Hypermobility syndrome

cabsy83

Hi

I have finally got a diagnosis of HMS after 7 years of complaining of being in pain! I have seen my rheumatologist, a physio today, and have an upcoming appointment with occupational health...oh and I am awaiting my new insoles from orthotics. The pain is slowly getting worse but at least now that its being taken seriously I am being given decent painkillers instead of getting palmed off with ibuprofen!

I was just wondered if there are any other HMS sufferers here who could shed some more light on the condition for me and let me know if there's any help available out there? I've looked at the DLA stuff and I feel like I do need help but as a single mother of two I have no way of not walking despite it being in excruitiating agony! I also struggle to keep up with housework etc at home as I suffer badly with fatigue.

To top it off I'm also being referred to a neuropsychologist for memory problems possibly related to my epilepsy! Joy of joys!

Solstice_Twilight

I have hypermobile Ehlers-Danlos syndrome which falls into the same family as HMS
Have you had a look at the HMSA forums? I found a wealth of information there when I was first diagnosed. If you're finding daily activities are a struggle, then do apply for DLA - the worst they can do is turn you down at the end of the day. There's loads of info on the HMSA about applying for DLA and any other help that may be available to you (I'm on the direct payment scheme as well for a carer for a few hours a week to help out at home and help me with social activities, to take some of the burden off my OH).
Big (((hugs))) - at least now you can put a name to what's wrong with you! I remember the overwhelming relief I had when I was finally diagnosed at 20, after suffering with chronic pain since I was eight and being told it's just "growing pains".

darkrev

I'm another sufferer. I also have restless legs syndrome as a result of it. I've found my neurologist very helpful along with orthotics. When there have been a few interventions it usually calms down a bit, it just takes time.hang in there x

rogerblack

cabsy83 wrote: »

I've looked at the DLA stuff and I feel like I do need help but as a single mother of two I have no way of not walking despite it being in excruitiating agony!

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.

welshgirl_michelle

im 26 and also suffer with BJHS and i was diagnosed about 4 years ago (problems started 2 years previous to being diagnosed) the condition causes my joints to dislocate (my thumb has popped out a few times but my major problems are my kneecaps they both dislocate on a regular basis and cause major pain etc)

i live in south wales and i discovered an inpatient rehab unit at stanmore hospital in london (far to travel but worth it) ive been there twice (once i was there for a week and the other time i was there for 2 weeks)

i know BJHS affects everyone differently and some people dont even suffer from having it!! what exacly are your symptoms?

Racheldevon

Hi, I too have the same condition EDS 3 /HMS. The hypermobility forum has a wealth of relevant information. I will send you a PM with some further info in it & key contacts. This book is also very good http://www.amazon.co.uk/Hypermobility-Syndrome-Diagnosis-Management-Physiotherapists/dp/0750653906/ref=sr_1_5?s=books&ie=UTF8&qid=1314991723&sr=1-5 and has been very well used by a range of specialists i'm seen and by myself for reading up around the conditon.

formaldehyde_perfume

*waves* another sufferer here. I'm exhausted so I'll pop back another time and be more productive.

Trialia

What Solstice_Twilight said.

I have hypermobility-type Ehlers-Danlos syndrome, too - quite severely, I have a whole medical team treating me and I'm on morphine. I'm also in receipt of lowest-rate care and higher-rate mobility DLA, because I can't do anything without severe pain.

The experts on HMS and EDS are starting to agree that HMS and hypermobility-type EDS are pretty much the same condition, just with differing degrees of severity (HMS is less severe than HEDS).

The Hypermobility Syndrome Association and the Ehlers-Danlos National Support Group websites are the best places to look, and you can get a very good book on EDS from the EDSG for only a fiver.

cally6008

Another sufferer here as well

Katyboo

Fellow sufferer who has PPMS too.

Hope all are not in too much pain today? or at least too doped up on painkillers to notice....:s

splodger_seedswapper

i have severe hms too