I'm 18, have hypermobile type ehlers danlos syndrome and got diagnosed 4 years ago, I've been on most painkillers and the only one to give any relief is morphine, I've been referred to the pain clinic at the best hospital in the area and my appointment is Thursday 15th September, I was just wondering what to expect or if there is anything I should take with me? Basically any advice or past experiences would be good to give me an idea of what to expect, thank you!
North east, teessside to be specific and it's at James cook, the hospitals round here all need so much more funding than they're getting but that's the best one, it has a hydro pool which I'm hoping to be referred for again as it was one of the only things to help
I would say that no hospitals really have enough funding.
James Cook is a good hospital and I hope that they can help you. I would definitely ask for physio and hydrotherapy referrals and talk to the pain clinic about your type of pain and the treatment options. Given you have EDS I know that trycyclic anti-depressants are commonly tried and you could try others such as gabapentin or pregabalin depending on your symptoms. Maybe try to post a few paras about your pain and symptoms and the treatments you've tried and I and everyone else will try to think of anything that you haven't tried that could help
I highly recommend acupuncture....going on my local pain clinic they dont offer many sessions, and it has an accumulative effects, and i apologise as i dont know what your condition is, but acupuncture does seem to be able to help a lot of things.
I have had trigger point injections....had a bad reaction (think my muscles spasm'd around the injection sites), but when that wore off i did feel some benefit.....
Good luck and ask for everything they can offer :)