Hindsight is 20/20. Looking back, I can see that I had been sick for a while before I finally admitted there was something wrong and there were several little things that occurred that should have convinced me to go to a doctor…
When I look back, it started around June. I was having a hard time sleeping- mostly because my body was always aching. I didn’t think much of it, as I’d always had sleeping troubles. I figured it had something to do with all the stress from senior project and graduation and that it would go away. After graduation, I was still tired and sore, but passed it off as being due to moving into a new place. My energy level sucked and I never woke up feeling like I’d had a good sleep. I kept thinking it would go away. My summer was spent job hunting and decorating my new condo. To me it seemed pretty stress-free, but yet I was still not sleeping. I got a YMCA membership for my birthday, and thought that water aerobics and lap swimming would help.
I started a fantastic new job in the middle of September. During training, I remember remarking that it seemed like my head was too heavy for my body. This made my friends laugh, but I found myself having to put my head on my desk during breaks as my neck was always hurting. As October and November went on, my neck and shoulders started hurting more and more and I started having difficulty washing my hair or putting it up as well as going up and down stairs. By the middle of November, I wasn’t really eating as my jaw hurt and I was staying in bed until I had to get up and go to work as I had no energy to do anything else. During this period of time, I dropped 18 lbs in less than two weeks. I now know this was due to the disease, and it was muscle mass.
November 20th, I went out to have supper at my parent’s house. My pants were hanging off me and I looked like I hadn’t slept in a long time. When my mom asked what was wrong, I burst into tears and couldn’t stop crying. I didn’t know what was wrong, but at that point I knew there was something wrong. I spent the night, and the next day left for work after promising to make a doctors appointment. At some point during my shift, I decided that I would go back to my parents place for the night. I arrived back there around 2am, and couldn’t get up the two stairs to the house from the garage. I ended up on the floor in the entryway crying at 2am. My body was so tired and weak that I couldn’t get up and ended up crawling down the hall to the family room where I decided I’d spend the night on the couch. My mom came down at 3:30 am as she didn’t know where I was. I didn’t tell her that I didn’t think I had the strength to go up the stairs, but rather that I had decided to watch TV after work. The next day, the thought of going to work gave me a panic attack and I called in sick for the first time. November 21st ended up being my last day of work for a while.
A friend suggested that maybe I was depressed as I had all the physical symptoms, and the lack of sleep made me a little emotionally unstable and I cried sometimes for no reason. We made a plan to call the doctor first thing Monday morning.
This was the start of a scary and lengthy span of doctors visits and tests…
Anon said
dude, why would people think your depressed? stupid doc. If you have an autoimmune disease, then you are bound to be tired and have a lack of energy.
If you haven’t yet, get a muscle biopsy and get your ana checked! STAT. The ana will tell you the exact type of autoimmune disease you have and the rheumy can then treat you accordingly.
Caitlyn said
I had a muscle biopsy, it was inconclusive and sent off to a pathologist in another city. I did have a positive ANA test.
I’ll be going to another city to see another specialist who deals with more myopathies.
This morning when I saw my rheumatologist, he let me know that the pathologists studying the muscle biopsy in the other city are still thinking Polymositis, but they are also investigating the possibility of other metabolic disorders as the muscle tissue shows signs of beta oxydation which is indicative of a lipid storage or enzyme disease.
And as far as my doctor thinking I’m depressed, well… When he went through the list of symptoms, it fit. I had even contacted a psychologist with my company EAP and she had given me a clinical diagnosis. My family doc confessed to me when he visited me in the hospital that while he had heard of Polymyositis when he was in med school, he wouldn’t have thought an otherwise healthy 23 year old would be a candidate for it. Unfortunately with the lack of family doctors in this area, I was unable to find another general practitioner to give me a second opinion, so I went with it. For a brief period of time, it seemed like I was getting better….