Acute Disseminated Encephalomyelitis (ADEM) Support Group

Severe chronic severe pain in my right hip, both legs and spine

Hello everyone, I had posted my story earlier also in April 2016, my complaints were chronic severe pain in right hip, both legs, and spine as well. For past years I roamed to many doctors, did a lot of MRI’s also but everybody said there is no problem in ur body we cannot help you, since 2016 I m fighting with this pain and fortunately I have accepted it and now it is part of my life. My concern now is last year a doctor diagnosed me saying I have seronegative spondyloarthritis (ankylosing spondylitis) bcoz my MRI was clear all the time till now, did bone scan last year and a rheumatologist said may be its AS coz of symptoms having I.e. chronic sever pain, freezing of spine and legs if I stand or sit for long tym. Is it possible that an Autoimmune disease ADEM shared his cells with autoimmune disease AS? And now I have phobia of winters bcoz I the pain is such I cannot sleep in nights, keep crying everyday and fight for my life, everyday in winters it feels like quitting it by I don’t lose hope coz I m meant for winning(this is wat I say to myself and self motivating to live this life) dw guys i m stable and I can handle it. If it has come and it will never go so it’s better to make myself strong day by day.

I’m so sorry for your pain and challenges! I had mystery pain that couldn’t be isolated nor helped with medicine (not without severe side-effects anyway). My neurologist recommended I try acupuncture which I did. And it has helped significantly! It’s not a permanent fix - I have to be treated every 3-4 months in my ADEM-attacked area, but it does help significantly.

I don’t know about AS so I cannot speak to that.

I wish you the best.

Laura

Ishantrl,
My husband is a Chiropractic Physician and he treats Ankylosing Spondylitis. Maybe talking to a Chiropractor would be an option for you.

Lynn

Thank you for the advice, I’ll surely try it.

Thank you for ur advice, my condition is really at very mutual stage, bone changes not yet started.

My husband also performs Acupuncture and it also helps.
Lynn