Having just seen an amazing rheumatologist at the N & N hospital in Norwich I thought I should pass on what she said. I was hyper-mobile as a child. It seemed pretty cool at the time, being able to sit in weird positions, bending my limbs in all sorts of odd ways. The result though is that I now have nearly 50 years of tendon damage. Factor in fibro on top and I can now look forward to a life time of constant pain and the inability to do a lot of things. She's going to do as much as she can to give me some relief but the damage is done. So, if you know anyone who has hyper-mobile children, please pass on this warning to discourage 'showing off' this ability. It's not worth it. Thank you. Xx

7 Replies

  • Me too, but my gastro pointed this out to me after having lots of problems, its something called Ehlers-Danlos Syndrome, which leads to dyautonomia and various other things...it is very commonly mis-diagnosed as fibro!

  • Hi Poppymel :)

    The same applies to me my friend.............

    .......................I didn't know that being hypermobile would cause the damage it has either and like you understand how I have now fibro. I also didn't realise that HMS was genetic until my diagnosis either :o It is tough to manage and control both conditions simultaneously as they appear to be at war with other and not liking what each needs regarding therapies and treatments.

    I don't have children but I do have nephews and their dad is hypermobile too like me but he didn't seem interested when I tried to explain the implications of HMS to him.

    I am where you are at and struggling to even get through a course of Hydrotherapy as a result of the HMS and fibro it's rather stressful. I will endeavour to carry on and not give up though!!

    It helps a lot if you can put together a support network which includes your physio and a counsellor, GP etc that you can contact if something goes wrong.

    I also find that I have to adjust my pain meds regularly in accordance with the HMS to control the level of fibro and keep it to a minimum. This is always done under the advice and instruction of my GP and must advise that members do not adjust their meds without consulting their doctors first.

    I don't know if there is any in-depth research into a connection between the two in the sense that the repetitive tendon/ligament damage/trauma causes fibro or not. If we help FibroAction to raise awareness and funding maybe we could help someone to carry that research out :)

    Please remember that I am not a medical professional just a fellow fibromite sharing my experiences with you.

    I wish you wellness and send you soft fluffie hugs and smiles :)

    :) xxxsianxxx :)

  • How interesting, I'm sorry it's too late for you to do anything but get relief. Hope it works. :)

  • I too am hypermobile, but only found out because the specialist rheumy who diagnosed me showed me that what I was able to do with my limbs was not normal. My daughter has been having problems with pain too and had to go see a rheumy and she is hypermobile too, they tested her for marfans syndrome. I am worried that she too will develop full blown fibro as she suffers from similar symptoms to me and she's only 18.

    It was only after finding all this out and then telling my brother that he told me he was diagnosed with hypermobility as he has trouble with his knee's dislocating.

    Hypermobility and fibromyalgia can go hand in hand it seems.

  • Hypermobility is also linked with lipoedema which is abnormal laying down of fat from the waist to ankles and can but painful. Usually no body weight. I wonder if that us linked too (www.lipoedema.co.uk) Both of my girls have HMS but not lipoedema. They drink forever freedom (aloe gel with glucosamine and chondroitin and MSM ), who lots of people say helps. PM me if you want info :)

  • I also have hypermobility and my grandson has been diagnosed as having it bless him he is 7 years old. My wrists are very weak now and painful, I dropped my dinner plate the other day before I had eaten my lovely salad and as it takes so long to do anything I was annoyed and ended up with a meagre tea of the new potatoes I had left over and some ham.

    Of course when I was a child I recall my mother telling folk that I was "double jointed". in those days there were no medical checks etc... now in later years I feel the effect. My hips are dreadful and ache like crazy, I have osteoarthritis and fibromyalgia too.

    Hugs x

  • Hi Poppymel

    I am so sorry to read that and I hope that you are not in too much pain at this time. It is a very sensible word of caution as when we are young we think the we are invisible and aging never enters our thoughts?

    All my hopes and dreams for you

    Ken x

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