The Arthritis NewsletterSpring 2012
Polymyositis almost killed me but now I’m in remission!Written by: Joyce Ma
It was Spring 1981 when I started feeling exhausted. I ignored the symptoms, thinking that I was just busy taking care of two young children and labouring to get the garden ready for planting. But this was no ordinary exhaustion; the weakness progressed rapidly to the point where I couldn’t raise my arm above my head, and I was having a hard time getting up from a chair. Mid-June, I decided to see my family doctor; blood tests and an X-ray came back negative. Although he assured me that nothing was wrong, I asked my doctor to refer me to a specialist. He suggested Dr. Andrew Chalmers, a rheumatologist.
I went directly to Dr. Chalmers office from my doctor’s office to make an appointment. I thought if I spoke to the administrator directly I could get an earlier appointment. It just so happened that Dr. Chalmers was about to go for lunch and he overheard me explaining my condition to the nurse. He asked to see me immediately. After examining me and assessing my symptoms, he sent me to Vancouver General Hospital. He personally checked me into Emergency to perform various tests. The tests confirmed I had Polymyositis.
Polymyositis is a very rare form of Arthritis. It is an inflammatory disease that leads to muscle weakness and damage. Polymyositis affects many muscles, especially around the shoulders, hips and thighs; in my case, it affected my neck, lungs and heart muscles as well. Physical assessment determined that my neck and heart muscles were very weak and my lungs were barely functioning. My breathing was shallow and my voice was faint. My condition was so serious that I was referred to as “a walking corpse”.
Dr. Chalmers put me on a very high dose of prednisone and Methotrexate. Because Polymyositis is a rare form of arthritis, there was little research available at the time (this was 30 years ago). From what little research there was available to patients, I found that patients actually died from the complications of this disease. During my treatment, I gained 60 pounds. However, I was extremely weak. I could not exercise because it would cause more muscle deterioration and I lost hair as a side effect of the medication. I was home bound for an entire year. As you can imagine, I developed low self-esteem and a deep depression over that period.
Two years later, the disease was finally under control, medication dosages were lowered, and it was time to re-build my muscle strength. It took a long time to “beat” Polymyositis and I have had some set-backs and flares over the years. The flares were sometimes brought on by working too hard or cutting down on my medication too quickly (not following my doctor’s recommendations). Getting motivated to continue the exercises at home was a challenge until I started going to the gym. I went to the gym two hours per day, three times a week for twelve years, and with the help of my “team”, I’m finally off medication and I’ve been in remission since 2005. Life is good. I am particularly grateful to Dr. Chalmers. I honestly believe that if he had not been so generous with his time that fateful day thirty years ago, I may not have been here today to tell this story.