Kelly75
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I do not have FMS myself, but my best friend does and I am her "caretaker" to a point. Her experience with rheumatologists and so-called FMS specialists has been similar -- BAD. TO find her a doctor, I actually called the local hospitals and looked online for a somewhat local support group for FMS (usually lumped together with CFS) and they referred her to a doctor who has been a God Send. Also, she goes to a pin management clinic but has come up against the same things you did. She cannot take anything Anti-epilectic (neurontin, lyrica, topamax, etc) and if you have any sort of depression, call the company to discuss it before you start one. I also suffer from chronic pain and Neurontin sent my depression off the charts. Up to 25% of people had that problem according to Pfizer not the lower statistics that my doctor told me. They are VERY honest and a great resource. She also has a vitamin regimin (that she jokes is like her diet because she is always full of pills). Malic Acid and Magnesium helped her legs a lot and also Acidophilus (Floragen) daily helps by keeping any excess fluid from being retained and adding to her pain. Pain meds help a little, muscle relaxants help some, but it was antianxiety medication (lorazapam) that is the only thing that has truly helped her calm the nerves. Also, there are lidocaine patches (Lidoderm) that you can put on where the nerves seem the worst (she puts them on her thighs and they help her entire leg, but they are VERY expensive if your insurance does not cover them. So, she now uses a lidocaine ointment that I put on her legs and feet twice daily that helps significantly and it is not overly expensive, works right where you put it, and most insurance covers it. I hope this helps a little. If I can help more or anything, please let me know. I have read seemingly every book on FMS I can get my hands on, met with nutritionists for her, interviewed countless doctors, etc. (She has the "brain fog" that is commonly associated with FMS.) Take care! Kelly |
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