Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Hi my name is sonia. I have finally be seen by a rheumatologist who is reporting suspected polymyositis. He has referred me to a neurologist but i do not have appt till mar.20. I am on the cancellation list.
7 months ago I noticed weight loss followed by difficulty walking and a lot of pain in left hip sometimes causing sciatic nerve pain in left leg. Thanksgiving - found i was unable to lift or carry anything even something very lightweight. Hips seem to pus forward and shoulders droop down. I currently weigh 106/107 lbs. Sometimes the pain is so unbearable I just sit and cry.
I am a natural health nut and have always exercised, yoga, lifting weights, take supplements. M family docor did not take my aches and pains very seriously at first, although she was very disturbed by the weight loss and lectured me on eating more. I eat well and I eat healthy.
I do not know quite what to expect for my future life. It sounds as though noting is going to be quite the same. I so miss my mobility. I am currently trying to use a walking stick. The rheumatologist tells me i will probably go on steroids but I have to see the neurologist first. So here I am, playing a waiting game which is very frustrating.
This group seems to be very caring and knowledgeable. I have already learned so much from reading your posts. I obviously have a lot more to learn. This is all so new to me. I guess the neurologist is the one who will do the muscle test, then perhaps i will know for sure.
Very anxious and a little scared of the unexpected at this point.
7 months ago I noticed weight loss followed by difficulty walking and a lot of pain in left hip sometimes causing sciatic nerve pain in left leg. Thanksgiving - found i was unable to lift or carry anything even something very lightweight. Hips seem to pus forward and shoulders droop down. I currently weigh 106/107 lbs. Sometimes the pain is so unbearable I just sit and cry.
I am a natural health nut and have always exercised, yoga, lifting weights, take supplements. M family docor did not take my aches and pains very seriously at first, although she was very disturbed by the weight loss and lectured me on eating more. I eat well and I eat healthy.
I do not know quite what to expect for my future life. It sounds as though noting is going to be quite the same. I so miss my mobility. I am currently trying to use a walking stick. The rheumatologist tells me i will probably go on steroids but I have to see the neurologist first. So here I am, playing a waiting game which is very frustrating.
This group seems to be very caring and knowledgeable. I have already learned so much from reading your posts. I obviously have a lot more to learn. This is all so new to me. I guess the neurologist is the one who will do the muscle test, then perhaps i will know for sure.
Very anxious and a little scared of the unexpected at this point.
For me, I was on prednisone 3 years, then transferred to hydrocortisone for a few months, but now I am completely off prescription meds. I do strictly follow a gluten-free diet (sometimes grain-free and/or vegan). Also, I take lots of supplements, including a natural anti-inflammatory. Many of us here can relate to your anxiety and frustration, as we have "been there, done that, and don't want to do it again." Best wishes to you. Keep us informed of your progress.
I am also someone who eats healthy and exercises. Myositis strikes the health food nuts too. I woke up on Dec 27th, 2010 and was unable to lift my arms or get out of bed. This disease is a surprise. There are hereditary links to our condition. My dad had diabetes type 1 and my mother has celiac disease. Autoimmune disease does run in families.
Your doctor does have your blood tests and knows your CPK score. The doctor will run tests for autoantibodies too. Your neurologist will run an EMG muscle test on your arms & legs. You will be scheduled for a muscle biopsy. Good Luck and keep us posted.
Nanny i have just started on a gluten free and (anti-inflammatory) diet which is very close to vegan. again, such a learning experience. i have doubled up on my fish and krill oils and take turmeric along with all sorts of other good supplements.
Autumm, i live in canada and do not think that my rheumy will be as knowledgeable as the ones in the US as they do not seem to experience this disease as much. However, he seems as though he is going thru all the right motions, judging from what i am reading here.
trypt1. this was the the first i read of autoantibodies. is this another blood test like the ck.?
Not sure if i am supposed to respond under my initial heading or whether to start a nother topic when i need to ask questions.... please advise.
i will stay in touch as i learn more, but i now have to wait fill mar.20. again thank you for the warm welcome. i will continue reading and learning.
It is a steep learning curve but you can manage it.
Shawna
I know it's frustrating not knowing exactly what's going on and not having a name for it (yet). I'm going thru the same thing right now.
They also told me that I needed to eat more - yet I'm eating 150% more than what I should have to eat based on my height, weight, activity level. I've lost 30 lbs and am down to 88 lbs.
I also have lots of pain in my hips and I have pain/soreness in the muscles where my legs meet my abdomen.
I'm trying to get my primary care doctor to fax a referral for me to a neuromuscular ctr/clinic at a University. I have a diagnosis from the same University for Celiac's Disease. Although, after going gluten free, the Mayo Clinic did another biopsy & said I didn't have Celiac's (however it may have healed since I was gluten free). I try to eat really healthy. I used to do P90X six days a week for my workout. Now I can barely walk 20 min without my legs/hips burning and walking a lot slower.
I hope that the neuro can help you find out the correct answers. Good luck with everything.
-Kelly