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.

'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'

Yes, as a pp said it's the equivalent of a gp diagnosing a virus. In the absence of conclusive test results it seems the catch all phrase for chronic pain.

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

I would disagree, based just on my own experience as a clinician. I’ve seen many patients with fibromyalgia and I can say with reasonable confidence that every single one of them had a significant history of poor mental health, often pre-dating their diagnosis.

It’s a chicken and egg thing, though. Chronic pain can wreck your mental health. Mental health symptoms can present themselves physically (if they don’t, then tell me tears as a result of inner turmoil ‘aren’t real’ or ‘less genuine’ than another physical symptom with an organic cause).

It’s a profoundly debilitating condition.

@Tomnooktoldmeto thanks for all the useful info. I’m CFS/FM -not as severe as yourself but I’m desperate to feel better (6 yrs suffering so far) so will give methylcobalamin & methyl folate a try as injections at the GP surgery aren’t doing a thing.

Don't know whether you're a psychiatrist, in which case the patients will inevitably have poor mental health, or a rheumatologist, in which case you're not really qualified to evaluate mental health.

None of the people I've met with FM along the way had any obvious significant mental health problems. A few of them had experienced trauma previously, but that doesn't necessarily result in mental illness. I'd say 'every single one' is likely to be an exaggeration or not necessarily representative of the whole.

While it's true that mental health problems can manifest in physical symptoms it's true - e.g. stress and anxiety in pain, cramping, nausea, tachycardia etc; it is definitely not the case that FM is a physical symptom of any particular mental illness - whether depression or anxiety or serious mental illness such as BP or schizophrenia.

Some people have mental and physical illness; some people with physical illnesses no obvious cause find them labelled 'psychological' in origin - which may or may not be correct. This has happened to 2 people I know, both doctors, one of whom eventually turned out to have MS and the other to have cancer.

The problem when you have fibro is that anything and everything gets blamed on it. I was diagnosed with fibro at 21 and EDS at 25.

I am on the cusp of a psoriatic arthritis diagnosis following ultrasounds which revealed severe inflammation. When my GP referred me to Rheumatology last year on the basis of swollen joints coupled with fingernail pitting and onycholosis in every toe nail Rheumatology refused to see me as 'she already has a diagnosis of fibromyalgia'. My physiotherapist and GP pushed back and a good job too!

I agree with the majority on here, Fibro is often diagnosed when they have no idea what the symptoms can be and the patient is persistent in getting a diagnosis/label.

When we get a patient with a fibro diagnosis we all roll our eyes and inwardly groan. On the whole they are difficult and demanding. Obviously not all of them before I start getting slated.

I can promise you Dalmatian that I’m neither difficult nor demanding and actually suffer pain silently, but thanks for that opinion - I’m sure it made all with a fibro diagnosis who read that feel tremendous and not remotely belittled.

For the PP who mentioned how every single patient had significant mental health difficulties - I don’t. So here’s one to break your stride.

If I’d listened to people like Elphaba I would be dead right now

Let’s be clear some people with fibromyalgia will have mental health issues, some will develop them DUE to fibromyalgia BUT. Fibromyalgia is NOT a condition of the mental health type much as certain clinician would like you to believe

Graded exercise and CBT might have helped me cope with CFS and fibromyalgia but certainly would NOT have cured it

Left on that path 10 years ago I was in a wheelchair and told nothing more could be done for me

Funnily enough when I found the right help, and my massive vitamin and mineral deficiencies were discovered due to an underlying malabsorption that wasn’t easily diagnosed due to immunodeficiency I rapidly improved

Oh and before you start picking away because you’re a professional funnily enough so am I

CFS, ED, hyper mobility, coeliac disease are all inter related and are part of the immune family conditions

Modern medicine very much has the approach of sticking plaster medicine and rarely goes looking for the actual cause, they don’t even teach medical students about vitamin deficiencies in their training and about vitamins role in pain modulation

As for mental health professionals who are basically saying that if you’re in pain it’s all your own fault, would you accept being blamed for having cancer?

Have you had your calcium levels checked? Your symptoms are all from primary hyperPARAthyroidism (amongst other things), worth checking.

Dalmatian, perhaps if you opened your closed mind you might actually help your patients with Fibro instead of judge!

Go do some self directed learning, look at MTHFR and vitamins role it might just surprise you, the interplay of auto immune conditions in Fibromyalgia myalgia is astounding and can’t easily be dismissed

But most of all, if you have nothing supportive to say to someone looking for help the begger off to your sneering clinic and get your box of plasters out

www.health.harvard.edu/diseases-and-conditions/new-thinking-on-peripheral-neuropathy

Hope these links are helpful.

It’s a shame people are so negative about FM. I was diagnosed it alongside and at the same time as an autoimmune condition, which in itself seems to have the very similar symptoms.

I didn’t have mental health issues back then although long term bereavement has undoubtedly caused some since.

I’ve have found my fatigue and pain more manageable by doing various things. Even simple changes like switching from a manual to an automatic car helped.

The thing is what is a 'proper diagnosis'?

A diagnosis is just a label when it comes down to it. It can be useful for grouping people with certain symptoms together so that research can be done on things like prognosis and treatments but in real life it may not be very useful to an individual person.

There are many diagnoses in medicine for which there is no definitive test and for which no biological mechanism is yet understood. They are just a constellation of symptoms.
As such they might be more or less accurate.

Schizophrenia was described very accurately as a clinical syndrome many years before we had any idea that dopamine was involved or antipsychotics were invented. Alzheimer's disease was the clinical syndrome of 'dementia praecox' well before plaques and tangles were found in the brains of sufferers.
Other clinical syndromes haven't stood up over time and been found to have common pathology.

So if fibromyalgia is useful as a label to you then accept it and if it's not then you don't have to.
It's no more 'dustbin' than a lot of other things. It may just be that the mechanisms aren't fully understood as yet.

It is frustrating that your symptoms cannot be fully explained in a way that you find satisfactory but it doesn't mean anything has been missed necessarily or that it's being implied 'it's all in your head'. It just means that not all things are fully explicable on a mechanistic basis by medicine as yet.

Medicine proceeds on a 'rule out' basis largely. We try to rule in or out causes for symptoms with the most serious first. Once everything that's likely and maybe rarer serious things have been ruled out symptoms may remain but it is not possible to ascribe an exact cause to everything.

The overwhelming likelihood is that you do have fibromyalgia in the sense that your constellation of symptoms fits with that according to a presumably competent specialist.
Whether you choose to see it as a consequence of hypermobility and keep that label and not the fibro one is up to you. It's what explanation helps you and you find valuable that matters really. Many many diagnoses are open to interpretation and have less relationship to hard facts than people might like to believe.

Hypertension or diabetes- depends what cut off Drs decide is pathological for BP or blood glucose. It has changed over the years.
ADHD, autism- they are real things but there isn't a blood test for them. It's a Drs opinion if you have that diagnosis or not. Drs in the US diagnose these more often than U.K. Drs.

You could ask for a second opinion if you have a reason to think your Dr missed something but the chances of a rare diagnosis being found to explain it all are very small. Even on that diagnosis detectives series it made me laugh that they nearly all turned out to have pretty mainstream stuff in the end that anyone could diagnose within 5 minutes (PCOS was one obvious one) despite the weird and wonderful things that were considered. They couldn't find enough people for a full series with actually mysterious things. Common things are common as they said at medical school.

Well, my fibromyalgia diagnosis turned out to be hypothyroidism.

NHS did not do the relevant tests. Turns out I can't convert thyroid hormones to the active form needed by every cell in the body.

But no, according to the NHS there was nothing amiss with my thyroid at all

Pisses me off.

Having read more of the thread a lot of people do seem to be expecting a lot from medicine that it cannot give. It cannot explain everyone's symptoms all of the time.

Not all symptoms are diagnosable in the sense of an exact mechanistic explanation with our current state of knowledge. They may be someday as science moves on. We had to wait for molecular biology to understand that schizophrenia is due to errors in dopamine metabolism and not 'refrigerator mothers'

We don't know yet what fibromyalgia is. All we know is that it is a pattern of symptoms that a number of people have so plausibly there is a common cause that we don't know yet. There will be wrong theories of fibromyalgia before we find the right one.

Having endless investigations trying to find a rare cause that probably doesn't exist isn't helpful.

It's a Drs opinion if you have that diagnosis or not. Drs in the US diagnose these more often than U.K. Drs.

No, this is not true. I have experience of both healthcare systems. I love the NHS but it has very serious problems when it comes to chronic conditions, and you can multiply that by 100 if they are issues that affect women more typically than men.

In a 45 minute appointment with my thyroid endocrinologist here in NYC he had listened to my symptoms and case history (relevant especially because I already have type 1 diabetes, and autoimmune conditions often like to hunt in groups) actually felt my neck (which no doctor in the NHS ever did) and did an ultrasound which showed my thyroid nodules. He then ran a full blood panel.

He didn't just arrive at the diagnosis by way of his opinion with no evidence. What he did do, in addition to running the relevant tests, is listen to me and draw upon the extensive breadth of experience of working in endocrinology for about 40 years.

We don't know yet what fibromyalgia is. All we know is that it is a pattern of symptoms that a number of people have so plausibly there is a common cause that we don't know yet. There will be wrong theories of fibromyalgia before we find the right one.

It has a neurological aetiology that involves the nervous system, this has been established. The processes behind this are still being investigated, but it is fundamentally a nervous system disorder. I imagine the fact that it disproportionately affects women over men is why it is belittled to the extent it is by some.

The phrase you quoted was specifically in relation to autism and ADHD which are diagnosed at higher rates by US Drs. Whether the U.K. under diagnoses or the US over diagnoses is completely a matter of subjective opinion as there are no bio markers to test.

Thyroid disease in US vs UK I have no idea and did not claim to. I make no comment on your personal experience with that at all.

I will say that it is obvious that Drs in US private practice will indeed have more time and more money to run more tests than the NHS does. Stands to reason. Not a surprise. The NHS is about sharing resources fairly amongst the many and there is rationing to achieve that. Some things will be missed due to that but more people will be able to have care free at the point of use so the populations health will be better.
Carry on voting Tory to dismantle it if you disagree I guess.

Over diagnosis and over investigation is also harmful. There are false positive rates of all tests and if you do enough tests eventually one will come up positive or abnormalities can be uncovered that have nothing to do with any symptoms and don't need treating.

I will say that it is obvious that Drs in US private practice will indeed have more time and more money to run more tests than the NHS does. Stands to reason. Not a surprise. The NHS is about sharing resources fairly amongst the many and there is rationing to achieve that. Some things will be missed due to that but more people will be able to have care free at the point of use so the populations health will be better.

Bullshit.

The UK and the NHS is capable of doing far, far better in women's health. I am an advocate for high quality universal healthcare (which no, we don't have in the United States). You have clearly been hoodwinked into believing that the current NHS standard must be the best it can do in all fields, which has led to a misplaced gratitude across the board for all the NHS services - even when they are unacceptably poor.

Forgive me if I don't tug my forelock in appreciation at being catastrophically let down by the 'rationing' of the NHS across endocrinology and gynaecology.

Oh and I'd rather pull out my own teeth with pliers than vote Tory, so we probably agree on one point

CovoidOfAll
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'Having endless investigations trying to find a rare cause that probably doesn't exist isn't helpful.'*

It is helpful if you do have a rare fatal disease. I'm glad I persisted with my diagnosis, I had to see many specialists, over years.!

Common things are common, but rare diseases are collectively very common, 1 in 17! people will get one.

So Covoid I should not have wasted resources and quietly died? Many rare diseases do require extensive investigations, to exclude more common causes.

There was an episode of diagnosis detectives (bbc) where the patient had really similar symptoms as you and I think she was diagnosed with a hyper mobility thing in the end but it was fascinating as she went round different specialists on the show.

She had spent years trying to get a diagnosis and couldn’t walk much. See if you can find it on catch-up as i think the treatment was stretching exercises which you may find useful.
This is from a total non-medical professional after watching a TV show but strengthening the muscles with stretches surely can’t make it worse.

But when do you call time on the search? I'm glad it worked out for you but for many other people it's just an endless pointless quest for an answer that isn't coming.

I can't agree with a view that all symptoms have a diagnosis and a complete biological explanation within the current reach of medicine if only Drs tried hard enough. That isn't realistic. Some things will always be unexplained.

Found the episode, this is the condition she was diagnosed with Ehlers-Danlos syndrome