My daughter is a very loving and caring 11 year old but feels so alone because of her fibromyalsia. She is always hurting, and I feel so powerless in helping her to not hurt. I home school her because it is the only way she can do it, but she still has some really bad days. Things have been so hard on both of us from the beginning, she was born three weeks premature and also had three brain bleeds on three levels of her brain. When she was only 21 hours old she had a seizure while in my arms; which really terrified me that I was going to lose her. Because she was normal or perfect like her dad wanted he walked out on us when my daughter was only three weeks old. It wasn't until she was 8 yrs old that she was finally diagnosed with fibromyalsia. Her dad has it and the doctors wouldn't or couldn't believe that it was genetic, but with watching her dad with this I knew what to look for and how it did with the body. Even though I was 100% sure that she suffered from it they still woudn't believe me for so many years.
It kills me everyday to watch her in so much pain and not be able to run around like her few friends that she has. And she is always asking me if she is the only kid who suffers like she does. Nothing we have tried helps with her pain.
I know that there are other people in the world who do suffer from this and I am not looking for sympathy for my daughter, I am just looking for people I can talk to who go through the same that we do.
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