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!

Interested in more discussions like this? Go to the Neuropathy Support Group.

Hi @hotfeet, You might want to read through the following discussion to learn what others have shared about low dose naltrexone:
-- Low Dose Naltrexone and Neuropathy:
https://connect.mayoclinic.org/discussion/low-dose-naltrexone-and-neuropathy/

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Has anyone tried Hyperbaric Oxygen Therapy for PN?

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@artscaping

Good evening @frattmaa and @jesus1970, I just want to make sure I understand your information. Regarding the mailing of medical cannabis products. Crossing a state line is illegal for medical cannabis products when one of the states has not legalized medical cannabis.

For example, Papa and Barkley is located in CA. They have two websites: http://www.papaandbarleycbd.com only sells and ships CBD products with less than that very small percentage of THC. These can be shipped anywhere

The second website, http://www.papaandbarkley.com sells products with psychoactive THC to dispensaries and to buyers within the state of CA.

And just a note.....I actually started with gummies 10 years ago. I found their content to be rather inconsistent.....sort of like brownies. However, they worked for me until I became more knowledgeable and began to use tinctures.

Chris

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Your state has to have either approved medical marijuana or recreational or both for you to be able to get some THC products . Since the federal government still lists marijuana as a class 1 drug it is illegal to send any THC product through the mail. Even in states that have legalized it.
Also about the inconsistency concern, a lot has changed even in the last year. In order for any product containing THC to be sold it has to list everything that made the gummy in the package including the THC level. These are tested and insured that the THC is consistent with what is listed on the packaging. Most THC gummies come in 100mg packs. 10 gummy’s per pack hence 10mg per gummy. They are tested and if the THC is 9mg then the product throughout the state is pulled as well as their license to produce. So the marijuana business has gotten so complex and complicated, pretty much over my head. But it is not the brownies we use to make and eat.
I don’t know if this helps.

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@lsh4

Hello everyone, I was diagnosed with peripheral small fiber neuropathy in 2019. The cause was excess of Vitamin B6. It is in my feet and lower legs. Of course I quit taking the vitamin supplement that had a high level of B6. I have been able to control the pain with Alpha-Lipoic Acid 1200 mg per day taken in the morning, and Benfotiamine 150 mg per day taken before dinner, and CBD only salve every night on my feet. The tingling, burning is always worst at night and the CBD keeps my feet calm and comfortable most nights. I know for sure this all works because I have gone off for a few days and had the burning sensations return; and after 2 days of the routine I am back to good. I have tried several brands of CBD and also tried a CBD/THC combo. The one that works best for me is CBD only, made by Charlotte's Web, available for mail order online.
Also, I recommend icing the bottom of your feet in the evening before bedtime. Some days I need to do this because the day's activities made my feet hot and burning. Amazing how good the ice feels and how quickly it calms those burning nerves.

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Liked your comments. I have no pain, just the feet tingling
and “kind of” a rough, skin feeling but also only at night. All
of this occurred after TKR.
I’ll try the CBD - was never a believer in it but guess I
should give it a try. I’d prefer to get off the Gabapetin.
Thanks.
Vince

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I'm recovering from peripheral neuropathy caused by the Pfizer vaccine. Until recently, I needed nerve pain control every night to fall asleep. When I finally started using 5% Lidocaine patches, it was life-changing and I avoided the systemic exposure to nerve pain medications.

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@debschults

Congrats on finding ways to mediate your nerve pain! I have found that it's essential to "think outside the box" of traditional medicine and find what works best for you!
I have SFN, as well as Erythromelalgia, in my feet and lower legs. No contributing health issues. I tried gabapentin when first diagnosed but couldn't tolerate the side effects. I've been on pregabalin 150mg 2x a day for several years and it has given me some relief. Also on a supplement called Nerve Renew which is a proprietary blend including B vitamins and Alpha Lipoic Acid.
I can't use compression socks because of the EM. Have used DMSO, and 5% lidocaine cream. And CBD tinctures. Pretty much tried everything I can find to date!
This week my dermatologist is going to use laser therapy on my feet and legs to try and alleviate the painful heat & discomfort from the EM. We'll see how that goes!

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Debshulz, is the laser therapy going to be light or heat or?

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@pacer3702

I'm recovering from peripheral neuropathy caused by the Pfizer vaccine. Until recently, I needed nerve pain control every night to fall asleep. When I finally started using 5% Lidocaine patches, it was life-changing and I avoided the systemic exposure to nerve pain medications.

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@pacer3702 do you mind sharing how you got your diagnosis of PN.

I too am suspected to have nerve damage from phizer and my biopsy and blood work was negative, so despite the neuropathy I was not actually diagnosed with PN.

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I have noticed a high increase in the number of persons suffering with painful neuropathy jn last year including myself. I suspect it is the possible cause of the Covid vaccines?

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@solobeee1

Has anyone tried Hyperbaric Oxygen Therapy for PN?

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I discussed this treatment with a doctor this week.
1. It is not covered with insurance at this time.
2. It takes several 20+ treatments consecutive daily to begin to see results. cost/ treatment 100-165 ea.
3. First step is to determine the cause of your neuropathy so it does not continue. I've had many tests in past, Mayo Clinic in 2019 but no conclusive reason. The tests recommended are expensive urine tests for toxins and heavy metals. GPL tox & Chelation for metals. These would be a starting point for my individual case of Idiopathic PN. I would recommend that anybody interested in such, consult with a medical doctor that has proven success with PN treatment. Most neurologists are administering pharma treatments and supplementation that did not work for me. I hope to see results of testing and will post in future. All the best to you!

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@lorilee13

@pacer3702 do you mind sharing how you got your diagnosis of PN.

I too am suspected to have nerve damage from phizer and my biopsy and blood work was negative, so despite the neuropathy I was not actually diagnosed with PN.

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My neurological symptoms began within 2 weeks of the first Pfizer vaccine. However, my first EMG at 4 months was "essentially normal". My next EMG at 7 months showed sensory and motor nerve damage, as did two subsequent EMGs. My ANA titer was slightly elevated at 7 months and then increased 4-fold over the next 6 weeks. Thus I appear to have autoimmune-mediated nerve damage triggered by the vaccine. My neurologist agrees. Autoimmune reactions take time to fully develop. Most of the vaccine-injured patients begin to improve around 8 months. I'm substantially better now at 19 months. Most vaccine-injured seem to have small-fiber neuropathy that can't be detected by EMG. I benefited considerably by joining the Neuro V Long-Haulers Facebook group as a source of information. I don't know how I could have navigated this illness without that group.

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