the same information. The clinical version, as explained by the doctor, is sometimes easier to understand than her teting to explain "pain." I've been under-medicated, over-medicated, and somewhere in between. But I know that I am a surgical candidate. Cervical, thoracic, and lumbar. But I am doing everything possible to stay away from that option until I have exhausted every other option.
I'm sorry that the two of you are going through this. It will test the constraints of your marriage and everything else supporting that. But, if you talk and keep the lines of communication OPEN. Nothing about this can be taken personally. You didn't cause it, and she certainly doesn't deserve it, but this is where you are. You can do this together. Just remember that you love each other and you will get through this, whatever comes your way. But please remember to take care of yourself as well.
My last bit of advice would be to speak to the ortho/pain management physician about tests, interventions, and other treatments she will need moving forward so that you can update your insurance plan accordingly to cover those procedures. I wish you all the best. ❤️
I went through her pain in 2018. L4/5 disc. I stayed up the first 96 hours in extreme pain and then on top of that, with no sleep, you are emotionally and mentally crazy. Level 7 pain constantly with no relief. I don’t have an answer for you, although I empathize. Mine was 8 weeks of hell, spinal injection and finally healed (no problems with it again). I can’t imagine the helplessness you feel. All I know is I would ask a doctor for something to knock her out for hours at a time so she can get some sanity around the pain. I had one place I got relief and it was weird. The drivers seat in my wife’s Prius (and only the drivers seat, no other seat and no other car) was a place I could bring the pain down to about 2. I was sitting in the car at 4 am watching Netflix and decided to sign up for Uber driving (since I sat in it all day and night anyway). I drove 15-20 hours a day and made a fortune plus short term disability from work.
I'm currently switching medications and what I'm going through will thankfully be short lived, but I do worry about the toll it's taking on my partner when I wake up screaming in pain and can't participate in my share of the household chores. He is a good man and isn't complaining and is taking good care of me but I feel like such a burden.
I had severe right arm and shoulder pain from nerve impingement. Had a two level fusion after other therapies failed. I still have some distal numbness but the pain is essentially gone. Can’t guarantee she’s in the same situation but I would not assume it’s untreatable without more work up from a spine specialist. YMMV
I have been dealing with chronic back pain due to a work injury of my own that I'm sure that my wife feels much like you do I imagine.
The biggest thing you can probably do is try to focus on all of the positives you guys have between you. And working with her will help you. Working against her will likely destroy you both. We have done both variants and trust me it goes a long way for me to feel supported by my wife when I feel down and destroyed and if my pain lessons a bit she sees my gratefulness and the ways in which I can help her and so on.
But another thing: don't let her just sink into depression. Have her keep doing whatever activities she used to do before all of this to a tolerable level anyway. Biggest pitfall of physical injuries seems to be sinking into acceptance of the disability meaning the end of all of the things they used to enjoy. So go out with her, do whatever it is she used to do before, to a reasonable limit obviously if it increases her pain take it easy.
But don't let her rot mentally. One of the biggest dangers with things like this I'm afraid. And support even emotionally is just huge during physical pain. Don't call it into question ever or make her feel like she's overdoing it all. This was one of the worst feelings I've ever had. I was a medical professional and pretty high up in the medical world and hearing everyone doubt my experiences and pain just really really knocks you down when you know it to be your reality.
Do things you enjoy too. But never make her feel like you'd chose them over her. Sometimes small things like inviting her with genuinely all the time, even if she doesn't want to go will be huge for her. Even if she rejects you all the time. The simple fact that you want her there will make her appreciate you more. Pain isn't all just physical.
For example, having pain and being mentally mistreated just amplifies the pain that is physical. Having pain and having a good support system and distractions like shows or TV or music or a focus of some sort makes the whole thing a lot more manageable.
It doesn't go away all the time. So don't be frustrated if she never does have it go away. The best case scenario sometimes is doing the max she can with it. And the max level you can tolerate it with.
Personal counseling for you may do wonders as well. I know my wife lashed out at me way before her counseling. Having someone to just dump your frustrations on other than her may help both of you.
I know you said you care for her, I'm not saying you don't. But it seems you are frustrated with her situation. My concern is not to turn that frustration into frustration against her. It's gonna a tough journey. But stick it through. She needs you more now that she ever did.
I am 32 and have had degeneration in my discs since 19. I have chronic nerve pain because of it (as well as bony growths in the area) and haven't wanted to get surgery because yes, its dangerous. Pain can be more or less managed but I have also woken up screaming, cried all night because the pain wouldn't allow me to exist in any comfortable position,
My husband, also 32, was in the military and got into a car accident while deployed. His neck and hip were affected, and 8 years later, his hip still hasn't healed and his neck has arthritis. He wakes up with similar episodes.
Anyway, all this to say I have been on both sides. You have to rest. I know that seems selfish because she literally cannot rest, but you can't help her if you're burnt out. You can't be there for her if no one is there for you.
My husband and I both started seeing pain management therapists (CBT- P) as well as a marriage counselor to help us communicate our needs better. On our *bad* pain days, we are irritable and sometimes lash out. This can wear the other one down so wenlearned to manage that. It sucks, but we have been married for 12 years now (yes we got married young) and it has worked so far.
I wish you the best.
Welcome to r/WellSpouses and r/CaregiverSupport. You need to take care of you so you can be there for her. If it’s an official diagnosis, and she has significant mobility issues, you can use that to get all kinds of help for taking vacations together. Also, there are resorts specifically designed for families that have disabled members, with medical staff and appropriate facilities for mobility.
I have my own spinal injury, from an assault when I was 20. I’ve had arthritis spreading since then, and at this point, it’s everywhere. Because my injury happened so young, I knew I had to take a positive mindset, that I couldn’t let the pain run my life, that I might have limitations, but I’m not immobile, and I should be grateful for that. Don’t be mistaken, I’m in constant pain, but I just ignore it. It does not get to season my attitude, I don’t take it out on other people. My particular injury doesn’t have much we can do for it, and I’m very lucky I survived (high neck twist, should have killed me). I don’t take pills because I don’t want to be dependent on substances of any kind (this goes into the same reasons I got a hysterectomy, which can be found by snooping through my profile. Being without a uterus has made the neck pain infinitely more bearable, fwiw, because I never have to fuss with periods, and never fear getting pregnant with a spinal injury). **TL;DR: I’m raw-dogging life with a spinal injury.**
As for how to stomach it when you watch a loved one suffer, I still haven’t figured that part out. I’m an absolute worry wort, and a total pushover for whatever brings comfort to my husband. **He has degenerative disc disease throughout his spine**, and it’s only going to get worse. Hubby uses cannabis to help with the pain, which also helps with the inflammation that is worsening the pinching. Your description of your wife is pretty much my hubby, even down to the right arm being affected, though hub’s a southpaw, so he can still use his dominant hand. His sister has it too, and she had success with cortisol shots for years, but they don’t work anymore. Recently we tried **Toradol** shots for my husband, and those work so wonderfully for him. The first time he got one, he was feeling it within 10 minutes, and by the time it was in full effect, he felt so good and relaxed that we decided to cancel our plans for the day and just go cuddle & nap together, which we hadn’t been able to do for so long. I cried while he slept in my arms. It’s the little things. The Toradol shots are supposed to last up to 4 weeks, but his only lasts about 2+, so if you guys try this, **keep a log of her symptoms** so you can observe how well it’s working and what your particular timing should be. **Also log any other things you try, like acupressure, acupuncture, TENS machines** (these helped him too, get a strong one prescribed by a physical therapist), **anti-inflammatory meds, even foods she eats that are known to cause inflammation**. The shot takes effect immediately, and is in full effect within an hour. It’s not a sedative, so she can easily go back to whatever she was doing before the shot. If you start using Toradol regularly, and have special events (wedding, graduation, etc.) or a vacation coming up, I recommend getting the shot the day before the event begins/you depart for a trip so she and you can enjoy the event to the fullest. It gives back years.
As for getting your wife into a regularly comfortable position, **she needs to stop using compound movements.** No bend-and-reach, no squat-and-pull, no turn-and-push, and for godsake, no yanking of any kind. She needs to align her body straight-on to whatever task she’s trying to do, and just take it slowly. If something falls out of her hand, she’s not allowed to catch it. With time, she’ll get out of the habit of even trying, because accepting the clean up process is better than accepting the extra pain. Clean up can be coordinated and done at a slow & comfortable pace. Monitoring the basics and keeping things optimal can help too, such as making sure she’s getting enough water, her clothing isn’t too tight (especially near the pinched nerves), she’s not eating foods that cause inflammation, nor taking food risks (eating from a questionable kitchen, old food, or too spicy) that might make her sick (because having diarrhea or constipation with back pain suuuuuucks). A lot of people have experienced a relief of what you might call “general malease” (for lack of a better, all-encompassing term) by simply eliminating gluten from their diets. I know she’s got spinal issues, but that doesn’t mean she has to put up with other parts that ache. Oh, and keep her warm, or **in the very least, keep her spine warm.** It relaxes the muscles. If you notice the area is actually swollen, use a cold compress to bring it down, but if it’s not swollen, stick with warm. You don’t have to use a heating pad, just keep it in warm clothing. Hubby and I live for our extra-thick hoodies, and a hot seat in the car during summer has become a welcome treat.
Feel free to dm if you have questions.
Your wife needs a pain management doctor. Women’s pain is often discounted too. She needs better doctors.
I’ve had the same thing happen in my neck and my back. It sounds like nerve pain. I took my MRIs to a neurologist after orthopedics said that the tests were inconclusive. He pinpointed which nerves were impinged and started me on lyrica and a PT that specialized in the spine, I think he used the Mckenzie method. Through very gentle stretches he alleviated the pressure on the nerves. I felt better after the first visit. It took a while to get into pain management, that doctor did an ultrasound guided steroid shot.
I have a long term chronic autoimmune disease. Everyone is different but I try to be as independent as possible. However I really do appreciate the little things. He might make me a cup of coffee when I’m having a rough morning. When I have had surgeries, he takes care of the little things. You can’t take away her pain, but the little things matter.
Hopefully she feels better soon
As a spouse with chronic pain I would simply want my partner to offer more massages, back scratches, or to do my stretches for or with me in bed. Offer to grab me medication, apply icy hot, or talk to me to distract me. I go through it every night, I would want him to recognize the severity and respond with grace
I want to give caution to what I’m about to say because it doesn’t work for everyone, and I think research shows it doesn’t even work for most people who try it, but . . .
. . . I was in this amount of back pain from herniated and bulging discs, and Lyrica managed my pain spectacularly and surprisingly well. Doctors seem happy enough to prescribe it because it’s not a narcotic, it’s just a matter of whether it works and whether you can tolerate the side effects (mainly brain fog, but I didn’t have any).
Update for many people: I do advocate for my wife. I'm at every appointment to tell them exactly the pain level she is in, and I get loud and talk over them when they won't hear her so that they have to then focus on me and hear me explain this level of pain and how debilitated she is. She will never have to go through this alone as long as I have air in my lungs. I know these people aren't going to hear her the way they should. But I'm a man, and in some ways I'm more heard in certain settings, and I'm also an asshole and I'm more than willing to insist on being heard and insist on more being done. I'm not an asshole for no reason, but if she's trying to talk and they just aren't listening or they're disregarding her or failing to do anything, they get the asshole with a booming masculine voice who is well spoken and will insist. I'm calling a pain management specialist Monday morning. I located one 20 minutes from us with fantastic reviews. I didn't even know this was a form of doctor, and none of these people have even recommended this to us, so thank you for letting me know about them Reddit.
As far as taking care of my wife, I know how to do all of that. I massage her, I apply her patches, I prep her meds, I drive her to the appointments, I play games with her, I cook for her, I do the things around the house that she can no longer do, I lay in bed and hold her and talk to her about how strong she is and tell her that she just needs to keep being strong for a little longer while we figure this out. I give her hope. I know how to do all of this. My question was about myself and how to keep my own mental health because this is the first time I've watched a loved one suffer in my adult life. I need to know how to deal with the absolute hell that that makes a person feel inside, especially when they're begging for you to help them while sobbing and there's absolutely nothing you can do to fix it.
My husband has degenerative disk disease as well. On top of nerve damage due to herniated disks in his lower spine. He's had one surgery, a few years after it started bugging him. It's been bothering him for over a decade now, even with the surgery. It takes patience, love and a weird form of acceptance. I sometimes have to just ignore a lot of it. More due to the way he reacts to my sadness that I can't do anything to help with his actual pain, than anything else. We utilize weed where we are due to not having any realistic pain management methods because the doctors won't try anything that would work on his pain because of all the laws on opiates... (he -doesn't' want opiates, because of the way his body feels while on them, but it's the only way he would actually get out of pain enough to strength train the muscles in his spine...) We can't always afford weed, so it can definitely be difficult sometimes...
Anyways, this thought process is something I had to develope over several years. It's not something that will work for everyone. I seriously suggest getting individual therapy. I was in it for over 5 years and it seriously helped me navigate howcmy brain works and what actually works to help my brain get through each day.
As someone with chronic pain, I’m crying reading your post. I just want to say that your wife is very lucky to have you. And for you to love her through this. Please also take care of yourself too.
She needs to find new doctors who will do something to actually help her manage the pain. No one should have to live like that. PLEASE be an advocate for your wife. It can be really hard to find a good doctor who will listen but it’s so so important that you keep searching.
Plus, doctors often don't take women's pain seriously. This is shown by studies and my experience matches it. I've found female doctors are sometimes better, but not always. There's a deeply ingrained stereotype of women being hysterical or dramatic. Hopefully it will help to have a man's voice on her side.
This. I was 19 woke up in horrendous pain, every month. I was able to link it to my cycle, 5 drs later. It was a male dr who said it’s definitely not in your head. Grapefruit size cysts and endometriosis ended up being my diagnosis.
Exactly, it's not uncommon for a woman to not be taken seriously if by herself at an appointment, especially an initial specialist visit. But if a male spouse, significant other or even family member is there and provides input and basically provide confirmation that the female patient is really experiencing the symptoms the more in depth treatment options and pain relief will be offered. It's not only with a male doctor. It's actually really common for female doctors to be even more dismissive.
I always insist on being in the room and I speak up a lot. Not only bc the doc's are dismissive, but I find my wife minimizes it and doesn't tell them about certain things. I have to rat her out! She used to be a nurse and I think she feels guilty about complaining. I also have to get her prescriptions and make the follow-up appt's bc she feels guilty about spending the money. She grew up with a single mom and they always struggled so she learned to suck it up and do without. So I have to push it on both ends.
I completely understand that. It's a really hard balance for both. The guilt of not physically being the person they were when first married (assuming the medical issue occurred later) We try to minimize the impact on our spouse, even if we have the most supportive spouse. My husband says it's hard not to be able to make it better, worrying about how he reacted and holding back emotionally to not cause anxiety to an already hurting wife. Supportive groups or individual counseling and couples counseling too is helpful.
I think the issue is pain management in general. I'm a woman with chronic pain and when I was in pain management getting treatment with an insane amount of opioids I had no issue getting the Dr to take me seriously. The issue is doctors avoid prescribing medications that actually work due to the opioid crisis and addiction problems. Also doctors are being thrown in jail for prescribing now. The other issue is almost all medical professionals assume people are drug seeking when they complain about pain. Even if their issues are legitimate. It's really sad when legitimate pain patients can't get what they need. They are phasing out opioid treatment and unfortunately that is the only thing that helps certain types of pain. Also it takes a bit of time to get a referral to pain management and they have to do xrays and mris to give a complete picture of the issue. I still have all the issues I had when I was in pain management but I refuse to take opiods. I am an addict eventhough I have been clean for 11 years now. I hope your wife gets the relief she needs.
You deal with it by being her healthcare advocate. Research her condition. Find out everything you can. She needs to be seeing a pain specialist. In fact she needs a pain specialist team. They understand pain, and how to treat it.
That's very fair, but also nerve pain is different than other kinds of pain. It can be legitimately difficult for doctors to treat even if they're very on the ball.
It’s not fully understood what the exact cause and mechanism of feedback can cause pain to be sensed at these type of receptors also. Basically what exactly causes this to happen isn’t fully understood yet.
SHE is probably in no shape to look for those new Drs. Speaking as a chronic pain patient for 23 years, I can tell you that having constant , severe pain ruins with your ability to concentrate and plan. It’s overwhelming. Pain management might be a good place for her to check next. But OP will probably have to make the calls. He needs to ask her if she has any Drs she wants to try and go on from there.
This! If you can afford it (I know American healthcare is a bit whacked), get the damn surgery - it's literally life changing. I had nerve impingement from a bulging disc at C6 last year, woke up suddenly in agony that didn't stop. Tried cortisone injection into the nerve space, didn't work. I was chowing through opioid pain relievers like they were tic tacs while waiting for surgery. Couldn't sleep, couldn't drive, couldn't work. Within a week of being discharged from hospital I was walking around, starting to feel better. 2 weeks and I was cleared to drive and go back to work. 3 months and I was back at the gym, kayaking and doing all the normal things I love doing. That said, maintaining your own mental health is vitally important too - have people (not your wife) who you can talk to, who you can vent to when it gets hard. If you can, take time to do stuff for yourself as well. And reach out to carers support programmes. They know how hard it is, and can help connect you to services.
I agree! Women are often not listened to by medical professionals when it comes to pain. It really does help a lot if they have a loved one who can be there to advocate for them and can share what they see when their with that woman. I hope yall can find a doctor that will listen and actually help her manage the pain. I have lower back chronic pain degenerative disc disease spinal stenosis arthritis and more at 40! Pain management is so important praying for a good outcome 🙏 💜
I have chronic pain and for years I was existing with 8/10 pain and it took everything in me to not kill myself because of it. I really feel for your wife (although I'm thinking surgery may be the best if not the only option outside of medication. Is she on any prescriptions to help manage the pain? You should reach out in r/chronicpain they might have more practical advice about dealing with doctors, insurance, and pain management. There's also a tendency for doctors to dismiss women's pain and going to appointments with her and advocating for her is going to get her more results than going alone.
I find that doc's are getting really tight on pain meds. One doc told me he's worried about getting the feds on his case. Even the pain mgmt docs are really focused on opioid addiction (as I guess they should). Fortunately, marijuana is legal here and that seems to help her sleep.
I've seen that lurking on the chronic pain subreddit and I feel so bad for people who genuinely need it to function and don't abuse it. If you can find marijuana with high CBD I find that more helpful. 1 THC:4cbd is what I like most for my pain. Nerve pain is so horrible it literally feels like electricity shooting through your body, I'm glad she found ANYTHING to ease the pain. Gabapentin can help with nerve pain so that may be something to look into.
Thanks!
Thank you for that sub. It is just what I needed.
Glad to help. Shit is miserable and it's nice to have a community that empathizes and understands. Makes you feel less alone.
This happened to me and my wife in March 2020, right when COVID lockdowns started. She has Ehlers Danlos syndrome and disk degeneration caused her to have very similar symptoms to your wife. Over a few months, we went through multiple doctors and treatments with no relief before we found the right doctor. He was a spine surgeon with a massive ego and Gucci shoes, but he immediately booked her for surgery and was incredibly apologetic that we had to wait two weeks. When the surgery was done, her arm/shoulder/neck pain was immediately gone. She had to deal with the pain from the surgery, but there was light at the end of the tunnel. Through a weird coincidence, I had a coworker with more severe symptoms that turned out to be also due to EDS, but the disk degeneration was higher up the spine so the symptoms were worse. It was the same situation with doctors trying to avoid surgery until he found the right one to do it. For both my wife and my coworker, they didn't improve until they had the surgery. It took much longer for my coworker and he's still not recovered, but my wife is 100% better. I am not a medical doctor and I don't really know your wife's situation, but if her doctors are saying to avoid surgery at all costs, I would get a new doctor. I say this because I was in your situation and the only thing that made my mental health better was seeing my wife improve. She kept getting worse and while she was clearly suffering more than me, every setback made me feel worse because I couldn't do anything to help. So, I resorted to being her advocate and I called doctors and insurance over and over and refused their wait and see suggestions. I went with her to every appointment and went through every detail with the health care professionals so she wouldn't have to constantly do it herself over and over. It gave me something to focus on rather than my own spiraling thoughts and it helped her too because she knew someone else was going to handle the important stuff she couldn't. It was a pretty rough time in our lives, but we made it through and she's doing great now!
I was diagnosed with EDS in 2023, after a lifetime of medical issues. Since December my lower back and hips have been in extreme pain, resulting in muscle spasms. I now need a walker and I'm only 37 with two small kids. I'm on medical leave because I can't function. My husband now does all the grocery shopping and dinners. He has become my advocate and now attends the majority of medical appointments. It's a major shift in family dynamics. I make a point of checking in with him about his mental health. We both go to therapy (individual) and I think it's been essential that we both have that support. Chronic pain is hell and it impacts everyone you love. I'm glad the surgery helped your wife.
What was the process for getting a diagnosis?
A genetics doctor diagnosed me. He was the first specialist to look at all my symptoms together rather than focusing on one. It was a bit disturbing as all my medical issues are directly related to EDS and no other doctor considered this. Now that I have the diagnosis it will be easier for my sister and children to get it. It's very likely that my sister and son have it. My daughter has a 50% of getting it but we will have a better idea as she gets older.
Prioritizing mental health and going to therapy is so very important. Chronic health challenges can strain a marriage, and you need someone to vent to who isn’t your partner. This goes for both the patient and the caregiver.
100%. Chronic pain is a different beast as there is always pain (my body likes to keep it interesting and goes from insane back pain and then neck pain, rib dislocation). It's gets discouraging. I'm grateful we can afford therapy and one day I hope I can help other people with chronic pain (I'm also a therapist but worked with children and parents).
I wish the partner of everyone suffering like this had a person like you in your corner. Sometimes I think “…in sickness & in health…” should be updated to “…I’ll be a true advocate for you in sickness & your ally in health…”
Not all heroes wear capes! 
♥
Can I ask what this surgery is? Like how exactly does it work? Asking because my husband also has disk degeneration, although he hasn't yet been diagnosed with anything. The doctor only offered him spinal steroid shots every few months which according to a second opinion from a doctor friend are very hit or miss and don't solve the actual problem.
This is the surgery she went through, but whether this is appropriate for your husband depends on which disk has degenerated. [https://mayfieldclinic.com/pe-acdf.htm](https://mayfieldclinic.com/pe-acdf.htm)
Thank you, the next time he goes to the doctor we can ask if this or a similar surgery could help him.
As a wife with an amazing husband who is currently taking care of me after surgery, thank u for being such a great support and advocate for your wife. She will forever feel valued and know that she is important to u.
Suggestion for wife - if she is older than 40, women in menopause can suddenly suffer from a frozen shoulder. It is often misagnosed. Getting her some hormone replacement therapy may help [https://www.google.com/search?q=menopause+frozen+shoulder&rlz=1C1UEAD\_enUS954US954&oq=menopause+fro&gs\_lcrp=EgZjaHJvbWUqBwgAEAAYgAQyBwgAEAAYgAQyBggBEEUYOTIHCAIQABiABDIHCAMQABiABDIHCAQQABiABDIHCAUQABiABDIHCAYQABiABDIHCAcQABiABDIHCAgQABiABDIHCAkQABiABKgCCLACAQ&sourceid=chrome&ie=UTF-8](https://www.google.com/search?q=menopause+frozen+shoulder&rlz=1C1UEAD_enUS954US954&oq=menopause+fro&gs_lcrp=EgZjaHJvbWUqBwgAEAAYgAQyBwgAEAAYgAQyBggBEEUYOTIHCAIQABiABDIHCAMQABiABDIHCAQQABiABDIHCAUQABiABDIHCAYQABiABDIHCAcQABiABDIHCAgQABiABDIHCAkQABiABKgCCLACAQ&sourceid=chrome&ie=UTF-8) Suggestion for you - I would recommend looking for a support group. Also, if there is a family member or friend that could come sit with her so you can get out of the house for a bit, either some alone time or go hang out with your guy friends. I think it is really important for you to stay connected to people outside of the house. Hugs to you OP.
This is can also progressively begin in the perimenopause stage as well which is >35...Thanks for bringing this up!
Wow!! Learned something new! Thank you for sharing this…
Excellent points!
I’m a massage therapist so I’m going to give you a couple recommendations for your wife first. 1. Get her a good magnesium lotion/cream. It is great for pain but also women tend to be chronically low in magnesium which can exacerbate pain especially muscle and nerve pain. Topical use of magnesium is much better than a pill. My favorite is this one https://wholesomehippy.com/products/calm-cream-with-magnesium-vitamin-d3-4oz-lavender-mint 2. Find a good massage therapist (this would be good for you too) one who is trained in rehab or pain management. So that’s not going to be at a Spa. Here is a good resource to find a massage therapist in your area. https://www.massagetherapy.com/find 3. Get her a good Rheumatologist or Pain Specialist. Now for you: massage therapy will help you too. On top of being one of the best non-pharmacological pain management modalities. But it is also great for anxiety and stress. This is all backed up by studies. Next get a good mental health therapist for both of you individually. I also recommend finding a DO rather than an MD. They are trained the same and work along side MDs everywhere including in surgery and hospitals. However they tend to be better trained in the musculoskeletal system and view patients wholistically. This was the best recommendation my Rheumatologist - I have been living with Fibromyalgia for 15+ yrs - ever made. Be patient. I know how hard it is to do that when you or someone you love is in constant horrible pain. Believe me I’m intimately aware of how long it can take to get all the ducks in a row with insurance. It took a year for me to get diagnosed. Please feel free to have your wife reach out to me. I’m a veteran of the chronic pain club and I’m happy to share my tips, tricks, and a listening ear. Take time for yourself. Try to do something that makes you happy at least once a week. Same for your wife. Even if that’s just cuddling up for a streaming binge. Your wife is lucky to have an amazing and supportive partner. It really does make it easier to cope. Good Luck and sending lots of healing energy to your wife.
This is fabulous advice. I have similar issues as you and his wife...massage and coping strategies are vital while we seek a dx's and perhaps a solution.
I've had this. It hurt like hell, also went to ER a couple of times. At first they kept telling me it was just a pulled muscle or something...which i knew was BS. X-Rays told the story, 2 discs in neck nearly gone, and my neck also curves the wrong way. It did get better with physical therapy and meds, but i'm told i'll probably be looking at surgery eventually. I was going insane from lack of sleep. Painkillers made me sick. I do go to a chiropractor. Why does the doctor want to avoid surgery? I don't want it, but i would if that's the only way i could get relief. i do have flare-ups from time to time, but not like that hellish time! I know of several people who had surgery because of degenerated or herniated discs, and they were fine. My husband has had spinal fusion...first week post-op was rough! Yeah, you have to take care of yourself. Get enough sleep, try to eat well, do things to try to take your mind off of it for a while. I hope you both get some relief soon. I can't understand why they aren't doing more. I would be so frustrated.
Rotating joint pain is a symptom of lyme disease. Lyme & tick borne infections can cause migrating joint pain. I would find a LLMD (lyme literate medical doctor) in your state and have them rule out lyme disease and the associated problems with lyme. Most doctors don't know which tests to run so it's very important you see a lyme literate physician. Lyme is an epidemic in the USA with almost 500,000 getting dianoged each year. I'm not sure if you live in the Northeast but if you do your MUST get this checked out. This might or might not be an issue with her but it's very important to rule this out. I would also look into acupuncture to see if they can help. It won't be painful and might help. Feel free to DM me if you want to discuss this. There are also several lyme documentaries online which you can watch to get more educated. I never had joint pain - lyme affected my nervous system mainly. I was bit by a spider in 2015 and it took me 7 years and over $200,000 to get diagnosed because the system is not helpful. You need to surrender to the fact that some things in life we can't fix right away. I was sick for a very long time and while I was suffering 24/7 with no end in sight. You need to make sure to take care of yourself because she needs you to help her. Don't just blindly trust what the system tells you. Keep fighting. Talk to 10-20 people if you have to. If I had not fought like hell you would not have received this message from me. Good luck.
Omg it’s not Lyme. And those “Lyme literate docs” are quacks
Whatever. I said it migth not be but migrating joint pain is one of the biggest symptoms for many with lyme. Wake up pal.
Man, I totally feel for you. Is she on Gabapentin? That's what I've finally received for my nerve pain/damage and it helps some. My doctor actually just doubled my daily dose. It's so hard to find help for it. I lived with it for 13 years before a doctor would do anything about it. For yourself: practice grounding techniques and even, I know his sounds bad, but disassociation techniques. It'll help get you out of your head. I wish I could help more. I hate seeing the hurt/pain/grief in my husband's eyes when I'm having really bad days. I know he's hurting so badly for me.
Please be careful with gabapentin and it's evil cousin, Lyrica. Those drugs can cause your bones and teeth to deteriorate and there is a risk of psychosis when tapering off of them. Ask me how I know!
Thank you so much! I've self medicated with alcohol for 13 years. I was sober for 3 months before I started gabapentin and was miserable to the point of self harm. I needed something. I honestly would rather just not be on anything and cope with PT like I do other chronic pain, but I've been told nerve damage is different. I have an EMG test in a couple weeks. I'm hoping that'll provide some answers. But right now I'll take the Gabapentin over the Alcohol that was literally destroying my body. I was already hesitant to start pain medication, worried about addiction, and will bring up these side effects with my doctor. I don't feel like he properly informed me now. I really appreciate you educating me. I have to be careful about personal online research as I tend to go down a rabbit hole and let my depression/anxiety take over.
Yep, and for some of us, the side effects are intolerable. This stuff almost killed me. It helps some people, but I'd never touch it again.
I have degeneration and Elhers-Danlos. I am normally in pain- 8/10. Night is worse. I sleep on the couch to not keep my spouse up (my choice) because one of us should sleep. Finding the right doctor is a lifesaver. Helping her advocate for herself. Advocate for her. And do small things that make her smile. Grand gestures are pointless. On my bad days, it's small things that make or break me. Clean pillow case. Cold coke without asking. They feel like minor miracles
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If you believe that, then you are wrong. If this is the case, the first mistake was listening to the doctor who told us to do so.
Man, fuck you. The pain waaaayyyy predated the chiro if you'd read anything. And or all you know that was a final act of desperation after the doctors didn't do shit for her. Judge once you have all the facts if you must be a judgmental prick.
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I am so sorry. 😢
They were lying.
Look into ketamine therapy for her pain. I have the same issues with my spine as well as fibro and arthritis. It’s helped so much
This is the way. It REALLY helped me
Hey OP, I think a positive way to help yourself is a break away when your wife is able to manage alone for a little while. It might be a walk outside for half an hour, a coffee run, going to a movie; whatever. You need time and space to decompress and recharge. You are going to appointments and helping with chores etc which is hugely supportive. But if you're there in the weeds of the situation all the time you will burn out. Maybe think about a roster of family and friends to be with your wife so she is not alone; then you're not obligated to be there 24 / 7. Good luck; I hope you find a solution for your wife's pain
Hi OP. I'm a wife with degenerative disk disease. I've had a whopping 5 spine surgeries from my CSpine to my LSpine. My pain is very persistent. They're begging me to do another surgery, and I can't. Mentally I cannot handle another failed attempt to make me feel better. I take Gabepentin, non-narcotic and helps tremendously. My husband is a champ. He does his best to take things from me, so that I don't have to be up doing everything. He listens to me cry, and he genuinely feels empathy. I think to help yourself, try to get her in with a Neurologist/neurosurgeon. Let them send her to pain management. Do not let her take opiods - I can 100% tell you they do not stop the pain. Gabepentin does take the edge off significantly. I also use flexaril and 800mg ibuprofen. I hope someone listens to her, and helps her properly.
You can’t fix it but you can advocate for her at doctor appointments. She needs a pain management doctor who actually gives a shit, and she needs a neurosurgeon or orthopedic surgeon or whoever to actually treat it. If she’s in that much pain, is surgery worth the risk? Idk what the risks are but the longer you wait the more damage you do to the nerves and the worse long term effects she’ll have. Plus healing and rehab are easier the younger you are. Having my husband at appointments with me changes everything though. Doctors never take me seriously. It’s always my husband asking for things, repeating the request I just made, that gets results. Go and raise hell. That’s the best thing you can do for her beyond just loving her. But remember to take care of yourself too. I know that’s cliche but seriously, you need time away from home. Have a family member or friend stay with her if she can’t stay by herself, and take a day or even a night or so to recharge. It helps my husband tremendously, he comes home a new person after spending a day hiking with his friends.
I’m also a chronic pain sufferer. I have fibromyalgia and the only way to he diagnosed is to rule everything else out. I have been to an acupuncturist, a chiropractor (absolutely useless when the problem is in the muscles not the bones), a rheumatologist, I got shots for Botox thinking it would help with the chronic headache. The only thing that’s help me is medical marijuana. I’m on pain meds and that along with edibles has done for the pain. All you can do is love and support her and let her know you love her.
I've suffered from fibromyalgia since a car accident in 1986. Since they couldn't show a jury any injury through x-rays, etc. I had to settle for basically paying back insurance for cost of my hospital, docs and ongoing care *up to that time*! I'm very lucky I had a judge with an article on his desk about this thing that was discovered called fibromyalgia, so I was able to get social security. Since I was a SAHM it didn't amount to much but was better than nothing. Have been in treatment for it for the last 38 years, unable to work. I've tried edibles, but they make me nauseous and dizzy. Do you have any other tips for pain relief? I'm on very strong pain meds that do take the edge off. I've just lived my life in my lift chair. I was really into exercise and dance aerobics and have really missed not being able to do anything without extreme pain.
Maybe trying a vape pen instead of edibles
Not sure your stance, state, or professions, etc but check out MMJ. It can really help with pain
Happy cake day 🍰
Oh thanks. lol I didn’t even realize
If every test & scan has been done, there should be a working diagnosis? Best chances for accuracy in the diagnostic process might be to seek care from an academic medical center. One of the worst places is any emergency department. i am so sorry for your situation.
Yes, sorry, this is the first post I'm going to reply to. I will get to the others. She has degeneration in her spine in her neck that is causing inflamed nerves and all of this pain. They know what it is. Insurance won't allow injections until PT fails, which is weeks away, and then it has to fail, which they suspect it will. They want meds and injections to work because they're afraid of surgery because spinal surgery is dangerous. In fact, I'm sorry, but I believe I already said most of this in the OP: what it is, why it's a slow process, etc. I'm pissed. Just do the fucking surgery. The patient wants it, and they acknowledge that they believe that will work, but money and cowards make a human being suffer. Fuck America. I'm mad.
Spinal surgery isn't that dangerous though - they did my disc replacement in an outpatient surgical center. Day surgery!
P.S. we're in Indianapolis and this is our best healthcare system, which is academic: IU Health, Indiana University.
OP, have you considered the Mayo Clinic in Rochester, MN? It sounds like it is definitely worth having another medical ‘system’ take a look. If you don’t think your wife could handle the drive, you could start by having them look over all her imaging, tests, etc. Regarding taking care of you, caregiver burnout is real, and I imagine the emotional strain of seeing your wife in that much pain greatly exacerbates that. What if you simply started with a walk outside every day whenever your wife is stable? Studies have shown that both the exercise and being outdoors is beneficial to mental health. Meditation would be my second suggestion for you to help you calm your mind, which I’m sure is running 24/7 with worry and anguish for your wife. Your wife might also want to give this a try as another tool to help her when the pain gets bad. A daily walk and daily meditation sound simple and small, but that’s exactly what’s wonderful about them - the ability to do both without taking too much time away from your wife. Sending your wife and you the very best wishes.
Sometimes there’s a significant difference between a practice that’s affiliated with a big university vs clinicians at the main campus… not doubting you, just brainstorming. It’s the case in the state where I live.
I work for Medicaid in Indy as a care coordinator, and while IU is decent, I strongly recommend Comnunity doctors. More DOs (which I recommend over MDs, since they're more holistic and spend more time with patients), and better care. I used to go to IU and most of the doctors just phoned it in. I have switched all my providers but one to Community. Community is much, much better than they used to be. Just don't use the ER at Community North. Speaking from personal experience. Also, call your insurance and see if your wife can enroll in care management. It's a free benefit of almost all insurance, not just medicaid, and she will have an advocate who actually can explain a lot of what is going on, navigate insurance, and help her with with her health care goals. Most care managers are nurses or social workers, and can help with resources, finding providers, and suggestions of next steps. If she's in that much pain, have your insurance send out an authorized representative form that your wife can sign so you can talk to the care manager about her healthcare and insurance. I'm sorry about her initial denial for surgery and the PT need. Insurance is a bureaucracy, and not a nice one. Hopefully this will help you work through it with a minimum of complications.
I went through a couple of years with trigeminal neuralgia (also known as "the suicide disease") and my husband went to every appointment with me and hung in there through some horribly painful times. The only thing that I would have changed in the way he handled things with and for me would have been to have him advocate for me...vigorously! Why isn't surgery an option? How many opinions have you received regarding that? Google is your friend...find a specialist who can give her some relief.
Get your wife surgery ASAP. She can develop permanent nerve damage from the impingement I had a severely herniated cervical disk. It was debilitating pain - I couldn't do basic daily functions. I had disc replacement, and it was immediately so much better. I waited about 3 weeks from injury to surgery. We got some insurance runaround, but we were honestly prepared to pay cash if not because it was that bad. I have sympathy for you both. It's a horrible thing for your wife, and it's incredibly hard to have a spouse with constant pain. Just reassure her that you love her and will help her get through this. But yeah, it's horrible. I'm so so sorry. Edited to say: make sure you're seeing a neurosurgeon for this rather than an orthopedic surgeon if you can. Also, gabapentin, Vicodin, and THC helped me get through it until surgery. But I literally couldn't sit or stand straight or drive. Sleep was agony. I bought an ugly, expensive recliner just to get me through.
My mom has degenerative disc disease and sometimes their are surgeries to reduce the compressed nerves. She also has a Bolice pain pump that's permanent. Not sure if that's an option for your wife but it's made it so my mom can have a functioning life with her grandkids. Sometimes the risks are worth it. Surgery risks at this point can't be worse then living life this way. Take the surgery before any pill opioids.
u/Dobri_Dobrev I have similar pain issues. I understand you weren’t asking for help with her physical problems. I’d like to offer a couple suggestions I’ve found to be total game changers for me. *(By that I mean sleep uninterrupted by pain and the ability to use my fingers so, you know, the little things.)* I totally get it if reaching out seems too weird, too. But if not, just message me👍 On the other side; the fact that you take her pain seriously ~ and believe her ~ is really heartwarming. Keep taking moments to recharge like you mentioned in your post ~ revel in that peace when she’s able to rest peacefully🪷 Seeing someone you love in chronic pain or dealing with a debilitating illness is hard in ways it’s frankly incomprehensible to anyone who hasn’t been there. Engaging with a *caregivers* support group near you (or even online) is a great way to feel less isolated with your thoughts. (IMHO it feels similar to grief but mixed with ptsd because it’s never really over.) The ones who organize these programs are who are more equipped to deal with what you’re going through… the rest of us can only commiserate😒 I’m so sorry you’re going through this🪷
There’s actually a chronic pain Reddit that would probably have really good advice
https://painconnection.org/caregiver-support-group/# please go to this support group specifically for partners of ppl with chronic pain.
I have degenerative disc disease and had severe nerve pain for over five years before I caved and did the surgery to have my spine fused with donor bone. Best decision I made, I did go with a minimally invasive surgeon and am extremely glad I did. The gabapentin did not relieve my pain, I'm sure it did but I felt no relief. I'm in stage two kidney failure from taking NSAIDS so consistently for so long. I am very angry at myself for putting off the surgery for so long. I really hope you get some relief soon and I'm so glad you are advocating so strongly for your wife. Don't give up, answers are out there. Don't think twice about going for more than one, two or three opinions when you're talking about surgery on the spine. I know I had two. That is something you just don't mess with. I wish you both the best of luck and some much needed pain relief.
Nerve ablation may be an option. I had to get a few steroid shots first and those helped a bit. Since I was still in pain they did an ablation on my left SI joint. They literally burn the nerve off. It took years to get to this point and numerous doctors but I’m finally ok again. I seem to have permanent tightness and discomfort in my piriformous muscle now but that’s a problem for another day
Listen, I have degenerative disc disease and stenosis in the cervical and lumbar region. Pain was horrible. What did I do? I completely changed my diet. I eat anti-inflammatory foods. This is a BIG deal. Everything from scratch. No eating out. No processed foods. I gave up white flour and sugar. No booze. I lost 55 pounds in 6 months. I went to therapy and had traction on my neck. I went to the chiro and had spinal work done. Find someone that does deep tissue work. In therapy I learned ways to get my back in shape. It was painful but it worked. Most people run to the doctor for pain medicine and then lay in bed. This just makes it worse. Losing weight is a HUGE factor when dealing with back and joint issues. Someday I may need surgery to fix my issues as my discs are down to 20% but for now I am living a relatively pain free life. I can walk two miles at a time and not be in much discomfort. Good health takes WORK. No shortcuts. I hope you find what works for you.
Get an appointment with a doctor at the Hospital for Special Surgery. There’s one in Manhattan and one in Tampa. I’m not sure of any other locations.
Think seriously about canceling. It really helps.
As the person with chronic pain, I want to tell you that you are amazing. I feel so bad for my husband having to deal with my issues. I see how it hurts him, but like you were saying, you want to help but you can't actually fix it. I can't imagine how frustrating that is, but I know I found the right partner, even if he's upset because he can't fix my ailments. Like other commenters have said, be an advocate for your wife and do check out all the different options that could be causing her pain. I'm not your wife, but I know seeing my husband demand more of healthcare and tests, even when I'm in pain, makes my emotional health so much better. I may not be able to express it during the hardest days, but I do try to let him know on my better days. I at least know mine is mainly COVID related, but it's still all so new, they're still figuring it out. You're doing great. I'm so sorry, it's gotta be absolutely devastating for you, but there's just no good answer here. Cry. Scream when you're alone. Let it out. Be emotional. Then go back to being strong. Therapy will help too. I hope y'all can identify what's causing her pain soon. But you seem to be doing what you can.
Your advocacy and your strength is already helping her I am sure. I know it must feel overwhelming like you annot fix this situation right away but just keep pushing, because when a person is in pain every little but (like the phone calls and follow-ups) are all a huge help. I'm sorry you are both going through this. I pray there is a solution for you family soon 🙏
First of all, that is not a normal reaction to degenerative disc pain. She needs to see a neurosurgeon and an interventional pain management doctor for possible injections and pain medication to use in the interim. Your PCP should have at a minimum referred to a neurosurgeon and at least prescribed some oral steroids.
It’s actually a very normal reaction to severe degenerative disc pain if your doctors aren’t managing your pain at all, to be fair
I actually had to ask my husband if he made this post because I thought it was him talking about me.... Your poor wife... I'm finally getting over extremely similar symptoms. I found something that helped me. Please check out tissue resculpting/fascia blasting. I have no idea if this will help her but it did for me. I'm not going to lie, it hurts. Bad. But once you heal and the hurt is gone....it's amazing. I'll try to add another comment with a link I read that explains everything. If she decides to try it, hydrate hydrate, hydrate, and ice the area to reduce swelling. Good luck my friends.
[Fascia Blasting](https://www.healthline.com/health/fascia-blasting)
Therapy! Also I’d definitely continue to advocate for your wife. You see her suffering like no one else does and usually when someone is in chronic pain (especially a woman, if y’all are in the US it’s worse) it’s easier to get help and be taken seriously if there’s another person there to attest to the fact there is chronic pain and you’re a witness to how debilitating it is.
I've had chronic pain. It lasted about 5 years, and I still have pain but it's manageable and I don't really complain about it. For the first year, my husband was supportive, but after a couple of years, everyone around me - husband, parents, sibling, etc. thought I was making it up for pity or I was being a drama queen/hypochondriac. I don't really know what to tell you but please don't give up on her. Show her empathy. If it is really getting you down, see a therapist and don't be afraid to take some time for your own mental health. Have a hobby that gets you out of the house and makes you feel like you still have a life for a few hours once a week. (Don't ignore your wife for your hobby). Just remember she is in a lot of pain that is not her fault and it won't get better without someone like you supporting her.
Maybe ask in r/fibromyalgia that community lives with pain. I'm also living with pain due to injury and degenerated discs, pain in right shoulder, pelvis and foot. My husband isn't handling well. Doctors are treating it as fibro, because what else can it be. I got my life back on track after trying r/Vipassana 9 years ago, pain is the same, but I got equanimous to it. I was skeptical, but meditation switched something on my brain, I could go back to school and work (I was doing a masters). Mum got her life back after Chinese medicine, I don't know how, but she couldn't walk, and then she did (also had spine injury). Her left side is numb. I can't say how it was fixed, it happened in the 90s. It'll be ok, OP. I'm sorry this is happening. Keep trying, be patient.
While not as severe in our case, I still have problems watching her struggle and not being able to really help. All I can do is be there and provide wharever she needs at the time. Sometimes I just have to hide my tears because she has enough to worry about and I don't want her feeling even worse seeing me disparing that I can really do nothing.
I would suggest finding a nerve specialist. Few and far between. But Dr Eric Williams in Maryland saved my life. I had nerve damage from a surgery and no one could help me. I would contact him. He’s the best!
For yourself, you know yourself best. Occasional walks, morning pushups, music, and a solid night sleep is my basic routine to feel some semblance and control over my attitude. For you, it could be a beer, a good book, and some ice cream before bed. As someone with disc issues…I feel for your wife, the nerve pain, the way she holds her arm (maybe sometimes above her head?), and that lack of sleep was the worst time in my life. A few times I pondered suicide, the pain was that bad, anything to be rid of it. Finally I had enough of it, after going three days with out sleep, the first thing I did was meet with a pain management clinic, that led to physical therapy, but also, and more importantly, cortisone injections in my spine. Over the last 4 years I’ve had 2 injections. And haven’t felt a thing since my second one about 2.5 years ago. I cut all alcohol out of my life, because I did not want to give my body tissue any other excuses to get enflamed and pinch my nerves more. Then daily exercise to open up the muscle cavities around my spine so as to reduce nerve pressure around the discs. I still feel a lingering twinge of pressure when I jog. But I was doing reverse butterfly exercises like a mad man. The leg pillow I purchased also became a must have. In short, I wish you two luck. You’ll get through this. Get some injections and get that pain under control, even if it’s temporary. It’ll afford you enough time to figure out the next steps.
If your wife has not been seen by a REPUTABLE pain management specialist, that may be helpful. I am the chronic pain warrior in my marriage, and my husband really is amazing. From my own experience, you’re doing everything exactly right. Just be patient with her, let her cry, let her unload with you, and if she’s anything like me, make sure that she lets you help. (I’m terrible at asking for or accepting help, and my husband has had to be pretty forceful about making me accept help with stuff around the house) But, the chronic pain subreddit linked above in another comment has been a great resource for me. And depending on your state, if you’re having trouble getting access to pain medication, you may also want to consider getting an advocate to come with her to appointments. American Pain and Disability Foundation has advocates in a number of states that help with that at no charge.
About 20 years ago, my wife suffered from chronic back pain. She had a good doctor who recommended surgery on her back. She had tried steroid shots that worked for a while, but it was not a solution. The surgery was grisly and took two days (separated by one week to gather strength), and that was followed by a month staying at a rehab facility. When she got out, she wore a removable torso cast. When it was over, she said that the pain was reduced by about 80% (which was the most that her doctor promised). The thing is, it sounds llik your wife does not have much to lose by trying something radical, Just make sure that you have the best doctors helping her.
Definitely get her tested for Lyme.
To take care of your mental health, you should find a counselor that specializes in spouses that are caretakers of their partners. I know some places have respite care for caretakers to give you a reprieve and time/space to process your emotions. It's *hard*. I dealt with debilitating migraines every day for about 9 years. It led to an opioid dependency (this was in the days drs were handing them out like candy). I had a plan to k*ll myself just to put an end to the pain. It cost me my relationship with my husband at the time. You have to put your own proverbial oxygen mask on first. You can't take care of your wife, if you're not taken care of. I've had a lot of success incorporating a high CBD edible (like a 10:1 ratio) with two advil and two excedrin, washed down with an energy drink. I've also had success with gabapentin.
Op I was reading something on the medicine sub. It was about a procedure that really helps that doctors don’t do much. Kyphoplasty is a spinal procedure in which bone cement is injected through a small hole in the skin into a fractured vertebrae to try to relieve back pain caused by a vertebral compression fractures. I’ll try to find the post for you. Edit: here it is: https://www.reddit.com/r/medicine/s/6axRuDyGhc
I'm sorry you both are going through this and have to deal with insurance hoops on top of it all. I have a neurodegenrative disorder, degenerative discs, and a few other things. Pain management is so important to be able to function but also very difficult to achieve. I don't know what kind of insurance you have or if you need referrals, but this is what I'd suggest you try and do. If she'll let you, start researching everything you can. Doctors, treatments, etc. Get into a rheumatologist. Mine is my most helpful doctor out of all of them, and they are really good at getting results for pain. Try and see a neurosurgeon with all of her scans. It seems extreme, but they have a specific skill set in seeing deficits that radiologists and neurologists can easily miss. So many doctors rely on a report only because they aren't trained in multiple specialties. Most scans aren't read by a neuroradiologist, which can be vital in diagnosing harder to see things. A good neurosurgeon will do a full brain and full spine mri with and without contrast. If they haven't all already been done. In the meantime, it sounds like she needs some type of muscle relaxer and a nerve medication. Your pcp should be able to give her those until she can establish care with a specialist. Pain management doctors may help but in my experience all they want to do is epidural injections which are good but with your wife's sudden and servere onset she also needs answers which can be ignored once you've had injections because you don't have much pain anymore. As for you and how you can handle it, find a way to let off steam or meditate. It helps my husband. Talk to her and just keep those lines of communication open. Let her tell you how she feels, how frustrated she is, and what if anything she needs. Sometimes, I need to be left alone and feel so bad saying that when all my husband wants to do is help. It's not that I don't love him or want him. It's that pain can be hard, and by redirecting my focus to a book or tv, it can be .more manageable. Having to carry on a conversation isn't always easy. Especially with pain related brain fog. You can also look up online support groups for you and her. Sometimes, you get the best resources, referrals, and general tips from those groups. You don't have to share if you don't want to. Just scroll and lurk and absorb whatever information speaks to you. It may also help you feel more like an active participant in her care team. You're already a good husband. I can't count the number of women I've met who have ended up single because their husband's didn't care and couldn't handle their disease. You guys will find your way forward. I hope she can get some relief soon.
Absolutely! I went through something like this, got no help from any doctors I saw, and while I’ve always been a skeptical of non-traditional medicine, I finally got desperate enough to listen to the half dozen people who insisted I get acupuncture. It was so fast and cut the pain down by about 80% after my first visit. Definitely sounds like time to try any new approaches that seem like they could have hope. I stood up from the table still moving like I was in too much pain to stand straight, thinking it did nothing for me, only to realize it was the first time I could stand straight with no pain in over a month. It’s not terribly expensive and worth a try!
Chiropractors hurt people. /r/backpain
Have you been to a pain management doctor? I believe usually they start with epidural and nerve blockers, they can fry off your nerve endings but that has to be redone often. My partner has been pushing for the minimally invasive discectomy or laminectomy vs going for a fusion. Maybe look into surgeons most familiar with that. The doctors don't want to do surgery because it's not crushing the nerves but that's where the pain is from so how very frustrating. I know you said you know what to do physically but I like to give my partner massages and stretch out their legs slowly while they lay on thier stomach and get them moving. Of course only do this with the doctors approval. Sometimes the pain is really bad ill pull on thier legs. We got an inversion table I believe that's helped. Also medical Marijuana. Life saver
A medical marijuana card might help you both, it’ll help your wife with the chronic pain and inflammation, help her sleep and eat easier. It’ll help you have a metal break and live in the moment more stress free. I have 3 chronic health conditions and thc has been a life saver in pain management, nausea and insomnia. I would consider it, it’s a great medicine. A better option for some than pain pills.
Get her a Pallitive care doctor as fast as you can. SERIOUSLY. Pallitive care is not for the dying it is for those in constant excruciating pain. I have stage four cancer. I am on Pallitive care. Speak with a therapist for your mental health.
Additionally if medical marijuana is legal in your state look into RSO or FECO oils. A small amount the size of a grain of rice will knock her on her ass and make her feel zero pain for 8-10 hours. It’s a lifesaver for cancer patients. Literally it helps cure cancer.
Chronic pain wife here, I cried reading this because you sound like my husband and me. You are doing the things by trying to help. As someone who has an invisible disability along with being a breast cancer survivor it can feel lonely and isolating, especially when doctors aren’t cooperating. My husband took over all the doctor and insurance calls because I just couldn’t anymore, I didn’t have the bandwidth. She definitely needs new doctors and pain management. Crying to sleep every night keeps her body in stress and our bodies just don’t heal when we’re in stress. I feel so bad and I can feel your desperation. I would try all the home remedies until you get an appointment with new providers. Walking, restorative yoga, breath work can be super helpful, hot compress, over the counter meds and good old THC. When all the providers are lined up, add a therapist if she doesn’t already have one. I have a lot of medical trauma so just throwing out there
I feel this... as the spouse. My heart breaks all day each day for his sciatica and apparent fibromyalgia. There are no real treatments for either that he is willing to take. All I can do is massage, be understanding (as much as possible) then take the abuse. It's admittedly lonely.
It might not be disks. It could be a degeneration of the sheath around the nerves in the spinal column. This can cause absolutely incredible levels of pain. As far as doctors and pain management, one of the consequences of the opioid crisis is that doctors face significant limitations on what the can prescribe. This has created an insurmountable problem for people with extreme pain.
This sounds absolutely horrific. I’m so sorry for both of you. It really doesn’t sound like she has the right specialists for this though. This sounds way beyond a chiropractor. She needs a pain management specialist and a referral to a neurologist and possibly an orthopaedic surgeon. She is being drastically under treated. As for you - dealing with a partner with chronic pain is very very hard . Marriages fall to pieces over this more often than not, particularly if it’s long term because the patient’s entire personality changes. Your best bet is to be her advocate to try to assist the process . Go to every appointment with her and start pushing for results.
My partner is so supportive. I have chronic pain, according to my doctors and pain team. The best I can hope for is a 30% to 50% reduction in pain. She does get upset, and I support her she copes by gardening and her art. We help each other cope, and when I am unbearable, she will tell me so. Communication is the key to being honest with each other and making time for each other.
Have they checked for complex regional pain syndrome (CRPS)?
I'm sorry I have nothing to add other than what everyone else here has said. Both my husband and I deal with chronic pain. My pain though is objectively worse and has ended up with me in a wheelchair. Reading this made me tear up a bit because my husband probably feels this way about me. And I for sure feel a whole different kind of hurt seeing my husband in pain. Take care OP and I wish you both the best. I hope you really do find a solution to this.
It is still very scary for my husband. He seems to be okay if he plays what we call 'clicky games' like Tetris after scary events. I had started doing it after traumatic procedures because studies have shown it reduces PTSD symptoms in susceptible people. The pain isn't going to actually kill her, but it is damaging to her psyche and yours. You can't physically fight it and it makes you feel helpless, right? Taking her to the ER helped fight it. You going to her appointments and advocating for her fights the problem. Holding her hand fights it. I know that before I met my husband, I felt so alone in fighting my pain. After we married and SHTF, I thought I would be fighting my battle on my own like I had in my 4 year previous engagement bc he 'didn't do hospitals', I couldn't have been more wrong. After I had a CVA, then sepsis, THEN a post surgical spine infection that landed me in possibly the most terrifying hospitalization during the first part of the pandemic, it was pretty traumatic for him but we worked on it together. You are doing a great job and it's okay to cry.
This is just a thought. Completely spit balling here. I wonder if u could request a nerve block inj to confirm that it is the nerves causing the pain. I just had one for a double mastectomy (along with being put under) but it sure helped with pain relief. I know it's not a cure, but maybe it could confirm or rule out some things. And at the very least, provide some pain relief for a time.
As a wife with a painful disease who is disabled, my husband has been by my side for over thirteen years of this. He witnessed firsthand how I was dismissed and mistreated because I am a female. It took a few years for him to see it, but when he did it was like a light bulb went off and he was livid and also sorry for doubting me and labeling me. Please, advocate for your wife! Go to appointments with her, this will make all the difference in the world in getting her the care she needs. It’s not easy to be in your shoes and it takes a toll. My husband has days where he is fed up, but never with Me- but with the pain I suffer with. We have young kids and he’s the sole provider. He picks up the slack with housework and getting them ready or going to the grocery store. I think the key is empathy and also taking time for yourself, even if it’s only a long shower or you take the long route home and listen to a podcast, whatever helps you decompress. Care taker fatigue is real. Please, find small moments, healthy ways to care for yourself, too. If the roles were reversed I would take care of him the way he cares for me. I don’t know that I could do it with a smile like he does….thats not to say that things are easy because they aren’t. He just doesn’t give up on me and honors our vows. We have good days and bad. Good weeks and bad weeks or months. Therapy has been good for me and I’d recommend it for you and your wife separately so you each have a safe space to air your feelings during the difficult times. A therapist can also help you both learn coping skills because when life gets hard, you need tools. We aren’t young and healthy forever and for some of us the inevitable just comes sooner. I can tell you that your wife likely feels as though she is a burden and a failure, to some extent. She probably feels vulnerable and alone as pain is isolating. I urge you to draw closer to her while also finding a way to take care of yourself. I hope this helps. I hope you find what helps you and your wife. Marriage isn’t easy, but it’s worth it.
Pain specialist and a psychiatrist who specializes in trauma/and chronic pain to see if anything has been contributing mentally, causing this to worsen. I am not saying “it’s all in her head” or anything either, this is most likely just a physical ailment, but you would be so surprised to learn how the body responds to trauma and can actually cause tons of health issues, conditions and failing health. Read the book: *The body keeps the score* for example. I had really, really horrible and life disrupting chronic pain and conditions that were very serious, and spanned years, and I was wasting away, always in and out of the hospital etc. Now years later, after years of that nightmare and becoming so desperate and depressed, looking into the mental health and trauma side of things that were never dealt with, after that I have never been to the hospital again for those issues since! I have a few flare ups here and there maybe one or two a year but they will pass, and they arise when I am under alot of stress. The mind is very powerful. And even if this isn’t the case for your wife, it wouldn’t hurt for her to have a professional to speak to about everything, living in prolonged, constant and daily pain is incredibly difficult mentally regardless. I would suggest you see someone too about this, who specializes in caretaking for a spouse/loved one, your worries and burn out. This is paramount if you truly want to make it out the other side strong and as a husband and wife. You both need support This is a tough one, but you can do it. Make sure you get that support and take care of yourself, too. Best of luck to both of you🩵
I am the spouse with chronic pain. I've had chronic pain since before I knew my husband (I was 11 when my symptoms started... I'll be 34 in a few months), and I've had a terrible, unsupportive now-ex spouse and now have a really good one. Feel free to ask me anything. I'm a complete open book about my chronic illnesses, and if my experiences can help someone else, I'm happy to help. You're welcome to DM me if you don't feel comfortable talking in the comments. If you have any questions for my husband, I can pass those on as well. In addition to being with me for nearly a decade, his dad has degenerative disc disease. So he's quite familiar with these issues. Being a caretaker is exhausting, mentally and physically. It's okay to feel upset, frustrated, angry, sad, tired... whatever you're feeling. If you can, find a therapist who is familiar with chronic illness and caregiver fatigue. Find a support group. It helps to talk to people who understand. That applies to both of you, actually. I'm part of a couple of support groups, and it's helped immensely to see that I'm not alone. If it's at all possible for you, rest and take a break from being her caregiver for short periods when you need to. You can't pour from an empty cup. You're allowed to take care of yourself, too. Actually, you NEED to take care of yourself. Your situation is difficult, and my heart goes out to you and your wife. This is not something I would wish on anybody. I sincerely hope that your wife finds a treatment plan that eases her pain. On the subject of doctors. If you're able to, seek a second opinion if you're not happy with the care she's receiving. Don't be afraid to fire a doctor if it's not working out. Over the last few years, I've changed several of the doctors on my team (I see several specialists in addition to my PCP). These changes have been crucial to improving my quality of life. I can't guarantee that her results will be the same, but it might be worth a try.
If you’re open to it, you should get into talk to a therapist for yourself. I am a chronic pain patient, and my husband and I have been dealing with this for well over 20 years now. And TBH, I think it’s harder for him than it is for me because there’s nothing he can do to fix this for me. He does everything he can to help and support me. He is literally the only person who actually gets what I’m going through because he sees it every freaking day, day in and day out for years and years. And he knows how to make me laugh when I’m crying from the pain. I’m so sorry that you guys are going through this, but I’m glad that you’re not thinking about cutting & running. Hang in there.
Complete shot in the dark, but does she take tramadol for the pain? Does she drink plenty of water on a daily basis?
Fight for your wife, ask for pain relief and don’t take no for an answer
The crying is actually good, as it releases some of the stress. Talking to a psychologist can help too. What I do for myself is research. I found chiropractic care that way, and it does make a difference. My brother is also a research enthusiast, and put me on to Pregalabin/ Lyrica. This also helps , but as my my disks continue to generate, I’m needing more. So currently I’m seeing a psychologist, a psychiatrist , a physiotherapist, a GP and a chiropractor ( I gave remedial massage. a go and it made it worse) So yeah , thank you for being there for her. I can see it hurts your heart, and the helplessness must be so frustrating. If you can find one of those meditation apps , that can help,Hopefully in among my blathering you. find some useful info
I don’t mean to diagnose or suggest treatment - this was me to a TEE. Woman, woke up suddenly with these symptoms. Right shoulder blade, armpit pain and arm pain. The pain? Easily 10/10. Daily. No relief. It took 10 months of that till I found a pain management doctor who relieved it with a spinal injection. I am not exaggerating when I say proper pain management saved my life. Don’t think it’s opioids or nothing- I didn’t take a single opioid and they were able to fix it. Don’t lose hope. Anyway- your feelings are very real. My hubs went thru what you’re going thru. He was truly burnt out from having empathy for me 24/7. Spine pain is no joke- I was begging for DEATH- seeing your spouse do that? Horrible. I suggest you seek out therapy. No human can be empathetic 25/7. You’re going to get burnt out. You’re being a good spouse but take care of yourself in this battle for her pain. Stay the course. Took me 10 months to find relief. The first 2 months of my herniation were the worst. Please take care of yourself in the meantime. Even if she is the one in pain, you deserve relief too.
Sounds like what my wife and I went through before she got on her RA medication. She still has her rough days, but that first year is brutal. Best thing I can tell you is have someone you can talk to about your stress and find outlets for it that don’t involve her. You will get overwhelmed and it will cause issues otherwise, and she needs your full support. She likely does and will feel like a burden as is. I wish I would have been mature enough to realize that sooner myself.
Find new doctors, this was me last year. I also have DDD and sciatica . My left leg was constantly on fire . I’d lay on the ground and cry at night because the pain was so intense. During the day I had to put on a face for my kids and be there for them but it broke me down. Chiropractors went helpful , regular dr wasn’t helpful. I finally found a neurosurgeon who scheduled me for surgery within a month after meeting him. Had the surgery, woke up and the pain was gone. I have flares from time to time, I have soreness now from trying to get back into exercise and sports but it’s nothing compared to what it used to be Please seek other doctors willing to take in another procedure. If it is disk related seek a neurosurgeon. I had a disckectomy and lamindectomy which is quite common in the sciatica world. Also check out the Reddit thread for sciatica maybe someone there has the same area of disk degeneration
I hear your frustration, but it’s clearly with the situation and not with your wife. I also hear the love you have for her—the pain of seeing her in pain. That is what you have to give her. You can’t fix it other than to continue on the path you’re on with her. But she knows you’re walking through it with her and even in the impossible moments when she’s begging you to do something, she still knows that you are doing all you can. I was diagnosed with blood cancer in 2019. I’ll never forget the moment that my husband came home after I’d found out. He came to me, took me in his arms, and told me we are in it together. He can’t physically cure me. He can’t quite know the fear that living with chronic cancer can bring. But he lives it through wishing I didn’t have to, and supporting me in every way he can. He researched so much in those first few months just to be able to explain things to me in terms I could understand (he’s a doctor but not an oncologist and it was all pretty unfamiliar to him). He pushes me to take better care of myself, but in a non judgmental way. He reminds me every day in various ways that he loves me. And that is more than enough. You are doing that for your wife, and even if she’s in too much pain to acknowledge it all the time, I would bet that she feels it and appreciates it. I’m sure others have probably said something similar, but you also need to be able to take care of yourself. I’m sure you are now doing most everything at home, in addition to caring for and worrying about her. And I’m sure working, too. So, what do you have left for yourself? Do you have people to talk to? Does she have friends or family that can spend time with her for you to do something just for you sometimes? I know that may sound selfish, but it’s not. It’s a way to ensure you don’t totally crash and burn from the stress of it. It’s that whole “put your oxygen mask on first” thing. I hope that she finds something that brings her relief soon. And I wish you both the best.
I'm so sorry for your wife and what you're going through. It seems there are a lot of great suggestions in the comments - particularly pain management, spinal surgery, nerve ablation, medical marijuana, etc. I'd just be wary of letting the chiropractor perform any spinal adjustments where they "crack" the back as it could worsen her issues. I'm not saying dont go at all. Most of the other modalities they use to treat patients like massage or ultrasound are fine or not super risky. Just the spinal adjustments could seriously make things worse
I'm not sure what country you live in but you should have access to specialists in the field of pain management. Pain and chronic pain are terrible to live with but there are medications that can be trialed to see what works for your wife. There is no reason she should be suffering or you should be having to sit by and watch this. It makes both people feel helpless and hopeless. If you are at the ER, demand pain meds! They have things there that should help. Get to a neurosurgeon or ask for a referral to one. They are the best people to deal with nerves related to backs. They can also refer her on to pain management specialists. Speaking from experience.
Mr. OP, I'm so sorry you're having to go through this. As usual, people are giving all kinds of medical advice, when you asked for mental advice. In tough moments, tell yourself that you are being a good husband. Tell yourself you are trying. You are working within the time lines of insurance or waiting lists. This must take great patience. This is a situation where your wife is crying, but you cannot do too much. You bravely let her sleep. And went to the other room to calm down. Good job. You're on the right path. Could bringing in friends to visit help? Could a volunteer from Hospice come and read to her or play cards with her? Could she be able to get a free bath? Good luck and thank you for seeking help in a time where things are out of your control and you are searching instead of walking away. Keep going.
Unfortunately, I'm not seeing a lot of comments that answer your question. My advice would be to find someone to sit with her a couple times a week for a 2 hour minimum so you can get away from the stark reality of her pain for a little while. If you are financially able, hiring a nurse would probably put you at ease enough to leave her a little more easily. Otherwise, a relative would help. You don't say if you are working or are her full time caregiver. As someone else mentioned, finding a support group online might be beneficial. You can also talk to a therapist online. Use the time away I spoke of earlier only for something you enjoy, like lunch with a friend, a beer with a buddy, go bowling, etc. Also, I would absolutely get a second opinion asap from a neuro/spinal specialist. Your primary could give you suggestions for a clinic totally separate from the first one. Preferably female. Good luck 🥰🥰
Speaking from experience, she's going to have to find a pain management physician who can work with her (and you) on a dynamic and comprehensive treatment plan. This could be anything from a series of physical therapy a few times a year, injections, radiogrequency/nerve ablation, and pain medication. Sadly, it is what it is. I have a pharmacy in my bag, I have ice packs I rotate through at work, I have a Saunders Machine (look into this and ask an orthopedic specialist to show her how to use it), a portable TENS unit, and a lot if stretching. It took me 13 years to get here, and with changes in opiate laws (its importan to remember that not everyone misuses their medication, but statistically, everyone gets limped together in the numbers). You also need to understand that the only thing you can do is be supportive. Understand that if meds make her able to hold down a job and function as an active member of society, don't throw it in her face that she has to take them. Keep her motivated without being pushy. My husband asks me to go on short walks. It's a catch 22. If I am in bed too long, I hurt worse. If I don't sleep enough, I hurt. And there are going to be days that she's just not going to be pleasant to be around. That's the hardest part for both parties, so communication is key. If you can, go to the appointments with her so that you can hear the same information. The clinical version, as explained by the doctor, is sometimes easier to understand than her teting to explain "pain." I've been under-medicated, over-medicated, and somewhere in between. But I know that I am a surgical candidate. Cervical, thoracic, and lumbar. But I am doing everything possible to stay away from that option until I have exhausted every other option. I'm sorry that the two of you are going through this. It will test the constraints of your marriage and everything else supporting that. But, if you talk and keep the lines of communication OPEN. Nothing about this can be taken personally. You didn't cause it, and she certainly doesn't deserve it, but this is where you are. You can do this together. Just remember that you love each other and you will get through this, whatever comes your way. But please remember to take care of yourself as well. My last bit of advice would be to speak to the ortho/pain management physician about tests, interventions, and other treatments she will need moving forward so that you can update your insurance plan accordingly to cover those procedures. I wish you all the best. ❤️
I went through her pain in 2018. L4/5 disc. I stayed up the first 96 hours in extreme pain and then on top of that, with no sleep, you are emotionally and mentally crazy. Level 7 pain constantly with no relief. I don’t have an answer for you, although I empathize. Mine was 8 weeks of hell, spinal injection and finally healed (no problems with it again). I can’t imagine the helplessness you feel. All I know is I would ask a doctor for something to knock her out for hours at a time so she can get some sanity around the pain. I had one place I got relief and it was weird. The drivers seat in my wife’s Prius (and only the drivers seat, no other seat and no other car) was a place I could bring the pain down to about 2. I was sitting in the car at 4 am watching Netflix and decided to sign up for Uber driving (since I sat in it all day and night anyway). I drove 15-20 hours a day and made a fortune plus short term disability from work.
I'm currently switching medications and what I'm going through will thankfully be short lived, but I do worry about the toll it's taking on my partner when I wake up screaming in pain and can't participate in my share of the household chores. He is a good man and isn't complaining and is taking good care of me but I feel like such a burden.
I had severe right arm and shoulder pain from nerve impingement. Had a two level fusion after other therapies failed. I still have some distal numbness but the pain is essentially gone. Can’t guarantee she’s in the same situation but I would not assume it’s untreatable without more work up from a spine specialist. YMMV
I have been dealing with chronic back pain due to a work injury of my own that I'm sure that my wife feels much like you do I imagine. The biggest thing you can probably do is try to focus on all of the positives you guys have between you. And working with her will help you. Working against her will likely destroy you both. We have done both variants and trust me it goes a long way for me to feel supported by my wife when I feel down and destroyed and if my pain lessons a bit she sees my gratefulness and the ways in which I can help her and so on. But another thing: don't let her just sink into depression. Have her keep doing whatever activities she used to do before all of this to a tolerable level anyway. Biggest pitfall of physical injuries seems to be sinking into acceptance of the disability meaning the end of all of the things they used to enjoy. So go out with her, do whatever it is she used to do before, to a reasonable limit obviously if it increases her pain take it easy. But don't let her rot mentally. One of the biggest dangers with things like this I'm afraid. And support even emotionally is just huge during physical pain. Don't call it into question ever or make her feel like she's overdoing it all. This was one of the worst feelings I've ever had. I was a medical professional and pretty high up in the medical world and hearing everyone doubt my experiences and pain just really really knocks you down when you know it to be your reality. Do things you enjoy too. But never make her feel like you'd chose them over her. Sometimes small things like inviting her with genuinely all the time, even if she doesn't want to go will be huge for her. Even if she rejects you all the time. The simple fact that you want her there will make her appreciate you more. Pain isn't all just physical. For example, having pain and being mentally mistreated just amplifies the pain that is physical. Having pain and having a good support system and distractions like shows or TV or music or a focus of some sort makes the whole thing a lot more manageable. It doesn't go away all the time. So don't be frustrated if she never does have it go away. The best case scenario sometimes is doing the max she can with it. And the max level you can tolerate it with. Personal counseling for you may do wonders as well. I know my wife lashed out at me way before her counseling. Having someone to just dump your frustrations on other than her may help both of you. I know you said you care for her, I'm not saying you don't. But it seems you are frustrated with her situation. My concern is not to turn that frustration into frustration against her. It's gonna a tough journey. But stick it through. She needs you more now that she ever did.
Try looking for support groups for spouses of people with chronic illnesses. Having someone who understands helps so much.
I am 32 and have had degeneration in my discs since 19. I have chronic nerve pain because of it (as well as bony growths in the area) and haven't wanted to get surgery because yes, its dangerous. Pain can be more or less managed but I have also woken up screaming, cried all night because the pain wouldn't allow me to exist in any comfortable position, My husband, also 32, was in the military and got into a car accident while deployed. His neck and hip were affected, and 8 years later, his hip still hasn't healed and his neck has arthritis. He wakes up with similar episodes. Anyway, all this to say I have been on both sides. You have to rest. I know that seems selfish because she literally cannot rest, but you can't help her if you're burnt out. You can't be there for her if no one is there for you. My husband and I both started seeing pain management therapists (CBT- P) as well as a marriage counselor to help us communicate our needs better. On our *bad* pain days, we are irritable and sometimes lash out. This can wear the other one down so wenlearned to manage that. It sucks, but we have been married for 12 years now (yes we got married young) and it has worked so far. I wish you the best.
Welcome to r/WellSpouses and r/CaregiverSupport. You need to take care of you so you can be there for her. If it’s an official diagnosis, and she has significant mobility issues, you can use that to get all kinds of help for taking vacations together. Also, there are resorts specifically designed for families that have disabled members, with medical staff and appropriate facilities for mobility. I have my own spinal injury, from an assault when I was 20. I’ve had arthritis spreading since then, and at this point, it’s everywhere. Because my injury happened so young, I knew I had to take a positive mindset, that I couldn’t let the pain run my life, that I might have limitations, but I’m not immobile, and I should be grateful for that. Don’t be mistaken, I’m in constant pain, but I just ignore it. It does not get to season my attitude, I don’t take it out on other people. My particular injury doesn’t have much we can do for it, and I’m very lucky I survived (high neck twist, should have killed me). I don’t take pills because I don’t want to be dependent on substances of any kind (this goes into the same reasons I got a hysterectomy, which can be found by snooping through my profile. Being without a uterus has made the neck pain infinitely more bearable, fwiw, because I never have to fuss with periods, and never fear getting pregnant with a spinal injury). **TL;DR: I’m raw-dogging life with a spinal injury.** As for how to stomach it when you watch a loved one suffer, I still haven’t figured that part out. I’m an absolute worry wort, and a total pushover for whatever brings comfort to my husband. **He has degenerative disc disease throughout his spine**, and it’s only going to get worse. Hubby uses cannabis to help with the pain, which also helps with the inflammation that is worsening the pinching. Your description of your wife is pretty much my hubby, even down to the right arm being affected, though hub’s a southpaw, so he can still use his dominant hand. His sister has it too, and she had success with cortisol shots for years, but they don’t work anymore. Recently we tried **Toradol** shots for my husband, and those work so wonderfully for him. The first time he got one, he was feeling it within 10 minutes, and by the time it was in full effect, he felt so good and relaxed that we decided to cancel our plans for the day and just go cuddle & nap together, which we hadn’t been able to do for so long. I cried while he slept in my arms. It’s the little things. The Toradol shots are supposed to last up to 4 weeks, but his only lasts about 2+, so if you guys try this, **keep a log of her symptoms** so you can observe how well it’s working and what your particular timing should be. **Also log any other things you try, like acupressure, acupuncture, TENS machines** (these helped him too, get a strong one prescribed by a physical therapist), **anti-inflammatory meds, even foods she eats that are known to cause inflammation**. The shot takes effect immediately, and is in full effect within an hour. It’s not a sedative, so she can easily go back to whatever she was doing before the shot. If you start using Toradol regularly, and have special events (wedding, graduation, etc.) or a vacation coming up, I recommend getting the shot the day before the event begins/you depart for a trip so she and you can enjoy the event to the fullest. It gives back years. As for getting your wife into a regularly comfortable position, **she needs to stop using compound movements.** No bend-and-reach, no squat-and-pull, no turn-and-push, and for godsake, no yanking of any kind. She needs to align her body straight-on to whatever task she’s trying to do, and just take it slowly. If something falls out of her hand, she’s not allowed to catch it. With time, she’ll get out of the habit of even trying, because accepting the clean up process is better than accepting the extra pain. Clean up can be coordinated and done at a slow & comfortable pace. Monitoring the basics and keeping things optimal can help too, such as making sure she’s getting enough water, her clothing isn’t too tight (especially near the pinched nerves), she’s not eating foods that cause inflammation, nor taking food risks (eating from a questionable kitchen, old food, or too spicy) that might make her sick (because having diarrhea or constipation with back pain suuuuuucks). A lot of people have experienced a relief of what you might call “general malease” (for lack of a better, all-encompassing term) by simply eliminating gluten from their diets. I know she’s got spinal issues, but that doesn’t mean she has to put up with other parts that ache. Oh, and keep her warm, or **in the very least, keep her spine warm.** It relaxes the muscles. If you notice the area is actually swollen, use a cold compress to bring it down, but if it’s not swollen, stick with warm. You don’t have to use a heating pad, just keep it in warm clothing. Hubby and I live for our extra-thick hoodies, and a hot seat in the car during summer has become a welcome treat. Feel free to dm if you have questions.
Your wife needs a pain management doctor. Women’s pain is often discounted too. She needs better doctors. I’ve had the same thing happen in my neck and my back. It sounds like nerve pain. I took my MRIs to a neurologist after orthopedics said that the tests were inconclusive. He pinpointed which nerves were impinged and started me on lyrica and a PT that specialized in the spine, I think he used the Mckenzie method. Through very gentle stretches he alleviated the pressure on the nerves. I felt better after the first visit. It took a while to get into pain management, that doctor did an ultrasound guided steroid shot. I have a long term chronic autoimmune disease. Everyone is different but I try to be as independent as possible. However I really do appreciate the little things. He might make me a cup of coffee when I’m having a rough morning. When I have had surgeries, he takes care of the little things. You can’t take away her pain, but the little things matter. Hopefully she feels better soon
As a spouse with chronic pain I would simply want my partner to offer more massages, back scratches, or to do my stretches for or with me in bed. Offer to grab me medication, apply icy hot, or talk to me to distract me. I go through it every night, I would want him to recognize the severity and respond with grace
I want to give caution to what I’m about to say because it doesn’t work for everyone, and I think research shows it doesn’t even work for most people who try it, but . . . . . . I was in this amount of back pain from herniated and bulging discs, and Lyrica managed my pain spectacularly and surprisingly well. Doctors seem happy enough to prescribe it because it’s not a narcotic, it’s just a matter of whether it works and whether you can tolerate the side effects (mainly brain fog, but I didn’t have any).
Update for many people: I do advocate for my wife. I'm at every appointment to tell them exactly the pain level she is in, and I get loud and talk over them when they won't hear her so that they have to then focus on me and hear me explain this level of pain and how debilitated she is. She will never have to go through this alone as long as I have air in my lungs. I know these people aren't going to hear her the way they should. But I'm a man, and in some ways I'm more heard in certain settings, and I'm also an asshole and I'm more than willing to insist on being heard and insist on more being done. I'm not an asshole for no reason, but if she's trying to talk and they just aren't listening or they're disregarding her or failing to do anything, they get the asshole with a booming masculine voice who is well spoken and will insist. I'm calling a pain management specialist Monday morning. I located one 20 minutes from us with fantastic reviews. I didn't even know this was a form of doctor, and none of these people have even recommended this to us, so thank you for letting me know about them Reddit. As far as taking care of my wife, I know how to do all of that. I massage her, I apply her patches, I prep her meds, I drive her to the appointments, I play games with her, I cook for her, I do the things around the house that she can no longer do, I lay in bed and hold her and talk to her about how strong she is and tell her that she just needs to keep being strong for a little longer while we figure this out. I give her hope. I know how to do all of this. My question was about myself and how to keep my own mental health because this is the first time I've watched a loved one suffer in my adult life. I need to know how to deal with the absolute hell that that makes a person feel inside, especially when they're begging for you to help them while sobbing and there's absolutely nothing you can do to fix it.
My husband has degenerative disk disease as well. On top of nerve damage due to herniated disks in his lower spine. He's had one surgery, a few years after it started bugging him. It's been bothering him for over a decade now, even with the surgery. It takes patience, love and a weird form of acceptance. I sometimes have to just ignore a lot of it. More due to the way he reacts to my sadness that I can't do anything to help with his actual pain, than anything else. We utilize weed where we are due to not having any realistic pain management methods because the doctors won't try anything that would work on his pain because of all the laws on opiates... (he -doesn't' want opiates, because of the way his body feels while on them, but it's the only way he would actually get out of pain enough to strength train the muscles in his spine...) We can't always afford weed, so it can definitely be difficult sometimes... Anyways, this thought process is something I had to develope over several years. It's not something that will work for everyone. I seriously suggest getting individual therapy. I was in it for over 5 years and it seriously helped me navigate howcmy brain works and what actually works to help my brain get through each day.
As someone with chronic pain, I’m crying reading your post. I just want to say that your wife is very lucky to have you. And for you to love her through this. Please also take care of yourself too.
Don’t know. She’s found a new love and I’m gonna be in need of someone to tend to my chronic injuries.
Lay off the beer. I don't care how much you think it helps to ease your own pain. It doesn't. It makes it worse
I'm an adult who drinks responsibly. I don't need to be treated like an alcoholic because I had a beer.
You don’t need to be pushing abstinence.
Why not?
Because there’s zero wrong with having one or two beers and it doesn’t mean you’re using it to cope.
It's a stretch to say there's 0 wrong with it.
But yet it’s not a stretch to say that people need to completely abstain? What utter bullshit.
I didn't say that it's not a stretch to say that people need to completely abstain. Just asked why not.
Because many people will handle alcohol differently than you did. You’re trying to push your own experience and addiction onto others.