1. < Neuropathy

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.

Robin | @birdierobin | Feb 17, 2020
In reply to @carrie4803 "Thanks for being so welcoming. I left the first neurologist I saw because he offered no..." + (show)
@carrie4803

Thanks for being so welcoming. I left the first neurologist I saw because he offered no help besides a prescription for Cymbalta. At the time, I didn’t want to just cover this up, I wanted to try to solve it. I went to another neurologist who ordered MRIs, which showed nothing. She prescribed magnesium, beta blockers, physical therapy and massage. None of that has helped. I’ve been seeing a chiropractor since October and I thought it actually was helping. Immediately after adjustments I usually feel a calming coolness in my feet and the constant buzzing subsides for a little while. That gave me hope. I had one night where I actually fell asleep comfortably. But since then it’s been up and down. Now, very suddenly, my arms and hands are now buzzing and uncomfortable. I was under the impression that this would progress slowly so this is alarming. My hope that the chiropractor was helping is now dashed. This past week has been pretty dark for me.

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Don’t you just hate it when something works and then stops working just when you think you got it whipped I hope your day is a little brighter

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Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 17, 2020
In reply to @carrie4803 "Thanks for being so welcoming. I left the first neurologist I saw because he offered no..." + (show)
@carrie4803

Thanks for being so welcoming. I left the first neurologist I saw because he offered no help besides a prescription for Cymbalta. At the time, I didn’t want to just cover this up, I wanted to try to solve it. I went to another neurologist who ordered MRIs, which showed nothing. She prescribed magnesium, beta blockers, physical therapy and massage. None of that has helped. I’ve been seeing a chiropractor since October and I thought it actually was helping. Immediately after adjustments I usually feel a calming coolness in my feet and the constant buzzing subsides for a little while. That gave me hope. I had one night where I actually fell asleep comfortably. But since then it’s been up and down. Now, very suddenly, my arms and hands are now buzzing and uncomfortable. I was under the impression that this would progress slowly so this is alarming. My hope that the chiropractor was helping is now dashed. This past week has been pretty dark for me.

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Good morning @carrie4803

I've been up, down and all around with my neuropathy. I came in to hoping I could solve it, heal it, fix it. I realized that it may be (or not for some) forever changing. The meds mask but nothing can cure, unfortunately, at this time. There are cases that do settle down based on early detection and treatment so keep hope alive at all times! Positivity and mind set can be huge to offset pain and promote good health. The plan is to strengthen, aid and work with what presents and that possibly can be forever changing as you are experiencing. So much needs to be figured out by learning for ourselves. I've learned the hard way and it brings me peace to be both honest yet optimistic for others. Each day is a new day Carrie. Work very hard on mindfulness.
We got you!!!
Rachel

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Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 17, 2020
In reply to @carrie4803 "Thank you so much for your kind words. It helps to talk to people who understand." + (show)
@carrie4803

Thank you so much for your kind words. It helps to talk to people who understand.

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👍🏼👍🏼👍🏼👍🏼👍🏼

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calliopy2 | @calliopy2 | Feb 17, 2020

I suffer from spinal stenosis with bilateral neuropathy. Loma Linda Hospital in California has a 75% cure rate using Physical therapy with ultrasound, acupressure, and massage to encourage blood flow and neurogenesis. They have completed a 10,000 cohort study and are beginning a second study. There is help, but you have to live near Loma Linda Hospital. I live in the south and have no support. The last MD told me I was getting old, a fact that I am reminded of each time I pass a mirror. Does our zip code reflect our quality of healthcare?

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3 replies
Robin | @birdierobin | Feb 17, 2020
In reply to @calliopy2 "I suffer from spinal stenosis with bilateral neuropathy. Loma Linda Hospital in California has a 75%..." + (show)
@calliopy2

I suffer from spinal stenosis with bilateral neuropathy. Loma Linda Hospital in California has a 75% cure rate using Physical therapy with ultrasound, acupressure, and massage to encourage blood flow and neurogenesis. They have completed a 10,000 cohort study and are beginning a second study. There is help, but you have to live near Loma Linda Hospital. I live in the south and have no support. The last MD told me I was getting old, a fact that I am reminded of each time I pass a mirror. Does our zip code reflect our quality of healthcare?

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It does seem to matter unfortunately I wish you the best

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 17, 2020
In reply to @calliopy2 "I suffer from spinal stenosis with bilateral neuropathy. Loma Linda Hospital in California has a 75%..." + (show)
@calliopy2

I suffer from spinal stenosis with bilateral neuropathy. Loma Linda Hospital in California has a 75% cure rate using Physical therapy with ultrasound, acupressure, and massage to encourage blood flow and neurogenesis. They have completed a 10,000 cohort study and are beginning a second study. There is help, but you have to live near Loma Linda Hospital. I live in the south and have no support. The last MD told me I was getting old, a fact that I am reminded of each time I pass a mirror. Does our zip code reflect our quality of healthcare?

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Hi @calliopy2, Welcome to Connect. You are right, where you live shouldn't reflect our quality of healthcare but unfortunately if you live in an area away from major healthcare facilities that is the case. I looked at their website and see that they have claimed a 75% success rate treating peripheral neuropathy. I see they are still looking for test subjects if you live close or can travel...

Neuropathic Therapy Center seeking participants for diabetic peripheral neuropathy study
-- https://news.llu.edu/research/neuropathic-therapy-center-seeking-participants-for-diabetic-peripheral-neuropathy-study

I'm thinking a lot of this type of treatment depends on the condition of the nerves - pinched, damaged or dead. I'm not sure a dead nerve would be helped with this treatment but then I'm not a medical professional so really do not know. For me, the cost is quite high considered there is no guarantee. It definitely could be a promising treatment if it really has as high of a success rate as they say.

I wonder if we have any members who have tried Intraneural Facilitation (INF) treatment for neuropathy.

@calliopy2 have you heard about Myofascial Release Therapy? It may be another possibility to help with your spinal stenosis with bilateral neuropathy. @jenniferhunter may have some thoughts or suggestions for you.

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 17, 2020
In reply to @johnbishop "Hi @calliopy2, Welcome to Connect. You are right, where you live shouldn't reflect our quality of..." + (show)
@johnbishop

Hi @calliopy2, Welcome to Connect. You are right, where you live shouldn't reflect our quality of healthcare but unfortunately if you live in an area away from major healthcare facilities that is the case. I looked at their website and see that they have claimed a 75% success rate treating peripheral neuropathy. I see they are still looking for test subjects if you live close or can travel...

Neuropathic Therapy Center seeking participants for diabetic peripheral neuropathy study
-- https://news.llu.edu/research/neuropathic-therapy-center-seeking-participants-for-diabetic-peripheral-neuropathy-study

I'm thinking a lot of this type of treatment depends on the condition of the nerves - pinched, damaged or dead. I'm not sure a dead nerve would be helped with this treatment but then I'm not a medical professional so really do not know. For me, the cost is quite high considered there is no guarantee. It definitely could be a promising treatment if it really has as high of a success rate as they say.

I wonder if we have any members who have tried Intraneural Facilitation (INF) treatment for neuropathy.

@calliopy2 have you heard about Myofascial Release Therapy? It may be another possibility to help with your spinal stenosis with bilateral neuropathy. @jenniferhunter may have some thoughts or suggestions for you.

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Hi John
The first thought that comes to mind is how very true this statement is. I feel the same way about living in New York and not having the means to participate in Mayo Clinic's 3 week rehabilitation program. Substantial care and relief should not be a health care privilege. Unfortunately though, that's the way of the world.
Rachel

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 17, 2020
In reply to @rwinney "Hi John The first thought that comes to mind is how very true this statement is...." + (show)
@rwinney

Hi John
The first thought that comes to mind is how very true this statement is. I feel the same way about living in New York and not having the means to participate in Mayo Clinic's 3 week rehabilitation program. Substantial care and relief should not be a health care privilege. Unfortunately though, that's the way of the world.
Rachel

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Hi Rachel - I wish it weren’t so. I sometimes feel like I’ve won the lottery living so close to Mayo Rochester and then my neuropathy brings me back to reality 🙂

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2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 17, 2020
In reply to @johnbishop "Hi Rachel - I wish it weren’t so. I sometimes feel like I’ve won the lottery..." + (show)
@johnbishop

Hi Rachel - I wish it weren’t so. I sometimes feel like I’ve won the lottery living so close to Mayo Rochester and then my neuropathy brings me back to reality 🙂

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☹

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Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 17, 2020
In reply to @johnbishop "Hi Rachel - I wish it weren’t so. I sometimes feel like I’ve won the lottery..." + (show)
@johnbishop

Hi Rachel - I wish it weren’t so. I sometimes feel like I’ve won the lottery living so close to Mayo Rochester and then my neuropathy brings me back to reality 🙂

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...it does make me wonder the success rate of various programs for neuropathy patients who are just too far in??? Rehab, cognitive therapy, nutrition, dismissal of drugs, etc, etc...What a dream it would be to be me again.

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