Originally Posted by judiesva
Susanne-may I ask what kind/feeling of pain you have in your legs? My neuro thinks I have a "genetic" form of pn. He has never mentioned any treatment for pain and only started me on gabapentin (which did kill most of the electic jolts) but I really did not like how I felt on it and have discontinued taking it. My feet and legs constantly ache and burn. Sometimes my feet feel so swollen, like they will explode, but when I look at them they are perfectly fine. I especially have a hard time walking when I first get up in the morning. I have some hydrocodone (vicodin) left over from a previous surgery and take it every once in a while if they pain becomes unbearable. Are most neuro's open to prescribing pain meds?
No, they are not. That doesn't mean that you don't need them, but they prefer pain medication be handled by a family doctor or pain specialist who sees you more often, and can monitor your usage, reactions, and pain levels. In fact I was "dismissed" by my neurologist as hereditary neuropthies are not treatable and the only care is basically mechanical (AFO's, canes, etc.) or palliative. She did send me to Johns Hopkins for a second opinion and more testing, but her original dx of CMT was unchallenged.
What tests have you had? My EMG/NCS showed large fiber neuropathy, the skin biopsy at Hopkins showed advanced SFN. I have visible muscle wastage. My pain is all over the place, but the worst of it feels like it comes from the long bones in my legs, and fom the stiffness in my feet, ankles, and legs. It is primarily a crushing, twisting feeling. I also have pinched nerves at wrists and elbows, slight, occasional clawing in my hands, and pain and stiffness along my hands on the pinky side. It has definitely gotten a lot worse in the past few years, despite my neurologist's insistence that it "isn't supposed to hurt this much or get worse this fast." For most of my life I was merely clumsy and uncoordinated, about five years ago it started to get much worse.
If you have a good relationship with your PCP, I would start exploring pain medication options there. Many neuropathy patients with moderate to severe pain are on some combination of gabapentin, an anti-depressant, and an opiate.
Experimenting with what you have is probably not advisable long term, but if you were to find that it helps...be careful how you present it to your doctor. You want it to seem like his idea.
If the gabapentin was working, you may want to give it a longer trial. It is a very safe drug and sometimes the side effects pass after a while.