Published on 12, July, 2020
Hi
i have some form of instability in my back that the doctors can't get to the bottom of, but the net result is back pain that painkillers don't deal with and it disturbs my sleep every single night. Having just read a couple of other posts and wondering for a while now about the possibility of some form of co-morbidity between autism and back issues, I thought I would just do a quick straw poll to find out how wide spread the issue is.
Thanks
Andrew
My GP sent me to see a rheumatologist and he diagnosed me with joint hypermobility symdrome which he explained was the same thing as EDS hypermobile type but rheumatology diagnosis joint hypermobility and geneticists diagnose EDS so my diagnosis is JHS (joint hypermobility) but that is the same as EDSH according to him.
Will you describe your condition to me please? Because of this thread I have been looking up about this online. But though quite a lot of it seems to fit the being bendy bit definitely does not. I have the pain, weak muscles, can't stand for long, lean on things, rounded shoulders easily tired etc this does fit with all three Dcd, adhd and asd but I don't think it would be EDSH . So I am curious what it's like for you. Thanks
Yep. I've got hypermobile fingers so I they move around really easily and they bend back a long way. I have quite stretchy skin too. Sometimes my joints sort of lock, or click partially out, but never dislocate and my joints don't really feel that bad. My brother's hips and fingers jump right out as he has it too. Then I've got a lot of pain all over much of the time especially in my back and neck. Some of this is apparently the stretchy tissues not managing to hold everything together so everything sort of slumps because all the tissues are lax. Then I've got generalised pain intermittently, this is caused by histamine problems caused by certain foods, due to 'mast cell' issues which is part of hypermobility. Then I also get really weak going up hills and up stairs and my legs really hurt. I have poor circulation cold hands, very puffy feet if too hot (reynaud's syndrome). This is caused by POTTS another condition caused by hypermobility. I get back ache, neck ache, tingling in arms and wrists like pins and needles, headaches, nausea. I get really really exhausted and lethargic on and off. I got a book about it but all the information I found helpful is on https://www.edhs.info/symptoms
I have asthma, allergies, gut problems, IBS, and things like this too.
I didn't think I had enough joints hypermobile either but clearly I did. They didn't do that test on me either time, just moved my fingers and knees about a bit and said wow these are hypermobile, 'do you know what that means?' (patronising voice tone)... I haven't tried melatonin but do feel a lot better if I get more sun, I sleep better and feel more relaxed. I do the GAPS diet and part of it is getting more sun.
Yes, I just looked at the standard tests and I fail to meet the criteria as I don't have enough mobile joints. Yet the joints I do have that are hyoermobike greatly exceed the normal range of motion. Typical medics, you can't be something unless it takes up enough of your body, completely disregarding how bad individual parts are.
As an aside, has anyone tried melatonin therapy, either through using a SAD light or spending lots of time outside or by using supplements?
Oh that's good I'm glad someone else can use the link too, it helped me. Your subluxations sound very horrible, I know my brother has extreme pain with his and the dislocations. I think the thing with the joint hypermobility syndrome is not all the joints are bendy but some are really unusually bendy and this is usually how they diagnose it, I've been diagnosed twice and they were always really sure because it's apparently really obvious to a rheumatologist.