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Fibromyalgia Community
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hypermobility and fibromyalgia--related??

Hi, has anyone on here been diagnosed with both hypermobility syndrome and fibro? Have been told for years that I had fibro, went to physio testerday with knee pain, and after ding tests, she said I had hypermobility syndrome, My daughter who was there because of severe sciatica, was then tested, and told she had it too, apparently it's a genetic thing. I havn't heard of this before, and the physio seemed very surprised this had not been picked up on before now. I have had several spinal surgeries, and she told me this could be the reason, for my joint problems. Looked all this up online, and found it is often misdiagnosed as fibro--though you can have both.If anyone has this syndrome, I would like to know how best to deal wiyh it, in everyday life.
9 Responses
Avatar universal

Good question. I have hypermobility syndrome and have a diagnosis of Chronic Fatigue Syndrome. I know my CFS diagnosis is accurate... especially because I had CFS symptoms after having a severe case of mono when I was only a teenager.

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It does make you wonder, doesn't it? the physio did all the tests, and got a score of eight. I've never heard of hypermobility, thought it was normal to move like this--till I came home and watched in the mirror as my elbow bent backwards! I have all the criteria for fibro, she just said that you have more pain because the ligaments are lax, and the muscles have to do all the work. That explains a lot, the aching never goes--oh well, another string to add to my bow!
Avatar universal

Hi ! I had also never heard of hypermobility and after I was diagnosed (after how many years? LOL!) with this condition, I looked at the symptoms and realized that I never had any symptoms from this condition. They say that it normally gets better as you age.... but I never had joint pain when I was a child or even several years after my mono (CFS) diagnosis. So in my case... I don't believe this condition has affected me... at least not that I'm aware of.

Have you tried massage therapy ? I often get Tuina massages and highly recommend !
Avatar universal
Hi, no I havn't tried any kind of massage therapy, though over the years have tried just about everything else, for fibro and back pain. My main coping thing is to get to the swimming pool, and relax in the warm water-- only thing is, you have to get out and drive home, which is the difficult bit! I'm more concerned for my daughter, with the hypermobility thing, and after being told, that's what's probably caused a lot of my problems, just hope she doesn't have to go through the same things. I could never work, and my life has been so restricted, I would hate the same thing happening to her. Her sciatica is so bad, she is off work, and has her own house, so needs the money. I'm just keeping my fingers crossed. Thanks for your reply, it's good to know it hasn't affected you too much.
Avatar universal
OMG...and here I thought I was just very flexible!  Never heard of this until now and yes, I have it as well.

I just looked it up and it does state that this is something that can accompany FMS and CFS (or it can stand alone as its own dx).  
Avatar universal
Hi,Just wonder if it might be an idea to have a poll, on this forum, and see how many others are suffering, doubley--with both conditions, only thing is if they are like me, they might not know anyway! I could never understand why the muscle pain was in so many places at the same time, but now I've read up on hypermobility syndrome, it explains a lot. I know it doesn't go just because I know what's causing the pain, but at least it might help others, to know not to test their muscles too much.
Avatar universal
Hi -- I am amazed at this diagnosis, too. I have suffered with widespread muscle and joint pain for almost 19 years, since the 2nd trimester of my only pregnancy. I saw multiple doctors (GP and specialists) over the years, and not one of them came up with anything useful. A physiotherapist I saw back in '92 came the closest by telling me that I had the loosest joints he'd ever seen. I imagine most of you have been doing the same thing I've been doing over the years -- overmedicating on OTC pain meds to keep somewhat functional. Last fall I realized that I might be overdoing the ibuprofen when I started bruising severely without any injuries to account for the bruises. I was finally referred to a rheumatologist who almost immediately told me I was hypermobile, and that this was likely the primary cause of all of my symptoms. What a relief -- no MS, no ALS, no lupus -- she ordered all the bloodwork to elimate other possible causes. Knowing what I'm dealing with has lightened the load on my mind considerably. No, this condition will not go away, but I have a plan in place now to minimize its effects on my life. I have joined a gym to strengthen my muscles, and am on medication to help me achieve a deeper, restorative sleep at night. So far, so good, even though I was only diagnoses 2 weeks ago! Halleluiah -- it's not all in my head, and I'm not just lazy!
Avatar universal
No...it's not laziness.  It may surprise you, but most here don't use OTC as it isn't effective on these pains (since they are not inflammatory).  Also, taking anti-inflammatories over a period of time can cause some serious ulcerations the stomach.  

This seems to be, yet, another symptom that relates to FMS/CFS...I feel so special, lol.

Glad you are feeling better and getting some good rest.
Avatar universal
Hi, thanks for your answer. the knowledge that I had surgeries on my spine, which put me at risk, and ultimately made the pain worse, when I probably didn't need to, makes me so mad, but it was along time ago, and i suppose the surgeon thought he was doing the right thing at the time. As the physio said last week, you can't go back, only forward, and they know a lot more about hypermobility nowadays. So, back to the question, is it fibro or is it both? Think it must be both, the burning pain and pins and needles have become part of my life, wish i could  wave them goodbye, but am now doing specific excercises, to try and strengthen muscles, so will see if that helps. i've got a feeling it's going to be a long time though before i can even think of not taking pain meds, and using patches, hope you continue to do well, and get on top of things:)
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