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.
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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I just saw your post and see that it was about 6 months ago. How is it going? The advice you were given was really good. Fibromyalgia is dreadful to deal with as an adult. Multiply that a few times to get a feel for what your daughter is going through. Add to that the other factors and you have a situation that screams for help. A support group for her is critical, and being around people her age going through health problems. It would be nice to have a buddy with the same condition, but not necessary. It may benefit her to share that other young people have health problems that other youth and adults & doctors don’t acknowledge nor understand. I’ve met two young girls at support groups over the years and I wish I had their information to put you all together. I know both girls mothers could find no one else their daughters ages going through the same thing. This was many years ago and then doctors refused to acknowledge it. I’d like to believe things are better now. Some of the greatest help many of us received was in the support groups. And I don’t want to scare you but I feel the need to say this. Growing up is hard enough for young people, add her problems on top of that and she may isolate and feel hopeless. I would strongly suggest you find help in your area before she has suicidal thoughts. And you need help too because this can’t be easy for you to go through and watch her in pain. Please keep fighting for and with her! God bless!
March 2, 2011 - 5:22pmThis Comment