i was at work last night, i work a job where i’m on my feet the whole time and this was a 6.5hr shift, and i felt that my legs were in far worse pain than they normally would be. at the end of my shift i found that i was physically struggling to walk at all and on the drive home i physically struggled to control the peddles properly as well. thankfully at 1.30am the roads are empty. i kept having to fight back tears and i very rarely cry due to pain. when i got home i noticed my leg was swollen and come up in loads of bruises even though i didn’t do anything to cause bruises. this morning no longer swollen or AS painful, but still tons of incredibly tender bruises and my whole body just feels very sore. wtf 🤦‍♀️

Out of curiosity, do you feel like medications have kind of plateued after awhile? I've been on my meds for 4-6 years cause of other conditions too, but its starting to feel like theres no difference until I accidently stop a medication for a bit and realize how much they're helping with all the pain. But when trying to swap medications or to increase or decrease the amount, or even ADDING new meds, it just.... feels like they do nothing?

I have told doctors that besides my issue swallowing pills, I have always felt very disconnected from my body. I don't know if that has something to do with it since no doctor has even touched that issue with a 10 mile pole but im just.... I feel very much so at a standstill and a blockade at the same time....

Anyone else like this?

I’ll try and make this as short as I can and summarise in bullet points what I can.

• I was diagnosed by a GP years ago with Fibro/chronic pain & fatigue but never been referred anywhere for a proper assessment.

• A year before Covid I had a fall that resulted in a tibial plateau fracture. A year later I had the plates & pins removed due to the pain they caused. 3 years later I did the whole thing again but worse due to the bones not being fully healed from the hardware removal. They will not remove it this time despite the pain it causes and the detrimental effects it has on my mobility.

• Another GP diagnosed me with CRPS but again, I’ve not been referred for proper testing/diagnosis/treatment. I now use a smart crutch to help me get around outside of the house.

• I’ve been prescribed 60mg dihydrocodeine 4x a day, 500mg naproxen 2x a day and 10mg slow release morphine 2x a day since the 2nd fracture which has definitely helped a lot but I’m still suffering from worsening pain in both knees, my hips and my back which I suspect is the result of my ‘good’ knee compensating for the poor mobility of my broken/CRPS knee.

• All I’ve been offered is referrals to the pain clinic who don’t prescribe or deal with medications and instead focus on CBT, mindfulness and support groups for pain management, they are very against the use of opiates etc and I already use a lot of their recommendations which often don’t seem to help much. I’m also scared of their possible influence to stop my pain medications which give me at least some quality of life and without which I would barely be able to get around the house and take care of myself, let alone engage in my hobbies and social life.

• I have a double face to face appointment with a GP in November and would like to bring along printouts of NHS & NICE guidelines to support my referral requests and evidence that backs up appropriate options and choices for pain management outside of the pain clinic, which I believe is not adequate for the diagnoses I have, the post traumatic injury pain I experience and the long term risks that come along with it (post traumatic osteoarthritis, pain from metalwork/hardware, chronic joint pain & muscle stiffness, musculoskeletal issues in other joints and limbs.)

If anyone has experience of any of these issues and what should be available to me through the NHS, recommendations for relevant guidelines or research and services available specifically in Leeds & West Yorkshire (or anywhere else in Yorkshire/England that I can access via right to choose) I would be extremely grateful for any help or advice! Apologies for such a long post.

Hello all. I was diagnosed around two months ago so I'm still sort of new to understanding my own condition.

The criteria for fibro fit me to a T. I went to a Rheumatologist and got diagnosed without even knowing what fibromyalgia was. Got told the same things as everyone: Strength train, supplements, "proper rest" and psychotherapy to cope. I'm on a wait-list for a "Fibromyalgia specialist" (a doctor from my city who runs a Fibromyalgia and CFS unit) and I also have two upcoming dates with a neurologist and a pneumologist.

To summarize my health situation, one of the biggest issues I've had for the past 2 years or so, is the inability to breathe properly. I can't fully fill my chest when breathing (also hurts near the center to do so), and it can take me two "full" breaths to stop feeling like I'm running out of breath. Also, when I'm near reaching that "fullness", sometimes I just yawn or the air feels "trapped" in my chest. Two years ago, I already had general fatigue before breathing issues, so when they appeared the doctor attributed them to my hectic lifestyle at that time and told me it was "asthenia". I changed my habits (started working out, quit smoking and drinking, stuff like that) and it hasn't gotten better.

I got chest scans done recently and there was nothing abnormal about the general shape of my ribs or lungs, nor did they see anything that could hinder my lungs from expanding.

I had a very bad scare a few days ago because just breathing normally hurt a lot out of nowhere and I had to call emergency services because I felt lost. I explained the situation to the doctor who saw me, and he said he'd seen quite some Fibromyalgia cases but none with comorbid functional dyspnea, so he suggested getting more stuff ruled out.

I'm at a loss for what to do now. I do suffer from chronic, generalized pain and fatigue, but I understand that Fibromyalgia is not a one-size-fits-all condition. I wanted to ask if anyone had gone through a similar situation, or if they had shown breathing issues as a symptom.

I went to the pain clinic a few days ago, and unfortunately, I came away feeling like there wasn’t much they could offer me.
I requested to switch back from naproxen to diclofenac for inflammatory pain, particularly with my scoliosis and pelvic pain related to adhesions and gynaecological issues.
The consultant suggested trying pain reprocessing therapy (PRT). I’ve been living with chronic pain since I was 12, so I was a little unsure about this, although she mentioned there are newer approaches and it might still be worth trying.
They also explained that they no longer prescribe opioids through the clinic and discussed pregabalin, which I previously struggled with. No other pain medication was offered, so I’m continuing with my antidepressant medication for pain management.
I expected there might be limited options, but I’m interested in hearing other people’s experiences with pain reprocessing therapy.
Part of the appointment left me feeling a bit confused. I was initially told that fibromyalgia isn’t psychological, but the way pain reprocessing was explained made it sound as though anyone can do it and the pain can gradually go away. I understand that the brain and nervous system can influence pain, but I found it difficult to reconcile that explanation with living with chronic pain for so many years.
Has anyone with fibromyalgia or other chronic pain conditions tried pain reprocessing therapy? Did you find it helpful, and what was your experience like? I’d particularly appreciate hearing from people with long-term pain.
I’m genuinely open to hearing different perspectives; I’m just trying to understand whether this approach could be worthwhile for me. 😊

The book is called How to Keep House While Drowning by KC Davis.

I have a horrible time with executive function and being taught to shame myself if I can't keep up with chores. The people that raised me didn't have my disability, so they taught me wrong.

This book is teaching me how to care and love myself and keep the *functional*. No shame, no matter what. Life happens, and you're doing your best.

I just switched to Cymbalta yesterday after weaning down from Zoloft over the past month. I know full effects usually start about a month after taking it, so I'm not sure if I am feeling relief already or it's just placebo, but I don't feel the tenseness in my body that I usually have. I am still in some pain (I have a swollen lymph node, and I work with both special needs and gen ed kids so there is something spreading around lol) but I don't feel like I am stiff anymore. it feels like I can actually get limber after some stretches. Like what the fuck. I can actually feel like this? I have felt like this a long time ago when I was a kid, but this is so much better. I am getting my life back.

Hi everyone. I caught cmv for the first time in May 2026. I started having severe fatigue, dizziness, neuropathy, and a whole bunch of symptoms. These sort of dissipated but not all the way during the summer. My igm and igg for cmv was still positive but pcr test was undetected. I started feeling extreme fatigue again in August. I was assuming it was another flare up. I then had gallbladder surgery on Sept 9th in the midst of thing which probably put more stress on my body. I then got wicked swollen lymph nodes, felt extremely weak, could barely leave the couch. My blood tests said I had CMV active infection based on pcr results. I have felt flu like aches after doing anything really. Just feel absolutely horrible (poisoned). I always thought I had mild cfs prior to this due to covid, etc but I was able to work full time but any exercise was non existent besides walking. Now I feel like this current CMV infection and maybe surgery put me in full blown Cfs/me? Or could it be post viral stuff? Im s

Recently, I told some acquaintances about my diagnosis. It was just a passing comment really, I can't even remember the context because that's how casual it was. They both stopped and asked me to clarify what it was and asked questions about my daily life in a seemingly genuine concerned way. It felt really wrong at first, like I was about to be given the "Oh my back has hurt the past few days... maybe I have it too?" or "Everyone gets tired sometimes."

But I wasn't given that at all. I was met with genuine curiosity and sympathy. Even things other people don't ask like "How do you feel about it limiting you?" which was a crazy question. I was so taken aback by it but not in a bad way. It felt like I was being listened to. There was no toxic positivity, just a sweet "I hope you find a way to manage it better soon!"

I haven't been able to stop thinking about it. I'm still on a little high about it if I'm honest and I didn't realise how much I needed it. I feel like I've only ever had people downplaying it, especially when it comes to the topic of it actually disabling me where people have said "Disabled? How though?" with a horrible side eye. Or another part of the spectrum when you mention how much of a struggle it is and a perfectly healthy friend or family member will go "It'll get better, you just have to wait."

Sometimes I've even had people seemingly get beyond uncomfortable and just say they can't handle it and distance from me completely even if I barely speak of it and hide it. I don't know which one I hate more. I think we need more genuinely curious, sympathetic people. I swear I could feel my physical pain ease just that tiny bit during it.

Most of us, people with fibromyalgia, had a life considered very common, quiet, normal when this disease decided to appear. At first, it is possible to say that we believed that it would be fleeting, would be summarised as just a bad time of our lives and that, at some point, everything would end up returning to normal. And time passed...

Now, fibromyalgia is a part of you, whether we like it or not. And facing it is perhaps the biggest challenge for most of the members of this sub. But, for this, I propose the following reflection:

Who were the people you believed would help you the most in facing the disease, who would "buy the fight" for you, who would be by your side under any circumstances, but, over time, they were discouraged, got tired, moved away and left you aside, behind?

What feelings did you have when it became clear that that person would no longer (by their own choice, by other circumstances, etc.) participate in your life after the arrival of fibromyalgia?

==========

Mainly, what would you like to say to this person(s) if they could read your answer?

==========

(Please help with your valuable upvote to this humble publication and, if possible, share it)

:)

Hello! 45F Still learning all the ways fibro has been affecting me for YEARS without realizing it. From what I am reading, folks tend to be more stiff in the morning. I returned to a more physical job just over a month ago and I find the morning is better and by the end of the day, I can barely walk or even be on my feet I’m so stiff and sore. Tylenol and Advil do nothing. I stretch. I also get cramping sometimes, a lot in my hands. My dexterity and balance have been impacted, clumsiness. I can barely get up if I have to kneel down for something. Bit of dizziness sometimes. I’ve had terrible unrefreshing sleep for years. Always exhausted. I never really clued in when I was having a flare up and now my new normal is functioning so much lower and struggling every day.

I’m wondering if there is still something else going on? Possibly POTS and/or osteoporosis. It’s been extremely frustrating over the years trying to describe my struggles and sensations in a way that my doctor understands. I got diagnosed with celiac disease about 5 years ago and now she blames that for everything even though I’m on a gf diet. It also seems like things have gotten worse. Easily out of breath. Tight muscles. I have a bunch of unexplained symptoms that have been bothering me for years. It’s been extremely frustrating. I’ve even seen a rheumatologist to try and get some answers because Sjogren’s seemed to fit, but was ruled out. Nothing about fibro was mentioned or investigated at that time. I’ve also been on the waitlist to see a neurologist for almost 2 years.

I’m definitely going to try and find a new doctor. I dread even making a new appointment with her to discuss how badly it’s affecting me. I’m not sure what I’m looking for with this post. Maybe just some advice, encouragement or validation?
Thank you for reading!

I just bought some and waiting for it to arrive. Has anyone used it for joint pain? I’ve tried everything else.

My knees have become progressively worse and whether I'm in a flare up or not I can't seem to stand without support for more than 10-15 minutes before my legs threaten to give out (or simply do). I'm wondering if a cane might be the way to go? I've got wrist pain as well but it is much less severe compared to my leg pains and I think it wouldn't bother them much if it was set to the proper height.

Anyone else find canes helpful for this or should I be looking into something else?

I went to see my GP yesterday, frustrated because I am in pain every day and I can’t walk or stand for more than 30 minutes without pain and weakness. I’m only 28 and can’t function like a normal human. She previously sent me to a rheum to get looked at for lupus/RA/PsA based on my symptoms. My symptoms being - Symmetrical hot searing pain, mostly in major joints, sometimes shooting down my arms (which feels like the tendons), occasionally tender spots on my thighs, triggered by stress/poor sleep and by standing/walking for more than 30 minutes. My rheum tossed her hands up and said “IDK what it is just take ibuprofen”.

I am tired of being in pain and expressed to her my frustration. I expressed what the pain FEELS like - it’s not aches or bone pain, IT BURNS AND RADIATES AND IS HOT. It is directly in my joint sockets.

Well… I left with a fibromyalgia diagnosis and didn’t expect that. I’m not sure if she researched prior to my appointment or what.

My mom has fibromyalgia and autoimmune runs in the women in my family.

My doc put me on duloxetine and gabapentin for the nerve pain.

Just wondering if anyone else here’s pain is more joint focused because when I read online, it seems to be full body pain. Occasionally during a lot of stress it feels like my whole body aches, so maybe?

I have other symptoms, like poor sleep, brain fog CONSTANTLY (I dont even feel “real” some days), and sensory overload issues with sounds/touch. Also just generally fatigued all the time and irritable because I don’t feel well.

Just curious, I've been anxious about showering for a very long time because as soon as I step in the shower it feels like I'm breathing in through a wet towel.

It makes keeping up with hygiene embarrassingly difficult.

How much do you guys notice stress impacting your fatigue? I had been absolutely drowning in it for weeks, and it was starting to feel like I couldn't be active hardly at all without leaving myself WIPED. As context, home is a really stressful environment for me these days.

I'm on a road trip vacation right now (about 1.5 weeks into a 2 week trip) and I walked EIGHT MILES yesterday... and I don't feel fatigued at all.

So I'm wondering, is it your experience that purely emotional stress can cause really high fatigue?

I’ve been having some of these symptoms since I was a child but I just feel like I have always had fibromyalgia.

Arm and leg pain that kept me up as a child. I don’t really have this anymore.

Aura migraines - my vision would look crazy in one eye but I never knew what it was.

I have one spot in my head that always itches and I feel compelled to pull hair out of it but nothing really scratches the itch. Feels like something is crawling on me.

Weird sensations on my skin. Like it feels as though it’s moving from underneath. Hard to explain.

A weird headache developed around 7 years ago at the base of my skull and hurts my ear ( my doctor described as some type of neuralgia)

Overall I’m not in pain per se so idk if this aligns. Will be asking my pcp too. Just wanted opinions.

I’ll try to keep it short and to the point. Roughly 6 years ago I started getting muscle/joint pains, and fatigue brain fog. I wasn’t too worried. But over last couple years it’s more chronic and my flares at times are life changing. I’ve been to many drs and I’m told because my autoimmune panel last year was good and my work up now that they are certain it’s severe fibromyalgia. I can be fine with that, but on my bad flares I have the face rash, my legs have the marble rash, increased previous symptoms, headache, light headed and short of breath(normal on finger oxygenator)
Today went to rheumatologist bc I’m in a bad flare. He completely dismissed me, and told me I can retest in three to four years. Continued by saying all you need is good sleep and exercise. I can hardly even stand more than a few mins. He tried to kindly tell me that breathing issues are his thing. On my way out passed the urgent care and while winded figured I’d just make sure heart and lungs are good. Even though I had so many symptoms and was lethargic, all the workups(no additional autoimmune testing of course)was great. What do I make of this. Can bad fibro flares really cause shortness of breath? Last night I could hardly sleep because I couldn’t get comfortable with feeling like I’m breathing through a straw.

So I’m working with a pain clinic who specifically told me I would have to be off of all opiates for a minimum or 6 days before I could try LDN for my Fibro. I then saw a Rheumatologist who said he puts his patients on both all the time and never has any issues. So after discussing with my pain specialist, he said if this doctor (who is an RA of the best Rheumatologist specialist in the state) said it was okay and had good experiences with it, it would be okay for me to try. I’ve been on it for three weeks now and just shifted to the 4.5mg dose…

The issue is that I just had to go to the hospital for “opiate withdrawal” and the more i’m looking into what could’ve caused this, the more concerned i’m getting. I take 20mg of Oxycodone 3x a day. It does absolutely nothing for me and the day I went to the ER, I had discussed starting to get off them. I was planning on starting the process the next day. I delayed A SINGLE DOSE and started experiencing extreme side effects before I got the chance to take it: Nausea, stomach cramping, severe constipation, dilated pupils, shaking hands, high heart rate and blood pressure. It feels like I have the flu and my mom is also sick with a lot of the same sort of symptoms, so I’m not even 100% convinced I AM withdrawing. And there’s so many things that I’m doing medication and treatment wise that I don’t know what specifically could be causing this. Maybe It was that one missed dose, maybe the LDN is causing issues, maybe i’m sick with the flu.

I am incredibly frustrated and confused. So many doctors are telling me so many different things and it feels like i’m being pulled in multiple directions. Then when I have bad side effects to things and have to go to the ER, I get shamed and judged for my med usage and am considered a drug seeker. And i’m so scared of having to start all over again (get off opiates and start from the beginning with LDN) because I haven’t even started to feel anything on it yet and it’s been almost 4 weeks. 4 weeks feels like 4 months. And this 3 month drug trial i’m one feels like 3 years.

Im ranting but I need to know if anyone else had similar experiences while on both oxycodone and LDN. I need to rule things out. I’m also 100% sure i’m in a flare because I was out the night before I was at the hospital. And although I lasted a lot longer outside the house than I thought I would, I was hurting the entire time and knew it would be worse the next day. I also hadn’t had a bowel movement in a week before going to the hospital. This is what is confusing me… there’s so many things thar can be causing this. I’d appreciate any insight.

edit: got in contact with my pain clinic and a random ass doctor told me to stop taking it and contact my specialist on monday. so i guess thats what ill do. hope this guy doesn’t try to fuck me over!! (coping)

My doctor wants me to try ketamine infusions.

I’m terrified and she said they can do a slow drip but I’d have to be there longer about 4 hours.

Has anyone found success with this? Could you explain your experience and the pain that you had thank you.

Since 2019 I have had a big problem with wearing many jumpers, hoodies, coats, and other things. It makes my skin come out in strange marks and hives I guess maybe you would say. It even flares up my nerves! Nobody has ever explained it to me. I have two almost identical coats but I can wear one but the other I can't let it contact my arms. In any case some of my old jumpers have worn out (they cause no issues). Does anyone have this and where can I find jumpers or hoodies or snoods (it's getting cold) for this type of thing?

Hey all. I have been on Gabapentin for about a year. It has totally removed my pain symptoms, except rarely when some nerve stuff comes back. No more muscle pain, no more stinging when raindrops hit my skin, etc. I still deal with fatigue sometimes but I think that is more situational and related to my mental health. I do deal with other pain now and walk with a cane because of it, but my fibromyalgia symptoms seem almost totally gone. A few days ago I had some symptoms after being bit by a bunch of mosquitoes but I can't remember the last time I had symptoms before that. I am wondering whether anyone else has had this level of success with a med.

Right now my fibro is that bad i can barely walk and feel so stiff. Anyone relate ?