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!

@lioness

@avmcbellar I had to do alot of research to find the chart. But I found it on http://www.foryourmassageneeds/how many drops of essential oil in diffuser.com

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@avmcbellar Sorry that's the wrong site I,LL have to find it again

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@lioness

@avmcbellar It's between 3-5 Gtts depending how much water is used but there's a good chart on website

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@avmcbellar I found the website cushyspa.com but if you want to get into essential oils look for essential oil.com then there are so many different sites to look at at to what each one helps with and how to mix your own. I got all mine from the internet .

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@lioness Thank you! I will find the chart. Exactly, the ratio of water and oils depends on the strength of the smells.

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@avmcbellar

@lioness Thank you! I will find the chart. Exactly, the ratio of water and oils depends on the strength of the smells.

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🤗

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Has anyone tried an opioid drug called Buprenorphine? From what I read, it is supposed to be very strong, but less addictive and you don't have to keep increasing the dose. There is an article on the NIH website that claim over 80% substantial pain relief.

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@calliopy2

I live alone. Have a son in Nebraska. I am wheelchair dependent but do walk with 2 canes. Spinal stenosis makes the muscles week and the potential to fall scares me. I go everywhere in the chair. Peripheral neuropathy is a progression of spinal stenosis. Cant sleep because of the symptoms. I am good during the day and keep busy. Have been to 3 MD's for this problem but left their office without any help from them. I have tried CBD lotion, aspercreme, warm soaks with mag sulfate. The symptoms reduce for a few hours, but not long enough to sleep more than 3 hours. Would appreciate what others have done to reduce symptomology

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Hi, @calliopy2 – wondering how you are doing, especially if you are getting any better sleep?

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@cwallen9

Has anyone tried an opioid drug called Buprenorphine? From what I read, it is supposed to be very strong, but less addictive and you don't have to keep increasing the dose. There is an article on the NIH website that claim over 80% substantial pain relief.

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@cwallen9 I'm going to dig around and see what information I can find. The name hints that it might be a combination of Bupropion and Morphine. I have been taking those two meds for a while. Thanks for mentioning it.

Jim

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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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Hi @terrydclaar, Research done in the Netherlands in 2018 with Phenytoin cream talks about Phenytoin or Phenytoin Sodium. Do you know which type you use. How much does your compounding pharmacy charge for a 60 gram supply? Would your pharmacy be willing – don't know if this is necessary – to share their compounding information with my pharmacy? So glad that it works for you.
Thanks,
Jim

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@helennicola

Chris, thank you so much for your advice and insight, having another personal trusted opinion is invaluable. I think that I keep waiting to feel better mentally and trying to employ “mindfulness” because I think that issues outside of my neuropathy have caused my present lapse in the ability to feel good. But, I guess the reason doesn’t really matter. I think I’ll wait a little while longer and see if there is any change before trying the nortriptylene. Helen

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Good evening, @helennicola. Hi there, I came across a post from you about mindfulness and nortriptyline. I am just wondering, what is the status of your decision about nortriptyline? If you can, please tell me what factors were important to you. Are you still working on the mental side of you by practicing mindfulness? I hope you are well and handling our unusually stressful community issues with strength.
Be safe and protected,
Chris

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Hi Chris, I decided not to take any antidepressants because I felt I didn’t want to add to or worsen the side effects from gabapentin. I think at times I could definitely benefit but don’t know if the risk/reward ratio is worth it. I do try to practice mindfulness whenever I start to feel the negativity coming on, sometimes just crying helps. I hope you are feeling better and have found relief from the itching. Be well and stay safe. Helen

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