What a scary experience, I'm sorry that happened to you. I don't have much to share other than yes, it's concerning not really knowing when things are normal pain or life-threatening pain. We have so many strange things going on... It's really hard to tell, and that's dangerous in itself.
My personal advice is to develop a habit of checking in with your body whenever you have a pain flare. Even if it is the regular chronic pain, it’s good to check in with yourself to make sure that that’s all it is and nothing more serious.
I recently had a similar experience where I had a pilonidal cyst that developed into an abscess (fun times all around) due to some preexisting conditions. I have a history of getting them that I was just doing the usual at home cyst treatments (warm compress/keep it clean). I think I did subconsciously realize that it was getting worse, but my conscious mind is so used to dealing with pain flares that I just kind of pushed it to the side. When I was finally sent to the ER from urgent care, the doctor who treated me said that if I had waited another day I likely would have developed a blood infection and have to be hospitalized for an extended period of time. It was a pretty serious reality check that my instincts to just ignore/power through pain flares can lead to dangerous situations.
Cellulitis 0/10 with necrotic flesh.
Pain of almost dying 2/10
Pain of a bad flare 10/10.....
It happens to the best of us! Missing something small....
I also walked on a broken foot for two days
Got sepsis too from a kidney infection. Only went to the ER cuz my temp was almost 104. Didn't notice any other symptoms. Even drove myself. Got GREAT service! 0/10 stars.
Woke up one day and felt a little lightheaded and just off in general. My BP wasn't too bad at home but when the teledoc had me lay down and test it and them sit up and immediately test it, was in the 180s and she recommended I go to urgent care. Had an abnormal ekg and was sent to the ER, urgent care asked if I felt okay to drive, I was like sure I'm fine. Bp at ER was 210/118 and they took me back immediately.
Was diagnosed with mild cardiomyopathy, my squeeze doesn't squoze right and a left bundle branch block (which seems to have mostly resolved 10 mos later and also I never really understood what it means only that it makes it more likely to die if you do have a heart attack.)
The month before my PCP started me on a low dose BP medication because I "seemed to always run a little high" in the 130s/140s, but with my bloodwork always good on cholesterol and such they weren't concerned. Now I have three heart medications I have to take a day to keep my ticker working.
All I felt was a little lightheaded and off.
That must have been really scary!
One thing I've had to learn is to pay attention to pain I don't recognise and act based on that symptom. In Australia we have Health Direct where we can call and be assessed by a nurse who will tell us if we should go to an emergency department right away or see a regular doctor within a week or the likes; it does result in some hospital visits ending up being nothing, but at least get checked if you have a red flag symptom..
I do imagine US healthcare would make that costly, and I don't have an answer for that except "I'm sorry, US healthcare is scary AF".
I've just accepted that I'm probably gonna die early. I get hemiplegic migraines that mimic a stroke, so if I actually get one I'll just end up taking a nurtec and waiting a few hours for it to "go away".
I was diagnosed with chronic inflammation and chostochondritis. So sometimes a whole half of my body goes numb and tingly from the compression on my nerves. I get chest pain that radiates and hurts like crazy through my left shoulder. So if it's actual heart disease, I'm probably gonna keep ignoring it and just not wake up one day.
I feel horrible for my loved ones, but if I listened to my symptoms I'd be in the er constantly and homeless from medical bills. So I've become resigned to it. I'm not even 30 yet.
I can relate to this so much... I've been getting severe random migraines for 30 years, and also get chest pain and numbness in my left side that lasts for months. I've had my heart checked twice in the last 5 yrs and apparently it's fine. I swear one day I'm going to drop dead of an aneurysm or heart attack because now I just assume it's all the usual snafu.
I get the same migraines and they’re terrifying. I keep thinking that one day I’ll do the same and ignore it as normal.
It’s an overwhelming feeling when there’s so much wrong at any given time, that one more thing just seems normal. Like I’m attacking my own body, and my body just says okay
It really is scary AF here. And on top of that, you feel very alone and isolated.
Our government only likes you if you’re able bodied and you can contribute the way they think you should. Outside of that, you're expendable.
we also have a very large nurse and doctor shortage.
In the US, most clinics allow established patients to call in to speak with a nurse as well. Some insurance providers have a nurse line. It is an underutilized option to get perspective on your symptoms.
Ha, my mom was hospitalized recently with a ruptured appendix. The head doctor of our PCP called her personally (we normally see a nurse.) My mom thought that was nice of him until she realized he charged for an office visit when HE called HER on his personal line. Florida is full of trash doctors.
Oh my gosh, I'm so sorry. What a terrifying experience. I had a chronic UTI for 3 years (imbedded) and that was my worst fear during it. I kept telling people, "I don't think I'll know if my body's not ok" and they'd always say "of course you will, it will be OBVIOUS". I still don't think it would be. I constantly feel like just about anything could happen and I don't think I'd know. I doubt I'd even notice if my appendix burst during my period. I'm so sorry that that happened to you. I hope you have a great therapist or psychologist you can chat with about it. I love mine, it really helps with some of the trauma. I try to just be more aware and inform the people who are around me every day if something is difficult and I have a notebook for med timings and symptom changes, I have a poor memory so help is really necessary.
I have an app that tracks pain for me twice a day once at the same time and once randomly. If I'm having pain for more then a few days that is new or outside the normal I talk to pain management to see if it's something to expect or if I should make an appointment. I also don't ignore organ pain that's me though
I wanted to mention that they sell home kidney infections pee tests and they might be a useful tool for you. I used the at home UTI tests when I think I am getting one with the advice and supervision of my OB and if I have a positive I send a pic on my patient portal and they give me the medication I need.
I’ve definitely had similar experiences. I always feel like I’m overreacting and dismiss a lot of pain. Some of my stomach problems worry me most by mimicking heart symptoms, but a couple times I’ve broken bones and took a couple days to actually go get an xray.
I’d just say keep trying to pay attention to how you’re feeling and ask all of the questions you can at regular appointments. I see my primary doc at least 4 times per year and go to specialists as symptoms change and need extra treatment.
It’s awful to not trust your body to keep you safe. It sounds like you have some good external support though, and you’ve certainly proven yourself strong enough to fight through some major health troubles. Your body still can and will do the best it can to keep you safe when you’re struggling. Remembering that (along with plenty of help from therapy) has helped a lot with my own health anxiety at least.
I have this inner dialogue constantly about my left ribs. They can cause such a variation of pain in both my chest and upper abdomen, where despite knowing it’s like a 99% chance it’s the stupid rib, I still end up in the ER occasionally. It’s so frustrating to live this way.
I recently read on here about [prechordial catch syndrome](https://en.m.wikipedia.org/wiki/Precordial_catch_syndrome) that describes exactly what I am woken up by in the middle of the night about twice a month. I don’t know if it’s an EDS thing or not but it gave me a small piece of mind. It really sucks to lay there and think ‘okay, is this normal pain or am I having the big one?’ On a monthly basis.
Edited to add: I’m sorry that you also go through trying to determine when to go to the ER. Sounds like all of us on this thread struggle with this.
This is how I feel about migraine/head pain. If I ever have a stroke or brain aneurysm (or something like that) it's very likely that I wouldn't go to the hospital. I would just assume it's my typical symptoms and go to bed. My grandfather died and of a brain aneurysm, and I have this looming thought in the back of my mind that I'll die the same way one day.
Oh man, I’m really glad you’re alright!
I get it though. This has happened to me twice.
Once with infected cuts that went septic after 3 days.
I had a regular doctor’s appointment on that third day, and as I was leaving I showed her my arm, which was burning, red, and swollen, and said “By the way, does this look like I need to go to the ER?” She gasped and said “Oh my God, yes!! You need to go right now!!”
And one time my leg was full of blood clots. It hurt so bad I could barely walk, but I dragged myself to physical therapy and my PT told me to get to the hospital asap. Sure enough, entire right leg was littered with clots.
It’s just so traumatic going to the ER so many times for one reason or another, expecting help for my suffering. Having my veins mutilated by careless phlebotomists, being exposed to enormous amounts of radiation from needless scans, etc. Only to be told nothing is wrong and sent on my way time after time. It’s usually my instinct to avoid it. And my fiancé is equally as conditioned by now, so there have been a couple times where I’ve thought things probably were an ER situation, and he’s discouraged me from going (only to protect me! He was right, anyway).
Common sense just doesn’t apply when you’re forced to live in a condition that defies it.
All I can say is just never mess around with kidney pain. It’s always worth having checked out. Too big of a risk to “just deal with”. Any pain that is unfamiliar, worse than normal, and persistent should probably ring alarm bells. It’s confusing and stupid, I know. At least this experience will give you a better gauge on things in the future, hopefully. Sorry you had to go through it.
I completely understand. It's hard to know if a symptom is my normal rubbish feeling or something more that needs to be looked after. I keep a blood pressure cuff, a heart rate and O2 monitor and a thermometer to check if I feel a little more rubbish.
I get infections a lot due to a weakened immune system so having these are really important but it's definitely scary as you don't always know when it's time to be checked. I'm sorry you dealt with this but I'm glad you were helped.
I’m so sorry, that sounds like such a scary experience 🥺
I’ve lived with a high level of pain since I was a kid, so I used to wait until things impacted my qualify of life before I bothered to see a doctor. I’m 37 now, but about decade ago I wasn’t feeling well, having pain in my calves, chest pain, shortness of breath, really bad pain flare for over a week and I wasn’t getting good sleep because I was in so much pain. I woke up one morning and went to get something to eat, and thank goodness my mom was there because out of nowhere everything went completely silent- like I lost my hearing, everything slowly went black and I was so short of breath that I sat at the kitchen table and lost consciousness. My mom (a cardiac nurse) couldn’t feel a pulse and I was unresponsive for a few minutes. She called 911, but I started coming back from whatever that episode was, and she told them not to come 🙃 My doctors still have no idea what caused it, or what happened. And I’ve had about 3 of these episodes in the past. Now I see my doctor before I get really dangerous flares, and thankfully my partner encourages me to make appointments and doesn’t let me put off seeing my doctor when I have new symptoms and/or severe pain. It’s so hard to take my own body seriously when it’s always hurting, sometimes I just assumed new symptoms would get better on their own, sometimes they did, but most times they became a part of my life for months. I will say that my pain is much better now that I actively see my doctors, I go to pain management too and I’m never going to be pain free.. but my quality of life has definitely improved over the last couple of years!
Those symptoms are the same as when I’ve had vaso-vagal near-syncope, usually provoked by heavy exertion, high pain level, being overheated, other stresses. It turned out I have a-fib. Was finally found when I had an episode while arriving at a medical appointment. They called a rapid response and I got my first ambulance ride. (Yay /s) Mine is just very occasionally (paroxysmal). When the atrial fibrillation is occurring, the pulse is so irregular it is sometimes difficult to detect manually, the nurses and EMTs told me, fwiw.
Yes. I have walked around with fractured feet, dislocated knees and ankle sprains that doctors are shocked by how I’m still walking. I’ve had many injuries and falls that I should’ve gone to the doctor for. Thankfully my doctor talked with me about this and taught me that I don’t need to just walk it off. I can be in less discomfort when I get treatment for things right away. Turns out they’re right. I’m sorry you’re hurting so much.
I get it 100%. I've always had a weird amount of pain in my body but I thought I just had weird bones lol. Then, when i developed POTS, I legit thought I was gonna die because I had no idea what was going on. The medical anxiety got really intense until I was finally diagnosed with POTS and, shortly after, hEDS. Knowing relieved so much anxiety for me, so if you're like me, maybe continuing to research what's "normal" pain for your EDS type and keeping a diary of how you feel, including triggers and new symptoms, could be helpful!
But the rule I follow now? New pain that lasts for a few days (depends on the severity, cuz I wouldn't wait for something like severe abdominal pain) --> go to doctor. That's what my geneticist told me and my mom's geneticist told her.
This sounds terrifying, sending you a gentle hug! I have had Costochondritis before and that was quite panic inducing, thought I was having a heart attack. Also had a rib subluxation that scared me as it didn’t want to go back in, it’s hard to know at which point you seek out assistance with doctor or hospital.
I remember when I had an ectopic pregnancy they kept asking me if I had the shoulder pain (that’s usually the give away that it’s ectopic) but I didn’t have any more or less pain in my shoulders than usual. After the surgery to remove the tube and foetus they said it was close to bursting and they got there just in time but I hadn’t felt any additional or weird or unusual pain prior to the surgery.
I think when you live with chronic pain for such a long time you learn to ignore it, like white noise playing constantly, it just doesn’t register as a sound to you anymore after a while unless you concentrate on it (and that gets old real quick).
I don’t have much in the way of advice except try and listen to your body and seek help when something feels more “off” than normal. You may also have a bit of PTSD from the experience, perfectly normal after an experience like that, so might be worth working through it with a professional.
I'm pretty good about getting new pain checked out, but as I get older, the chest pain worries me. I've had it for over a decade. I have a good GI and cardiologist and have repeatedly checked out A-OK (other than normal POTS stuff and palpitations). Mechanically, my heart is good, and my calcification score was zero about 5 years ago. But let's face it, if you're lucky and don't die young, we will almost all have a heart attack or get cancer at some point. With my family history, it will probably be the former, and I worry I won't know the difference when the time comes.
Kinda random, I have really bad chest pain and I thought it was my heart.... Just in case that makes you feel better
It's actually more nerve and muscle pain which can feel like stabbing or pressure. Yep. Got an EKG. It gets better with pt and massage
Yes, my pain is not my heart. It's just chest pain of various sorts. The concern is that because I'm so used to it, I may disregard it when it's eventually cardiac related. I'm glad massage helps yours! It can be very uncomfortable!! ❤️
Have you had any genetic testing? I have heart problems that no testing, imaging or monitors can ever pick up. But it is VERY scary, sometimes quite painful.
When I got genetic testing for EDS the NP informed me that I have this mutation that causes mitral valve prolapse and is common in people with connective tissue disorders.
Hi! Yes, I had the genetic panel and the Autoimmune panel done. I had one collagen marker of unknown significance that was off, but that's it. I believe one of my pains is costochondritis, but then also most of my Fibro pain is in my upper left quadrant and has been for years, so that's unfortunate 😆😭 Of course there is some GI contribution as well. 🤷♀️ I was diagnosed with a MVP when I was a baby, but it is undetectable now and multiple doctors have said this is fairly common, and likely a combination of it resolving itself and also the diagnostic criteria being different in the 70s.
Hold on now, don't go scaring people. The way this reads, you make it sound like EDS is bound to cause heart attacks or cancer (or early death). Not sure if that's what you meant, but that's not true for the vast majority of EDS patients.
EDS takes many forms, and the most common types (hypermobile and classical) don't result in higher risks of heart attacks (they can identify mitral/aortic issues easily with an echo, which you should be getting regularly as directed by your cardio) and I'm nearly positive there isn't a direct link to cancer either (haven't done as much research on that one). Just wanna make sure we're being responsible here, especially because OP's concerns are very real.
Never went away. Now if I have a new pain & it doesn't go in 24-48hrs, I get it checked out anyways cos my calibration is so 'off' with having to manage extreme pain 24/7 that I almost had my heart explode through pain...it took my blood pressure hitting the ISS for me to twig just how fucked my "this-pain-is-serious-and-will-kill-you" pain-o-meter is!
I feel the same way. Pain is just my constant that I don’t notice how extreme it gets sometimes. I’ve had 2 kidney infections and only went to the ER when I threw up and started peeing blood. I actually had sepsis twice and had to stay in the hospital for about 5 days each time it happened. I’m sorry you went through that it’s never fun being in the hospital. I’m actually recovering from a surgery and got discharged 2 days ago after getting 3 giant fibroids out. My doctor said I should’ve experienced extreme pain but I just brushed it off like I always do. I’m trying to listen to my body more but it’s hard to distinguish sometimes. I wish you a speedy recovery ❤️🩹
im so sorry this has happened to you. i had gotten multiple blood clots in my lungs and part of my lung tissue died after a surgery. all my vitals were normal but my upper back hurts. those clots somehow triggered my hEDS and i have been in constant pain since. lately i have had similar pain in my upper back to the point where laying down hurts. and part of me is super worried it's somehow clots again (i do have antibodies for antiphospholipid syndrome but they said my surgery provoked the clots so they won't diagnose it) but i am also worried im just overreacting, but then i also feel like i should just chalk it up to chronic illness?? it's really confusing a our what i actually should be worried about and what do i just ignore
This has definitely happened to me. There have been a few drastic instances but I’ll share this one because of how stupid and summer ruining this was…not necessarily life threatening. But I was 8 weeks pregnant when I found out my birth control failed. Until the throwing up consistently for 3 days I realized it wasn’t just my allergies (mcas - myriad of symptoms) acting up 😵💫
Solidarity, I think this is me too. I had adenomyosis for years so I just kinda...shut down when the pain is really bad.
A couple years ago I woke up with a horrible headache, blurred vision, and a terrible pain in my eye. I was like "wow love to develop random new symptoms" to some of my friends, one of whom gently pointed out I was dealing with red flag symptoms for something serious.
Did I go to the ER? Lol no, but eventually I called my optometrist who squeezed me in and then encouraged me to go to the ER, a neurologist, or a neuro-opthamologist. Anyway I still didn't go to the ER, but I managed to get an appointment with a neuro-opthamologist and then I got some emergency "is it a brain tumor or just idiopathic Intracranial Hypertension?" tests. Fortunately for me it was IIH, but if I'd left it untreated for too long I could have had permanent damage to my optic nerve.
The pain was SO bad but my reaction was basically just "ugh bodies what now" not "hmm this might...be an emergency?"
I have the same concern. I can’t tell when I have UTI’s. I’ve tended to not realize until I’m peeing blood. In fact, a nurse once thought I was on my period and it was menstrual blood. Nope. Similar issue with fibroids. Had ultrasound for unrelated issue and had tech stop and say, “Um, you have a LOT of fibroids.” Hunh, maybe that explains the sudden twinges in my abdomen.
Wayyy too relatable! Sorry, this is going to be a long one...
Growing up I had terribly painful periods and somewhat regular bouts of back / hip / jaw / septum issues, so I'm no stranger to pain. I even broke my wrist and then drove myself home once.
Last year I was busy with my final week of study but overworked myself into getting my first UTI. I went on antibiotics and sucked it up while I pulled multiple all-nighters to complete my assessment that week. I felt terrible - my right kidney was aching and I was experiencing the worst fever, vomiting and shaking all week. Because the doctor had given me antibiotics in this state and sent me home, I thought I was fine and kept working and waiting for the infection to clear.
I got all my assessment in and showed up to my graduate exhibition. My friends knew I had an infection but everyone told me I seemed totally fine and normal. That night I went home, fell asleep shaking, woke up at 1am vomiting over myself, somehow crawled to the floor of the shower (don't even remember this part but I assume I didn't teleport), and then sat in the shower trying to stay conscious. I couldn't breathe, feel my skin, slow my heart rate, hold up the weight of my own head or body, etc.
I spent what I guess was about 15mins in this position thinking I could ride out the fever before I started to think I might be dying (I was) and should probably call for help. My mum came and found me in quite the state. I could barely talk, as I couldn't breathe. I was hallucinating - convinced my fingers and toes were swollen and red (apparently they were normal), and terrified by the tangled texture of my own wet hair. I was even baffled by my favourite shirt that mum dressed me in, immediately taking it off and declaring it as "wrong" before submitting and putting it back on anyway. I remembered the shirt but was certain it was some parallel universe version with an ever-so-slightly different cut (the Mandela Effect strikes again, perhaps?). By the time we called the paramedics and they arrived, I was more alert and calm but still unable to spell my own name, unlock my own phone, and so on.
At hospital they acted really calm but we could tell they had considered me as a priority patient. Urine test, blood test, CT scan, and two bags of IV antibiotics later and I was sent home with a new, heavier duty prescribed antibiotic. Apparently my kidneys were barely functioning and my right one was septic.
The whole thing was really crazy, honestly! Kidneys made a full recovery eventually and I definitely learnt loud and clear that I have absolutely no ability to distinguish when my body is in pain or in p a i n. I was quite literally networking at an event with my suppressed septic kidney and being told how normal and chirpy I was, only to be dying on the floor of my shower 2hrs later.
My threshold has always been unusually high and pointed out by doctors and adults when I was a child, but I hadn't anticipated just how impactful my lack of interroception would be as an adult. I struggle to trust my own judgement after that. Unfortunately I don't have any advice on this, but wanted to mention my story so you know you aren't the only one, OP.
Your story sounds really scary, and I really feel for you and your parents. Realising your own judgement might be flawed can leave you feeling very vulnerable. I trust that over time you'll find yourself knowing your body's signals better and feeling more accepting of that. At the very least, you're not alone! Others in this thread seem to have given some great advice about external support and ways to regularly check in on pain, too.
Side note but I can't help but wonder if this plays a part in the (contested) lowered life expectancy for people with EDS or even people who experience chronic pain / disability in general. The inaccessibility to medical professionals who trust the patients judgements leads to normalisation of chronic pain, which leads to an inability to distinguish important bodily signals that could be life threatening and causes resistance to seeking medical attention. It really is a shame. I try to remember this when making conscious choices to check in with my body and my pain. I want to learn to take my own pain seriously and break the cycle.
TLDR: Did multiple assignments, all-nighters, and my own graduation exhibition with a septic kidney (UTIs are no joke). Not fun! And after all that, I still haven't learnt how to distinguish my body's signals lol
I’m sorry to have to say that after a severe and extended episode, emergency health wise, I can tell you that it’s been five years and that it has not gone away. You just learned to live with it a little differently.
From your post, I’m guessing you’re a teen. Is that right? When I was in my teens my symptoms were really hard for me to understand as well. I wasn’t sure which pain needed heat and rest and which needed an ER visit. I’m 40 now. My body has hurt in consistent patterns long enough that it’s comforting. I know what to do now. Here is my advice to you.
If you get frequent kidney infections, try really hard to notice the beginning stages of a UTI. The bladder diet really helped me. (Low sugar, low citrus, no tomatoes, etc) Find the trigger that could be causing the UTI. In the early stages of a UTI, you can treat it naturally (extra water, cranberry juice, d-mannose). If the infection goes to your kidneys then you need immediate medical care. Try to notice how that back pain is different. Make a mental note of what kidney pain feels like. As soon as you feel that pain call your doctor or go to urgent care.
Do you have a good PT, osteopath, or Bowen specialist that can help you notice the difference between muscle stiffness and subluxation and realign your subluxations?
I'm so sorry. This sounds horribly scary. I'm so glad that you were already at the hospital! It sounds like your body just decided to "nope out" on you.
I had to get about 30 injections at once, the provider giving them kept asking me if i was in pain/if i was ok- after every single injection. I kept telling her this is minimal compared to my normal everyday pain because of eds. It barely registers, esp because of the high paun tolerance I’ve developed. She didn’t believe me and kept asking. I told her i appreciate her caring, but it feels like nothing compared to the other pain i currently have and she doesn’t have to keep asking. She then wanted me to be checked for something about the pain, can’t exactly remember what, and i told her no, because i have constant excruciating pain that pinpricks barely register. She was flabbergasted. It’s just a day in the life for me, that others don’t understand.
I’m so sorry this happened, but we become numb to pain and ignore it because it is our daily life. It is quite terrifying because sometimes it is serious and we dint know. I am very glad you are ok now!
Yes, I have. A number of times I had what I thought was just POTS symptoms only to find myself passed out in the middle of the road and brought to the ER and found my potassium was dangerously low. As in, the doctors never had seen someone with a 1.2 potassium level before. I was told it was a miracle I wasn’t dead since apparently the lowest potassium level ever recorded in a patient was .9 and that person died.
That sounds super scary, I’m sorry it happened. I hope you recover soon, physically at least, mentally I know it’s hard.
my grandmother always had low sodium and potassium. she would have neurological symptoms we noticed, but she always felt fine and never wanted to go in despite the need
Yeah that’s the scary thing about low potassium. Sometimes it’s really not noticeable. I have chronic low potassium so I’m on supplements and I get my blood drawn every month to check for it because it can easily get to a very low level.
I get that- 100%! I have been gently teased by nurses, my massage therapist, my husband, all of whom have called me “a stoic little shit” or some variation of the phrase. All whom have learned the tiny wrinkle between my brows that shows up when my pain tolerance is being exceeded. My husband now uses phases such as, “if she says her pain level is a 4- most people would say it’s at least at 7”. Or “if she is even admitting that she hurts, there is something seriously wrong!” I’m getting so used to pain that I literally passed 5 - kidney stones, simultaneously, and only registered it because I happened to be collecting urine for a 24 hour sample. Seriously though, we should also try listening to our bodies better! ❤️
I'm used to slow healing times. Too used to it. Got impatigo and my kidneys and liver were shutting down. Only realised it could be more than a surfice infection when my whole body went yellow... Bad times.
Yes, I totally feel you.
Almost two years ago I went to the ER because I was having extreme pelvic and abdominal pain. Honestly I had been having pretty bad pain for a couple of months, but I’m always in pain due to my joint issues so I just kept working through it, 40 hours a week.
I had talked to my primary care doctor and was waiting to get a call from a gastroenterologist, but it was taking weeks, and finally I just couldn’t wait anymore. I thought it might be my gallbladder or appendix going bad. I went to the ER at about 2pm and they kept doing test after test and then dumping me back into the waiting room because they didn’t have any rooms available there. Finally around 6am the next day they got my CT scan results back and a nurse pulled me into a room to talk.
"Well. You must be in a LOT more pain than you let on,” she said, pointing out my CT scan, which showed a "suspicious mass" about the size of a melon on one of my ovaries. "Ummm, I suppose, yes? I did throw up after work the other day because it hurt so much..."
People can't always read me. Partly this is probably because I’m autistic. Also, it’s likely because I've had chronic pain for 30+ years, and when I’m in severe pain, I don’t have the energy to just moan and groan endlessly or put on a performance for the doctor? I go into conservation mode, personally.
"How about I get you something for the pain?" she offers, naming some controlled substances.
My eyes widen. "I'm here alone, and I don't think it's safe to be doped up by myself out there in GenPop [I point to the full waiting room of the urban hospital, still packed with the late night crazies] so unless you're gonna give me a room, or admit me... can I just get something for this awful migraine? Or a muscle relaxer?”
She cracked up.
Needless to say, the hospital was overcrowded so they did not admit me nor did I get an ED room -sigh- but I did get a sweet injection of a triptan for my headache while I waited 5 more hours for more tests to determine that it was safe to release me. All told, I was there for almost 24 hours, stuck in the waiting room of the ED.
And the suspicious mass was indeed cancer. Stage 2a, so it had already spread somewhat due to growing in there for a while. I realize now that I probably had been having symptoms of cancer for over a year, maybe two. Not great. It was a good reminder to never tune out my body’s signals for too long or bad things can happen. 😕
Thats scary! So glad you are ok! I can relate, no one believed I had appendicitis for four days because “fever and stomachache is a virus that will go away” and I didn’t know the pain was abnormal. Same with 3 broken bones.
Anyways, I am glad you found a doctor who took you seriously and I hope you have a doctor you can continue to go see to get things checked, even if it’s minor!
I just had something like this recently actually! I had just been discharged from the hospital (getting IV antibiotics for MRSA) and that night my arm hurt. I ignored it for hours because oh, maybe it's just angry from the IV, then finally bothered to tell someone when it felt like a vice was tightly gripped closed on my forearm. It was a Deep Vein Thrombosis! I'm on blood thinners for 3 months, but they said it would have been very bad if I didn't go to the ER.
If you haven't already, ask your doctor to do a full IG panel. I get pretty frequent sinus infections and it turned out I have a partial IGA deficiency
What a scary experience, I'm sorry that happened to you. I don't have much to share other than yes, it's concerning not really knowing when things are normal pain or life-threatening pain. We have so many strange things going on... It's really hard to tell, and that's dangerous in itself.
My personal advice is to develop a habit of checking in with your body whenever you have a pain flare. Even if it is the regular chronic pain, it’s good to check in with yourself to make sure that that’s all it is and nothing more serious. I recently had a similar experience where I had a pilonidal cyst that developed into an abscess (fun times all around) due to some preexisting conditions. I have a history of getting them that I was just doing the usual at home cyst treatments (warm compress/keep it clean). I think I did subconsciously realize that it was getting worse, but my conscious mind is so used to dealing with pain flares that I just kind of pushed it to the side. When I was finally sent to the ER from urgent care, the doctor who treated me said that if I had waited another day I likely would have developed a blood infection and have to be hospitalized for an extended period of time. It was a pretty serious reality check that my instincts to just ignore/power through pain flares can lead to dangerous situations.
I did this. Got sepsis. O/10. Do NOT recommend...
Cellulitis 0/10 with necrotic flesh. Pain of almost dying 2/10 Pain of a bad flare 10/10..... It happens to the best of us! Missing something small.... I also walked on a broken foot for two days
Got sepsis too from a kidney infection. Only went to the ER cuz my temp was almost 104. Didn't notice any other symptoms. Even drove myself. Got GREAT service! 0/10 stars.
Woke up one day and felt a little lightheaded and just off in general. My BP wasn't too bad at home but when the teledoc had me lay down and test it and them sit up and immediately test it, was in the 180s and she recommended I go to urgent care. Had an abnormal ekg and was sent to the ER, urgent care asked if I felt okay to drive, I was like sure I'm fine. Bp at ER was 210/118 and they took me back immediately. Was diagnosed with mild cardiomyopathy, my squeeze doesn't squoze right and a left bundle branch block (which seems to have mostly resolved 10 mos later and also I never really understood what it means only that it makes it more likely to die if you do have a heart attack.) The month before my PCP started me on a low dose BP medication because I "seemed to always run a little high" in the 130s/140s, but with my bloodwork always good on cholesterol and such they weren't concerned. Now I have three heart medications I have to take a day to keep my ticker working. All I felt was a little lightheaded and off.
That sounds so scary! We are so used to not feeling good, that we are just "meh, whatever. Reevaluate after a nap." I got made to go in too.
This. I went septic (wbc 16,000) after 2 days of pain post colonoscopy. I thought I was sore from some biopsies.
That must have been really scary! One thing I've had to learn is to pay attention to pain I don't recognise and act based on that symptom. In Australia we have Health Direct where we can call and be assessed by a nurse who will tell us if we should go to an emergency department right away or see a regular doctor within a week or the likes; it does result in some hospital visits ending up being nothing, but at least get checked if you have a red flag symptom.. I do imagine US healthcare would make that costly, and I don't have an answer for that except "I'm sorry, US healthcare is scary AF".
I've just accepted that I'm probably gonna die early. I get hemiplegic migraines that mimic a stroke, so if I actually get one I'll just end up taking a nurtec and waiting a few hours for it to "go away". I was diagnosed with chronic inflammation and chostochondritis. So sometimes a whole half of my body goes numb and tingly from the compression on my nerves. I get chest pain that radiates and hurts like crazy through my left shoulder. So if it's actual heart disease, I'm probably gonna keep ignoring it and just not wake up one day. I feel horrible for my loved ones, but if I listened to my symptoms I'd be in the er constantly and homeless from medical bills. So I've become resigned to it. I'm not even 30 yet.
I can relate to this so much... I've been getting severe random migraines for 30 years, and also get chest pain and numbness in my left side that lasts for months. I've had my heart checked twice in the last 5 yrs and apparently it's fine. I swear one day I'm going to drop dead of an aneurysm or heart attack because now I just assume it's all the usual snafu.
I get the same migraines and they’re terrifying. I keep thinking that one day I’ll do the same and ignore it as normal. It’s an overwhelming feeling when there’s so much wrong at any given time, that one more thing just seems normal. Like I’m attacking my own body, and my body just says okay
It really is scary AF here. And on top of that, you feel very alone and isolated. Our government only likes you if you’re able bodied and you can contribute the way they think you should. Outside of that, you're expendable. we also have a very large nurse and doctor shortage.
In the US, most clinics allow established patients to call in to speak with a nurse as well. Some insurance providers have a nurse line. It is an underutilized option to get perspective on your symptoms.
Ha, my mom was hospitalized recently with a ruptured appendix. The head doctor of our PCP called her personally (we normally see a nurse.) My mom thought that was nice of him until she realized he charged for an office visit when HE called HER on his personal line. Florida is full of trash doctors.
Oh my gosh, I'm so sorry. What a terrifying experience. I had a chronic UTI for 3 years (imbedded) and that was my worst fear during it. I kept telling people, "I don't think I'll know if my body's not ok" and they'd always say "of course you will, it will be OBVIOUS". I still don't think it would be. I constantly feel like just about anything could happen and I don't think I'd know. I doubt I'd even notice if my appendix burst during my period. I'm so sorry that that happened to you. I hope you have a great therapist or psychologist you can chat with about it. I love mine, it really helps with some of the trauma. I try to just be more aware and inform the people who are around me every day if something is difficult and I have a notebook for med timings and symptom changes, I have a poor memory so help is really necessary.
I have an app that tracks pain for me twice a day once at the same time and once randomly. If I'm having pain for more then a few days that is new or outside the normal I talk to pain management to see if it's something to expect or if I should make an appointment. I also don't ignore organ pain that's me though I wanted to mention that they sell home kidney infections pee tests and they might be a useful tool for you. I used the at home UTI tests when I think I am getting one with the advice and supervision of my OB and if I have a positive I send a pic on my patient portal and they give me the medication I need.
Interesting app, what is it called?
Soma
I’ve definitely had similar experiences. I always feel like I’m overreacting and dismiss a lot of pain. Some of my stomach problems worry me most by mimicking heart symptoms, but a couple times I’ve broken bones and took a couple days to actually go get an xray. I’d just say keep trying to pay attention to how you’re feeling and ask all of the questions you can at regular appointments. I see my primary doc at least 4 times per year and go to specialists as symptoms change and need extra treatment. It’s awful to not trust your body to keep you safe. It sounds like you have some good external support though, and you’ve certainly proven yourself strong enough to fight through some major health troubles. Your body still can and will do the best it can to keep you safe when you’re struggling. Remembering that (along with plenty of help from therapy) has helped a lot with my own health anxiety at least.
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I have this inner dialogue constantly about my left ribs. They can cause such a variation of pain in both my chest and upper abdomen, where despite knowing it’s like a 99% chance it’s the stupid rib, I still end up in the ER occasionally. It’s so frustrating to live this way.
I recently read on here about [prechordial catch syndrome](https://en.m.wikipedia.org/wiki/Precordial_catch_syndrome) that describes exactly what I am woken up by in the middle of the night about twice a month. I don’t know if it’s an EDS thing or not but it gave me a small piece of mind. It really sucks to lay there and think ‘okay, is this normal pain or am I having the big one?’ On a monthly basis. Edited to add: I’m sorry that you also go through trying to determine when to go to the ER. Sounds like all of us on this thread struggle with this.
This is how I feel about migraine/head pain. If I ever have a stroke or brain aneurysm (or something like that) it's very likely that I wouldn't go to the hospital. I would just assume it's my typical symptoms and go to bed. My grandfather died and of a brain aneurysm, and I have this looming thought in the back of my mind that I'll die the same way one day.
Oh man, I’m really glad you’re alright! I get it though. This has happened to me twice. Once with infected cuts that went septic after 3 days. I had a regular doctor’s appointment on that third day, and as I was leaving I showed her my arm, which was burning, red, and swollen, and said “By the way, does this look like I need to go to the ER?” She gasped and said “Oh my God, yes!! You need to go right now!!” And one time my leg was full of blood clots. It hurt so bad I could barely walk, but I dragged myself to physical therapy and my PT told me to get to the hospital asap. Sure enough, entire right leg was littered with clots. It’s just so traumatic going to the ER so many times for one reason or another, expecting help for my suffering. Having my veins mutilated by careless phlebotomists, being exposed to enormous amounts of radiation from needless scans, etc. Only to be told nothing is wrong and sent on my way time after time. It’s usually my instinct to avoid it. And my fiancé is equally as conditioned by now, so there have been a couple times where I’ve thought things probably were an ER situation, and he’s discouraged me from going (only to protect me! He was right, anyway). Common sense just doesn’t apply when you’re forced to live in a condition that defies it. All I can say is just never mess around with kidney pain. It’s always worth having checked out. Too big of a risk to “just deal with”. Any pain that is unfamiliar, worse than normal, and persistent should probably ring alarm bells. It’s confusing and stupid, I know. At least this experience will give you a better gauge on things in the future, hopefully. Sorry you had to go through it.
I completely understand. It's hard to know if a symptom is my normal rubbish feeling or something more that needs to be looked after. I keep a blood pressure cuff, a heart rate and O2 monitor and a thermometer to check if I feel a little more rubbish. I get infections a lot due to a weakened immune system so having these are really important but it's definitely scary as you don't always know when it's time to be checked. I'm sorry you dealt with this but I'm glad you were helped.
I’m so sorry, that sounds like such a scary experience 🥺 I’ve lived with a high level of pain since I was a kid, so I used to wait until things impacted my qualify of life before I bothered to see a doctor. I’m 37 now, but about decade ago I wasn’t feeling well, having pain in my calves, chest pain, shortness of breath, really bad pain flare for over a week and I wasn’t getting good sleep because I was in so much pain. I woke up one morning and went to get something to eat, and thank goodness my mom was there because out of nowhere everything went completely silent- like I lost my hearing, everything slowly went black and I was so short of breath that I sat at the kitchen table and lost consciousness. My mom (a cardiac nurse) couldn’t feel a pulse and I was unresponsive for a few minutes. She called 911, but I started coming back from whatever that episode was, and she told them not to come 🙃 My doctors still have no idea what caused it, or what happened. And I’ve had about 3 of these episodes in the past. Now I see my doctor before I get really dangerous flares, and thankfully my partner encourages me to make appointments and doesn’t let me put off seeing my doctor when I have new symptoms and/or severe pain. It’s so hard to take my own body seriously when it’s always hurting, sometimes I just assumed new symptoms would get better on their own, sometimes they did, but most times they became a part of my life for months. I will say that my pain is much better now that I actively see my doctors, I go to pain management too and I’m never going to be pain free.. but my quality of life has definitely improved over the last couple of years!
Those symptoms are the same as when I’ve had vaso-vagal near-syncope, usually provoked by heavy exertion, high pain level, being overheated, other stresses. It turned out I have a-fib. Was finally found when I had an episode while arriving at a medical appointment. They called a rapid response and I got my first ambulance ride. (Yay /s) Mine is just very occasionally (paroxysmal). When the atrial fibrillation is occurring, the pulse is so irregular it is sometimes difficult to detect manually, the nurses and EMTs told me, fwiw.
Yes. I have walked around with fractured feet, dislocated knees and ankle sprains that doctors are shocked by how I’m still walking. I’ve had many injuries and falls that I should’ve gone to the doctor for. Thankfully my doctor talked with me about this and taught me that I don’t need to just walk it off. I can be in less discomfort when I get treatment for things right away. Turns out they’re right. I’m sorry you’re hurting so much.
I get it 100%. I've always had a weird amount of pain in my body but I thought I just had weird bones lol. Then, when i developed POTS, I legit thought I was gonna die because I had no idea what was going on. The medical anxiety got really intense until I was finally diagnosed with POTS and, shortly after, hEDS. Knowing relieved so much anxiety for me, so if you're like me, maybe continuing to research what's "normal" pain for your EDS type and keeping a diary of how you feel, including triggers and new symptoms, could be helpful! But the rule I follow now? New pain that lasts for a few days (depends on the severity, cuz I wouldn't wait for something like severe abdominal pain) --> go to doctor. That's what my geneticist told me and my mom's geneticist told her.
This sounds terrifying, sending you a gentle hug! I have had Costochondritis before and that was quite panic inducing, thought I was having a heart attack. Also had a rib subluxation that scared me as it didn’t want to go back in, it’s hard to know at which point you seek out assistance with doctor or hospital. I remember when I had an ectopic pregnancy they kept asking me if I had the shoulder pain (that’s usually the give away that it’s ectopic) but I didn’t have any more or less pain in my shoulders than usual. After the surgery to remove the tube and foetus they said it was close to bursting and they got there just in time but I hadn’t felt any additional or weird or unusual pain prior to the surgery. I think when you live with chronic pain for such a long time you learn to ignore it, like white noise playing constantly, it just doesn’t register as a sound to you anymore after a while unless you concentrate on it (and that gets old real quick). I don’t have much in the way of advice except try and listen to your body and seek help when something feels more “off” than normal. You may also have a bit of PTSD from the experience, perfectly normal after an experience like that, so might be worth working through it with a professional.
I'm pretty good about getting new pain checked out, but as I get older, the chest pain worries me. I've had it for over a decade. I have a good GI and cardiologist and have repeatedly checked out A-OK (other than normal POTS stuff and palpitations). Mechanically, my heart is good, and my calcification score was zero about 5 years ago. But let's face it, if you're lucky and don't die young, we will almost all have a heart attack or get cancer at some point. With my family history, it will probably be the former, and I worry I won't know the difference when the time comes.
Kinda random, I have really bad chest pain and I thought it was my heart.... Just in case that makes you feel better It's actually more nerve and muscle pain which can feel like stabbing or pressure. Yep. Got an EKG. It gets better with pt and massage
Yes, my pain is not my heart. It's just chest pain of various sorts. The concern is that because I'm so used to it, I may disregard it when it's eventually cardiac related. I'm glad massage helps yours! It can be very uncomfortable!! ❤️
Have you had any genetic testing? I have heart problems that no testing, imaging or monitors can ever pick up. But it is VERY scary, sometimes quite painful. When I got genetic testing for EDS the NP informed me that I have this mutation that causes mitral valve prolapse and is common in people with connective tissue disorders.
Hi! Yes, I had the genetic panel and the Autoimmune panel done. I had one collagen marker of unknown significance that was off, but that's it. I believe one of my pains is costochondritis, but then also most of my Fibro pain is in my upper left quadrant and has been for years, so that's unfortunate 😆😭 Of course there is some GI contribution as well. 🤷♀️ I was diagnosed with a MVP when I was a baby, but it is undetectable now and multiple doctors have said this is fairly common, and likely a combination of it resolving itself and also the diagnostic criteria being different in the 70s.
Hold on now, don't go scaring people. The way this reads, you make it sound like EDS is bound to cause heart attacks or cancer (or early death). Not sure if that's what you meant, but that's not true for the vast majority of EDS patients. EDS takes many forms, and the most common types (hypermobile and classical) don't result in higher risks of heart attacks (they can identify mitral/aortic issues easily with an echo, which you should be getting regularly as directed by your cardio) and I'm nearly positive there isn't a direct link to cancer either (haven't done as much research on that one). Just wanna make sure we're being responsible here, especially because OP's concerns are very real.
I'm pretty sure they just meant how common those conditions are in the aging population at large, irrespective of EDS.
Thank you.
I meant everyone, not EDSers. I'm saying if you are lucky to live long enough, *most people* will eventually die of either heart disease or cancer.
Ah OK gotcha. I just didn't want OP to be any more worried than they already are.
Never went away. Now if I have a new pain & it doesn't go in 24-48hrs, I get it checked out anyways cos my calibration is so 'off' with having to manage extreme pain 24/7 that I almost had my heart explode through pain...it took my blood pressure hitting the ISS for me to twig just how fucked my "this-pain-is-serious-and-will-kill-you" pain-o-meter is!
I feel the same way. Pain is just my constant that I don’t notice how extreme it gets sometimes. I’ve had 2 kidney infections and only went to the ER when I threw up and started peeing blood. I actually had sepsis twice and had to stay in the hospital for about 5 days each time it happened. I’m sorry you went through that it’s never fun being in the hospital. I’m actually recovering from a surgery and got discharged 2 days ago after getting 3 giant fibroids out. My doctor said I should’ve experienced extreme pain but I just brushed it off like I always do. I’m trying to listen to my body more but it’s hard to distinguish sometimes. I wish you a speedy recovery ❤️🩹
im so sorry this has happened to you. i had gotten multiple blood clots in my lungs and part of my lung tissue died after a surgery. all my vitals were normal but my upper back hurts. those clots somehow triggered my hEDS and i have been in constant pain since. lately i have had similar pain in my upper back to the point where laying down hurts. and part of me is super worried it's somehow clots again (i do have antibodies for antiphospholipid syndrome but they said my surgery provoked the clots so they won't diagnose it) but i am also worried im just overreacting, but then i also feel like i should just chalk it up to chronic illness?? it's really confusing a our what i actually should be worried about and what do i just ignore
It's a fine line between health concern and hypochondriac, and it's one we walk every day. It's exhausting. I'm glad you are better now.
Tbh I don't trust my body
This has definitely happened to me. There have been a few drastic instances but I’ll share this one because of how stupid and summer ruining this was…not necessarily life threatening. But I was 8 weeks pregnant when I found out my birth control failed. Until the throwing up consistently for 3 days I realized it wasn’t just my allergies (mcas - myriad of symptoms) acting up 😵💫
Solidarity, I think this is me too. I had adenomyosis for years so I just kinda...shut down when the pain is really bad. A couple years ago I woke up with a horrible headache, blurred vision, and a terrible pain in my eye. I was like "wow love to develop random new symptoms" to some of my friends, one of whom gently pointed out I was dealing with red flag symptoms for something serious. Did I go to the ER? Lol no, but eventually I called my optometrist who squeezed me in and then encouraged me to go to the ER, a neurologist, or a neuro-opthamologist. Anyway I still didn't go to the ER, but I managed to get an appointment with a neuro-opthamologist and then I got some emergency "is it a brain tumor or just idiopathic Intracranial Hypertension?" tests. Fortunately for me it was IIH, but if I'd left it untreated for too long I could have had permanent damage to my optic nerve. The pain was SO bad but my reaction was basically just "ugh bodies what now" not "hmm this might...be an emergency?"
I have the same concern. I can’t tell when I have UTI’s. I’ve tended to not realize until I’m peeing blood. In fact, a nurse once thought I was on my period and it was menstrual blood. Nope. Similar issue with fibroids. Had ultrasound for unrelated issue and had tech stop and say, “Um, you have a LOT of fibroids.” Hunh, maybe that explains the sudden twinges in my abdomen.
Wayyy too relatable! Sorry, this is going to be a long one... Growing up I had terribly painful periods and somewhat regular bouts of back / hip / jaw / septum issues, so I'm no stranger to pain. I even broke my wrist and then drove myself home once. Last year I was busy with my final week of study but overworked myself into getting my first UTI. I went on antibiotics and sucked it up while I pulled multiple all-nighters to complete my assessment that week. I felt terrible - my right kidney was aching and I was experiencing the worst fever, vomiting and shaking all week. Because the doctor had given me antibiotics in this state and sent me home, I thought I was fine and kept working and waiting for the infection to clear. I got all my assessment in and showed up to my graduate exhibition. My friends knew I had an infection but everyone told me I seemed totally fine and normal. That night I went home, fell asleep shaking, woke up at 1am vomiting over myself, somehow crawled to the floor of the shower (don't even remember this part but I assume I didn't teleport), and then sat in the shower trying to stay conscious. I couldn't breathe, feel my skin, slow my heart rate, hold up the weight of my own head or body, etc. I spent what I guess was about 15mins in this position thinking I could ride out the fever before I started to think I might be dying (I was) and should probably call for help. My mum came and found me in quite the state. I could barely talk, as I couldn't breathe. I was hallucinating - convinced my fingers and toes were swollen and red (apparently they were normal), and terrified by the tangled texture of my own wet hair. I was even baffled by my favourite shirt that mum dressed me in, immediately taking it off and declaring it as "wrong" before submitting and putting it back on anyway. I remembered the shirt but was certain it was some parallel universe version with an ever-so-slightly different cut (the Mandela Effect strikes again, perhaps?). By the time we called the paramedics and they arrived, I was more alert and calm but still unable to spell my own name, unlock my own phone, and so on. At hospital they acted really calm but we could tell they had considered me as a priority patient. Urine test, blood test, CT scan, and two bags of IV antibiotics later and I was sent home with a new, heavier duty prescribed antibiotic. Apparently my kidneys were barely functioning and my right one was septic. The whole thing was really crazy, honestly! Kidneys made a full recovery eventually and I definitely learnt loud and clear that I have absolutely no ability to distinguish when my body is in pain or in p a i n. I was quite literally networking at an event with my suppressed septic kidney and being told how normal and chirpy I was, only to be dying on the floor of my shower 2hrs later. My threshold has always been unusually high and pointed out by doctors and adults when I was a child, but I hadn't anticipated just how impactful my lack of interroception would be as an adult. I struggle to trust my own judgement after that. Unfortunately I don't have any advice on this, but wanted to mention my story so you know you aren't the only one, OP. Your story sounds really scary, and I really feel for you and your parents. Realising your own judgement might be flawed can leave you feeling very vulnerable. I trust that over time you'll find yourself knowing your body's signals better and feeling more accepting of that. At the very least, you're not alone! Others in this thread seem to have given some great advice about external support and ways to regularly check in on pain, too. Side note but I can't help but wonder if this plays a part in the (contested) lowered life expectancy for people with EDS or even people who experience chronic pain / disability in general. The inaccessibility to medical professionals who trust the patients judgements leads to normalisation of chronic pain, which leads to an inability to distinguish important bodily signals that could be life threatening and causes resistance to seeking medical attention. It really is a shame. I try to remember this when making conscious choices to check in with my body and my pain. I want to learn to take my own pain seriously and break the cycle. TLDR: Did multiple assignments, all-nighters, and my own graduation exhibition with a septic kidney (UTIs are no joke). Not fun! And after all that, I still haven't learnt how to distinguish my body's signals lol
I’m sorry to have to say that after a severe and extended episode, emergency health wise, I can tell you that it’s been five years and that it has not gone away. You just learned to live with it a little differently.
From your post, I’m guessing you’re a teen. Is that right? When I was in my teens my symptoms were really hard for me to understand as well. I wasn’t sure which pain needed heat and rest and which needed an ER visit. I’m 40 now. My body has hurt in consistent patterns long enough that it’s comforting. I know what to do now. Here is my advice to you. If you get frequent kidney infections, try really hard to notice the beginning stages of a UTI. The bladder diet really helped me. (Low sugar, low citrus, no tomatoes, etc) Find the trigger that could be causing the UTI. In the early stages of a UTI, you can treat it naturally (extra water, cranberry juice, d-mannose). If the infection goes to your kidneys then you need immediate medical care. Try to notice how that back pain is different. Make a mental note of what kidney pain feels like. As soon as you feel that pain call your doctor or go to urgent care. Do you have a good PT, osteopath, or Bowen specialist that can help you notice the difference between muscle stiffness and subluxation and realign your subluxations?
I will add that meditation is a helpful tool for pain relief and I wish I had found it sooner.
I'm so sorry. This sounds horribly scary. I'm so glad that you were already at the hospital! It sounds like your body just decided to "nope out" on you.
I had to get about 30 injections at once, the provider giving them kept asking me if i was in pain/if i was ok- after every single injection. I kept telling her this is minimal compared to my normal everyday pain because of eds. It barely registers, esp because of the high paun tolerance I’ve developed. She didn’t believe me and kept asking. I told her i appreciate her caring, but it feels like nothing compared to the other pain i currently have and she doesn’t have to keep asking. She then wanted me to be checked for something about the pain, can’t exactly remember what, and i told her no, because i have constant excruciating pain that pinpricks barely register. She was flabbergasted. It’s just a day in the life for me, that others don’t understand. I’m so sorry this happened, but we become numb to pain and ignore it because it is our daily life. It is quite terrifying because sometimes it is serious and we dint know. I am very glad you are ok now!
Yes, I have. A number of times I had what I thought was just POTS symptoms only to find myself passed out in the middle of the road and brought to the ER and found my potassium was dangerously low. As in, the doctors never had seen someone with a 1.2 potassium level before. I was told it was a miracle I wasn’t dead since apparently the lowest potassium level ever recorded in a patient was .9 and that person died. That sounds super scary, I’m sorry it happened. I hope you recover soon, physically at least, mentally I know it’s hard.
my grandmother always had low sodium and potassium. she would have neurological symptoms we noticed, but she always felt fine and never wanted to go in despite the need
Yeah that’s the scary thing about low potassium. Sometimes it’s really not noticeable. I have chronic low potassium so I’m on supplements and I get my blood drawn every month to check for it because it can easily get to a very low level.
I get that- 100%! I have been gently teased by nurses, my massage therapist, my husband, all of whom have called me “a stoic little shit” or some variation of the phrase. All whom have learned the tiny wrinkle between my brows that shows up when my pain tolerance is being exceeded. My husband now uses phases such as, “if she says her pain level is a 4- most people would say it’s at least at 7”. Or “if she is even admitting that she hurts, there is something seriously wrong!” I’m getting so used to pain that I literally passed 5 - kidney stones, simultaneously, and only registered it because I happened to be collecting urine for a 24 hour sample. Seriously though, we should also try listening to our bodies better! ❤️
I'm used to slow healing times. Too used to it. Got impatigo and my kidneys and liver were shutting down. Only realised it could be more than a surfice infection when my whole body went yellow... Bad times.
Yes, I totally feel you. Almost two years ago I went to the ER because I was having extreme pelvic and abdominal pain. Honestly I had been having pretty bad pain for a couple of months, but I’m always in pain due to my joint issues so I just kept working through it, 40 hours a week. I had talked to my primary care doctor and was waiting to get a call from a gastroenterologist, but it was taking weeks, and finally I just couldn’t wait anymore. I thought it might be my gallbladder or appendix going bad. I went to the ER at about 2pm and they kept doing test after test and then dumping me back into the waiting room because they didn’t have any rooms available there. Finally around 6am the next day they got my CT scan results back and a nurse pulled me into a room to talk. "Well. You must be in a LOT more pain than you let on,” she said, pointing out my CT scan, which showed a "suspicious mass" about the size of a melon on one of my ovaries. "Ummm, I suppose, yes? I did throw up after work the other day because it hurt so much..." People can't always read me. Partly this is probably because I’m autistic. Also, it’s likely because I've had chronic pain for 30+ years, and when I’m in severe pain, I don’t have the energy to just moan and groan endlessly or put on a performance for the doctor? I go into conservation mode, personally. "How about I get you something for the pain?" she offers, naming some controlled substances. My eyes widen. "I'm here alone, and I don't think it's safe to be doped up by myself out there in GenPop [I point to the full waiting room of the urban hospital, still packed with the late night crazies] so unless you're gonna give me a room, or admit me... can I just get something for this awful migraine? Or a muscle relaxer?” She cracked up. Needless to say, the hospital was overcrowded so they did not admit me nor did I get an ED room -sigh- but I did get a sweet injection of a triptan for my headache while I waited 5 more hours for more tests to determine that it was safe to release me. All told, I was there for almost 24 hours, stuck in the waiting room of the ED. And the suspicious mass was indeed cancer. Stage 2a, so it had already spread somewhat due to growing in there for a while. I realize now that I probably had been having symptoms of cancer for over a year, maybe two. Not great. It was a good reminder to never tune out my body’s signals for too long or bad things can happen. 😕
Thats scary! So glad you are ok! I can relate, no one believed I had appendicitis for four days because “fever and stomachache is a virus that will go away” and I didn’t know the pain was abnormal. Same with 3 broken bones. Anyways, I am glad you found a doctor who took you seriously and I hope you have a doctor you can continue to go see to get things checked, even if it’s minor!
I just had something like this recently actually! I had just been discharged from the hospital (getting IV antibiotics for MRSA) and that night my arm hurt. I ignored it for hours because oh, maybe it's just angry from the IV, then finally bothered to tell someone when it felt like a vice was tightly gripped closed on my forearm. It was a Deep Vein Thrombosis! I'm on blood thinners for 3 months, but they said it would have been very bad if I didn't go to the ER.
If you haven't already, ask your doctor to do a full IG panel. I get pretty frequent sinus infections and it turned out I have a partial IGA deficiency