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.

Fibromyalgia is a diagnosis of exclusion- it's basically medical professionals saying 'we can't find a diagnosable source of the pain'. It sounds much more likely that your pain is from the hypermobility condition (things like Ehlers-Danlos can get worse) and herniated spinal disc.

I would not accept the Fibromyalgia diagnosis in your shoes.

@garlictwist

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.

Yeah I've heard this too.

It's basically a catch-all for undiagnosed pain. Disorders and diseases have specific clinical features whereas 'fibromyalgia' is 'we have no idea what this pain is!'. If you get diagnosed with it, it's worth pushing for a true diagnosis because there are people with lots of different treatable conditions who receive the diagnosis when they could be diagnosed if they were referred to the right specialist.

Op I have Fibro and it's not "made up", nor is it a mental health condition although it CAN be trauma triggered, the pain is real. There's loads of information out there online if you really want to learn about Firo.
I am in a fairly long period of remission although I do still have periods of disrupted sleep and manageable joint pain. Pregabalin was a godsend for me, as was getting a gentle exercise routine in place

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.

Is anyone saying that on this thread? If so I have missed their post?

However, there is a tendency to either entirely dismiss certain symptoms out of hand, or to follow a fruitless yet expensive pathway that solves nothing. Women more frequently than men get the shitty end of the stick.

The blood test that confirmed my thyroid condition was very simple, and yet nobody in the NHS (no GP I saw, nor my diabetes endo) requested it. In the GP's case I think because certain blood tests get flagged up and possibly denied by the lab. Instead I was referred to a pain clinic for fibromyalgia. What a waste of resources.

It is completely illogical and creates obstacles for doctors to do their job.

Likewise, there is no real reason to have certain NHS systems such as a gatekeeping GP to refer you to a consultant, then an appointment with the consultant, then a further appointment for taking an ultrasound. Again, it's an unforgivable lack of efficiency and waste of resources.

So, sure, some things will always be unexplained. At the same time many medical issues do not remain a mystery with appropriate investigation.

It's really unethical to expect people to lie down and accept shoddy, patchy healthcare, and then to accept the life-limiting or life-changing consequences of that.

I just looked up the 1 in 17 thing because it sounded alarming that there could be so many people walking around with rare, hard to diagnose stuff but having googled and read the website I am less alarmed.

I have heard of all but one of the diseases mentioned in their case studies. They might be uncommon numerically but many would be things the general public have heard of eg haemophilia and sickle cell are examples on the website

Also rare is not the same as hard to diagnose. Tuberous sclerosis and Hunters syndrome are on there as rare but they would be very easy to diagnose with classic symptoms and signs and biomarker tests.

The combination of something rare and also hard to diagnose is the thing that Drs and patients with unexplained symptoms have to struggle with and of course there is always the possibility of missing a rare thing but at some point the probability is so small that ordering more tests and seeing more specialists isn't likely to yield an explanation.

Covoid

Yes, rare is 1 in 2000 patients, which isn't
that rare.

Mine was around 10 in a million.
I was only going to give up when I was dead, and told DH to push for a PM-I just knew.
Medics4RareDisease is worth a read. Their education campaigns #daretothinkrare and raredisease101
aims to help doctors who can't be expected to know every disease, to target investigations and referrals effectively.

I am sorry that your condition was not diagnosed but I don't think you can extrapolate from that experience to this being a very common failing in the whole NHS.

Of course I do not think the NHS gives perfect service all the time. Of course I want it to improve. I think it has its flaws as all health systems do but the fundamental principle of healthcare free at the point of care to all according to need is a very important one and a degree of rationing is the logical consequence of that. It would not be possible to have self referral to any specialist and for any investigation without more cost.

There is absolutely a need to gatekeep access to consultants via GP referral. There is not enough resource for everyone who fancies seeing a particular specialist to see one. Also would all patients definitely know which specialist they needed to see or would time be wasted going to the wrong ones. This is something I have known people to waste a lot of money on in private practice.

There is also a need for the specialist to gatekeep access to the investigations and decide which investigations are in fact necessary. Should everyone just be able to decide to have a full body CT if they fancy it? The radiation dose alone is a reason not to do this.

Post below was for absentmindedwoman

I am sorry that your condition was not diagnosed but I don't think you can extrapolate from that experience to this being a very common failing in the whole NHS.

I am involved in patient advocacy in myriad ways and I can assure you that it is sadly, all too common.

There is absolutely a need to gatekeep access to consultants via GP referral.

I disagree. GP gatekeeping leads to poorer outcomes.

There is not enough resource for everyone who fancies seeing a particular specialist to see one

There is appalling waste of resources in the NHS. Until they're not being spunked up the wall with such gay abandon, it's hard to even see exactly what resources are available and how they could be used most sensibly.

Also would all patients definitely know which specialist they needed to see or would time be wasted going to the wrong ones. This is something I have known people to waste a lot of money on in private practice.

Yes I agree very much that people need a good GP they can go to and put their trust in that they will act in their best interests, to the best of their professional capability. But still we have droves of patients who are completely failed by GPs - either like the GP who told me "endometriosis is normal for women!" or because they're great doctors, but with their hands tied by the system. So how do we fix this?

There is also a need for the specialist to gatekeep access to the investigations and decide which investigations are in fact necessary. Should everyone just be able to decide to have a full body CT if they fancy it? The radiation dose alone is a reason not to do this.

No. Of course not. But if you are at an appointment with a consultant who deems it wise for you to have an ultrasound, then you should be able to have one at that same appointment. There is no logical reason for the back-and-forth multiple appointments.

I've had two breast lumps dealt with very efficiently on the NHS that demonstrate this - in to see the consultant who performs an examination, ultrasound immediately afterwards, back into the room for the consultant to explain the findings. Excellent.

The reason a breast clinic can be a 'one stop shop' is because it's a common condition with a clearly defined investigation pathway. All the people at that clinic have a breast lump with a need to exclude cancer. Nearly all those women will need a mammogram and an US guided biopsy so it makes sense to have the resource pre allocated.

It's not possible to have a clinic like that with a dedicated investigation resource for all conditions. If they had a guarantee that you could go straight for a scan from any clinic appt then that scanner would have to be sitting empty some of the time in order to fit in same day walk in clinic referrals because the referral rate would not be predictable like a breast clinic. Lots of people in a general neuro clinic don't need a CT or an MRI. Lots of people in a general medical clinic don't need any scans.

Also US is quick, safe, portable, instantly interpretable, takes one person to operate and fairly cheap whereas a CT or an MRI scanner are none of those things. One clinic can't have its own dedicated MRI scanner with walk in access. The scanner appts need to be booked separately to ensure the resource is efficiently used. Crap from a patient experience POV but overall efficient resource use.

@GetOffYourHighHorse

'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 couldn't agree more. I have RA and my rheumatologist says I have fibromyalgia as well. I absolutely refute this, I think it's just a lazy label for a bunch of symptoms, all of which are explained by my RA.

It's not possible to have a clinic like that with a dedicated investigation resource for all conditions.

Obviously. Look, you're missing the point. It's not just about the breast clinic, I was simply giving an example of joined up thinking in the NHS - they can do it very well at times.

It's about the whole attitude. It's about the pointless and upsetting obfuscating and delaying that often happens, multiple visits to multiple GPs until you are taken seriously if you have a condition like fibro, or like a wonky thyroid or like endometriosis.

It's about the reason why, for example, my GP just didn't order the thyroid test for me which would have uncovered the problem.

Women with endo take on average about 7 years to get a diagnosis. It's not even a rare condition, it's just one that is dismissed as not terribly important. Sorry, that is completely unacceptable.

A large chunk of the rationale behind the decision making in these contexts is not patient-centred and it has little to do with resources or budgets either. You are very naive if you think those resources are being used in the best and most efficient way.

The status quo is out of date and not really fit for purpose and I'm not quite sure why you seem to have such dogmatic faith in it - but I'd be willing to hazard a guess that you (or a loved one) has never been at the sharp end of NHS bullshit.

There needs to be a whole reconfiguration of the NHS to get rid of the structural problems. One of those problems being medical misogyny.

@CovoidOfAllHumanity

The reason a breast clinic can be a 'one stop shop' is because it's a common condition with a clearly defined investigation pathway. All the people at that clinic have a breast lump with a need to exclude cancer. Nearly all those women will need a mammogram and an US guided biopsy so it makes sense to have the resource pre allocated.

It's not possible to have a clinic like that with a dedicated investigation resource for all conditions. If they had a guarantee that you could go straight for a scan from any clinic appt then that scanner would have to be sitting empty some of the time in order to fit in same day walk in clinic referrals because the referral rate would not be predictable like a breast clinic. Lots of people in a general neuro clinic don't need a CT or an MRI. Lots of people in a general medical clinic don't need any scans.

Also US is quick, safe, portable, instantly interpretable, takes one person to operate and fairly cheap whereas a CT or an MRI scanner are none of those things. One clinic can't have its own dedicated MRI scanner with walk in access. The scanner appts need to be booked separately to ensure the resource is efficiently used. Crap from a patient experience POV but overall efficient resource use.

Totally agree with your post and this is off-point but not everyone goes to a breast clinic with a lump- there are various other presentations of possible breast cancer (e.g. skin dimpling, rashes etc.)

I was born with Epidermolysis Bullosa Simplex and wasn't diagnosed until 26, my symptoms (blistering on feet, hands and in my mouth) were initially attributed to eczema and mouth ulcers.

EB is rare - there's about 5,000 of us in the UK. Sometimes people do have rare conditions which need considering and I investigating. It took me going to my GP with bleeding feet due to 16 blisters across them to get someone to medical to think 'this isn't normal' at which point I was referred to dermatology who quickly referred me to a geneticist who did a DNA test and found the dodgy gene.

I now have much better treatment such as access to a specialised podiatrist and specialist dressings, plus reasonable adjustments at work and my quality of life has improved.

I also have fibro and am hypermobile. It's a horrible condition. I believe one day fibromyalgia will be better defined or split into several conditions. I also think once you have the diagnosis it can mask other conditions as symptoms are attributed to fibro and may not be investigated as a result.

I am so sorry that you are having such a difficult time. I have hyper mobile syndrome and I am at the top end of the scale. I am potentially HMEDS but given the diagnosis is difficult between that and HMS, and there is no treatment difference it doesn’t really make a difference and I am not pursuing through a specialist.

I am lying in bed following foot surgery to fuse and stabilise my foot (had the other one done before and despite the fairly awful recovery it is so worth it). I wanted to share a recent experience.

Since my 30s I have had swelling, mainly in my legs but basically all over. It developed in severity overtime and I also had sore points all over my body. I think the sore points was previously a diagnostic marker for FM? I have lots of arthritis in multiple joints but tests in 2014 confirmed it was bio mechanical due to joint instability rather than rheumatic (doc wanted to check). I have also had hypothyroidism since my 20s, so autoimmune disease.

Getting to the point, now in my 50s I have been in progressive, chronic pain for years and have to move lots to manage pain in my spine (spondylosis I am told). All got too much and had a good chat with new Dr at practice about the overall state of me as it is overwhelming. I felt like I was crumbling and old before my time. She started me on Naproxen as a base with paracetamol morning and night, which I can escalate and also replace with cocodamol as required. A pain management overhaul.

2 days in to naproxen and the swelling of over a decade disappeared as did the sore points. It feels like every joint in my body has been oiled! I feel 10 years younger despite all the arthritis. I have had an inflammatory component that we did not know about. No idea what and given covid the dr and I agreed to not pursuing a more detailed diagnosis at this time as it is being managed. I am optimistic that I will be able to actively improve my fitness and mobility post surgery and do things again that I thought I would never be able to do again.

I realise that this is all very specific to me but thought it might give you hope for improvement. A few months ago I felt hopeless. Now, despite me being off the naproxen post surgery for a couple of months, I feel positive. I hope this might help you.
Big hug.

I've got mild, undiagnosed EDS. For some reason, the NHS is going through a phase of being reluctant to diagnose EDS so I've been referred to orthopaedics, who deny that anything has dislocated because by the time I see them, it has resolved!

Now, obviously it's not normal to be able to bend yiur fingers back so that they touch the back of your hand, or to do weird things with your toes. But I'm convinced that osteoarthritis in joints make them more prone to micro dislocations. It's a dreadful sensation. My problem is with my knees - a couple of times one of my knees has suddenly been unable to bear any weight for no good reason, then after a week or so there's a horrendously loud crack, sharp pain and after that, it gets better.

Try seeing a good osteopath regularly who can make sure everything is in the right place. I have very strong muscles, so I'm convinced that helps. EDS makes your collagen different - do you have anyone else in yiur family with it, or even who looks unusually young (less prone to wrinkles)?

I’d love the details of that physiotherapist. How could I contact you for them?

Have a look at Mast Cell Activation Disorder as it's often misdiagnosed as Fibromyalgia. Many links with EDS and hypermobility.

https://www.researchgate.net/publication/326426655IssItReallyyFibromyalgiaRecognizinggMastCelllActivationOrthostaticcTachycardiaanddHypermobility

You could try to identify what's causing the flares and whether antihistamines help settle them, even just a little. That would indicate a mast cell issue.

I was about to write something exactly along these lines. DD has various chronic illnesses including POTS, ME, MCAS and through a private doctor and genetic testing we have discovered that she has gene mutations that affect thyroid conversion and absorption in the brain. She's being treated with Levothyroxine and is currently on 500mcg a day and still titrating. She has monthly blood tests and ECG and still has no side effects (ie hyperthyroidism) from such a huge dose alongside what her thyroid already naturally produces. He believes that this neurological thyroid deficiency is the cause of the dysfunctioning nervous systems.

O M G. Thank you. Am going to try this for sure! I have been poisoned by a series of prescription drugs and had terrible quality of life for over a decade.

I usually take antihistamines in the spring / summer for hay fever symptoms but haven’t this year yet. I feel so much better in the summer and even better in the autumn. I then stop taking them in the winter because I have no need. And my health nose dives.

Can you tell me how long the antihistamines may take to work? Thanks.

Should be straightaway really. There are different kinds of antihistamines so experiment with them. And DD was prescribed 2 of the OTC ones twice a day so speak to the pharmacist about that as you can take more than it says on the packet. Plus look at what foods are high in histamine and read about the histamine bucket as it explains why one day can differ from another. It is a minefield tbh but there's lots of info out there. Unfortunately there's next to no help on the NHS. Good luck!

Ok great, thank you. I know it is possible to take 2 different sorts but loratadine doesn’t agree with me for example.

Anyone I've known with ME or CF is a high achiever - not necessarily a successful high achiever - just someone who pushes themselves as they have high expectations of themselves. That results in a stress which they, unconciiously, are trying to maintain. The stress hormones imv affect their health.

This

This is a common misconception of "diagnoses of exclusion", which are conditions that require certain other conditions to be excluded before you can consider them.