Hypermobility

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Hypermobility

Postby nicki32 » Fri Aug 19, 2011 3:33 pm

Hi i'm Nicki, i'm 31 but have had Fibromyalgia and CFS since my late teens so certainly know what it's like to live with it in your twenties. I've recently been told i have hypermobility in my joints-do you have any ideas how to reduce the symptoms of this or whether this is possible?
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Re: Hypermobility

Postby FluppyPuffy » Fri Aug 19, 2011 5:14 pm

Nicky, I've split your post off from where you originally made it, and retitled it with you asking about HMS. I've also moved it into here as well, not to confuse you or anything, but because in here you'll probably get a better response to your question as well as your post not getting lost in the many things that are in the bit you originally posted it in :facepalm: :facepalm: :facepalm:

There are several members with HMS on here, so hopefully they will have some advice for you :fingerscrossed: :fingerscrossed:
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Re: Hypermobility

Postby denys » Fri Aug 19, 2011 6:47 pm

It would seem that HMS and FM go hand in hand for a lot of people, (not me) but a lot of members have posted about it. From what I can gether its a case of pacing and being very aware of your joints etc and not pushing it. Others have said physio has helped but it has to be by someone who is aware of the problems of both conditions. I hope you get some answers from the other sufferers soon :wave: :wave: :wave:
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Re: Hypermobility

Postby Ldyalb » Fri Aug 19, 2011 10:30 pm

Hi I'm hypermobile. Only discovered it when I went to Physio for the Fibro but I'd always been aware of my 'weak' ankles.

There is no cure, best thing to do is to know your body well, i.e. where your hypermobile joints are and aren't. It's worth researching Ehlers-Danlos Syndrome Type 3 Hypermobility type and Marfans Syndrome to see if your hypermobility is caused by either of those. There is a school of thought that all non-Marfans Syndrome Hypermobility is EDS Type 3 HMS Type but sadly my Rheumy doesn't agree to that and just diagnosed me with Hypermobility (everyone in my family is hypermobile to some extent, I'm much more so than my parents and for me it's an issue, for them they just had some cool party tricks).

Who diagnosed you? Did they check your Beighton Score? This is a score of 9, you get points for each of these;

- bend right thumb to arm
- same with left
- bend left little finger top joint backwards by 90 degrees
- same with right
- bend left knee back 90 degrees
- same with right
- hyperextend the elbows (bend backwards) - 1 point per elbow
- standing with knees straight bend down and place palms of hands flat on the floor

If not check these yourself so you know where you are and aren't affected. I can bend most toe joints backwards also. There are a few facebook groups with pictures to help you know what 'normal' movements are actually weird. I freaked my hydrotherapist out the other week - I had an arm band around my foot for one of my exercises and when it was time to remove it she swam over to remove it as you can't bend down in a pool. But I didn't realise and had already raised my foot level with my shoulder to remove. Didn't realise most people can't get their legs that high! :shock:

Treatment usually focuses on Physio and pain management - Physio can help teach you safe exercise (I am banned from running, dancing, high impact sports and high heels due to my rolling ankles) and help strengthen the muscles around a joint to help reduce chances of subluxing or dislocating it. Hope that helps.

http://www.google.cz/imgres?q=hypermobi ... -Bw&zoom=1

http://www.google.cz/imgres?q=hypermobi ... -Bw&zoom=1

http://www.google.cz/imgres?q=hypermobi ... =139&ty=79
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Re: Hypermobility

Postby madcrafter » Sat Aug 20, 2011 3:05 pm

Hi, I was dx just last week with FM and HMS. I'm finding it difficult to help one without flaring the other. The rheumatologist diagnosed both at the same time and my score was 9 for HM.
Maybe we can find solutions together x
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Re: Hypermobility

Postby shazq » Sat Aug 20, 2011 3:18 pm

madcrafter wrote:Hi, I was dx just last week with FM and HMS. I'm finding it difficult to help one without flaring the other. The rheumatologist diagnosed both at the same time and my score was 9 for HM.
Maybe we can find solutions together x


Hi
Found this link, not sure if it will help :dunno:
http://www.hypermobility.org/painandhms.php
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Re: Hypermobility

Postby nicki32 » Sat Aug 20, 2011 3:37 pm

It's really interesting reading the various replies and how differently people are affected. My doctor and a specialist podiatrist told me my joints were hypermobile, i'm not ultra bendy like some of you, but i find my joints crack alot and this is very painful-do any of you experience this? It sounds like strengthening the muscles around weak joints is a good way forward but obviously you've got to find a balance so the fibromyalgia doesn't flare up while you are doing this. Thanks again for all your advice and i'll lat you know how i get on next week at my next appointment :fingerscrossed:
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Re: Hypermobility

Postby FluppyPuffy » Sat Aug 20, 2011 4:45 pm

:fingerscrossed: :fingerscrossed: for next weeks appt nicki :fingerscrossed: :fingerscrossed:
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Re: Hypermobility

Postby denys » Sat Aug 20, 2011 4:47 pm

Yeah :goodluck2: :goodluck2: :goodluck2: :wave: :wave:
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Re: Hypermobility

Postby Ldyalb » Sat Aug 20, 2011 8:56 pm

Hi Nicki, the exercises were quite gentle so it didn't aggravate the fibro. I had to do squats type stretches to strengthem my ankle muscles.

My joints do crack a lot and it can be very painful, especially in the ankles. I was x-rayed a year ago and no evidence of arthritis but watch for arthitis symptoms as it can pre-dispose you to arthritis.

I worked with a lady a few months ago who is hypermobile and she has arthritis now (35) so unfortunately it can slightly increase your chances of arthritis in middle-age. My Rheumy said the same.

Apparently yoga and pilates are good for people with it as the flexibility is useful but I found the pilates my Physio gave me flared pain in my ribs so we abandoned it after 2 attempts. But he says a lot of people with HMS and FMS find that type of exercise good, esp as it can be quite calming and peaceful and help combat stress which is a major flare-up cause.
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Re: Hypermobility

Postby nicki32 » Mon Aug 22, 2011 2:56 pm

Hi Madcrafter, i hope you're coping ok with your diagnosis and lets hope we can find some answers to our questions soon!

Ldyalb, thankyou for your help and advice on this topic and it's good to know i'm not alone :D I hope to look up some of the information and suggestions soon x

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Re: Hypermobility

Postby tireesix » Mon Aug 22, 2011 11:46 pm

I was diagnosed with hypermobility syndrome first and it was later revised to EDS 3 due to skin involvement.

My shoulders and kneecaps have a habit of dislocating as does my jaw and other joints pop out but not as much. I get chronic pain with it.

HMS/EDS is also a heritable condition, I have managed to pass it on to all 3 kids, 2 of whom are now in physio for it.

There are some good books out there and the HMS website and forum is also pretty good.
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Re: Hypermobility

Postby ciderpig122 » Mon Aug 29, 2011 10:02 pm

Hi :)

I am hypermobile too!

passed it on to my 14 year old daughter who is suffering, took me 9 years to be diagnosed, still dont have the right treatment, am waiting to go to prof graham in London UCLH in september, hopefully he can help me get some treatment soon :S
x
Fibromyalgia, Elher Danlos Type Hypermobile, OCD, Asthma, PTSD.
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Re: Hypermobility

Postby nicki32 » Fri Sep 02, 2011 3:24 pm

Hi people, just to let you know my appointment with the immunologist last week went fine, thanks for all the good luck wishes! I asked him about the Hypermobility as i didn't really feel my joints were that mobile like some people describe but he assured me that every case is different and after putting my arms into some very strange positions i finally agreed with him! He offered me various medications but they were all to relieve pain and like most of you, i find alot of them aggravate my stomach so i'm leaving the painkillers how they are right now.
One interesting thing i did find out is that the hypermobility can affect the jaw and so at last i have an answer as to why my jaw constantly feels like it's dislocated and i often wake with such excruciating pain in it- so anyone else with similar symptoms may be worth speaking to your specialist. Hope you've all had a reasonable week, best wishes Nicki xx
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Re: Hypermobility

Postby FluppyPuffy » Fri Sep 02, 2011 4:20 pm

Sounds like you saw a decent dr nicki, glad you got some definitie answers from the appt :grouphug:
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