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!

@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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Good evening, @calliopy2, Welcome to Connect. I am sorry you find yourself ineligible for service at Loma Linda because of your location and level of financial support. Having lived near there for 20 years, I understand those frustrations.

Are you aware that clinicians and other providers at Mayo Clinic have a network that enables staff in another hospital to collaborate with teams at Mayo Clinic? Would that help your situation? What services do you need and/or what health situation are you facing right now?

Do you work with providers at a Pain Clinic?

I sort of chuckled at your age validation. I loved my mom and she was a beautiful woman. However, she aged like everyone else. Now I see more of her when I catch a reflection of myself today at 77.

When you mention that you have no support, what does that mean? What are your needs? Connect is a wonderful community with a mission of improving the quality of life of patients, caregivers, and families. We do need to know a bit more about the reason for your post.

Be safe and protected.
Chris

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@rwinney

…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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Wouldn’t that be nice! the woman I was is gone. Its unfortunate life as we knew it is gone!

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@birdierobin

Wouldn’t that be nice! the woman I was is gone. Its unfortunate life as we knew it is gone!

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My husband, and 45 year old friend, has COPD and after 4 months of marriage said ‘its looks like I will have to take care of you, instead of you taking care of me’, and he left within 36 hours. Tell me my marriage is over on Saturday morning my Sunday he was moving out and left and never seen since. And with these disorders stress is our enemy. So climbing up out of something like that is emotionally devastating along with the life changing on us as we knew it.

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@birdierobin

Wouldn’t that be nice! the woman I was is gone. Its unfortunate life as we knew it is gone!

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Yes, it is @birdierobin. I try to remain focused on finding positive that has come with my conditions and have done so. However, the honest answer is one that I will never truly accept or be happy about. How can I, when it has greatly impacted my ability to be among the productive, functioning population. Eyes, chronic migraine, progressive SFPN…yup, here I go again feeling sorry for myself. Damn straight. Let me get this off my chest (sorry Robin that you are the recipient).

I had deep concern over traveling 1 hour 40 minutes in the car to my daughter's college for a (basketball) game. I don't travel well and it has progressively worsened. I understand that any joy or involvement comes with a price to pay.. I prepare for the offset of my journey…pain, discomfort, misery yet still trudge on.

I prepare not only mentally but physically for each part of my body, each situation that will occur. I travel with pain killers, mid-day supplements, nausea meds, migraine abortive packets, heat, ice, eye shields to black out light, ear plugs to defy noise, pillows for lower lumbar, pillow for under my butt to ease the pressure from all seats, baseball hat and sunglasses for light diffusion, loose foot wear and pants, layered clothing for temperature regulation.

Traveling is not conducive to any part of me but, I need to be among the living, yes? I can not sit in my bubble wrapped cocoon the rest of my life. I can not miss my daughter's college events. I can not send my husband off without me as even when I am with him, I'm barely present and a shell of what I used to be. None of this of course being fair to my husband of almost 30 years. Empty nesters and I have nothing to offer, nothing to give. It's an incredibly sad situation and reality for me, for us. Difficult when you bare the burden of knowing how severely you've changed someone else's life.

As I continue to work on mindfulness, I am aimlessly tested. I've come to recognize that my life, for the past 6 years, comes with strings attached. I have slowly declined since age 43 when first diagnosed with corneal disease and have needed to learn new ways of living to succeed and be present. Migraines and neuropathy have completely sealed the deal.

I'm a fighter and always will be but, if this ain't some exhausting shit…I don't know what is. I'm trying to come to terms with the rules of this game. I know basketball so, will break it down like this…

There is an offense and a defense. Wnning shouldn't be everything but, let's face it, it's a pretty huge part. There are time outs and quarters or halves. There is a coaching staff, players and fans. There are teammates and a game plan.

When life slam dunks you…you lean on your teammates, your coaches. You hope the athletic trainers will solve your physical set backs and get you back in the game. You get inspired by the fans in the stands supporting and cheering you on. You just want to win the game for them, for yourself…but, then you face the harsh reality of a loss. Parents of players (including myself) pick their kids up mentally and convey…winning isn't everything, there's always next game. 💪🏼

Here is a good place to end this self pity party…by thanking you all for being my
teammates and allowing me to lean on you. Never did I know such a team existed until I lost the game.

Be well today. I'm going to give it my best try.
Rachel

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@birdierobin

My husband, and 45 year old friend, has COPD and after 4 months of marriage said ‘its looks like I will have to take care of you, instead of you taking care of me’, and he left within 36 hours. Tell me my marriage is over on Saturday morning my Sunday he was moving out and left and never seen since. And with these disorders stress is our enemy. So climbing up out of something like that is emotionally devastating along with the life changing on us as we knew it.

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Sighhhh…I am so, so sorry. 💕

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@rwinney

Yes, it is @birdierobin. I try to remain focused on finding positive that has come with my conditions and have done so. However, the honest answer is one that I will never truly accept or be happy about. How can I, when it has greatly impacted my ability to be among the productive, functioning population. Eyes, chronic migraine, progressive SFPN…yup, here I go again feeling sorry for myself. Damn straight. Let me get this off my chest (sorry Robin that you are the recipient).

I had deep concern over traveling 1 hour 40 minutes in the car to my daughter's college for a (basketball) game. I don't travel well and it has progressively worsened. I understand that any joy or involvement comes with a price to pay.. I prepare for the offset of my journey…pain, discomfort, misery yet still trudge on.

I prepare not only mentally but physically for each part of my body, each situation that will occur. I travel with pain killers, mid-day supplements, nausea meds, migraine abortive packets, heat, ice, eye shields to black out light, ear plugs to defy noise, pillows for lower lumbar, pillow for under my butt to ease the pressure from all seats, baseball hat and sunglasses for light diffusion, loose foot wear and pants, layered clothing for temperature regulation.

Traveling is not conducive to any part of me but, I need to be among the living, yes? I can not sit in my bubble wrapped cocoon the rest of my life. I can not miss my daughter's college events. I can not send my husband off without me as even when I am with him, I'm barely present and a shell of what I used to be. None of this of course being fair to my husband of almost 30 years. Empty nesters and I have nothing to offer, nothing to give. It's an incredibly sad situation and reality for me, for us. Difficult when you bare the burden of knowing how severely you've changed someone else's life.

As I continue to work on mindfulness, I am aimlessly tested. I've come to recognize that my life, for the past 6 years, comes with strings attached. I have slowly declined since age 43 when first diagnosed with corneal disease and have needed to learn new ways of living to succeed and be present. Migraines and neuropathy have completely sealed the deal.

I'm a fighter and always will be but, if this ain't some exhausting shit…I don't know what is. I'm trying to come to terms with the rules of this game. I know basketball so, will break it down like this…

There is an offense and a defense. Wnning shouldn't be everything but, let's face it, it's a pretty huge part. There are time outs and quarters or halves. There is a coaching staff, players and fans. There are teammates and a game plan.

When life slam dunks you…you lean on your teammates, your coaches. You hope the athletic trainers will solve your physical set backs and get you back in the game. You get inspired by the fans in the stands supporting and cheering you on. You just want to win the game for them, for yourself…but, then you face the harsh reality of a loss. Parents of players (including myself) pick their kids up mentally and convey…winning isn't everything, there's always next game. 💪🏼

Here is a good place to end this self pity party…by thanking you all for being my
teammates and allowing me to lean on you. Never did I know such a team existed until I lost the game.

Be well today. I'm going to give it my best try.
Rachel

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No you can’t just sit there and put 1 foot in front of the other and just keep on Goin I’m sorry it’s so painful for you to travel it’s not the best in the world for me but it’s nothing like you traveling from Virginia to mayo clinic in Rochester Minnesota however it’s overwhelming but I do have a friend who has volunteered to drive me up there and drop me off I don’t know how my get back yet. But for now I am available for the blessing of getting there

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@rwinney

Sighhhh…I am so, so sorry. 💕

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I refuse to let it get me all the way down!

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@rwinney

Sighhhh…I am so, so sorry. 💕

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@rwinney No we all should vent at times here where we all understand how each feels with pain and whatever else we have to put up with so No vent when you need to we are all are best listeners unlike family ,mine in particular says oh there she goes again,I say wait and walk in my shoes for one day then let's see how you feel. Upward and onward Rachel Be kind to yourself. Linda

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@birdierobin

My husband, and 45 year old friend, has COPD and after 4 months of marriage said ‘its looks like I will have to take care of you, instead of you taking care of me’, and he left within 36 hours. Tell me my marriage is over on Saturday morning my Sunday he was moving out and left and never seen since. And with these disorders stress is our enemy. So climbing up out of something like that is emotionally devastating along with the life changing on us as we knew it.

Jump to this post

@birdierobin I'm so sorry that your husband couldn't be there for you now after all your years of caring for him .You have come out of it strong we women are since we all go through so much in life.We are nurturers but know how to take care of ourselves.

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@rwinney

Yes, it is @birdierobin. I try to remain focused on finding positive that has come with my conditions and have done so. However, the honest answer is one that I will never truly accept or be happy about. How can I, when it has greatly impacted my ability to be among the productive, functioning population. Eyes, chronic migraine, progressive SFPN…yup, here I go again feeling sorry for myself. Damn straight. Let me get this off my chest (sorry Robin that you are the recipient).

I had deep concern over traveling 1 hour 40 minutes in the car to my daughter's college for a (basketball) game. I don't travel well and it has progressively worsened. I understand that any joy or involvement comes with a price to pay.. I prepare for the offset of my journey…pain, discomfort, misery yet still trudge on.

I prepare not only mentally but physically for each part of my body, each situation that will occur. I travel with pain killers, mid-day supplements, nausea meds, migraine abortive packets, heat, ice, eye shields to black out light, ear plugs to defy noise, pillows for lower lumbar, pillow for under my butt to ease the pressure from all seats, baseball hat and sunglasses for light diffusion, loose foot wear and pants, layered clothing for temperature regulation.

Traveling is not conducive to any part of me but, I need to be among the living, yes? I can not sit in my bubble wrapped cocoon the rest of my life. I can not miss my daughter's college events. I can not send my husband off without me as even when I am with him, I'm barely present and a shell of what I used to be. None of this of course being fair to my husband of almost 30 years. Empty nesters and I have nothing to offer, nothing to give. It's an incredibly sad situation and reality for me, for us. Difficult when you bare the burden of knowing how severely you've changed someone else's life.

As I continue to work on mindfulness, I am aimlessly tested. I've come to recognize that my life, for the past 6 years, comes with strings attached. I have slowly declined since age 43 when first diagnosed with corneal disease and have needed to learn new ways of living to succeed and be present. Migraines and neuropathy have completely sealed the deal.

I'm a fighter and always will be but, if this ain't some exhausting shit…I don't know what is. I'm trying to come to terms with the rules of this game. I know basketball so, will break it down like this…

There is an offense and a defense. Wnning shouldn't be everything but, let's face it, it's a pretty huge part. There are time outs and quarters or halves. There is a coaching staff, players and fans. There are teammates and a game plan.

When life slam dunks you…you lean on your teammates, your coaches. You hope the athletic trainers will solve your physical set backs and get you back in the game. You get inspired by the fans in the stands supporting and cheering you on. You just want to win the game for them, for yourself…but, then you face the harsh reality of a loss. Parents of players (including myself) pick their kids up mentally and convey…winning isn't everything, there's always next game. 💪🏼

Here is a good place to end this self pity party…by thanking you all for being my
teammates and allowing me to lean on you. Never did I know such a team existed until I lost the game.

Be well today. I'm going to give it my best try.
Rachel

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@rwinney You are inspiring, Rachel. You are the best. Thanks for writing all that you do….. Lori R.

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@lorirenee1

@rwinney You are inspiring, Rachel. You are the best. Thanks for writing all that you do….. Lori R.

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Thanks Lori
Can't help myself sometimes. Then after, I may think…what the heck did you write all that for?!? 😉

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Robin, that's so sad … my heart goes out to you. Do emotions like heartbreak, anxiety, fear, resentment, etc. make neuropathy pain flare up worse? Peggy

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