Originally Posted by Susanne C.

It is really hard to describe, honestly when I try my doctor just cuts me off and writes the Valium prescription. He is at least as embarrassed as I am and that is saying a lot. We leave it at "muscle spasms" which it is. The worst pain is episodic, the burning waxes and wanes through the day but is a daily issue.
There is an Internet forum for pudendal neuralgia which offers better descriptions, yes the pain is horrible, impossible to sit still, just pacing. I have tried hot baths as well as ice, but the Valium helps most, sometimes it takes two of the 5 mg. but it works pretty quickly.
Sitting on hard chairs for too long and too much time in the bathroom seems to trigger the sharp shooting pain.
i think it is a poorly understood condition but it makes sense that as the neuropathy moves up into hips and waist area that it would affect EVERYTHING. My skin biopsy six years ago showed the nerve fibers gone at knee level and breaking down at hip level. I have burning around my waist and ribs now too.
I completely understand how awful this is.

Originally Posted by en bloc

Do you mean 12.5 mcg...instead of 125mcg? 125 mcg would be super huge dose.

Yes, he is on 125mcg every 48 hours after previously being on Hydromorph Contin 90mg, Gabapentin 3600 mg, as well as the Amitriptylene, daily. Lyrica did nothing for him. So this is not his first course of action for the pain.

These meds had been increased gradually over the last 10 years or so. About 2-3 months ago, over the period of a weekend, they just seemed to just stop working. His feet had always been the main issue and gradually his hands became effected as well, but that weekend the hands got 600% worse. He couldn't even hold a cup without it setting the pain off. He then seemed to reach the end of his coping mechanisms and completely broke down.

Thank goodness for a wonderful doctor (GP, not Neuro) who when I got him in after the weekend put him on 50mcg of Fentanyl, and gradually increased it.

My reason for asking is that he does have some quite good days, and compared to how he was that weekend, he is 100% improved. But he still does get days when his hands are bad and the smallest things set them off - holding a cold drink, holding anything rough etc. He really doesn't want to increase the meds, and is wondering if he is expecting too much?

He is lucky in that he has very little side affects and is able to function well.

Linda

Originally Posted by Susanne C.

It is really hard to describe, honestly when I try my doctor just cuts me off and writes the Valium prescription. He is at least as embarrassed as I am and that is saying a lot. We leave it at "muscle spasms" which it is. The worst pain is episodic, the burning waxes and wanes through the day but is a daily issue.
There is an Internet forum for pudendal neuralgia which offers better descriptions, yes the pain is horrible, impossible to sit still, just pacing. I have tried hot baths as well as ice, but the Valium helps most, sometimes it takes two of the 5 mg. but it works pretty quickly.
Sitting on hard chairs for too long and too much time in the bathroom seems to trigger the sharp shooting pain.
i think it is a poorly understood condition but it makes sense that as the neuropathy moves up into hips and waist area that it would affect EVERYTHING. My skin biopsy six years ago showed the nerve fibers gone at knee level and breaking down at hip level. I have burning around my waist and ribs now too.
I completely understand how awful this is.