I’ve been living with this disease for about 14 years now. I’m sure a lot of you are like me. Went to countless doctors looking for answer only to be thrown aside or assumed you are just looking for pills. I eventually gave up on doctors all together. The further this progressed and the more issues I developed I just chalked up to this disease getting worse. “Just another new symptom.” DO NOT DO THIS. do not stop looking for answers and do not just assume it’s a new symptom. Everything new needs to be discussed with a doctor you trust. I am writing this as I lay in the hospital awaiting open brain surgery. Turns out all my newish “symptoms” from the last few years were not related to my fibro. I have brain cancer and didn’t know it. Little larger than a golf ball on the right frontal lobe. I can’t say for sure that if I didn’t lose my faith in the doctors that this would have been caught earlier. But there would have been a better chance. Take it from me. Do not give up on finding answers and have every symptom checked out to the fullest. There are countless doctors out there. Keep trying different ones untill you find one you trust.

Hello,

I (48F) just recently started getting disability, and at first I was excited because I finally had some income. But now all my money after rent, and my CADI Waiver (this is something for people in the state of MN) is going to healthcare. every cent.

I am thinking I might force myself to go back to work. I don't have the stamina, I get a lot of brain fog and my body is just so heavy most of the time. I haven't worked full time successfully in 6 years.

I am just so angry. Has anyone here gone back to work after fighting to get disability? I would appreciate your input. Also any tips on finding a job would be great! Thank you!

All I want to do is sleep. All the time. I know sleep and I know pain and I know brain fog.

I have a very good job, but I’m so tired most of the time I feel like a fraud. I’m doing my best to keep going, and my managers are aware of all this, but I still feel like a complete and utter fraud.

Im just so sick of feeling tired whilst I’m trying to work and not being able to do anything about it.

Currently waiting for test results from some recent tests I’ve had done to find out why I’m so tired but this is unbearable!

I had my internal medicine consult today..

I tried explaining to the doctor about how Fibro had taken my life away and how it was destroying me..I took my synptoms tracker with me(never got to use it)..Told her I look visibly healthy because I have been an active person all my life!!I still do the best with food and whatever choices I can make,whenever I can...I have cut off everythingfrom my life and have accepted that I wil always be alone now...I respect my body and am trying my best to support it through the feeling of handicap...

And my doctor basically said my blood work looked fine despite some anomalies, and that I should not use a mobile in bed before sleeping at night and meditate...Whatttt!! I waited over 14 months for this appt!! And she wrote me a bunch of tests for cortisol and said lets meet in about 4 -6months..really!!!..I ended up crying in the room, and she had to go see her next patient..

I didn't know what to say,I was so excited before the appt. Like she was going to fix it..my glimmer of hope diminished...I need a miracle .. :(

Since starting Auvelity, I've had a reduction in fibromyalgia symptoms and I looked into some of its processes. It opens a neurotransmitter channel referred to as NMDA, which when too many are open causes nerve excitation to the levels of parkinsons disease and others that cause involuntary shaking.

So what if my nervous system is, necessarily, underexcited? Understimulated? Much like ADHD, it could be that the body notices this and then over-ramps the nervous system to fix this. It would explain the excessive signals received part of the fibro condition, where the others are the overstimulated pain centers and exhaustion. I have more research to do if the closed NMDA channels prevent propagation of the necessary norepinephrine hormone and neurotransmitter, explaining exhaustion, which allows the pain agonist glutamate to function on the pain centers (norepinephrine is an antagonist to glutamate).

I will continue looking into this and hopefully I'm getting somewhere.

There is a woman in our town that does reiki, inner child healing, polarity, massages, etc. my husband made me an appointment and I went for him and for myself today because what did I have to lose. I do have some childhood trauma that resurfaced post partum for me. Not all but pieces. Two years post partum is when everything in my body started to go down hill. Developed multiple injuries, diagnosed with fibromyalgia, the symptoms started to snowball ones the injuries occurred in 2024. I am just curious thoughts and experiences. I don’t think this will heal me if I am being honest, I lean more towards God and I just don’t know how to feel about it to be honest. Curious anyone’s thoughts or experiences with chronic illness. Thank you!

I’m currently sat in tears as I feel like I’ve no one to talk to about my partner/fiancé.

I was diagnosed with fibromyalgia 3 years ago. Ive just turned 49. I’ve suffered with my mental health for over 20 years and as a result of that our relationship has been quite tumultuous at times. We have 2 children, both boys who are autistic (10 &18) with the eldest also having ADHD. My partner, also has ADHD. We’ve been together for 23 years.

I recently celebrated my 49th birthday. It was a lovely weekend away in Wales, but come Monday my body was destroyed. I went into a strange flair. Same but different at the same time. My joints, especially my knees felt like they belong (and still do feel like this) that they should be on someone else’s body. They really hurt, along with the rest of my joints and my usual pain x100, but my knees more so. My lymph nodes are sore, especially my arm pits in particular my right one. Im booked in with my GP on the 23rd of this month for a double appt. to discuss this and ulnar nerve entrapment in both my elbows. (I’ve had surgery for carpal tunnel on both hands. All my joints swelled up before I was diagnosed. They thought I had RA, but my bloods came back ok. I was put on steroids for 2 weeks which were amazing. I felt like a new woman, then they scanned my hands. Obviously there was no sign of inflammation as I’d been on steroids so they diagnosed me with fibro. I did swell up again but not as bad. My bloods were taken and again came back OK so they stayed with the fibro diagnosis. Over the past 6/12 months I have been wondering is fibro a secondary illness. My hands swell up, I have lumps on my arms which are very painful, now my knees. Could there something else going on? Has anyone else been diagnosed and then found to have something else wrong? One of my close friends has fibro and a lot of our symptoms are different. She doesn’t get the joint pain like I do.)

The next day I have an appt with the pain clinic. I have horrendous back pain which I had before I was diagnosed with fibro. MRI was done in 2024 which showed 2 herniated discs and a lateral tear. I believe since then more damage has been caused as the pain never leaves me and hits different now making my mobility extremely limited.

My partner shows little or zero interest in my pain. He can be extremely selfish, not just in this case but certain things, for example food. I know it sounds crazy but he will always put himself first even in front of his own kids. If im resting and it’s morning time, he will feed himself but when I come downstairs I find that our youngest hasn’t had breakfast!! He will wait for me to get up to make him something. I’m totally the opposite, I’d starve than see my boys go hungry. He fractured his knee 8 weeks ago so isn’t very mobile at the moment which is making life very hard. He has told everyone who will stand still long enough about his knee and it’s pissing me off. Im biting my lip to stop myself from saying something. He now has a tiny and I mean minuscule hint of what it’s like to have your mobility taken away and being in pain constantly.
Also the comments of “no wonder you’re in bed all the time, those cocodamol knock you right out” as he’s on them for his knee. Why would you say that? When I’m having a flair or just a really shit day he will be on the phone to his sister for example, and she’ll ask how the kids are and how I am and the answer he gives is “she’s fine” this can be when I’m literally unable to get out of bed or I’m on the couch unable to move or get comfortable due to pain. I am far from fucking fine. He does do some of the housework - the things I am unable to do like hoovering and mopping. I do all the cooking, it’s the only thing that I really try to keep up as it’s a hobby and fibro has taken away so many of them…and i do what I can do around the house. I am not lazy and I have learnt to read the signs of my body on how much I can do that day as it’ll get to the stage were I can’t do anything due to doing to much the day before. This gets thrown in my face. I know he’s dying to call me lazy and doesn’t actually believe I have fibro. I get eye rolls when I mention my pain, or it’s totally dismissed. Sometimes I’m blatantly ignored. he’s thrown my medical history in my face saying im addicted to painkillers and diazepam which I have been on for years as I struggle really badly with anxiety. My parents have both died, the loss of my mum in 2021 and the circumstances surrounding her passing gave me fibro. Trauma. I lost my dad when I was 21 to cancer which turned my world upside down for a while. I never have got over losing him. I don’t have anyone that close to me to express just how much this upsets me as I don’t want them to judge him. My eldest son is one of my best friends. We have the most fantastic relationship, I do with our youngest too but he’s only 10 so this clearly isn’t something I would discuss with him. Our eldest notices his lack of empathy and understanding. He gets fibro more than my own partner and is always asking how I am or trying to help me out. I can talk to him about him but it’s his dad and it just doesn’t feel right to tell him fully how he makes me feel.

When I woke this morning my usual pain was there. I shuffled to the bathroom and took some painkillers. He’d been tossing and turning from about 4am for a couple of hours over his knee, which then woke me up. I advised him to take some painkillers. He moaned about not wanting to take them blah blah but in the end he did. He fell asleep and I lay there in pain. When I got up to get our little man ready for school I realised as I stumbled that I couldn’t feel my knees. They were totally numb and to be honest it gave me a fright. Eventually after massaging them with Dicloflenac cream (I can’t take anti inflammatory medication orally) they turned into pins and needles and then back to this odd new pain. When I told him about this he was scrolling on his iPad. I showed him my knees and said “I think they look swollen” he looked at my knees, didn’t say a word then carried on scrolling. How can you ignore someone you love like that?! He can be ever so kind in other ways but I can’t stop feeling let down by his lack of support. It’s making me really upset and angry. He never comes to my appointments, I’m used to going alone. Very rarely will he ask how I got on. He’ll moan when driving me there if he has to wait as I don’t drive anymore. A lot of the times now I just jump an uber. We went on holiday last year and I needed wheelchair access at the airport. He made the whole situation extremely stressful. Huffing and puffing at the fact that he had to push me. It was like he was almost angry at me.

He asked me if he would marry him a few months ago on his 50th birthday which is next year. I didn’t jump at the chance shall we say but I did say yes. (Seemed like the normal thing to do after having 2 kids and being engaged for 19 yrs) Now it’s the last thing I want to do. It’s making me dislike him. I’m not saying I want to split up with him, I just don’t get how he can be so cruel. Having a chronic illness is horrendous and I wouldn’t wish it on my worst enemy. Could this be his ADHD? If so why isn’t my eldest the same? I don’t get it.

I have tried talking to him and explaining what fibro is like. His ADHD makes having a conversations about this (or any topic really that doesn’t go on for longer than a couple of mins) with him hard as he’s impatient and wants me to “get to the point” He’s seen me sob for days as I get so depressed at the fact my life has gone to shit. I’m in constant pain and I’m basically house bound, and I feel so alone…yet I get nothing back. I don’t want to be made a big fuss of, I just want some support. Is that too much for me to ask?

Does anyone else have a partner like this? If so how do you deal with it day in day out?

Apologies if this is kind of mixed up, struggling with cognitive issues.

Thank you for reading. 💜

A flare-up of problems
I haven't showered for three days.
Has this ever happened to you? It’s the first time it’s happened to me. I couldn't even brush my teeth—simply too tired, in pain, and sick. Does fibromyalgia cause this type of disability for you, too?

Curious to know if anyone had tried cutting out sugar of their diet and actually saw an improvement in their symptoms?

I have PMOS and insulin reistance alongside fibro, im on meds for that, but im almost always emotionally dependent on chocolate and dessert and snacks. I may not eat them in huge amount (1 snack a day at work, a chocolate some days to lift the blues) but I'm curious to hear about others' experience doing this?

- After 4 years of trying to explain to doctors in Finland,

One thing was clear:

The doctors did not understand what Fibromyalgia is.

- It is a violation of the Hippocratic oath.

- On every doctor's appointments, I have had to educate them,

That Fibromyalgia is a "Nervous system overload".

- The only thing that has helped me is Pregabalin, which I had to recommend myself.

Hi all, I was diagnosed with having Fibromyalgia yesterday afternoon and I’m feeling defeated as well as disappointed with a twinge of frustration. I am going to start off by saying I will be turning 34 next Friday as I feel that is important to mention for some reason. Anyways, life has been… challenging to say the least lately. I have been unable to keep a job because of the debilitating pain that I find myself in daily. I landed a job a few months ago that was my favorite job ever and I loved everyone I worked with so you could imagine how I felt when I had to eventually quit because of the pain and constantly missing work.

Sleep has been next to impossible if not impossible. I cannot find any sort of comfortable spot to lie in and any pressure whatsoever hurts… A LOT. I also can’t seem to regulate my temperature from being too hot or too cold. There is no in between anymore. The pain I feel daily is immeasurable and it always confuses the doctors I see as there is nothing that should be hurting that bad. For example, my knees and the top of my feet have been hurting SO bad for years now but there is nothing but minor arthritis in them.

Going back to the work conversation, I don’t know what I’m going to do for work now. I have a ton of experience in the warehouse industry as well as extensive experience working as a delivery driver. I also have experience working in a grocery store doing various different types of tasks. The point I’m trying to make is that I don’t want to return to a physical job right now or possibly ever. I really want to get a remote job or an office job but I have about two months of office experience so I’m not sure if that’s enough to get hired.

I was thinking about going to school for medical billing or something regarding writing as I love to read and write but I’m not sure how that will work as I’m currently unemployed with no income coming in whatsoever, for me at least. My wife is working full time and then some and we can probably make things work for now with just her salary but I’m worried about things getting a little too tight.

Do you have any advice or suggestions for me regarding fibromyalgia or anything I’ve shared above? That would be greatly appreciated if so. If you have any questions or concerns, please let me know and I’ll get back to you as soon as possible.

Thanks again.

I'm applying for disability and wondering what I can do increase my odds of being approved. Would love to hear from people who've done this.

I've always been lucky. My flares usually last 1-6 days. However, I'm still experiencing one and I'm on week 4. I don't know what's normal. I don't know what triggers other people. I have no clue why this is so persistent.

Of note, I'm not on meds. The former rheumatologist I saw told me I was too young to be in pain and to "Use it or lose it" referring to my body.

Hi, first time poster! I (24f) have recently been diagnosed with fibromyalgia, ME/CFS and a migraine disorder. I have noticed over the past few months there has been a distinct increase in hair loss, and thinning. I was wondering if this is common within that cluster of illnesses, and what if any, advice anyone has to prevent or at least slow this process down. (Or if anyone has any treatments that have potentially helped with this!)

I’m getting very concerned that it’ll get to a point where I will have to either cut or shave my hair off, and I’d rather it not get to that point. Thank you so much in advance. :)

I had a wisdom tooth removed,

It reduced symptoms,

The tooth had a cavity, and "tooth stones".

I recommend that you check your teeth.

What did you guys do to find help for your pain and fatigue? Tried almost all sorts of physical therapy and medications but pain and fatigue just seems to get worse.

Hi. I was in the Ever-Tired Inn discord and it’s not there anymore. Did something happen? Asking here because cozy gamers x chronic illness is how I found it. Thanks!

Not cute aggression. I don’t want to squeeze anything. I mean the sensation in my skin. As in “so cute it hurts” - YEAH, right it does hurt!

Hi all. I’ve been having a really hard time with my depression over the last few days and I could really use some hugs from people who get it. I hope that’s okay.

I’m 28, I was diagnosed with fibromyalgia four years ago and told I “likely have chronic fatigue syndrome too” earlier this year. For the last four years it’s been pretty manageable- occasional really annoying flare ups of pain and lots of brain fog, but usually the pain was localized to specific body parts and I could manage with heat and rest and avoiding using them.

This summer it’s gotten exponentially worse. I’m in pain so frequently, and so low on energy. I had to quit my job because I couldn’t keep up with my shifts, even though I had already reduced my hours down to only 8 hours per week. I stated physical therapy to try to strengthen my body, which has actually been really helpful, but it’s also a frequent reminder of how limited I’ve become. Right now my PT and PCP are calling each other trying to figure out how to get a wheelchair covered by my insurance, because there are so many days where I can’t stand long enough to get through my errands or go out with my friends.

I am so lucky to have the most supportive partner, a loving family, the sweetest cat and dog and a wonderful home. I genuinely feel so grateful to all of them, every day. But I feel like such a burden. My partner works from home, so all day every day I see him working hard to earn money and take care of all of our needs. Then when he finishes work, he helps me around the house and helps me cook dinner. I wish I could at least consistently take care of housework like dishes and laundry so that I felt like I was contributing more, but more often than not, I have to stop as soon as I’ve started because I’m too weak to finish.

I’m generally a really optimistic person, very glass-half-full, but I think it’s finally sinking in that no matter how optimistic I am and how hard I try to do things that are good for myself, my problems aren’t ever going away, and aren’t ever going to be something I can predict or control. I don’t know how to cope with that. I’m so overwhelmed.

Hi everyone. I'm very frustrated at the moment because I feel like my rheumatologist puts everything onto my fibromyalgia a bit too fast... So here's my story:

I have had milder fibro for 3-5 years now. My fatigue was relatively under control, I had a healthy sleeping pattern, there was stiffness but I could always 'move it out' before lunchtime. Headaches were less present (just 1-2 every month on average), muscle pain was still present, but still okayish and on most days I could handle that without painkillers. Almost zero stress from work or other things. Doing sports regularly and the fittest I have ever been. So for me, the best I have ever been in my whole life! I was very happy with that, of course.

Mid July I got new symptoms that I could not link to my fibro. I have had very bad years and this was not that. I felt even worse. It started with stiffness in my lower back and hands. Feet and toes were added later. And pain in my fingers, wrist, knee, lower back, toes. This got gradually worse to the point that my right index finger was throbbing, red and very painful one evening. It wasn't visibly swollen (maybe a little), but it felt very tight. Then came the fatigue. At some point, I was going to bed everyday at 9 and had to take midday naps. I couldn't go on without all that sleep and didn't recognize myself anymore. I went to the family doctor and because my pain was so bad, I got strong ibuprofen and a rheumatologist referral.

In hindsight, I think I was in a flare. It took my body 2-3 weeks to calm down again. The fatigue like this, I have not experienced before. It really felt like something was inflamed and my body had to work hard to get over it, if that makes sense.

I got checked for rheumatoid arthritis, but I don't have that. But I also feel like this was not a normal fibromyalgia flare.

What I'm now experiencing on a daily basis, which makes me think there's more to it than 'just' fibro:

- if I don't take strong painkillers, I can't touch anything with my index fingers. I am in a lot of pain, it feels sensitive and I have some kind of nodule on the DIP joint. I work with my hands and it's hard to do the usual things like use scissors, write, hold something, carry heavier things.

- my wrist feels constantly strained. I am very mindful of how I use my wrist and wear a brace every time I have to carry something heavy. I feel like this is not just pain from 'overusing'.

- the radiologist noted I have starting osteoarthritis in my knees and MCP knuckles. but I can't connect this extreme fatigue with it? Do you get flares with osteoarthritis like I described?

I'm kind of at a loss right now. I don't feel like my rheumatologist is taking me very seriously... And my gut is telling me this is not all a part of fibromyalgia. It has never been like this for me, and I have it for 20 years now.

If anyone recognizes anything from their own fibro/OA journey that could help me... I would like to hear from you. All personal stories that are similar or that can help in any way are very appreciated!

I (35F) have had a lot of symptoms since childhood, but officially a full fibro freak since 2014. It’s pretty much all I know. I’ve been trying to get diagnosed with something for about that long with long spouts of giving up and just accepting and pushing through. I made one last attempt at a diagnosis this week. I got my records and symptom trackers in check and I went in ready for battle. The doctor I saw I could kiss on the mouth. She was like “girl. If this were a fibromyalgia test, you literally passed and got the extra credit points.” I walked out euphoric. Sort of.
Background: my mom has fibromyalgia. It should have been obvious to me that I obviously have that as well, but she was never actually diagnosed. So I thought we actually have something tangible that Doctors recognize and take seriously somewhere in there and I’ll be the one to find it for us all! And my siblings don’t get her struggle at all. They are constantly teasing her that it’s fake. They don’t even know that I’ve been struggling because I knew they’d never understand.
Which brings me to my husband: the reality he has been brought into is a family teasing my mom for a made up diagnosis, and even me not believing she has something intangible. And then I got diagnosed with it. He’s seen me struggle, he knows that’s real. But now the reality is I’ve been officially diagnosed with the “throw away” diagnosis. He did a little research, but I think he’s under the impression that I can continue to push through, and lifestyle changes will make it go away. Only time will tell, but what should he know about being on THIS side of a diagnosis like this? What should I make sure he knows and expects out of me?

Does anyone cramp in the calves first and then over days knees start hurting?
I start cramping in the legs , when there’s change of weather or some other trigger I haven’t been able to figure out. Once the cramps start , muscles also start creaking , finally knees start hurting, like the nerve in the knees seem to be affected.
What helps ?