Hypermobility Syndrome

Hi there,

I'm new on here and have found a lot of these articles very useful. Does anyone suffer from Hypermobility Syndrome (HS)? I've just had an operation on my ankle, I've always had flat feet apparently it's common in people suffering with HS. My right foot completely collapsed hense the op to reconstruct my foot and replace my post tib tendon.

I am now suffering with my elbows and wrists and also my good hip and lower back as I am unable to weight bear for 8 weeks (I am week 5 in after surgery) and using crutches. I know I have to keep moving to help with my joints so it's causing a bit of an issue having to sit with my foot up, but I know this is temporary.

I find It is very difficult to get the right treatment in general as the pain moves around my body. I do daily exercises which are from the Physio that works for a while then my body gets used to it and the pain comes back!

Is anyone in a similar situation? How do you manage the pain? I feel so tired from it all and really need a good nights sleep!

Thanks

Lisa

4 Replies

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  • My daughter was diagnosed with this and her bloods tested for lupus after a baby last year. She saw a consultant who said she was tired after having the baby and put her on vit D

  • Some people with Hypermobility Syndrome (now called Hypermobile Ehlers Danlos syndrome) don't have problems with pain, but others do. It sounds like you might need to see a pain specialist as you are already doing all you can with the physio.

    And well done for keeping up with the exercises, they are so important! I have hEDS as does my son, and I have had two surgeries on my feet in the last few years, so I sympathise with the crutches! It was such a relief to weight bare again!

  • Thank you for your reply I've not heard of Hypermoble Ehlers Danlos Syndrome, who diagnosed you? I have been going to the rheumatologist for the last few years, the painkillers I was on made me feel bloated and tired so I'm trying to manage with paracetamol. I will ask if I can be referred to a pain specialist to see if that helps.

    Previously I have been sent from department to department as no-one seems to know how to treat me. Hense I've landed up at rheumatology he is the one that referred me for surgery as I wasn't getting much out of the podiatrist and was given various orthotics which just seemed to give me blisters!

    I would just like to wake up (or have a good nights sleep first) and get out of bed without any pain. I can't remember when the last time that was.

    Sorry to sound so negative I just want to take control of this and make my life easier!

  • Once you have control your life will be easier, even if you are still in the same amount of pain!

    My son was diagnosed with hEDS by a paediatrician. My GP was happy on the back of that to say I had it as it is a genetic syndrome passed down the generations (usually) and i have several of the signs and symptoms, just not as bad as my son has it.

    Reumatologists are usually the ones that diagnose it but often it is found by physios or podiatrists as well.

    Have a look at the UK support group for more information to see how well you fit the pattern. ehlers-danlos.org

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