Charcot-Marie-Tooth Disease
Chronic Disease and me
My Charcot Marie Tooth story starts when I was just a toddler. I was taken to a specialist as my mother and grandmother were diagnosed and the doctors knew immediately as I walked around the office that I had it as well. From then on my mother raised me to be super independent and power through no matter what life threw at you. In the beginning I didn't let it get me down and it didn't bother me too much until I was in my 20's. Early on I just couldn't do sports or run and had special gym permissions because of my illness. I didn't feel much different than anyone else and no one really took anything from those excuses. I started to notice in my 20's that I couldn't stay awake as late as others and got tired easily. I knew I needed time for myself and although I kept myself busy I also had plenty of down time. In my late 20's is when my symptoms really began to get worse. After every day at work I would come home and cry do to the pain I had in my hands, my fatigue was endless and my feet cramped way too often.
My mother and I went to the CMT specialists at the University of Iowa and I obtain my first prescription which has helped me tremulously. I still have bad days where I hurt and I'm tired but my CMT right now if fairly under control.
Things that helps my CMT:
1) Gabapentin
2) Compression Gloves (I wear these during work)
3) Custom Orthotics (I wear tennis shoes every day)
For the past three years I've noticed certain things I didn't feel were CMT related and I knew wasn't right. After a few year suffering in silence I started this year to try and find out what was wrong with me.
About about 4 months of tests and personal research I asked my neurologist if I could have Fibromyalgia. He sent me to see a specialist and that appointment I was diagnosed. He told me about certain diets, exercise and medication to take during bad days. Every day is a journey with this new diagnoses and I'm still trying to deal with it on a daily basis. I know that stress is a HUGE factor and its super difficult to not get stressed out I try my best.
I still consider myself new to Fibromyalgia but I've done a lot of research and learn new things every day, week and month that I didn't know before. I love learning and I love telling others to be your own advocate because there is no one else who will.
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