hypermobility

[SarzWix]

I thought I had a high pain threshold til I broke my ankle

I'm really glad I know all this stuff now though - my kids shouldn't have to go through the same things I have through ignorance at least: an unecessary operation on my back at 16, years and years of dentist nightmares because the anaesthetic didn't work and they didn't believe it, etc etc.

[HayleyB]

Hi ya

CB was born with twisted hips and twisted feet. She was diagnosed HMDO a short whilte after, (I apologise 2 Zopis and one bottle collapso at present). Anyway she was always behind other kids, walking etc, we had her tendons cut in her toes after a couple of years as her toes were clawing.

She had problems running and could not do so until she was about 6. Surgeons gave us the option of having her hips and legs straightened by surgery.... breaking her hips and six month in plaster (in hospital for aesthetic sake) or go down the route of Physio hoping for the best.

We felt that her ungainly walk and turned in toes were possibly curable by non drastic means so went the physio and footwear doctor route.

Hydrotherapy, physio and home exercises on a big ball and wobble board, along with special shoes from a chiropodist helped her to the extent she ran in her first race at 6 (coming second last......... but hey).

Now she's 12 and only through clumsyness and her twisty sort of walk she does sometimes and her slightly knock knees you'd have no idea,

We are so glad we did not subject her to the year of hell in hopistal, although she did moan a bit about the physio.

One thing. Make the school aware, they will make sure the child does not do anything that will force tendons into a direction that is not normal...

[janeyo]

It takes 2 full shots of morphine to have any effect on me Rhona, and it took 3 to get me into the MRI machine when my back was at it's worst. I also have to get to the point of passing out, with tingly lips before gas&air has any effect at all... So yes, it does seem to be part of it. They think it's something to do with the way the pain message travels to the brain, which is different, or stronger. The research is still a bit sketchy! That book that I linked to had lots of this info in it. Also some of the research which links HMS to a higher incidence of 'phobic states' is mentioned in there.

so when I screamed at them in hospital ' the gas and air is RUBBISH' I was right

[SarzWix]

Yup, I seem to remember screaming something similar myself...

[ailsasyl]

me too....child birth and when they gave me gas and air for my ankle whilst they were trying to x ray it kept taking till i felt very sick,

Sarah is low blood pressure part of it they always seem to have to monitor me if I am given pain relief, pregnancy etc?

[SarzWix]

Postural orthostatic tachycardia syndrome - Wikipedia, the free encyclopedia

That ^ ^ is a part of it according to anecdotal evidence in the HMSA forums.

Basically, because what it affects is the 'make-up' of the collagen, any bit of you that is made up of collagen or supported by collagen could be affected, and the research is very patchy to say the least!
I know that when hypermobile kids get braces for their teeth, more often than not they've almost finished moving within the first month!

[Rhona]

Blimey! I've recently learned I have bradycardia - slow pulse, and I've always had exceptionally low blood pressure. Wonder if that's all part of it then?

You're really learning me things.

[SarzWix]

I think I'm getting tangled up with my A-ffects and E-ffects...

[HeyWayne]

I think I'm getting tangled up with my A-ffects and E-ffects...

Another symptom of hypermobility?

[SarzWix]

It wouldn't surprise me

[elsie-scot]

Hypermobility Syndrome: Diagnosis and Management for Physiotherapists: Amazon.co.uk: Grahame Keer, Rosemary Keer, Rodney Grahame: Books

I have this book and strongly recommend it. I have hypermobility and I am a physio ( not working just now). Worth finding out (in as nice as way as possible) if the physio who saw your son has much knowledge of hypermobility as I have seen some children in past (not as young as your son) who have been given poor advice. And yeh the support shoes are pretty cool now

[SarzWix]

I have seen some children in past (not as young as your son) who have been given poor advice...

Ain't that the truth?! But, it is getting better these days I think.

I had a terrible time at 16, and even at 30 odd when I had a diagnosis, the orthopaedic surgeon refused to acknowledge that being hypermobile had anything to do with my back... That book was a life saver for me, and the ortho man was very lucky not to have it shoved up his left nostril!! (Thank heavens for Prof Bird at Leeds, whose physio and occupational therapy team got me functional again )

There's a new book showing on Amazon for pre-order, by Beighton/Greene/Bird which I would just LOVE to get my hands on, but at £75! it's a bit beyond my budget

[elsie-scot]

Ain't that the truth?! But, it is getting better these days I think.

I had a terrible time at 16, and even at 30 odd when I had a diagnosis, the orthopaedic surgeon refused to acknowledge that being hypermobile had anything to do with my back... That book was a life saver for me, and the ortho man was very lucky not to have it shoved up his left nostril!! (Thank heavens for Prof Bird at Leeds, whose physio and occupational therapy team got me functional again )

There's a new book showing on Amazon for pre-order, by Beighton/Greene/Bird which I would just LOVE to get my hands on, but at £75! it's a bit beyond my budget

At least people are a bit more aware of it now. You were lucky to get under Prof Bird's care

Bet it'll be a good book, but unless it appears on the bookpeople list, I won't be buying it!