Hypermobility syndrome

cally6008

Katyboo wrote: »

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

Body pain over-ruled by migraine at the moment, migraleve has done sweet f a so think its time to hit ibuprofen+paracetmol

Katyboo

Sorry to hear Cally6008..........

I dont get much relief from paracetmol, ibruprofen, pregablin, Amitriptyline, codine, co-drydamol or co-codamol.

Have wondered if its time to try good ole mallet to the head now.....

MILLYMOLLY

Hi My son is 15 and was told he had hypermobility last year but it was just said in passing by the Dr. He has had joint problems for a few yeard now and been diagnosed with Osgood schlater (sp) in his knees and Sherman's disease in his back. He has had some physio but I didn't realise there was actually a support group and everything

cally6008

millymolly - where in northwest are you ? cumbria has excellent support group

MILLYMOLLY

Hi I'm in Manchester

Olokia

Katyboo wrote: »

I dont get much relief from paracetmol, ibruprofen, pregablin, Amitriptyline, codine, co-drydamol or co-codamol.

Only just found this thread. So sorry for bringing it back up.

I have Hypermobility Ehlers Danlos.

I don't get any relief from paracetamol or ibuprofen. I get some pain relief for the mild pains from 15mg Cocodamol but I have found Tramadol works for me, I just get a few side effects from it.

My main pain comes from my neck, when I have that then I can't do anything as it hurts too much to think. I only get that about once a month though for a few days. I don't consider myself bad enough to receive DLA as I can still walk and do most stuff without too much pain.

devon_guy

I have it too! Welcome

smolloy

Hiya fellow bendies
I too have been diagnosed with HMS this year (Physio spotted it), after YEARS of constant pain. I see the rheumy next week for what I hope will be a confirmation for my medical records, then I can try and get a team together. I'm lucky that I don't dislocate. my main symptoms are lower back pain (bulging disc) and SIJ pain which affects my mobility. And I have 3 slipped discs and OA in my neck. My knees have decided to join in the party, nerve pain in both arms and legs and I have a pretty much constant headache.
I'm in real danger of losing my job now as the HR officer at work seems to have it in for me and is trying her damnedest to find evidence that I'm not cabable of doing my job. I wont qualify for ESA (hubby earns too much... yeah right!) or DLA (not bad enough) I just don't know what to do or where to go from here. I plan a weekly menu and do the majority of my shopping at Aldi (my only social outing whoopie!)
Could use some more ideas how I could stay at home and save enough money so we don't suffer too much hardship.

sorry for the ramble

Sarah

Trialia

Olokia wrote: »

I don't consider myself bad enough to receive DLA as I can still walk and do most stuff without too much pain.

Olokia, if you have hypermobility EDS, I'm sorry to say that you will later on. It tends to get worse, even though it's not clinically classified as degenerative. I was at your stage when I was about 14 years old. Just over a decade later, I have secondary fibromyalgia, I'm on morphine and cannot move without dislocating. But an early diagnosis in your case may be helpful to slow your deterioration. Are you having physio? You should be, if you're not...

D&DD

Morning Bendy peeps
We're still trying to get to the bottom of what my son actually has,they are thinking Marfans/Loeys-Deitz but were told last week he now has to have heart surgery has anyone had complications which affect their organs due to the collagen issues?

Feel free to PM me if you don't want to discuss on an open forum many thanks.