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!

@johnbishop

Hello @carrie4803, Welcome to Mayo Clinic Connect. Neuropathy can be the pits, especially when you can't get the answers you need. It also adds to your anxiety and fear of the future. You are not alone in how you feel or with the symptoms you have. The best suggestion I have is to learn as much as you can about your health condition and read the experiences of others who have shared what has helped them here on Connect. I posted my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Did your doctor offer any treatments or therapy for your symptoms?

I'm hoping @rwinney, @artscaping, and other members can share what helps them get through the day.

Jump to this post

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.

REPLY
@rwinney

Hello Carrie @carrie4803 and welcome to Connect. Well, you have really spoke loud and clear for us all to hear and understand what you are going through. I'm so happy you found this site.

Unfortunately, neuropathy comes in all shapes and sizes, does not discrimate against sex or age and has a mind of its own for each individual. Mine began at age 46. My babies were just about grown unlike yours. ☹

I feel your pain and confusion and frustration. It's maddening for sure but, there is hope! Hope lies in the fact that neuropathy will not kill us, but make our lives more challenging.

As far as the challenges…they come both physically and mentally as you have experienced. I needed to learn alot about myself through the challenges and find some (even if extremely hard) good to take away.

Listen, we are here for you and will understand when no-one else may. We are are here for you to learn "tricks of the trade". We are here to comfort and support you on your darkest day.

My wish for you is that you have the skin biopsy to lay your mind to rest. Clarity helps the acceptance process. Please fight hard to be your own advocate. Do your research and learn your disease. Help yourself bc you know your body best.

When you have time away from the high demands of being a Mother, investigate the threads and links here. Others life experiences may offer so much more than the internet.

I'm here, we're here! It was brave of you to reach out to us… a great first step. Keep persevering Carrie, your sweet little one needs a strong mommy and you can do this.

All the best to you and please reach out anytime. Hope today is a pleasant one for you. 🌻

Be well -Rachel

Jump to this post

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

REPLY
@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.

Jump to this post

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

REPLY
@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.

Jump to this post

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

REPLY
@carrie4803

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

Jump to this post

👍🏼👍🏼👍🏼👍🏼👍🏼

REPLY

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?

REPLY
@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?

Jump to this post

It does seem to matter unfortunately I wish you the best

REPLY
@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?

Jump to this post

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.

REPLY
@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.

Jump to this post

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

REPLY
@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

Jump to this post

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 🙂

REPLY
@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 🙂

Jump to this post

REPLY
@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 🙂

Jump to this post

…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.

REPLY
Please sign in or register to post a reply.