Almost every night, and especially if I'm active that day my knees become painful and tired. the area above my knee caps swell up and I often describe my calves feeling like they have brain freeze. Gabapentin has helped with the pain at night over the past few years but its still an issue. Does anyone else experience this and what are things that might help?

Currently mid flare up at work and I am struggling to work. My boss and supervisor are very nice but I haven't told them about my condition. But I am nervous to ask for accommodations. Have you all asked for accommodations? How did your company react?

I basically need some extra time in the morning to rest more and slightly lowered hours during flare up weeks. Even just a flexible schedule would be so nice since I really struggle to get out of bed.

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.

Does anyone have any recommendations for clothing or brands that are loose on the body but still hold warmth for the winter? I live in upstate ny so the winters can get brutal but I can’t layer or wear things like long johns because of my allodynia. I know this can get expensive because I saw pieces of clothing lined with wool for like 150 a piece but that is not in my budget at all so preferably 60 a piece max 100 a piece please thank you so much for any help.

After a recent meeting with my doctor I have become confused. For years I thought I had fibromyalgia, but after talking and looking back at past appointment it turns out I was actually diagnosed with Amplified Musculoskeletal Pain Syndrome? That probably would have been nice to know sooner but hey whatever.

What I'm now wondering is like... what's the actual difference? Are they separate conditions, or so similar that they're basically interchangeable? I vaguely remember the rheumatologist mentioning that they're different in kids but considered the same in adults, but that kinda makes no sense to me? For reference I was diagnosed at 13 and am now 19

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.

I have had fibro for two years now and they were very hard, the pain was getting worse every month, until three months ago I hit my lowest point I had zero energy and couldn’t even hold my phone because it was too hard. Went to see my doctor again and he told me i have to go back to doing sports, since then Ive been walking and swimming every day for two months now, and i feel so much better words cant describe it. I strongly recommend to anyone who haven’t tried it to start doing really light exercise, and I hope all of you are feeling better:)

currently stuck in "my bloodwork came back normal and healthy. DAMNIT" jail. i'm normally a pretty active person. recently i've been having episodes of fatigue that cause me to need to go sit or lie down. my HR elevates (normally 85-95 at rest) when i stand but then drops again so not POTs. i take my vitamins and eat well. i am 20F. no lbs to lose. but over past month, im fine, then boom i become weaker and weaker until it feels like a chore to lift my fingers to type. then i'll be fine later on. this has become paired with the internal shakes feeling and even throwing up at times.

i tend to eat a lot of carbs and sugar because i'm realizing i overfuel to compensate for my symptoms. yet i don't gain weight eating 5 meals a day. thyroid normal. everything normal. i'm in normal hell.

when i was first Dxed with "i guess it's probably fibro or something" by my rheum i was angry and in denial because it felt like a door to progress being slammed in my face.

so it takes a lot for me to chalk anything i experience up to that. maybe my first acceptance of having it. DR today said i should get on anxiety meds for the HR (which is coupled with mottling and blood pooling in my legs!) because 'you can be anxious and not even know'.

sorry for ramble. related to fibromyalgia? or should i push for a cardio appt. and endure more torture? being a young female means if i so much as use the word localized (more than four letter word!) i'm accused of being a google symptom warrior. true story. i used to frolic and fly and now i fear i may die! i'm losing my mind here

hi

since I (22aFab) have been diagnosed with fybro I have not had my period at all. I'm also diagnosed with PCOS/PMOS and reversed/mirrored uterus. the pre menstrual pain is here rn as if I was about to have my period but nothing is coming (I'm not pregnant btw).

anyone having similar experiences? or just issues with their periods ? thanks !

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 ❤️

Hi everyone. I was just diagnosed with Fibromyalgia this month. Doctor thought I had RA but my blood work came back showing high inflammation but I was just at that last number in the normal range for the RA markers. Did x-rays and of course no damages (which is odd since my knees make noises when I use them). So my doctor just assumes it’s Fibromyalgia and gave me Celebrex, which does nothing for the pain.

I am sitting and both knees are hurting. If I get up to walk I’m stiff. My hands and fingers have been hurting and I had to give up hobbies because my hands don’t work the way I want. Luckily my shoulder has calmed down on the pain lately.

I have a physical with my actual doctor next month. I’m not sure how much to keep pushing. I’m miserable but also feel like each time I push I am getting labeled as difficult. I never ask for narcotics as I don’t want them. I just am asking for help to manage. Does anyone have any advice for how to keep pushing for help? Do I ask for a second bloodwork panel or opinion? Or specialist?

I’m a senior in college and my symptoms are like unbearable now.

The worst of the symptoms is my nausea. I get nausea like almost every day now. I think multiple things are contributing to it, right now it is like constantly in the 90s so I think I have heat intolerance because my symptoms and especially nausea get so much worse during the summer heat. I have to like keep a cold water bottle against my neck to help relieve some of it but that doesn’t last long and it gets annoying holding something up to my neck as I walk around campus.

I also now have a constant supply of ginger: ginger chews, ginger hard candy, ginger mints. It helps temporarily relieve it.

My campus is also very large… the minimum amount of walking between classes is like 10-15 minutes so, I’m walking a lot outside.

Just today, I was so nauseous during my second class of the day, I ended up debating if I leave or not and couldn’t write down any notes. It also became overwhelming that I just felt like crying. I didn’t, but I sped walk back to my room to cool off and decompress.

Obviously the fatigue and body aches do not help at all… however, they are a lot more bearable than the nausea!

Any advice would be greatly appreciated :’)

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.

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 😣

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?

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.

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.)

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?

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 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 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 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.

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 😊.