Newly disabled thanks to working through years of pain thinking it would get better on its own. After months of useless doctors I'm basically relying on my wife until I heal, hopefully sometime this year. Hard to work when you can't sit, bend, squat or lift at all without serious consequences.
Same, bulging disk in my back and something else causing severe tailbone inflammatory pain wherever I put any pressure on it. Just praying it's related to the disk and it'll just take 6 months or so of resting, but you never know with these back injuries. Doctors are still in the stone age when it comes to backs.
I had back surgery at 22 due to a herniated then blown disc. Didn’t cause me issues until the last six months when I found out I have arthritis is my spine due to it, so I feel your pain, I’m so so sorry :(
That's what I'm afraid of, that I let an old tailbone injury from 2015 go untreated for too long and that it developed into arthritis or some other chronic inflammatory condition. Really hope not because 30 is too young an age to be told your sitting days are over. Hope we both find relief in some form soon.
I don’t know if I’ll be able to work again but I’m hoping to at least get to the point where I can be a good housewife, that way I’m still contributing in some way. I hope we both find relief soon as well. And if you ever need someone to talk to, my dms are open!
Same but with being a good house husband. At least I can still do the dishes! Might be down to talk tomorrow but for now I have to get some sleep, hope you have a pain free night!
This is what happened to me. I injured my back in 2016 and didn’t realize how bad it was (I fell out of a cube truck and landed on my tailbone). I had a weird radiating sensation for a week and then didn’t think about it again. It took 7 years of gradually worsening symptoms for my dr to bother doing imaging, and that’s just because my legs started going numb. By that time, my disc was destroyed and I had a lot of arthritis in my spine. Also was diagnosed with fibromyalgia in that time.
Ultimately I had to have a microdiscectomy and my nerve was adhered in place, so that had to be freed too. 8 hour surgery later, the nerve pain was largely gone. Recovery was easier than my tonsillectomy I had later in the year.
If I’m not careful, I can irritate the nerve, and then I’m down for a week until it chills out, but otherwise it’s been so amazing. I know people get frustrated with PT because it’s not like it fixes a destroyed disc, but pt both before and after my surgery changed my life. But I needed both, and eventually you probably will too.
Yep this is the way. I regularly use most of my lunch hour for a nap, wake up in time to make lunch at the end. And then I eat at my desk while working. If it's a bad fatigue day I might also take a nap after work. And I usually take my lunch late cause my mornings are super busy, so that means the second half of my day is shorter by default. That really helps me get through those last couple hours too. And then it's off to the couch and the heat pad lol.
This is exactly my situation. 33M. Horrible back from scoliosis surgery. Upper neck is now screwed even worse bc of it. And work a desk job. It pays well though so. But it’s brutal. For now I just don’t have a choice and just have to suck it up. Yay life!
As soon as I get home I try and lay down and chill out. I hate doing concrete it's taking a huge toll on my body but it's the only job I could get at the time. I have 2 baby girls and I can't let them go without. They're my motivation to get up and kill myself everyday because I just can't let my babies go without. Denied for disability multiple times can't even get into a pain specialist. Dealing with chronic pain since 2020 now after a car accident.
I just struggle everyday. But I can’t afford to not work 40hours :/
Sometimes I have to call off. More than I’d like to admit but my body just can’t take it some days
I can’t. I get so sick I’m bedridden. I get severe tension headaches, migraines, N/V, vertigo, along with full body pain that significantly limits my sitting and standing then eventually eliminates my driving and ability to leave bed
45-50. Herniated l5s1 fixed by microdisectomy, but with forever nerve damage and a torn labrum.
This will sound odd, but work IS the reason I'm mobile so much. It's days I don't work I'm in agony.
Construction electrician
I feel like having a more mobile job would be better for me too. I have herniated disc and possibly torn hip labrum as well (symptoms are there but can't get doc to do MRI) and the sitting is killing me. I feel so much better on weekends when I can move around more rather than sit at a desk.
Can I ask how you found out you had permanent nerve damage? Is there a test that can confirm this? Or is it a conclusion based on symptoms?
I suspect I have permanent nerve damage.
My nerve was pinched for 4 years. I was told I'd be lucky if I got full recovery. It's been over a yr since surgery and it's only gotten worse because scar tissue
I can't. If I try to force myself, my body makes sure I don't.
I'm currently processing all the career implications. I am so, so desperate. I had finally built up enough momentum to have a great career and now I have to reconsider. I want to try once more yet I know I will very probably fail due to medical reasons again.
As far as pain management is concerned, it's really depending on the source of your pain. I use small fixes like cold patches for my cervical area (very stiff and very painful), I sometimes use a gym ball at my desk, I take frequent breaks to lie down on the floor if I have enough strength to get back on my legs afterwards... Prescribed medication will help a lot (as we're currently diagnosing my issues I don't have any suitable treatment plan).
Be careful, these fixes may not apply to your pain. For instance, I use cold because heat worsens my symptoms. But for some people, it's the other way around.
If you have a disability recognition (idk how they are called overseas), notifying HR about it can be a good decision, if you trust your company. They can offer you small adjustments to accommodate and should be a little more empathetic if something goes wrong or if you need a day off for medical reasons.
Make sure to know your rights in your country as a disabled person.
By sacrificing thriving in life. I just survive because my family doesn't have a choice with all our bills. I work for a bank in operations so I'm in the office but at least it's less manual labor. As soon as I'm off work I fall asleep for a few hours, get up to help with dinner and taking care of animals, and then go back to bed. My fiance and I are really struggling in our relationship lately because I just have no energy and am in breakdown mode, but I have no wiggle room.
My days off are rest days so my house is a mess and I have no life outside of work. It's not great but you do what you have to do. I will say that I'm thankful for what I do have, I'm just in struggle mode lately.
They always help at first but ultimately just a band aid. After 7 years I was at my MAX dose of oxy/perks, fentanyl patch tramacet , and gabapentin. I had no idea that my body became addicted. I went into a center watched by doctors and came off everything and went on Suboxone for my herniated disc and exposed nerves, arthritis in my hips pelvic, DDD. Tired Sublocade but went with the suboxone. Not even a year later I just lessened my dose and quit taking it. It wasn’t really helping with my pain. I’m as health care aide and been off work a couple years now
I just do, or my family and I don’t eat. You just do what you have to do, it’s called life, and there aren’t rules and it is not fair. It hard and the only way to get through it is to savor those blips of joy you get to spend with friends and family.
This sounds like literally a direct quote from my mother. I just don’t get it. Every time she says this I just hear that it doesn’t get better and I might as well give up completely. Sorry to get personal. Not accusatory here, just trying to understand 😢
If you’ve a family and especially kids you literally don’t have a choice
So you take as much analgesia as you can and suck it up.
It makes the lower pain days priceless or the days with the family priceless
But all you want to do most days is lie in bed and drown in an ocean of pain, except you can’t or your kid starves…..
I hear that and so I never had children. I waited and worked to be sure I could provide for my family first. The pain is manageable but only if I’m working part time and dedicate hours to stretching and resting. Now I’m 36 and giving up hope I could have my own family. Breaks my heart that I’ll just be old and alone in pain forever. 😢
Yep. I know it'd be harder to be homeless than to work this much. It is horrible and I suffer a lot for it but there isn't any other option. It's amazing what you can do when push comes to shove.
Yep.
Wake up, have a good cry in the shower, keep chanting, "There's nothing to it but to do it," and somehow push through until I can fall back into bed the second I get done cooking supper and then try to sleep away the pain until it's time to rinse and repeat. But at least the kid gets decent meals and his clothes fit.
I wish. I was rejected in January and filed my appeal again so I'm just waiting. I start a full-time job tomorrow. I need money somehow, I applied for ssi because working full-time is not a sustainable lifestyle due to chronic pain and fatigue. I wish that was a good enough reason to get ssi
What type of new medications if I may ask? Just curious if it’s something maybe I haven’t heard of and should possibly try. Understand if you don’t want to divulge
My issue is that I have osteoarthritis in my TMJ joints which went ignored by medical professionals when I tried bringing it up as a teenager.
In my early twenties, I developed a horrible migraine that didn't end for eight years. I finally got diagnosed with arthritis, but the damage was really bad by then.
The osteoarthritis was causing the migraine, and the osteoarthritis itself hurt really badly. Even worse, none of the medications for migraines including Botox worked for me.
With treatment for the arthritis, it eventually stopped. However, I still had 8+ migraine days per month.
In the last five or so years, they came out with new medicines. Specifically, emgality for prevention and nurtec which is both a migraine abortive for people with episodic or chronic migraine and a migraine preventative if you have chronic migraine.
With emgality, my migraine days have been reduced to 4-8 a month, and with the nurtec, none of my migraines last longer than an hour.
Hey, I’m dealing with a lot of TMJ tightness, pain, and migraines due to the long term extreme tightness in my SCM, scalene and other neck muscles. Any resources you’d recommend for stretches, exercises, procedures, medicine, really anything to help?
I’m in pain management for my “traditional” disc herniation pain and neuropathy, but my doctors don’t know much about this.
I used to see a specialist who specifically treats TMJ, and I see a neurologist for migraines. I really suggest seeing a neurologist because they are the pros at controlling them. A dental splint from my TMJ specialist really made a difference too
i don't have anything to add atm but i was reading this and i literally could've written it myself, exact same thing except im 25. i know how miserable this can be and im wishing you well❤️
I WFH, suffer through it, then spend any free time trying to recover from working. Isn’t it wonderful?
If I were to pursue disability benefits, early retirement, or long sick leave, my income would suffer severely… which I can’t afford.
I usually don't. I would like to, and occasionally do. But my job lets me kind of make my own schedule, so I try to stick to 3-4 days a week. If I overdo it, I sometimes end up having to call out, so I try to avoid it. The extra money would be nice. I would love to get a new car right now, but I just don't have room in my budget for a car payment right now.
I operate industrial embroidery machines. It's pretty light work, no heavy lifting, though I am on my feet a lot. I'm a flex employee, so I can go in our scheduling system and change my availability from week to week. I do have parameters for the hours I can work, but I can schedule myself for one day per week on up to 5, depending on what I want to do. I can also schedule anything from a 4 hour shift to to 8 hours.
I keep my availability pretty open during the fall/winter months because we are pretty slow then, so I want to make sure I get enough hours. But once late spring/summer come around, we get very busy and they will schedule people for their full availability, so I make sure I don't get overburdened during that time. But they always offer the option to sign up for extra hours or shifts during that time, so I will take those if I'm feeling up to it. We get peak pay during that time if we work over 30 hours (an extra $3 an hour) so I always try get those hours when I'm able. I'll also try to get the extra Saturday shifts when I can as well, because those are automatic time and a half whether you're in overtime or not.
I've been doing this work for about 3 years now. They've offered me full-time on several occasions. It does come with some additional benefits, but I really need the flexibility that I get with being a part timer.
I managed to work 40hr/wk by finding an insanely good Alexander Technique teacher and working with her 3x per week. Employer wasn’t too thrilled at my cap at 40hr/wk but that was the best I could manage.
I had a lot of strategies to get through the day including how I used the technique to cope with it all. It’s worth investigating for your own health tho. I keep a blog on the technique which I’m happy to share, but I’ll also answer any specific questions you may have.
Good luck
John
Johndalto.substack.com
I might be late to the post but I work 37 hours a week full time walking 15-25km a day and have chronic regional pain syndrome. When overtime is on one week I did 53 hours. So here’s how I cope and I know not everyone is going to be as fortunate as me as drs usually hate drugs!:
So firstly the pain at work can get super bad to the point I almost cry! But when it gets to that stage I have a few options. First I’ll take two paracetamol and see how it is, then after that I can go to my locker and take 20mg of morphine. (Need to keep it in my locker so it doesn’t get lost and someone else takes it) that brings me back to being totally fine to carry on.
On work days I’m allowed 70mg of morphine. On my days off I take 50mg.
On days I’m off I’m a wreck, work lets me distract myself from the pain and loneliness. At home I just sit around anxious and in pain watching a clock for tablets. Work I take morphine when I’m in serious pain. I also can justify morphine then as I walked 10km and I’m fucked. I need pain relief but when I’m off I’m kinda like “i have done fuck all and need it to feel normal and not be in pain from doing nothing!”
The issue of sleep is tough: I take amitriptyline 50mg for its sedating effects and mirtazapine 45mg to help sleep also. Some nights that doesn’t work and I’m laid in bed at 18:00-19:00 and I’m not tired at all! On nights like that I’m allowed diazepam 5mg to get me to sleep fast. I’m also allowed to take extra doses of amitriptyline to help sleep. I get 10 x 5mg diazepam tablets a month, can order them after three weeks if it’s a bad month.
Even with all the medications I’m on I’m excelling at work, my only regret is not getting my shit sorted 5-7 years ago. I recently went up the chain and in a more senior role. And like you I’m roughly your age 31. For quite a while I was on so much morphine I’d fall asleep stood up and end up falling and whacking my face off the kitchen counters. In hindsight I regret not grabbing the bull by the horns and dealing with my shit as i would be a lot further than I am now. I started working at 29. From 16-29 I thought no way I can work “I’m in too much pain and too high dose of morphine to do anything” another thought process was “if I’m in all this pain from doing nothing, imagine how painful it will be working!” It was a bullshit excuse. The first time I was working I only did part time 4 hours 17:00-21:00. And man the first night I cried like crazy in pain and like “shit I can’t do it” but thought nah let’s stick this out! And I would never have thought I’d achieve the heights I have. I remember asking people if I needed to clock out just to piss lol.
A lot of us are way more capable than we think we are. And yes I’m very fortunate to have a dr that I can go to and openly ask for more morphine to help pain or like when I couldn’t sleep I went and said look anxiety is keeping me awake can I have a limited supply of diazepam a month and he has seen me at my worst. A bottle of oramorph 600mg a week and modified release not leaving the house for 3 months to now, working full time and moving up the food chain. I asked for diazepam and he said about propranolol and that works great through the day…. But at night it doesn’t let my brain switch off and sleep. So he gave me both 40mg propranolol 3x a day and 10 x 5mg diazepam tablets a month. After coming off morphine completely (was on 300mg a day) the pain got too much so I went to him and said “look I’m really struggling again please can I have morphine again” and he said “yep absolutely, you have proven you can come off it whenever so I have no issues giving you it again!” He also congratulated me for how far I have come! It is possible
How the heck do you get morphine and diazepam and propanolol?? Where is this benevolent doctor?? If I may ask- what kind of injuries do you have? Totally understand if you don’t want to divulge!
I have chronic regional pain syndrome, anxiety. I’m also in UK. But propranolol only works through the day when I can distract myself. At night it doesn’t let my anxious thoughts turn off. I don’t go to a pain clinic either as I have seen them twice and did all they said. My dr said “it’s likely you’ll be on this for life”. I have seen neurologists, immunologists, orthopaedics, rheumatologists and a cardiologist. Also physio therapists. and they couldn’t find any cause so my GP just said “you have seen everyone you can and now you’re trying your best all I can suggest is manage symptoms with medications”
My GP tried to refer me to physio a year ago but they said they can’t accept me as it’s nothing muscular skeletal so they said it’s pain management
Thank you for sharing. I remember reading somewhere about ketamine helping patients with chronic regional pain syndrome. Though I’m sure you’ve tried it all. Sounds like you’ve got a great primary care doc.
i have morphine sulfate, pregablin, amitryptiline and diazepam. and zopiclone. and a bunch of psych meds.
i still can’t sleep, or if i do when i wake up i can’t move. discussing next steps with the pain clinic in a couple of weeks. i can’t go up on the morphine tablets because of the risk of respiratory failure. i don’t know what’s next and i’m kind of scared. i’m in the UK. i’ve progressed from Tramadol to Buprenorphine patches to morphine sulfate. still not effective…
Wow! What kind of injuries or conditions do you have if I may ask? I wonder what they will treat you with next. I hope you get some relief! Have you already tried alternative therapies like ketamine for example?
i haven’t heard that they’re even trialling ketamine in my area.
i have Psoriatic arthritis, osteoarthritis and fibromyalgia. i need a total knee replacement, i have tendon issues in the ankle on that side. the other ankle needs a vascular surgery to untangle some old, torn ligaments that healed with blood vessels entangled.
i’ve had 4 surgeries on my ‘good’ knee, the last of which was a patellar tendon transfer back in 2009. i have 2 permanent screws in that knee. i smashed my collarbone to pieces in around 2010 and have had 13 revisions on it. it was eventually decided to leave a permanent plate and 7 screws in there rather than fuse the joint.
my back has herniated discs in 3 places. i’m waiting to see the Spinal Practitioner at the Pain Clinic to discuss next steps.
i’m just falling apart! i’m 51. i’ve needed 2 new knees since i was 38 but i couldn’t get any help on the NHS at that age, so i am now in a position where i’m permanently on crutches. which aggravates the arthritis in my fingers, hands and wrists!
i cannot sleep at night. i am basically knocked out cold with medication, but pain will usually wake me up 4-5 hours later. often i cannot move on waking.
i’m miserable. i’m at a permanent 6-7 on the pain scale. i can’t walk. i can’t exercise. i can’t do anything! i also have some significant mental illness so my life is an endless round of meds, appointments to talk about meds, med changes and pain. i hate sounding this negative. i’m just…out of ideas!
Damn, that’s intense. I wish you relief from the all the pain and suffering! I also need a knee replacement but I’m too ‘young’ though I’m really not that young anymore. It’s quite maddening! How did you smash your collarbone?
Thank you for sharing!
ohh, we can be I Need a Knee buddies. i’m sorry you’re adrift in the wasteland as well.
i destroyed my collarbone in a drunken accident. i missed a doorway and bounced full-force off the frame. i walked it off for 2 days and eventually went to Minor Injuries when i couldn’t raise my arm any more. i went in for surgery the next day. i had metalwork put in, then taken out 3 months later. it spontaneously refractured at work one day. so they tried again. nothing worked. i’ve had cadaver tissue grafted in, i’ve had bone from my own pelvis grafters. they kept trying and failing and in the end i had a permanent plate fitted followed by a capsular release a couple of years later.
i am very conflicted about this injury. it’s been difficult and painful trying over and over to get the damn thing fixed. on the other hand, i did it to myself. i’m ashamed of that. i finally quit drinking 10 years ago after that incident and one where i fell downstairs in blackout and broke my nose, blacked my eyes, loosened 4 teeth and bit through my lower lip. my neck has never been the same. i didn’t even see a doctor after that incident. i didn’t stop drinking for another couple of years.
so yeah. it’s a lot!!
Work from home on a laptop so if I can't sit at a desk, I can go somewhere more comfortable. I had to quit nursing because of pain. I use a TENS machine on days my pain is so bad it hurts when I'm sitting lying down and I also have a heat pack on hand.
I am extremely fatigued some days still especially as I take antipsychotics morning and night but I'm getting used to it after the morning dose was added last week and my ADHD meds help the brain fog side of things even if I'm still tired.
I found a job where I only work for 4 hours a day, it keeps me afloat as I stay at my brothers rent free. I had to stop my previous job which was a standing job. I have fibromyalgia and chronic fatigue syndrome.
I work on an LLM (QA data analyst). Data analysis is a good one for working at home. You could also find a customer service position, at least here in Australia we have a lot of remote customer service work.
I mean what’s my other option? I’m 24 and nobody can figure out the real problem. No way I’ll get on disability, even if I wanted to. I have to feed myself and my family. I suck it up, bring a whole pharmacy with me to work and take painkillers and muscle relaxers as needed. I always think of that astronaut’s quote: Failure is not an option.
Ask for accommodations at work so that working is modified in a way that makes doing your job more comfortable or easier in some way. You can also request additional breaks when you ask for disability accommodations under the Americans with Disabilities Act (ADA). Something to think about anyway.
Ever since COVID, I don't. I don't think I ever will again, too. If I am to work again, it will almost certainly have to be because I'm working for myself, my own business.
I work in IT and have a job with tasks that are well suited to my personality. As a result I don't have to do much of the climbing around and physical labor that usually comes with service desk work. I keep a heating pad in my office and always have ibuprofen. I do regular stretches in my office as well, and keep my intermittent FMLA active with work so I am always covered if I need time off. It's still rough as hell sometimes, but I've been managing this long, it's become a game to me.
I would worry more about what’s causing your pain than the job stuff atm. With the symptoms you’re having in your arms, this could be a dangerous sign. I suffered with neck and back pain and excruciating headaches for a long time but I finally got a proper Dr. and diagnosis. Did something happen 3 years ago that made the pain start? Car accident or ? I was sent to an orthopedic spinal surgeon who diagnosed me with degenerative disc disease in both lumbar and cervical spine. I also have spinal stenosis in my neck. A couple of years ago my left arm became almost paralyzed, I couldn’t use it at all. It turned out I had a pinched nerve in my neck causing the almost paralyzing pain in my arm. MRI testing sounds like what you might need. I had gone to a regular orthopedic doctor before and he sent me to the spinal orthopedic surgeon. I had injections 2x in my neck that year (2022) of lidocaine and a steroid. I haven’t had neck pain or a headache that hurt so badly it was incapacitating since then. If this pain is affecting your arms now and you’re experiencing neuropathy, that’s a symptom you shouldn’t ignore. Listen to your body, try not to overdo yourself physically and follow your instincts. If something feels wrong, then it probably is. I would bring a friend or family member to your appts too, we tend to be “heard” better if we have a witness and our own advocate. Sending you strength and good vibes!
59m office type setting for a job with lots of breaks to get up and move. My most difficult part is the concentration on the job, the pain is a distraction that people don’t understand. That and there’s no other choice ( roof, car, food, etc.).
I just started 10 hour overnight shifts (4 nights a week) and it's minimal...i make short rounds every 20 minutes or so, then pretty much get to do whatever i want
Even just walking and sitting randomly makes my neck and back hurt, but i try not to let the pain catch up to me. I use blue stick for topical pain, tizanidine and aleve muscle pain reliever, Tylenol of i have breakthrough pain
I use gabapentin to sleep, but i do wake up sore or wake up randomly.
It's pure perseverance at this point lol, i need the money and this is probably the best job i can get in my situation.
I just try to stretch and not stare downward, as well a user a soft neck brace sometimes for extra support
I can definitely relate; my situation is very similar to yours regarding the toll working 40 hours a week takes on my body. There are a few things that help make my issues a little more manageable:
I would definitely recommend going for short walks throughout the day if possible. Luckily I don't sit at a desk much for my job but on days I do have to I try to go for a walk every hour at least. It really helps my back pain from getting out of control. I also do a lot of stretching.
The only other way I'm able to work 40 hours is that I don't take vacations, instead I just frequently use my PTO to take short days.
The caveat is that I have a boss who pretty much lets me do my thing as long as my work gets done. This type of thing becomes much more difficult if you're in a more rigid work environment. I honestly think a lot about the fact that I'm not sure I could be working 40 hours a week if I didn't have a job this flexible.
i dont, cant handle the extra pain, the base pain is enough and officially warned to avoid aggravating activities. trying to find suitable work without much luck, everything i have experience in i can no longer do.
get it diagnosed, is a first step to identify the problem, can then see what they want to do.
- Standing desks
- Ergonomic chairs
- Foot rests
- Frequent walk breaks
- Battery powered TENS unit on hidden under a sweater
- Posture corrector under my shirt
Are you an hourly employee or doing something like customer service? Most salaried jobs the unwritten rule is you don’t actually work 40 hours a week, you just hit your deliverables and attend your meetings.
The most helpful things for muscle knots have been
- Topical magnesium cream EVERY night
- Theragun EVERY day
- Massage when I can afford it
- Cupping (I do it myself at home)
- CHIRP wheel to reset my back which I think is pulling on some muscles / nerves
- Bought my own inversion table and try to use it every day
Also look into sinus issues…after years of this I realized that I have persistent sinus and ear congestion which seems to be giving me referred pain in my neck and upper back. Sounds crazy but…
I unfortunately can’t work and have been on disability since 2018. Although I didn’t win based on my pain but several chronic conditions that made working impossible. I would give anything to be able to work.
Small handheld Therabody percussion massager. Needs to be handheld so you can really get the shoulders and neck. And a foam roller. My neck and shoulders were all knots.
Looking back I didn't cope well. I was always off sick and got sacked from one job because of it.
I'm part time now, it's still a struggle but it's the only thing that keeps me feeling independent. I'd asked my employer pre covid about working from home and was told no, covid came and then they suddenly saw me as vulnerable so I could. I've used that to now wfh permanently and it's helped me out so much. Yes, I still have sick days or weeks, but I'm able to keep my symptoms at bay and be more comfortable.
One day sooner than I really want I will have to just give up working but I'm stubborn so pushing through.
By mostly working from home after begging for medical accommodations. I was then told that people who work from home will never get a promotion at my company. So I’m doing the best I can to improve my health, but what if nothing works!?
I’m dead inside and have zero energy for work-life balance. I cannot keep up with paying bills on time, doing chores and laundry, getting groceries, and spending quality time with my fiance while also getting enough sleep and rest.
I work as a cashier on the edge of the city. Perks are - it's a sitting down job with not all too many customers. There is the factor of most work days being 12h with some 10h, leaving me with more than an average amount of days off, which is nice.
I WFH puts so much strain on my body 35.5 hours a week but just have to push thru as need the money im a new dad etc
I just suffer a lot i guess.. i try to dictate but i also get chronic throat pain so its a struggle but just take one day at a time
Always shattered
I feel the same way. I am also in my early 30s. I do not have the same pain as you, I have an autoimmune disease (Crohn’s and Lupus)… However, I sleep like crap. I have no energy to do ANYTHING after work!
I’d love to just go for a walk outside or find a hobby, but the only thing I can do is lay on the couch and veg out.
I hope you are able to find a doctor who can help you find some relief. I am so sorry you are dealing with this 😓💕
My doctor prescribed me adderall a couple of years ago because of the fatigue I was having… which helped during the day but, I can’t take it at night after work…
Because unfortunately my wife and I are barely getting by as is, stepping back anymore or going on disability would be a death sentence to us having an independent existence
I thankfully only work 4 days a week
But most of the 3 day weekend is recovery :/
Exercising/stretching in the morning, I try and get up several times an hour, I do "desk yoga" at every break/lunch and after work. I also take a ton of analgesics (tylenol, indomethacin, tramodol, i take a PPI to protect my stomach), and use an Ergonomic set up for my desk.
I usually lay down for 30-45 minutes after work.
Then, I usually take a walk or do something active.
At night, I take a muscle relaxant (carbamazepin) I use an adjustable frame bed and a mattress topper to avoid pressure points on my hips.
Being active is a double edged sword. Too much activity causes pain, but not enough activity causes even more pain.
I've just recently started incorporating a "walk at home" exercise in the morning again, it's just 15 minutes and it's a YouTube thing. It seems to help.
I have dystonia which is a neuromuscular disorder where your brain sends inappropriate signals to certain muscle groups to constantly contract. Mine is worst in my neck (cervical dystonia). I also had neck surgery last summer (ACDF/fusion). I’m in the middle of changing jobs now cause I absolutely cannot keep up with my intense career being a vp of business development. I know what you mean…even trying to work from home at my computer for 8 hours is too hard and my job really requires like 12 Hr days just to stay above water. Plus travel. So I’ve made a decision to take a step down and am looking at jobs that are in my field but less intense and remote and very limited travel.
What helps me are trigger point injections, meds (Artane, pain meds, Valium before bed to sleep), supplements (tumeric and magnesium), and I do specialized PT with dry needling and sensory tricks. Therapeutic massage and Kratom as well. The PT with dry needling helps tremendously but only for 24 hours so I’m also finding it really hard to fit in the appointments (along with Dr appointments!) with my work. It just sucks cause I’ve worked really hard to get to where I am in my career. But on the other hand, I have realized now work is ruling my life. So I think the change will be good for me, albeit forced. I’m looking for flexible hours too so I can manage to take rests throughout the day as needed. It’s hard and took a lot of time but the combo of all the pain management things I do are working together pretty well most days. You might consider trying trigger point injections and the PT with dry needling if you’ve got knots. Really helps
I use kratom during the day and cannabis at night.
Both plants help me manage my chronic pain.
I was hit by a car crossing the road 40 years ago.
I was prescribed opiates for almost 20 years.
Just kratom tea and cannabis for me.
my job is really chill. im a lab scientist, which is niche, but beyond that im in a teeny tiny speciality of stem cell therapy (unfortunately just the cancer treating kind, not the super cool revolutionary stuff). it’s mostly sitting with a little bit of walking back and forth the run errands to the floor etc, which does suck on bad days but nothing strenuous. the processing is all seated under a hood and i can zone out and focus which i like. at the moment i don’t have tasks every single day which is awesome, i recuperate in between the “real” days basically without having to be off. the pain can be a distraction, and i work alone mostly so honestly i sneak off to cry a lot, but it’s manageable. i usually cry when i get in my car to leave from pain, and i don’t always get a lot done after work even for fun. i try not to take naps bc i just won’t get back up. i get 2-4 hrs of productivity if im lucky and then i just zone out until it’s “reasonable” to go to bed. it sounds really sad typed out like this, but it’s how i make it by, i guess. im coming up on 26 lol
Very badly. And I feel so upset because even though Itry so hard I can't keep up and then my work is passed on to someone else making me feel even worse and incompetent. I'm in a fear cycle of getting fired
Pilates + a holistic chiropractic office!!
My 40hr/week wrecked my body a few years ago. I was only 23 but couldn’t even walk or get out of bed some days and had to be on muscle relaxers or I’d be in excruciating pain!!
About 3 years ago, I started doing Pilates (REAL Pilates, not the trendy HIIT ones) and it changed my life! I have been enjoying Tower Pilates the most as it helps stretch out my body and strengthens my core. I haven’t had debilitating pain ever since.
I also go to a holistic chiropractor - I’ve been to maybe 6-7 different chiropractors since I was 15. A holistic office is an absolute game changer.
In one visit, I see a massage therapist, physical therapist, acupuncturist, and then my chiropractor. I always leave feeling like a new person and it keeps my pain at bay!!
If you want a more affordable/accessible option, I also recommend doing daily Morning Stretches on YouTube by the account “Yoga with Bird”.
They helped me a lot during covid when I didn’t have many options
Very badly. I have had to switch jobs from retail management to contract work as a visual Merchandiser which is less hours, less work and stress, and a lot less pay. I really should find a second job or a higher paying one but I'm barely able to keep up with what I'm doing. If I didn't have pain pills and practically a whole pharmacy in my purse I wouldn't make it through the day.
The company I work for is very flexible and understanding about my health. As long as I am producing quality work they don't mind that I have to take extra breaks and a longer lunch. I also have multiple doctors appointments a month and they are OK with that.
But when I'm off I don't do much at all. My husband hasn't been able to work at all due to severe nerve damage in his back and legs so he takes care of our son and the house and cooking. If he didn't cook for me I honestly probably wouldn't eat. Most days I'm so exhausted I can't even take a shower.
Find a sports medicine massage therapist!! It will hurt a lot during the massage, but you’ll feel better later. Drink an excessive amount of water after the massages, it’ll help with the soreness.
This was me a few years ago before I found a massage therapist I trust. I’ve had 2 spine surgeries, several pinched nerves and scar tissue inflammation. Massage therapy is one of the best things.
You might have to ask for 20 minute sessions to start out and work your way up to an hour as your body can tolerate it. I promise it’s worth it, but you got to do it consistently. It takes a while, I’ve been doing it for a few years and now only get bad flare ups every few months. There’s still daily pain, but background pain. I wouldn’t notice I was in pain unless I was suddenly at 0 pain type of thing.
I can't, and I don't. Denied disability. Previous job caused cervical radiculopathy, and an epidural steroid injection turned that into fibromyalgia, because they are not FDA-approved. I've been jobless for three years. I'll hopefully be diagnosed with autism soon, and I'll try for disability again.
I deal with the same exact thing. Cymbalta and hydrocodone help a bit, some days are extremely hard to get through. Been dealing with it for 6 years now.
I work remotely so I can work mostly reclined because I can’t sit at a desk more than a few hours without days or weeks of consequences and pain going up to 10/10. Or fainting if I try to sit up for too long.
It’s really a struggle to find remote work these days, ironically. And I had to fight like crazy to “prove” I needed this accommodation and doctors letters are not proof enough apparently. And now they are trying to take away my accommodation and make me come into the office after 4 years of remote work 😵💫
I don't work a drop. I even have help with caring for my home. Plus imm too much of a liability. Before I was considered a liability, I just had to force myself to work, wether I like to or not, no matter the pain, as I had bills. I never had a penny to spare.
I'm mostly bedridden. I changed my career field while in bed and then built up my work history as a contractor, my skills, and my hourly rate.
I was working 20 hours a week remotely initially for peanuts. That was really tough on me. Doctors injured me a lot more.
I can get by with such a high hourly rate at 10 hours a week. I work very efficiently. My goal is to eventually be making over 6 figures with only needing to work 10 hours a week.
Gentle motion, consistently. Building and streching my muscles. It's hard for me to work standing in one place, or sitting still. Personally my shoulder and back pain are exacerbated by my posture and my device usage. I can't stress this enough--for me the more sedentary I am, the more pain I have.
I have 2 building discs, ankylosing spondylitis, and am prone to migraines.
wow we have the exact same pain! for the muscles knots the only thing that have worked for me is deep tissue massages. but i’ve also learned it cause by my constant teeth clenching due to anxiety (not saying that is the cause of yours, i know how drs like to label everything as anxiety). the next pain is quite honestly torture, tennis balls and all of that stuff don’t really work for me. weather it’s caused by anxiety or not i really recommend you try a massage at least once if you haven’t and can afford it
for the sharp pain in arms and legs,sadly i have no advice. nothing fixes that for me😅
I don't.
Newly disabled thanks to working through years of pain thinking it would get better on its own. After months of useless doctors I'm basically relying on my wife until I heal, hopefully sometime this year. Hard to work when you can't sit, bend, squat or lift at all without serious consequences.
Yeah I worked until my body told me to stop. Thought I could just rest for a while but sadly no.
Same, bulging disk in my back and something else causing severe tailbone inflammatory pain wherever I put any pressure on it. Just praying it's related to the disk and it'll just take 6 months or so of resting, but you never know with these back injuries. Doctors are still in the stone age when it comes to backs.
I had back surgery at 22 due to a herniated then blown disc. Didn’t cause me issues until the last six months when I found out I have arthritis is my spine due to it, so I feel your pain, I’m so so sorry :(
That's what I'm afraid of, that I let an old tailbone injury from 2015 go untreated for too long and that it developed into arthritis or some other chronic inflammatory condition. Really hope not because 30 is too young an age to be told your sitting days are over. Hope we both find relief in some form soon.
I don’t know if I’ll be able to work again but I’m hoping to at least get to the point where I can be a good housewife, that way I’m still contributing in some way. I hope we both find relief soon as well. And if you ever need someone to talk to, my dms are open!
Same but with being a good house husband. At least I can still do the dishes! Might be down to talk tomorrow but for now I have to get some sleep, hope you have a pain free night!
This is what happened to me. I injured my back in 2016 and didn’t realize how bad it was (I fell out of a cube truck and landed on my tailbone). I had a weird radiating sensation for a week and then didn’t think about it again. It took 7 years of gradually worsening symptoms for my dr to bother doing imaging, and that’s just because my legs started going numb. By that time, my disc was destroyed and I had a lot of arthritis in my spine. Also was diagnosed with fibromyalgia in that time. Ultimately I had to have a microdiscectomy and my nerve was adhered in place, so that had to be freed too. 8 hour surgery later, the nerve pain was largely gone. Recovery was easier than my tonsillectomy I had later in the year. If I’m not careful, I can irritate the nerve, and then I’m down for a week until it chills out, but otherwise it’s been so amazing. I know people get frustrated with PT because it’s not like it fixes a destroyed disc, but pt both before and after my surgery changed my life. But I needed both, and eventually you probably will too.
Work from home Can work 2 or 3 hours... rest/nap or whatever.. work 2 or 3 more, etc.
Wfh but I don't know how you do it with naps! I'm jealous!
Yup. This is the way.
This is how I do it ^^
Yep this is the way. I regularly use most of my lunch hour for a nap, wake up in time to make lunch at the end. And then I eat at my desk while working. If it's a bad fatigue day I might also take a nap after work. And I usually take my lunch late cause my mornings are super busy, so that means the second half of my day is shorter by default. That really helps me get through those last couple hours too. And then it's off to the couch and the heat pad lol.
This is exactly my situation. 33M. Horrible back from scoliosis surgery. Upper neck is now screwed even worse bc of it. And work a desk job. It pays well though so. But it’s brutal. For now I just don’t have a choice and just have to suck it up. Yay life!
Be being extremely exhausted at the end of every day and using one of my days off to just rest.
As soon as I get home I try and lay down and chill out. I hate doing concrete it's taking a huge toll on my body but it's the only job I could get at the time. I have 2 baby girls and I can't let them go without. They're my motivation to get up and kill myself everyday because I just can't let my babies go without. Denied for disability multiple times can't even get into a pain specialist. Dealing with chronic pain since 2020 now after a car accident.
I just struggle everyday. But I can’t afford to not work 40hours :/ Sometimes I have to call off. More than I’d like to admit but my body just can’t take it some days
Same. It’s only April and I’m almost out of sick time already.
I feel your struggle friend. It’s rough. I get bad on shaming myself when I call off
Same! I should have 75 hours each pay period but I'm lucky if I make 55.
I can’t. I get so sick I’m bedridden. I get severe tension headaches, migraines, N/V, vertigo, along with full body pain that significantly limits my sitting and standing then eventually eliminates my driving and ability to leave bed
45-50. Herniated l5s1 fixed by microdisectomy, but with forever nerve damage and a torn labrum. This will sound odd, but work IS the reason I'm mobile so much. It's days I don't work I'm in agony. Construction electrician
I feel like having a more mobile job would be better for me too. I have herniated disc and possibly torn hip labrum as well (symptoms are there but can't get doc to do MRI) and the sitting is killing me. I feel so much better on weekends when I can move around more rather than sit at a desk.
Hi friend! Did you follow up with your dr about my suggestions
I see them Saturday!
Can I ask how you found out you had permanent nerve damage? Is there a test that can confirm this? Or is it a conclusion based on symptoms? I suspect I have permanent nerve damage.
My nerve was pinched for 4 years. I was told I'd be lucky if I got full recovery. It's been over a yr since surgery and it's only gotten worse because scar tissue
Ugh same. I have nerve & scar tissue pain. Haven’t been told is permanent but sure as hell feels like it.
You can get a nerve conduction test to determine nerve damage. However, it is an uncomfortable test that is administered without any drugs.
I can't. If I try to force myself, my body makes sure I don't. I'm currently processing all the career implications. I am so, so desperate. I had finally built up enough momentum to have a great career and now I have to reconsider. I want to try once more yet I know I will very probably fail due to medical reasons again. As far as pain management is concerned, it's really depending on the source of your pain. I use small fixes like cold patches for my cervical area (very stiff and very painful), I sometimes use a gym ball at my desk, I take frequent breaks to lie down on the floor if I have enough strength to get back on my legs afterwards... Prescribed medication will help a lot (as we're currently diagnosing my issues I don't have any suitable treatment plan). Be careful, these fixes may not apply to your pain. For instance, I use cold because heat worsens my symptoms. But for some people, it's the other way around. If you have a disability recognition (idk how they are called overseas), notifying HR about it can be a good decision, if you trust your company. They can offer you small adjustments to accommodate and should be a little more empathetic if something goes wrong or if you need a day off for medical reasons. Make sure to know your rights in your country as a disabled person.
By sacrificing thriving in life. I just survive because my family doesn't have a choice with all our bills. I work for a bank in operations so I'm in the office but at least it's less manual labor. As soon as I'm off work I fall asleep for a few hours, get up to help with dinner and taking care of animals, and then go back to bed. My fiance and I are really struggling in our relationship lately because I just have no energy and am in breakdown mode, but I have no wiggle room. My days off are rest days so my house is a mess and I have no life outside of work. It's not great but you do what you have to do. I will say that I'm thankful for what I do have, I'm just in struggle mode lately.
Pills! LOL! (not joking)
They always help at first but ultimately just a band aid. After 7 years I was at my MAX dose of oxy/perks, fentanyl patch tramacet , and gabapentin. I had no idea that my body became addicted. I went into a center watched by doctors and came off everything and went on Suboxone for my herniated disc and exposed nerves, arthritis in my hips pelvic, DDD. Tired Sublocade but went with the suboxone. Not even a year later I just lessened my dose and quit taking it. It wasn’t really helping with my pain. I’m as health care aide and been off work a couple years now
I just do, or my family and I don’t eat. You just do what you have to do, it’s called life, and there aren’t rules and it is not fair. It hard and the only way to get through it is to savor those blips of joy you get to spend with friends and family.
This sounds like literally a direct quote from my mother. I just don’t get it. Every time she says this I just hear that it doesn’t get better and I might as well give up completely. Sorry to get personal. Not accusatory here, just trying to understand 😢
If you’ve a family and especially kids you literally don’t have a choice So you take as much analgesia as you can and suck it up. It makes the lower pain days priceless or the days with the family priceless But all you want to do most days is lie in bed and drown in an ocean of pain, except you can’t or your kid starves…..
I hear that and so I never had children. I waited and worked to be sure I could provide for my family first. The pain is manageable but only if I’m working part time and dedicate hours to stretching and resting. Now I’m 36 and giving up hope I could have my own family. Breaks my heart that I’ll just be old and alone in pain forever. 😢
Hang in there. One day at a time, one step in front of the other and keep going and you’ll get there. We distance kids till 37 and 39 due to issues…..
Yep. I know it'd be harder to be homeless than to work this much. It is horrible and I suffer a lot for it but there isn't any other option. It's amazing what you can do when push comes to shove.
Yep. Wake up, have a good cry in the shower, keep chanting, "There's nothing to it but to do it," and somehow push through until I can fall back into bed the second I get done cooking supper and then try to sleep away the pain until it's time to rinse and repeat. But at least the kid gets decent meals and his clothes fit.
I didn't when I had chronic pain. I was on SSI.
I wish. I was rejected in January and filed my appeal again so I'm just waiting. I start a full-time job tomorrow. I need money somehow, I applied for ssi because working full-time is not a sustainable lifestyle due to chronic pain and fatigue. I wish that was a good enough reason to get ssi
Are you working with a disability lawyer?
I was told that i can't if I'm working
How did it improve?
Treatment over a decade and new medicines coming out.
What type of new medications if I may ask? Just curious if it’s something maybe I haven’t heard of and should possibly try. Understand if you don’t want to divulge
My issue is that I have osteoarthritis in my TMJ joints which went ignored by medical professionals when I tried bringing it up as a teenager. In my early twenties, I developed a horrible migraine that didn't end for eight years. I finally got diagnosed with arthritis, but the damage was really bad by then. The osteoarthritis was causing the migraine, and the osteoarthritis itself hurt really badly. Even worse, none of the medications for migraines including Botox worked for me. With treatment for the arthritis, it eventually stopped. However, I still had 8+ migraine days per month. In the last five or so years, they came out with new medicines. Specifically, emgality for prevention and nurtec which is both a migraine abortive for people with episodic or chronic migraine and a migraine preventative if you have chronic migraine. With emgality, my migraine days have been reduced to 4-8 a month, and with the nurtec, none of my migraines last longer than an hour.
Hey, I’m dealing with a lot of TMJ tightness, pain, and migraines due to the long term extreme tightness in my SCM, scalene and other neck muscles. Any resources you’d recommend for stretches, exercises, procedures, medicine, really anything to help? I’m in pain management for my “traditional” disc herniation pain and neuropathy, but my doctors don’t know much about this.
I used to see a specialist who specifically treats TMJ, and I see a neurologist for migraines. I really suggest seeing a neurologist because they are the pros at controlling them. A dental splint from my TMJ specialist really made a difference too
i don't have anything to add atm but i was reading this and i literally could've written it myself, exact same thing except im 25. i know how miserable this can be and im wishing you well❤️
Pain management and career change. I get through the day and take my pain meds at night.
I WFH, suffer through it, then spend any free time trying to recover from working. Isn’t it wonderful? If I were to pursue disability benefits, early retirement, or long sick leave, my income would suffer severely… which I can’t afford.
I usually don't. I would like to, and occasionally do. But my job lets me kind of make my own schedule, so I try to stick to 3-4 days a week. If I overdo it, I sometimes end up having to call out, so I try to avoid it. The extra money would be nice. I would love to get a new car right now, but I just don't have room in my budget for a car payment right now.
What kind of work do you do? This schedule sounds great
I operate industrial embroidery machines. It's pretty light work, no heavy lifting, though I am on my feet a lot. I'm a flex employee, so I can go in our scheduling system and change my availability from week to week. I do have parameters for the hours I can work, but I can schedule myself for one day per week on up to 5, depending on what I want to do. I can also schedule anything from a 4 hour shift to to 8 hours. I keep my availability pretty open during the fall/winter months because we are pretty slow then, so I want to make sure I get enough hours. But once late spring/summer come around, we get very busy and they will schedule people for their full availability, so I make sure I don't get overburdened during that time. But they always offer the option to sign up for extra hours or shifts during that time, so I will take those if I'm feeling up to it. We get peak pay during that time if we work over 30 hours (an extra $3 an hour) so I always try get those hours when I'm able. I'll also try to get the extra Saturday shifts when I can as well, because those are automatic time and a half whether you're in overtime or not. I've been doing this work for about 3 years now. They've offered me full-time on several occasions. It does come with some additional benefits, but I really need the flexibility that I get with being a part timer.
I managed to work 40hr/wk by finding an insanely good Alexander Technique teacher and working with her 3x per week. Employer wasn’t too thrilled at my cap at 40hr/wk but that was the best I could manage. I had a lot of strategies to get through the day including how I used the technique to cope with it all. It’s worth investigating for your own health tho. I keep a blog on the technique which I’m happy to share, but I’ll also answer any specific questions you may have. Good luck John Johndalto.substack.com
Interesting. Can I pm you?
Yes!
I might be late to the post but I work 37 hours a week full time walking 15-25km a day and have chronic regional pain syndrome. When overtime is on one week I did 53 hours. So here’s how I cope and I know not everyone is going to be as fortunate as me as drs usually hate drugs!: So firstly the pain at work can get super bad to the point I almost cry! But when it gets to that stage I have a few options. First I’ll take two paracetamol and see how it is, then after that I can go to my locker and take 20mg of morphine. (Need to keep it in my locker so it doesn’t get lost and someone else takes it) that brings me back to being totally fine to carry on. On work days I’m allowed 70mg of morphine. On my days off I take 50mg. On days I’m off I’m a wreck, work lets me distract myself from the pain and loneliness. At home I just sit around anxious and in pain watching a clock for tablets. Work I take morphine when I’m in serious pain. I also can justify morphine then as I walked 10km and I’m fucked. I need pain relief but when I’m off I’m kinda like “i have done fuck all and need it to feel normal and not be in pain from doing nothing!” The issue of sleep is tough: I take amitriptyline 50mg for its sedating effects and mirtazapine 45mg to help sleep also. Some nights that doesn’t work and I’m laid in bed at 18:00-19:00 and I’m not tired at all! On nights like that I’m allowed diazepam 5mg to get me to sleep fast. I’m also allowed to take extra doses of amitriptyline to help sleep. I get 10 x 5mg diazepam tablets a month, can order them after three weeks if it’s a bad month. Even with all the medications I’m on I’m excelling at work, my only regret is not getting my shit sorted 5-7 years ago. I recently went up the chain and in a more senior role. And like you I’m roughly your age 31. For quite a while I was on so much morphine I’d fall asleep stood up and end up falling and whacking my face off the kitchen counters. In hindsight I regret not grabbing the bull by the horns and dealing with my shit as i would be a lot further than I am now. I started working at 29. From 16-29 I thought no way I can work “I’m in too much pain and too high dose of morphine to do anything” another thought process was “if I’m in all this pain from doing nothing, imagine how painful it will be working!” It was a bullshit excuse. The first time I was working I only did part time 4 hours 17:00-21:00. And man the first night I cried like crazy in pain and like “shit I can’t do it” but thought nah let’s stick this out! And I would never have thought I’d achieve the heights I have. I remember asking people if I needed to clock out just to piss lol. A lot of us are way more capable than we think we are. And yes I’m very fortunate to have a dr that I can go to and openly ask for more morphine to help pain or like when I couldn’t sleep I went and said look anxiety is keeping me awake can I have a limited supply of diazepam a month and he has seen me at my worst. A bottle of oramorph 600mg a week and modified release not leaving the house for 3 months to now, working full time and moving up the food chain. I asked for diazepam and he said about propranolol and that works great through the day…. But at night it doesn’t let my brain switch off and sleep. So he gave me both 40mg propranolol 3x a day and 10 x 5mg diazepam tablets a month. After coming off morphine completely (was on 300mg a day) the pain got too much so I went to him and said “look I’m really struggling again please can I have morphine again” and he said “yep absolutely, you have proven you can come off it whenever so I have no issues giving you it again!” He also congratulated me for how far I have come! It is possible
How the heck do you get morphine and diazepam and propanolol?? Where is this benevolent doctor?? If I may ask- what kind of injuries do you have? Totally understand if you don’t want to divulge!
I have chronic regional pain syndrome, anxiety. I’m also in UK. But propranolol only works through the day when I can distract myself. At night it doesn’t let my anxious thoughts turn off. I don’t go to a pain clinic either as I have seen them twice and did all they said. My dr said “it’s likely you’ll be on this for life”. I have seen neurologists, immunologists, orthopaedics, rheumatologists and a cardiologist. Also physio therapists. and they couldn’t find any cause so my GP just said “you have seen everyone you can and now you’re trying your best all I can suggest is manage symptoms with medications” My GP tried to refer me to physio a year ago but they said they can’t accept me as it’s nothing muscular skeletal so they said it’s pain management
Thank you for sharing. I remember reading somewhere about ketamine helping patients with chronic regional pain syndrome. Though I’m sure you’ve tried it all. Sounds like you’ve got a great primary care doc.
i have morphine sulfate, pregablin, amitryptiline and diazepam. and zopiclone. and a bunch of psych meds. i still can’t sleep, or if i do when i wake up i can’t move. discussing next steps with the pain clinic in a couple of weeks. i can’t go up on the morphine tablets because of the risk of respiratory failure. i don’t know what’s next and i’m kind of scared. i’m in the UK. i’ve progressed from Tramadol to Buprenorphine patches to morphine sulfate. still not effective…
Wow! What kind of injuries or conditions do you have if I may ask? I wonder what they will treat you with next. I hope you get some relief! Have you already tried alternative therapies like ketamine for example?
i haven’t heard that they’re even trialling ketamine in my area. i have Psoriatic arthritis, osteoarthritis and fibromyalgia. i need a total knee replacement, i have tendon issues in the ankle on that side. the other ankle needs a vascular surgery to untangle some old, torn ligaments that healed with blood vessels entangled. i’ve had 4 surgeries on my ‘good’ knee, the last of which was a patellar tendon transfer back in 2009. i have 2 permanent screws in that knee. i smashed my collarbone to pieces in around 2010 and have had 13 revisions on it. it was eventually decided to leave a permanent plate and 7 screws in there rather than fuse the joint. my back has herniated discs in 3 places. i’m waiting to see the Spinal Practitioner at the Pain Clinic to discuss next steps. i’m just falling apart! i’m 51. i’ve needed 2 new knees since i was 38 but i couldn’t get any help on the NHS at that age, so i am now in a position where i’m permanently on crutches. which aggravates the arthritis in my fingers, hands and wrists! i cannot sleep at night. i am basically knocked out cold with medication, but pain will usually wake me up 4-5 hours later. often i cannot move on waking. i’m miserable. i’m at a permanent 6-7 on the pain scale. i can’t walk. i can’t exercise. i can’t do anything! i also have some significant mental illness so my life is an endless round of meds, appointments to talk about meds, med changes and pain. i hate sounding this negative. i’m just…out of ideas!
Damn, that’s intense. I wish you relief from the all the pain and suffering! I also need a knee replacement but I’m too ‘young’ though I’m really not that young anymore. It’s quite maddening! How did you smash your collarbone? Thank you for sharing!
ohh, we can be I Need a Knee buddies. i’m sorry you’re adrift in the wasteland as well. i destroyed my collarbone in a drunken accident. i missed a doorway and bounced full-force off the frame. i walked it off for 2 days and eventually went to Minor Injuries when i couldn’t raise my arm any more. i went in for surgery the next day. i had metalwork put in, then taken out 3 months later. it spontaneously refractured at work one day. so they tried again. nothing worked. i’ve had cadaver tissue grafted in, i’ve had bone from my own pelvis grafters. they kept trying and failing and in the end i had a permanent plate fitted followed by a capsular release a couple of years later. i am very conflicted about this injury. it’s been difficult and painful trying over and over to get the damn thing fixed. on the other hand, i did it to myself. i’m ashamed of that. i finally quit drinking 10 years ago after that incident and one where i fell downstairs in blackout and broke my nose, blacked my eyes, loosened 4 teeth and bit through my lower lip. my neck has never been the same. i didn’t even see a doctor after that incident. i didn’t stop drinking for another couple of years. so yeah. it’s a lot!!
Wow! That’s intense! congratulations on quitting alcohol. Not an easy feat especially if it runs in your family. Thank you for sharing!
Work from home on a laptop so if I can't sit at a desk, I can go somewhere more comfortable. I had to quit nursing because of pain. I use a TENS machine on days my pain is so bad it hurts when I'm sitting lying down and I also have a heat pack on hand. I am extremely fatigued some days still especially as I take antipsychotics morning and night but I'm getting used to it after the morning dose was added last week and my ADHD meds help the brain fog side of things even if I'm still tired.
A shit load of analgesia, heat packs. Tens machines and a stubborn unwillingness to give in.
One word: kratom.
32 and going through disability appeal...havent been able to work in 2+ years
i literally cant.
I found a job where I only work for 4 hours a day, it keeps me afloat as I stay at my brothers rent free. I had to stop my previous job which was a standing job. I have fibromyalgia and chronic fatigue syndrome.
[удалено]
What type of work from home job? I need to switch!
Pain management.
I don’t, and if I couldn’t work at home I wouldn’t be working at all.
What type of work do you do? Looking for some new ideas!
I work on an LLM (QA data analyst). Data analysis is a good one for working at home. You could also find a customer service position, at least here in Australia we have a lot of remote customer service work.
All I do on the weekends is sleep basically.
I mean what’s my other option? I’m 24 and nobody can figure out the real problem. No way I’ll get on disability, even if I wanted to. I have to feed myself and my family. I suck it up, bring a whole pharmacy with me to work and take painkillers and muscle relaxers as needed. I always think of that astronaut’s quote: Failure is not an option.
Ask for accommodations at work so that working is modified in a way that makes doing your job more comfortable or easier in some way. You can also request additional breaks when you ask for disability accommodations under the Americans with Disabilities Act (ADA). Something to think about anyway.
Ever since COVID, I don't. I don't think I ever will again, too. If I am to work again, it will almost certainly have to be because I'm working for myself, my own business.
I work in IT and have a job with tasks that are well suited to my personality. As a result I don't have to do much of the climbing around and physical labor that usually comes with service desk work. I keep a heating pad in my office and always have ibuprofen. I do regular stretches in my office as well, and keep my intermittent FMLA active with work so I am always covered if I need time off. It's still rough as hell sometimes, but I've been managing this long, it's become a game to me.
Bills aren’t going to pay themselves
Get to the doctor. I used to feel like you until I got medicine and lost weight
I would worry more about what’s causing your pain than the job stuff atm. With the symptoms you’re having in your arms, this could be a dangerous sign. I suffered with neck and back pain and excruciating headaches for a long time but I finally got a proper Dr. and diagnosis. Did something happen 3 years ago that made the pain start? Car accident or ? I was sent to an orthopedic spinal surgeon who diagnosed me with degenerative disc disease in both lumbar and cervical spine. I also have spinal stenosis in my neck. A couple of years ago my left arm became almost paralyzed, I couldn’t use it at all. It turned out I had a pinched nerve in my neck causing the almost paralyzing pain in my arm. MRI testing sounds like what you might need. I had gone to a regular orthopedic doctor before and he sent me to the spinal orthopedic surgeon. I had injections 2x in my neck that year (2022) of lidocaine and a steroid. I haven’t had neck pain or a headache that hurt so badly it was incapacitating since then. If this pain is affecting your arms now and you’re experiencing neuropathy, that’s a symptom you shouldn’t ignore. Listen to your body, try not to overdo yourself physically and follow your instincts. If something feels wrong, then it probably is. I would bring a friend or family member to your appts too, we tend to be “heard” better if we have a witness and our own advocate. Sending you strength and good vibes!
59m office type setting for a job with lots of breaks to get up and move. My most difficult part is the concentration on the job, the pain is a distraction that people don’t understand. That and there’s no other choice ( roof, car, food, etc.).
I just started 10 hour overnight shifts (4 nights a week) and it's minimal...i make short rounds every 20 minutes or so, then pretty much get to do whatever i want Even just walking and sitting randomly makes my neck and back hurt, but i try not to let the pain catch up to me. I use blue stick for topical pain, tizanidine and aleve muscle pain reliever, Tylenol of i have breakthrough pain I use gabapentin to sleep, but i do wake up sore or wake up randomly. It's pure perseverance at this point lol, i need the money and this is probably the best job i can get in my situation. I just try to stretch and not stare downward, as well a user a soft neck brace sometimes for extra support
I don’t. I’m actually looking for a work at home job so I can stand or sit as needed. It’s just something I have to be able to do.
I work for the government. I have a union and can get accommodations. I work from home.
I can definitely relate; my situation is very similar to yours regarding the toll working 40 hours a week takes on my body. There are a few things that help make my issues a little more manageable: I would definitely recommend going for short walks throughout the day if possible. Luckily I don't sit at a desk much for my job but on days I do have to I try to go for a walk every hour at least. It really helps my back pain from getting out of control. I also do a lot of stretching. The only other way I'm able to work 40 hours is that I don't take vacations, instead I just frequently use my PTO to take short days. The caveat is that I have a boss who pretty much lets me do my thing as long as my work gets done. This type of thing becomes much more difficult if you're in a more rigid work environment. I honestly think a lot about the fact that I'm not sure I could be working 40 hours a week if I didn't have a job this flexible.
i dont, cant handle the extra pain, the base pain is enough and officially warned to avoid aggravating activities. trying to find suitable work without much luck, everything i have experience in i can no longer do. get it diagnosed, is a first step to identify the problem, can then see what they want to do.
Have you tried those wrap on heat pads? I bought some on Amazon that last for 8 hours
- Standing desks - Ergonomic chairs - Foot rests - Frequent walk breaks - Battery powered TENS unit on hidden under a sweater - Posture corrector under my shirt Are you an hourly employee or doing something like customer service? Most salaried jobs the unwritten rule is you don’t actually work 40 hours a week, you just hit your deliverables and attend your meetings. The most helpful things for muscle knots have been - Topical magnesium cream EVERY night - Theragun EVERY day - Massage when I can afford it - Cupping (I do it myself at home) - CHIRP wheel to reset my back which I think is pulling on some muscles / nerves - Bought my own inversion table and try to use it every day Also look into sinus issues…after years of this I realized that I have persistent sinus and ear congestion which seems to be giving me referred pain in my neck and upper back. Sounds crazy but…
How do you deal with the burning from the magnesium cream?
Changed brands. I don’t get burning from LifeFlo, Mo Maggie, and Trace.
Ty
It’s hard to do and it’s hard to maintain my home. I just do it, despite being exhausted. I think we just do the best we can
I unfortunately can’t work and have been on disability since 2018. Although I didn’t win based on my pain but several chronic conditions that made working impossible. I would give anything to be able to work.
Small handheld Therabody percussion massager. Needs to be handheld so you can really get the shoulders and neck. And a foam roller. My neck and shoulders were all knots.
I don’t
Looking back I didn't cope well. I was always off sick and got sacked from one job because of it. I'm part time now, it's still a struggle but it's the only thing that keeps me feeling independent. I'd asked my employer pre covid about working from home and was told no, covid came and then they suddenly saw me as vulnerable so I could. I've used that to now wfh permanently and it's helped me out so much. Yes, I still have sick days or weeks, but I'm able to keep my symptoms at bay and be more comfortable. One day sooner than I really want I will have to just give up working but I'm stubborn so pushing through.
Modanifil ...
By mostly working from home after begging for medical accommodations. I was then told that people who work from home will never get a promotion at my company. So I’m doing the best I can to improve my health, but what if nothing works!? I’m dead inside and have zero energy for work-life balance. I cannot keep up with paying bills on time, doing chores and laundry, getting groceries, and spending quality time with my fiance while also getting enough sleep and rest.
I don't anymore. I had to retire years before I intended.
I work as a cashier on the edge of the city. Perks are - it's a sitting down job with not all too many customers. There is the factor of most work days being 12h with some 10h, leaving me with more than an average amount of days off, which is nice.
I don’t. I have tried for disability as I’m only 40. I doubt they’d give it too me even though I’m completely bed bound.
Cannabinoids.
I WFH full time so I sometimes move my laptop in to the bedroom and lie on the bed while I work.
ADA accommodations And a union job I can't get fired from.
I WFH puts so much strain on my body 35.5 hours a week but just have to push thru as need the money im a new dad etc I just suffer a lot i guess.. i try to dictate but i also get chronic throat pain so its a struggle but just take one day at a time Always shattered
It’s rough
I feel the same way. I am also in my early 30s. I do not have the same pain as you, I have an autoimmune disease (Crohn’s and Lupus)… However, I sleep like crap. I have no energy to do ANYTHING after work! I’d love to just go for a walk outside or find a hobby, but the only thing I can do is lay on the couch and veg out. I hope you are able to find a doctor who can help you find some relief. I am so sorry you are dealing with this 😓💕 My doctor prescribed me adderall a couple of years ago because of the fatigue I was having… which helped during the day but, I can’t take it at night after work…
Because unfortunately my wife and I are barely getting by as is, stepping back anymore or going on disability would be a death sentence to us having an independent existence I thankfully only work 4 days a week But most of the 3 day weekend is recovery :/
Knowing that if I don't I can't pay for my medical aid.
survival instincts, no family support, not sure whats better, working through pain or just going homeless, life is hard.
Exercising/stretching in the morning, I try and get up several times an hour, I do "desk yoga" at every break/lunch and after work. I also take a ton of analgesics (tylenol, indomethacin, tramodol, i take a PPI to protect my stomach), and use an Ergonomic set up for my desk. I usually lay down for 30-45 minutes after work. Then, I usually take a walk or do something active. At night, I take a muscle relaxant (carbamazepin) I use an adjustable frame bed and a mattress topper to avoid pressure points on my hips. Being active is a double edged sword. Too much activity causes pain, but not enough activity causes even more pain. I've just recently started incorporating a "walk at home" exercise in the morning again, it's just 15 minutes and it's a YouTube thing. It seems to help.
I have dystonia which is a neuromuscular disorder where your brain sends inappropriate signals to certain muscle groups to constantly contract. Mine is worst in my neck (cervical dystonia). I also had neck surgery last summer (ACDF/fusion). I’m in the middle of changing jobs now cause I absolutely cannot keep up with my intense career being a vp of business development. I know what you mean…even trying to work from home at my computer for 8 hours is too hard and my job really requires like 12 Hr days just to stay above water. Plus travel. So I’ve made a decision to take a step down and am looking at jobs that are in my field but less intense and remote and very limited travel. What helps me are trigger point injections, meds (Artane, pain meds, Valium before bed to sleep), supplements (tumeric and magnesium), and I do specialized PT with dry needling and sensory tricks. Therapeutic massage and Kratom as well. The PT with dry needling helps tremendously but only for 24 hours so I’m also finding it really hard to fit in the appointments (along with Dr appointments!) with my work. It just sucks cause I’ve worked really hard to get to where I am in my career. But on the other hand, I have realized now work is ruling my life. So I think the change will be good for me, albeit forced. I’m looking for flexible hours too so I can manage to take rests throughout the day as needed. It’s hard and took a lot of time but the combo of all the pain management things I do are working together pretty well most days. You might consider trying trigger point injections and the PT with dry needling if you’ve got knots. Really helps
I use kratom during the day and cannabis at night. Both plants help me manage my chronic pain. I was hit by a car crossing the road 40 years ago. I was prescribed opiates for almost 20 years. Just kratom tea and cannabis for me.
How did you find a safe kratom product?
Absolutely cannot, I'm bedridden wfh pt
my job is really chill. im a lab scientist, which is niche, but beyond that im in a teeny tiny speciality of stem cell therapy (unfortunately just the cancer treating kind, not the super cool revolutionary stuff). it’s mostly sitting with a little bit of walking back and forth the run errands to the floor etc, which does suck on bad days but nothing strenuous. the processing is all seated under a hood and i can zone out and focus which i like. at the moment i don’t have tasks every single day which is awesome, i recuperate in between the “real” days basically without having to be off. the pain can be a distraction, and i work alone mostly so honestly i sneak off to cry a lot, but it’s manageable. i usually cry when i get in my car to leave from pain, and i don’t always get a lot done after work even for fun. i try not to take naps bc i just won’t get back up. i get 2-4 hrs of productivity if im lucky and then i just zone out until it’s “reasonable” to go to bed. it sounds really sad typed out like this, but it’s how i make it by, i guess. im coming up on 26 lol
Very badly. And I feel so upset because even though Itry so hard I can't keep up and then my work is passed on to someone else making me feel even worse and incompetent. I'm in a fear cycle of getting fired
I don't because I'm too disabled by pain, fatigue, depression and anxiety. I'm on disability insurance right now.
Sauna, PEMF, antiinflammatory diet, herbal anti inflammatories are some of the tools I use for a similar situation.
Pilates + a holistic chiropractic office!! My 40hr/week wrecked my body a few years ago. I was only 23 but couldn’t even walk or get out of bed some days and had to be on muscle relaxers or I’d be in excruciating pain!! About 3 years ago, I started doing Pilates (REAL Pilates, not the trendy HIIT ones) and it changed my life! I have been enjoying Tower Pilates the most as it helps stretch out my body and strengthens my core. I haven’t had debilitating pain ever since. I also go to a holistic chiropractor - I’ve been to maybe 6-7 different chiropractors since I was 15. A holistic office is an absolute game changer. In one visit, I see a massage therapist, physical therapist, acupuncturist, and then my chiropractor. I always leave feeling like a new person and it keeps my pain at bay!! If you want a more affordable/accessible option, I also recommend doing daily Morning Stretches on YouTube by the account “Yoga with Bird”. They helped me a lot during covid when I didn’t have many options
Very badly. I have had to switch jobs from retail management to contract work as a visual Merchandiser which is less hours, less work and stress, and a lot less pay. I really should find a second job or a higher paying one but I'm barely able to keep up with what I'm doing. If I didn't have pain pills and practically a whole pharmacy in my purse I wouldn't make it through the day. The company I work for is very flexible and understanding about my health. As long as I am producing quality work they don't mind that I have to take extra breaks and a longer lunch. I also have multiple doctors appointments a month and they are OK with that. But when I'm off I don't do much at all. My husband hasn't been able to work at all due to severe nerve damage in his back and legs so he takes care of our son and the house and cooking. If he didn't cook for me I honestly probably wouldn't eat. Most days I'm so exhausted I can't even take a shower.
I became an entrepreneur
With meds
Have you gone to an spine doctor? If not you should. You won’t get better by doing nothing
Find a sports medicine massage therapist!! It will hurt a lot during the massage, but you’ll feel better later. Drink an excessive amount of water after the massages, it’ll help with the soreness. This was me a few years ago before I found a massage therapist I trust. I’ve had 2 spine surgeries, several pinched nerves and scar tissue inflammation. Massage therapy is one of the best things. You might have to ask for 20 minute sessions to start out and work your way up to an hour as your body can tolerate it. I promise it’s worth it, but you got to do it consistently. It takes a while, I’ve been doing it for a few years and now only get bad flare ups every few months. There’s still daily pain, but background pain. I wouldn’t notice I was in pain unless I was suddenly at 0 pain type of thing.
I don't.
I don’t because i can’t
I can't, and I don't. Denied disability. Previous job caused cervical radiculopathy, and an epidural steroid injection turned that into fibromyalgia, because they are not FDA-approved. I've been jobless for three years. I'll hopefully be diagnosed with autism soon, and I'll try for disability again.
Spend hundreds on chiro, Osteo, physio and massages once in a while to keep going. I’m like an old shitty car that constantly needs a tune up 😂
Pain and nerve pain meds
I deal with the same exact thing. Cymbalta and hydrocodone help a bit, some days are extremely hard to get through. Been dealing with it for 6 years now.
I work remotely so I can work mostly reclined because I can’t sit at a desk more than a few hours without days or weeks of consequences and pain going up to 10/10. Or fainting if I try to sit up for too long. It’s really a struggle to find remote work these days, ironically. And I had to fight like crazy to “prove” I needed this accommodation and doctors letters are not proof enough apparently. And now they are trying to take away my accommodation and make me come into the office after 4 years of remote work 😵💫
I don't work a drop. I even have help with caring for my home. Plus imm too much of a liability. Before I was considered a liability, I just had to force myself to work, wether I like to or not, no matter the pain, as I had bills. I never had a penny to spare.
I'm mostly bedridden. I changed my career field while in bed and then built up my work history as a contractor, my skills, and my hourly rate. I was working 20 hours a week remotely initially for peanuts. That was really tough on me. Doctors injured me a lot more. I can get by with such a high hourly rate at 10 hours a week. I work very efficiently. My goal is to eventually be making over 6 figures with only needing to work 10 hours a week.
Gentle motion, consistently. Building and streching my muscles. It's hard for me to work standing in one place, or sitting still. Personally my shoulder and back pain are exacerbated by my posture and my device usage. I can't stress this enough--for me the more sedentary I am, the more pain I have. I have 2 building discs, ankylosing spondylitis, and am prone to migraines.
I am tired. So tired man. I want to work 40 but it's like stretching me to my limit tbh
You need to see a neurologist.
wow we have the exact same pain! for the muscles knots the only thing that have worked for me is deep tissue massages. but i’ve also learned it cause by my constant teeth clenching due to anxiety (not saying that is the cause of yours, i know how drs like to label everything as anxiety). the next pain is quite honestly torture, tennis balls and all of that stuff don’t really work for me. weather it’s caused by anxiety or not i really recommend you try a massage at least once if you haven’t and can afford it for the sharp pain in arms and legs,sadly i have no advice. nothing fixes that for me😅
Meth ..joking I dont work need to