The past several days have been extra bad with my fatigue. I currently can’t eat dinner bc I’m too exhausted. I drink caffeinated drinks to try to cope with the fatigue, but rn I feel like I’m being crushed by the feeling. I know typical advice for dealing with the fatigue is that you should pace yourself, but what do you do when you pace yourself and still get exhausted? I’m so tired of being tired.

Doc put me on 100mg morning and night. Started with night..got horrible headaches but pushed through then did the morning and night 100mg each. Everytime I stand up I feel like I have insane POTS symptoms (light headed no matter how slowly I get up, heart races when I just walk across the room).

I've been on it for 3 weeks now but I'm in tears ready to quit. I'm a mom of 2 boys and I can't do anything right now because of the side effects. Don't feel like it's helping pain much either I just want to sleep..feel like it's making me depressed.

Do I stick it out? What have you tried that works if it's a different medication? Thanks!

Does it help you? Are there side effects, and has anyone experienced weight loss from you? I have a friend who just started it. And I am curious.

How does one know if they’re immunocompromised? I’ve read from a few different sources that illness can affect people with fibromyalgia differently. I feel like I am one of those people. I get sick at least 6 times a year, with flus or colds. Not only do I get sick more often, but the duration and severity of my illnesses are very intense despite being an otherwise healthy person (27F). That’s outside of all the bacterial infections, lung/kidney/GI infections, stomach flus, and general recurring ailments. Any idea how they might be related?

I injured/aggravated my rotator cuff recently and the orthopedic doc referred me to Physical Therapy.

Now it seems the PT is causing a widespread fibro pain flare-up. The therapist changed the regimen to a milder approach to see if that helps.

I need to heal my shoulder, but it's making everything else hurt 🤕 (I already waited a while to seek treatment because I thought the shoulder pain was fibro!). My least favorite game: "Is this fibro related?"

Just ranting. Thanks for reading. xo

I keep finding myself "waiting" on the next test... Or deep diving into my own research and trying different things for different diagnoses.... Or waiting on my body to bounce back or recuperate from whatever it is that ails me... There's something to be said about "acceptance".... It can be freeing-yet depressing.
I won't ever stop doing what I can to help myself... But I'm still waiting for that "one thing" to resolve... Or that final piece of the puzzle to be put in so we can solve my issues.... When did you stop waiting and just accept and move forward?

21F, just got a fibro diagnosis along with hypermobility syndrome. The rheumatologist seemed to brush it off and recommended some lifestyle changes. "Eating healthy is a good [treatment]... getting exercise too". Is that it? Seriously? I'm genuinely surprised because the pain, stiffness, lightheadedness, and nausea has been so debilitating that I can't even finish school. Is the answer to actually just try to live as healthily as possible?

(-from someone who was a serious athlete too)

And how do you cope with it? Anyone helping you when you're sick? If so who?

When you guys have a flare up is it normal to feel absolutely horrible like you have the flu. I am newly diagnosed in December. Yesterday day I did some household chores laundry swept changed out my bedding and dusted, also cleaned my dining room. This morning I cooked breakfast and did dishes now my body feels like it’s on fire and it feels like flu aches and a headache and just general fatigue could this be that I push myself beyond my limits? TIA for any helpful advice and support

Hi all,

I recently started on Gabapentin. My doctor put me on a low dose to start, 300mg capsule once per day, and it was ok but not perfect. Pretty much it let me get a good night's sleep but not much else

My dosage was upped last week to the 300mg capsule twice per day. And its WEIRD. Like i have all the same sensations in my body that correlate with being in pain -- hyper awareness of a body part or my skin feeling tight/puffy or feeling stiff and slow. But im not registering being in pain? All the signs are there... but i'm not? Just a dull awareness of it all

I'm not feeling dulled mentally-- in fact i feel clearer than i have in a long time because i don't have half my thoughts going "fml ouch ugh so uncomfortable... how do i fix... when can i nap... ugh i wanna go home..."

Has anyone else experienced this?

Its only been about 3 days since i upped my dosage-- maybe it will level out and not feel so bizarre later?

I'm in happy tears y'all. Its been 4 years of pain - my hands haven't stopped hurting since day 1. Taken so much from my life. I've been seeing a very empathic pain management doc after years of negative tests and treatments. My regiment is...fine...I still have pain and very limited physical capacity. But it's my life if I want to stay off of narcotic meds (currently using LDN, duloxetine, and cannabis)

In November, I had UHC insurance, they refused to even consider the spinal cord stimulator trial. Unless I had one of three specific conditions. Well I was able to join my now-husband's work's insurance with BCBS and they don't even need a prior authorization for the trial?? I'm in SHOCK. I was stressing out waiting for the approval, and it never came, so I called the office and he's like "oh it's already approved, see you next week" 😭😭

I know the trial isn't a guarantee it will work, but this is the first ray of hope that I might get my hands back. I would have just accepted my fate if I hadn't been coming to this group to read your stories and see how supportive everyone is. Most importantly, I'm excited to see something like SCS being accepted to treat fibro and can be another option for us

Cross your fingers for me folks 🫡

Thank you so much to everyone who participated in my exercise poll yesterday. I had over 200 responses. I will finish reading and responding to them all, over the weekend. I just wanted to thank everyone, especially letting the ones I have not responded to yet that I really appreciate it.

Thank you, Heather

How many of you feel this way? I got jobs and then quit because the pain was too great, the lack of sleep, the stress. I hate this. My mind tells me it wants to do one thing but my body won't follow. I'm so sorry for all who have no choice but to work a job that causes them pain.

Is itching part of fibro?! I am so ITCHY!!! And sometimes I itch so bad it hurts. I have scratched myself raw and have broken the skin from scratching so hard. How can I remedy this? Sometimes it's my feet and I have had to pull over while driving because I am almost in tears from the pain of how much I am itching. I have had fibro since I was 7 years old, I am 30 now. I can't take this!!!!

Since being diagnosed I have trialled taking amitryptyline and duloxetine. They have helped with my chronic pain but since being medicated I am the most fatigued I have ever been in my life. Before medication I used to wake up early before work and run 5-10km a few times a week and go to Pilates twice a week and walk after work every day. Yes I was in pain but I was active and healthy and it helped my mental health. Now I can barely manage a walk and I’m so slow. I have absolutely no energy and am constantly wanting to nap. Is this the trade off we have to choose from? We either live in pain or live with constant fatigue and no energy to do anything? Has anyone given up the meds because of it? No wonder weight gain is such an issue for so many people with fibromyalgia. The meds are zapping the strength and energy right out of us.

I’m 22 and was recently diagnosed with fibromyalgia back in September. I just started a new job in a kitchen having to stand 8 hours a day and I’m already struggling. I’ve only had two shifts so far but I have 7 more 8 hour shift coming up in the next two weeks and I at least want to go through with those before I quit. How do I cope? After 4 hours of standing I get sick, I have double vision. I drink gallons of water but I still seem not be hydrated, my legs, ankles, and feet feel like they’re on fire. When I come home I sleep for 10+ hours and can barely walk when I wake up. On top of that I have carpal tunnel so when I lift trays it adds to the pain in my body.

The upside to this being a temp job is that I can quit at anytime but I want to at least stay until I get my first check. I’ve been looking into different foods I can eat along with different shoes I can buy to make the pain more manageable/bareable. But I’m curious to see what other people do differently.

Hello everyone, I woke up at 6am this morning (curently almost 8am here) and I've noticed a pattern. Every single time I wake up early I feel awfull. I get a headache, my eyes don't want to fonction correctly anymore, they close, make everything spin. It usually starts the moment I take the bus, which is fine because I can sit, but it doesn't stop when I get off, which is a bit dangerous as I have go down multiples stairs and cross the road.

It's not being sleep deprived tho. Because when I am it's even worse-. I tends to have a thoracic ache, my body temperature doesn't regulate on its own anymore, I have spasms every 10 seconds.

👋🏻 chronic pain sufferer of 10 years (started at age 19). I've gotten diagnoses of tendonitis, bursitis, tight muscles, lots of head scratches from doctors who have no idea. Every now & then when I have a bad day I stay up googling my symptoms and today I'm convinced I have fibro 😅 however, my symptoms are 99% on the left side of my body, but do go from literally my toes to my head & if I'm going to hurt them that whole half of my body will hurt. It feels like muscle aches & I have the trigger points.

Last year my GP ran some kind of blood test for inflammation markers and it was negative and said guess you don't have fibro & you're fine 🤷🏻 she did put me on cymbalta & it didn't help. But my question is, did getting a diagnosis help you at all? Did you have more access to treatments? Not sure if it's worth messing with making an appointment or just continuing with what I'm doing (which is mostly nothing except for laying on a tennis ball when my back hurts and taking Tylenol). I'd be interested if I could get prescribed a regular PT or massage. I've done PT for different things but I never keep up with it after the appointments stop cause I don't have that accountability so I was wondering about a personal trainer but I want someone more medically qualified

Thanks for reading my word vomit

This thought came up as I am battling the flu and am in an ungodly amount of pain. This may be my worst fibro flare ever. I’ve never had the skin pain I see people on this sub describe until now.

Whenever I get a jolt of nerve pain, I can’t help but to make a noise or basically have a mini convulsion. Its involuntary because it’s so sudden and intense. Then poof, gone.

This was how I realized this wasn’t normal, because I’d see the horrified look of someone nearby. I’d explain (casually) what happened, like this happens to everyone and not a single person understood or related. I started getting my pains in high school and in college I really realized other people don’t experience pain like I do.

It wasn’t until I was getting diagnosed with SLE lupus that my rheumatologist suggested fibromyalgia after I described my pain. It was the first time I felt understood and seen.

I developed and was diagnosed with Fibromyalgia 6 years ago. I've never looked into medication before, because my doctor at the time told me there wasn't any medication for it. But now I'm 3 months postpartum with twins and I feel like my body is falling apart. Are there any medications anyone would advise to avoid, or any that particularly helped them?

i'm in the middle of a pretty bad flare, and haven't been able to do my usual pt stuff, so i'm worried that my restless leg syndrome is going to act up. what should i do if it does happen? i don't really know how to make it go away, and it's so miserable to just have to cope with.

I’m a court reporter and have to use a laptop to run my software. Some days I end up having to type constantly for hours at a time (like today- 7.5 hours)

My fingertips hurt so badly that I was almost in tears, was trying to type with alternate fingers, sides of my fingers, etc. It feels like there’s a millimeter of skin between those keys and the bones on my fingertips- they go numb, but it’s the super painful kind of numb? Idk. I also have Reynauds which either exacerbates this issue OR is exacerbated by it (chicken? Egg?) and winter and cold is not helping AT ALL.

I’ve given up on doctors because either it HAS to be carpal tunnel (even though my wrists are just fine) or they see my fibro diagnosis and then it’s “well, fibro sucks doesn’t it? Maybe some behavioral therapy would help divert your focus?” and I knew I’d end up in jail if I had to listen to one more doctor tell me I was exaggerating my pain levels while my husband went to the same doctor because he cracked a toenail on our bed frame and was given a script for pain meds (no joke- I was nearly apoplectic with rage).

Ranting aside- I’m currently researching mechanical keyboards with silent linear switches and silicone keycaps (I feel ridiculous even typing this), but I’m wondering if maybe someone else has dealt or is dealing with this same issue and might have some tips? Or maybe someone who isn’t as close to the problem and can think might have some creative ideas?? Right now my ADHD brain is only trying to see how many songs it can match to the throbbing tempo in my pitiful fingertips and also craving chocolate.

If you made it this far, thanks. Also, I’m sorry. Also, I need a chocolate wrapper opened please.

Is there any decent home herbal remedies out there that help with fibromyalgia? I hardly sleep and the pain is unbearable now. I’m not a fan of prescription medication and will only take it when I absolutely have to. I’m using cbd, vitamin d and a 14 in 1 supplement at the moment as my main pain relief. I was just wondering if there were any decent home remedies out there I could try to help relieve the pain and/or help me sleep? Tia

Does anyone know of an app for android that locks, but also can use for medical services/ symptoms? I was using a mental health app but realized I only use it for the lock. Don't need nothing fancy tho

Hey yall, about two years ago I was diagnosed with fibromyalagia. I has been experiencing chronic pain since I was a teen.

Anyway I kinda feel like fibromyalgia was diagnosed because they couldn't figure out what was wrong with me. I spent most of my teen years going to to doctor for them to shrug my pain off. They told me there was nothing they could do to help me. I'm now 21 and hurting so much worse.

Now I have a larger slew of symptoms. I run low grade fevers randomly, my joints hurt and ache all the time, I get hives all the time, I'm fatigued, also my face burns, like I feels like my cheeks and nose are on fire and they get extremely red. I pusb through this stuff to go to work. But at the end of my shift I am in so much pain I want to cry.

Is this just fibro worsening? Do any of you guys experience this? Im so scared they are just gonna brush me off again. I'm so tired of hurting and no one careing. Or being told that there's nothing they can do. Thisnpain has ruined my life. I've had to stop walking my dog, doing to the gym, I even have to consider how I feel to plan a date night. I'm so frustrated.

Hello all :) I really like to do a mix of combat, step, Pilates, and yoga classes for my exercise. I struggle a lot sometimes with the more active classes but am committed to them as I enjoy them. I just wanted recommendations on comfier gym clothing.

I like to wear shorts and crop tops as I get really warm when I work out and can’t bear to wear too much, but I really want to find sports bras / crop tops that put less pressure on my on my shoulders/neck, comfy shorts that are still snug so I can train, and trainers which take more impact and are super comfy without compromising balance.

I’ve tried Sweaty Betty, Gymshark, Nike and Adidas clothing and nothing is “comfy” and still good to train in. And I haven’t really explored trainers properly. Just had the same pair of Adidas trainers for years.

Any ideas at all? I’m at a loss for anything like this and very new to the fibro scene still!

Thank you 🙏

Hi all I’ve been down the ALS rabbit hole, have a few questions if that’s ok.

I had a panic attack 4 months ago and started twitching all over, a few weeks after started to get weakness in my legs and pain in my legs. I saw a Neurologist who said it’s all anxiety (picture of the letter attached), had a EMG on my legs which was all good and blood tests all good. I saw a second Neurologist as my weakness and pain was getting worse (details below) who said it could be the antidepressants I’m on.

I’m totally lost with this, could this be or sound like small fibromyalgia ? Any help would be much appreciated.

First Neurologist:

https://ibb.co/yFjhQrFG

Second Neurologist notes:

EMG: reported normal Basic bloods, including CK: reported normal Neurological examination: Normal muscle bulk throughout Normal muscle tone No objective weakness Tongue examination: Mild tremulousness noted. This is dyskinetic. There is no tongue-wasting. Tongue movements are in a full range of movement with full strength The uvula is midline with normal pharyngeal elevation. There is no salivary pooling at the fauces. No neck flexion/extension weakness No fasciculations seen in clinic. Full limb power throughout with normal reflexes and downgoing plantar responses Summary: On balance, it seems likely that the current symptoms have been provoked by SSRI exposure. I would suggest a slow reduction in this to see if symptoms settle (it can take up to two to four weeks to see any improvement). If the symptoms do not improve, then I will repeat an EMG in six months (expecting it to be normal) and discuss Carbamazepine as a means of managing neuromuscular irritability in the interim (magnesium glycinate has not provided benefit for his symptoms). I explained the clinical examination effectively excludes a sinister cause for his symptoms

Hi all, I've been doing a lot of reading about how to reduce fibro pain because my 12 year old daughter has been diagnosed. The book I'm currently reading talks about nutrition and two big things stuck out to me. One is all the crap used on fruits and vegetables and two is gluten. So, I'm looking at buying all organic fruits and veggies. That is a pretty easy, albeit spendy, thing we can do. The other is cutting out gluten. I've had gluten free foods and they are pretty yuck and I don't think my daughter would like them. With the organic fruits and veggies, we would all (me, husband, 16 y.o. son, and daughter) be fine with the change. If we took out gluten, I know my son won't change to gluten free and my husband would change somewhat. I'll change over to gluten free with my daughter if we go this route. Anyway, has anyone changed up their diet and found some relief from symptoms? We got a referral to see a G.I. specialist, but I wanted to ask folks who are living with this. Thanks in advance!

I explained that I am still able to walk and do some things, but am limited in the activities I can do and need to rest and take things slower, yet still they all said no, they wouldn’t consider dating someone like me (they were all looking for a healthy active partner). It’s not really surprising, just extremely disappointing and disheartening. It pretty much proves what I’ve already experienced (based on tons of rejections on dates), which is that men don’t want to date or marry a woman with chronic pain/illness. It sucks and it makes me feel so worthless. I just ended a relationship that was abusive (with a man who also had chronic pain) and I am feeling very hopeless about the prospect of being able to find a lifetime partner.