To be slightly sceptical about my fibromyalgia diagnosis?

[littlescratch]

I have just been diagnosed with fibromyalgia by a consultant rheumatologist, following 3 years of intermittent pain and fatigue. I originally saw a different rheumatologist who diagnosed me with hypermobility spectrum disorder and I also had an MRI which showed slipped discs, scoliosis and some osteoarthritis.

I never dislocated anything, but I would (and still do) periodically get very achy and fatigued which made work difficult (fairly challenging job). I always just put this down to the HSD, but after a particularly bad flare I decided to get a second opinion. I had a full work up by a cardiologist which showed no issues (except venous insufficiency/poor circulation to/from my hands and feet) and appointments with a rheumatologist including blood tests which came back clear.

The rheumatologist has said “you’ve been hypermobile your whole life but only had problems for three years - so the hypermobility can’t be causing the problems”). He has diagnosed me with fibromyalgia in addition to the HSD. The advice is to make lifestyle adjustments like getting enough exercise, rest etc, all of which I already do. I have also been prescribed tramadol and amitriptyline.

Here’s my issue - what IS fibromyalgia? It seems to be just a description of symptoms. What is the cause? The rheumatologist said that a study showed that 80% of fibromyalgia sufferers have HSD or Ehlers Danlos. Aren’t those conditions the real cause then?

I am at a loss, because accept what he says about having been hypermobile my whole life without issues and I do also have lots of odd symptoms like brain fog, tingling, numbness, etc which seem typical of fibromyalgia. I also get “flares” of it where it is bad for a few days with awful twitching muscles, pain, fatigue, brain fog etc. and then it gets better. Also it started after a very stressful/traumatic time and I have read stuff saying fibromyalgia can be triggered by trauma.

I don’t want to tell people that I have fibromyalgia because so much is not known about it and there’s a lot of scepticism. I also hate all the memes and stuff about it on social media, and don’t want to be associated with all of that stuff. I saw an old thread on here in “Ask Me Anything” where loads of people said it was bullshit etc.

Also, could there actually be something else wrong with me that is being written off as fibromyalgia? Would be interested to hear what people think, both people who have been diagnosed with it and believe the diagnosis, and those who are sceptical. I don’t know what to think really.

Hyper mobility and Fibromyalgia go hand in hand sadly. I could go on and on about how I’ve overcome severe Fibromyalgia in the last 10 years but it’s a very long story

Simply put you have to really want to get better and be prepared to put your self out to do it

I’ve been under the care of a specialist physiotherapist who specialises in Fibro here in the UK she’s had hundreds of successful cases including me

If you want her details you can DM me and I will give them to you, she’s just done an article for Fibromyalgia uk this month and is just about to do a pod cast for them

In my experience, fibromyalgia is what you get diagnosed with when they have exhausted all other options and it isn't a conclusion that's dished out lightly..
It seems to be a collection of symptoms with no proper cure, medics have spent years trying and testing attempts to manage them in the hope that they don't completely debilitate the sufferer further at worst, and improve things at best. Maybe in years to come they'll find something that works.

I've lost count of the blood tests and exploration of other possible causes spanning at least 3 years before I got my diagnosis and believe me, I would rather they'd found something else that was 'fixable'.

Accepting this is it has been hard but frankly, I haven't got the energy to waste fighting it, or anyone who thinks it's less than real. You know what you're living with and nobody else can understand until they've walked in your shoes.

My BIL is a doctor and he says that they diagnose fibromyalgia when the patient is presenting with unexplained pain and symptoms. As then they have a diagnosis of SOMETHING even if it doesn't mean anything in reality.

I'm in a not dissimilar situation actually. I've had problems for over 20 years which get worse and worse but have rejected a fibro diagnosis on the basis that I don't feel anyone, other than one GP, has ever listened to all my symptoms. My worst problems are focused around my wrists and arms and everyone I see wants me to have carpal tunnel but then are stumped once they've examined me and discussed, they're so reluctant to consider everything together (one doc said we had to deal with each issue one at a time and wouldn't discuss more than one thing per appointment....I then randomly got discharged). One doctor tried to tell me it was fibro but in her words, "I can't really think of anything else so we could just say it's fibro". Like you, I don't really understand what it is, and I'd like to be sure that any diagnosis is correct, rather than labelling symptoms because it's quick and easy.

Sometimes it gets me down as I do struggle with a lot of pain and other symptoms like pins And needles, electric shock feelings etc and feel very alone in that. Not many people are aware as I don't feel I can discuss it without having a name for it.

I hope you find the answers you're looking for and sooner, rather than later.

Sorry for the steam of consciousness with no paragraphs! Feeling a bit rough this evening after my covid jab and 2 non sleeping kids!

I think ME / CFS/ fibro is when you've been 0rrsenting with symptoms for more than 6 months and there isnt any other cause that they can medically treat.
I guess it's useful in that you can get referred on to further treatment of symptoms for those dignoses eg I'm on a CFS management clinic but yes you're right it does treat the symptoms rather than the cause. But when they can't find the cause, it's better to treat the symptoms rather than tell you its 'all in your head's or 'womens issues' etc (lesser of two evils I know )

Have a look at the you tube film by Dr Martin Rutherford that's 1 hour 49 long. It goes some way to explaining. One of the things he mentions in passing is that fibro sufferers often have Hashimotos but dont know it. I paid for a blood test and found it to be true for me. That gave me some evidence.

What garlictwist said, basically. I’m an OT and come across fibro patients a lot in my work. I’d feel disheartened with a diagnosis of fibromyalgia as well. It really is a non-diagnosis as there’s no real treatment beyond painkillers and psychological support to learn to deal with it, after being reached following multiple inconclusive or perfectly normal tests and scans. As soon as an HCP sees a fibro diagnosis on medical records there is a definite sigh of dismay because it can complicate and pervade pretty much every other coexisting condition somebody has, just because chronic pain in any form will do that, but fibro is extra. I would want all other possible diagnoses excluded if it was me but if you’re already under a rheumatologist, I suspect they have been, sorry. You have my sympathies.

In addition to someone elses point above, i know someone who was diagnosed for years as fibro which turned out to be lyme disease. Treatment with antibiotics for a period of time and is now better. Maybe just another alternative to think about

It's a 'dustbin diagnosis' when they've run out of tests and ideas. Sorry x

Thanks. It very much comes in waves. I can be OK for a couple of weeks and then something triggers a "flare".

I'm just very reluctant to tell people that I "have fibromyalgia". There's all the meme stuff which doesn't help, and even the NHS website is so vague it just sounds like it's made up.

I’m sorry to disagree but there is treatment, 10 years ago I was in a wheelchair could only walk 100 metres with 2 sticks I had CFs and fibro for a decade and was told that there was nothing more they could do

Prior to this I was a health care professional with a busy life

Now I can walk freely without a walking stick, it’s been hard, I walk a tight rope but it CAN be done

Almost all sufferers are deficient in Vit D B12 iron magnesium and zinc, many have underlying gluten sensitivity or hidden sero negative coeliac disease and bacterial overgrowth in the gut

It requires a careful approach that modern sticking plaster medicine just refuses to engage with

Your choice is to be a victim and say no or stop being a passenger and take control of your life

As I say it’s ultimately down to you, whilst you’re reading look at Methylation as many fibro sufferers are also found to have one or even two faulty copies of the MTHFR gene which reduces methylation by 30-70% .

All of this leads to the inflammatory response which leads to pain, something I once specialised in!

Can you do anything about the reduction in Methylation Tomnook?

Bandino you have to ensue that vitamins going into your body are already broken down below the level of methylation for example

B12 can be taken as cyanocobalamin or hydroxycobalamin this is usually broken down to methylcobalamine but if you have a faulty gene you need to take the broken down form directly ie methylcobalamin

But In order to absorb B12 you also need adequate levels of other vitamins eg folate. Most people take the non methylated form folic acid however if you can’t methylate properly it just blocks the receptors but if you take folate then you will absorb it and thus be able to utilise the B12

Hope this just gives you an idea of the problem, you need someone who really understands nutrition and malabsorption with its associated deficiencies

My blood test results were horrific towards the end, I was classed as profoundly deficient in all vitamins and it’s taken time to rebuild my stores but it can be done

I would say it is your hypermobility. Fibro is a cop out diagnosis. I have it and have had it all my life. There have been three major flare ups, some lasting years and all led by hormone changes - teens, pregnancy and then the pill. Every doctor I have seen has been adamant that hormones have nothing to do with it. Funny though because I was horrendous on a particular pill, came off it for several years, was horrendous then too, went back on a pill, things got even worse, went on a very low dose combi pill and I'm like a different woman. The only flare ups now are not getting enough rest at night and if I've been stood for long periods. Sometimes on my pill break I can suffer, but it is usually caused by one of the above.
Pain is exhausting and those painkillers you are on are doing sweet FA to help. They had me on 17 pills a day at one point and I was still in pain.

Thank you. I'll read more about that.

I have CFS/FM and also Ehlers Danlos.

I'm not personally concerned about what other people may make of the diagnosis, as I really don't care what they think. Many people who have opinions about it don't even know what they're talking about.

What matters is you, how you feel and whether doctors are taking your issues seriously.

I took amitriptylene and it gave me heart arrhythmia (known side effect) so I would avoid that personally. It didn't do anything for the pain so I may as well have not bothered.

Trauma is not an uncommon as trigger for any kind of illness from the mild to the severe, so I think that's a valid theory.

I've tried many many things over the years both conventional and complemtary medicine and from experience I'd say it's really worth addressing the trauma and working through that. PTSD can be treated on the NHS for example. For the pain I found deep tissue massage, cranial ostepahthy (no clicks just manipulation) and acupuncture the most effective.

Everyone on here saying Fibromyalgia is a dustbin diagnosis are just continuing to perpetuate outdated baseless opinions that negatively affect sufferers. That is not helping anybody.

Times have moved on "The general consensus is that fibromyalgia is the result of a hypersensitive and hyperactive central nervous system, with the brain and spinal cord having developed heightened pain activity." This has been observed in fibro suffers - brain scans can reveal an abnormal pain response to stimuli.

www.medicinenet.com/script/main/art.asp?articlekey=174980

www.ncbi.nlm.nih.gov/pmc/articles/PMC3258006/

I have the personal belief that Fibomyalgia is the bodies way of overreacting to pain - but there had to be an initial cause for that pain, which for you is the Hypermobility.

Hypermobility/EDS causes severe fatigue, and all kinds of other related pains like numbness, pins and needles etc.

When the brain is overrun with pain is becomes over sensitive and basically shoots off even more pain signals, as sohypnotic just explained above. There is also studies to show those with fibro have more pain nerve endings than others.

But to me there is always a route cause. For some an original injury, others connective tissue disorders, some it could be trauma.

While I have a diagnosis of Fibro I only ever mention EDS to doctors as that’s the cause of everything else for me.

I tend to agree that it's often not a "real" diagnosis, in the sense that it's just the name that is given to a certain group of symptoms. But it's not even all that clear that it's one thing in the different people diagnosed.

That being said, many diseases are or have been diagnosed that way before they were well understood. Sometimes the diagnosis is refined over time too.

There are any number of diseases which some thing may be grouped symptoms that don't properly all belong together, so it could be the case with this too.

Bt maybe the best approach is to look at it from the POV, what use to you is that diagnosis? Can it help you get treatment, or in dealing with getting your job to take it seriously? Or do you think it will prevent continuing to look for a real cause? If you thin on balance it will be helpful or harmful you can choose to accept it or not.

Ultimately, many medical problems we simply don't have answers for, which s frustrating. It can be difficult to become comfortable with the possibility that maybe medical science has a limited ability to understand or help us with out problems. But sometimes that is just the truth.

I think you are right to be sceptical, but obviously this is based on my own experience only. I've come to the conclusion that for some rheumatologists, it's the GP equivalent of 'it's a virus' when they don't know what it is.

When I was being tested for lupus and my bloods weren't paying ball, he said he'd test one more then he'd be looking at diagnosing FM, despite me having no symotoms that fit this diagnosis. The tests came back positive for lupus. If they hadn't, I'd be stuck with a FM diagnosis with every flare up causing / previously causing organ damage. It horrifies me.

So it could be FM of course, but depending on your rheumatologist, it could be a case of a sticking plaster diagnosis.

It's reassuring that other tests have come back negative, and a diagnosis is only useful in terms of treatment. So, there's little you can do, apart from manage (and log I would advise) symptoms. See what triggers what in terms of food/ activities/ stress etc, and see if you can detect a pattern, that always helps. Managing the symptoms is, regardless of diagnosis, usually a combination of meds and lifestyle changes.

Is take it for now, as that's where you are, and learn to manage it. But note any odd symptoms etc that don't fit. You never know when this may be handy in the future.

"Here’s my issue - what IS fibromyalgia? It seems to be just a description of symptoms. What is the cause? "

It is and no one knows yet.

I mean just think you've got pain in a muscle now how in anyones name are you going to test whats happening in those nerves?

Microscopic glass probably to measure chemical concentration and changes but I doubt it.

Hundreds of tissue biopsies during pain and in its absence and try to find a difference?

I mean how do you even start taking the first step to find the "real" cause when that cause can be a few protons mixed in with trillions of others inside a tissue structure so delicate to touch it changes it

Thanks. When I read descriptions of symptoms by other people who've been diagnosed with fibromyalgia, a lot of it does seem familiar and a lot of the things that are recommended for fibromyalgia (e.g. trigger point release) do help me.

I don't have a problem with the idea that it's associated with mental health problems/trauma. I'm sure it is. I actually already see a clinical psychologist for my mental health problems and she thinks there's a connection too. The pain is real, though!

I wouldn't say it's associated with mental health problems.

It's simply that trauma and stress can be a trigger for many health conditions from diabetes to heart attacks. That doesn't mean the illness is not a physical one or that it's not real or "all in the mind".

Also - anyone who has a chronic illness and a lot to deal with and anything that can lighten the load is helpful.