r/Fibromyalgia

So the time has come and after another day spent walking and “sightseeing” while sweating and in pain I’m thinking about some mobility aids. I know there are many types for different reasons, conditions or even days but how do I use them without pain? I have trouble using my phone sometimes and leaning on a crane even sounds painful. Wheelchair seems like a similar thing, you need to put some effort in, right? I have problems with both my legs and arms/hands, is an expensive electric chair my only option?

The last few days I’ve been trying to get more steps in. Yesterday was supposed to be a rest day, but I ended up deep cleaning for like 5 hours. I still took ~7k steps.

Today I am sound sensitive & agitated and jumpy. I felt so good walking, wtf? This is bullshit.

Hi ! I’m just wondering if anyone here has experienced a similar symptom like this or if it has a name ? I’ve googled the best I can for the symptom and it’s coming up as Allodynia but I can’t figure it out cause it doesn’t feel like how Allodynia is described online.

The symptom is located in my left arm and can often times appear on random parts of my arms lasting at least a day to a couple days, but it’s a very intense pain in one section of my arm/ skin that is so intense when touched and when I’ve applied pressure to my arm it can be a sudden shooting pain that doesn’t feel like a burn? it can be more sensitive with cold touch and I’ve just applied a warm compress to it which doesn’t hurt either.
There is no redness to the skin or anything it’s just a very intense pain which even makes me wince in pain.

I believe it’s some kind of nerve pain but with imposter syndrome I’m starting to wonder if I’m being silly as my dr isn’t pushing for a diagnosis for fibromyalgia but I am being treated with amitryptaline for it

Thank you for reading I’m just feeling so alone with my symptoms and I’m not even sure what to type into Google so wondered if anyone else could relate or maybe has studied it

🤍

I'm 46f, been dx for about 10 years with Fibromyalgia, Trigeminal Neuralgia, Depressio, Anxiety and bladder weakness. I live in the UK.

My main concern at the moment is how clothes feel. For the past 2 years I've lived in pj's as I find most clothes either feel uncomfortable or hurt my skin. I loved wearing dresses with leggings and a knee length cardigan (absolutely loved cardigans) but it seems the last few years unless its pj's everything feels wrong or it hurts my skin.

Pj's I wear are normally the soft cheap ones from like primark, t shirt and long legs.

Does anyone else have an issue like this?

It makes it hard to go out because if I go out in pj's people give me funny looks but anything else just doesn't feel comfortable or actually hurts.

Any tips or tricks for this? Sleep has been awful with pain. Trying melatonin with little to no luck. It’s just falling asleep that I can’t do.

Hi there. I started developing hand pain about two years ago, which spread to other joints as time passed. For the past year, I’ve been in pain nearly every single day. The fatigue is so bad some days I can’t sit up. I took time out of university, with just one semester left, because I couldn’t find the energy to work, and my brain fog was too bad to write my essays and do work. I was sure that by the time next January rolls around, doctors would’ve found out what’s wrong with me and I’d be getting treatment that improved my symptoms.

Doctors thought it was RA for a long time, but after multiple ultrasounds and X-rays, no inflammation could be found. I don’t have swelling either. I did have an effusion on my knee, but I’m overweight so the rheumatologist just put it down to that. She just sent a letter saying she thinks it’s fibro. Correct me if I’m wrong, but my understanding of fibro has always been that it’s a diagnosis you get when they can’t really put another chronic pain label on it. On top of this, fibro doesn’t have any real treatments from my understanding.

I’m meant to start university again in January. Since I took time out I’ve just been getting worse and worse. There’s been nights I’ve been crying to my husband to cut my hands off, I’m just in so much pain I just want them off. I feel like my rheumatologist never took my pain seriously and didn’t understand how badly this is effecting me. I just don’t know what’s wrong. I didn’t want this to be the answer, just SOMETHING with a treatment that treats the root cause, rather than just painkillers. The painkillers obviously don’t help the fatigue or brain fog. I’m feeling so very lost and I’m scared now I won’t be able to finish university. I feel like a failure. I’ve been a house wife for these past months. I can barely clean most days. I feel like such a failure. My husband had to help me eat the other day, and he has to do housetasks after a long day at work whilst I’ve been home all day. He says it’s fine, does it with a smile, but I feel like such a burden. I just don’t know what to do anymore.

I was already worried I'd hold my family back and not be able to participate in things and now I'm sneezing and even more exhausted than normal. I'm so sad and pissed off. We have a 5 hour drive tomorrow morning and I'm struggling to pack everything right now. My partner is busy doing everything else and now I'm crashed out. I feel so useless 😭 I don't know how I'm going to cope.

Even before my dual MS and fibromyalgia diagnosis, I wasn't exactly a social butterfly - I'm a deeply socially awkward person. I know it's trendy to self diagnose as neurodivergent these days but I've often felt like I might be a little on the spectrum or something. I've historically put a lot of effort into what I guess could be considered "masking" - like, trying to be really aware of my body language and facial expressions, making sure I'm acting appropriately per the social situation. I have bad resting bitch face and I'm one of those people with no facial filter. But now that I'm constantly in some degree of pain, I find it really difficult to focus on anything but putting one foot in front of the other (literally) when I'm walking around my work place, and when I'm seated at my desk I'm just trying to focus on my work and ignore the pain as much as possible until I can go home and collapse.

Quick sidenote: compared to ya'll I think I have a relatively mild form of this. I have bad flare ups sometimes but my baseline level of pain, which I'm at probably like 70% of the time, is mild to moderate. It only gets severe sometimes, particularly right before my period starts. And I also have MS but that's completely stable and causes me no issues, aside from having to get infusions once in a while. So, I'm fortunate in that I feel like I'm (barely) still able to hold down a job and my employer has been pretty flexible with me.

But lately, I've been worrying that my body language, particularly in the workplace, conveys that I'm in some level of discomfort but I think it comes across like I'm super pissed off. I've caught a glimpse of my face in the mirror before when I'm making a pain grimace and I just look angry. I work in a large office setting where the majority of my coworkers don't know I'm experiencing medical issues. My immediate team and supervisor are aware, but I think to everyone else, I'm just that weird angry woman who is always scowling and walking around like she wants to kick someone's ass. People rarely approach me for conversation and I get people kind of like, staring at me like they're trying to figure out what my deal is.

I wish I could wear a sign over my head that says "I'm not mad at you, I'm just in pain".

Hi all.

I have fibro and hypermobility also. I've been diagnosed for about two years now.

Recently I'm finding that driving, sitting on the couch, sitting on the floor, just sitting in general really hurts my hip joints and lower back. It's this constant dull ache that feels a bit stabby at times. Usually if I'm watching tv, I'll lay on the floor on my stomach when my hip pain starts up, but then my ribs will hurt because of the pressure on them. I can't get comfortable laying on my side because my shoulder partially dislocates when I lean on it and if I lay on my side, rib pain again.

Does anyone have any experience with this and how to find a position that doesn't hurt? I'm just so tired of always been so incredibly uncomfortable 😣

Hello everyone sending all a big hug 🫂. I’ve had quite year, I got diagnosed in February this year, got married in July and about a week ago I found out I am pregnant. I am very happy about my pregnancy and looking forward to this journey, but obviously with fibromyalgia in the picture I feel a bit overwhelmed. I don’t take medication anymore because my symptoms are very manageable up until this last weeks.

Recently I’ve had pain in my knees and ankles as well as lower abdomen. ( I’ve checked with doctors and everything is going very well so far with the baby). I wanted to ask all of the mums in this group about their journeys, and how did they cope with pain during the pregnancy? I haven’t told my Ob/Gyn yet I guess a bit scared of them not taking me seriously if I think something is wrong. (I’ve only met him once so far and he seems very nice empathetic and understanding it is more of a me thing really).

Thank you in advance for all the advice ❤️

So I got put on pregablin. I like it except for how it's making me gain weight. I have an insatiable appetite. I have never experienced something like this before. I'm eating everything and I never feel full. I'm ballooning up at a rapid rate. 20lbs in a month. I've started taking chia seeds with 25 grams of fiber. I drink over 130 Oz of water a day. I'm drinking coffee and tea. I've tried taking meds at a different time. I started working out when I can which is only every 3 days because the pain is usually bad. I will be talking to my doctor cause this is mental how fast it happened. Is there anything I can do to make the cravings stop? Will this feeling go away? I have to be on this medication for extreme nerve pain. I can't go back on gabapentin. It made me crazy.

Hi all.

I’m in lots of pain every day, which really restricts what I can do as a hobby. It’s starting to get me down sitting around and not doing much all day. I read a lot, and swim when I feel up to it, but above that I feel a bit stuck and bored. I tried colouring but it hurt my fingers.

Does anyone have any hobbies they can recommend that are pain-conscious please?

So, over the last week or so I've had a few occasions where spicy food had made my mouth feel extraordinarily hot.

Now I can't eat anything with any spice at all! I love spicy food. I've been eating spicy food my whole life.

It could be the fibro itself, or it could be one of my medications. I'll ask my doctor on Monday.

hey all. I (25F) started with a new rheumatologist who thinks I have fibro, ME/CFS and HSD, and that I have also been dealing with greater trochanteric pain syndrome as a result I think? Early days but I’m in desperate need of advice today as I’m at my wits end. Sorry this is a long story but I’m hoping context will make how I’m feeling make more sense.

About a year ago I got this crippling pain in my lower abdomen, on the left side. I went to my local regional hospital (I’m Australian) who sent me by ambulance to a city hospital to have scans, but the ER doc didn’t want to because my urine/bloods were clear and to be careful of my “delicate feminine parts” (I know, fuck this dr). anyway after a week of pain and a pelvic ultrasound, abdominal ultrasound and CT scan I got no answers and the pain eventually improved.

well, fast forward to now and I am having the same symptoms. it has progressively gotten worse over a few days and is worse when I move or get moved e.g. bumps in the road or when I take a deep breath. the pain is a dull ache that radiates up my back/side/ front and down into my thighs. as most of you probably can relate, i almost always have some degree of pain, and this feels very different to my GTPS or anything else.I took meloxicam last night to try and help but it was no better today. I figured I’d just jump straight to that, as over the counter meds rarely help except for headaches. after some encouragement from colleagues I left work early and went to urgent care. the nurse practitioner tested my urine (normal), felt everywhere on my stomach and back EXCEPT for the spot I specifically described being the source of the pain, and then gave me a referral for a pelvic ultrasound as the only thing that made sense was ovarian cysts, and to book an appointment with my GP for a week’s time. I asked about pain relief in the meantime and she told me to take paracetamol and/or ibuprofen. they didn’t even give me the option to wait for the doctor. the best part was that she wrote “princess” in sharpie on my urine cup. I don’t even know what to make of that? did she think I wouldn’t notice, or that it was funny? was it somehow a big misunderstanding??

either way, I went to my car and cried. I am waiting for my rheumatologist to get back to me now, I don’t want to go for the ultrasounds unless she thinks they will be beneficial because it’s honestly energy I don’t have and I don’t think it’s going to help. as I said, I did all that shit and more last time and didn’t have an ovarian cyst, they literally found nothing and it was so frustrating and upsetting. I don’t really want to go through that again. but it’s the first time I have refused medical advice like this. this was literally my first day back from leave, I feel so guilty for leaving work for literally nothing. I came home and my partner had set up the bedroom for me to just rest, which I appreciate more than anything. I took some ibuprofen and am resting, but the pain is still there. it was so bad last night I barely slept. but I just feel like I’m making it up in my head. my partner offered to take me to the hospital if the over the counter stuff doesn‘t work, but honestly it just feels like it would be yet another exercise in futility.

thanks to anyone who took the time to read this. obviously I’m going to my usual doctor and waiting on my rheumatologist’s suggestions, but I am open to any suggestions or would love to hear if anyone else has dealt with something similar.

Hi everyone, I am 23F and I was diagnosed with Fibromyalgia like a year or so ago? About a month ago, instead of going to my rheumatologist, I was sent to the pain clinic to see if I actually had hEDS instead of fibro. From the start, I was immediately disregarded. I was told that it’s definitely fibro, he wasn’t going to bother with even attempting to look at hEDS, and that I should take magnesium and turmeric, look a couple videos up online instead of going to physical therapy and I’ll be good as new. He also upped me to 300mg of gabapentin 3 times a day and a muscle relaxer, despite my insistence that the gabapentin didn’t work all that well. I thought maybe this would be a one off occurrence and I had my second appointment today.

It lasted an entire 6 minutes. He took me entirely off the gabapentin, and the muscle relaxer because i reiterated that it wasn’t working and I was waking up in massive amounts of pain again, as well as going throughout my days in more pain than I should be for being on gabapentin 3 times a day. When asked what else we could try, he said there wasn’t anything else but something similar to gabapentin. He prescribed pregablin at night and then prescribed flexeril for night time as well. He explicitly told me that the only other things that he has left would be opioids and he is not going to prescribe those to a 23 year old.

I literally don’t know what to do. The gabapentin wasn’t really helping and neither was the muscle relaxer but like,, I don’t want to just raw dog my way through life without these meds especially only at night. Sure there’s Tylenol and ibuprofen but there’s only so much you can take and it isn’t the most effective out there. The way these appointments are so fucking quick, like I can’t even get over the shock factor before I’m being pushed out the door and being told to come back in a month! I’m going to be in even more agony in the mornings and afternoons.

I literally already had to get a shower chair and my primary care doctor prescribed me a wheelchair to see if we can get that covered by insurance because I keep having possible non epileptic seizures due to dysautonomia. So I mean I have options to help me get through the day so I’m not standing up all the time or trying to walk with a cane in an attempt to keep both possible seizures and pain away. but like dude!! What the fuck do you mean there’s nothing else for me to try. I’m so frustrated and tired and I left 30 minutes ago!

I am 29yrs old with fibromyalgia, POTS, migraines and more. I’m in school, work, and have a toddler. On top of that I also have a … not very understanding or supportive partner. I am realizing more and more as time goes on that I cannot mask the way I used to. I’m looking for any aids you use that make your life easier (obvious or not.) Bonus points if you can add a link (extra bonus if it’s Amazon because that’s most accessible for me right now even though I don’t like supporting them.)

Just curious really. For me it's about 3x per month right now. And when I do, it's probably the only thing I'm doing that day

Hi all,

I apologize if I didn’t flair this right or if this post is somehow against any rules. I’ve posted a similar question in r/AskDocs, and following that this community was recommended as another place to post my question. I’ve had a lot of things going on with me health wise recently, and I have no idea what it could be. I feel crazy describing my symptoms because none of them seem to connect, but I swear they all started around the same time period. When I describe my symptoms, the doctors I’ve been to don’t understand what I’m getting at, and neither do my family. I don’t really know what more I could say or how I could emphasize the discomfort any more so, and I’m really just seeking clarification on what it all may be so I don’t feel like I’m going insane.

I am a recently turned 18F, with no prior health issues besides some inflammation around my right knee due to a muscular imbalance. I’ve only ever drank or smoked weed a couple times, just experimenting. I am 5’3, and weigh 150 pounds. As much as I can remember, all of the following issues began early last year, but may have had signs of starting even before that.

The first and most significant thing are these bouts of seemingly random stabbing or pinching pains I get? These stabbing or pinching pains typically happen along my back, hands, and sometimes my legs. They are often so bad I have to take a moment to recuperate. It’s especially bad with my hands, because I’ll lose my grip on things as a result. It just is very uncomfortable to keep my hand in the position of holding something when these stabbing pains happen? Notably, these stabbing pains seem to happen more often during periods of time where I’m stressed, and weirdly enough when it’s colder outside? These stabbing pains seem to frequently correlate with this burning sensation as well, often also around my back and legs.

Besides that, I just feel so heavily fatigued all of the time. I’m often so exhausted that it feels hard to be out of bed more than a few hours, and as a result I excessively sleep due to napping throughout the day. It makes it hard to live out my days and get the things I want to do done. This is despite the fact generally I have a good sleep schedule, going to bed around 9-10PM and waking up around 6-7AM. Though, I’ve had sleep trackers note I don’t usually reach deep sleep, only light sleep.

Atop that, around the same time all of these issues began happening my stomach has become angry at absolutely everything. It wasn’t always like this, and I’ve never had a poor diet. The most I can say is I’ve had a bit too much caffeine at times, and because my family is low income I’ve had a fair amount of instant ramen. But my stomach is upset at anything spicy, greasy, caffeinated, or even just mildly heavy now a days. It doesn’t even have to be all that bad anymore for my stomach to get upset.

The final thing is this terrible stiffness in my joints. Doctors previously thought it might have been some sort of arthritis, but all of those were ruled out. But I often just feel so stiff, it makes it hard to comfortably move. It’s most bad with my jaw, which has been so stiff to the point of frequently clicking, slanting, or locking when I open my mouth. It once locked up so bad I had to put a warm cloth against my face and massage it for 15 minutes straight until it finally let go.

I just feel crazy. I try to describe these symptoms, but no one understands it and don’t see any correlation. I’ve gone to a doctor so many times and have had so many things ruled out at this point and they still can’t place a finger on it. They’ve prescribed me multiple medications such as steroids to help with the pains, or muscle relaxers. These helped minimally with the aches I suppose, but not with much else. It doesn’t help it’s hard to place exactly when these symptoms happen or when it all exactly started because of some memory issues I’ve had for a while now due to depression and anxiety. I’m just really seeking any possible answers.

I was just recently diagnosed with fibromyalgia a few months ago. But I’ve had chronic pain since I was in my early 20s and I’m almost 50.

I’m on so many pain medications even with my pillbox for five times a day, I still get confused. I’m frustrated all the time. I’m in constant significant pain and confused a lot. My mind gets jumbled. Sometimes I have double vision or dizziness or horrible eye headaches. That's just the start of my daily issues. Not to mention debilitating fatigue.

People ask me what’s wrong or how I’m feeling and all I can say is I just don’t feel good. I cannot remember the last time I did feel good. I’ve had nine surgeries in the last three years. I tried to return to work after six months of disability with my last surgery, but within two months I was back out of work because I could not keep up.

They’re expecting me to go back to work soon. I don’t know how I’m supposed to do that. I never feel good anymore? I'm taking so many medications and it’s still not helping me. I go to so many doctors, get so many tests, I’m just so tired. I guess that’s it.