FM and Hypermobility?

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FM and Hypermobility?

Postby ali13 » Fri Apr 24, 2009 1:18 pm

Hi there, I'm just wondering do many of you suffer from this particular combination? I was diagnosed last year and have since been trying to keep it together (literally, as any with HMS will know!). I find it hard to know when I am suffering from FM pain and when I have really injured my joints. I also find it hard to get my GP to recognise problems caused by the HMS, instead they put it down to 'just' fibromyagia.

There's an interesting school of thought at the moment on whether FM is a wrong diagnosis for people with HMS as it also causes Chronic Fatigue, pain and IBS (stretchy bowels!). I don't really know about this as up until now I have tried to separate my symptoms and had never given any thought as to whether they were from the one condition. :dunno:

Either way, both conditions are miserable enough without having both! It's hard to exercise to keep my joints conditioned with the fatigue and pain of FM. Anyone else?
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Re: FM and Hypermobility?

Postby Lucy-Lemon » Fri Apr 24, 2009 2:14 pm

they are very common, as i'm sure you'll find out as more people reply :lol:

i have both (well i have ehlers-danlos syndrome), so i know what it's like trying to keep things together :lol: i was diagnosed with hypermobility first (age 4ish, but formally age 13) but when chronic pain set in i was dx with fibro. then about 8 months later i was dx with ehlers-danlos syndrome.

unfortunately getting doctors to recognise it is a nightmare. my consultant doesnt even remember i'm hypermobile :roll:

i find it hard to keep my joints conditioned, and always have had. i had physiotherapy when i was 13 because even though i was fit, active and my muscles were strong, they never worked in the right way. i still have that problem though - i do my physio exercises and great they've strengthened the muscles but they still dont help the joints :roll:

take care,
Lucy x
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Re: FM and Hypermobility?

Postby ali13 » Fri Apr 24, 2009 6:16 pm

I'm planning on speaking to my GP about EDS as I have a lot of skin involvement ie. see-through skin, bluish sclera, papery scars. Doubt I'll get anywhere though, my GP is frighteningly ignorant about any of my medical conditions bar eczema!

I know quite a few people with both (from HMSA forum) but always looking to speak to more both for advice and support really. It's so hard for other people to understand how miserable it is to have your knees walk off while you're trying to use them!
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Re: FM and Hypermobility?

Postby shazq » Fri Apr 24, 2009 6:35 pm

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
Fibromyalgia Awareness Day May 12TH.
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Re: FM and Hypermobility?

Postby Lucy-Lemon » Fri Apr 24, 2009 6:50 pm

ali13 wrote:I'm planning on speaking to my GP about EDS as I have a lot of skin involvement ie. see-through skin, bluish sclera, papery scars. Doubt I'll get anywhere though, my GP is frighteningly ignorant about any of my medical conditions bar eczema!

I know quite a few people with both (from HMSA forum) but always looking to speak to more both for advice and support really. It's so hard for other people to understand how miserable it is to have your knees walk off while you're trying to use them!


i hope you get somewhere with your GP!

i don't know much about the condition yet, but i was diagnosed by Professor R. Grahame up in london - we had to go private. however you need your GP to write a referral :roll:

I hope you're not in too much pain at the moment :hugs:
If you ever want to chat feel free to PM me :) i might not be of much help, i don't know much about the condition and i'm only 15, but the offer is there :lol:

and shazq thanks for the link to that article, i'm going to read that in a sec :)

Lucy xx
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Re: FM and Hypermobility?

Postby ali13 » Sat Apr 25, 2009 11:38 am

I have heard of the wonderful Prof G! Unfortunately I live in Scotland so can't get to see him easily, but I've read a load of his papers on HMS/HEDS. Thanks so much, you've been very helpful! :hugs:

Ali x
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Re: FM and Hypermobility?

Postby Corinne » Sat Apr 25, 2009 6:09 pm

I have both HMS & FM, I was diagnosed with HMS a year or two before the FM & it was only later I realised how similar the conditions are.

I am lucky in as much as I've never had any full dislocations but I can do every single one of the standard hypermobility tests & my knees & hips are the worst area.

I never know where the FM stops & the HMS starts either- the only acknowlegement I get of the two separate conditions is that the physio at the pain clinic has to adapt some of the basic stretches because, for me, they aren't stretches :roll:

Its a still up for debate but many doctors consider "Benign Joint HMS" (which is my official diagnosis) & EDS type 3 to be the same condition- I also have the very thin skin- my veins are very visable etc & I scar easily, so I don't know whether it is or not!

Its all painful so I suppose it doesn't really matter.

Corinne x
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Re: FM and Hypermobility?

Postby Elsbeth » Tue Apr 28, 2009 10:31 am

My daughter has HMS and again in true Erica style I didn't know the 2 were related. I have often wondered if some of her pains were something else as they seem to occasionally mirror my own.

Thanks for the info on that one. I shall keep an eye on her I think.
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Re: FM and Hypermobility?

Postby 023Emma » Tue Apr 28, 2009 6:44 pm

Hi, I've only just found this post, I've had HMS since i was 9, and have had all the resulting problems from it!!

I also got irritable bowls too, and tried to separate the two, I was only last year when i got diagnosed with FM that everything kinda came together.

I have a lot of trouble now because of the HMS in my joints and the FM in my muscles, i can seem to exercise or even move sometimes.

I am under Physio, but having FM i often forget to do it, or i am so tired i go to bed without having done it either.

I know what people mean when they say it's hard to distinguish between the two! I find it very hard!!!
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Re: FM and Hypermobility?

Postby Sophiex » Fri Aug 21, 2009 2:23 pm

I'm sorry for bumpng an old thread up but I didn't think it was worth starting a new one. :oops:
I've just seen a rheumatologist who thinks I have elements of Hypermobility syndrome. He was extremely unhelpful and I don't fully understand this condition, despite looking at the website that he told me to. :? I used to be very bendy but I'm not particularly bendy anymore, although I am very clumsy and physically, I'm always feeling weak.

I tore ligaments in my ankle over a year ago and I'm still struggling to walk on it normally, I wonder if it's linked to being hypermobile. :?: I see a fantastic physiotherapist for my ankle and I'm going to let her know what the rheumatologist said, she's been giving me gentle exercises for my pains elsewhere but feels I may need more specific help such as; hydrotherapy. My GP is useless and the rheumatologist wasn't overly helpful either, he just said 'gentle exercise'. I'd love to be able to exercise but the pain can be unbearable at times and I spend most of my time asleep or resting anyway. :|

Sorry this was longer than I meant it to be!
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Re: FM and Hypermobility?

Postby miajane » Fri Aug 21, 2009 4:34 pm

I had to look up hypermobility syndrome as I hadn't heard of it :oops:
I've obviously never been diagnosed but being 'double jointed' in my hands has always been a party trick of mine.
I'm not sure if it would count as HMS but, I can lock my fingers at the middle knuckle and bend them from first knuckle, I can also bring my thumb down to touch my arm. I have been able to do this for years since I was a kid. I used to be very flexible I could lay my hands flat on the floor with my knees locked and I used to be able to kick my leg straight up so my knee was touching my shoulder, I just thought it was because I was very active. I can't do this now as too much pain,
I get a lot of pain in my hands but just thought it was the fibro. :dunno:
Sorry I can't be of more help
Take care
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Re: FM and Hypermobility?

Postby greeneyesblue » Sun Aug 23, 2009 7:42 pm

ali13 wrote:Hi there, I'm just wondering do many of you suffer from this particular combination? I was diagnosed last year and have since been trying to keep it together (literally, as any with HMS will know!). I find it hard to know when I am suffering from FM pain and when I have really injured my joints. I also find it hard to get my GP to recognise problems caused by the HMS, instead they put it down to 'just' fibromyagia.

There's an interesting school of thought at the moment on whether FM is a wrong diagnosis for people with HMS as it also causes Chronic Fatigue, pain and IBS (stretchy bowels!). I don't really know about this as up until now I have tried to separate my symptoms and had never given any thought as to whether they were from the one condition. :dunno:

Either way, both conditions are miserable enough without having both! It's hard to exercise to keep my joints conditioned with the fatigue and pain of FM. Anyone else?


Yep, I have HMS. Can quite comfortably put my foot into my armpit (the physio's banned it though). To be honest, I've had bendy joints for as long as I can remember but the FMS is less than a year old :dunno:
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Re: FM and Hypermobility?

Postby matthew » Tue Aug 25, 2009 11:02 pm

Sophiex wrote:I'm sorry for bumpng an old thread up but I didn't think it was worth starting a new one. :oops:
I've just seen a rheumatologist who thinks I have elements of Hypermobility syndrome. He was extremely unhelpful and I don't fully understand this condition, despite looking at the website that he told me to. :? I used to be very bendy but I'm not particularly bendy anymore, although I am very clumsy and physically, I'm always feeling weak.

I tore ligaments in my ankle over a year ago and I'm still struggling to walk on it normally, I wonder if it's linked to being hypermobile. :?: I see a fantastic physiotherapist for my ankle and I'm going to let her know what the rheumatologist said, she's been giving me gentle exercises for my pains elsewhere but feels I may need more specific help such as; hydrotherapy. My GP is useless and the rheumatologist wasn't overly helpful either, he just said 'gentle exercise'. I'd love to be able to exercise but the pain can be unbearable at times and I spend most of my time asleep or resting anyway. :|

Sorry this was longer than I meant it to be!


I have a similar story to you Sophiex. I am very hypermobile and I dislocated my shoulder carrying while carrying shopping. After this I saw my GP who seemed shocked at how mobile I was - I can touch the floor with my palms, I can do the lotus position and I used to be able to put my legs behind my head ( :shock: ). I saw an orthopeadic surgeon who did xrays and I had physiotherapy for a while - all the while thinking the pain was down to the hypermobility and not fibro.

Luckily I got properly diagnosed eventually and now my GP thinks the hypermobility is a side issue. I see the Rheumatologist next week so we'll see what he says though. :?
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Re: FM and Hypermobility?

Postby LinzWorld » Fri Aug 28, 2009 12:04 pm

I have HMS and Fibro. Hypermobility is now considered to be a risk factor for developing Fibro.
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Re: FM and Hypermobility?

Postby Lisa21 » Wed Sep 02, 2009 10:04 pm

Hi, :wave:
I have both FMS and HMS (Hypermobility Syndrome). I tend to sprain my arms, wrists and ankles a lot. So, could HMS cause Fibromyalgia?

I also have Crohn's disease, Costochondritis, Vitamin D & B12 deficiency and PCOS!
Fibromyalgia, Costochondritis, Hypermobility, Asthma, Crohn's Disease,PCOS, Vitamin D & B12 Deficiency
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