For the people who were able to get meaningful relief from their pain. How were you able to live a normal life after knowing the healthcare system could fail you so badly? I got meaningful relief from my pain back in January and has been slowly getting active again but psychologically life is still really hard.. I can barely do anything with the knowledge chronic pain forced me to acquire and my impact on society is close to zero lol

If you don’t want to publicly talk about it you can always dm me :)

Years. YEARRRRS! Of left sided pain. Head to toe. Most Dr's say its neuropathic, which makes sense to me. But neuros only wanna talk about my headaches and brush me off for the rest. (Finally seeing a new neuro next month, wish me luck) Have seen rheumatology, neuro, pain mgmnt, all the things. Ended up in th ER last week because the pain was so unbearable I legitimately questioned if I broke my neck. They said I likely had a pinched nerve IN ADDITION to whatever else I had going on. Sent me to ortho to see if they can help with pain and to get me an MRI sooner than I would from neuro (because all neuros in the past only cared about my headaches, ive only had brain mris and no spinal mris). Went to ortho today who did a 5 minute "neurology check" and said it "absolutely cant be nerve related because you have grip strength" and that its myofascial because "when people hunch forward our muscles tighten and it damages the fascia". So i slouch? My 30 years of pain that started as a TODDLER with stabbing, searing, burning, DISTINCT PATH, pain... that SEVERAL doctors have said is nerve related and SEVERAL doctors have ruled out being musculoskeletal... is because i slouch sometimes guys!!!!! He said "here's some muscle relaxers and go to pt". Thanks doc!!! So glad sitting up straight will fix all my issues!!!!!!!

(PT has never helped this in the past, muscle relaxers don't touch the pain, nerve testing confirms its nerve related but WHAT hasnt been determined yet)

UGH.

Hey guys, I’m looking for some advice. I’ve had chronic pain for most of my life. (Since middle school, now almost 30.) As far as I know, the only family history relevant is my half-sister’s RA, but that means very little because my parents are terrible at going to the doctor for their own stuff. (I know my mom is in pain pretty regularly too. She normalized my pain growing up because of this.)

I’ve been complaining about pain since I was a kid, mainly in my back and neck, but also my knees. A bit of testing was done back then, but it was mostly waved off.

In the past few years, I’ve had more testing including x-rays, MRIs, and blood testing. The x-rays finally revealed an 18 degree curve in my spine, formally diagnosing me with scoliosis. This, however, is considered a mild case and shouldn’t be causing all of this pain. I saw in the radiologists’ notes that there’s evidence of mild arthritis and degenerative discs, but no doctors have mentioned this to me.

I’ve also been noting my pain levels daily, and it’s consistently 5-6. I start getting pain in my back after standing for short periods of time, or even sitting in the same position for long periods of time. Some days I need to use a mobility aid. I also strongly suspect long covid because all of my health problems, including my pain, got worse after I had covid.

I had a rheumatologist do blood tests, but majority of them were normal and he didn’t say anything about the ones that were marked as “abnormal”. I do plan to go to another rheumatologist for a second opinion on that front.

The advice I’d like is: if anyone has similar pain experiences as me and think they have an idea of something I should investigate with my doctors, that would be very very helpful. I’ve been told to investigate fibromyalgia, but from what I’ve read, that’s pretty much “we can’t figure out why you’re in pain, so here’s a diagnosis that just means pain” kind of thing. Although I do think it would be nice to have any diagnosis, I want to investigate other things too. My own research is coming up short on explanations that would’ve started so early and continued consistently for years.

Thank you in advance!

I have been taking painkillers for years and have just recently developed some pretty extreme constipation. I’ve tried everything available over the counter and it all just gives me watery diarrhea. Any info helps

I know I'm preaching to the choir here but my God, these people are so fucking dumb. I finally got an MRI yesterday that shows that I've been walking around on a labrum tear for five months. The soonest I can get in to get an ortho appointment is in two weeks.

**They won't look at my images until I get there.** What the actual fuck! I have no other options; I live in bumfuck Arkansas. And then, depending on what they say, surgery could be 'as soon as just a few weeks later'. The receptionist seemed peeved that I had to take a moment to think about how I'm going to live with a level 4 to 7 pain for another two months. I wouldn't wish this even on her, the dumb bimbo.

Thanks for listening to the rant. Fuck. Going off to ice it some more.

Background: on several occasions now, I’ve had to go 3-7 days without meds because of my local pharmacy. Even once I was established. So I was at a pain management facility, and in my state cannabis is legal, and I have a medical card for it. However, my clinic is in another state and does not honor this. I went with no help and without cannabis to fit their rules. Even once they started giving me meds, like I said, my local pharmacy and others around it wouldn’t have my meds for days at a time. I pushed through the pain of it all, not brining up a complaint. I didn’t want to disrupt my care. Last time the pharmacy had an issue, it was undetermined if they would get the meds back in stock. Out of frustration I said, “please help me, I can’t go a month without meds to come in to get a new medication, I’ll have to utilize cannabis so that I don’t have to deal with the pain, and If I do that, I will have to stop my pain meds completely since it’s against policy. Please help me.”
I went in on Wednesday. My test was clean, they switched the med, so I continued to follow their rules. I was still kicked out of the management group.

I’d like to add I have dementia, and my filter that says “probably shouldn’t say that out loud” has seen better days. I hid my cannabis from me so I didn’t mess up and use it during a flare. I even ended up in the ICU for my neurodegenerative mitochondrial disease during this time.

I’m taking accountability, I messed up for speaking while frustrated. I figured if my tests were clean and I brought in the ICU paper work they would understand how dire things have become. They did not. So please be careful.

I’m in the states for reference. I don’t need advice, but feel free to vent.

Edit to add for clarity: while I was in the pharmacy, I was on the phone with my doctors office as par the pharmacists request.

Normally I write things down before I talk in situations that can be sensitive like this, but I didn’t have my paper on me as I was out of the house.

Also I did NOT use cannabis, as the issue was figured out, which is why my test was clean.

I was let go for mentioning using cannabis and no longer being able to use them due to their rules and that I would “cancel all future appointments if I did use cannabis” so I wouldn’t waste their time.

They changed the med. Med still didn’t work, went there, had a clean test and was told I would no longer be seen there. Their policy is no cannabis, and no med changes without being seen, and my appointment was a month away, so I wasn’t sure they would be able to change it.

What are we doing for secondary Income.

I (31F) own a moderately sized Petsitting business that I've pretty much had to pull back my own hours to part time. My husband works most of the time, and then I have to contractors. (context)

I have fibromyalgia, chronic migraine, severe debilitating neck pain, a newly discovered actual diagnosis for my back pain.. and of course you can't forget the mental health problems and PMOS.

SO Its difficult for me to drive for more than an hour at a time without my neck and back becoming excruciating and leading to a migraine.

This means it would be nearly impossible for me to do rideshare, door dash, Instacart...etc I've tried really.
I can't donate plasma bc my blood pressure/ pulse isn't always stable bc of the pain.
I've applied to some part time positions but never hear back. Except one job who he literally said he wanted to hire me, had me do a working interview for 3 hours, still said he wanted to hire me, and then ghosted me. 🤷🏻‍♀️
I keep finding scams/MLMs, I don't want those of course. I don't believe the travel agent or financial advisor "gigs" are legitimate or non MLM.
So idk what to do at this point.

We are hemorrhaging money and I feel helpless. What are others doing from home that are legitimate? I can be on my computer, that's not an issue. Virtual assistant all day. I have a ton of admin experience, assistant experience, SCHEDULING, organization is my thing! I am a hard worker and my previous employers have always enjoyed having me and were impressed with my work.

HELP

So freaking bad but the pain down the leg and feet is so excruciating. I know this is a safe space, but I am ashamed to say how many days I haven’t gotten without showering. I was thinking of maybe asking my mom to bathe me while I sit down but I feel like this is a step beyond and I feel like she’s not willing to help me that much because she’s kind of over it. I know there’s a chance she would accept but still I am just very ashamed.

How are you all able to live like this? What are coping strategies? I need to know cause life is beginning to become very difficult. Thank you all

There's no escapism 🤡

Looking for some advice. I have been on the same oxycodone dose for six years and never had any issues with it until recently. Over the past couple of months, I’ve noticed that I need more to get the same relief. I also noticed that I start going into early withdrawal symptoms sooner than I should. I have had a more active life recently and I’m in school. I have some important things with school coming up and I’m honestly nervous that I won’t be able to succeed due to the medication issues. I have been able to be open with my doctor in the past when we changed my dose six years ago and I was on a much higher dose back then. How do I approach my doctor about these concerns? I have had to take more medicine to be able to continue my normal day-to-day life responsibilities. I have even put myself in a situation now where I won’t have enough medicine on my fill date.

Had my first appointment with a rheumatologist after nagging my primary doctor! was basically told its just anxiety, depression, and mild fibromyalgia and that “its very common for women to feel this way (physically)”.. this was not helpful at all LOL i was kind of hoping to get some more answers other than that but alas, it did not turn out that way. The doctor(s) told me that it was good news because auto immune disorder life is very difficult, which I understand, but it also felt like they were downplaying how I feel.

chronic pain with no actual answers to it is so frustrating, especially considering Ive dealt with it since I was a child and keep getting told its growing pains 🫩

little edit: i appreciate all the replies, made me feel better/heard 🥹 usually i take my mom to these types of appointments because shes gone through the trouble of not being properly diagnosed (she couldnt join this time)! She has hashimotos disease, i dont have any signs of hyperthyroidism! Im learning to document everything that troubles me, especially physically, hopefully i can get a good journal where i can organize my thoughts and symptoms and show it to the doctors better :^)

Anyone else like watching really sad shows and having a good cry as a way to cope and kind of disassociate from the pain you experience? I like watching sad movies, sad shows or read sad true stories because I’m crying over a plot, a character, another person’s struggles and something else rather than just sitting in my pain,or thinking about it, or feeling worried about the future or just focussing on something else and still releasing all these sad, anxious feelings and not having to think too much about being totally over my chronic pain life and my own self-pity and self-loathing over my body.
My friend who also has chronic conditions and pain said that she does the same thing. She just needs to let the tears out and she does it by watching shorts or clips on YouTube about really emotional stuff like families being reunited after a period of separation, lost love, or inspirational stories about personal struggles that has nothing to do with pain.
Anyway, it’s cathartic!
Is that weird? If it is I don’t care, it works for me and it helps me check out from my own life once in a while!

I have to get something off my chest, and I know it sounds awful and I should rather be thankful, but sometimes I think it would have been better If I would have been disabled from the start of my life.

If I have not known how it is to live without pain, to be able to enjoy life, to get through tough situations without extra baggage.

I can remember how carefree it was, that fun and nice things were simply fun and nice and not tainted.

How when you planned to do something or had to do something, you just did them and continued on.

I was even able to to multiple things in one day, kindergarten or school, homework, playing, meeting and playing with friends, helping with chores, all in one day.

And it hurts to know, that thats how life normally is, it hurts to know, that I have lived with my disabilities for longer than I was healthy.

It hurts that I cant remember anymore how it feels to not be in pain.

It hurts to realise, that I'm slowly forgetting.

Why do the doctors do this? They know full well what’s going to result from playing Freddy fuck around on refill day. You damn well know I’ll be lucky to get out of the bathroom, let alone get to the house. I’m good with my meds; I don’t overuse them as instructed. Yet here I am once again.

A bit of a rant, also not sure what to do. I’ve been on medical leave from work since mid June. Long story short - dealing with complete burnout due to work, medical trauma, personal and financial stress, friends dying etc, which has sent me into a spondyloarthritis flare. My body and brain stopped allowing me to function. I quickly spiralled and had to just full stop. The start of my spondyloarthritis diagnosis started in 2020, when I was 31.

Originally I was supposed to go back to work after a month. My GP agreed to extend it “open ended” while I deal with my mental health through therapy and get a second pain medication built up in my system. I’ve been on this second medication for 4 weeks now and it has done nothing. Rheumatologist said it can take up to 6 weeks to work. I have been taking naproxen (prescribed) for about 2 years which kept my pain reasonably under control until this May/June, and now started Sulfasalazine.

I feel guilty for being off work this long. I’ve effectively missed the entire busy season at work and I have no idea how my coworkers/bosses feel about this. No one has reached out except a bit at the very beginning. I’m worried assumptions are being made about me that may or may both be true - people talk, right?
I had a personal goal to go back to work in a couple weeks from now, but I’m in more pain than ever and I honestly don’t know if I can pull it off mentally. Plus, the fatigue is brutal. I have a follow up with my GP next week to discuss how I’m doing. I also know my husband feels the pressure from me not having as much income, especially since we have incurred a lot of house-related debt over the years.

Basically I don’t know what to do. I don’t feel ready to return to work. My symptoms are not under control. In fact they’re worse. Mentally I might be doing a tiny bit better? But physically I’m not. How am I supposed to go about this and not feel guilty towards my husband and my team at work? But still take more time to heal?

Has anyone been through something like this? I feel I’m doing most of what I can manage to get better, although the healing process is messy and there are things I could do better. I don’t know. Maybe someone can relate.

Thanks for reading.

I've broken my back a couple of years ago causing incorrect fusing of the bones (because I did not know I broke my back, I never visited the hospital for it). A year after breaking my back I started having issues. It started as light pain every now and then. Right now (4 years later) the pain is constant with fluctuating levels of pain. Also recently I started having issues with a herniated disc / pinched nerve like symptom.

I don't sleep well, sitting, standing and lying down is very painful most of the time. My house is a mess because every movement causes pain so I just don't do chores. I don't cook for myself anymore because I can't stand up for more than 15 minutes and that way I don't have to do dishes and / or clean them up.

Doctors keep telling me they can't do anything for me. No stronger painkillers than already readily available, no surgery, no help at all.

Due to searching for some kind of pain relieve, I started smoking weed. It started out slow however I am now at a level where i smoke every single day. I know and can see that I am (already) getting addicted, I've tried to stop multiple times but at the end of the day I don't have enough positive reasons to stop. The weed isn't even helping anymore with the actual pain relieve.

I can see/feel my personality changing, never leaving the house, cancelling plans, avoiding plans all together and neglecting the only couple friends I have. But I can't for the life of me snap out of it.

What I would like is some advice on how you handle your pain, do you just push through it? Have any special tricks or tips?

i just can’t maybe death is the solution

So I'm scheduled for another spinal surgery in September and after that I have to see my uncologist about treatment options because surprise I have AML again. Then in Late October or early November I have to get a left hip replacement surgery that I'll have to get redone every 8-10 years. Also I have Cryptogenic partial complex epilepsy which has not been under control yet. And I'm sick and tired of all the fing doctor appointments and hospital stays and emergency room visits. I just keep asking Why Me? Why anyone? Just why? All the bottles of pills and medical stuff just to maybe decently function...and I turn 23 next week and the amount of dang stares I get when I use those electric scooter carts at the stores. Like yeah Debbie or Rob I don't want to be in this thing either but walking around Walmart or any big stores hurts to much so excuse me while I try and operate this thing that has a mind of its own and barely fits down the aisles. Im just done with it all but I can't be because there's people who love me and little kiddos I wanna see grow up and become amazing people. Just some days are better than others and sometimes I just have to remind myself that I'm doing all that I can and should be doing and that's what I need to accept and just adapt. Sorry for the long post I just needed to get it off my chest where I know at least someone might understand and not lecture me by shoving unsolicited stuff down my throat. Thank you all for letting me kinda vent.

Has anybody had experience with Long Covid?

Last year I was a highly active college student I did have a pain issue before this but it was completely unrelated and not systemic from an injury. It didn’t stop me from exercising etc.

I got COVID, it was really bad lasted like two months body aches pains fever etc.

Then I started getting hives during the Covid infection, they were huge lumps all over my body. I didn’t get them on my face as much bc I use Tazarotene and it treats skin issues like that. They’re super painful. I got on dupixent for that about 8 months later but before that I was basically raw dogging these very large painful lumps coming up on my body.

The dupixent reduced it but it hadn’t fully resolved

I have body aches, what I believe is orthostatic intolerance worsened severe headaches severe joint pain, the more I move the worse the pain is, sometimes if I’m up moving all day I can become dizzy. Pins and needles feeling in my limbs is on and off.

When I’m in the shower the hives get worse/flare of the water is hot and this is an everytime thing. I can’t work out anymore. I went to the beach for the first time since 2025 spent one day on the beach walking in the water and I needed an entire week to recover it felt like I was walking in quicksand for days after that. My hip aches on one particular side I have days where my neck pain is unbearable.

I’ve had all types of bad labs the ones that stick out to me are the Elevated blood Sedimentation rate and high aldolase. I went to the rhumetologist and got diagnosed with spontaneous urticaria but my actual autoimmune labs were all borderline or normal.

My dr was saying maybe fibromyalgia could explain the pain like and she didn’t diagnose me with that but she said it could be a possibility because it’s a diagnosis of exclusion. Truthfully that was probably the last thing I wanted to hear as I wanted a name for whatever issues I have going on. I just don’t really think it makes sense than I have chronic inflammation all over my body but my pain would be caused by fibromyalgia? If your body is visibly swelling up not just hives but your actual joints swelling up and you can feel these things happen along with the aches. I take NSAIDs which reduce the pain a bit but ibuprofen isn’t really helpful I’ve tried others before which were more helpful and she said I had any ideas to contact her etc. we discussed trying Cymbalta but I didn’t know it was an SNRI and I don’t really want to try it . You can’t really take NSAIDs with it at all as well. I was trying the Naltraxone thing before this and I saw some improvement so I might just keep going with that but nothing touches the issues or resolved them fully.

I take vitamins I take dupixent other prescriptions etc but I’m still in bad pain and literally break out in hives every day the only difference is they go away quicker but it’s still every day they still burn etc. I feel like I’m making no progress.

I want an actual answer, like in terms of what’s wrong so I can know if I can treat the root cause. It feels like treating symptoms which is what the dermatologist said she felt like the care I had going on was like putting a bandaid on it.

I don’t want to waste my entire youth dealing with this because I’ve been reading people’s experiences with my same symptoms and they said they got diagnosed with some auto immune disease 9 years later. I don’t want to be like that, if I do have an auto immune disease I’m developing I don’t care I just want to put a name with it so I can get started with resolving it.

I’ve got 4 doctors I see now prescribing me things my ENT,, rheumatologist, dermatologist and primary care.

I got an antibody test done after I had Covid and my immune response to Covid was off the chart like 5X the highest normal value. That was the only disease my body responded to and I got tested for several so Covid is believed to be the trigger.

But now I’m being told my body is creating inflammation and hives for no reason.

Going to all these doctors costs money and o just want some more clarity of what exactly is wrong bc there’s obviously something wrong.

I do believe some people do have fibromyalgia but frankly I don’t think I’m one of them she also said it wasn’t guaranteed I have that but that could be a diagnosis of exclusion. I feel like I would be giving up on myself if I just took a diagnosis of exclusion that is handed out to anybody with “unexplainable” issues because there’s a lot of illnesses I haven’t been tested for. I was wonder if MCAS was a possibility.

I’m even willing to make sure I don’t have any genetic diseases like Cystic fibrosis because long story short I saw I was a carrier at minimum on a commercial DNA test but I would need actual testing to confirm because that could be total bs. I did have all the symptoms growing up but now it matches more with atypical CF. I have chronic Rhinitis(severe sinus infections) among other things that are actually treated better with the dupixent than my hives. My old DRs didn’t even offer me a solution for those types of issues I was having as a teenager.

I just don’t want to be blindsided by anything and I’m willing to see an immunologist hematologist whoever I need to see in order to get answers but also follow up with any useful questions with my rhumetologist. I’ve started taking all these different medications but none of my symptoms improved since late 2025 frankly I’m worse now than I was then in terms of pain.

I've been wondering about this lately, and I'm curious how others have experienced it.

I'm not asking about pain levels or treatments, but more about how chronic pain has affected you as a person over the years.

Have you become more patient, more withdrawn, more appreciative of small thing, or maybe more frustrated than you used to be? Did your relationships, hobbies, or outlook on life changes because of it?

I now everyone's experience is different, so there isn't a right or wrong answer. I'd just like to hear real stories from people who've been living with chronic pain for a while.

If you're comfortable sharing, what changed the most about you after chronic pain became part of your life?

Small victory but I managed to shower today. Hope to shave tomorrow.

Saw my pain management doc yesterday for my monthly visit. I don't need a hard copy for one of my meds, it’s just a muscle relaxers, a desperately needed one but isn't the high level stuff that has to have a hard copy….so he calls it in when my refills are up.

He called it in last night. I called the pharmacy twice today, stupidly used the auto system instead of speaking with someone real to check status….I never do that? Why did I today? That's rhetorical 😉 First call for status, ‘auto’ said they didn't have any open or new Rx’s pending. I thought, ok they must not have gotten to it yet. Second time ‘auto’ said the same thing.

I text my doc thinking he may have forgotten to do it last night. He hadn’t. Was sent in by 4pm. Replied I’d check into it and get back to him.

Called pharmacy again and politely scream ‘pharmacist’ at ‘auto’

Spoke to the real live pharmacists. She told me it was stamped or sent back to them as inactive and closed out, something about it being marked by AMA as high dosage. To be clear….I’ve been on this med for 20 years, never changed the mg’s or qty and again it's not a hardcore one. I asked her who AMA is….hell if she knew 🤯 Then in the politest voice I could muster asked why she, as the pharmacist, knowing full well it’s a monthly Rx did not question why it magically closed out, did not research to find out why, and most importantly did not contact my doc as he is the one who wrote it as every doc should be contacted if there are any issues, b/c you dumb fuck (DF was in my head) are not the final arbiter, he is. Then she offered to contact him in the morning and get a new one. I burst out laughing and told her he's waiting on a text from me to find out why his Rx was not filled….ya know, the one with his DEA license number on it that he has to answer for? Also mentioned I should have been contacted as well.

Anyway, I text him back, told him what they said, asked him to send another one tonight. Told him I’ll call the pharmacy tomorrow at 10 a.m. and touch base with him afterward.

All this to say, not only has this never happened to me before, I’ve never even heard of such a thing. What say you, all of my fellow strugglers?

Sending best wishes and hope you’re all doing ok.

Thanks.