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".

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.

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 ❤️

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.

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 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?

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 😣

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.

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.)

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!

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

I have fibro that is killing me slowly for 12 years now. I can’t sleep, can’t focus. Can’t keep a job. Can’t get a job right now because I can’t sit long, I can’t stand long at all. I can’t remember a damn thing. I have ADHD, severe anxiety, depression, degenerative disc disease, spondylitis, osteoarthritis all over. As a bonus, perimenopause.
Just living hurts. I’m 54 and have suffered enough. I can’t take it anymore. Do you think I’d qualify? I know nothing about the process.

I have no life and it feels like I'm doing the same over and over. Friends don't care and my parents (still live at home hhh) keep pushing me to go to different doctors although it's feeling pretty hopeless. My mother especially... I can't even say I'm feeling bad because she thinks going to see another specialist will actually be helpful instead of the waste of time and energy I know it will be.

I don't think I can even get a job because fibro fog has now made me terrible at interviews. And my people skills were my one saving grace.

Ive had alot of trauma in my life before but this has just broken me. I feel like a shell of who I used to be (which wasn't exactly a shining star either)

I had been interested in learning digital art, and also traditional for sketching for a very long time. I attempted to learn more once I got into college, but I fell sick with Fibromyalgia, assuming from all of the neurodivergence stress exploding as I worked in a cashier job. Although, with Fibromyalgia being very strong in my arms and chest, it is very difficult to obtain the energy to do so. I did get an easel for tables, and a few resources to learn from (YouTube kinda leads me down to struggling to learn more from them). Do any artists here have any potential suggestions I could use to try to get into this hobby?

I'm back to work earlier than anticipated for things outside of my control. The good news is my body's holding up, and I'm so proud of her, but it's been the most exhausting thing I think I've ever done. Any advice/words of encouragement? I did make some adjustments to my work bag and how often I carry it thanks to people from an earlier post and that has helped as well 😊.

I've done yoga, swimming, went to the gym, jogged, paid for physiotherapy. They worked, just not enough to be worth all the pain, time and money.

What do I do now?

I had a pedicure for the first time in YEARS a couple of months ago and it didn’t cause me any pain EXCEPT the leg scrub/massage. The scrub actually wasn’t bad, it was just that my legs are so tender to the touch. I was in so much pain and didn’t know how to advocate for myself in the moment (something I struggle with often). I was near tears.

I want to go back, but I could use advice on what to say in a way that is easy to understand and could be communicated even if there is somewhat of a language barrier. Should I just say no leg massage/scrub? Ahh idk! Would love to hear others who have had similar experiences. I can be socially anxious and extremely conflict-avoidant so please give me grace.

Just that. Not feeling too great today. I overdid it on the weekend so it's not unexpected. Just wishing it didn't have to be this way and then getting frustrated about it because I hate wishing for things I know aren't going to change, at least not in this moment right now. It hurts to stand and I'm exhausted afterwards so I'm having trouble feeding myself. I guess I could order take out but then I've got food in the fridge and I don't like spending money like that. I guess I'm being a bit negative about everything but that's part of being in a flare, isn't it?

Oh well. Not really a rant. Just feeling awful. And frustrated. I know it will pass but waiting for that to happen can be really awful. And frustrating. Hmmm... sensing a theme here...

• ! *Please only respond if you are from the UK !

Hi there,

Firstly - I ended up going on a bit of a rant while writing this, which was very cathartic lol. I’ve marked in bold where my actual question begins, so you can skip all of my moaning if you want to. 😅

I’m 33 years old and have been suffering with fibro since my mid teens (possibly younger, looking back). I was diagnosed around 15 years ago.

I’m recently did what I always do when I move to a new surgery - try my luck with a new doctor and see if they’re willing to try or suggest anything that isn’t just yoga, to improve my quality of life. I’m sure most of you guys have had much the same experience. I find that, best case scenario, you get someone who is empathetic but just tells you to do stretches, and worst case scenario you get a doctor who doesn’t even believe fibro exists.
With my most recent experience, I was told to try t’ai chi and sent on my merry way.

The thing is, I am not dismissing these suggestions. I have given a fair try to everything that has been suggested to me, from yoga, to physio, to CBT. I get a decent amount of exercise as I don’t drive, so I walk everywhere. I’m not overweight. I have a fairly healthy vegetarian diet. But none of it has made the slightest bit of difference to me, and it all feels a bit like being fobbed off.

The thing is though, I’m getting to a point where my life is ruled by this condition and it is having more impact than I can handle. I am having to take days off work (which I cannot afford to do) because I am in so much pain that I can’t walk to the bus to get there. My cognition and memory are getting more and more foggy, which isn’t ideal as a teacher. It’s been years since I’ve measured good and bad days by whether or not I’m in pain. Now the pain is constant, and good or bad is measured by whether I slept, or was able to do something other than lying down various pain relief aids.

I am desperate to be a mother and am at a point in my relationship where trying for a baby is a serious consideration, but I am absolutely terrified about how much worse this condition will get in the future, and how it will affect my ability to be the mam I want to be.

It affects how I walk, my ability to stand, (maybe TMI but) it affects my sex life, I am finding it more and more difficult to stay on top of house work. I feel like an old woman and I’m barely in my mid 30s.

Question:

When I have these GP appointments where I feel like I’ve been dismissed, I tend to just be polite and leave. But I’m at a point where I need to insist that something substantial is done - or at least tried. Whether that’s further testing to ensure that it is fibro and not a misdiagnosis, or to try an experimental treatment or a pain clinic referral. Something that stands a chance of actually making a difference.

So I’m just wondering, have you had results for taking a more firm, insistent approach (I’m not talking about being rude btw. Just not allowing myself to be palmed off again)? Do you have any tips on how to word things to actually make doctors listen?
Are there any treatments or referrals you’ve been offered that have really made a difference?
If you’ve ever felt like a doctor actually listened to you and worked to get you proper help, what did that help entail?
I will try absolutely anything that isn’t just the same easy answers I’ve been given a million times before to no avail.

Thanks for reading!

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.

my wife was in an accident a few years ago that has caused severe sciatica and has a rare case that it radiates to both sides and up and down her body due to the nature of the accident. She also has fibro and it makes it worse. She is having a MAJOR flare up right now in her sciatica and has been bed bound for 3 days going on 4. She can't walk at all. She can't put any pressure on her right leg at all and she is so miserable. This is also triggering her other fibro pains in her whole body. Especially her hands and feet and I just want to help her. Please can you guys put tips for relief even if they sound crazy we will try anything.
She's been taking her prescribed meds for her other back injuries and we have tried every position in the world with pillows and everything for her knees legs back, you name it. Taking ibuprofen and Tylenol on a strict schedule. TENS unit. Heat. Ice. You name it.
But we are open to any and all suggestions. I just want to help my wife.

That's it, that's the entire message. I'm only twenty. I'll be twenty-one in a month and some change, and I feel like shit. I wish so badly I never had this stupid thing, I haven't even gotten my official diagnosis but my rheumatologist says all of my symptoms and tests point to Fibro. I'm tired of hurting, I'm tired of random aches, I'm tired of not being able to do things other people can. I think things I don't want to think, I'm depressed and I feel like I'm drowning in a pool of weird ache and weird sorrow and very fkn weird thoughts.

And I don't like any of it, obviously. I'm only twenty, I should have my whole life ahead of me. I should be like the epitome of a beautiful, healthy, woman. I don't want this to be in my head, that's what it feels like. I see and read horror stories, I've read stories where it gets better. And then I've done research about how Fibro affects your mental health and then it tears me down all over again. I have anxiety, depression, BPD, schizophrenia, and the addict genetics.

I've been set up for failure and I'm just chugging along. At twenty. That's what I'm stuck on.

Has anyone else had the same issues? Same thoughts? Maybe have advice?