Hi. Fentanyl is a med that is released in the body via the Duragesic Pain Patch. At least that is what it was about 10 years ago. Normally the patch is changed every 3 days. But with neuropathy patients it can be changed every 2 days. I will never forget when my husband brought the prescription to the pharmacist who said "This is wrong, it should be every 3 days". I said "Call the doctor". You should have seen the pharmacist's face when the doctor confirmed his own prescription. That is the ONLY med that worked for my husband. While he had breakthrough pain and took a vicodin once in a while, the Duragesic Fentanyl patch allowed him to continue to work. He started with a 25 patch and then over the year it had to be increased. The side effect in my husband's case was extreme constipation but that is the case with any controlled substance. it slows the digestive system (that's what the pharmacist told me way back then).

But while he was on it, it worked fine. Because he went over 100 of the patch, they had to titrate him down and then stop at 25. He could not get off the 25 by himself and had to go to detox but after one day they released him saying "We didn't detect any drugs in your system". He said 'what are you talking about, I walked in wearing a 25 pain patch". /They said "too bad", you are going home. He then had to do full withdrawal in the bed for one week.

Neuropathy is a *****. Hopefully (and this is the present) there are some other options for people with bad neuropathic pain.

My husband's pain was much worse 10 years ago. He takes nothing for it now. But he does have his days.

Sorry I can't be more helpful

Melody

You are fortunate (sorry to say that under your present condition) that you were finally were diagnosed. You probably got the run-around that some of us have had where MDs kept implying that things were only in our heads or that we were drug-seeking for narcotic pain relievers. It really p***** you off when you are in so much pain.

There have been posts on full body small nerve fiber neuropathy (which is MUCH MORE RARE than typical SFN) and it is referred to as:

non-length dependent small fiber neuropathy
non-length dependent small fiber ganglionopathy
Small fiber neuronopathy
sensory ganglionopathy or sensory neuonopathy

Your use is the first time it's been called full body small nerve fiber neuropathy, but that's pretty descriptive. I've also heard it called sunburn syndrome.

When I was at wits end, I found a couple of academic articles that really helped me understand that I wasn't just imagining this. You can find the references in this string:

http://neurotalk.psychcentral.com/thread189923.html

Also, a most experienced person with this is moderator glentaj who is very knowledgeable. You should check out his posts especially when he is talking about ganglionopathies.

The discussions on related issues occur on the Peripheral Neuropathy board. Feel free to PM me if you want copies of the articles I referenced or just to talk as I have NLD SFN/G also!

...To a pain management doctor from one of the MDs familiar with your case. Pain management docs get thousands of "walk-ins" and a significant portion are people looking for drugs for abuse purposes. Also once you are referred, bring the articles I talked about earlier and some statements from a neurologist as to the pain levels you are likely experiencing. Good Luck,

Mike

Is yours length dependent? Is it all over your body, constant, intermittent/random, or lower body like feet?

If it is in your feet it couldn't hurt to try a diet called "nutritional ketosis" which lowers the glucose you have. Maybe they are wrong about diabetes and it is just the glucose that is toxic to the nerves. Search for "Jimmy Moore" and "nutritional ketosis".

currently on 300mg of Lyrica, guess im one of the lucky ones, have no side effects and 80% pain reduction