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?

Hello. I have neuropathy pn from head to toe. 67 yr. old female, myriad of diseases and conditions. Toxic meds. My pn is intractable and unrelenting. At times I am fighting for my sanity and literally crawling out of my skin! Burn, sting, cold. Sit with ice on knees where it can hurt more there but is everywhere. Hands in rolled up heat pad for Raynaud's disease. Tried Gabapentin, super sub-therapeutic dose (100mg. three times daily until 200mg. three times daily due to unwanted side-effects; felt detached, life surreal. Vision problems; double throughout the day and pattern in vision field. Discontinued it to try Lyrica. Worse side-effects so went back to Gabapentin. Less side-effects. Worked fair for pn at first but now, 2 weeks later after resuming, pn worsening daily. Still at subtherapeutic dose but afraid to take more due to side-effects. I'm a medical person/dective. Besides the severe sting/burn/numb, I can itch too but not feel the back scratcher due to numbness. Go figure. Fascinating! Even have same Sxs in girl parts. Have auto-immune Dz; mixed connective tissue. Most organs and 3 glands effected. Have Fibro, it's it's own nightmare. And other painful conditions. Am on morphine but not much. Have tapered down a lot on my own even though I don't have to. Tried authentic CBD. No relief. I'm fascinated by the degree of pn and how I get through it. It's by the grace of God. Faith. But wonder if anyone else literally crawls out of their skin and fights for their sanity due to the intensity of the pn. There are a lot of tears. My Dx is small peripheral neuropathy; everything outside the spinal cord nerves I guess. Anyone out there with my experience? Thank you!

REPLY
@sunnyflower

Hello. I have neuropathy pn from head to toe. 67 yr. old female, myriad of diseases and conditions. Toxic meds. My pn is intractable and unrelenting. At times I am fighting for my sanity and literally crawling out of my skin! Burn, sting, cold. Sit with ice on knees where it can hurt more there but is everywhere. Hands in rolled up heat pad for Raynaud's disease. Tried Gabapentin, super sub-therapeutic dose (100mg. three times daily until 200mg. three times daily due to unwanted side-effects; felt detached, life surreal. Vision problems; double throughout the day and pattern in vision field. Discontinued it to try Lyrica. Worse side-effects so went back to Gabapentin. Less side-effects. Worked fair for pn at first but now, 2 weeks later after resuming, pn worsening daily. Still at subtherapeutic dose but afraid to take more due to side-effects. I'm a medical person/dective. Besides the severe sting/burn/numb, I can itch too but not feel the back scratcher due to numbness. Go figure. Fascinating! Even have same Sxs in girl parts. Have auto-immune Dz; mixed connective tissue. Most organs and 3 glands effected. Have Fibro, it's it's own nightmare. And other painful conditions. Am on morphine but not much. Have tapered down a lot on my own even though I don't have to. Tried authentic CBD. No relief. I'm fascinated by the degree of pn and how I get through it. It's by the grace of God. Faith. But wonder if anyone else literally crawls out of their skin and fights for their sanity due to the intensity of the pn. There are a lot of tears. My Dx is small peripheral neuropathy; everything outside the spinal cord nerves I guess. Anyone out there with my experience? Thank you!

Jump to this post

Good grief, you are really suffering horribly. When I have my small fiber neuropathy attacks the nerves are jangling all over my body as well, from my hair foliciles to the toes of my feet. These attacks are generally at night while I am in bed. Some places on my body does feel like some body is pushing in s giant pin in to my flesh. In the day I don’t get such attacks. I do get such attacks in the groin area as well.
I take Gabipentin, 1200 mg a day. I don’t like this drug’s side-effects, my skin gets blotchy and painful there and really irritates me. I actually cut back from 1800.mg. A day. A company called Life Renew have two supplements I take: Nerve Renew and Nerve Renew Optimizer( 100% alpha Liporic Acid) and that helps me but I am looking for suggestions from others on what they do to get a reduction in the symptoms we suffer. Move forward Sunflower and keep inquiring.

REPLY
@sunnyflower

Hello. I have neuropathy pn from head to toe. 67 yr. old female, myriad of diseases and conditions. Toxic meds. My pn is intractable and unrelenting. At times I am fighting for my sanity and literally crawling out of my skin! Burn, sting, cold. Sit with ice on knees where it can hurt more there but is everywhere. Hands in rolled up heat pad for Raynaud's disease. Tried Gabapentin, super sub-therapeutic dose (100mg. three times daily until 200mg. three times daily due to unwanted side-effects; felt detached, life surreal. Vision problems; double throughout the day and pattern in vision field. Discontinued it to try Lyrica. Worse side-effects so went back to Gabapentin. Less side-effects. Worked fair for pn at first but now, 2 weeks later after resuming, pn worsening daily. Still at subtherapeutic dose but afraid to take more due to side-effects. I'm a medical person/dective. Besides the severe sting/burn/numb, I can itch too but not feel the back scratcher due to numbness. Go figure. Fascinating! Even have same Sxs in girl parts. Have auto-immune Dz; mixed connective tissue. Most organs and 3 glands effected. Have Fibro, it's it's own nightmare. And other painful conditions. Am on morphine but not much. Have tapered down a lot on my own even though I don't have to. Tried authentic CBD. No relief. I'm fascinated by the degree of pn and how I get through it. It's by the grace of God. Faith. But wonder if anyone else literally crawls out of their skin and fights for their sanity due to the intensity of the pn. There are a lot of tears. My Dx is small peripheral neuropathy; everything outside the spinal cord nerves I guess. Anyone out there with my experience? Thank you!

Jump to this post

Hello @sunnyflower, I would like to add my welcome to Connect along with @kcshoemaker and other members. There is another discussion where members have shared their experience with what has helped them that you may be interested in reading and joining in:

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

REPLY

Thanks so much for your reply. I am new at this and haven't done blogs before. "They" say Capsaicin may work but it's a chili pepper thing and may burn superficially when applied. I haven't tried it. I've described this pn as every nerve is innervated/overly stimulated; excited/. Feels like every cell as well! On a small percentage of nerve skin biopsies, about 25% (?) there are some findings. I also have bands of low current electricity that literally feel like they are squeezing my upper right arm and lower left arm. Not intolerable but irritating and distracting. I'm in so many supplements, it's so expensive., Can you please describe in detail how much abnd in what way the Nerve Renew and Nerve Renew Optimizer works for you and, if you know anyone else that benefits from it? With my Carpel Tunnel (Dx'd by testing and already surgerical release on one hand which needs it again), and, the Raynaud's, it's like doubling up on Sxs in hands, fingers, feet and toes. My diabetic husband gets the shooting pains like you. Arthritis strength Tylenol works for him! I've only gotten them rarely. Good talk, thanks so much!

REPLY
@sunnyflower

Hello. I have neuropathy pn from head to toe. 67 yr. old female, myriad of diseases and conditions. Toxic meds. My pn is intractable and unrelenting. At times I am fighting for my sanity and literally crawling out of my skin! Burn, sting, cold. Sit with ice on knees where it can hurt more there but is everywhere. Hands in rolled up heat pad for Raynaud's disease. Tried Gabapentin, super sub-therapeutic dose (100mg. three times daily until 200mg. three times daily due to unwanted side-effects; felt detached, life surreal. Vision problems; double throughout the day and pattern in vision field. Discontinued it to try Lyrica. Worse side-effects so went back to Gabapentin. Less side-effects. Worked fair for pn at first but now, 2 weeks later after resuming, pn worsening daily. Still at subtherapeutic dose but afraid to take more due to side-effects. I'm a medical person/dective. Besides the severe sting/burn/numb, I can itch too but not feel the back scratcher due to numbness. Go figure. Fascinating! Even have same Sxs in girl parts. Have auto-immune Dz; mixed connective tissue. Most organs and 3 glands effected. Have Fibro, it's it's own nightmare. And other painful conditions. Am on morphine but not much. Have tapered down a lot on my own even though I don't have to. Tried authentic CBD. No relief. I'm fascinated by the degree of pn and how I get through it. It's by the grace of God. Faith. But wonder if anyone else literally crawls out of their skin and fights for their sanity due to the intensity of the pn. There are a lot of tears. My Dx is small peripheral neuropathy; everything outside the spinal cord nerves I guess. Anyone out there with my experience? Thank you!

Jump to this post

Good afternoon, @sunnyflower, Welcome to Connect and especially to the discussions about Small Fiber Neuropathy SFN. The link that @johnbishop gave you has important information.

I have read your new member posts and have the feeling that life is quite confusing for you. If I didn't know better I would think that you were dealing with as much as any three people with SFN. Who have you chosen for your clinician…..neurologist, pain management specialist, endocrinologist, a dermatologist?

Do you have a PCP, primary care practitioner to help you make lists of your symptoms and treatments? I think there are a lot of folks out here with at least some of your symptoms?

At this point, i have 3 clinicians who collaborate when necessary. Recently I had a very serious attack of SFN itching so I identify with your statement about itches that don't respond to a back scratcher because the area is numb from SFN. I have another telemedical appointment with my dermatologist on May 14 to try to come to some conclusion about how to avoid the itching or at least treat it quickly. I will be posting the results and the medications.

What on your list of symptoms is the most distressing? Do you think that the seriousness of your symptoms are in part a result of anxiety caused by the COBID-19?

May you be free of suffering and the causes of suffering.
Chris

REPLY
@artscaping

Good afternoon, @sunnyflower, Welcome to Connect and especially to the discussions about Small Fiber Neuropathy SFN. The link that @johnbishop gave you has important information.

I have read your new member posts and have the feeling that life is quite confusing for you. If I didn't know better I would think that you were dealing with as much as any three people with SFN. Who have you chosen for your clinician…..neurologist, pain management specialist, endocrinologist, a dermatologist?

Do you have a PCP, primary care practitioner to help you make lists of your symptoms and treatments? I think there are a lot of folks out here with at least some of your symptoms?

At this point, i have 3 clinicians who collaborate when necessary. Recently I had a very serious attack of SFN itching so I identify with your statement about itches that don't respond to a back scratcher because the area is numb from SFN. I have another telemedical appointment with my dermatologist on May 14 to try to come to some conclusion about how to avoid the itching or at least treat it quickly. I will be posting the results and the medications.

What on your list of symptoms is the most distressing? Do you think that the seriousness of your symptoms are in part a result of anxiety caused by the COBID-19?

May you be free of suffering and the causes of suffering.
Chris

Jump to this post

Hello. Wowzers, I'm usually the one who asks a million questions! Let me try to answer: I don't know that I've received a link from John Bishop? I think I have more than SFN. There's even large fiber neuropathy! I've had a few Neurologists over the years. Not impresses. Not much compassion and I don't know if my current is new in the field but seems to not know a lot. Doesn't have much to say. I have a PCP and many specialists, way too many! Intriguing that one can feel so numb they don't feel the backscratcher superficially, only if pressure and yet skin feels so sunburned it's torture to get touched there! All along the spine. I use 5
% Lidocaine patches. So expensive but work fairl well to make one not want to jump! Have had some minor itching, not a problem so far. Most distressing is constant unrelenting burning/stinging all over. I don't have any anxiety at all. I feel it is b/c I'm a woman of faith and walk very closely w/ our God. He has allotted me an extra measure of faith. I trust Him implicitly and know Him well via the bible. Nothing weird. I don't ever question my situation nor have I ever felt a victim. This is even when thrashing in bed, tears rolling, begging Him to take me now, b/c I know He had every day of my life planned before I took my first breath, Psalm 139:16. I have the peace of God that surpasses all human understanding through Christ, Phillippians 4:7. I'm extremely blessed. I know this life is temporary and no one goes one second before their appointed time. I'm not anxious but am in the highest risk as I'm on 2 immunosuppressant drugs, have autoimmune, heart, lung, kidney, thyroid, parathyroid, pancreas, adrenal, bone etc. diseases. Still, we have our human endurance and life is very difficult. Quality of life so diminished yet acutely aware of my innumerable blessings. I am deeply grateful. I wish it for all! Thank you and let me know if I can help in any way. Many blessings!

REPLY
@sunnyflower

Hello. Wowzers, I'm usually the one who asks a million questions! Let me try to answer: I don't know that I've received a link from John Bishop? I think I have more than SFN. There's even large fiber neuropathy! I've had a few Neurologists over the years. Not impresses. Not much compassion and I don't know if my current is new in the field but seems to not know a lot. Doesn't have much to say. I have a PCP and many specialists, way too many! Intriguing that one can feel so numb they don't feel the backscratcher superficially, only if pressure and yet skin feels so sunburned it's torture to get touched there! All along the spine. I use 5
% Lidocaine patches. So expensive but work fairl well to make one not want to jump! Have had some minor itching, not a problem so far. Most distressing is constant unrelenting burning/stinging all over. I don't have any anxiety at all. I feel it is b/c I'm a woman of faith and walk very closely w/ our God. He has allotted me an extra measure of faith. I trust Him implicitly and know Him well via the bible. Nothing weird. I don't ever question my situation nor have I ever felt a victim. This is even when thrashing in bed, tears rolling, begging Him to take me now, b/c I know He had every day of my life planned before I took my first breath, Psalm 139:16. I have the peace of God that surpasses all human understanding through Christ, Phillippians 4:7. I'm extremely blessed. I know this life is temporary and no one goes one second before their appointed time. I'm not anxious but am in the highest risk as I'm on 2 immunosuppressant drugs, have autoimmune, heart, lung, kidney, thyroid, parathyroid, pancreas, adrenal, bone etc. diseases. Still, we have our human endurance and life is very difficult. Quality of life so diminished yet acutely aware of my innumerable blessings. I am deeply grateful. I wish it for all! Thank you and let me know if I can help in any way. Many blessings!

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Sunnyflower, So nice to hear your testimony of faith in God and Jesus Christ. I am a fellow believer and fellow sufferer of PN – in feet and lower legs. Perhaps we can pray for each other on a regular basis? This life is temporary and suffering for Him is part of our walk of faith. Take care. Terry.

REPLY

@sunnyflower

I would have ended my life years ago if it weren't for the assurance that God hasn't abandoned me. Depression and chronic, intractable pain work hand in hand, and acknowledgement of the mental pain is a big part of dealing with it, whether through prayer or counseling or learning all we can about our illnesses.

You said that you've been to a bunch of specialists. I understand about finding a caring, knowledgeable, competent neurologist. Are you close to a teaching hospital? Here in Oregon, there's OHSU in Portland, about 3 hours away, and I had a few appointments with their neurology staff. One benefit they have is that they can perform tests not available where I live.

Sometimes it takes seeing a number of doctors and specialists to find one that offers good advice. Having people like those here at Mayo Connect, who are experiencing some of the same things that we are, can help us keep things in perspective.

We're glad that you've joined us. I pray every night for the many suffering people here.

Jim

REPLY
@terrydclaar

Sunnyflower, So nice to hear your testimony of faith in God and Jesus Christ. I am a fellow believer and fellow sufferer of PN – in feet and lower legs. Perhaps we can pray for each other on a regular basis? This life is temporary and suffering for Him is part of our walk of faith. Take care. Terry.

Jump to this post

Wonderful to hear that you know our Lord! 2 Corinthians 12:9-10
And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong. There are so many verses about affliction and it being God's will. He is Sovereign and ordains all things. Isaiah 45:7 He is not punitive and uses all things for good for those who love Him and are His. Romans 8:28. I have a pretty significant memory problem so can only commit to trying to remember to pray for people. There are so many people in my life that I pray for, but always feel like I'm not praying enough. I take it seriously. Terry, I am honored that you asked me so I will put forth my best effort. Psalm 34:3 "Oh magnify the Lord with me and let us exalt His name together". In Christ's unfathomable love, Sunnyflower

Liked by sunnyflower

REPLY
@jimhd

@sunnyflower

I would have ended my life years ago if it weren't for the assurance that God hasn't abandoned me. Depression and chronic, intractable pain work hand in hand, and acknowledgement of the mental pain is a big part of dealing with it, whether through prayer or counseling or learning all we can about our illnesses.

You said that you've been to a bunch of specialists. I understand about finding a caring, knowledgeable, competent neurologist. Are you close to a teaching hospital? Here in Oregon, there's OHSU in Portland, about 3 hours away, and I had a few appointments with their neurology staff. One benefit they have is that they can perform tests not available where I live.

Sometimes it takes seeing a number of doctors and specialists to find one that offers good advice. Having people like those here at Mayo Connect, who are experiencing some of the same things that we are, can help us keep things in perspective.

We're glad that you've joined us. I pray every night for the many suffering people here.

Jim

Jump to this post

Thanks Jim. I live in the Seattle area and am a Kaiser patient. Used to be Group Health Cooperative of Puget Sound. My family and myself have wanted me to go to Mayo for years. My daughter used to live in Rochester and has some connections w/ some doctors. Today I did a little research on Benzodiazapines and they do work for nerve pain. I have several types of neuropathy. I do believe I have autonomic by definition. So do you receive your care at Mayo? Any idea the cost to have a work-up w/ Neurology? I have a zillion specialists. I don't know what they'd do with me LOL! I tell my docs that I'm going to be their worst nightmare but not to worry,m they'll grow to love me! I have always been disturbed to my core about any suffereing. I mean I lose sleep. For way too many years to count. I know God has His purpose in everything and can see from beginning to end. I just have to pray, then give it to the Lord or it will eat me up. Many blessings, Sunny

REPLY
@artscaping

Good afternoon, @sunnyflower, Welcome to Connect and especially to the discussions about Small Fiber Neuropathy SFN. The link that @johnbishop gave you has important information.

I have read your new member posts and have the feeling that life is quite confusing for you. If I didn't know better I would think that you were dealing with as much as any three people with SFN. Who have you chosen for your clinician…..neurologist, pain management specialist, endocrinologist, a dermatologist?

Do you have a PCP, primary care practitioner to help you make lists of your symptoms and treatments? I think there are a lot of folks out here with at least some of your symptoms?

At this point, i have 3 clinicians who collaborate when necessary. Recently I had a very serious attack of SFN itching so I identify with your statement about itches that don't respond to a back scratcher because the area is numb from SFN. I have another telemedical appointment with my dermatologist on May 14 to try to come to some conclusion about how to avoid the itching or at least treat it quickly. I will be posting the results and the medications.

What on your list of symptoms is the most distressing? Do you think that the seriousness of your symptoms are in part a result of anxiety caused by the COBID-19?

May you be free of suffering and the causes of suffering.
Chris

Jump to this post

I'm losing track of who I have responded to. Focus, confustion, decision making, fibrofog, memory and more are affected by my toxic meds and all consuming pain. Please forgive. Blessings, Sunnyflower.

REPLY
@jimhd

@sunnyflower

I would have ended my life years ago if it weren't for the assurance that God hasn't abandoned me. Depression and chronic, intractable pain work hand in hand, and acknowledgement of the mental pain is a big part of dealing with it, whether through prayer or counseling or learning all we can about our illnesses.

You said that you've been to a bunch of specialists. I understand about finding a caring, knowledgeable, competent neurologist. Are you close to a teaching hospital? Here in Oregon, there's OHSU in Portland, about 3 hours away, and I had a few appointments with their neurology staff. One benefit they have is that they can perform tests not available where I live.

Sometimes it takes seeing a number of doctors and specialists to find one that offers good advice. Having people like those here at Mayo Connect, who are experiencing some of the same things that we are, can help us keep things in perspective.

We're glad that you've joined us. I pray every night for the many suffering people here.

Jim

Jump to this post

Many times when I've reached my human endurance and am praising and thanking God for my pain, I break and with tears rolling I beg Him to take me now but then I tell Him, here am I Lord, send me. Isaiah 6:8. I know His will is best for me, trust Him in it and that He will get me through. What do people who don't know Him do? Oh my! Blessings, Sunnyflower

REPLY

I am living in the south of the netherlands and had for about two month a strange phenomena 'tingling hands', mentioned to my GP and he asked for a blood test; result was 'vitamin B6 (pyridoxine) too high ' (in the netherlands limits 59 – 179 nmol/l) in my case 308 nmol/l so the obvious reason was the B6.
He asked me if i was using supplements , and nearly forgot the Nutrof , a supplement for a possible Macula preventive treatment – never thought about this containing vitamin B6.
So i stopped immediately , but even after 2 month i still have tingling hands ; what i saw in different discussions that it could take very long to get rid of this nasty problem. Is this normally the case ? Even over 6 month to years ? Is there something can be done to speed the process a bit or to handle it better.
Thanks for any info.
Henk

REPLY
@tys

I am living in the south of the netherlands and had for about two month a strange phenomena 'tingling hands', mentioned to my GP and he asked for a blood test; result was 'vitamin B6 (pyridoxine) too high ' (in the netherlands limits 59 – 179 nmol/l) in my case 308 nmol/l so the obvious reason was the B6.
He asked me if i was using supplements , and nearly forgot the Nutrof , a supplement for a possible Macula preventive treatment – never thought about this containing vitamin B6.
So i stopped immediately , but even after 2 month i still have tingling hands ; what i saw in different discussions that it could take very long to get rid of this nasty problem. Is this normally the case ? Even over 6 month to years ? Is there something can be done to speed the process a bit or to handle it better.
Thanks for any info.
Henk

Jump to this post

Hello Henk @tys, Welcome to Mayo Clinic Connect. You may be interested in a post I shared in another discussion here on Connect — B-6 vitamin danger: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/ where I posted the following information:

Livestrong.com – How to Lower B6
https://www.livestrong.com/article/522968-how-to-lower-b6/

Detox From Dangerous Supplements and B6 Toxicity
http://www.drorestesg.com/blog/detox-from-dangerous-supplements-and-b6-toxicity-

Linus Pauling Institute » Micronutrient Information Center B6
— Food sources of B6: https://lpi.oregonstate.edu/mic/vitamins/vitamin-B6#food-sources
— Fact Sheet for Consumers: https://ods.od.nih.gov/factsheets/VitaminB6-Consumer/

I have no medical training or background but think it probably didn't happen overnight so it will take awhile for the B6 levels to return to normal. Here is another good site for an explanation:

B6 section it explains — too much or too little gives neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

You mentioned it's only been 2 months since you stopped taking the supplement. Are you taking another other supplement like a daily vitamin?

REPLY
@johnbishop

Hello Henk @tys, Welcome to Mayo Clinic Connect. You may be interested in a post I shared in another discussion here on Connect — B-6 vitamin danger: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/ where I posted the following information:

Livestrong.com – How to Lower B6
https://www.livestrong.com/article/522968-how-to-lower-b6/

Detox From Dangerous Supplements and B6 Toxicity
http://www.drorestesg.com/blog/detox-from-dangerous-supplements-and-b6-toxicity-

Linus Pauling Institute » Micronutrient Information Center B6
— Food sources of B6: https://lpi.oregonstate.edu/mic/vitamins/vitamin-B6#food-sources
— Fact Sheet for Consumers: https://ods.od.nih.gov/factsheets/VitaminB6-Consumer/

I have no medical training or background but think it probably didn't happen overnight so it will take awhile for the B6 levels to return to normal. Here is another good site for an explanation:

B6 section it explains — too much or too little gives neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

You mentioned it's only been 2 months since you stopped taking the supplement. Are you taking another other supplement like a daily vitamin?

Jump to this post

Thanks for the quick respons .
Nothing, no supplements , just the 'normal' pills for a 75 year old male 🙂 (statine / blood pressure)
cheers, Henk

REPLY
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