Physiotherapy

[CotswoldOx]

I was diagnosed in October last year and treatment (cyclophosphamide) was going well. No symptoms. I have finished that course and am now on mycophenolate tablets. I have severe lower back pain and am getting no where trying to get a physio referral. Does anyone think that this may work or do i need a change of treatment?

I hope someone can give me some advise...

[JanLuna]

I’m on Mycophenolate and have polymyositis. Diagnosed 2021 and just had a severe second case. I’m not a doctor or anything but my case seems to be not going great. I’ve had two more steroid drips and two chemotherapy treatments. I’ve a physiotherapist coming to visit me on Friday, so can update you about that if you like. I’m also having a stairlift fitted and some outside handles to help with doors. I’m thinking that you need to get in touch with your local council or government representatives. It’s a minefield figuring out how to get support. There also should be a free carers advocacy centre near you. I hope that helps you a little.

[CotswoldOx in reply to JanLuna]

Thanks. Please do let me know how the physio goes. Fingers crossed for you.

[Jo-Goode Administrator]

Back pain is quite common with Myositis patients, there was a discussion on the UK facebook group a few days ago. I've had periods of time when my back has been very painful, but once I eventually improve my function increasing exercise it does improve. I still struggle standing for longer periods, but that's not uncommon for Myositis patients.

Finding a physio in the UK with experience in Myositis is difficult, as only a few in the country. Some physio's are willing to look up the research from Dr. Helene Alexanderson, who is the leading authority in exercise & Myositis; Myositis UK had her as a guest speaker at the patent conference. I had extensive physio & hydro therapy when first diagnosed in the 90's when I lost complete function; in more recent years a local physio worked with me for a period of time & between us worked on improving my overall function after surgury.

Here's some info about exercise myositis.org/about-myositis...

[CotswoldOx in reply to Jo-Goode]

Thanks for the info.