Hypermobility Syndrome

iwannanicerlife

They keep telling me that physio is the main and most important thing but it is hard keeping the momentum and to an extent, fitting it into every day life!

All we can do is keep plugging away and hoping that they are right!

We have seen the podiatrist locally and have insoles which my daugher wears within her boots. However, both GOSH and our local rhummy aren't impressed with these and we have been told that the GOSH team will look into these at our next visit ....

shays_mum

iwannanicerlife They keep telling me that physio is the main and most important thing but it is hard keeping the momentum and to an extent, fitting it into every day life!

All we can do is keep plugging away and hoping that they are right!

We have seen the podiatrist locally and have insoles which my daugher wears within her boots. However, both GOSH and our local rhummy aren't impressed with these and we have been told that the GOSH team will look into these at our next visit ....


Oh thanks for that!, i will see what GOSH have to say about her insoles, as the podiatrist said basically there is nothing they can do apart from the hard grey plastic insoles

starchild1972

I have HMS with secondary FMS, all 4 of my kids have HMS, my cousin has HMS and so has my neice. We have all been diagnosed in the past 3 years.
My cousin does kickboxing, my neice is always dislocating, I suffer more with the fibro, my eldest can't do athletics due to ankles, my youngest could work for Jim Rose's circus!

I was diagnosed by my (private) physio/acupuncturist. Cousin and neice by rhuemy, eldest by GP, youngest during aspergers assessment! and other 2 are just "well bendy" as DD2 puts it.
I have never dislocated but apparently that is because my muslces are so tense they keep everything in place.

See, I kew I shouldn't relax too much.

As for teh casualty/EDS story line, well as we continually fight for equality, why can't someone with a health condition/disability be a junkie/bad guy etc? Having a health condition doesn't make us angels you know!

mimi1604

Hi, this is the first time I've posted, so please bear with me.

My daughter was perfectly fine until she was 12, when she woke up one morning with a swollen ankle which was non weight bearing. She hadn't fallen or anything, just woke up like that. A month later she was improving, but then went over on her other ankle and fell down the stairs, so docs thought her pain was all down to this. She continued deteriorating, and following GPs referral to physio, she was then referred to a paediatrician, etc. Finally, after 11 months where she couldn't walk at all and had to crawl around home (and couldn't get to school), she was diagnosed.

For the first term, the school periodically sent homework to do, but this was very hit and miss. After an argument with her Head of Year, he informed me that unless we had continual medical certificates that he would get the Educational Welfare Officer involved. I then googled this, and found that each school has one attached to them. I left and message at the school and she got back to me. Well, we've never looked back! Even before the diagnosis, she managed to arrange a meeting with the School Inclusion Officer who agreed to provide a home tutor who works in conjunction with the school. We are three years on now, and she attends school twice a week for two hours (Council provide transport), and has a home tutor three times a week. The School Inclusion Officer has also loaned us a laptop for her to use at home and school, as writing can cause dislocations in her fingers and wrists. As the constant pain makes her tired, she manages with an average of two hours a day education. However, one on one tuition gets a lot of work done!!! The pain is definitely real, which drains you and medication side effects can also be a problem. Hope this helps a bit.