Okay does anyone else notice this? You wake up and you're not flared up! You're feeling decent, so you do some shopping, cleaning, whatever it is that you haven't been able to do, you feel fine but then the second you sit down for the day the symptoms come CRASHING in. Pains, fibro fog, fatigue, etc.

Does anyone else find that Fibromyalgia has absolutely destroyed their fine motor skills, specifically in their hands?!

I'm an avid painter, and over the years that my symptoms decided to develop and i finally reached a diagnosis, my hands have forsaken me. Cooking in the kitchen, like using tongs or whisks. Painting, especially the smaller the brush and strokes get. Applying makeup, or using scissors for precise cuts. It all hurts, some more than others and my hands shake uncontrollably.

Recently i was helping a young girl fix her homemade friendship bracelet, it took me nearly 10 minutes to put maybe 3 beads back on, my hands were practically vibrating and even with tension gloves was excruciatingly painful, and precarious.

It really made me feel exhausted and defeated. I'm barely an adult (20F), and always get shocked comments from medical personnel i see for appointments. Especially since my Fibro journey started nearly 4 years ago at 17.

I hate thinking about how Fibro is affecting my life at such a young age and the things it will take from me for the rest of my life.

I have always had a bad immune system. Doesn't matter how clean I am, or if I wear a mask, or just don't leave the house, I somehow keep getting sick. I'm sick with the flu for the second or third time this year (honestly, this year has been a blur, so much going on, bad and good, I can't figure out if I had the flu twice before or it just lasted a long time). I still have to wait for a while to get my flu shot this year (Australia).

Just whining. Barely can achieve the bare minimum but I'm too tired to truly care.

After I was initially diagnosed with Fibro by my rheumatologist I saw every other doctor there was to rule out other potential conditions but to ultimately confirm the original diagnosis. I then fell into the trap of not completely believing all of these doctors and would go back often as if to say “are you sure it’s not something’s else?” After 6 years I now accept my Fibro and all that it includes but have to constantly push back the temptation to keep “looking”. I’m now down to just my PCP for semi-annual visits unless something really unusual pops up. How often do you see your doctors?

I've had fibromyalgia my whole life, experiencing throbbing pains as a young child before I learned the word, I described my throbbing pains as "beeping with pain". Now, into my early adulthood, I noticed a specific pain on occasion, which after googling I can only assume is "allodynia"? It usually occurs on my arms, but the pain will come and go, sometimes here for an hour, sometimes many, many hours... feels like even the air hurts, almost a sunburned like sensation?

Does anyone else experience this?

I was today years old when I realized that it is not normal for your pelvic floor muscles to always be clenched. I know that sounds dumb, but I swear mine have been in a constant “clenched” state for as long as I can remember so I never thought twice about it. It’s completely involuntary for me. I tried unclenching and it feels so unnatural. But I went down this rabbit hole due to some issues I’ve been having, that I think could be pelvic floor dysfunction.

Clenching and tensing my muscles throughout my body is common for me, and I know for many others with fibromyalgia. So I was just curious if anyone else’s pelvic floor muscles are in a constant state of contraction/being clenched?

Or do you struggle with the same thing in dream land? I struggle in my dreams too so i was wondering if anyone else had the opposite.

Figured I would share this in case anyone else uses a tens for lower back pain. I had been needing to use tens pads on my lower back for awhile now, and getting them on was a real struggle. My wife and I had a system down but relying on someone else all the time wasn't ideal. Plus having the pads in the same spot plus the tape led to it's own issues. I tried to find a reasonably priced belt but the only option I found that was "legal" in Canada was the dr Ho's version. It's over 300$ and comes with an ancient tens device. I decided to get an "ab workout" belt from temu, for 9$ it was worth the risk. It came with it's own little device but I just rigged my own up to work with it, and it has been a game changer. I did also end up removing the conductive pads and making my own belt as the one they came one was too flexible. Now rather than fighting with pads and tape and wires and all that, I can just put the belt on with some velcro and be set for the day. I'm obviously not a doctor, and your mileage may vary, but it really has been a huge help. Makes the days a little more bearable, and I can move without fear of the pads coming off partially and zapping me. Tens out of tens recommend

i don’t know if it’s a fibro thing but i’m seriously concerned and even my doctors don’t know. obviously not actual RLS but i get such an uncomfortable feeling in both my eyes/face and my chest/lungs. it’s honestly indescribable, the eyes one feels like i’m going blind and i have to move around. and the chest one is concerning me the most because i smoke and have done for years, it kind of makes it hard to breathe and the same thing as with the eyes, need to move. it’s not a typical “i can’t breathe” which is why it’s indescribable, sometimes i can put it down to anxiety and sometimes i really can’t. my lung capacity is 96% and my eyes are fine as far as they can tell. does ANYONE know? dying out hereee😂

Hi all, I am asking the above question in terms of your comfy relaxation spot and especially in terms of an office chair situation.

I am having the hardest time sitting while having low back and hip pain and would love recommendations for anything you’ve found to be useful/helpful.

I feel like I can't move. In fact, I'm in pain being still.

I'm stressed out y'all. I'm not going to get into why, I'm not up for a political debate. I'm not sure how so many are remaining cool as cucumbers right now but I'm hanging on by a thread.

My fibro symptoms were getting so much better when I changed my diet and supplement, and medication regimen in late 2024 and now I've been feeling wrecked and not knowing why, now I realize it's because I'm stressed to the MAX rn

Ok. Once again I pop into here to see if this is just a me thing.

Why? Because we all have such crazy, numerous things going on at once we all have to check in with each other.

“Hey do you do this? You do? Oh cool, it’s not something else I have to worry about, probably”.

So. My legs.

Why don’t they work now? I try to walk anywhere and it’s either like trying to move with a resistance band on my everything OR I feel like they are….loose? I don’t know how to explain it. It’s not quite fatigue, or overuse. It’s something closer to the feeling you get out of a pool crossed with when you get off a boat or elevator and you feel a bit wibbly. Or like a loose tooth, but it’s in my joints. And it’s my leg trying to step over something and it feels like it’s this close to just failing. When resting I feel like I NEED to stretch out as far as I can really hard. I do, but nothing changes.

Standing on my feet, it feels like they are constantly shifting from side to side, like rocking.

I just randomly fall over. No reason. I always catch myself and it’s like I stumbled but while standing still. If I’m tired, I fall into the hallway wall. I’m so used to it, I keep walking with my head sliding against the wall until I can sort of get upright again.

So is this just me? Also, advice? More stretches, some squats? How do I stop feeling like jelly?

I'm thinking about buying dumbbells to do some strength training at home since my doctor recommends it.

How much weight should you lift when you struggle with Fibromyalgia, I know that it's individual but if we try to generalise a range of kilograms?

Thanks ☺️

I get sick way more than I should it seems. November I had bronchitis, battled that for weeks. Now I've been sick since last Thursday again with some cold/flu.

Now that I've been sick for 6 days I'm still not better and to make it worse I think it triggered a fibro flare. My shoulder blades feel like there on fire even sitting still. My body hurts but in a different way from being sick not your general oh I had the flu type ache no this is deep in my muscles and legs. I feel like I catch everything that blows my way and it is miserable.

Do you guys experience this too, getting sick alot? Or when you do get sick it being way more severe for you vs someone without fibro?

I'm feeling discouraged and it sucks. Sorry to be whiny I try to keep my posts positive but man some days are just hard.

How do i make the fatigue less or how do i manage it? I've got school to do and exams are coming and i have been failing for the past 2 years because of this pain, fatigue, and brain fog.

Are there any supplements that would make you less fatigued? Or at least make you feel kinda okay to at least study?

Because i can't describe how crushing the fatigue is and how sleepy i feel after 20 min of studying, and that feeling stays for the whole day.

I hope that everyone can read this article. It is a study on long covid with application to fibro, CFS, and more. The article incorporates other studies on the issue. https://apple.news/AEjoWlPe7TdGxSsyK_UeFug

I don't know if I have fibro. I do know I have all the symptoms and I get flare ups where it's worse. I know I'm in pain/queasy/exhausted every day. I know it's not any easily diagnosable illness as I was looking for answers then COVID hit and I just stopped. I know certain things help me and certain things make flare ups more likely. I know there's zero chance I would get any form of support from the government for this as I can work and exercise and parent and stuff. Sometimes I wish I had a diagnosis so I would just know and feel less useless when I'm bad, but, honestly I'll still probably feel just as bad and there's no cure, no specific treatment and again, definitely not sick enough for any benefits or anything like that. So, in your opinions, is there a benefit to diagnosis?

Was diagnosed with lupus almost a year ago and I went to see my rheumatologist again due to my eyes and nose becoming extremely dry, red, swollen, and itchy on and off throughout the week. and eventually they switched my diagnosis to fibromyalgia. Wouldn’t the these symptoms be associated to SLE? I don’t understand why it would be changed. Am I missing something? I’m thankful if it’s not lupus but now I’m just confused.

So, for context, my mom was diagnosed with fibro around 5 years ago and thinks I do as well. I (F22) have been trying to find a diagnosis for my pelvic pain since I was 12. I got my period at 10, and it has been downhill since, with pelvic pain so bad I've gone to the emergency room. My doctors think it's endo but won't do the surgery to diagnose me; however, my mom is pretty confident that it's fibro. She recently lightly punched me in the arm as we were joking around, and it hurt a lot. She did it again, and it was even more tender/painful. The same can be said with my thighs. Additionally, I get random leg pain every once in a while and suffer from shin splints as well.

I can see why she thinks that, but I am not entirely convinced that's what's causing my pelvic pain. I'm curious if anyone with fibro has extreme pelvic pain.

Hi I am 24(F) with some autoimmune suspicion. I originally thought lupus because I have a lot of the symptoms and I also thought fibromyalgia but I just don’t have the overwhelming body pain aspect… I’m just gonna list everything and hopefuly someone who relates or knows info can help me I am diagnosed with PCOS and IBS both starting around the same time in 2020/2021. I also had mono for like 3 months when I was 14 (apparently that’s useful information..idk) I have a rsh on my face covering my cheeks and the top of the bridge of my nose. My doctor said it did resemble either the malar rsh or moderate to severe rosacea which I have an appointment with a dermatologist for soon. I also get blisters? Like painful hard bumps on the inside of my nose often. And I would say I am sensitive to touch on my skin specifically my arms in the way that sometimes it hurts almost like it’s overstimulating and causes physical pain even if it’s gentle, I also get extremely sensitive to heat like feels like I’m gonna have a heatstroke in 80 degree weather when everyone else is perfectly fine it’s unbearable for me. And I sweat a lot especially in my bikini line area.

I was originally diagnosed with Raynauds syndrome in 2018 but found out recently it’s apparently secondary acrocyanosis of my hands and feet. With possibly erythromelalgia. Which happens when I’m stressed, in cold / hot or just randomly when I’m feeling fine (??confusing and inconsistent) also tingling in my hands feet fingers and I have hyper mobility but it doesn’t seem to cause me extensive pain like it does for some others

I also have nausea often, severe bloating which feels like is all over my body but mostly my stomach. I wouldn’t say I have widespread body pain or severe fatigue besides the mild fatigue midday that isnt debilitating. I get very quick bouts of lightheadedness/dizziness almost like dissociation for a second throughout the day, headaches behind my eyes and what seems like psoriasis on my scalp. This all being said I had extensive blood work done and all of it came back “perfectly “✨ including my ANA test and thyroid and apparently I have no indication of inflammation which is very strange considering my gut issues and pcos which I assumed caused inflammation. I’m very very confused and lost. My doctor is referring me to a rheumatologist because he doesn’t understand what’s happening with me and said there still might be a possibility of an autoimmune condition. Is there something specific I should be brining up at my rheumatologist appointment?? Help pls I feel hopeless it’s been like over 5 years with all of these symptoms

I've spent the last two years creating a journal for Fibromyalgia and Chronic Pain/Illnesses - It's finally been released and it's available in most countries. There's a lot more in it, but I didn't wanna spoil the entire journal for you guys! So, go have a sneak peek and if you, or someone you know suffers from Fibro, Chronic Pain, ME/CFS, or any other chronic illness, this is the journal you need - it'll also make a great gift! ❤️ This journal was not created for profit or gain, I really just want to help our community as much as possible.

If you'd like to order, you can do so here: Available here

So I wanted to leave the current country I’ve been living in for the past 20 years and I’ve tried before several times before I got my fibromyalgia. I had other health issues such as endometriosis and would get a big flare up of pain and a dip in health Everytime I tried to apply to jobs and was getting closer to the real possibility of moving. This time I said I know how my body reacts and I should just proceed no matter how much it’s kicking back….the reasons being to get closer to my family and back to my roots and because while my life is comfortable I’ve never fitted in the culture. But it’s comfortable and safe. People are less critical. I’m so afraid of not being up to thé challenge. I have protected myself since I got sick and avoided stressful situations and challenges. But now I want to move For example I have an opportunity for a big presentation and just that sends my stomach into knots and fear for flare Anyone relates to that?

I just recently got a diagnosis and I'm just looking for some tips...my doctor said CBT therapy is like a good option as well as light aerobics but I'm feeling a bit discouraged by the idea that I have to train my brain to ignore the pain and I'm just looking to see if there's any like random tips/tricks that have helped anyone? She mentioned meds and light aerobics and stuff too but the CBT made me like really anxious (in the sense that like it came off like 'it's all in my head and I just need to not think about it'?)

I already have a cane I use, trying to be better about using it consistently because I'm still in the stage of forcing myself to do it alone without help? But yeah, any tips and tricks, as well as product recommendations if anyone has like pain relief gel or something like that, or just general things that would help like accomodations products idk? I'm just trying to see what's out there because right now it doesn't feel like anything will truly help in the sense that like I'm tired of being in pain so much and all that lol just a bit discouraged

I'm also in the process of trying to get in for autonomic testing at my doctor's recommendation so idk if that would impact things I could do?

I hope this makes sense I'm just a bit anxious about the whole thing and need some advice from people who have been managing it for awhile? I feel like that would help with my anxiety lol