Hypermobility help

MARKZ123

well i have just had an appointment with a different DR at the surgery today, she seemed a lot nicer and even listened and even knew a bit about HMS / EDS. one of the thing i wanted her to check was my rectal prolapse ! (only minor) she didnt seem to know about the connection with hms/eds so asked if i could print out the info for her to see.which ive now done. ive got my appt through for physio on 12/4 and next biomechanic appt in 6 weeks. she told me to see how physio goes and to go from there.
i think ill wait until i ask for referral to see prof g.

serenity79

I'm so glad you found a more sympathetic Doctor!

The only thing I would suggest is that if you DO have HMS/EDS, then your physiotherapy should be tailored around that. So keep that possible diagnosis in mind when you do go and see your physio and make sure they don't over-extend any of your joints while working with you, as this can happen really easily with the true consequences not coming to light until later. Also, it can take a while to see Prof Grahame on the NHS so you might want to get yourself on the waiting list anyway.

Best of luck.

Djonma

It took me about 6 months to get to see Prof G on the NHS.
I couldn't have afforded to do it privately though.

Physio is a massive thing - if they don't know about EDS they can make you WORSE.
I had a physio finally put me in a wheelchair, because despite my telling him continuously that the exercises he was having me do on my hip were making it worse, he refused to believe it, and I stopped being able to walk at all because of it.

This is why a diagnosis is so helpful; you then specify that you need EDS / HMS understanding physios.

Strength training, which is what most physio is, can make EDS a LOT worse.
Be very careful.

Nicola

jexysbird

Hi,

I came across this thread, purely by chance last night and have been reading more about it on the HMS site (link given in a previous post), after 4 years, many doctors, physios pain clinics, this may be the diagnosis that we are looking for. Having read about the syndrome, it all adds up. For those of you who have seen this Professor G, as he seems to be known, do you mind me asking how much you paid to see him privately and where you saw him/how long did it take to see him and what did he do when you saw him??

Please PM me if you feel more confortable doing so.

Many thanks in advance - any help/details would be much appreciated.

GlasweJen

You can't get DLA for any condition other than having no legs or being deafblind. You only get DLA for care or mobility needs not for being diagnosed with a medical condition. Two people with the same medical condition could get totally different awards.

serenity79

jexysbird wrote: »

Hi,

I came across this thread, purely by chance last night and have been reading more about it on the HMS site (link given in a previous post), after 4 years, many doctors, physios pain clinics, this may be the diagnosis that we are looking for. Having read about the syndrome, it all adds up. For those of you who have seen this Professor G, as he seems to be known, do you mind me asking how much you paid to see him privately and where you saw him/how long did it take to see him and what did he do when you saw him??

Please PM me if you feel more confortable doing so.

Many thanks in advance - any help/details would be much appreciated.

I don't mind posting publicly, it may help others on this forum too.

I paid £300 for my consultation. I got my appointment through in a matter of weeks, I probably could have been seen even sooner only I had to sort out flights and hotels. Although it's a lot of money for me, it was worth it in the end, as I don't think I'd ever have got there via the NHS, being in Northern Ireland (local rheumy didn't seem to want me to go) and the appointment is usually for one hour although my appointment actually lasted 90 minutes. He won't rush you out if he feels he's not finished with you. He's very thorough and very patient, and he has a very calming presence. He went through lots of different things with me, Beighton score and Brighton Criteria, he checked for Marfanoid features by measuring me (turns out I had that), for scoliosis, he also assessed me for autonomic dysfunction (which I'd never heard of) which he also diagnosed me with and has given me names of other specialists to see about that and my IBS. I had brought a list of things I wanted to talk to him about, but ended up only referring to it twice as he'd already covered everything himself. I can't recommend him highly enough.

I saw him in The Hospital of St John and St Elizabeth in London, which is literally a minute away from the St John's Wood tube station.

Best of luck xox

Djonma

GlasweJen wrote: »

You can't get DLA for any condition other than having no legs or being deafblind. You only get DLA for care or mobility needs not for being diagnosed with a medical condition. Two people with the same medical condition could get totally different awards.

Umm... I have legs.
I can even walk a small distance.
I get the higher mobility rate, because it HURTS to walk even one step.
I have an electric and a manual wheelchair.

DLA is weird...
They tend to turn you down initially, I think hoping that you'll just despair and not appeal.
They often award on appeal though.

Make sure you take lots of care filling in the forms, and definitely appeal.
Make sure your GP is on your side, and knows you're applying.

As for not getting it for conditions... I broke my back and couldn't walk, and they wouldn't give me anything because I had no diagnosis (they didn't see the break on the x-ray, saw it years later on an mri). As soon as I was diagnosed, I was awarded DLA, because they know what the condition is, and how it can affect people.
Yes, my needs might be greater than someone else's, which is why I get higher mobility, but having a diagnosis is what got me the award. Without it, they just don't care - you have no 'proof' that there's anything wrong.


Nicola

mandiskem

i have hypermobility syndrome i am 35 in june and suffered with this for 12 years i am now in wheelchair and got constantly dislocating joints, ankles,knees,hips, shoulders. i have had my home adapted with stairlift,wet room and ramp for the chair to go in and out of my house, i claim dla for it both care and mobility components, i have also got cataracts in both eyes just had my left eye done due to the fact of the hypermobility syndrome and musculoskeletal problems. the illness has taken over my life, cannot wash my own hair, cook ,wash,put my clothes on without a joint out of place.

Djonma

Mandi, sorry to hear how bad it has got for you.
I have an adapted home as well, a bungalow, that the council provide for me, as getting my electric wheelchair into a privately rented house was just impossible, and using a manual chair indoors... well you lose your rent deposit the minute you move anywhere because of the carpets!
I have a great ramp up to my front door, shared with my neighbour who's also a wheelchair user, I don't have a wet room, I have a bath with a shower over it, but I have a shower seat from the social services OT's. It sits on the bath, and lets me sit on there, so I can still shower if I can't get in and out of the bath. Quite often now, to have a bath I need my boyfriend to be here to help me out anyway, and at the moment, in case I have a seizure.

The constantly dislocating joints is a nightmare. It hurts SO much!
If I pull the fridge door open without being really careful, I can dislocate my elbow, wrist, fingers, even my shoulder!
Even being careful, any of them can go anyway!

It does take over your life, and it's quite scary how every minute of every hour of every single day, all the time, you are constantly having to watch out for things that could cause injuries and pain.
I can't wheel my manual much because it dislocates my thumbs really badly, and my wrists are quite bad with it, and my shoulders and elbows get quite sore.

There's pretty much nothing I can do anymore that doens't involve a dislocation.
Just sitting there watching tv (well, a dvd, as I don't have proper tv - don't want to pay for a license, so don't use it - saves money, saves me sitting there turning into a vegetable!), a joint can just collapse for no reason.

Sometimes it's really overwhelming how badly this condition can affect us.
There is nothing I can do without having to be careful, and thinking about how it'll hurt, and if you do get a dislocation, you have to maneuver the joint back into place, and sometimes it's a bad one and it won't go back into place, and just trying to put it back into place can actually cause more damage!
You have to have the medical knowledge equivalent to a physio, JUST to survive daily life.

The physio who sat down and taught me all the joint positions for normal people, the normal ones for me, and the out of place ones, and how to put each and every joint back into place, said after that year of training, that I should become a physio, as I knew so much just to live!

And the constant pain is just horrible. Yeah if I dislocate my shoulder, it doesn't hurt as much as a normal person dislocating their shoulder, because my ligaments are stretchier. BUT... it still hurts!
And it still causes damage, and inflammation, and I can't have anti-inflammatories anymore because I had so many as a child / teenager, they gave me stomach ulcers!

It's so dangerous just trying to live each day normally. Try and do anything special on top of that, and you can be in for serious injury.

I find that an Ehlers-Danlos commnity I'm on helps a lot - to be able to chat to other people who really do understand what you're going through, and have the occasional rant when you've just had enough of it, can really help. Also, we share information and knowledge, so it helps us grow in our knowledge of this condition, and how to manage it.
I don't think there's enough out there for us - I personally think there should be some kind of mini course on how to manage this kind of condition. I know there are expert patient courses available, but the constant dislocations are very difficult for people to deal with, and I think there should be some official system that helps to teach people with hypermobility, what to do in case of a dislocation, how to treat it, and when you need to see a doctor.
I've gone months before without seeing a doctor for an injury because well, it's just a dislocation, but then it's still been bad and I've had to get it checked, and they tell you off for not going earlier.
But sometimes, I've gone in the next day, because it hurts so much, and then the day after that it's just totally eased off and it's like wasting their time.
How am I supposed to know when to go though?
No one's told me that kind of thing!

There are so many aspects of how this condition controls our lives, that we do need more help to manage it I think.

Nicola

mandiskem

the time to go is when u cant put your joint back into place . i had to go to hospital once cos my hubby was putting my top on and my shoulder come out and it couldnt be relocated back to normal which then i had to go and get it put back in took 4 men and 8 hours later and it went back in after alot of tugging with a bed sheet under my arm. the time to go is when ur joint is out and u cant move it and stand the pain anymore. if i pick up a magazine and passed it u my shoulder will be out of place . i get pins and needles goin down to my fingers when i really put it right out of joint so i know when to go. the dislocation of a joint depends what joint it is. if it is a shoulder it is easy to put back into place .