My regular Rhematologist was away at my last visit so I saw somebody different. I was shocked when she disagreed strongly with me taking my pain killers, told me my muscle and joint pain was nothing to do with my illness and that I was just stressed and needed a massage or good chiropractor. Needless to say I won't be seeing her again. Can anyone recommend some good literature that I can give her and recommend that she reads?

Hi Kat. Gee, gotta love doctor's like that. Do you have reumatoid arthritis with your antisynthetase? Let me know and I will be glad to look up some really good information for you. I certainly have plenty of time on my hands these days...lol I want to make sure I get the best articles that pertain to you. Wayne

Hi Wayne No I don't have rheumatoid arthritis. Because I've suffered late miscarriage and sometimes my platelets disappear they think I may also have SLE. Before my diagnosis I had acute spells when my hip and back pain where so bad I couln't stand. I haven't been that bad since I've been on the immunosuppressants although it's more chronic pain worse when I sit or lie down. Anything you can find would be great. Katrina x

Hi Kat. I am on it. Give a couple days, and I will have your info. Wayne

http://www.medicinenet.com/polymyositis/article.htm http://health.nytimes.com/health/guides/disease/polymyositis-adult/overview.html http://www.orpha.net/data/patho/Pro/en/Antisynthetase-FRenPro8611.pdf Hi Kat. Here are 3 articles about antisynthetase syndrome. and the associated myositis issues. As noted in them, Pain is not the most common symptom, however it does show in approximately 25% of patients. The biggest thing about this disease is that there is no "normal". I will continue to do some more research for articles, however this is not alot. There are plenty of people with this disease who talk about their pain, but I doubt that a doctor like the one you described is going to believe them. I am very lucky to have a Neurologist who has done some study on this disease as my lead. He is quite knowlegible considering how little is actually known. I am kept very informed about everything we do seem to know at this point. I will send you more when I get it. Take care and God Bless. Wayne

Thankyou Wayne sorry it's taken a while to reply been really busy. I'll check out the articles. Does your neurologist have any ideas on how the illness effects the nervous systems I've developed a tremor in my right leg when I sit or lie flat. It might just be arthritis. Thanks again Katrina x

Hi Kat. I also have tremors in my legs. For me it is due to the polymyositis, and the fact that my muscles have some atrophying happening because of it. For me, taking all the weight off my legs (gotta love my lazy-boy sofa) seems to help. I hope that it does not continue to get worse for you. We sure have enough to deal with already...lol I will mention it to my neuroligist next time I see him, which should be in the next week or 2. Take care for now, and God Bless. Wayne

hi kat, the very best article i've found on our condition is a very thorough and informative study done in oslo, norway(google it). they report that 20% of us have tendenitis. seems we all have some variations. for me this is paramount. my pain is around all my joints. not in them. my inflammation is most easily seen in my hands where there are many tendons and ligaments. i know my connective tissue is inflamed, whether the blooming rhuemy does or not. imuran and cellcept have been as good as placebos. nsaids do nothing. 10-15 mg of pred works. more would be better but the side effects. so i hope this helps. as others have mentioned diet may make you feel better. loads of fresh veggies, lean meat, low fat, etc. take care, good luck.

This summer I lost the ability to flex my fingers, control my fine motor skills and hold much of anything in both my hands at the same time. And the sides of my fingers, my wrists and elbows ached something awful. Despite an elevated CK, the rheum doc told me this could not be myositis because it was in my hands and myositis did NOT have pain. I asked why would it NOT be painful to have muscle damage (as evidenced by the ck results) going on? Up until this point my AS has only been severe lung involvement. After bloodwork to rule out various other illnesses and a very painful but inconclusive EMG, they finally did an MRI of my forearms, wrist and hands - which lit up like a Christmas tree showing all kinds of muscle edema and inflammation. Then they believed me! They also used the MRI to guide a muscle biopsy from the delicate muscles associated with these tendons. The results showed dermatomyositis. Higher doses of prednisone has dropped the inflammation, ck numbers and pain levels. The muscles are slowly regaining strength but I do have to be careful with how much I use my hands. I also wear wrist splints at night and also when carrying anything. Later they told me "they learned a lot from my case." So did I and I now have a new rheumatologist on my case!