Ideas for pain relief from Small Fiber Neuropathy (SFN)

@tigreyes2004 I wish that any one of the medications for neuropathy had done something for my neuropathy pain. I'm always glad to read posts from those who have been helped by meds like Gabapentin, Lyrica, Cymbalta and so on down the list. I tried them all, with no success. At least some of them just didn't work, unlike those with side effects ranging from annoying to sending me to the ER, incoherent and totally out of it. After the neurologist crossed off all themedications in his arsenal, I started in on the pain specialist's list. Of course my pcp had tried the medications that treat pain before I saw the neurologist (actually I saw 3 of them, and a couple others at the university hospital). It's been a tedious process. At some point in the journey the pain specialist suggested getting a spinal cord stimulator. It felt amazingly wonderful to have 80% of my pain gone!!! That worked for me for a year or so. I wish that it kept going indefinitely, but I guess that all good things must come to an end. After that, I had to, and continue to get the controller adjusted every 3 months. It's been longer than that this time because the pain specialist started me on a new medication two months ago and didn't want me to make any changes in other medications, or any change to the scs, so we'd know just how much the imipramine was doing. I'm glad to say that the daytime pain in my feet is down from 6-8 to 2-4. Real progress. For some reason they hurt more when I lie down at bedtime, still at 5-7. The lidocaine cream numbs the pain long enough to get to sleep, and the Uber Numb cream I found on Amazon does almost as well as the lidocaine. I see the pain specialist next week. He'll ask a lot of questions that I'll have a hard time answering.

I mentioned Lyrica, and it was the first medication that actually helped my neuropathy pain. It's also the one that put me in the hospital for a few days. Bummer! I know that lots of people have pain relief from it. My 5 siblings found Gabapentin worked for them. Oh well. I've always been a little different. Whatever works.

So, we all keep plodding along in the search for the as yet undiscovered mystery magic pain pill. At least we know we're not alone in the search.

I hope this post makes sense. I know that the medications I take tend to make it hard for me to verbalize my thoughts. I get a little confused sometimes, and I can't chalk it all
up to being 69. I can get away with that for only so long. I think my wife is more aware than I am of how all my meds affect me. In some ways it would be nice to turn back the clock, not just an hour, but more like 20 years, before this body of mine started to fall apart. I surely don't want to go back to being a teenager. Once was more than enough!

I do hope that you find the right medications, @tigreyes2004 ,and as Rachel says, don't count on others telling you what to do. Form your own answers.

Enough rambling for tonight. My feet are telling me it's time for morphine.

Good night. May you wake up in the morning refreshed and ready for the new day.

Jim

@tigreyes2004 I wish that any one of the medications for neuropathy had done something for my neuropathy pain. I'm always glad to read posts from those who have been helped by meds like Gabapentin, Lyrica, Cymbalta and so on down the list. I tried them all, with no success. At least some of them just didn't work, unlike those with side effects ranging from annoying to sending me to the ER, incoherent and totally out of it. After the neurologist crossed off all themedications in his arsenal, I started in on the pain specialist's list. Of course my pcp had tried the medications that treat pain before I saw the neurologist (actually I saw 3 of them, and a couple others at the university hospital). It's been a tedious process. At some point in the journey the pain specialist suggested getting a spinal cord stimulator. It felt amazingly wonderful to have 80% of my pain gone!!! That worked for me for a year or so. I wish that it kept going indefinitely, but I guess that all good things must come to an end. After that, I had to, and continue to get the controller adjusted every 3 months. It's been longer than that this time because the pain specialist started me on a new medication two months ago and didn't want me to make any changes in other medications, or any change to the scs, so we'd know just how much the imipramine was doing. I'm glad to say that the daytime pain in my feet is down from 6-8 to 2-4. Real progress. For some reason they hurt more when I lie down at bedtime, still at 5-7. The lidocaine cream numbs the pain long enough to get to sleep, and the Uber Numb cream I found on Amazon does almost as well as the lidocaine. I see the pain specialist next week. He'll ask a lot of questions that I'll have a hard time answering.

I mentioned Lyrica, and it was the first medication that actually helped my neuropathy pain. It's also the one that put me in the hospital for a few days. Bummer! I know that lots of people have pain relief from it. My 5 siblings found Gabapentin worked for them. Oh well. I've always been a little different. Whatever works.

So, we all keep plodding along in the search for the as yet undiscovered mystery magic pain pill. At least we know we're not alone in the search.

I hope this post makes sense. I know that the medications I take tend to make it hard for me to verbalize my thoughts. I get a little confused sometimes, and I can't chalk it all
up to being 69. I can get away with that for only so long. I think my wife is more aware than I am of how all my meds affect me. In some ways it would be nice to turn back the clock, not just an hour, but more like 20 years, before this body of mine started to fall apart. I surely don't want to go back to being a teenager. Once was more than enough!

I do hope that you find the right medications, @tigreyes2004 ,and as Rachel says, don't count on others telling you what to do. Form your own answers.

Enough rambling for tonight. My feet are telling me it's time for morphine.

Good night. May you wake up in the morning refreshed and ready for the new day.

Jim

Jim, have you tried the supplements + CBD Protocol recommended by the Solutions to PN group on facebook?

@terrydclaar

I haven't. Because I retired early on SS disability, we live well below the poverty level, so I try to choose whatever is covered by Medicare. I think I read recently from John that he shells out $6.00 a day. I'm blessed to have married up. My wife is a very good cook and is quite attentive to nutrition. We eat healthy a balanced diet, especially during the summer and fall when we can eat from my vegetable garden. There are several farmer's markets where we fill in the gaps. We have two peach trees, two pear,two apple, one plum and one crabapple. We had a good crop of peaches last year, so nothing this year. Same with the older pear and apricot trees. No apples yet. I had to plant a new plum tree last year, and the second apple. We should start having more of a harvest in the next few years.

I planted crookneck and delicata and winter squash, but an under ground squirrel or a pesky rodent pulled the delicata seedlings down to its underground dining room. I planted cucumbers, tomatoes, potatoes and mini pumpkins this year. I didn't get onions or peppers or snow peas planted. Maybe I'll feel up to planting them next year. I decided that corn is so cheap at the market, it wasn't worth the effort of planting them.

This is becoming a long response to your brief question. We take a variety of vitamins, and between the last frost in the spring and the first snow, I get six hours a day of exercise in the yard and gardens. So, I do my best to stay healthy.

Have you tried the supplement protocol or CBD? I know that I could get medical marijuana if I wanted to, but there are two reasons I haven't. The first one is that if my pcp knew I was using a marijuana product he would stop prescribing any pain medication. The other reason is $$$. It's $200 to get a doctor to prescribe it, another $200 for a permit from the state, and then it isn't covered by Medicare and it's expensive.

Cash flow sometimes drive a lot of choices.

Jim

It will be of great help if members could update on the use of ReBuilder and whether insurance covers it

Just found this page of discussion threads. I was diagnosed with SFN 2 years ago. I am on 2,400 mg of Gabapentin a day plus 50 mg of Elavil at bed time. The pain is still there at night especially. Anyone out there taking more gabapentin and feeling relief? I’ve tried Cymbalta and Elavil also and could not handle the side effect of EXTREME dry mouth. Anyone with some suggestions?

Are any of you taking Low Dose Naltrexone for neuropathy? I just found it mentioned on the Chronic Pain forum and followed the link - the information said that it can be useful to treat neuropathy and many doctors don't know about it yet. I will ask my pain doctor the next time I see him. Peggy

Are any of you taking Low Dose Naltrexone for neuropathy? I just found it mentioned on the Chronic Pain forum and followed the link - the information said that it can be useful to treat neuropathy and many doctors don't know about it yet. I will ask my pain doctor the next time I see him. Peggy