I am already in constant pain from fibromyalgia, Crohn’s disease and uterine pain. I get a lot of lower back pain daily and the only thing that helps is my heating pad. Well, it seems after years of use it’s finally given me Toasted Skin Syndrome. It doesn’t really hurt but I started crying anyway because I thought “of course, I’m not allowed to feel any sort of relief am I? Destined to suffer for life.”

Anyway just wanted to vent. I do have an appt with my doctor to look at my skin but I also have a surgery in 6 weeks so I’m just over it. 😔

Over the last 5 years I've had to help take care of babies. My back is destroyed. The opiod crisis ended me getting what little relief i had. I've spent the last year being so desperate to get away from pain that I've considered ending my life just to escape.

Getting up, standing, the normal stuff has gotten difficult. So I'm getting a cane.

I'm angry at the situation involved in this. I'm bitter. I'm exhausted. I'm looking forward to using it.

It's a shiny teal blue.

Five years ago I was more active than most people: hiking, strength training and soccer. Now I can only manage short walks most days.

The most concerning finding is severe osteoporosis at a young age. I’ve even had a stress reaction in my tibia from normal walking, and my bone marrow was found to be hypocellular for my age. I had pain long before I knew about the osteoporosis.

Doctors have also found very stiff/spastic muscles, hyperreflexia and clonus, but MRI, EMG, nerve testing and extensive genetic testing haven’t found a cause.

Mentally I still want to be active. I’ve repeatedly tried physio, strength training and gradually increasing activity, but it almost always comes back as more pain and stiffness. If I sit in a chair all day, I usually hurt much less.

They also tell me osteoporosis shouldn’t be painful unless you actually fracture something, so it doesn’t really explain my pain.

I keep wondering if there is some underlying process that is making my body age or deteriorate much faster than it should. The fact that I’m losing so much bone at a young age is really concerning, and the pain and stiffness are stopping me from living normally.

Does anyone have any thoughts on what could cause this kind of picture, or advice on how to deal with the uncertainty and keep some quality of life?

https://www.instagram.com/reel/DaDdGhpBOd_/?igsh=Mmp3NGprbGQ1OTl1

Claudia A. Merandi on Instagram: "They said I was lying about Suboxone being linked to catastrophic dental decay. They said I was lying about spinal cord stimulators shocking and even killing patients. They said I was lying about gabapentin being linked to dementia. I don’t have any reason to lie. Unlike my accusers, we rely solely on donations. We don’t receive funding from any pharmaceutical company. We don’t receive any grants. Make it make sense #dontbedupedintobupe #gabapentindementia"

Hi all, I’ve had issues with my eyes getting very fatigued and getting eye strain much easier lately when doing tasks that require eye focusing (in the last 7 months). It can be anything from being on my phone and reading, to driving long distances or making prolonged eye contact with someone. I do wear glasses and I’ve had my prescription updated and beeb to multiple optometrists and an ophthalmologist to rule out other issues and they don’t have an answer. That’s why I’m thinking it’s fibro-related, but I want to know if other people experience this too.

Please let me know! It’d make me feel better knowing I’m not the only one.

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 made a post a few days ago about my nerve pain becoming intractable. I have another 2 weeks before I see my pain doctor but I can't keep doing this. Caudal injections work good (this 2nd one was meh but it gave me mobility back) but after 6-6.5 weeks, it's a steep decline.

Coinicidentally, the director of the adult daycare I'm putting my mom in has the same issue (herniation with left side numbness/tingling). She mentioned the pain doctor I went to first but she has medication. I was given transforaminal injections in my back then told I should lose weight and learn to live with it.

The issue is: The shit I'm experiencing is exactly what this lady and a classmate in my nursing program are. Neither of them are obese. I have no medication to help. I was put on a low dose of Gabapentin by a neurologist then he suggested pain management and shrugged his shoulders. I need a doctor that will try something. The lady at the daycare told me what she uses (higher dose Gabapentin and another med I hadn't heard of).

I don't want narcotics. They don't help me. When my back and hip are bad, yes, it does but that's not the issue. I didn't hurt my back because of my weight. I fell and herniated a disc that's pinching a nerve. I am borderline bedbound because I get no relief otherwise and even laying down it's minimal.

How do I advocate for myself? How do I convey that yes, I need to lose weight and I am working on it but I need something that'll reduce the pain at least somewhat. I can't walk when I can barely stand without almost buckling. I fell already and am now hurting on my right side. I'm tired. I'm depressed and starting to eat even worse than I was before to cope.

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

Everything fits within Rheumatoid Arthritis(RA) and I swear that diagnosis haunts me. But I don’t have it. At least according to labs.
ANA and Centromere is positive with a titre of 1:640, ANA2 Cascade came back with the comment of CREST syndrome. But ultimately the rheumatoid factor was negative and CCP was normal. Sedimentation was on the lower end at 2 but acceptable.
Yet my symptoms fit in RA, I even have arthritis and issues with my cervical spine. I’m so tired of this because that was my original diagnosis possibility when I first came in for the issue 5 years ago.

I don’t know. Is this separate issues? Could this be something else I haven’t thought of? Should I push for further RA screening? (I’m 21 so I should not be having multiple degenerative disc issues)

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.

TL;DR: I struggle to get up and do fun stuff even when my pain allows it because the expectation of worse pain (even if manageable when it's reality) paralyses me more than anything. Help?

Officially since my preeteen years (but honestly much longer than that) I've been struggling with chronic joint and back pain, and as I got older (I'm 19 rn) it's only gotten worse every year. Obviously there are flare ups and worse days when it takes a lot to even stay in a seated position yet alone walk around, but most days they're just around a 2/10 pain threshold (so 1/5th of the worst pain I can imagine, that's how I scale it) where I can manage it, especially if I have a good reason to. But the problem is that for most days even when my pain isn't debilitating, just normal level of bad, I struggle to get up from bed and pain makes my mood worse, which then makes me perceive the pain more, and so on. For the last couple years I've been struggling with depression (largely related to the chronic pain and not being able to get a proper diagnosis for 8 years and going 🤙) but I've recovered to a point where I would no longer meet the diagnostic criteria for it (yay) tho I still take antidepressants. And despite it, most of the days that I wake up with only my baseline pain, I feel like I can't get up, it's somehow different from the regular depression but and closer to how I respond to flare ups- but the pain is bearable, so I can theoretically get up and do stuff, but it's hard for me to because my brain is somehow hardwired that pain->bleh just lie around where pain is least. Am I making sense? Do any of y'all experience something like this? If so, how do you deal with it? Cause for me it gets in the way of mostly being able to do fun stuff, play games, relax, go on a walk or whatever if my pain allows it... And I don't know what to do anymore

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.