Ideas for pain relief from Small Fiber Neuropathy (SFN)

Posted by somisgirl @somisgirl, Fri, Sep 6 4:43pm

I just wanted to pass along some ideas for those of you with idiopathic small fiber neuropathy. I am a 60-year-old female in excellent health other than the onset of this about a year ago. I do not have diabetes or any other detectable health issues.
I started some new things a few weeks ago and this week I have had some remarkable relief. I am not sure if what I have done is why, or which thing might have helped, but still wanted to pass this along just to give some of you some things to try.

I wear compression socks. This seems to help with the pain and pressure I feel in my feet and ankles.
I started taking Evening of Primrose oil twice a day.
I have cut my caffeine intake by at least two-thirds and now drink mostly green or black tea. I had heard that caffeine could irritate nerves…worth a shot.
I exercise, which I have been doing for over 20 years. I think it improves circulation which I think really helps with nerve health.
I added niacin. I will aid in blood flow, also good for circulation.
I use a cream called DMSO which i put on my feet and ankles in the morning (numbs the pain)

I don’t know if any of this could be helpful for you or not, But I seem greatly improved recently……I have tried everything and am always looking for new things to try in order to function with this awful condition.
I am still taking 600mg of Gabapentin 3 times a day and 20 mg Citalopram once a day and have been for 9 months. I do not take any other medications.

Blessings to all of you and I hope there is a cure some day. I intend to keep looking for solutions that do not require medications!

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?

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@katec

Thank you so much for all your suggestions and insight!

We tried a DRG (dorsal root stimulator) last summer but he didn’t see any relief from it. This was done by a pain specialist before we had a diagnosis of SFN, this was back when the pain doctor was just trying to treat his pain. We’ve been to a few pain doctors before we had a diagnosis and they have been pretty nice and have tried many meds, nerve blocks, etc and it’s always challenging to find one willing to work on a kid. Now that we have an official diagnosis we haven’t been back to a lain doctor since his primary doctor is working on a treatment plan for him while we wait for the last of the genetic testing to come back. We are in a bit of a holding pattern right now as his SFN doctor is a bit surprised that he hasn’t responded to any medications yet. The doctor is talking to “other experts” to see what direction we should go in. I feel confident in our doctor, it’s just hard explaining to a 15 year old boy who is in pain all the time, he has to hold tight while we figure this all out. It’s been 4 years since his pain started and only 5 months since we found out it’s SFN, so he knows this isn’t a quick fix😉

Thank you for everyone’s advice! I’m always looking for answers for him and it’s nice to be part of a group that “gets it”!!

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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

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@katec

Thank you so much for all your suggestions and insight!

We tried a DRG (dorsal root stimulator) last summer but he didn’t see any relief from it. This was done by a pain specialist before we had a diagnosis of SFN, this was back when the pain doctor was just trying to treat his pain. We’ve been to a few pain doctors before we had a diagnosis and they have been pretty nice and have tried many meds, nerve blocks, etc and it’s always challenging to find one willing to work on a kid. Now that we have an official diagnosis we haven’t been back to a lain doctor since his primary doctor is working on a treatment plan for him while we wait for the last of the genetic testing to come back. We are in a bit of a holding pattern right now as his SFN doctor is a bit surprised that he hasn’t responded to any medications yet. The doctor is talking to “other experts” to see what direction we should go in. I feel confident in our doctor, it’s just hard explaining to a 15 year old boy who is in pain all the time, he has to hold tight while we figure this all out. It’s been 4 years since his pain started and only 5 months since we found out it’s SFN, so he knows this isn’t a quick fix😉

Thank you for everyone’s advice! I’m always looking for answers for him and it’s nice to be part of a group that “gets it”!!

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@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

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@me1229

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?

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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?

REPLY

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?

REPLY
@me1229

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?

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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.

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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.

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@tigreyes2004

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.

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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.

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@tigreyes2004

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.

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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…

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@tigreyes2004

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.

Jump to this post

@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

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@jimhd

@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

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

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

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@jimhd

@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

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Hi Jim
Your post was not difficult to understand. In fact, to me it was poetic..
The plain fact of the matter is that, for most patients, the path to finding something to help is always an "adventure" and sometimes
fruitless.
The medical profession has little to add to this problem, other than making a professional diagnosis, and offering standard medications, that work somewhat, and, sometimes. After that, you're essentially on your own. Forums such as this may offer effective alternative treatments and "tricks". At some point, I believe the docs will find a specific diagnosis, and treatment, perhaps a cure. No one else will.
I find that standing up to the symptoms, and challenging, and even laughing, at them, at times, works as well as anything. After all, it's your body..
Hang in, and do your best.
Best wishes to you!
Jeff

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@terrydclaar

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

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@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

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@jimhd

@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

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Here's a link to a nutrition documentary I saw on Netflix, 'What The Health':
https://www.bing.com/videos/search?q=what+in+the+health+documentary&view=detail&mid=78262E9F3B8F32A42EBC78262E9F3B8F32A42EBC&FORM=VIRE
I also watched Game Changers & Forks Over Knives

I'm back to being a vegan.

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