Ideas for pain relief from Small Fiber Neuropathy (SFN)

Posted by somisgirl @somisgirl, Sep 6, 2019

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!

@katec

My 15 year old son, who has idiopathic SFN, tried LDN for about 5 months. He started at a very low dose and the max was 4.5mg. He unfortunately did not get any relief from LDN and discontinued it. It was made at a compounding pharmacy. Like any treatment, I’m sure someone will get good results from it and if you’re in our situation where nothing has brought him any kind of pain relief yet, it’s always worth trying if your doctor thinks it’s a good idea.

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@katec

I'm fortunate not having sfn hit me until I was 60 something. Having it as a teenager is pretty tough. How does it affect your son? Has he been able to find any helpful treatment?

I learned that I had pn 5 or 6 years after I realized that I had major depression. Adding chronic intractable pain to that has complicated my life. Pain and depression feed off each other. I've been blessed to have some excellent health professionals who have treated both the physical pain and the mental pain. I've also been encouraged by the members of this group.

Welcome to Connect. There's a lot of good support here, as well as a lot of good information. I hope you find some helpful ideas for treating your son's neuropathy.

Jim

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@jimhd

@katec

I'm fortunate not having sfn hit me until I was 60 something. Having it as a teenager is pretty tough. How does it affect your son? Has he been able to find any helpful treatment?

I learned that I had pn 5 or 6 years after I realized that I had major depression. Adding chronic intractable pain to that has complicated my life. Pain and depression feed off each other. I've been blessed to have some excellent health professionals who have treated both the physical pain and the mental pain. I've also been encouraged by the members of this group.

Welcome to Connect. There's a lot of good support here, as well as a lot of good information. I hope you find some helpful ideas for treating your son's neuropathy.

Jim

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Thanks so much for your kind words.

So far his SFN only affects his feet. He has severe pain on the bottom of both feet and it’s worse weight bearing but they hurt ALL the time. It’s been hard watching him go from a kid who never sat down and played soccer 5 days a week to someone who can’t even walk around the supermarket without being in tears from the pain….certainly not what we expected his teenage years to be like.

We have tried so many medications, therapies, supplements, elimination diets, footwear, etc and not a single thing has even eased his pain in the slightest. His pain is worse everyday. We are lucky to have a caring knowledgeable doctor, and even though she’s in Boston and we are in Texas she keeps close tabs on him, but she even admitted the other day she isn’t sure how to proceed with his treatment and will have to take with the “other experts” to get their opinions. So far his testing shows nothing out of the ordinary so he’s labeled as idiopathic so the direction of treatment is unknown.

I’m hoping some other people here have had some success finding some pain relief that we haven’t thought of yet! Thanks for any and all advice!

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@katec

Thanks so much for your kind words.

So far his SFN only affects his feet. He has severe pain on the bottom of both feet and it’s worse weight bearing but they hurt ALL the time. It’s been hard watching him go from a kid who never sat down and played soccer 5 days a week to someone who can’t even walk around the supermarket without being in tears from the pain….certainly not what we expected his teenage years to be like.

We have tried so many medications, therapies, supplements, elimination diets, footwear, etc and not a single thing has even eased his pain in the slightest. His pain is worse everyday. We are lucky to have a caring knowledgeable doctor, and even though she’s in Boston and we are in Texas she keeps close tabs on him, but she even admitted the other day she isn’t sure how to proceed with his treatment and will have to take with the “other experts” to get their opinions. So far his testing shows nothing out of the ordinary so he’s labeled as idiopathic so the direction of treatment is unknown.

I’m hoping some other people here have had some success finding some pain relief that we haven’t thought of yet! Thanks for any and all advice!

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@katec

I know just what you're saying. I've seen neurologists, neuro specialists at a university hospital, a pain specialist, a pain therapist and my PCP. I'm blessed to have a PCP who is happy to refer me to specialists.

Have you considered a spinal cord stimulator implant? I had one put in in June of 2017. It reduced my pain by more than 75%. I've learned that everything I've tried gives me only temporary relief. I know that the stimulator is still helping with my pain, but not as much as it did the first year. After that, the pain got worse, and the company rep adjusted the settings, and since then, I have to have it adjusted every 3 months. Each time it gives me pain relief, but gradually the pain gets worse and the rep changes the settings. It's pretty much a 3 month cycle. It's helped me enough that I'm willing to recommend it to others.

Maybe you've already heard all of this. I think that the Burst DR stimulator is probably the best – that's what mine is.

The burning pain was only in the bottom of my feet, in the ball of my feet. Now it's in the top of my feet, as well. Walking, especially on hard surfaces, is very painful, but even on good days, when I lie down in bed, the pain kicks in with a vengeance.

My taste in shoes has changed. Now I look for shoes with a wider toe bed, and roomy enough to put in some gel insoles. If necessary I buy shoes a size larger than my size 13 feet. I especially like the Air Plus industrial work insoles. They're less than $9.00 at Walmart. The shoes I've started collecting are Clark's, but I'm still picky, even with the Clark's label. I found a pair of Nike's that are comfortable enough for working around our place.

I have a good pain specialist who has gone down a long list of medications, trying to find one that helps. Last month, he had me start Imipramine, and it's really helped a lot. The only other medication that helped was Lyrica, but I had a bad reaction to it that put me in the hospital for a few days. I've also taken morphine sulfate contin for several years, and it takes the edge off the pain, but it doesn't do the whole job. I tapered off it twice, and after a few weeks without it, my feet hurt much more, so I went back on the morphine.

I haven't tried CBD oil or medical marijuana, but a lot of people here in Connect have found it helpful.

Has your son tried topical cream of any kind? Do you have a pain specialist? Mine has been very helpful. The pain therapist I saw for 6 sessions showed me some useful techniques for dealing with the pain.

The neurologist at the university hospital confirmed my diagnosis of small fiber idiopathic peripheral neuropathy, and noted the beginning of autonomic neuropathy.

Finding a treatment for the symptoms of neuropathy can be a long, frustrating process. It seems to be a matter of trial and error. I empathize with your son. I never experienced pain before that never stopped, and was bad enough to make me cry. I hope that you'll find something that will bring relief to your son.

Jim

REPLY
@katec

My 15 year old son, who has idiopathic SFN, tried LDN for about 5 months. He started at a very low dose and the max was 4.5mg. He unfortunately did not get any relief from LDN and discontinued it. It was made at a compounding pharmacy. Like any treatment, I’m sure someone will get good results from it and if you’re in our situation where nothing has brought him any kind of pain relief yet, it’s always worth trying if your doctor thinks it’s a good idea.

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Hello. Has your son received lidocaine infusions for pain? My Neurologist recommended I try and I have been receiving them weekly for over 4 months. Like any other treatment, it provides partial pain relief. Some days more than others. I have realized it's all about the percentages.
Rachel

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Thanks for your input.
I also take Gabapentin, 1500 mg daily, and don’t really know I’d it’s working that well for me.
Past few days nerve pain unbearable in my feet and ankles.
Just seems to come on suddenly, mostly in evening.
I take Ibuprofen round the clock, but I’m thinking of starting Evening Primrose Oil after reading your post.
I’ll try anything at this point.
Marilyn M

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@burningfeetinphoenix

@terrydclaar – You have to find a compounding pharmacy in your area or on-line that can make it for you. If you do get a prescription for Phenytoin 10 percent. A 60 gram supply is good for 30 days…Phenytoin is the active ingredient It is brand name Dilantin I assumed micronized for compounding. You can go on-line and find the compounding instructions…my pharmacist had to track down some of the compounding ingredients so it about 10 days or so. This is not a common request. I apply 2 times/day. Pam

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I started seeing a pain pharmacist and she prescribed the Phenytoin Cream (after I asked about it – I wrote it down after seeing your post). We went to a local compounding pharmacy and the pharmacist said the Phenytoin active ingredient is super expensive (something like $1000 per gram, and he would need 30 grams of it. This does not seem right – especially since some of you have been able to get it. He recommended a Naltrexone cream instead. Do you have any websites where you get the Phenytoin at a reasonable cost?

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@cwallen9 Phenytoin is the generic Dilantin, a very old seizure medication that is dirt cheap. Your pharmacist is wrong! I got 60 grams compounded. It is 10% Phenytoin compounded. It cost me $60.00 for a 30 day supply – 2 gm/day. The Phenytoin is micronized and compounded with several ingredients to make a topical cream. It took my pharmacist a while to find the additional ingredients. Another forum member for the Phenytoin 5% compounded for a $16 cop-pay with her insurance. I could not use my insurance for this as I have Aetna and can only go to CVS. I got this from a small, local, independent compounding pharmacy. BTW shelf life is 30 days as after that it may not stay compounded…Oh and my feet are still not burning and I had shoes and socks on all day today. Since I just started Cymbalta at the lowest dose this may be a factor also…It also helps with wound healing. Pam

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@harley22

Thanks for your input.
I also take Gabapentin, 1500 mg daily, and don’t really know I’d it’s working that well for me.
Past few days nerve pain unbearable in my feet and ankles.
Just seems to come on suddenly, mostly in evening.
I take Ibuprofen round the clock, but I’m thinking of starting Evening Primrose Oil after reading your post.
I’ll try anything at this point.
Marilyn M

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@harley22

Hi Marilyn. What meds have you tried before Gabapentin? I think I've tried at least 20. Keep at it.

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Thanks for the input. I am working with a pain medicine pharmacist, so I will talk to her about it again. The pharmacist that said it was really expensive is a local, compounding pharmacy. I wonder if I could get the phenytoin cream from your pharmacy? Could you give me the name? I am trying something called the ReBuilder that is supposed to repair nerve damage. It is like a TENS unit, but it supposedly measures your nerve signals and sends them through your body. I have used it at physical therapy and just bought one of my own. It is expensive (~$700 to $1200). I am going to submit it to insurance, but I am not sure it will be covered. I will keep you (and everyone else) up to date on whether it works or not. You can Google "Rebuildermedical.com" to find out more info.

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@cwallen9 I will PM you with details…Pam

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@cwallen9 Have you considered the Calmare therapy? Similar to TENs. It is endorsed by the Mayo Clinic. I've considered it but right now my pain is under control. Just a thought…Pam

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I haven't heard of this device, but it sounds similar to the ReBuilder. I will look into it. Thanks again for the info.

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@cwallen9 and @burningfeetinphoenix Mayo Clinic has a patient story on the Calmare Scrambler device that may be helpful.

Breaking Away From Pain With the Help of ‘The Scrambler’
https://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler/

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@jimhd

@katec

I know just what you're saying. I've seen neurologists, neuro specialists at a university hospital, a pain specialist, a pain therapist and my PCP. I'm blessed to have a PCP who is happy to refer me to specialists.

Have you considered a spinal cord stimulator implant? I had one put in in June of 2017. It reduced my pain by more than 75%. I've learned that everything I've tried gives me only temporary relief. I know that the stimulator is still helping with my pain, but not as much as it did the first year. After that, the pain got worse, and the company rep adjusted the settings, and since then, I have to have it adjusted every 3 months. Each time it gives me pain relief, but gradually the pain gets worse and the rep changes the settings. It's pretty much a 3 month cycle. It's helped me enough that I'm willing to recommend it to others.

Maybe you've already heard all of this. I think that the Burst DR stimulator is probably the best – that's what mine is.

The burning pain was only in the bottom of my feet, in the ball of my feet. Now it's in the top of my feet, as well. Walking, especially on hard surfaces, is very painful, but even on good days, when I lie down in bed, the pain kicks in with a vengeance.

My taste in shoes has changed. Now I look for shoes with a wider toe bed, and roomy enough to put in some gel insoles. If necessary I buy shoes a size larger than my size 13 feet. I especially like the Air Plus industrial work insoles. They're less than $9.00 at Walmart. The shoes I've started collecting are Clark's, but I'm still picky, even with the Clark's label. I found a pair of Nike's that are comfortable enough for working around our place.

I have a good pain specialist who has gone down a long list of medications, trying to find one that helps. Last month, he had me start Imipramine, and it's really helped a lot. The only other medication that helped was Lyrica, but I had a bad reaction to it that put me in the hospital for a few days. I've also taken morphine sulfate contin for several years, and it takes the edge off the pain, but it doesn't do the whole job. I tapered off it twice, and after a few weeks without it, my feet hurt much more, so I went back on the morphine.

I haven't tried CBD oil or medical marijuana, but a lot of people here in Connect have found it helpful.

Has your son tried topical cream of any kind? Do you have a pain specialist? Mine has been very helpful. The pain therapist I saw for 6 sessions showed me some useful techniques for dealing with the pain.

The neurologist at the university hospital confirmed my diagnosis of small fiber idiopathic peripheral neuropathy, and noted the beginning of autonomic neuropathy.

Finding a treatment for the symptoms of neuropathy can be a long, frustrating process. It seems to be a matter of trial and error. I empathize with your son. I never experienced pain before that never stopped, and was bad enough to make me cry. I hope that you'll find something that will bring relief to your son.

Jim

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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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@cwallen9

I haven't heard of this device, but it sounds similar to the ReBuilder. I will look into it. Thanks again for the info.

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I tried the ReBuilder about 5 years. It helped a great deal for one night/day. Further treatments did not help so discontinued it.

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