Hello,

I have had pain in my body for a long while now and though I was diagnosed with fibromyalgia over 10 years ago I feel like something else is the problem. I have a small curve in my spine which I know cause some pain but I have also notice over the years that most of my pain is only on my right side, my allergies are almost always on my right side hearing and vertigo is almost always on my right side. What could it be that it is all happening to my right side of my body?

#fibromyalgia #pain #health

I went to a rheumatologist because my dad was recently diagnosed with lupus and I wanted to see if I had it too. I already have celiac disease and alopecia areata so I’m not new to autoimmune diseases. I was shocked and still a little confused when the doctor diagnosed me with fibromyalgia, mostly because I was only seeing her to rule out lupus. She gave me a brief explanation of it and some treatments but since I was shocked I didn’t ask the right questions. I’m reading more about it now and I can agree that I might have it but I think I have a mild form of it compared to a lot of others. I struggle with brain fog almost everyday. My body is always in pain but I go to physical therapy and I do think there are reasonable explanations for the pain. I am constantly tired and have had periods in my life where daily life is just freakin hard. I struggle with depression and anxiety and have always explained to my therapist that I am exhausted. Even if I wanted to live my life to the fullest, I just can’t. I’m 29 and shouldn’t be feeling this exhausted. Anyway, the diagnosis of bipolar disorder has been thrown around and I’ve never agreed with it. They think days that I have energy are my “hypnomanic days” and periods where I can’t function as depression but they’ve never understood that it’s my energy levels, not so much my mood. After this diagnosis, I’m wondering if those are what would be considered flare ups from fibromyalgia. I’m a little skeptical about the diagnosis because of how it came about but am continuing to find symptoms that match up with what I’ve been experiencing throughout my adult life. I still don’t know how to feel about it. Some moments I am grateful for finally feeling validated that my exhaustion is not something I can control but on the other hand I feel skeptical. I had no idea what fibromyalgia was before the diagnosis. Anyone else experience this feeling?

After my pain doctor cleared me for everything he said I was good to start getting pain blocks in my back so then insurance can clear me for occipital nerve blocks. I had done this 5 years ago on my neck and it worked amazing. It has just started to Wear off. Now I am special when it comes to that. Usually it lasts 1-2 years, I got lucky. Anyways when my pain Dr told me it was offered with or without sedation I was surprised! First of all I was not sedated when the did it last time. And second of all how can you be sedated when they need you to feel?

ANYWAYS SO I chose NOT to be sedated STUPID choice. I feel like the Dr did not even care. It was all of 5 seconds between the numbing and the so call lidocaine mix they put in my back. He definitely hit a nerve and my back has not been the same since

F (30) experienced bodily painful sensations since I was 20 that really freaked me out. I’ve had terrible period pains since the age of 10, where I had to be bedridden days at a time. Which completely ruined my education, but I was just screamed at for being lazy by my narcissistic mother; who never seemed to care that much about me.

I got involved involuntarily with psychiatry (by my mothers means) who completely disregarded my pains, and said they’re were part of a psychiatric diagnosis. That they’re were delusions. I had explained my pains felt like “radio waves” shooting into my body at the time, because I couldn’t really explain or properly tell them about the tingling, vibrating feeling in my hands and feet; which was getting incredibly worse. They told me I was psychotic for having these experiences. I even got raped while in involuntary hold! Nobody took me seriously. I was psychotic for believing I was raped by another patient too. It was overall a really terrible and traumatic experience, which scared me away from any health care professionals for years to come.

I have so much trauma, I’ve finally reported the incident to the police, and I’ve gone NC with abusive narcissistic family members.

For the past two years I’ve experienced what I believe is flare ups, where the right side of my neck and back will stiffen up, which will result in terrible, hour long pains with migraines.

It’s been coming back recently like never before, I had to go to the hospital where I got morphine, which took the worst of it. Then I got to my doctor this Wednesday who finally diagnosed me with fibromyalgia. I’ve otherwise thought it was endometriosis for years.

I’m both sad, relieved and furious. I wonder what my life would have looked like if I was just taken seriously in my pains when I was 20. The last 10 years has been hell with getting misdiagnosed, the pain worsening, and multiple other problems arising. Which really scared me away from any doctors, what if they disregarded me again. But I finally decided to speak up and got taken seriously, thankfully.

I can’t believe how easily my pains were disregarded as some psychological issue back when I was 20. I feel like calling up the doctors from back then and be like “I told you so”.

So frustrating. Just needed to vent. Hopefully I can finally receive proper support and treatment now.

Hey yall. Im 20 years old and AFAB and while i was out at a theater tonight, i startes experiencing quick, sharp pain in the left side of my chest where my heart is. It's been coming and going for about an hour or two and sometimes it turns into a weird burning sensation. I think it's in my chest and not my heart bc when i sit down, the pain worsens but i want to know if y'all have felt this before. Google is just making my anxiety worse, which is making the pain worse. Thank yall.

Edit: i also was a little short of breath and lightheaded, but mostly bc i was anxious. Its really hard to tell what's anxiety, what is my fibro, and what is an actual medical emergency

If anyone in here used to work a physically demanding job prior to their diagnosis leading them to be unable to perform that job - how did you start over with your career? How did you go about thinking about your next steps? I worked in landscaping and ran 3 greenhouses, and while I’m technically going back to work on Monday after a medical leave, I know I’m going to have to leave this job.

I’m trying for the plan for the worst, hope for the best route - going back to school to try and get a degree that can lead me to a job where I can both work from home and make a living. This is a new diagnosis for me, but I’ve been in consistent pain since May. It came so suddenly and I’ve had two distinct flares that left me so scared to get up that I’d cry in my bed over the thought of moving bringing me more pain. I know I need to find a way to make a living that can accommodate for flaring and the aids I’ve started using in the last couple of months.

But I don’t want to. I love my job. I worked hard earning a managerial position, I was a year away from taking over the greenhouses (my boss is retiring and has been training me up for two years just for that). I’ve gotten specific licenses, taken courses, gone to conferences, toured other production greenhouses. I worked 6 days a week and genuinely loved it. It had decent pay and benefits.

How do you accept that you have to step away from the livelihood that you loved and expected would sustain you for years to come? How do you get over that grief to move forwards? How do you even want to move forwards?

How many men here have Fibromyalgia?

Fibro makes me sleepy during the day, which is unfortunate because i used to sub and watch kids for a living. While my medication takes care of the pain aspect, it does nothing for my fatigue. I unfortunately, i was fired for falling asleep on the job. My psychiatrist made a note explaining the link between fibromyalgia and the daytime sleepiness, and after a conversation with HR, I still lost my job but now they understand. I am fucked because I just moved to a new spot and am no longer homeless, but if I dont get a new job by January, I may be homeless again. Wondering if anyone else has dealt with this issue.

Airports fine because I got assistance but absolutely everything else has been torture.

As much as I adore my family and friends I just want to get back home, hug my cat and cry for a few hours.

Everyone goes out of their way to see us and plan find these events I can’t miss and everything is a surprise.

Don’t get me wrong I’m incredibly grateful for having these friends and family, but no matter how hard I try to explain I can’t keep up on vacation anymore, everything is exhausting I dealing really bad with the cold and on a very painful period to add to it all.

I tried explaining I can’t make plans late at night or do long drives or walks, but everyone plans surprises and I’m not up for them. I need to be prepared, to know how many hours I’ll spend outside, to make sure I have comfortable and warm garments.

I feel very alone and like I’m ruining this for everyone else involved. Specially my partner who works very hard to keep up with all my needs and he only gets to come home twice a year.

for those who are taking LDN, what was your starting dose?

Currently on 150mg 2x a day. Anyone notice benefits of taking is 3x a day instead of 2x?

I just spent the week with a 4yo in my family that I don’t get to see in person very often, and it was challenging sometimes to explain why some days I’m doing ok and can do all the activities we want, but sometimes I’m not feeling well and can’t play, even though I look the same and nothing happened. The best I could come up with is “my body needs a little extra help sometimes” and saying it’s kind of like being allergic to things which they somewhat understand. I’d like to be able to communicate the situation more clearly because (a) I want them to grow up with this idea as normal and not something to hide, and (b) they’re keen to know the why of everything and guaranteed to keep asking questions lol. But they’re also quite sensitive so I don’t want to scare them by introducing concepts like “being sick forever” or “a sick you can’t get better from” the wrong way, because obviously that could go very poorly.

They tend to absorb information the best from illustrated kids books, and I’m sure many people in this group have been in similar situations, so I was hoping someone might have a recommendation for a book to get them? Most of the ones I’ve found searching on my own seem to be about a sick mom, and I’d reallyyy like to avoid that if possible, because they’re also in a phase of taking things very literally so I don’t think they’d be able to get past the mom aspect and comprehend the broader concept. TIA!

I understand that Tinnitus can be a common comorbidity of Fibromyalgia.

However there is some inspiring stuff happening with Tinnitus Research.

This summer a new organisation that had been in the works for a year, came to fruition!

Meet Tinnitus Quest: https://youtu.be/Mm68m08O_Wc?si=qYRgCTehljwpqD2y

https://tinnitusquest.com/

A new, research focused charity, where the best researchers work in collaboration with patients, and young investigators pitch new ideas, hoping to be funded. It's been heartening to see the donations coming in, big and small. All the board give their time for free, and the diversity of skillsets are huge!

Sometimes different fields of expertise working together, can improve lives.

Stay Strong

Hey guys, I just need a little advice or positivity if no advice is available.

The ups and downs of Fibro and POTS is a cycle that is hurting my mental health more than anything. Sleeping, being awake, walking, drinking water; everything triggers my symptoms.

I can’t even eat without it triggering my POTS. I’ve been to the ER multiple times when I lose vision or can’t stop the muscle tremors and can’t handle someone asking if it’s a panic attack anymore.

I just want to have some sort of semblance of control of my body and it’s breaking me down that I don’t.

I don’t want to cry after every meal. I don’t want to be scared to eat in public. I don’t want to hide my disorders from my friends. I don’t want these disorders. I don’t want to resent my body anymore.

I often have ulcers on my tongue, like mostly around the edges, but all around the edges. And it hurts like crazy. Don’t understand how fibromyalgia is in play here. Has this happened to anyone else? If yes, did you recognize any triggers? What do you do to cure them? TIA!

I was diagnosed with fibro a few days ago by a Rheumatologist. I suspected I had it so it wasn't a surprise at all. Since I got diagnosed I am really feeling every symptom I have had. It feels like my brain has said "Oh so it has all been real" and is now letting me intensely feel everything all at once. Has anyone experienced this? Is it a known phenomenon? Is it coincidence? Thanks in advance.

I’m looking for a great pain management doctor/provider in the Phoenix area that accepts Mercy Care AHCCCS plan. I need someone with a helpful and non-judgmental attitude to treat my chronic pain associated with fibromyalgia. I appreciate any suggestions. Thank you!

I am going on 4+ weeks of body aches, on and off sharp pains, sometimes a burning sensation. It’s in my arms, lower back, butt, legs, knees, and sometimes I get a vagina pain. My hands sometimes feel numbness or weak. I get these waves of nausea. Sometimes I feel so sick I have to crawl into bed - I feel like I have the flu (which I read was a common feeling).

A couple of things to note, I had COVID for the first time back in July. It took me weeks to shake. The past couple of months have been super stressful, and about 30 days ago I stopped breast feeding. I’m 37 years old.

I went to the doctors 2 weeks ago and they did bloodwork and urinalysis. Everything came back pretty much normal except I had some abnormalities in my urine that indicated I had some type of infection. I’ve been on antibiotics now for almost 5 days and I still feel awful.

I’m going back to the doctors next week, but what’s the next step. Just say hey, I think I have Fibromyalgia, let’s rule some other things out?

I’m very scared. Health stuff scares the shit out of me. So I know my anxiety isn’t making my pain any better. Everyone I’ve talked to has said my body is on overdrive right now due to the last couple of months being super stressful. So I’m trying not get into my head too much.

Any help or guidance is appreciated. Thank you so much for reading.

years ago i read somewhere that people who experience F share common personality traits. I remember how the article talked about how women for instance who suffer from it, are closed off and self sufficient and that the constant one-against the world-battle leads to the symptoms we all so patiently endure.

I think I fall into the category and I feel like I am like a soldier who is on duty for a decade without leave. I have always been stoic without realizing it, I do dad jokes while being a lady in my mid-twenties, i am basically a 80 year old veteran in my mind and I feel like a mind shift away from that could be the key to recovery.

I used to want to know everything about F and the way the nerves don't work right or are damaged, but I have doubts about it all, maybe I just experience it, but maybe it is psychosomatic.

And I think to myself, maybe I hold tension in my mind and my body mimics it. I have tried to accept the things that have happened to me when i was a child that made me so alert, that gave me a feeling of a permament and unresolvable guilt (to exist?) and in battle mode and let it all wash over me and then just let it flow away. And then to learn to trust and to reach out and to feel connected, to be part of something that works and that is peaceful and friendly, especially the physical world, the wind is ok, the water is ok, the sun is ok, and I am a part of the universe, wanted and living.

Also I wear an amber stone and it does help, and i am not even ashamed anymore, I believe in stones, at least in that one, because i can feel it (i can feel EVERYTHING TOO MUCH)

ok ramble over

Hey all. I was officially diagnosed with fibromyalgia in February, 2024. Looking back, I've definitely had many probable related symptoms for 20 years (IBS, Raynaud's, adenomyosis, nerve pain +). When I finally sought treatment for PTSD/anxiety/depression last year, my doc recommended EMDR, which was her specialty. Months of prep work led up to the first EMDR session...which didn't go well. A few weeks later she convinced me to try a 2nd time and it was just as bad/worse. She recommended not moving forward with EMDR because I may have more attachment/early trauma issues than I thought. After the 2nd EMDR session is when my pain really kicked in. My anxiety & depression worsened, add in the aches, pains, tiredness and restless legs...what a mess. I found a wonderful rheumatologist (after some not so great ones) and am working on finding what gives me relief and what triggers a flare. Just curious if anyone else had a negative exprerience with EMDR? Are there any other trauma treatments that worked for you? Thanks in advance.

Just wanted to share something thats been helping me out lately. I work at a popular hardware chain and when I get my fibro flareups its tough because half my job is just moving stuff around and the pain is this dull annoying thing that just doesnt quit. not life ruining, but enough to make the day drag on.

So yesterday there was this event in the plaza where i work hosted by the local radio station. they were handing out these small cbd lotion packets from a company called Workmans Relief. I'm not into recreational drugs or anything but it's just lotion? I don't think lotion can get you high. I put some on my hands and i swear not 15 minutes later they started feeling better.

I was so impressed I went back and stole a few more packets lol. obviously this isnt a cure or anything but its helped me get through the day.  I never considered CBD lotion before and wonder if you guys have seen similar results? This elbow grease stuff is great but Im now wondering what makes it work so good?

Hi everyone! Just diagnosed this year and although most of my symptoms come and go (and migrate around my body), I’ve been having really bad restless leg on my left leg. It’s been really a bother this past month. Like everyday. Before this month, it was just on and off. Anyone else experience this? It feels like extreme shin splints.

What is it like for you when you’re NOT in a flare?

• No pain at all?
• Pain but less intense?
• Pain but at least you can get out of bed?

We don’t really have a shared understanding of some many parts of fibro, and ideas like pain are all relative. Just wondering how people define flare/no flare.

My shoulders crack like crazy everytime i move them. I think that + pain is whats making me avoid moving them too much. Do any of you also have or had this?? Howd you fix it?? Is it even fixable??

Extra: Im not intentionaly trying to crack them. They just do from any movement (like remembering to sit up straight, looking to the side to see someone or raising my hand in class).

My husband and I are currently trying to conceive, but I'm worried about my Dr taking me off my medicines. I'm currently taking lyrica, tizanidine (muscle relaxer), and lunesta. The tizanidine I can do without, but the lyrica and lunesta I definitely can not. I'm supposed to take 150mg of lyrica 3x a day but for the past few months I've cut back a lot and only take it before bed or when I'm having extreme pain. The lunesta I can go without every other night, but more than one night without sleep and I have no brain power to do anything other than my daily chores around the house. Has anyone taken lyrica and/or Ambien/lunesta throughout their pregnancy and baby was fine? I had no insurance before my first pregnancy so I was not being treated for my fibro, but now that I've had 3 years of treatment that actually works, I'm so scared of having that treatment taken away just to have a baby. I don't think I can get through another pregnancy of no sleep and constant level 10 pain.

Title says it all. Its my birthday tomorrow and I have invited á handfull of people. But the weather changes here have been so drastic that I am really flairing and just want to lay in bed all day. Its cold out and I just want to be in where its warm and cozy.

Please excuse the “real” pain thing I had no idea how else to phrase this. I’m just curious to know about other peoples experience with this. I’ve been diagnosed with fibromyalgia for 3 years and there have been one or two times that I’ve confused something serious for fibro pain. For example, I had my arm on the stove and was burning myself for about 15 seconds before realizing it probably wasn’t fibromyalgia and realizing my arm was being burned. Then later that night I forgot that I burned my arm and caught myself rubbing the burn and making it worse bc I once again thought it was fibromyalgia pain. I get concerned that if something is really wrong I won’t know. What is y’all’s experience with this and when do you make the decision to get something checked out vs attributing it to fibro pain?

Hey is anyone taking and having success with any supplements? Heard collagen can be helpful? Iron? Magnesium? Thanks

Okay so I'm wondering what sort of possible otc pain relief is out there that maybe I haven't tried yet. I can't take ibuprofen due to being on Lithium for my bipolar disorder. Tylenol and Aleve don't do a damn thing. I'm on Lyrica and Flexiril yet I still feel like I'm stuck in a hydrolic press. tia.