A couple of months ago I was given a diagnosis of hypermobility syndrome and fibromyalgia after several years of trying to find out what was causing my various symptoms. Fibromyalgia had been brought up but then rejected in the past because of not reacting to pressure on certain points (and I still don't). In truth I'm not sure why I've been given a diagnosis of fibromyalgia. I didn't really know anything about hypermobility syndrome but after reading about it it makes sense and answers many questions. Apparently people with hypermobility syndrome often are misdiagnosed with other conditions including fibromyalgia. There are specific criteria which lead to a diagnosis and it can be checked easily and diagnosed by a G.P. using the Beighton score and the Brighton Criteria. This also diagnoses Ehlers Danlos Syndrome Hypermobility type which some people consider to be the same thing. Treatment isn't dissimilar to Fibromyalgia or CFS but knowing why certain symptoms are experienced is helpful and easier to deal with. This isn't so much a question but something to consider.
Misdiagnosis?: A couple of months ago I... - Fibromyalgia Acti...
Misdiagnosis?
It's possible to have diagnosis of both x
Thanks. What I wonder though is because of the huge overlap in symptoms I don't quite understand why I need a diagnosis of both. Wouldn't just the hypermobility syndrome diagnosis cover it or was the rheumatologist just being thorough. I've just started physio for the hypermobility and she mentioned group sessions for dealing with fibro so maybe it is to do with accessing treatment.
Eds is a differential diagnosis for fibro. But you mention not responding to pressure on certain points. Tender point test is less relevant nowadays and more and more it is no longer part of the diagnostic process
Yes I've read that and I think depending on which doctor you see they differ in how they diagnose but that is more up to date thinking.
education and change in practice takes time. Also moving away from a test where a patient is expecting a physical exam and comforted by it makes it harder. But with the tender point test males particularly were not getting diagnosed when they were short a couple of points on the scale but they still had all the symptoms.
so the criteria changed for the better.
My Daughter has both.
I have both. Is there any cure?
Not as far as I know. I've been given exercises to do with the aim of strengthening muscles which are "deconditioned". I'm not sure if my leg weakness is due to deconditioning or something else but I will do what has been suggested to see if it helps.
Stretching caused terrible pain in my back. It May be dangerous for the joints that are already flexible.
I believe i have both - but no follow up here, so no diagnosis but in such pain constantly.
I'm sorry to hear that. In terms of treatment it seems to be painkillers, antidepressants which help with pain and exercise. I am surprised I was offered physio but I think it will be a few sessions at most and it will be up to me to keep up with exercises on my own. I am thinking of joining a gym to do swimming but the expense and getting there regularly to make it worthwhile puts me off.
I was diagnosed with fibromyalgia by a rheumatologist, but when having a massage I was told by the lady masseuse that I appeared to have hyper mobility too. So I think they can come along together.
I’m trying to understand what fibromyalgia is exactly
Everyone can experience slightly different symptoms. Usually there are particular tender spots that a rheumatologist will check out for you. Pain across the body generally, burning pain in the joints, muscles, fatigue, headaches, vision problems can all be Fibromyalgia symptoms.
It is best to see a GP and get a referral to a rheumatologist.
Ok thank you I will try to go to the doctor about it. I went to the doctor about pain when I was little but they didn’t know what was wrong. What symptoms do you have?
It’s difficult for me to explain which of my symptoms relate to the fibromyalgia as I also have under active thyroid and pernicious anaemia.
Generally speaking I had a lot of pain, feeling as though I was bruised. I used to wake in the morning and tell my husband that a herd of wildebeest had trampled me in the night! It was the only way I could think of describing it. I felt very tired, as though my sleep had done nothing to help. I had mental confusion (foggy brain), balance problems.
Is that helpful?
I have hypermobility (diagnosed over 25 years ago), fibromyalgia (diagnosed 2 years ago) and ankylosing spondylitis (recently diagnosed). It is possible to have many issues that can overlap massively. I urge you to keep pressing your gp to see a specialist as autoimmune conditions can and will progress so it's better to get treatment early. I would have been dismissed without a full diagnosis if I hadn't been a pain to my gp and I'm so glad I did! I start my proper treatment in a week and am receiving specialist physio.
It could well be that your symptoms are caused by hypermobility and fibro, but after my experience (I have evidence of very early damage to my hips joints, pelvis and lower back along with significant swelling in that area and my knees caused by the autoimmune issue), I would say get it checked out thoroughly and dont just let them label you because it's easy for them xxx
I have had a positive rheumatoid factor blood result for several years but because I don't usually have any swollen joints I was told I don't have rheumatoid arthritis. Since seeing the rheumatologist one of my knees has swollen up a few times so I will definitely return if it continues.
Hi Taurea
after nearly a year with getting pains pretty much everywhere i got see a Rheumatology i had not been in there more than 10 mins she checked my leg movements which gave me a pain just in my back above my hips nothing to bad at the time. she said you have Fibromyalgia so i had already read about it on versus arthritis website although they have similar symptoms its not the same so i have had no blood test or scans.so how can she say that i have fibro just from 10 mins consultation i am not say that i have not got fibro but i have had 4 major operations in 4 years 1 was for a tumor under my eye. the thing is that major trauma can set Fibromyalgia off .but also getting the all clear from my cancer in 2016 .that also i am getting pains in my fingers and if i press the bones in arms and legs the hurt . so also with pain it can be symptoms for bone cancer.so i have got appointment with another doc this saturday to express my concerns of a misdiagnosis . because last time when i said to one doctor about my headaches he said it s all in my mind then by chance i had a MRI scan on my head which found my tumor so i think she is guessing but just writing this with pains in fingers ect . anyway .is this a question .but i know its something to consider. but i have pains in my finger joints .and sometimes in morning trying shave or brush my teeth i cant lift my arms without pains in my shoulder so who no,s i just feel like i have been fobbed off.
It does seem worrying that even with a history of serious illness like you have, a doctor will make a diagnosis of fibromyalgia without ruling other things out. On the other hand as you say your illnesses could have triggered fibromyalgia. I don't blame you for feeling fobbed off.
yes the trouble is i have worked through all my illnesses until having another last year then the pains started 100% worse stopping me. luckily for me i was at the local job centre when the local council was there and took me on part time with funding from the DWP helping me with my conditions so i get out and not stuck at home in pain but like you everyone have different pains but suffer in the same way.like now serious pains in my toe,s but what causes it .?
Hypermobility syndrome and fibromyalgia are two different things and within each there is a spectrum of difficulties. They are also linked on a genetic basis-for example someone in a family could have fibromyalgia and mild symptoms of hypermobility syndrome and their sister could have hypermobility but no fibromyalgia and their child could have no fibromyalgia but even worse hypermobility and so they can can co-occur. As you said, hypermobility syndrome can be easily recognized and diagnosed if one realises that a syndrome means pain and hypermobility means overly flexible joints and it is different to fibromyalgia in a few ways. Does anyone know where there’s a forum on health unlocked for hypermobility syndrome?
There is one for EDS - Ehlers Danlos Syndrome. Because EDS hypermobility type (which is the most common) is considered to be the same as hypermobility syndrome by most experts, both terms are often used interchangeably. I’m in the EDS group but it’s relatively quiet compared to the fibromyalgia one.
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