I can think of nothing more sad than to have a child diagnosed with this disease, which we all know is difficult enough when you are an adult! I never wanted to have children, and now that I know fibromyalgia is hereditary I am glad that I didn't. It would have been too hard to deal with the guilt I would have felt about it! But what's weird is no one else in my family has it - and I have 3 sisters and a brother. No mom, grandparents, aunts, I am the only one in my family!
I got it fairly young, at age 31, after the extreme emotional stress of a difficult divorce. In October I went surfing (for the last time!), got a sinus infection that wouldn't go away, which then developed into strep throat, and a month later I still felt like I was much more tired than a young woman should be. I went out dancing with friends on New Year's Eve, and the next day I could not stand up. I had swollen bruised looking lumps along my lower legs and ankles, and I couldn't put any weight on them at all, so I was suddenly bedridden. Whatever this was traveled into my knee and my hip, and I had to be carried out of my apartment to the rheumatologist. I had something called erethyma nodosum, and had to stay in bed for months. Then I got painful muscle spasms throughout my body, and I could barely use my hands and arms. I had every test in the book, and finally my doctor told me I had fibrositis, and put me in the hospital for 2 weeks. This was in 1987, so they didn't call it fibromyalgia yet.
I had to quit my job, move out of my apartment at the beach, and put everything I owned into storage. Just over a years after getting dicorced, i had to move back home with my mother and 16-year-old brother!
I hadn't lived at home for ten years. I had been married, and begun a successful career. It was just about the most horrible thing anyone could imagine happening to them! For a year I was too sick to do almost anything. By the second year, i was able to work four hours a day. With the help of a TENS unit, and a new antidepressant, after 2 years I was finally able to work full time again and leave home. I believe that I was able to recover because I was still young enough, thank goodness. Also, the prospect at having to live at home with my mother the rest of my life as some kind of invalid was VERY motivating to me. Within another year, i moved 500 miles away to Washington, DC so I could rebuild my career and my life.
I was able to work for ten years, although it was very difficult at times. I did not tell anyone about my disability. I had to be very careful, and did not have a lot of energy to do things outside of work. I was still able to date, and enjoy life, and exercise (gently). My mind was very focused and my pain level was low. So you can go into remission for quite a while, which is what my doctor told me.
After ten years, unfortunately, I developed other serious problems from endometriosis, which resulted in four surgeries and chronic pelvic pain, and I got very sick again and finally had to quit my job. but working those ten years was the best time of my life, and because of it I had the satisfaction of knowing I had done something to contribute to society, and thank goodness now have disability covergae and a retirement fund.
So don't ever let anyone tell you you can't be successful and have a life even if you have fibromyalgia. I now realize the endometriosis started in high school, because I had terrible pain with my periods. It weakened my body over time, and I believe it was the cause of my fibromyalgia. Recent research has shown that 30% of women with endometriosis (which is fairly common and also a cause of infertility) will get fibromyalgia! It put stress on my immune system, which as we know, many people with immune disorders like lupus and RA also get fibromyalgia. Lyme also activates the immune system. I think it's why the symptoms are so similar - different causes, but same effects.
I am thankful every day that I don't have lupus, RA, or MS. Fibromyalgia is tough, but otherwise my body is pretty healthy. It's taken me years to get over the second illness and surgeries, but my pelvic pain is finally gone now too. You just have to believe that you can get beyond whatever hell it is you have to go through! I've really had a great life, and I never gave up no matter what happened to me. I wish I could still work, because I loved my job, but I have to make new goals for myself.
I have recently decided that I want to seriously pursue making jewelry, which is a hobby I have had for many years. It just occurred to me one day, that it would really make me happy if I could make all of my ideas into something beautiful, that I could share with the world. I am excited and I feel more motivated than I have in a long time. I have had great fun buying a bunch of beautiful beads and imagining what I could do with them. Am I starting a business? I don't really know! It's more like I am thinking "build it, and they will come!"
You have to have dreams in life!