Boomerang

Thank you so much!!!

I saw the rheumatologist today and he is certain I have EDS. I see a geneticist next to find out which type.

Okay. Thanks for the information everyone and the warm welcomes. I see my rheumatologist tomorrow and will mention EDS and neuropathy. This pain really stinks.

I'm sorry you're in pain. I hope they can find a solution.

I think they've ruled out any rheumatological issues because all my bloodwork comes back negative. I think neurological reasons have been ruled out except maybe neuropathy or something wrong with my spine. No one other than physical therapists have seen the hypermobility. So I guess EDS is a possibility. There isn't much left that I know of. But the pain doesn't seem to be like fibro. A lot of it is localized in my hips which are hypermobile.

Does this pain usually cause difficulty walking or can it?

Thanks for your response.

Thank you. I don't want EDS but it would be nice to have an explanation for this pain after all these years and get into pain management. Nothing I can do touches the pain.

How much pain does POTS cause? I have been in a lot of pain for years. This week has been especially bad. My doctor just seems to shrug the pain aspect of it aside. My joints and muscles just kill. I'm mildly hyperflexible so I wonder about EDS but I don't think I'm flexible enough. I have a referral to a rheumatologist but my experience with Rheums has been very poor. I was told I had atypical fibromyalgia and to ignore it. How can fibro be atypical when it is a diagnosis of exclusion?

Does anyone else get muscle pain? I don't see it listed.