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

I would love the doubters to have it for a week, just a week. That goes for members of my own family who don’t doubt I have it but I think they think I make it out to be worse then it is. Such as an eye role from DH when DS jumps or stands in me and I scream out

Bumpowder, that is interesting. I have MS, when I was first dx my then neighbour's mum also had ms, and my neighbour had ME. For a long time, I could see very similar effects in the two. Then I started hearing about fybro too, and thought that whole thing, MS, CFS/ME, Fybro, they all sound related. So I've suggested it here and there but not had any feedback on it at all.

Now my dd is waiting for a dx of CFS/ME and fybro I am even more sure they're all related closely.

I wonder if some people say they have the illness but haven't seen a Rheumatologist for a diagnosis. I was stunned when I received the diagnosis, after months of waiting and then tests and excluding other conditions such as Rheumatoid Arthritis, and it's a bloody awful thing to suffer from. It's a viciously disabling and entirely unpredictable illness.

It can often be caused by physical trauma, apparently, and I relate it to unsuccessful spinal surgery following late diagnosis of herniated discs. I also have permanent nerve damage in my legs. I'm in constant pain that even morphine up to 6 times a day doesn't control. I can't be referred for pain mgmt for my spine & leg problems because of the Fibro. Between the Fibro, other constant pain & the drugs I take, I've lost the ability to think straight most of the time, my memory is shot to pieces, I've been forced to give up work, I frequently need help to go to the loo and get dressed. I often only get out of my PJs to put a fresh set on. I fall a lot, painful & embarrassing, I hunch over, I am often bedbound, almost always housebound, i can't bear noise at times, my skin is sensitive and my muscles ache so badly.

There are so many other things I could add but I'd be here all night. To those who sneer at Fibromyalgia, please think again.

Oh by the way just to say that the fact that Fibromyalgia is a diagnosis of exclusion and may not actually be one condition, does not mean that it is 'psychosomatic'.

Instead sufferers probably have multiple co-existing and as-yet non-diagnosable conditions or even pre-disease symptoms.

It can be so up and down, some days the symptoms aren't as bad and other days they are horrendous. I could be walking down the street when I get this shooting pain in my thigh that feels like someone is stabbing you or my feet spasms up so suddenly that I cry out. One minute I am walking ok the next I am limping because I have severe pain in my knee that came on suddenly. Then of course there's the fibro fog where I completely forget random words like shed or kitchen towel. I made my son his lasange yesterday and was asking him was he enjoying the..... I couldn't remember lasagne, I had to ask him what he was eating again. He looked at me as if I had two heads.

I have it and it's ruined my life!!!! I have had Me & Fibromyalgia since I was 13. I'm 33 now and can barely walk anymore

I do work need a combination of painkillers/antidepressants/antimigraine drugs to do so. It’s hard for instance tonight I came in from work at 5pm and feel asleep until 7pm as I was so exhausted. Now I am struggling to sleep as my ribs and legs are hurting so much.

I’ve been diagnosed 2 years by a rheumatologist after a lot of tests. There’s always a bit of me which hurts.

This short video will tell you everything you need to know:

I believe it’s very much a ‘catch all’ medically.

Covers nerve pain and fatigue up to chronic fatigue and ME.

My friend was diagnosed with it but it felt very much like a ‘well we can’t really work it out so cling to this’

I think a variety of things can lead to a fibro diagnosis much like autism can account for a variety of learning delays and so on.

I've got Fibromyalgia & ME/CFS, I got diagnosed with fibro after having a traumatic birth with my son. Within about a month of giving birth I started with pains in my joints & chronic tiredness, I couldn't think straight, at first I just put it down to my hormones settling down & I was diagnosed with post natal depression. After going to the doctors a few times I was referred to see a rheumatologist, I felt like I was going out of my mind, my GP suspected Rheumatoid arthritis, but after loads of blood tests & Xrays I was diagnosed with Fibromyalgia, I was put on painkillers & antidepressants. I carried on working for 6 years but I was having more & more time off sick, the drugs I was on weren't helping, I was falling asleep at work & even though I only worked mornings, some days I had to fight to stay awake to drive home. I was eventually pensioned off from work & shortly after I was diagnosed with ME/CFS, I haven't worked for 8 years now & for the past 18 months I've had to spend more & more time in bed, I hardly ever go out, I can't walk much, it's an effort to cook a meal as I'm in too much pain to stand for long. I'd give anything to get rid of these bloody conditions, I'd love my old life back, I feel like I haven't got a life now. I'm not asking for sympathy, I just wish somebody would come up with a cure or proper treatment because once you are diagnosed it doesn't matter what you see the doctor with, they blame fibro & ME.

I was diagnosed with it five years ago but looking back I had lots of symptoms but just never put it together until I had a bad flare up and was in so much pain. Now I'm much more aware of my triggers (mainly extreme cold, stress and diet - especially aspartame) so it's easier to control but still can be debilitating.

I was diagnosed with fibromyalgia nearly 6 years ago. to everyone who has it - it is the most horrendous condition.

Mine was caused by a traumatic birth, my gallbladder trying to kill me and severe ilness lasting several months afterwards. My body is trying to recover but 'Every day life' slows that down. People used to take to their beds for months for recovery periods. Modern day doesn't afford us that luxury so more of us end up suffering with it as well as improved diagnosis.

Every evening/morning is some level of agony. Sorting my vitamin B/D/Iron levels have helped a great deal though.

It is not an easy diagnosis to get by the way. It has to be confirmed by Rhumatologists and god knows how many blood tests, sample tests, bowel biopsies (for some) and hoops to jump through.

But then I'm sure you know this, OP. Before you even wrote your post.

I hate it when a new symptom develops... I am only supposed to see one dr at my practice because ‘they know my complicated medical history’. Each time I go in I apologise because I am sure they see my name on the list and go ‘not her again!’.

My mil suffers with it..and honestly it's awful to see how chronic her pain is..literally bed bound for days. Feel helpless! My husband looked into some cannabis oil for her recently...anyone used this before?

I am another with a diagnosis if EDS and FM. I also have a diagnosis if CFS which my doctors are unwilling to expunge from my records.

I've been in pain as long as I can remember.

I watched a documentary on pain and it said premature babies were more likely to go on to develop chronic pain conditions due to being hypersensitised whilst their brains were still highly plastic and developing.

Interestingly, I was premature. I have been prodded, poked and tested from the day I was born, first operation at 6 weeks, failure to thrive for a time despite being in a nurturing family, first glandular fever test as a preschooler. I've had GF at least twice, probably more. I had encephalitis at 5 (thanks, rubella!) viral meningitis at 18 and early stage sepsis at 15.

The Fibromyalgia was pretty much the last thing to be diagnosed (apart from Menieres), when I was in my late 20s. Its been 7.5 years. I am still working 35hpw and don't claim any disability benefits for it.

Currently I'm getting relief from CBD oil (legal, THC-free cannabis). It's about the only thing that's ever given me any relief and it's amazing. I've heard there are NHS trials of medical marijuana for EDS and FM going on currently. I hope they're successful, because it's really helping me.

@Amatullah we posted at almist the same time. Read the end of my previous post.

Amatullah I use cannabis oil to control pain, it has less side effects than most of the drugs that I've been prescribed & doesn't leave me feeling like a drugged up zombie.

I like wearing high heels but I have been having some pretty bad heel pain recently. Lucky me my job allows us a very casual dress code so jeans and Sketchers or Nike Vapormax are my best friends. And hoodies to find some shelter from the noise.

I tried amitriptyline and CBD oil but both left me like a zombie. Shattered and tired. I tend to have very strong reaction to many medications (steroids almost killed me) so I just have to do without. Painkillers and trying to be as active as possible are my saviours.

In healthcare most people see it as moaning women without a real illness going on about being tired and in pain. People eyeroll when they hear it like its not a real condition say like arthritis.
Shame as i know two people disabled by it.
Ive noticed sufferers being warriors of 'fibromyalgia wont beat me' and claiming pip etc. That is seen as malingering by some as it isnt a measurable illness.

This is how I describe how fibromyalgia makes me feel: -
Imagine waking up the day after you've done a really long and hard aerobics session, having been previously very inactive. Every muscle in your body suddenly hates you and every move you make is difficult and painful. Add to that a generous measure of brain fogginess then you're mostly there.
Mine started just as a slight pain in my hip about 12 years ago. It was just a little niggle first thing in the morning. I had a sore knee, then sore wrists and it just spread from there. I have been told I have a lumbar herniated disc and most of the discs in my neck are degraded. I have been told I have "mild" carpal tunnel syndrome, "mild" sciatica and "mild" plantar fasciitis. All of which are caused by compressed nerves, so there's probably a theme running here.
Anyhoo, all I've been offered so far is CBT. Does that actually have any effect or is it just as case of them telling us how not to make such a fuss?

I worked in social care and came across many people that had it, usually with other things too. We absolutely accepted it as a real disability. Just because they can’t find a root cause/don’t know why something happens, it doesn’t mean the pain and restrictions on activity aren’t real.

Why are you so interested, OP?

Another here and what I find really difficult is finding a GP with knowledge of Fibro/CFS/ME/etc because the first thing they do is send you for yet another round of tests etc, try this medication, try that medication, all of which I've tried at sometime in the past without success. When none of the tests shows what they suspected, they won't discuss symptoms further, or listen to what you have to say. Just recently a GP accused me of telling lies, so I stood up and walked out while telling her I had more to do than go to her rooms on a day I felt like cr*p and then be told I'm telling lies. Yes, she pressed the wrong button because I just don't tolerate lies from anyone.

Nat6999, Amatullah and TittyFahLaEtcetera, thanks for that update as I have been wondering about Cannabis Oil after it's been so prominent in the media recently. It must be the only thing I haven't tried!

Fibro for me developed after two completely separate bouts of Ross River Virus ( epidemic polyarthritis), then I developed CFS/ME/Fibro. Prior to this I had been diagnosed with Osteoarthritis in my early 30's, but given the chance I would revert to that in a heartbeat as OA (while painful and debilitating) was nothing in comparison.

I feel sorry for those of you still trying to hold down a job that must be so hard because I know there is no way I could return to work. My job was made redundant and I was taking a break for a couple of weeks when I got sick, so job hunting was put aside...unfortunately that's where it has remained and I've been retired for 16 years. Until that time I was very fit and would work from daylight 'til dark, now that's just a distant memory as, like most of you, I have to take rest breaks on a regular basis.

Thanks to everyone sharing your stories while I hate that other people suffer the same things I do, it's refreshing to know that someone actually believes what you have to live with.