Ideas for pain relief from Small Fiber Neuropathy (SFN)

What kind of neuropathy do you have? Do you mean it would help each time you used it for one day, or only helped you for one day total?

I'm happy to hear his Dr is working on a path forward. Care and commitment is so very important. My daughter is 18 and has different diagnoses with different challenges but, challenges nonetheless. I feel both you and your sons pain.
All the best,
Rachel

@katec I'm surprised that he had a drg. That's, according to the surgeon I talked with, pretty much a last resort. She wants to work on a few other things before we go that route. My scs was wonderful the first year or so. Now it needs fairly regular tweeking, roughly every 3 months. It's been a balancing act for a while, trying new medications without overlapping each other, then not knowing what's causing what. You understand. It gets complicated. It's plenty hard for seniors developing sfn, but having it as a teenager is a whole different level. I don't know how I would have handled it at his age. Just being a teenager carries with it a lot of challenges. Is he doing ok mentally and emotionally? I began having sfn symptoms several years after I started being treated for clinical depression, anxiety disorder, PTSD and suicidal ideation. Having chronic, intractable pain piled on top of those mental health issues is hard to cope with.

I've always known that being a whole person meant integration of the physical, mental, emotional and spiritual. Each part of our self affects the other parts. Speaking for myself, as pain increased, so did my level of depression. I have to stay aware of my mental health when I'm not well physically or spiritually. My doctors do a good job of treating all of me. My PCP, for example, always asks about my depression and other issues.

I'm certain that you are feeling a lot of stress and distress, watching your son in pain. Take care of yourself so you can be there for him.

Jim

Hello @me1229 -- Welcome to Connect. There is another discussion where your post will receive more visibility and you can meet other members that share your symptoms and learn what helps them. I'm tagging our moderator @lisalucier to see if we can move your post to the following discussion where other members are sharing what helps them:

> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN)
-- https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

I occassionaly have what I think could be classified as extreme dry mouth and found that Biotene mouthwash (over the counter brand for dry mouth) has helped me a little. Have you tried any type of mouthwash or has your doctor recommended anything?

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?

I am taking gabapentin 500 mg 6x per day for total of 3,000 mg. This is the absolute upper limit dosage that my neurologist and PCP will prescribe. Am now finding this is barely adequate, especially at night, so have ordered CBD salve to try for the first time. Will update after I receive and start using.

I started with a low dose of Gabapentin & now I'm up to 500 mg a day. I know it makes you tired & sleepy so they have me take 1 Gabapentin in the morning & 1 in the afternoon & then 300 mg at night. I take it for a few days & then I feel bad again so they keep increasing it. If you take the highest amount of Gabapentin & it doesn't not help, what are you suppose to do? I'm afraid to take Lyrica because I have heard a lot of people have bad side effects & the elavel is not too goofd either. What are we suppose to do. I am also on Cymbalta & I think it helps me get through the day because it gives me energy. Actually my husband says it makes me hyper. I hope we can get out of this pain & find some relief. Best of luck to all of you out there suffering like me.

My advice is not to let others influence you too much in the way of being afraid to try something that may benefit you. Best to speak with your Doctor then form your own opinion through trial and error. Good luck with the process.

I suspect your concern is one that many of us have at least thought about. I have decided to cross that bridge when I come to it instead of fretting about it in advance - but perhaps that easier for me because 300 mg of Gabapentin per day is currently keeping my pain under control...

@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