Hypermobility syndrome

Olokia

I think I am quite mild as I can still go the gym and run and stuff (might hurt afterwards though) and my EDS specialist said it was ok if I have them. I do understand that I might get worse though.

rjh090384

my three year old just been diagnosed with hms. any advice?

Mupette

HM RRMS here, not actually found any drug work.. although a go on the tens machine helps for an hour relief if i am lucky

gemma1984

My daughter's OT mentioned in passing that she has hypermobility in her hips.

We are in cumbria

Any help or info would be very very helpful

We've applied for DLA after a diagnosis of global developmental delay, but am awaiting a response but now I'm wondering if I should mention this too?

sunnyone

gemma1984 wrote: »

My daughter's OT mentioned in passing that she has hypermobility in her hips.

We are in cumbria

Any help or info would be very very helpful

We've applied for DLA after a diagnosis of global developmental delay, but am awaiting a response but now I'm wondering if I should mention this too?

Your daughter has a diffrent thing than EDS/HMS, hypermobility in her hips is just that, her hips a bit more mobile than avarage.

shays_mum

Another sufferer here :wave:
The main forums that helped me were:
http://www.hypermobility.org/forum/index.php

and
http://www.ehlers-danlos.org/forum/

If anyone has the answers, its the collective knowledge in both of them that have helped me & my kids on this painful road......

HTH

Ps didn't know about the increased risk of miscarriages in EDS, but def know about the horrible, horrible SPD, but hey it was worth the risks xx

pps Proff Graeme is a good start for adult sufferers & Great Ormond Street Hos has a department where they are knowledgeable for kids.

moneybuster

rogerblack wrote: »

For DLA, any walking that the client can do, while suffering severe pain or discomfort is completely ignored.
At least in principle.
Proving that you are in severe pain may be an issue.

If it's accepted you can't walk at all without severe pain or discomfort, you are entitled to higher rate mobility.

here

DMG 61300
Severe discomfort must arise from the physical act of walking, but it is not necessary for the severe discomfort to first arise or to be increased by walking. If a claimant suffers from physical disablement which affects the physical act of walking, and which causes severe discomfort even when not walking, any walking accomplished despite the severe discomfort must be disregarded.
Quote:
R(DLA) 4/04.
The claimant had suffered serious multiple injuries in an accident, and his remaining injuries included a painful claw foot. He was refused higher rate mobility. An AT accepted that the claimant had a severe disablement which affected his mobility, but dismissed the appeal on the basis that the level of pain he suffered did not increase when he walked and he therefore did not fall within the terms of reg. 12(1)(a)(ii) of theSS (DLA) Regs. 1991.
Allowing the appeal, the Commissioner held that: Reg. 12(1)(a)(ii) requires that walking which cannot be accomplished without severe discomfort is to be disregarded; and although it is only discomfort related to the physical act of walking which is relevant to higher rate mobility component, there is no requirement that such discomfort must first arise or increase after walking has commenced. Where the claimant suffered from a physical disablement which affected the physical act of walking and which caused the claimant severe discomfort even when not walking, then any walking which the claimant was able to accomplish despite the severe discomfort was to be disregarded.

Trialia

For the people who have said you can have asymptomatic hypermobility syndrome - i.e. no problems at all - no, you can't, because if you have asymptomatic hypermobility, meaning without pain or any other symptoms, it is just hypermobility, not hypermobility syndrome or EDS-H. There's quite a noticeable difference. :P

GlasweJen

I was diagnosed with Marfan Syndrome years ago but they dropped that label and decided it was EDS (despite no major joint problems, just a few minor ones), then they just scrapped it altogether and called it dysautonomia. I think I'd be an example of EDS without symptoms but mostly because its internal organs that I seem to have bother with, blood vessels that leak, optic lens that keeps changing,
an apparently classic tiny jaw with loads of tooth crowding etc. but then I consider that a misdiagnosis. Will stick to dysautonomia.

Trialia

GlasweJen wrote: »

I was diagnosed with Marfan Syndrome years ago but they dropped that label and decided it was EDS (despite no major joint problems, just a few minor ones), then they just scrapped it altogether and called it dysautonomia. I think I'd be an example of EDS without symptoms but mostly because its internal organs that I seem to have bother with, blood vessels that leak, optic lens that keeps changing,
an apparently classic tiny jaw with loads of tooth crowding etc. but then I consider that a misdiagnosis. Will stick to dysautonomia.

You don't get EDS without symptoms. You can, however, get EDS without hypermobility, so maybe you do have it. Sounds like a crossover type to me.