by Spireite » Mon Jun 27, 2011 10:26 pm
Thanks Kate for this. It is quite a good article that can be shoved at an open-minded Health Care Professional. Of course, it was published in 2005 and we have moved on since then.
My twopenneth:
Page 1:
I wish it mentioned frequent subluxations, as well as pain and sprains to reduce the common disbelief we encounter. Physios in particular need to be educated on this to reduce their risk of injuring their HEDS patients.
Why do the questions to ask have to focus on childhood and teenage years? They miss out on those of us developing HMS=HEDS in middle age.
Was I supple in my teens? No quite the opposite. I first became supple in middle age.
Was I ever able to get my hands flat on the floor when my knees were straight? Yes in middle age. In childhood and teen years I could only just get past my knees.
Did I have any knee problems in my teens? No. I did pre-teen and post-teen but it seems the teen years were a golden era for my knees.
Did I bump into things/fall over a lot as a child? No not at all. I was very sporty. I first started collapsing in middle age.
Did my joints click a lot? No, but they do now.
Did I fidget a lot as a child? No, but I have since middle age.
But I did go over my ankles a lot as a child so is that enough to diagnose hypermobility (which is asymptomatic) or do they mean hypermobility syndrome? It doesn’t say how many ‘yes’s are needed.
I have to take exception at I feel as if I can’t hold up my head expressing just the patient’s anxiety and no it isn’t bizarre or remotely funny when it is you. When is any Health Care Professional going to accept this as fact and stop rubbishing it? The author should have come round my house 10 or so years ago and helped me to the toilet and get a bit of a meal. She would have found me lying on the floor all day. When you can’t hold your head up, beyond a minute or so, you can’t do anything including going to the toilet or get something to eat. This was a double whammy when autonomic dysfunction from the neck caused diarrhea. Not being able to hold my head up was the reason for ambulances being called and being admitted into hospital for 10 days and then six months off work and lots more. The first sign that anything was wrong was when my head weirdly fell (in front of witnesses) at work. (Only for my GP to laugh and tell me to take Gaviscon.) (Now if she came round my house today, she would find me sawing up a tree but not thanks to physios, rather despite all the damage done by many physios.)
Page 2:
It is good to read there is not always joint effusions in the acute stage.
It doesn’t recognize HMS can start in adults. Just because you weren’t supple as a child does not mean you can’t be hypermobile in middle age as I’ve been told many times.
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It would be nice to see explicitly that you can have all those problems at the same time rather than the usual one only that is generally magically allowed.
Why only teens for getting hands flat in forward flexion and ‘crab’? It is more unusual for adults to be able to do that, so ask about that.
There should be the caveat that you can only do ‘crab’ if your wrists haven’t subluxed.
Throughout:
Need to distinguish between HM which is asymptomatic and HMS which comes with symptoms.
Page 4:
I strongly agree with the statement that it is easy to exacerbate the patient’s symptoms and this needs to emphasized at the start and the finish on any document scarily entitled ‘Hands On’ where HEDS is concerned.
Be careful about getting a heel raise without correcting any pronation problems. This could exacerbate symptoms, as I found to my cost, if the leg length difference is functional rather than actual.
Joint group leader for South Central (Bucks, Oxon, Herts)
, please see the above.
to everyone
