Recently diagnosed - what can I do?

Posted , 4 users are following.

Hi all,

I'm 22 and just been diagnosed with hypermobility syndrome by a rheumatologist. I've been struggling with achey joints for around 3-4 years and recently been starting to have back and abdominal pain. After years of visiting the GP for this and them being absolutely useless, I found a doctor who referred me to a rheumatologist. After basic tests he found I was hypermobile in both knees, both elbows and my fingers, did loads of blood tests they were all ok. 

I was wondering what exercise people do? I'm not very active and would like ot change that. I currently horse ride for an hour every week but thats about it. I work long hours and on my feet all day as I'm a veterinary nurse so fitting in exercise can be difficult as I'm usually fatigued! 

And what to people do pain wise? I have amitriptyline at night to help me sleep but in the day I have problems. Tired paracetemol, ibuprofen and naproxen but no effect really.

Thanks!

Vic x

 

0 likes, 2 replies

2 Replies

  • Posted

    Hey, I'm 21 I was diagnosed at 18. It's a really difficult condition to live with as treatments are supportive at best. I had to give up my job working in a supermarket because I couldn't even work on the checkouts without being in pain.

    Don't do any sort of high impact activities such as running, jumping, jogging, being on your feet for too long or even sitting too long. Try not to lift heavy things as long as you can help it because all of these things just speed up the damage done to your joints. Things like cycling and swimming help, building up muscle to take the strain off of the weak tendons and ligaments. Wear braces on your knees and elbows when at work or doing your horse riding to help stabilise the joints and stop them moving around too much.

    Pain wise, I'm in the same boat. On a bad day nothing really seems to help at all, unless I take strong pain medications but they leave me feeling drowsy and pretty grim. I find switching between warm and cold compress on painful joints, baths with relaxing herbal bubble baths help a lot in bad days.

    Really just try to work on muscle strength, if things get painful then stop what you're doing, let your joints rest in between work and hobbies and just try your best to stay active but not strained.

    Good luck smile

  • Posted

    I suggest trying to work on simple thing instead of trying to get active too quickly. Try to work on posture which helps with back and shoulder pain. Then move on to more strenuous excise to add to your horse riding. Pain medication always ask your doctor you might want to be referred to pain management.

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