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 is not new at all. There have been reports on it in the literature for centuries but the diagnostic criteria keep changing.

It is essentially caused by what is described as central sensitization which means some parts of the nervous system become overactive.

Just a taster:

1592 Guillaume de Baillou introduced the term “rheumatism”
1815 William Balfour noted nodules on connective tissues and theorised that inflammation could be behind both nodules and pain. He was the first to describe “tender points”
Francois Valleix “Neuralgia “
1880 George william coined the terms “ Neurathenia and Myeathenia” to describe wide spread pain, fatigue and psychological disturbance
1904 Sir William Gowers “ Fibrositis”
Spontanous pain, sensitivity to pressure, fatigue, sleep disturbance, sensitivity to cold, aggravation of symptoms by muscle over use
1968 Eugene Traut - The first description of Fibrosistis that truly resembles fibromyalgia
female, generalised ache, fatigue, headache, colitis, poor sleep, tender points, “worry worts”

It's different but normally you'd be tested for just about everything. See specialists like a neurologist, a rheumatologist, have tests for arthritis etc. Brain and spine MRIs to exclude any neurological issues.
You would normally have a history of particular symptoms, infections and illnesses. You would also normally have pain points on parts of your body which are particularly sensitive to touch without any underlying physical explanations. If you open the WIKI on fibromyalgia, it even shows you the points.
You will have flare ups and better days but the pain is constant and every pain stimulus is heightened because of the response of your silly body.

Bumpowder do you mind me asking what gave the diagnosis of fibromyalgia alongside EDS? I was diagnosed with fibromyalgia last year but a doctor mentioned EDS to me not long ago (waiting for a referral so not diagnosed yet) and I’d assumed that an EDS diagnosis would basically get rid of the fibromyalgia diagnosis or that I was initially misdiagnosed.

Sorry for the derail!

I have ehlers danlos syndrome and was diagnosed with both at the same time. It's a common thing to happen.

I also have a diagnosis of EDS and fibromyalgia.

I have also, however, had tests for the possibility of MS - I do have brain lesions, and my lumbar puncture was unsuccessful/inconclusive, so these symptoms may be connected, and together may rule out either/or both of the diagnoses I've already been given.

It’s not a derail.

I wanted to know about it genuinely.

Some of my colleagues poo poo it but I didn’t want to start the thread like that.

I want to know the reality of it.

I was diagnosed in the dark ages! These days yes EDS would supercede fibromyalgia but many Drs feel they are 2 different diagnoses so treat them as such but as more research is coming out so many EDS sufferers are dropping the fibro.

If you read the comics that was linked here, it's extremely spot on.
You learn to live with the constant pain and fatigue. You learn coping mechanisms for the mental health issues. You also know that there a days when you will be the proverbial couch potato because you are so tired you can't even breathe without getting tired.
Most people with fibromyalgia aren't shouting it from the roof. Many times you wouldn't know they have it, you just feel like they are really lazy from time to time. And a bit weird and confused. And you don't understand why they look like they're in pain when you touched their elbow to explain something.

TurnOf

I assumed the EDS diagnosis would overule the fibromyalgia one, but it remains on my medical record.
Last I knew, I am recorded as having EDS, fibro and an 'severe unspecified pain condition'

I read a study some time ago that fibromyalgia is on a kind of MS spectrum can't remember where I saw it but there are some symptom overlaps and interlinking with how the nerves are affected

Some of my colleagues poo poo it but I didn’t want to start the thread like that.

You can tell your colleagues to go and fuck themselves. I wouldn't wish the diagnosis on anyone but honestly, for people smirking I'd wish they walked in a fibromyalgia sufferer's shoes for a month. Then we can talk.

You can tell your colleagues to go and fuck themselves. I wouldn't wish the diagnosis on anyone but honestly, for people smirking I'd wish they walked in a fibromyalgia sufferer's shoes for a month. Then we can talk*

I can’t do that but I can gain an understanding and try to encourage them to educate themselves?

Sorry asterix fail.

I developed it after having glandular fever which I believe is common.

I am in pain all the time sometimes worse then others, some days I can barely move.

When someone touches me it hurts, if someone pokes me it is like being stabbed
I am always tired and have brain fog again some days worse then others
I can’t bear loud noises either they really shake me up
I used to be so fit and up until 5 months ago I managed to work. It’s hell

Bum, that's entirely possible. I have lesions on my brain after an encephalitis. Fortunately they have been the same for the last 20 odd years. At that time I was told the encephalitis I had could have been the first MS attack, fortunately the severity of the issues never returned but at the time I spent five days unable to move because of the vertigo, it was like being extremely drunk, just for a long time and with no mood changer.
The symptoms I have have been described by some MS sufferers, I just don't have the severity, fortunately.

Fairylights

It's a vast spectrum and like any other disability, the ability levels are varied between each person.

Some people who have it work others can’t. I managed to work for 10 years with it but five months ago it got that bad I had to stop. I was working and then spending the rest of the time in bed

I used to have a role where I managed volunteers and a lot of them had it.

I think it was easier to volunteer and be in a role where there wasn’t an expectation of being paid as some took days off frequently due to it.

I had no idea that this is what used to be called rheumatism.

Imagine your muscles telling your brain they are fatigued when you have hardly moved. Imagine your nerves sending pain signals to your brain all the time when there is no reason or outside stimulus to do so. Imagine your mind so full of fog you cannot finish a sentence or recall a memory, name or place. Imagine your limbs suddenly deciding they are not going to cooperate today. Imagine your hands not gripping the item you need because at that moment, they have decided to give up or cramp.
Imagine getting just a few hours sleep a night because the pain, sweats, twitching, freeze and anxiety/frustration keeps you awake.
Now imagine never knowing when this is going to happen, how long it will go on for it if you are ever going to rid yourself of the pain.
That is fibro

Fairylightsandwine I don't know the statistics. Chances are, there's someone working with you suffering from the fibromyalgia or even in your family or a circle of friends. They just don't broadcast it. The severity of symptoms can vary too, depending on the weather, levels of stress etc.
I am lucky enough to be able to work and have a normal family life with it. Well, normal with constraints because it does impact your life and your family's too but I am trying to do my best to live my life as normal as you can get.
Others may be worse off.
It's not something you can really grade or set out a roadmap for.

Thank you both, it’s all still quite new to me so it’s helpful to hear from others that have been through the process already.

I could work up until fairly recently when I started collapsing if I stay stood up for longer than 5 minutes and my pain levels have skyrocketed the last few months.

Was diagnosed with this a few weeks ago, have to admit knew very little about it before then, although looking at symptoms I have had it for at least 6/7 years.
My health has been crap since a bad bout of cellulitis nearly two years ago which took a total of 9 months to ease, am under lymphodema clinic, podiatry and GP all due to the worsening of symptoms triggered by the cellulitis.
Its hell, no other words to describe it

One of my friends has this. A few years ago she was very active in a sports team, she had to jack it all in and struggles to get out of bed at times.

If it can be triggered by illness is it some sort of auto-immune disease do you think?

And yes, I am working full time. Painkillers and energy drinks are my friend