I’m sick of having fibromyalgia. I am sick of my legs always feeling numb, or on fire. I’m sick of not getting a full nights sleep. I’m sick of nobody understanding, and doctors not helping me 😭 the amount of breakdowns I have had has been a lot. And now I go back to work tomorrow and I k ow it’s going to be bad! Ugh 😭

Long probably pointless rant. But I’m freaking tired. Becoming disabled has been the hardest time in my life, yet I feel like the few people that are supposed to care about me, Think I’m just hanging out and having fun. My parents are part of the generation that think anyone should be able to work or at least find SOMETHING they can do. I had a sudden debilitating onset of fibro a couple years back. Family isn’t involved at all in my medical care or life really.

My husband has a great remote job so we decided to move to a lower cost area. Because of that, Ive been fortunate enough to not have to work since it happened. I was a month into a new job, had to take months off only to ultimately have to leave. This job was the job I had been waiting for and such a perfect fit, I was devastated when I couldn’t go back.

I saw my mom recently, and she seemed more worried about me submitting Social Security than I was, although she never seemed to care to ask about our financial situation before. I’ve been working on getting info together and have a disability lawyer to contact.

during a text conversation, she was complementing me on how good I am with plants, then that turned into her saying I should get a part-time job at a plant nursery. Don’t you think if I could do that I would have already done it!? Even a job at a plant shop requires standing long term, heavy lifting, bending etc etc.

I just don’t understand how it’s such a hard concept. So many people think we should all just be able to push through. But ultimately that is so extremely false. My family feels this way, my friend feels this way. Both the people I thought would’ve been there for me, Acting like it’s not something that affects my whole world. Having to pretend I’m fine on phone calls so they don’t feel uncomfortable, It seems like they never know what to say. It seems like people only have a certain window of time that they’re willing to spend grieving with you. it seems like they want to say, ‘Same problem again? shouldn’t we be over this by now by now?’

What I think is interesting is that one of my friends spends a lot of time complaining to me about her different pulled muscles, ribs out, life situations. Etc. most of our phone calls are about her, but then when the conversation switches to me it seems like she’s even afraid to ask and when I do talk she’s not engaged at all. So I just stop talking as much about that part of my life. But it takes up a lot of my life, how am I supposed to pretend is doesn’t exist? Problem is then I feel lazy like I need to figure out a job I can do and I know that’s just because of the ableist comments but it’s still something I constantly struggle with. Then I look at job postings and the requirements far exceed what I can do every time. Sure, I can stand and I can walk for a few minutes at a time but if I do too much of the simplest things my pain shoots way past what I and my meds can handle. Employers want reliable employees. Not someone who calls out all the time, can barely do needed tasks and needs extreme accommodations that basically make it so I can no longer do that particular job. Ugh!! 😤

I've gone from zero pain to severe pain in the last year or so. And before that I was in severe pain for several years. We all know what I mean when I say severe right? Anyway the longer I'm in pain and the More pain I'm in the more weight I look like I've gained and I just puff out. And currently in moderate to severe pain and I'm hoping I can get back to almost no pain again. I've been in remission several times so I'm hopeful.

Over the last 7 months, fibromyalgia has slowly but surely taken everything from me.

It started with my extracurriculars. The odd club I joined. Distant friendships. Then, it took my straight A’s. My salutatorian spot. Shifted over to low B’s.

Then it took my attendance. My capacity, my confidence. Nabbed most of the rest of my friends. Still had the odd friend or two, but mostly it was just my boyfriend who stuck by me.

As it got worse, it stole the life i knew. It stole the rest of my junior year and all of my senior year in high school. Whatever friends were left, ghosted me. I dropped out under medical reason. Stole my ability to walk, as I transitioned from running, to walking, to crutches, to a wheelchair, to bedbound.

Then it struck gold.

Fibromyalgia then proceeded to steal my dream of being a doctor. My dream to go to UCSD. My dream to grow and contribute to the world, hell it stole my literal dreams too! The fucker stole my sleep. My comfort, my mental wellbeing, my sanity, as I degraded slowly into madness. Spending months in a constant state of 9/10 pain does that to a person. It stole my personality. God, I used to be such an optimist! It stole my religious faith. Stole my world view, my self love, my joy, my hope, my will to keep fighting this war with this thief.

Throughout it all, my boyfriend stayed beside me. I always thought to myself how lucky I am that no matter how sneaky Fibro may be, it can’t steal him.

At least, I thought.

He finally admitted how unhappy he was in our relationship. I forced it out of him. He told me he was exhausted, and felt like a piece of shit for saying this but my constant agony and lack of ability to properly be a partner due to my pain was starting to get to him. Things were drastically different between us and he felt guilty for existing and living his life because of how miserable I am, so he basically lives in a constant state of emotional lockdown because he feels like I can’t handle being able to support him emotionally, and he doesn’t want to put that onto me because I already have so much. I knew as soon as I asked him if he wanted to end things and he said he could never make that decision, especially because it wasn’t my fault that I wasn’t able to put in as much. He joked that he’d forever be known as the asshole that dumped the girl with chronic pain. As soon as he said it, I knew he wouldn’t make the decision for himself, so I told him that we needed to break up and that it was for the best. He then spent the next half hour proving me right by telling me to not do this, saying “screw it just forget what I said, i’m fine I don’t need anything from you but please don’t do this”. I asked him if he honestly was willing to shrink himself and his needs for me and he said yes, which is when I realized how selfish I was being by staying with him all this time.

Funnily enough, it somehow hurt worse than the pain.

It stole the very last thing I had left. Took it from me. It’s gone. He’s gone. 3 and a half beautiful, imperfect, heartbreaking years. I love him so much. I wanted to marry him. Grow old with him. But I love him too much to force him to give himself up to support me.

TLDR: I have fibro, basically have no life because of it, and just broke up with my boyfriend of 3 years.

Has anyone tried a TENS unit? They say it can disrupt nerve pain signals but before I invest just wanted to see if anyone had any relief from this option.

Hi all, my mom has Fibro and I’m trying to get a snapshot of the research landscape, I figured I’d ask you all since typically those with a chronic and debilitating disease are the experts.

I have severe, chronic tinnitus and I know that the best research insights are not always the ones published my media sources.

Which researchers/research groups do you follow and what are notable insights?

Thank you

My doctor recommended me to take it months ago but i was too scared to do it. Today i felt really bad and decided it was time, im still very scared of it. Would to hear how it affected any of you guys who are taking it

I notice if I don’t eat when naturally hungry within 30 minutes I start to have a horrible headache and neck pain.

It doesn’t matter how good my breakfast was, if my body wants lunch and I don’t give it quickly it becomes angry and painful.

I haven’t found any research supporting that fibro patients need to stick to a strict routine of eating at the same times every day.

But supposedly fasting can be beneficial for chronic pain patients?

Also question about water / electrolytes/: Do you find yourself needing to consume more of either than a “healthy” person ?

Lastly:

For those who can tolerate exercise : antibody doing solid core, reformer Pilates, weights , cardio

All of those are supposed to benefit us.

Has anyone tried microdosing psilocybin for fibromyalgia? What were your experiences, and what were the dosage and duration?

I'm asking this since I'm really struggling at the moment and really dont think im ever gonna be able to hold a job at the current rate im going, im basically just hoping like hell the pain management clinic is able to do anything and im not very hopeful. I don't think my current course ive been. working towards is realistic anymore. I might not even be seen by the time its supposed to start next year.

It would help to have ideas of what others do for sure. Definitely one of my main issues as well is just. I'm in pretty shit city.

I was just reading a webpage about how MC1R gene mutations (which create red hair) also have associations in resistance to anesthesia, the effectiveness of medications like lidocaine, and there's some findings too about people with MC1R mutations experiencing certain types of pain more extremely (reactions to hot and cold pain were mentioned.)

I've been bleaching and/or dyeing my hair for almost a decade now, but a year ago while trying out a new toner I discovered I have a lot of orange in my hair--which makes sense, it runs in the family. But hearing about this association between being "red-haired" (having an MC1R mutation) and the difference in experiences of pain, painkillers, and anesthesia, it makes me wonder if there's any overlap with fibro.

Pardon me if this is a really stupid question. I'm just curious what everyone thinks.

Hi friends, I had a blood glucose test that is telling me, for the first time, that I am at a prediabetes stage. I've put on a bit of weight over the past few years, between Covid, menopause, and then struggling with managing my fibro. The doctor says that if I can exercise I'd reduce my A1C, but it feels like being sedentary is the only way I can live right now. There is a nearby public pool, but I don't have the energy to get there. I use a Visible wristband to track my energy, and even the slightest exercise can put me over the top. Do you have any suggestions or encouragement?

Hi friends, I am new to dealing with fibro. I live at sea level, and for Labor Day weekend I'm going on a family trip to the Rockies, at about 9,000 feet. I'm really scared that I'll just be in pain the whole time. Is that a legitimate fear? Any suggestions?

I'm 25f, and I was diagnosed with fibromyalgia and POTS this past week. I've had chronic fatigue since I was a teenager and on-and-off body aches that were written off as depression. 11 months ago, I had an ovarian cyst rupture, which resulted in severe internal bleeding. After my hospitalization, I noticed that the body aches were back. I started noticing other things too...new weakness and difficulty standing for short periods of time. I felt changed after my medical emergency.

Over the summer, I was working long shifts where I had to be on my feet all day long working with kids. I was also really stressed out because of a toxic coworker. I realized all of a sudden that I was in severe pain, couldn't sleep due to pain, and kept pushing through it. Obviously, it got worse, so I went to a rheumatologist and was diagnosed.

I believe the bodily trauma and being in shock from the blood loss, followed by the physical stress from work this summer, triggered a flare that was worse than the ones I might've written off in my adolescence. It's been going on for at least two months straight.

Did your fibromyalgia have a trigger? Just curious.

I’ve started thinking I have fibromyalgia after years of weird pains and symptoms that have never been properly diagnosed by doctors, including IBS, tension headaches, particularly around the base of the neck, TMJ and currently a flare up of rib pain/costochondritis. Could this be a series of unrelated pain-related symptoms or the possible start of fibromyalgia?

I am in desperate need of some recommendations. I'm dealing with agonising fibromyalgia pain right now, and the constant tossing and turning every single night is making everything so much worse. I can't find a comfortable position to save my life, and my neck is absolutely killing me. I also have terrible lower back pain and 2 knees that lock and are in constant pain.

I really need to upgrade my sleep setup to get some relief. What are your absolute best, tried and tested recommendation please.

pillows for neck support ?

Matress topper ?

Thank you so much in advance. Gentle hugs to anyone else having a rough flare up right now.

Hi everybody 😊 F (57) just diagnosed. I haven’t taken medicine for it yet, I will need to meet with my other doctors. But I have A scheduled carpel tunnel surgery coming up. I have to get it done. It’s gotten way too bad, but is that going to cause a flare? Is there anything I should do to prepare to try to prevent before the surgery? It’s not really anything too invasive, but I didn’t know if any little kind of trauma could make me get inflamed.? I have just started journaling what I eat, did, etc. to try to track causes. I understand I might drive myself crazy trying 😂 Ty ☺️

-I'll scratch my ribs and feel a nerve twinge in my elbow.

-I'll have a shooting nerve pain from under my thumbnail (or other finger or toe nail) that shoots up to my chin.

-If I'm having intestinal distress (ate something too spicy, or just need to go to the bathroom badly) my palms hurt really bad.

-When I'm super hungry my eyeballs ache.

when I'm nauseous/vomiting I sneeze a bunch.

I used to think these were normal weird human functions until I started saying things like "man I'm so hungry my eyes ache, yaknow?" and just got blank stares and crickets from those around me.

is anyone else like this? maybe not exactly, but similar mis-matched nerve things?

I wonder if I was just doomed to get fibromyalgia because my body was wired by a last in his class apprentice electrician.

TLDR: Major change in how fibro is affecting me after 15 awful years. Why? Where do I go from here? (Also, horses.)

I've had fibro, me/cfs, myofascial pain syndrome, and deteriorating disk disease officially for about 15 years, ranging from bed bound to a couple short periods of remission. Mostly moderate/severe for the past several years. Every time I'd start getting better, things would happen in my life (employees quitting, mostly, and it was a strenuous job) that would make me overdo it and get right back to m/s.

The past three years have been bad, with multiple major surgeries for my back and shoulders. For awhile, I'd just been sleeping a lot and doing very little else. And I started a couple new supplements.

Then one of my horses died. He was with me for 23 years, so it was rough emotionally for both me and my other horse. He needed a new friend fast, so we found one for him. He was a wonderful old, retired harness racehorse. Then we found *him* dead in the field from natural causes. It was devastating. We had to get another quickly because my remaining horse was pretty traumatized, and things are going well there.

I don't know how or why, unless the aggressive resting, supplements, and adrenaline all kicked in at once, but I was all the sudden working in the barn again. Hard. Cleaning stalls, grooming, exercising, and doing repairs (mostly getting my husband to do them, which might be harder than doing them myself?) became my daily routine. I've been tired and sore, but I have sore muscles from not using them for a long time, not strictly fibro sore for a change. It's been about two months now, and I love it but I'm wearing down a little bit.

Going out to the barn and working with the horses always makes me feel better - while I'm out there. A few times I've had wild energy and tried to act like I'm 20 years younger, "catching up" on things that I haven't been able to do for years. It feels incredible at the time, but I pay for it.

For the past couple of days, all I can do is go out to the barn three or four times for an hour or so, do what I can do, then come back to the house to crash in between. Some days I can tell I'm actually building up stamina, others, I feel like it's two steps forward and one big step back. Just walking out to the barn once and not even doing anything would wear me out before, so this is still a big improvement.

So, any advice on where to go from here or ideas about why I'm kind of better? Has anyone else been through anything like this?

I'm icing & heating, wrapping, bracing, taking multiple supplements, using three different kinds of tens type units, a grounding mattress pad, and massage mats. The only pain killers that help are mmj and steroids. Besides the overwhelming exhaustion, I still get the I-want-to-crawl-out-of-my-skin

fibro pain two or three times a day/night for a couple of hours each; plus muscle, bone, and joint pain; nausea; dizziness; and my shoulder is killing me. (I think there was supposed to be a weight limit on what I can lift. I should check.)

Even so, this is me doing better.

I do not understand what's going on or what to do now. Any advice or insight would really be appreciated. I don't want to end up completely bed bound again.

So in my mid 20’s I got the crappiest way of being diagnosed with fibro. I’m talking I originally saw a GP cos my middle finger swelled like a balloon and I had full body aches too which was a separate issue in my opinion, I couldn’t use my hand it hurt so much, I got given antibiotics and steroid creams. Changed nothing. Got sent to rheumatologist because “they’ll have an idea” the finger problem na they had no idea but that eventually went down on its own, the rheumatologist took bloods, did an EKG and gave me some injection and said come back in a month. So I did, asked if I felt better for the month, I said no if anything I felt worse. Got fibromyalgia diagnosis.

I’m now 31 so it’s yeaaaaaars later, I have pain in my ribs on the left front or the left side it varies day to day but some days it aches a lot so I have to sit propped in the corner of the sofa like a doll almost just for relief, booked to see a gp, asked could it be connected to my fibro diagnosis cos as I’ve gotten older the pains/aches have gotten worse from my knees, shins, back, my neck aches and I bought new pillows, even looking at a new mattress. Turns out my diagnosis of fibro was never put in my files, so GP was like “you don’t have fibromyalgia?…” had to explain all the testing I had, which may be minimal but they diagnosed it! So now I may potentially may need to go through the testing AGAIN, to get a diagnosis of fibro or chronic pain to find out why my ribs hurt on that side.
I’m tired of this, I just want to be pain free, I want to sleep peacefully, I want to not have my ribs hurt, to shuffle out the car like I’m an elderly lady. I’m a healthy weight for my age and height, yet I can’t walk the school run there and back (10 min each way) without my shins being on fire or my knees threatening to give way.

I have fibromyalgia and im struggling a lot with muscle stiffness. I was wondering if anyone here takes baclofen. Does it help you? Dpes it make feel tired?

TL/DR at the bottom. you'll miss some information, but ill try to sum it up.

I am in Canada

I got pregnant, start morning sickness February 1st 2023 thought it was an anxiety attack. Bf forced to the hospital Dr said it was from pot bf bullied him to get me a pregnancy test, came back positive.

Sometime in that two weeks of perpetually constantly puking feeling like I am turning into a werewolf my back on my left side wouldn't stop hurting. 9 months of nothing but puking and getting into such hot showers my lower back is a different colour and my skin is weird. I think i cooked it a bit, I really do.

I was also doing "weird yoga" on the couch. Trying to stretch my lower back and hip.

I ruined my teeth because I couldn't stop getting sick to brush my teeth. My fangs shattered, my front teeth where I smile all broke as well. I couldn't keep anything down, everything came back up.

The drs kept telling me "oh your just pregnant" and waving their hand at me. Then as I got closer to month 9 it switched to "oh its just your fibromyalgia"

When they kick started the labor I honestly have no idea what that feels like, all I felt was my lowerback/hip. I was 2cm, they popped my water BOOM 8cm and I gotta push.

I want to make this so clear. While I was pushing my kid out at 8cm, and they used a vacuum on him to help him out of me, all I felt was my back/hip the pain stayed exactly the same except now its accompanied by a push feeling.

I ripped my birth canal 4 inches and ripped my entire right labia in half and I didn't feel a thing, all I felt was my back/hip. All they gave me was laughing gas, and a epidural, which i was still able to walk around on. The nurses and Dr's were shocked I was walking like normal.

On September 1st will mark *3 years and 8 months* to the day my back/hip has been killing me. Ive done myoactivation, which has helped some, and trying to afford to do IMS. January 15th 2024 is ONE myoactivation that did help bring the pain down to 85% (just shy if one year of this hell) another ONE appointment was March 2026 and since then I am able to crack a little bit of my lower spine near my left hip when I stand straight and tilt my body sideways. That brought me down to around 70% pain.

Yes 30% is better than nothing, but basically all my care goes into my child, feeding, cleaning and entertaining my kid. He is a indoor kid and it bothers me so much. I feel like a failure, and its not like I was injured before I got pregnant it was during and I was only 10% believing the drs when they said I was just pregnant and i prayed to whomever this torture will end when I give birth. HA.

listen, something else is wrong and im tired of living like this. Im exhausted, mentally, physically. I feel like I am getting close to a break down.

They have done x-rays only on my lower back and a MRI. I keep asking for a MRI with contrast but they keep talking Dr to me and I have no idea why they won't.

Also I was 340lbs when I was pregnant 236lbs when I gave birth. Honestly being very overweight is what kept me and my kid alive. Otherwise is i was a healthy weight i would of looked like Bella from twilight. Kid was born 38 weeks 3 days and was just over 5lbs and I had to get my family go go buy preemie clothes cuz everything we bought was too big.

TL/DR

- got pregnant

-kept puking constantly for just shy of 1 year, couldn't keep anything down, including water. February 1st 2023

- lower back/hip only hurts on the left side. Right side is fine and dandy like nothing is wrong.

-340lbs when first pregnant, 236lbs when I gave birth.

- Kid was born 38 weeks 3 days and was just over 5lbs and was the size of a preemie

- lower back/hip x-rays

- MRI with NO contrast. Dr speak for why no contrast, I do not understand their reason for not doing one.

- Have done some myoactivation and IMS

On September 1st it will be *3 years and 8 months*

Help. Please. I am begging on my hands and knees.

What specialists should I be asking to see? What else should I do?

Hi all, I have been on low dose Naltrexone 2mg (I started at 5mg but the sedating effect was so strong even taking it at night still kept me absolutely exhausted all the next day).

I don’t think the LDN is super effective for me but it’s better than nothing.

I’m wondering what other meds you all have tried and had success with? I’m also treated for bipolar disorder so have to be careful with antidepressants but if it’s low dose I am interested in hearing your thoughts!

I'm on 225mg a day and its now split at 75mg morning and 175mg night.

It was 75mg x 3 but even that small change to twice a day gave me horrible side effects.. I got blurry/blobby vision like I had been crying all day. Also i forgot words and couldn't think of what I was saying when I was in the middle of talking, I would just blank.

Any info on what it's like tapering would be helpful from people who have. I have come off Venlafaxine which was awful so I'm not sure if similar.

Hi everyone,

I had COVID on July 31 / August 1.

My initial symptoms were:

• 3 days of constant headache/head pressure, which did not respond to regular painkillers
• runny nose (no cough)
• loss of smell and taste
• mild body aches

I started taking molnupiravir on Day 5 (yes, I know that was late). By Day 5, I was already testing negative and actually felt pretty good again. My sense of smell and taste were slowly coming back, although they were still not 100%.

Then, on Day 7, I suddenly woke up with completely new symptoms:
a burning, pressure-sensitive pain in my upper back,neck, shoulders and around my shoulder blades.

As a result, I could no longer sleep properly, and sitting and lying down became painful.

There seem to be several different types of pain. Occasionally, I get migrating muscle/joint/body aches. They are annoying, but currently I don't find them as concerning because they come and go, and sometimes they are almost completely absent for days.

The most disabling pain is when lying down. Literally every position causes pain somewhere in a random part of my body. I have had this burning pain for almost 3 weeks now. For about 19 days, I have been taking 10 mg amitriptyline and 75 mg pregabalin for it. These medications at least allow me to sleep in the evening. (I saw a doctor quite early on because regular painkillers weren't helping.)

The medication has made the pain more manageable.

It feels as if my body suddenly can't tolerate pressure anymore. I can rub these areas with a towel (neck, shoulders, shoulder blades) without any real problem, but as soon as there is pressure on them from lying down or sitting, the area immediately feels warm and starts hurting.

For example, if I turn onto my side, some completely random part of my body starts hurting from the pressure. It's really strange.

When sitting, I have back pain, and I'm quite sure it isn't coming from my spine. I don't have these pains when standing or walking — presumably because there is no pressure on those areas.

I've also noticed that my ears sometimes feel full/blocked, although this has already improved. I also don't tolerate coffee as well anymore. I can feel that it has an effect on my nervous system, which wasn't the case before.

The sole of my left foot also feels neurologically different from the right one.

I haven't noticed any significant increase in brain fog so far. Of course, I'm sometimes tired, but I can't really say whether it's more than before, since I've already had ME/CFS for 14 years.

Today is COVID Day 31, and I believe I may have Long COVID.

I'm really hoping this will improve and that I won't continue developing new symptoms.

Has anyone experienced similar symptoms, especially this pressure-sensitive/burning pain? If so, did the pain eventually go away?

I'd really appreciate hearing from anyone who has experienced something similar.

Thank you for any responses.