Hey Newbie here and hoping I am in the right place!
Just looking to connect and chat to other people with Hypermobility Syndrome/variations thereof really!
I'm 22 now, informally diagnosed at 18 following an incident with my knee which demolished it. Ligaments, muscle, cartilage, you name it, he wrecked it. After a year on crutches, begging various doctors and consultants to take it seriously (and being told I was being a 'typical lazy teenage girl' in the process ), I finally got an MRI and consequent surgery to pull my kneecap back into place and sort the cartilage out (the ligaments had knotted themselves back together by this point).
It was only at my follow-up appointment that a wonderful doctor actually listened, did the Beighton test and found I scored every point and, seeing as I was suffering with a bad back, a twisted pelvis, constant dislocations in my fingers and toes and less frequent but still prevalent dislocations in my other joints, he was fairly shocked I hadn't had more help sooner.
Only thing is though, I kind of let it slide after that; a combination of being a bit scared to hear how bad it could get for me and just life getting in the way in general. I haven't had a formal diagnosis and I haven't really give much consideration to how this could affect my life until the last couple of months.
Although I have always suffered with the pain in my joints, hands, ankles and knees mainly, it's getting worse and I am finding it easier and easier to dislocate (or at least stretch that bit too far) my joints, especially my shoulders, which cause me no end of pain. I can't stand for longer than half an hour without significant pain and suffering terribly the next day, a night out is always cut short by my knees causing me too much pain, I struggle to do the hours I am contracted (7:30-5 5 days a week plus a half day every other weekend), I go through phases of chronic fatigue (I can sleep for over 12 hours a night and it still isn't enough!), I'm terribly clumsy (I fell down the stairs twice in a week, breaking ribs and my elbow)... In short, it's really affecting me.
Basically I am just wondering how best to proceed from here. I am aware I need a formal diagnosis but what can I expect after that? Plus how should I go about getting a formal diagnosis?
If nothing else, I just feel like I would like to talk to other people about their experiences and how they help themselves, how it affects them day-to-day. I used to do pilates and cycle but tbh I don't think the cycling helped at all and unfortunately my pilates instructor retired and I haven't gotten back into it!
Sorry for the essay, just getting it all written down has helped a bit!
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General health
Hypermobility Syndrome
5 replies
user1474625604 · 23/09/2016 11:44
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