Hypermobility-What if you were told....?

Trialia

shays_mum wrote: »

Hi Trialia,
Didn't know there was one at Guys??!, is this connected to UCH?, thanks!

Well, Guy's does have close ties to UCLH, but as Ash said, the hypermobility/connective tissue clinic is at UCLH proper. Professor G. used to work at Guy's, you see. It's the fibromyalgia clinic that's at Guy's - that was a brainfart on my part! But there are about as few of those.

shays_mum

Thanks guys!, thought that might be the case, will def look into the FM clinics, anyone been?

Trialia

shays_mum wrote: »

Thanks guys!, thought that might be the case, will def look into the FM clinics, anyone been?

Not me My doctors won't refer me, I'm told the PCT says they're too far out of area. So all I get is a pain management specialist, who isn't, unfortunately, helping me very much.

ash4becks

wondering what the heck is going on, has anyone else with hms had there whole body swell up including face, i no i have overdone this weekend bigtime as i went away with charity i help with hell of a lot of siting down behind the stall but trying to fight to try and be normal and put in the normal amonut of really hard work that the events takes but never had this before and i really dont like it iam really tired,

is this part of HMS or not, iam so tierd and ache all over standing is so sore even with the painkillers , GP has said about M.E or fibromyalgia i havent heard of the consultant yet and not sure if i should go to G.P today with this or see if it goes

Indie_Kid

ash - if it's causing you that much trouble, please see your GP.

shays_mum

Hi ash4becks, hope your feeling better?, i think the heat combined with the weekend don't help!
My face is swollen all the time - one big moon face , but hey!, it irons out all the wrinkles
I think a trip to the gp might help things, otherwise lots of rest - my fingers are so swollen can barely type , till the next time get better soon eh! x

candygirl

My 3 year old nephew has just been diagnosed with HMS, but also has problems with his eyes which they thought at first was nystagmus but now aren't sure:cool:
Are there any associated eye probs with HMS?I am doing all the research I can as his parents are in denial at the mo, and I know he will need all the help he can get at school:(:(

Indie_Kid

candygirl wrote: »

My 3 year old nephew has just been diagnosed with HMS, but also has problems with his eyes which they thought at first was nystagmus but now aren't sure:cool:

I have Nytagmus; but haven't heard of any links between this & HMS. It's possible (which was what doctors thought for 17 years for me) that there's no cause for his sight problems.

I do know a few people with HMS & nystagmus though.

candygirl

sh1305 wrote: »

I have Nytagmus; but haven't heard of any links between this & HMS. It's possible (which was what doctors thought for 17 years for me) that there's no cause for his sight problems.

I do know a few people with HMS & nystagmus though.

Thanks for that hun.I'm trying to get all the info I can:D:D

Adaline

candygirl wrote: »

My 3 year old nephew has just been diagnosed with HMS, but also has problems with his eyes which they thought at first was nystagmus but now aren't sure:cool:
Are there any associated eye probs with HMS?I am doing all the research I can as his parents are in denial at the mo, and I know he will need all the help he can get at school:(:(

Hi Candygirl,

I have HMS, and Ehlers Danloss Hypermobility. I've had eye problems since I was a child, very short-sighted and with a divergent squint in both eyes. I had the squint corrected by surgery some years ago, but still have problems focusing (my eyes move all the time). I was told this can happen with hypermobility. Also, I was told there was a bigger increased risk of a detached retina. It'd be worth mentioning the HMS to the eye specialist, if they've not been told. Hope that helps!