I can't exercise because of severe pain. My doctor has narrowed me down to connective tissue disease (autoimmune) and polymyositis. I've been diagnosed with fibromyalgia and Hashimoto's thyroid. Synthroid plus Cytomel has helped more than anything in giving me enough energy to get out of bed. I also take Humira, which seems to help. I was untreated and misdiagnosed for maybe six years because of Veteran's Admin so-called care. They said there was nothing to be done except physical therapy and that always destroyed me physically. I tried many times. I did pre-yoga, which is gentler than regular yoga, and felt like I'd been run over by a truck the next day. All physical therapists have recommended discontinuing therapy because of my increase pain and weakness. I would love to find a way to exercise and not hurt myself, but I've had such bad experiences that I don't even try anymore. In fact, my spouse practically forbids it. Even swimming is painful, although a hot tub and floating in the ocean help temporarily. Published: April 13 ::

The medicine that always works for my polymyositis, no matter what, is prednisone. Cyclosporine worked well for a while. I am taking methotrexate now -- we will see how well that works. Imuran was the least effective for me. Published: October 13 ::

I have been searching for a condition that would explain my symptoms for over a year. I've seen neurologists, infectious disease doctors, had scans and labs. Since March I've developed cardiac arrhythmias, tachycardia. I started falling and had leg trembling and weakness along with severe pain from hips down to knees. I lost my ability to walk and was hospitalized for 3 days until it slowing came back, maybe due to high dose prednisone. I developed nodules under the skin. Several of them have abscessed requiring an 8 day hospitalization. I have a herniated a disk from my continual falling. Does anyone here have all those symptoms? Due to insurance problems I haven't had a muscle biopsy or EMG but my CPK has been slightly elevated at times but just to 600 or less. Any input would be appreciated. Published: July 06 ::

35 years ago I was diagnosed with Arthritis which has been treated with high levels of Aspirin, later followed by new and improved anti-inflammatory. In combination with the arthritis my cholesterol balance has not been acceptable even though it never reached a 200 level. I have been diabetic for 30 years. The real problems started when I was put on statins. When I got to the point that I had to lift my leg with my arm and pull to get into a car, and was not able to get out of a chair without arms on it I went to the doctor for help. He did the clinical pokes and jabs, said I was strong and sent me home. My CK tests were high and he said that was no doubt caused by the Lipitor. It was not until the blood tests were very high showing not only muscle damage but also heart muscle involvement that I was sent to a rheumatologist who reran the CK tests, did the milligram followed by the biopsy. There was no doubt of the diagnoses. The problem was the years it took to get someone who was willing to listen. I had stopped the Lipitor several years before. That drug should be removed from the market! I am being treated with sodium Methyltrexate and high doses of Prednisone. I have been tittered with the Prednisone, now 10 and an increase of 6 pills of Methyltrexate. I battle the fatigue, and visual changes. The head ache usually lasts for 48 yours after the Methyltrexate. I hope for a remission. Published: July 06 ::

I am 43 now but have had poliomyelitis for 11 years now. Yeah, it was hard to accept it and deal with it. Even though I work for SSA dealing with mostly disabled customers I am related to them in all the pain and ways. I hated prednisone, inmuran and methatroxate but I had to take it. I have gain couple of pounds, swimming is good, and adjusting my daily activities helps me a lot. The last thing I had was called motion sickness which I could not stay still everything around me was moving so weird. It usually happens in April. This is the second time this year, could be pollen who knows. I remember got a bad cold in Seattle, WA which lasted for days and each side of my body stopped moving eventually all my body stopped working. I have problems with my voice and speech, this is really bad because I push to talk with people and they still can hear me or understand what I say. I lack breath due to Interstitial Lung disease. Depression, yes, we all go through this. People might think we are lazy (resting too much) or crazy (prednisone). But keeping our mind busy is the clue for living not forgetting love and laugh. Published: July 06 ::

I was diagnosed with dematomyositis/polymyositis last year. I was put on high doses of prednisone, but that was not controlling the rash/pain or fatigue. It took six months of being on Methotrexate (20 mg weekly) as well as prednisone (10 mg) daily to make me feel better. We are now decreasing the prednisone slowly -- ½ mg per month. I never thought I would feel good again. Published: June 22 ::