Quote:
Originally Posted by KrisC
Hello,
My name is Kris. I am a 38 year old mom of three kids, ages 8, 6 and 3. Until last fall, I was active and healthy, exercising every morning, chasing my kids, cleaning my house, and on and on.
Then last fall my inner ankle started hurting. Burning and aching. I spent six months going to orthopedic doctors and having imaging done. In april, my other ankle started aching. In the last few weeks it also progressed to burning, and I'm having some burning off and on in my arm. Some days my ankles feel decent and somedays they burn. Today they're burning.
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I spent the last week thinking I had RSD/CRPS. I was just seen by a neurologist at MGH yesterday who said she doesn't think it's RSD. She said it's small fiber predominant peripheral polyneuropathy. She's ordered a skin biopsy and autonomic testing, which will happen in the next two weeks. I had started neurontin and she increased the dose. It doesn't seem to help yet.
I am so sad. I thought I would have surgery and be fixed and now I realize this is it: pain. The neuro and my husband have ordered me to call my primary care for an antidepressant. I just did but I feel like nothing will help. And I never had to take drugs before. Now I will for the rest of my life.
My neuro told me to take only my multivitamin and that's it. Usually I take flax and omega three and calcium and vitamin D. She said just the multi. Everything I read to take is vitamins and I wish I could try some but for now she said no. I want to try everything, even the rebuilder. I want to heal!
Anyway, I just wanted to introduce myself. Sorry I am so doom and gloom. I am having a hard time adjusting, and am still concerned about RSD.
Best,
Kris
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Hello Kris,
I have had my symstoms for over 10 years, I have no feeling at all in my feet which makes me lose my balance once in awhile, the numbness is up my leg to mid calf and my fingers are getting numb also. I think what I would like to say is that not all is as bad as you may think right now. I know how awful it is to have someone tell you there is no cure and the pain will get worse. But I have found my own way to deal with this disease. Last year I went to the Cleveland Clinic for a 2 opinion. I have stopped taking all of the medications and I am starting over again. Its been tough and some days the pain is more than I can stand, but I have found that working out really helps me. I'm not able to walk like I use to and I can't do aerobic any more, but I have found swimming and I have to tell you its like a wonder drug for me. I feel strong and I'm able to swim laps, I started doing 1 now I can do 20. I guess what I would like to say is don't give up, and only you know how you feel all the doctors in the world really don't know the pain we feel. I hope you find what ever will work best for you, but can always come online and find someone who will be here to give you some great advice and just listen.
Have a great day,
Kathy