Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@kcshoemaker

My name is Craig,
I have SFN and it is extensive over my whole body, including my scalp and hair follicles. Over time it has played havoc with my skin on my arms, neck and shoulders. The skin is discolored and burns like having a sunburn. It is very uncomfortable.
The brunt of my attacks are at night after I have been in bed and asleep for about 1 hr. Than when I re-position myself in bed the discomfort starts. A hot burning sensation all over my body. Everywhere. It is horrible. Sleep is difficult. The next day I am drained and don’t start to recover till mid morning and know I will face the same thing again when I retire for the night. Is there anyone out experiencing the intensity of such attacks of SFN in their lives? kcshoemaker

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Hi Craig @kcshoemaker, welcome to Connect. I'm very sorry to hear you have SFN and are experiencing such pain and discomfort, especially at night. I too have SFN and have been up and down and all around with it for almost 4 years. I have polyneuropathy so I experience full body as well. The sun burning is awful. I've had various places such as my face, calves, around knees and thighs. Couldn't stand clothing touching these areas. The good news is that with help of Lyrica (Pregabalin) and supplements like Acetyl L Carnitine and Alpha Lipoic Acid, these feelings have eased with only occasional bouts. I developed insomnia from pain that kept me awake or woke me up. I have received help from medical marijuana which settles and calms my body's pain, burning, aching etc…and helps me sleep. You are not alone and I'm glad to help as best I can from my experience and knowledge of the disease. You will find many others here willing to help also. Glad you found us.
Wishing you a restful evening. Be well.
Rachel

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@kcshoemaker

My name is Craig,
I have SFN and it is extensive over my whole body, including my scalp and hair follicles. Over time it has played havoc with my skin on my arms, neck and shoulders. The skin is discolored and burns like having a sunburn. It is very uncomfortable.
The brunt of my attacks are at night after I have been in bed and asleep for about 1 hr. Than when I re-position myself in bed the discomfort starts. A hot burning sensation all over my body. Everywhere. It is horrible. Sleep is difficult. The next day I am drained and don’t start to recover till mid morning and know I will face the same thing again when I retire for the night. Is there anyone out experiencing the intensity of such attacks of SFN in their lives? kcshoemaker

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Hi Craig @kcshoemaker, I would like to add my welcome to Connect along with @rwinney and other members. I'm glad you are here learning more about your condition. Can you share when you were diagnosed with SFN and if your doctor or neurologist started you on any treatment to help with the pain you are experiencing?

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@kcshoemaker

My name is Craig,
I have SFN and it is extensive over my whole body, including my scalp and hair follicles. Over time it has played havoc with my skin on my arms, neck and shoulders. The skin is discolored and burns like having a sunburn. It is very uncomfortable.
The brunt of my attacks are at night after I have been in bed and asleep for about 1 hr. Than when I re-position myself in bed the discomfort starts. A hot burning sensation all over my body. Everywhere. It is horrible. Sleep is difficult. The next day I am drained and don’t start to recover till mid morning and know I will face the same thing again when I retire for the night. Is there anyone out experiencing the intensity of such attacks of SFN in their lives? kcshoemaker

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Hi Craig, I’ve had SFN for a couple of years and just began experiencing the discoloration in my arms-mostly freckles of all sizes and some light pink spots plus a slight burning. This starts after I wake in the morning. I have also noticed that I am losing more hair than usual. I’ve started taking vit. E and biotin to see if that helps. It seems that there are a crazy amount of symptoms associated with this disease and no good explanation for its cause. Are you taking any meds or supplements presently? Helen

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@jimhd

@robtlhughes

I started out with the tingling in my feet and legs, and after a couple of years numbness in my feet, and then the pain started. It gradually has been getting worse and become a burning pain and has spread to include the tops of my feet and most recently has moved to my ankles. It hurts and my ankles feel like I have a band around them, being stretched harder and harder.

Morphine sulfate contin and imipramine are keeping the pain manageable. Three years ago I had a spinal cord stimulator implant that gave me a lot of relief from the pain until a few weeks ago. It's been slowly losing its effectiveness over the past year. I turned the stimulator off a month ago and I haven't felt any change in my pain. So now I'm waiting to get to see the neurosurgeon. So frustrating to have my health care put on hold.

For the burning pain, I put numbing cream on my feet. I have prescription lidocaine cream, but Medicare won't cover it anymore, so I found on Amazon a product called Uber Numb, and instead of the $125 copay for the prescription it's $16 on Amazon. It helps relieve the burning for a couple of hours so I can go to sleep.

Jim

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@jimhd
Glad to hear that the spinal cord stimulator you had implanted worked effectively for a couple of years. Have you talked to your doctor about installing a Neuro stimulator in each leg?

I used the prescription lidocaine cream for a few months until the prescription insurance I had stopped paying for it. Now I use regular hand lotion and that seems to work about as good. I also use cotton socks soaked in cold water. Those work great…until they dry out.

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@johnbishop

Hi Craig @kcshoemaker, I would like to add my welcome to Connect along with @rwinney and other members. I'm glad you are here learning more about your condition. Can you share when you were diagnosed with SFN and if your doctor or neurologist started you on any treatment to help with the pain you are experiencing?

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I was diagnosed about four months ago but had been suffering before that for quite awhile. I took all the tests over a two month period of time to finally got an official statement from my neurologist that I had SFN. So ok Doc you now know what I have so what is my treatment program? Here it is. Take Gabipentin meds and maybe some Liporic Acid pills and adjust your life to live with its consequences. Not a very optimistic prognostication. I have done what he has suggested and just get worse and worse. I am looking forward to what I can learn from this support group to help me.

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@helennicola

Hi Craig, I’ve had SFN for a couple of years and just began experiencing the discoloration in my arms-mostly freckles of all sizes and some light pink spots plus a slight burning. This starts after I wake in the morning. I have also noticed that I am losing more hair than usual. I’ve started taking vit. E and biotin to see if that helps. It seems that there are a crazy amount of symptoms associated with this disease and no good explanation for its cause. Are you taking any meds or supplements presently? Helen

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I take Gabipentin(terrible side effects appeared on skin. A terrible pain rash up and down both arms and on my shoulders. But also blame those skin rashes on my neuropathy attacks that just under the skin and eventually the skin is damaged
I take Nerve Renew and Nerve Renew optimizer
(Which is 100% Liporic Acid) They help some but I still have quite a bit of pain and the symptoms. I want to see what other people are doing to help themselves.

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Stimulator in back

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@kcshoemaker

I was diagnosed about four months ago but had been suffering before that for quite awhile. I took all the tests over a two month period of time to finally got an official statement from my neurologist that I had SFN. So ok Doc you now know what I have so what is my treatment program? Here it is. Take Gabipentin meds and maybe some Liporic Acid pills and adjust your life to live with its consequences. Not a very optimistic prognostication. I have done what he has suggested and just get worse and worse. I am looking forward to what I can learn from this support group to help me.

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@kcshoemaker, The Foundation for Peripheral Neuropathy has some suggestions on lifestyle and supplements that may give you some things to try here: https://www.foundationforpn.org/living-well/lifestyle/nutrition/. Alpha Lipoic Acid is one of the supplements I take also. I shared my story and what helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

It is kind of a learning game and trying to figure out what helps you the best. Here is some more on supplements.
Medical News Today – Which supplements can help with neuropathy? — https://www.medicalnewstoday.com/articles/326917

Here are a couple of other discussions that you might be interested in reading through and following:

Ideas for pain relief from Small Fiber Neuropathy (SFN)
https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

Have you tried the new Protocol 525 product for neuropathy relief?
https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

@rwinney, @jeffrapp, @artscaping and others may also have some suggestions for you.

Liked by rwinney

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@kcshoemaker

I was diagnosed about four months ago but had been suffering before that for quite awhile. I took all the tests over a two month period of time to finally got an official statement from my neurologist that I had SFN. So ok Doc you now know what I have so what is my treatment program? Here it is. Take Gabipentin meds and maybe some Liporic Acid pills and adjust your life to live with its consequences. Not a very optimistic prognostication. I have done what he has suggested and just get worse and worse. I am looking forward to what I can learn from this support group to help me.

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@kcshoemaker Sounds about right. Boy, was I disappointed, just like you, when there was no cure, no real plan, no direction given by my Neuroligist. What a huge let down! What a joke! I did not understand how this was acceptable. Google became my bff and I found Mayo Connect. Been here for almost a year now and its proven invaluable.

This disease really is a bit of rollercoaster and everyone's ride is different. It's trial and error all the way. Nerve meds are the start followed by supplements, vitamins, minerals, topicals, anti-inflammatory diet, stretching/exercise as tolerated and most importantly…an open mind and willingness to learn all you can about SFN and your body.

After exhausting so many options and going through denial, depression, anger, frustration and now desperation…I'm currently exploring my brains interpretation of pain and its power to overcome or at least help manage the rollercoaster ride for the best quality of life, given my circumstances.

I encourage you to pursue, fight for yourself, and never give up or give in to this disease. Keep navigating the multiple neuropathy threads until you find what speaks to you.

Keep the faith.
Rachel

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@kcshoemaker

I was diagnosed about four months ago but had been suffering before that for quite awhile. I took all the tests over a two month period of time to finally got an official statement from my neurologist that I had SFN. So ok Doc you now know what I have so what is my treatment program? Here it is. Take Gabipentin meds and maybe some Liporic Acid pills and adjust your life to live with its consequences. Not a very optimistic prognostication. I have done what he has suggested and just get worse and worse. I am looking forward to what I can learn from this support group to help me.

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@kcshoemaker

My small fiber polyneuropathy (idiopathic) has been in a crescendo for more than 15 years. I tried the meds my pcp prescribed, then went through the neurologist's list, and through the list the pain specialist had to offer. They all either had no effect or they gave a measure of pain relief, but had unacceptable side effects. Because I'm treatment resistant, I was prescribed morphine sulfate contin, which really has helped. In 2015 I had a spinal cord stimulator implant, and WOW. I had forgotten how it felt to be almost pain free. Unfortunately, it's been losing its effectiveness over the past year. Last fall, down at the bottom of his list, my pain specialist had me try imipramine, and I've had some pain relief that has helped mitigate the loss of effectiveness of my scs.

So, as I'm sure you've figured out from reading what many people have said in this forum that you are a long way from having no options and have to learn to live with it. I can't believe a doctor would say that after trying only one medication. There are dozens of methods and medications that are out there. Have you discussed your condition with a good neurologist? Or a pain specialist? Have you tried any cbd or medical marijuana products? If you read Chris' posts, @artscaping , you can learn a lot about those options.

I'm glad that you've joined us here. Every one of us has learned a lot just by sharing in the conversations. Don't let a doctor tell you to learn to live with it. Advocate for yourself. If you have to have a referral to see a specialist, ask for it. My Medicare plan skips that step, so I can make my own appointments with any specialist without going through my pcp. Learn all you can. And, by the way, patience and persistence are great qualities to cultivate.

Jim

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I have progressively bad nerve pain issues which started in my mouth and now are all over my trunk, low back, legs, feet, but with no skin sensitivity, no actual numbness. The sensations are horrid and last 24/7. Normal MRIs, EMGs. And Mayo neurology refuses to see me because it is "just pain". I personally have no respect for the institution. I did need a dermatologist there 8 years ago for the mouth issue and she was the most useless physician I have ever encountered. Accused me of being a drug seeker when she was out of town and one of her colleagues increased the only medicine I was on (I am on none now) which was clonopin .125 mg and he suggested I try .25 mg. So she was so far out of line it was pitiful and Mayo never responded to my complaint.
We pain folks are on our own out here.

Liked by rwinney

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@kathiejac

I have progressively bad nerve pain issues which started in my mouth and now are all over my trunk, low back, legs, feet, but with no skin sensitivity, no actual numbness. The sensations are horrid and last 24/7. Normal MRIs, EMGs. And Mayo neurology refuses to see me because it is "just pain". I personally have no respect for the institution. I did need a dermatologist there 8 years ago for the mouth issue and she was the most useless physician I have ever encountered. Accused me of being a drug seeker when she was out of town and one of her colleagues increased the only medicine I was on (I am on none now) which was clonopin .125 mg and he suggested I try .25 mg. So she was so far out of line it was pitiful and Mayo never responded to my complaint.
We pain folks are on our own out here.

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@kathiejac, I'm sorry to hear about your experience at Mayo Clinic. I encourage you to call the Office of Patient Experience at Mayo Clinic.

Office of Patient Experience
8 a.m. to 5 p.m., Monday – Friday
507-284-4988

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@johnbishop

@kathiejac, I'm sorry to hear about your experience at Mayo Clinic. I encourage you to call the Office of Patient Experience at Mayo Clinic.

Office of Patient Experience
8 a.m. to 5 p.m., Monday – Friday
507-284-4988

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@johnbiship, I had the same experience with Mayo, but I have tried to overlook it. It just shows that nobody is infallible. There must be a secret code with Mayo that allows them to tell the truth. All my internals are swollen, probably from Gelsolin, so I have diagnosis of cancers of prostate, thyroid, testes, adrenals, liver, kidneys, lungs, stomach, esophagus, bowels, tongue, larynx, nasal passages, and everything else because they are swollen. So I now have lost my tonsils, appendix, thyroid, gall bladder, and many teeth because they were swollen or disturbed somehow. Not all by Mayo.

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@kathiejac

I have progressively bad nerve pain issues which started in my mouth and now are all over my trunk, low back, legs, feet, but with no skin sensitivity, no actual numbness. The sensations are horrid and last 24/7. Normal MRIs, EMGs. And Mayo neurology refuses to see me because it is "just pain". I personally have no respect for the institution. I did need a dermatologist there 8 years ago for the mouth issue and she was the most useless physician I have ever encountered. Accused me of being a drug seeker when she was out of town and one of her colleagues increased the only medicine I was on (I am on none now) which was clonopin .125 mg and he suggested I try .25 mg. So she was so far out of line it was pitiful and Mayo never responded to my complaint.
We pain folks are on our own out here.

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@kathiejac After 4 years of chronic pain, I'm trying a new angle. A Connect member referred the book Life After Pain by Dr. Jonathan Kuttner. $10 on Amazon. I'm half way through and very impressed. It's not the end all be all, but another approach to living with pain and finding the best quality of life we possibly can.

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@rwinney

@kathiejac After 4 years of chronic pain, I'm trying a new angle. A Connect member referred the book Life After Pain by Dr. Jonathan Kuttner. $10 on Amazon. I'm half way through and very impressed. It's not the end all be all, but another approach to living with pain and finding the best quality of life we possibly can.

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…It does seem that after all other possibilities and medical help has been exhausted, we look in the mirror and say, "now what, why do I still have this pain". Well, I'm giving it my best try to now hold myself and my knowledge accountable to make some change. Fingers crossed.
Be well,
Rachel

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