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Posted: Sat Jun 16, 2007 7:24 am
by baldowrie
Deb I don't know if you have seen it but there is a wealth of information on the HMSA web site
http://www.hypermobility.org/
'Pacing' is the best this I can say to you. Do jobs slowly and rest plenty of time, ok it may take you a week to do something that will take an able person a day but so what?
Stretching, mmmmmmmmm you need to be very careful with that as you are likely to displace a joint. You also need to find the best level of exercise for yourself, too much and you start popping joints!
And yes those braces and splints are wonderful aren't they!
Quick question, is your GP on side....do they know about hypermobility? Not as silly as it sounds as many don't!!!
Posted: Sat Jun 16, 2007 8:55 am
by farmerdrea
No, sorry, no photo as yet... perhaps in spring, when things aren't just yucky winter ugly?
I have long beds using 12 nice, tight bales, 1 at either end, and then 5 on each side. Underneath, I layer with cardboard and newspaper, as I am also trying to kill twitch grass which infests our garden area. Nice, long bed, just wide enough to tend easily.
I have one of those kneelers that is also a seat, and has nice handles for getting up.... until I left it in the rain one afternoon, and the mdf in between the foam pads disintegrated and the screws fell out!! NOT a garden-friendly (ie ME the sloppy gardener!) design!
Cheers
Andrea
NZ
Posted: Sat Jun 16, 2007 10:25 am
by glenniedragon
Cheers Farmandrea long thin beds so I can reach the middle, I'll be able to give a bale bed a go I think!
baldowrie:It was a physio who first noticed it, so I was sent back to my GP by a bona fide professional following up by letter so she is actually quite good. I've always been 'bendy', I used to pull the splits and put my feet behind my head for pints when I was younger (but thats a whole other story!) it really came to light as a problem during my pregnancies as the ligaments in my pelvis were so soft my symphasis pubis moved (yuck) and thats when I had the first instensive lots of physio.
My Dad's flexible despite his 17st frame, and my Nan could put her hands flat on the floor without bending her knees right up til the day she died, so I think I can safely bet thats where I get it from. Thanks for the link they are a real mine of information! Ta much m'duck. Have you had to re-educate your GP? There's a lot of us out there-and I do think that if I had been diagnosed after my initial injury at 19 I may well have chosen a different career path and avoided creating the back condition I'm suffering with now, but hey ho
kind thoughts
Deb
Posted: Sat Jun 16, 2007 10:44 am
by baldowrie
I used to do 10 mile runs every day as part of my training......buggered my knees up, had I known..............well that's hindsight
I have had to 'educate' some of my GP's, some will listen others are hollier than god (or should that be holier

) and they are the doctor and if they have never heard of it it doesn't exist!
My GP is great!
She said I know very little about it, you have it so you are the expert!!!
I just ring up the receptionist and ask for what I need and who I need to see, and bingo I get referred. A lot less hassle than battling the old stick the mud GPs.
I too can trace it back, but along my mothers side to my great grandfather.
Both my children have is, my son is worse. Men/boys do tend to get it worse, and it's not man flu

syndrome
HMS is VERY under diagnosed, mainly because GPs (the first point of call) are ill educated about the syndrome, they have half a page in their medical books about it. It rarely shows on xrays, unless arthritis or total dislocate that does not relocate, so therefore the patient is a assumed to be an hypochondriac!!!
If you feel you need 'talk' to someone who really knows what you are saying, feel free to PM me...be warned, I don't suffer whinging or moaning and am blunt about it

mainly because I get on with life and live it, not live the HMS.
yep the physio/OT/GP do tell me off for doing too much
and dislocating ribs is a sore, but weird sensation!
Posted: Sat Jun 16, 2007 12:32 pm
by Millymollymandy
There is a lady in Scotland who posts on A Country Life forum who has I think the same condition. Is that you Baldowrie?
Posted: Sat Jun 16, 2007 12:38 pm
by baldowrie
oh shucks I have been rumbled

Posted: Sat Jun 16, 2007 12:41 pm
by Millymollymandy
Why didn't you say that was you? Hello! (Mind you I haven't been on that forum for yonks because it suddenly went really slow and I was too impatient to wait!)
Posted: Sat Jun 16, 2007 12:53 pm
by baldowrie
I didn't say, at the time, because I was being stalked/groomed.....I wonder who
Of course the person involved has told all it was me

, but I could tell a few tales about those who believe them too as was told to me by the stalker, they weren't their best pal!
My **** off mail hit home though, eventually!
ACL has got quicker, however at present the ISP has messed up the forum and they are trying to fix it.....I do still post, under another name for the above reasons.
Posted: Sun Jun 17, 2007 6:03 am
by Millymollymandy
I'm sorry to hear that.

I had a brief look in at ACL yesterday and it has got a bit faster than before thankfully!
Posted: Sun Jun 17, 2007 7:42 am
by baldowrie
all sorted now, so not to worry.