Fibromyalgia

[MrsDylanBlue]

A lot of my FB friends have this and a lot of families I work with.

Is it a new (ish) illness and if not what was it beforehand.

Do we know what causes it.

TIA

It sounds like it would be a horrible condition to have.

I have a friend who says she has been diagnosed with this. The problem is it seems to be used to name symptoms when anything more concrete can't be diagnosed. This friend has lots of unprovable conditions which she gets treatment for. They stop her working. They don't stop her going on all day shopping trips, long days out with her family, parties, city breaks, days at the races or being constantly dressed up in high heels and full make-up. Her poor husband works all hours to provide for the family because she says she can't work because of it. I'm not convinced. She's currently pushing for Botox injections (on the NHS ) to help with her migraines- the wrinkle free forehead of course is not on her mind- at all!

I'd say it is a disease that someone could convince a doctor they had if they had read up and knew the right things to say.

I was diagnosed after having DS2 - long and incredibly painful labour. I also have a concrete diagnosis of rheumatoid arthritis, which I’ve had for a long time.

I think some people assume you’re just being lazy when you happen to say how exhausted and worn out you are. Or I get “yes I’m tired too”. Not really the same though is it. I used to get tired, after a hard day or bad sleep. Now I could literally fall asleep anywhere, I’m so worn out I can’t talk properly sometimes.

I forget so many things, and constantly leave notes for myself. I get frustrated because I’m a reasonably intelligent person but some days struggle to grasp the simplest things.

Then there’s the pain. It hurts to be hugged, someone patted my shoulder the other day and I nearly shot through the roof. I’ve had to tell people I’m not touchy freely in the hope they’ll stop it so now they think I’m an ice queen but the reality is that some days every touch is agony. If I walk into a door frame (happens frequently) the pain is enough to cause tears. Brushing against the corner of a desk, something that wouldn’t really bother most people, is still hurting me 6 hours later (as if it just happened) and the bruising is horrendous.

I work ft, but I do take occasional days off to rest when I get to the point I’m wiped out. Luckily I have a good gp, and when I need pain meds prescribing/changing I can sort it with a phone appointment.

Talking about brain fog, I had meant to put something else on the end of that post and I’ve totally forgotten what that was!

I'd say it is a disease
It's not a disease.

My auntie has this and she's incredible.
She sounds like she's in constant pain every day, every day it's a struggle for her but she gets out of bed and pushes through it and never has an 'off' day, she just grits her teeth and gets through it every day.

She's amazing & I take my hat off to her!

It’s a disorder.

The team I work with was involved in one of the clinical trials for it (pain involvement.)

The problem is that it’s very difficult to define fully and it’s a bit of a catch all diagnosis. I suspect that a lot of people diagnosed with it (who genuinely feel pain and have symptoms) are actually suffering from a range of conditions and haven’t been diagnosed properly. There’s a big overlap with CFS symptoms, some rheumatic symptoms and also a huge overlap with the kind of problems you get after some viruses. CFS is now being pinned down to possible defects in mitochondrial function.
Post viral illness is really poorly understood and can be very serious - after the 1918 flu pandemic for example there was a massive increase a while later in encephalitis lethargica (sleepy sickness.) Oliver Sack’s wonderful book ‘awakenings’ deals with this. Things like narcolepsy are often increased after flu outbreaks and the investigations into zika and Ebola show that even after you’ve ‘recovered’ from a virus you can still have severe effects from it.

So is it a real thing? Yes it is. I’m not sure it’s one monolithic disease - I personally think it’s a symptom cluster that’s found in several disorders. More like a syndrome than a disease in the classical sense. Like fever isn’t a disease in itself but is still a thing.

Is it new? No. I don’t think so. I think the concept of it as ‘one label’ is new. But I imagine people have been suffering post viral illness, fatigue etc since time began.

@GrannyGrissle - I think it stopped being the "we have no clue what's wrong with you" now, as to really have it confirmed you need to go through all medical tests to prove it's not anything else (at least I did). The severity also depends and you can have your ups and downs. I am not really into socialising so you won't find me on nights out but you can find me running 5 miles or more in the morning or hiking for 6 hours. I'll be totally shattered afterwards but it's all about trying to live the life as normal as possible.

I was diagnosed by a rheumatologist three years ago following 18 months of various tests coming back negative.
Currently I'm still in bed after a really bad night sleepwise.
As well as aĺl my joints aching, the skin on my legs from my hips to my ankles is burning. Every single scar on my body is stinging.
Last week I had a 24 hour blood pressure trial as I have low BP, I had to stay at home because every time the cuff inflated I cried with pain. I previously had a very high pain threshold.
Today will be what most people would call a lazy day, I'll just be trying to survive until bedtime and coping with the guilt I feel at my inadequacy.

I suspect that a lot of people diagnosed with it (who genuinely feel pain and have symptoms) are actually suffering from a range of conditions and haven’t been diagnosed properly.

This is what I believe too

Thanks guys. We did buy it for her just trying to figure out dosage to be as effective.
Those that have fibro what help are you entitled to..we have had such a head ache regarding back to work assessments with the dwp. My mil is in no state to work she can't walk a few yards without having to sit and is in constant pain. They've been asking her to attend a meeting thats a 3 hr round trip, not to mention the the actual appointment and waiting around etc, she just says she can't physically do it and they wernt accepting gp letter saying a home visit is preferred. ?! It's baffling. She also asked go for social services help because her main cater was her daughter shes now 18 but they enquired before she was and they heard nothing back. It really had an effect on my sol, missing days college

sorry op feel like I've hijacked post x

to really have it confirmed you need to go through all medical tests to prove it's not anything else (at least I did).

Yeah, it’s better than it was - it used to be the ‘hysterical female we have no idea what’s up with you’ diagnosis of choice. :( There are diagnostic criteria (pain points for example) but a lot of it is still by exclusion - and that’s an issue for me. I suspect it’s a syndrome rather than a root cause disease in its own right, and that it can be triggered by several different things. The trial the team I work with did actually had a specialist unit to confirm diagnoses under their own very specific criteria.

Just my opinion mind.

I have Fibro and get the enhanced rate of both care and mobility PIP for it. I've also been put in the support group for ESA because of it, and I have a blue bagde, so all those things are possible.

Mine is bad enough that I can't physically stand for more than a couple of mins and have to use a wheelchair outside of my house. Inside the house I need a walking stick to stop me falling over constantly.

The pain is constant and uncontrolable, I take two different painkillers on a 24/7 basis and have a third for breakthrough pain, but even then it only takes the edge off. I'm never truly painfree.

I get so tired that I will sleep for 72 hours because I just don't have the energy to get out of bed. I've soiled myself because my legs were too week to let me get up and use the toilet many times.

The brain fog is the worst though, I can feel myself getting stupider everyday, forgetting the things I used to know. I went from a good kid with A grades in school studying computer programming to someone who struggles to read because it takes too much concentration.

I'm 28 years old and I've had this since I was 17. My life was over before it ever got a chance to start. Horrible horrible illness and anyone who wants to tell me it's fake can come be a fly on the wall in my house.

I’m in the process of diagnosis. Need to try everything else first but the pain is getting worse and worse. I don’t think it’s new it’s just that it has a name and is being recognised now. One doctor told me it’s all bullshit basically and I believed it so never mentioned the pain to any of them. Once my knees were playing up badly my new doctor mentioned it. We are trying other hangs first and physio and if the physio doesn’t see anything wrong as such then I will be diagnosed with fibromyalgia. I’m always in pain, even if I’ve done barely a thing I’m always sore. Particularly between my shoulder blades and my chest.

I e also got mental health problems, depression and anxiety and I’m always cold, my feet never warm up I’m constantly dizzy and get headaches a lot. To be honest here is too much to list lol I guess a diagnosis will help make me feel less mad but I don’t think anything can help it.

Just being tapped can fee like someone has punched a bruise. I just thought I was weak etc but it all make sense with this one diagnosis. The tiredness is the worst, I also have an under active thyroid and thought the tablets would have helped with the tiredness but not so much. I’m worried about the pain I’ll be in when pregnant with a third baby. But the end result will be lovely. A lot of people don’t believe it to be true though which is upsetting if it turns out it’s what I have. I’m only 24 fs.

Thanks @aLilNonnyMouse..im sorry to how much youve been suffering..its really horrible. My mil is the same with regards to the growing list of health conditions shes suffering with. But trying to get help from authorities is like drawing blood from a stone, theyre all so clueless as all different departments contradict each other (the experience weve had).
My mil suffers with depression and i know thats a major factor to flare up or good/bad days..

You sound just like my mil

I have fibromyalgia. Had loads of tests. I do have lesions on my brain but lumbar puncture was negative.

I have all the classic symptoms and weird neurological ones. The worst is the fatigue, dizziness, visual disturbances and aching legs. It all started after a period of extreme stress and life threatening infection in my early 30s.

I am unable to work at all. (who would employ me?) If I do too much,( and by that I mean, just going to the shops) I literally have to drag myself upstairs to bed to rest and cannot think properly, my eyes go blurred and I need to sleep.

I am just thankful that I had my children very young so they are grown up now, there is no way I could cope with kids now.

I am not even 50 yet. Its shit.

and also, I do not get any benefits at all, (even tho i worked in NHS for years) I am deemed fit for work by the ESA people. Luckily my wonderful, supportive husband takes care of me, otherwise I would be totally fooked.

Grannygrissel i go out, I go to my local bar with my husband, I sit down and have a chat and a couple of drinks. I have to sit and wear flats but it's a break for me. There are a lot of things I can't do. It can take me the full day to recover but if I stopped then I wouldn't be out side the door. I haven't been It for the last few weeks because I'm in to much pain but I will try to still do some normal things when able because other wise i would have no life. I have tried to go on small walks but find i ache to much afterwards

This is going to sound wanky. I dont mean to cause offence.
Can i ask the sufferers of before diagnosis you were 'sensitive' people anyway, ie food intolerences, easily ill, generally unwell ie catching colds easily and taking longer to recover, lower pain threshold, mood very reactive to stress? Or rather did you have a strong constitution, a 'get on with it' mentality, and the symptoms struck from nowhere?
In my experience it is the former types who have the diagnosis-no judgement at all just wondering if certain people are more vulnerable?
Do you/have you felt ashamed if the diagnosis or reluctant to disclose it due to the reaction of people including professionals?
Thanks

Is no one questioning the OP's motives for posting this? It reeks of lazy journalism.

I'm reluctant to share my experiences as I don't want them published in a rag.

chavtastic

I don't fit your 'experience'.

HTH.

ICant

The OP definitely sounds goady, at the very least. Am glad this hasn't gone the way it was intended to.