Hypermobility help

Trialia

Sue, hypermobility syndrome/HEDS is a major risk factor for early-onset osteoporosis and arthritis due to the wear and tear on the joints, in case you didn't know that.

Serenity, my hips and shoulders are my most frequent subluxations as well. It's one reason I walk with a cane - I can keep my balance when reducing one of my hips if I have that, if need be. I've subluxated and 'gone over' on both my ankles today alone - which hurts when it's unexpected

SingleSue

I was aware of the arthritis link Trialia (and have been for some time) but the doctor wouldn't hear of it which is why he wouldn't even look at xraying my back for arthritis until I was 30. He kept saying only athletes who trained many hours a day develop arthritis before 30 (despite me pointing out juvenile arthritis)...and what did I do from age 5 to nigh on 16? Yep, trained at least 6 hours a day in ballet :whistle: on top of also being very bendy.

Wasn't aware re osteoporosis though....

MARKZ123

Well i went back to my doctor to tell him what the biomechanic said and he still seemed very disbeliveing. I mentioned artritus and he said at the age of 37 everyone has it, i think im going to see a different dr.
Also i dont know if its connected with my problems but ive always had a really weak neck it just feels like my head is balanced on my shoulders.
Next biomechanic appointment in 7 weeks this time i will be prepared with lots of questions.
I telephoned the physio dept and they said assesment appointment will be roughly 4 weeks.
Any advice on what questions to ask. Are there any tests for eds etc

johnwayne

Mark definitely see a different GP.

It can be fairly hard to get diagnosed sometimes. When I told my sons paediatrician that he kept complaining about his legs hurting and that they kept giving out she said that it was growing pains!! The first time he met his occupational therapist she asked why no-one had mentioned Hypermobility in his referal, we didnt even know what it was then! She refered him to a consultant who diagnosed it.

If it wasnt for my son's consultant I wouldnt have known that I had it either. Even though my then gp wouldnt listen.

I am not really sure about which questions to ask but I think the best place to ask would be the forums on http://www.hypermobility.org/forums.php

If it is left then it can get much worse & I am a prime example of that as I know have to walk with a stick & can only walk a short distance without experiencing major pain.

Good luck

SingleSue

Johnwayne - That is exactly what I was told with my eldest son! I kept taking him up but was always told "It's growing pains" or "He just overdid things"...it was only when I took him up about his inability to gain weight (or even keep weight on!) and his very mobile knees (he can spin his knee caps almost right the way round, round the side of his legs etc - eugh!) and to a different doctor, that we finally started to get somewhere.

serenity79

I remember going to my GP from around the age of 8 in pain, only to be told that it was 'growing pains' without him even examining me. I've always known I was bendy and I was told by a neurologist that I was hypermobile in 2007, unfortunately he either didn't know or didn't think to mention that this can lead to problems (he already knew I suffered greatly with pain) Since being diagnosed with HEDS in January I have been able to look back to so many incidents during my life which seemed really odd at the time but now make sense, like breaking my foot aged 11 without doing anything (literally, I was just standing on a step and it broke) to dislocating my coccyx in what seemed like a simple fall. Or the time in Junior High when someone ran into me and pushed my right knee completely backwards and no one could understand how I was able to get up after a minute and brush myself off when they were ready to phone the ambulance for me

Also when I mentioned to my GP that it felt like my hips were 'moving out of place' (before I even knew what subluxing was) I was told that 'hips can't do that.' Em, yes they can.

It's so important to keep fighting to see a specialist to get the correct diagnosis. I feel like if I had been diagnosed earlier I might have had a better prognosis, like johnwayne I use a stick and can only walk short distances, other times I use a wheelchair. I'm in constant pain. If I'd been given physio from the age of 8 when I first started noticing the pain, perhaps things would be different today.

metalgal

i was at my rhuematologist yesterday, i see him for hip problems long story, and he commented on the way i held my hands together, my thumb was strange and he gave me a full body examination and said i had hyper mobility. I thought it was just bendyness until i read above hopefully i wont develop problems.

Trialia

*nods* I've been in pain around my ribs and most of my joints since I was about seven or eight, and I was told constantly that it was "growing pains", right up until I was finally diagnosed in my early twenties. Maddening...

Djonma

ok ok ok!

Ask your GP to refer you to Professor Rodney Grahame at UCLH (London), Rheumatology department.
He's one of the world leading specialists in a condition called Ehlers-Danlos Syndrome, and is a leading expert in hypermobility.

(This is for Mark, since he's in Berkshire, which is where I am, and I'm under Prof G).
For other people - there's a centre in Leeds and Glasgow, but the Leeds specialist is retiring this year, so it's being dissolved, and I have NO idea what's happening. That guy is called Professor Bird though.

You may need to see a Rheumatologist locally to get referred, but I just asked my GP to refer me and that was fine.

I have EDS, and it is a nightmare. And you can get DLA with it, I'm on DLA, though I have multiple other conditions as well.

Nicola

serenity79

Djonma wrote: »

Ask your GP to refer you to Professor Rodney Grahame at UCLH (London), Rheumatology department.
He's one of the world leading specialists in a condition called Ehlers-Danlos Syndrome, and is a leading expert in hypermobility.

(This is for Mark, since he's in Berkshire, which is where I am, and I'm under Prof G).

I wholeheartedly agree. It was Professor Grahame that diagnosed me. My local rheumy seemed almost insulted when I mentioned him, as if I was questioning her HMS diagnosis, but I knew from my research that he was the man I wanted to see. I decided to go privately to see him, as I mentioned before. Straight away he put me at ease, made me feel like there was no one more important than me that day, he didn't rush me (in fact he spent an extra half hour with me) and he then diagnosed me with HEDS, Fibromyalgia and autonomic dysfunction, and he wants me to get further tests for postural orthostatic tachycardia syndrome and I have to see a cardiologist (Prof G couldn't believe I'd never had a heart check) It's the best money I've ever spent.

Djonma wrote: »

I have EDS, and it is a nightmare. And you can get DLA with it, I'm on DLA, though I have multiple other conditions as well.

Nicola

I've just applied for DLA, so fingers crossed. I have a few other health issues besides the ones listed here, so I hope to get something, I have major mobility needs and also a lot of care needs. I've got sheets and sheets printed out of my needs sent away to them, and if I get turned down I'll be heading for a tribunal, I've had independent advice that I should at least be on HRM and MRC, if not HRC (I don't think I'd get that though, I'd be satisfied with HRM and MRC)