Hypermobility Syndrome?

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Hypermobility Syndrome?

Postby Storm » Wed Jul 16, 2014 11:32 am

I had an appointment today to ask for Fibromyalgia formal diagnosis, since I've only had a diagnosis from 2 different GP's, and this woman wouldn't listen to anything I said, wouldn't do the pain point test or anything, and got me to do all these different bends with my body and diagnosed me with Hypermobility Syndrome. She even said my other symptoms are explained by something else, but probably didn't want to diagnose me or something because I'm only 23 and thought I was making it up.
I do think that diagnosis applies, but so does Fibromyalgia. I've even looked it up that Fibromyalgia and Hypermobility Syndrome are commonly comorbid.
I don't think this woman was qualified to diagnose it so she didn't bother, but wouldn't point me in the direction of the right place to get diagnosed. I've given up now, it's too stressful.
I know what symptoms I have, and they all repeat in other Fibromyalgia sufferers.

Anyways, just wondering how many of you are comorbid with Hypermobility Syndrome?
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Re: Hypermobility Syndrome?

Postby Saffi » Wed Jul 16, 2014 12:02 pm

I AM!

I was diagnosed (By a Rheumatologist) with HMS when I had terrible terrible hip-pain around the age of 18. So I thought that was all I had. But later I saw a 'Bio-mechanic' when I was 21 who was analysing the pain in my hips by how I walk, which turned out to be normal - hips are just buggered - and he said he didnt think all my pain (the muscular stuff and exhaustion) was explained by HMS - so he sent me to a different rheumatologist who was a Head consultant at a hospital and who has a special interest in FM, and he diagnosed me with FM on top of the HMS. It isn't a combination I would wish on anyone; joints f***ked, muscles f***ked, nervous system f***ked...

Cant exercise to build up muscles for FM because HMS cant take the strain. Bad FM muscles working twice as hard to support weak HMS joints, and then trying to operate a normal life as well - and THEN exercise for the FM? Madness!!

My advice - go to a different consultant, and a different one, and a different one until you find one who knows what they're talking about and then never never let them go! He helped me with getting a Blue Badge and my benefits.

LOVE and HUGS xx
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Re: Hypermobility Syndrome?

Postby TGM » Wed Jul 16, 2014 12:07 pm

I have been diagnosed with both, by two different specialists.
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Re: Hypermobility Syndrome?

Postby Corinnekj » Wed Jul 16, 2014 12:35 pm

I was diagnosed with both by my first consultant cos go told me I had rhumatiod arthritis !
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Re: Hypermobility Syndrome?

Postby ktLuP » Wed Jul 16, 2014 1:27 pm

I was diagnosed with HMS January this year by a rheumatologist, who confirmed I had fibromyalgia that had been diagnosed previously by a neurologist x
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Re: Hypermobility Syndrome?

Postby SandraCRH » Wed Jul 16, 2014 1:57 pm

Hi. I've had fibro for 20 years & have never heard hypo mobility being part of it. However, I have a friend with EDS which is associated with hypo-mobility. A rare genetic disorder that has 5 groups in the syndrome. Perhaps you could look at this. Young girl in the wheelchair in Corrie has it. Endlos-Danlos syndrome!! Good luck!
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Re: Hypermobility Syndrome?

Postby JDWench » Wed Jul 16, 2014 2:03 pm

I was diagnosed by a rheumatologist in 2007 with hms and by a different rheumatologist is February this with fibro he said it's all linked. Today I've been referred to a musculoskeletal specialist because both of these conditions are causing nerve issues which are affecting my limbs, mainly legs. 1/3 people witn hms also have fibromyalgia.
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Re: Hypermobility Syndrome?

Postby ldparker » Wed Jul 16, 2014 3:56 pm

My osteopath said they often go hand in hand. My GP will not commit to either despite osteopath saying both but BUPA obviously take osteopath's word as will no longer cover treatment. I'm in no win situation as GP won't ask for more tests (been to 3 GPs at my practise) as they don't like to "label it as it could be so many other things". GP sent me to hospital to test for sleep anapnea even though I said no way I had it and then consultant replied back to GP saying sleep disorder due to Fibro and / or medication (taken for Fibro). Feeling at a loss!
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Re: Hypermobility Syndrome?

Postby Emmaxx » Wed Jul 16, 2014 4:24 pm

Hi all I was diagnosed at hospital by rheumatologist with HMS and fibro at same time


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Re: Hypermobility Syndrome?

Postby lolabolla » Wed Jul 16, 2014 4:57 pm

Same here, I was diagnosed with both HMS and Fibro 2 years ago when I was 52 years old.

I have been super bendy since childhood as you are born with it. I thought it was pretty cool to be able to bend my body, limbs, fingers and toes into weird positions.

Throughout childhood I was constantly at A&E for sprains etc., then dislocations of fingers and toes in my 20's and 30's, torn ligaments in my 40's and 50's along with joint and muscle pain for the past 50 years.

I thought that it was 'normal' to be this way and coped as best as I could.

It wasn't until the 70's that HMS was recognised by the NHS which is probably why I slipped through the net until I was finally diagnosed but then the damage was done.

I hope you get plenty of help from the NHS to manage your symptoms.

Lola xx
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Re: Hypermobility Syndrome?

Postby alibp » Wed Jul 16, 2014 5:21 pm

I was first diagnosed with hypermobility then with fibro. I also top that off with Epilepsy which can really make medication combinations interesting
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Re: Hypermobility Syndrome?

Postby iblinkin » Wed Jul 16, 2014 5:28 pm

Hi Storm, here's a link for you to look at.. they talk about one and the other and possibly being both in regards to your symptoms.
http://www.healthcentral.com/chronic-pa ... rmobility/
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Re: Hypermobility Syndrome?

Postby morette5 » Wed Jul 16, 2014 9:03 pm

I have fibro, and have recenlty had to call an ambulance when my back locked. When i said i had fibromyalgia and CFS, i was asked if i had been diagnosed with Hypermobiility or Marfans?? i had no idea what these were. I have been asked this before by some medical. I assume there must be a relationship.
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Re: Hypermobility Syndrome?

Postby Laura_Ridley » Thu Aug 21, 2014 10:15 pm

I was diagnosed with hypermobility syndrome first before fibro. I have always had flexible fingers and arms and ankles and hips. All my joints click and clunk from a young age. I had problems with my jaw when I had braces as a teenager which when my dentist needed to move my jaw it moved too far and stayed like it! My jaw also used to sublux which used to be pretty scary! Thankfully it doesn't do it now. But I still pull things easily like muscles, tendons and ligaments. I quite often have chronic tennis elbow.

The whole thing sucks really!! But I know I don't suffer with it as bad as some people who are always dislocating things.
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Re: Hypermobility Syndrome?

Postby TNK* » Fri Aug 22, 2014 4:07 pm

I also have HMS, if you could see the angles i can bend my ankles in, you would see i dont really need a full on Dx
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