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!

Thank you Somisgirl for sharing. I too was diagnosed almost 1 1/2 yrs. ago with ideopathic SFN, am 72 yrs. old and otherwise in excellent health. I exercise regularly, drink no alcohol, take R-Ala, magnesium citrate, Vit. C, D, omega 3 liquid and collagen peptides plus gabapentin 300 mg. at night. I have the burning/tingling and some numbness in my feet and hands and cramping/tingling in my legs mostly at night. It has only gotten slightly worse during that time. My neuro has suggested I try nortriptylene along with the gaba to help with anxiety/dep. side effects from the gaba but I am reluctant to risk more side effects. I think my game plan is working so far, I consider myself very fortunate and continue to keep my fingers crossed and pray for everyone experiencing pain that something better is coming soon.

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@somisgirl, Thank you for taking the time to let us know of your positive efforts to live a healthy life with your neuropathy in control by wearing compression socks, exercising, and drinking less caffeine among other things. Keep us informed so that we can follow your journey. And have a peaceful evening. Chris

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@helennicola

Thank you Somisgirl for sharing. I too was diagnosed almost 1 1/2 yrs. ago with ideopathic SFN, am 72 yrs. old and otherwise in excellent health. I exercise regularly, drink no alcohol, take R-Ala, magnesium citrate, Vit. C, D, omega 3 liquid and collagen peptides plus gabapentin 300 mg. at night. I have the burning/tingling and some numbness in my feet and hands and cramping/tingling in my legs mostly at night. It has only gotten slightly worse during that time. My neuro has suggested I try nortriptylene along with the gaba to help with anxiety/dep. side effects from the gaba but I am reluctant to risk more side effects. I think my game plan is working so far, I consider myself very fortunate and continue to keep my fingers crossed and pray for everyone experiencing pain that something better is coming soon.

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Good evening @helennicola. Thank you for sharing an update of your status at this time. It appears that you are committed to your program and it works for you.

When my depression got really bad and I was scary “suicidal”, my neurologist sat with me and told me that he wanted me to try nortriptylene to lift the hopeless grey cloud hanging over me. We have partnered on medication choices and so I listened.

The end result…..I started nortryptaline two years ago in concert with the gabapentin just as you mentioned. The impact was immediate and positive. I am a much happier SFN patient and a lot easier to be with. It is great not to spend so much time planning your own demise. Since I no longer spend much time dwelling on my issues, I have time for family and friends and a genuine interest in their lives. May you enjoy happiness and the causes of happiness. Chris

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@artscaping

Good evening @helennicola. Thank you for sharing an update of your status at this time. It appears that you are committed to your program and it works for you.

When my depression got really bad and I was scary “suicidal”, my neurologist sat with me and told me that he wanted me to try nortriptylene to lift the hopeless grey cloud hanging over me. We have partnered on medication choices and so I listened.

The end result…..I started nortryptaline two years ago in concert with the gabapentin just as you mentioned. The impact was immediate and positive. I am a much happier SFN patient and a lot easier to be with. It is great not to spend so much time planning your own demise. Since I no longer spend much time dwelling on my issues, I have time for family and friends and a genuine interest in their lives. May you enjoy happiness and the causes of happiness. Chris

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@artscaping I have been treating my depression, etc., for around 16 years. It took a long time of trial and error until I landed on meds that helped. By the time that happened I was attempting suicide. From the suicidal period it took about five years of therapy to climb up out of the depression hole. Now it's just a passing thought, thanks be to God. I think that pain plays a significant role in the level of depression.

I have a spinal cord stimulator, and this morning I met with a doctor who does dorsal root ganglion stimulator implants. We agreed that the time may come when I'll have run out of options, but she wants to discuss the adjustments to my stimulator with the Abbott tech who does that. I guess that a drg stimulator is kind of the last resort, so we're going to hold off as long as possible. I have an appointment with the pain specialist on Monday, and will talk about all this stuff, and where he thinks I should go.

I'm alive today and stay alive with the help of medications that have stabilized my mental state. (I was going to say mental anguish, but thought mental state was a little more couth.) As you know, nothing stays the same. My level of depression does still fluctuate, but it doesn't get as far down as it did for many years.

Jim

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I think the depression and the pain go hand in hand. It's one thing to have pain from something that will eventually be resolved, quite another to think that there is no end in sight.

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I so agree.

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@artscaping

Good evening @helennicola. Thank you for sharing an update of your status at this time. It appears that you are committed to your program and it works for you.

When my depression got really bad and I was scary “suicidal”, my neurologist sat with me and told me that he wanted me to try nortriptylene to lift the hopeless grey cloud hanging over me. We have partnered on medication choices and so I listened.

The end result…..I started nortryptaline two years ago in concert with the gabapentin just as you mentioned. The impact was immediate and positive. I am a much happier SFN patient and a lot easier to be with. It is great not to spend so much time planning your own demise. Since I no longer spend much time dwelling on my issues, I have time for family and friends and a genuine interest in their lives. May you enjoy happiness and the causes of happiness. Chris

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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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Hi @somisgirl. I have decreased my caffeine intake and agree it does lessen the pain for my neuropathy on my left leg. I am not a diabetic. I do not take any medications. I learn by trial and error to see what works best for me. I am also interested in taking the evening primrose oil. How much do you take in a day? I know you can increase the dose slowly. Glad you are feeling better and keep trying new things. Your efforts are certainly helping.

Liked by sherryw, cannl16

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@avmcbellar

Hi @somisgirl. I have decreased my caffeine intake and agree it does lessen the pain for my neuropathy on my left leg. I am not a diabetic. I do not take any medications. I learn by trial and error to see what works best for me. I am also interested in taking the evening primrose oil. How much do you take in a day? I know you can increase the dose slowly. Glad you are feeling better and keep trying new things. Your efforts are certainly helping.

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1000 mg daily of Evening of Primrose, also taking 600mg ALA 2x day. And the DMSO cream really helps with immediate relief Here is a web site about this…..https://www.salubrainous.com/evening-primrose-oil-for-neuropathy/

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@somisgirl, thank you for your response. I am currently not using any creams. Good to know about DMSO. Thanks again for the information.

Liked by somisgirl

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My diagnosis is peripheral neuropathy. I have numb feet and numbness on one leg up to the knee. But at the same time the feet are so sensitive that I can't wear socks, even though the compression socks might work. Reason is that one small wrinkle feels like I'm on a rock or nail, etc.
Hoping some cure can be found.

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@terryrose

My diagnosis is peripheral neuropathy. I have numb feet and numbness on one leg up to the knee. But at the same time the feet are so sensitive that I can't wear socks, even though the compression socks might work. Reason is that one small wrinkle feels like I'm on a rock or nail, etc.
Hoping some cure can be found.

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Hello @terryrose, Welcome to Connect. I have peripheral neuropathy. My diagnosis is idiopathic small fiber PN and I've had it for over 20 years but only bothered to get a diagnosis a few years ago. I only have numbness with my neuropathy. I'm sorry to hear about the pain with yours. There really is no cure for neuropathy but there are a lot of different treatments and therapies that can help relieve some of the worse symptoms and pain. I'm hoping other members will share their experience with you and you can learn what has helped them. I posted my story earlier on Connect with what I've found that has helped me here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

You might be find the following discussions helpful in your search for something to help with the sensitivity in your feet.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Are you able to share what current treatment you are using?

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@burningfeetinphoenix …I am pretty new to this so I hope I am successful in starting a discussion. I have been researching other alternatives to conventional drugs and was looking for comments on these treatments that seem to have support from the medical community and have had some clinical trials albeit not necessarily double blind studies. Here they are:

Phenytoin Cream
DMSO cream
PEA capsules 600-1200 mg as per studies
PEA Cream – Can now purchase in the US!
Injections of Exosomes (my podiatrist wants to do these injections)
Calmare machine
Ketamine and Amitriptyline NP-H cream

Any comments welcome. Also, it appears most studies on alternatives are done in the Netherlands.

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@burningfeetinphoenix

@burningfeetinphoenix …I am pretty new to this so I hope I am successful in starting a discussion. I have been researching other alternatives to conventional drugs and was looking for comments on these treatments that seem to have support from the medical community and have had some clinical trials albeit not necessarily double blind studies. Here they are:

Phenytoin Cream
DMSO cream
PEA capsules 600-1200 mg as per studies
PEA Cream – Can now purchase in the US!
Injections of Exosomes (my podiatrist wants to do these injections)
Calmare machine
Ketamine and Amitriptyline NP-H cream

Any comments welcome. Also, it appears most studies on alternatives are done in the Netherlands.

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@burningfeetinphoenix, you started a new discussion perfectly. But…I actually moved your message to an already existing discussion on the exact same topic. I did this so we can collect everyone's ideas in the same place. I'll also be interested to see links to any studies that anyone has.

BurningFeet, have you had any success with these alternatives?

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@colleenyoung

@burningfeetinphoenix, you started a new discussion perfectly. But…I actually moved your message to an already existing discussion on the exact same topic. I did this so we can collect everyone's ideas in the same place. I'll also be interested to see links to any studies that anyone has.

BurningFeet, have you had any success with these alternatives?

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I am taking PEA. Orderer PEA cream. Too early to tell…thx!

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