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

This is a fascinating thread. I know people with both Fibromyalgia & CFS/ME and have learned lots here. Thanks for contributions. It's a bastard of an illness that steals lives

Idk if there is a relationship to MS.

MS is a bit different - that’s caused by degradation of the myelin sheaths on nerves - a bit like plastic coating on a phone cable. Once enough myelin is gone the nerves don’t conduct impulses as well as so you get a range of symptoms. It can be episodic too, or progressive or a bit of both.

You can see MS if you look at the nerve cells so it’s something that can be positively diagnosed rather than diagnosed by exclusion.

We still don’t really know what causes it though. Possibly a genetic susceptibility, low vitamin D is associated too and then a final trigger of viral infection, and that is something that’s maybe similar to fibro and CFS. Autoimmune activityvand failure of the cells that make the myelin are in the frame too but we still don’t know exactly what’s going on.

I have this... Its hell

MS kills people and sends them blind. It stops them being able to swallow. They can be paralysed.
It is in poor taste to compare fibro to MS.

Theres a real minimisation of MS on this thread. It isn't similar, all this about myelin sheaths is serious stuff requiring months on rehab wards to learn to walk and talk. Needing chemotherapy. The episodes are not comparable to flares whatsoever.
Being told you have fibro is shit but being told you have ms means having to make some serious plans. Its like comparing a benign lump with cancer.

Fibro and MS do have similar early symptoms but that's kinda where it ends!

chavtastic absolutely not minimising - MS is an horrific, progressive and fatal disease. Apologies if my post came across as minimising in any way - not my intention, I was trying to say it’s not similar to fibro in any sense other than possibly a shared concept of genetic threshold + environmental trigger

Chav there are different types of ms, the one you are speaking about is the most severe. 8 out of 10 people however have relapsing remitting ms. Nobody is dismissing ms but a lot of the symptoms are very similar to fibro. Just because a condition isn't degenerative doesn't mean that it isn't any less severe, many people with fibromyalgia end up in wheel chairs because they are unable to walk with the pain. Unless you have had a severe flare then you really can't comprehend it

It's really in poor taste to be so dismissive of fibro and it's impact on people. I have spoken to people with ms and a lot of their symptoms are fairly manageable with medication, they go in remission for long periods of time and have some what if a normal life, of course there is exception and also there is worse forms of ms.

I was first diagnosed 12 years ago. Started with horrendous pain and over time got better. But I have flare ups when I’m very ill or extremely run down. It wipes me out for weeks or months still.
Chav - do you have any idea how debilitating FM is ? Not minimising MS but please don’t minimise FM either.

I get the feeling that some people that don't have FM think it's an attention seeking thing or even imagined. Dh told his friend that I'd been diagnosed and he said " oh is that the one where it's all in their head and where they can't get a real diagnosis "

GreatDuckCookery I’m going to sound a twat here but, I didn’t fully belive it either (which is why I didn’t bother asking my doctor about it when everything else I’ve been checked for has been fine) I was led to belive by my mother and a doctor that it’s not a real problem, not many healthcare workers belive it’s real either. Someone I know would complain of pain bt was always moving furniture and my mum had me believe that’s why she was in so much pain. I obviously educated myself and found a new Doctor who does belive it’s existence but will check everything else first which I’m in the process of.

I'm really not minimising FM. But the comparison to MS isn't a good one, perhaps because there's nothing to compare it to. interestingly nobody has likened it to rheumatoid arthritis.
I know someone who did her PhD on FM and said that she was shocked how it disabled women. She said that many were in tears because nothing was done and nobody took them seriously. Nothing seems to work for it though, it must be frustrating for patients and medics.
I myself have known two women undergoing a trial for the pain, but that interaction was as a previous poster described as competitive. I think what doesn't help with FM's 'image' is that a minority of lazy people use it as an excuse for anything, but that the majority of women with it are really suffering and nobody can see. So the voice isn't representative so to speak. I'm really shocked to read people's stories and ashamed to say that had I not known you were intelligent women who functioned well previously I would have wondered if it was a trait. So I apologise for that.
I really am not dismissing it. I don't understand it because I can't, but oranges are not apples and vice versa, and I feel sorry for anyone with it.

But chav my doctor recommended a site in which you put in your symptoms, after I put in mine the two top conditions were Ms and fibro, so obviously a lot of their symptoms over lap.

Why would a doctor recommend a site where you put your symptoms? Surely they'd look at them objectively.
You could put in the symptoms of anything and a handful of diseases/syndromes would come up. A lot of malaise is just a collection of different complaints.
Google isn't accurate in measuring, comparing and diagnosing illnesses.

It was a site she recommended when I first was diagnosed with fibromyalgia it also have information about conditions. I have checked countless sites and read up on both fibro and ms and they have very similar symptoms.

I have fibromyalgia.

The last person I told replied “I thought that was an illness people made up to claim benefits.”

I am very aware of what MS can do I have more than 1 relative with the primary progressive form of the disease it's brutal and cruel and not something I would ever wish on my worst enemy. It therefore goes without saying when I was first diagnosed with fibro the Drs were very interested in my family history and I was thoroughly investigated!

There are articles and studies into both conditions, articles and studies into familial links and how the nerve endings are affected and indeed how there have been recorded incidence of patients with fibro developing secondary progressive MS as well as comorbidity of MS and Fibro. It's fascinating once you get digging!

No one is minimising MS however it takes many forms.

Sadly there are healthcare professionals who claim fibromyalgia doesn't exist. It absolutely does and we have evidence of that - people with FM have decreased levels of serotonin and norepinephrine and increased levels of glutamate. Interestingly, conventional pain medications often do not work well for FM patients. The theory is that these patients have increased levels of endorphins and so adding extra opioids doesn't help them. We know that some newer antidepressants, tramadol (which essentially functions as a mild opioid combined with a newer antidepressant), and some antiepileptic medications (such as gabapentin and pregabalin) are helpful in treating it. We also know that we have to be very careful with regard to medications for these patients, because they tend to be very prone to getting side effects and often severe side effects.

It's a very real disease. I spent time doing a practicum with a doctor who specialized in chronic pain, and HE made it very clear to patients and to his students (including me) that FM IS a real disease.

I had a GP who was certain it's real we just haven't found the way to prove it yet. He was very professional and I didn't expect that. I also knew a trainee HCP who said I never knew FM was just bullshit illness, it's just seen as something you make up. After a shift in the clinic.
Until we can measure it and give it a cause, there will always be people who deny it's there.
I think the mental health argument would give it more credibility in that respect. I have never heard people condemn depressives in the same way they do FM. People accept depression and anxiety are real. The same isn't true for FM. I think hearing sufferers try to compare it to other serious physical diseases is perceived as whining (not my opinion). I think that if it were acknowledged as a reaction to stress then fewer people would criticise it tbh. But that suggestion has been met with indignance. It really doesn't matter what the cause is, it is the suffering which needs changing.
Must be horrible to have people question something you have lost enjoyable parts of your life to.

Pregnancy also put my Fibro, CFS & Hypermobility into remission. Also kickstarted my Thyroid

Don't let them fob you off, @CrochetBelle. I also had brain lesions, abnormal inflammatory markers in my blood, and weird symptoms but was fobbed off with "fibromyalgia" until my undiagnosed MS got too bad to ignore, but unfortunately I'm left with permanent, life-changing disability.

I don't doubt the validity of fibromyalgia as a disease, I just think it's sometimes a catchall doctors use when they don't know what's wrong. I also don't think, as a diagnosis made by exclusion of other evident causes I should have been diagnosed with it after significant brain lesions had already been seen on my MRI.

Sorry. I can be a bitter bitch after midnight.

Like many of you on this thread, I'm sure, I'm exhausted, frustrated, and in pain.

Another fibromyalgia sufferer here.

The soles of my feet have my eyeballs and facial bones have hurt so much i feel like iv been attacked.

Working as a nurse makes it extra hard sometimes as people have the misconception that nurses dont know suffering... so many times patients have shouted at me that i dont know what its like to be in pain.

If only they knew