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Hypermobility-What if you were told....?
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Singlesue, i know the guilty feeling, i have passed on heds to my dd & i feel so bad
, my mum has a muscular dystrophy gene running thru her family, which she has - not even been tested for that yet, too much too soon
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I have tried to explain not to over do things, but dd is only 8 & pays no heed, so at nights the paracetamol comes out as her pains kick in - such is the nature of this condition.
Bluebluecow, pregnancy was horrendous had severe spd from 11 weeks, had to have 2 c-sections & have not really recovered from then. I just carried on, meaning to get myself sorted till my body had had enough & then all the specialists have taken over - i am having a lenghty mot if you like!. Sorry to hear about your extended troubles, are you having any physio or anything?
Thanks jojo lolx
No one said it was gonna be easy!0 -
Nope no physio, had it but if I did phsyio, on quads, it pulled my knee cap upside down lol. I have a new consultant and he thinks he may be able to do an op on the knee. He wants to take out the knee cap, make a new grove (my grove is flat too) then use donor bone to build back of knee cap up, put back in and tighten everything up, fingers crossed, had MRI, but if I have arthritis(and he thinks I may have) in the knee he cant do that op.
In pain today, doesnt help as I droped the iron on my foot when my thumb dislocated. Trying to get a grant for Uni, I hopefully start in sept and a laptop would help, as my thumb dislocates during writing.
Its hard with the kids, and with the guilt, I feel sorry for jake on hot days as his boots get very hot on him, and the fact he is always covered in bruises. he cant walk far so goes in the buggy lots, get looks as I have the 5yr old in buggy and 3yr old waling lol. I love the buggy as I can use it as a zimmer frame lol
Liz0 -
bluebluecow wrote: »In pain today, doesnt help as I droped the iron on my foot when my thumb dislocated.
Ouch! I hope you're ok.Its hard with the kids, and with the guilt, I feel sorry for jake on hot days as his boots get very hot on him, and the fact he is always covered in bruises. he cant walk far so goes in the buggy lots, get looks as I have the 5yr old in buggy and 3yr old waling lol. I love the buggy as I can use it as a zimmer frame lol
Liz
Is Jake able to get a wheelchair from the NHS? or is double buggy an option? There are many other options too. (people on family and relationships board can advise you about this)Sealed pot challenge #232. Gold stars from Sue-UU - :staradmin :staradmin £75.29 banked
50p saver #40 £20 banked
Virtual sealed pot #178 £80.250 -
Thanks, apparently occupational health dont think he needs a buggy, lol. Luckly I brought a baby jogger mini city, they make s/n buggys so nice and strong and big, It also has a hood that comes all the way down great when things get to much for him with his autism, as he can hide
liz0 -
Hi,
Has been very interesting listening to everyone.
Amazing how everybody gets such different treatment. I have suffered for years with Hyperbobility. Last flare up was oct 2009 and still going on. Had to leave work in December due to extreme constant pain and lack of mobility. My GP doesn't recognise Hypermobility as a problem. Therefore, will not refer me to Consultants or pain management. I just get given repeat prescriptions for hundreds of tablets at atime. When i say they do not give pain relief and ask to try something else, just get told that i am on very strong medication already. (Tramadol)
Eventually went to physio for arthritis in spine, this was not the cause of my problems, the hypermobility. People without the condition do not understand that you can get pain anywhere in your body.
My main reason for writing was, that today, i had my first core stability class (pilates) at the physio. You only get 6 sessions, but thought others might find this helpful. Am in such a dreadful state tonight, hopefully things will improve before the next class.
My 8 yr old daughter has suffered since she was 2 with the condition and often screams out in pain halfway through a conversation. When i take her to GP, she gets told that there is nothing wrong with her.
Life is so difficult, i am a single mum and somehow need to get back to work to pay the mortgage. I am dreading it as being out of work since december has not helped.
I do wish that these professionals who say there is nothing wrong with us could actually experience the pain sometimes.
Sorry for rambling on.
Good luck to all0 -
Ellabelle, I recommend you switch GPs, and soon. Sounds like you managed to get a stubborn and ignorant one - which, alas, can happen.
Good luck with the next.
Homosexual, Unitarian, young, British, female, disabled. Do you need more?0 -
Thanks, definately need to. More for my daughters sake than my own.
Thanks0 -
I was very interested to read this thread. My youngest daughter was diagnosed with hypermobility about four years ago. I felt guilty when she was diagnosed because I used to get frustrated when she would complain about pain even when she had a tiny knock. When I found out that she was experiencing more pain than other people would it made me feel really guilty.
She wears orthotics in her shoes to stop help her walk and will have to continue to wear them through being a teenager. Luckily she is a tomboy and not interested in girlie shoes so hopefully she will continue to wear them.
I was so sorry to read about other's experiences with the pain cause by hypermobility. Luckily my daughter's pain is very minor and doesn't happen too often.
I hadn't realised that hypermobility can lead to people experiencing so much pain. I hope you all get the help you need.0 -
rolopolo, unfortunately with severe hypermobility syndrome - more or less synonymous with hypermobility type Ehlers-Danlos syndrome - it is very hard to get decent help in this country. There are only two NHS connective tissue clinics as far as I know and the expert belonging to the clinic in Chapel Allerton, near Leeds, is retiring at the end of September. The other is at Guy's. So... trouble. Because a good many PCTs won't refer people that far out of area.Homosexual, Unitarian, young, British, female, disabled. Do you need more?0
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rolopolo, unfortunately with severe hypermobility syndrome - more or less synonymous with hypermobility type Ehlers-Danlos syndrome - it is very hard to get decent help in this country. There are only two NHS connective tissue clinics as far as I know and the expert belonging to the clinic in Chapel Allerton, near Leeds, is retiring at the end of September. The other is at Guy's. So... trouble. Because a good many PCTs won't refer people that far out of area.
have you tryed to get refered to down london if they will not then would you do private for 200 but you can still get any treament via nhs after 1st app, i heard something about a 2 weeks of staying in hospitail doing intense physo and hydro down there , i been told they will refer me out if iam not happy with the reumy locally i no you have to fight for everything just annoying that you do but think you can under the gov right to be treated where you like think it would really help you0
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