Any women with hypermobility syndrome?

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Hi

I had never heard about HMS until yesterday until my doctor suggested that I have it and has referred me to a specialist for testing.

He says I may require physiotherapy.

I was wondering if anyone can give me advice about how they manage with it.

Thank you

I have it and need to do physical therapy; otherwise, my joints tend to go out of place.

See:
http://www.medicinenet.com/hypermobilit ... y_syndrome

I think many of us have it.

Also, I believe it is common for people with handicaps to have a too laxness in the joints / tendons or the opposite ie a stiffness to the muscle groups or joints ie a mild to moderate form of Cerebral Palsy. Both are commonly onset since birth.

I do not know the root causes but could be due to neurological issues?

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I have gone through physical therapy. I do maintenance now with some exercises they gave me to do along with cardio circuit stuff. I also perform Pilates with exercises bands to build strength in the muscle groups.

See:
http://www.amazon.com/Method-Cardio-Fle ... and+videos

http://www.amazon.com/10-Minute-Solutio ... and+videos

http://pilates.about.com/od/pilatesexer ... ctions.htm

These are two Videos I recommend along with general Pilates mat work outs. They are for a moderate level. I see results in a more leaner but stronger build; a more "dancer" like body build.

Some videos on Amazon can move to a more expert stretching level / strengthening level. But I do only what my joints are comfortable with and if the "feel" uncomfortable I may modify.

Thank you soooo much for this, really interesting useful stuff.

I am fascinated by your comment many of us have it, Ive been reading around this online and it seems there may be a connection.

I was diagnosed with this as child. I never required any therapy for it, but I couldn't participate in some things during gym class because of it. I could always tell when I overdid it because my joints would ache and swell, and my fingers and toes would turn purply blue. I had no idea there could be a connection between this and autism though; very interesting!

Stretching and excess pressure on joints can worsen symptoms, as can cold temperatures. Take care to bundle up when it's cold outside and don't overexert yourself physically. Also, there is a link between being hyper mobile and having painkillers affect you more so/differently than the general population. I have a very low tolerance for any kind of opiate, and I can't take the full dose of most pain medications.

Like the previous poster, I do some exercises to strengthen the muscles around my joints to keep them stronger, though I practice light yoga instead of pilates. (I practice Yang poses, where you hold the position in order to strengthen, instead of Yin poses which are meant to stretch, since I don't need much stretching.)

I have read that hypermobility is improved with a gluten-free diet. I eat a mostly Paleo diet, and I follow journals on the Mark's Daily Apple forum, and I have seen people post about improving this issue through diet.

I have EDS type 3, which is hypermobile. To be honest, though, most people would benefit from a gluten free diet. Even healthy people with nothing "wrong" with them.

So am I! Hi Five! I am at the more severe end with lax spine and stuff too. I have been diagnosed with the double whammy of EDS type 3 as well as Marfan's Syndrome. Horray for having crappy connective tissue as well as muscular structure.

Hi,

I've also been diagnosed with hypermobility syndrome recently. It's good to know why one sprains, breaks body parts, and has pains

Have been to physiotherapists pre-diagnosis, and have mixed feelings about them. If the physiotherapist is the type than listens and acts accordingly when a patient tells him in a rather low monotonous voice “that hurts”, then it's all good. If in the other hand the physiotherapist is the type that expects the patient to be screaming “IT HUUUUURTS!! !!” and rolling on the floor in pain before acknowledging that the person is actually hurting, then there's a little problem

I've taken up yoga since I was diagnosed and it seems to be working. Found a rather nifty free app for my phone - because no way am I putting myself through the torture of going to the gym with the noise, smells, people and lights, it would simply defeat the purpose – and it is helping with the pain and I feel my joints a bit under control. The yoga also seems to be helping with my anxiety, although I can't do much of the meditation side of it, I end up thinking of everything else but the meditation and get bored.

Also trying to have a super healthy diet, and getting enough rest.

I have had hypermobility since birth, never heard it described as a syndrome before. At three days old I was fitted with my first splints to hold my joints correctly.

My joints are still unstable and the physiotherapist advised against yoga because I could overstretch so easily and don't feel pain in the same way as other people seem to, so I'm normally unaware of initial injury.

I have arthritis in my least stable joints, I am told this is a direct result of not being extra careful, I wish someone had mentioned that risk before I got to 40, I may have missed a broken bone occasionally, but I certainly feel the arthritis.

P.S. When I was pregnant the baby didn't stay in the middle, it was off to one side instead of out the front, sticking out the left side of my waist at times while my abdomen to the right of my navel was empty of any sign of a baby! Other times it was back in the middle, only after 7 or 8 months did it stay in the middle, because it had got too big and took up all the available space on both sides.

What did the midwife say? Loose ligaments holding my womb in place (or not).

Everyone will respond better to different treatments, and by all means should follow the recommendations from their doctors and physiotherapists.

I have tried pilates in the past, pre-diagnosis, and it wasn't for me, I would injure myself more often than not, and even ended up with a nasty back injury as a result - the joys of hypermobility. The reumathologist that finally diagnosed me was the one that suggested the yoga, so far I haven't had any injuries with it, and I feel a bit better and it's helping stabilize my joints. I also have arthritis on some larger joints due to years of repeated injuries and dislocations, and ironically had lost some mobility in them, the yoga is helping to regain a normal range of movement and after the session the pain feels a bit better. But that's my personal experience with it.

The only suggestion I would make is that whatever it is someone chooses as a treatment, they shouldn't push themselves to the point of feeling any pulling sensation. A physiotherapist told me a while ago that it's best to stop at the point of feeling a very light tightness, rather than going as far as feeling a stretch, never mind pain, for a hypermobile person it means they have gone too far!! !

Well I just read the Wikipedia article on hypermobility. Now I know why I had to see Dr. Snell so often when I was a little kid. I remember his concern with how far back my knees bent before they locked.

When I was little I could easily lay on my belly and touch my toes to my forehead. On a good day I could hook my feet under my chin. My fat *** can't do that anymore.

I have this too - just another data point.

I don't have an official diagnosis, but when I went to an orthopaedic engineer to have insoles fitted, she told me I was borderline hypermobile because I showed her how my knees bend backwards and how wobbly my ankles are. My feet look normal when I don't put weight on them, but as soon as I stand up they "collapse", so I need insoles to support my arch.

A few weeks back I discussed hypermobility with a cousin of mine who is a chiropractor. She asked me to do a series of movements, and said there was a score of two points per joint and if you score over 10 then you are hypermobile. Ther were:
*knees bending backwards (check!)
*thumb joints bending backwards (check!)
*being able to bend your wrist down and using your other hand to press your thumb onto your underarm (check!)
*elbows bending backwards (check!)
*being able to bend your little finger and wrist backwards so your little finger touches the top of your underarm (I can't do this).

(hope my explanations were understandable, it would be better to show pictures perhaps)

She then told me "yeah, you're hypermobile". My main problems are my knees and ankles being wobbly and I have had two bouts of tendonitis in my knees.

I had no idea there was a connection!! ! Interesting! I am hypermobile as well. As a kid I had to wear braces on my wrists and ankles... I had no idea this had a significant co-morbidity with ASDs though.

Fascinating!

This is my problem, too. I've tried yoga a couple of times and it's ended up being horrible for me.

I have HMS. As a child I was just known for being very flexible and being able to do 'party tricks' like pulling my shoulder in and out of socket which as a child was just amusing. However, now it's just very annoying and rather painful. I see a physiotherapist who I was referred to a couple of years ago who sees me on an ongoing basis to help and is brilliant. He's attached to the mental health team I see and so he's very good at understanding how body and mind affect each other. He's also very interesting and we have great discussions on politics, the mental health system and many other things. He makes me laugh and treats me like the human I am which is often missing with some professionals I have met in the past. The main problem is the pain. My pelvis is unstable and this causes problems with my hips and knee joints. My shoulders aren't as strong as they should be, I can easily pull one of my shoulders in and out of socket. The pain is the main issue though to be honest.