New diagnosed PM

I am a 62yr old retired nurse. My CK is 681 and GP is about to refer me to a Rheumatologist. I have a two month history of extreme pain in hips, buttocks, upper and lower leg muscles. Have not been able to exercise much at all. I had an MRI today to rule out any lumbar, sacral issues too. I have read that exercise is good (obviously not too strenuous), but not good when in pain. I am concerned I may have to wait several weeks to see a Consultant and things may be deteriorating further by not doing any form of exercise. I have limited knowledge around polymyositis, but will learn, learn and learn. Just feel quite low looking at all the other problems associated with it.

[MEW53]

Welcome Cuckoo0925,

This is a very helpful forum.

I’m a similar age to you and was diagnosed with polymyositis with a Scleroderma overlap in 2014. It came on very quickly in the same way you have described. I went to my Gp in the July and was referred to a rheumatologist, however I was getting so weak I went for a private consultation as the wait was months and saw the same man.

I was admitted into hospital in the August and had many many tests for 8 weeks, the disease was progressing for me quite quickly.

It is different for everyone though.

My advice is try and get help sooner rather than later, I paid for one private session, best thing I did and I see the same rheumatologist consultant every 6 months on the NHS and other NHS experts, I’m on a cocktail of drugs but these drugs have helped me enormously and have monthly blood tests.

Take it easy on the exercise, just don’t overdo it, just gentle exercise and you may find you get very tired so rest. As an ex-nurse you’ll have a better understanding of how to pace yourself.

Good luck and hope you feel better soon and get some answers soon.😀

[Hidden in reply to MEW53]

Hello MEW53 and thanks for your helpful reply. I have been considering paying for the first Rheumatology appt, as it does worry me about things progressing waiting to to be seen. Glad to hear drugs are helping you feel better. 🤞🙂

[MEW53 in reply to Hidden]

Sounds like a good idea, it helped me get a diagnosis much earlier and stopped some of the progression. It was money well spent.

[Jo-Goode Administrator]

Hi Cuckoo0925,

Sorry for my delay in replying, I've been in hospital receiving treatment.

For the moment exercise is not advised, if you do get a diagnosis of Myositis you can start physio and exercise after you have commenced treatment and your condition stabilised.

There is a list of Myositis specialists on the pinned post (right hand side) or I can advise of the nearest to you, happy for you to PM this if you don't want it on an open forum.

Regards,

Jo

[Hidden in reply to Jo-Goode]

Thank you Jo. Hope you’re feeling better?

[Jo-Goode Administrator in reply to Hidden]

Thank you, it was for my regular 8 weekly treatment of immunoglobulin that I have at Kings College; usually takes a week or two before I see improvement.

[Hidden]

Gentle exercises at home can commence as early as 1 day after diagnosis according to Dr Helene Alexanderson from her study at the Stockholm Institute into Exercise in Myositis. She recommends exercise is good at all levels of this disease to suit your capabilities. Then a more tailored exercise program under the supervision of a physio from week 4.

[Hidden]

Thanks for your reply Helen-M. I am seeing a Consultant Rheumatologist tomorrow. I am self funding this first appt and thankfully have only waited a week to be seen. I will be taking my notepad and paper haha.