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?

@rwinney

Ashley,

As warm as it was outside the other day here in NY, I had no choice for my paining feet but to wear my daughters Ugg boots!

They were the hotness when she so desperately wanted 2 pairs a few years back (age 14).

They are old and beat down but… ya gotta do what ya gotta do. So, I strolled into the hospital wearing Ugg boots for my lidocaine infusion and my nurse said, "Wow, it got that cold out already?!"

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Hi Ashley!! My feet have been so painful lately also. I know what you mean when you find something that works stick with it. Does the lidocaine infusion help you? How often do you have them? Feel better and take care. Lynn

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@ashley302

I'm 27 years old and I've been dealing with SFN for over a year now. Had the biopsy to confirm and tried various antidepressants. Currently I decided to stop taking medication because I don't want to be on anything. I'm so young and don't understand why this has happened as I'm sure many of you feel. I've always been healthy and don't have diabetes or any known cause. It's so frustrating and every day is a battle to be positive. Some days i'm depressed and others I'm mad. At this point i don't know if I should even see anymore doctors because it's the same drill as in they can't do anything or don't know the cause.

For natural remedies what has worked for relief?
Also have your symptoms of SFN gotten worse?

Acupuncture – don't think it's helped at all.
I've been trying drinking celery juice every day, giving that more time.
Eat lots of fruits and veggies through out the day.

Thank you for your support and tips.

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I understand bc I am going through the same thing. The dr's are all puzzled & all I get is the run around. I know how you feel. Best of luck.

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@specialty555

Hi Ashley!! My feet have been so painful lately also. I know what you mean when you find something that works stick with it. Does the lidocaine infusion help you? How often do you have them? Feel better and take care. Lynn

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Hi Lynn
This Is Rachel and yes lidocaine infusions do bring me a percentage of relief.

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@ashley302

Hi, I'm sorry for yours too. I've taken drugs in the past months but it only helped with my mood my really my pain so I didn't see why I should take it. I just cope with it. Some days are worse than others as far as the burning pain. It's definitely uncomfortable and seems that when I don't wear any socks or shoes it feels alleviated. Not sure if that's common with SFN?

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I used to wear socks and wool-lined leather slippers in the house, but over the past 6 months I find myself kicking off both the slippers AND my socks more often than not. I told my Neurologist that our cool ceramic tile floors have started to feel REALLY good against my feet, and he said that is quite common. He told me of one patient who had been known to stand in the snow. Yikes! I hope my feet don't get THAT bad 😮

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@iceblue

I used to wear socks and wool-lined leather slippers in the house, but over the past 6 months I find myself kicking off both the slippers AND my socks more often than not. I told my Neurologist that our cool ceramic tile floors have started to feel REALLY good against my feet, and he said that is quite common. He told me of one patient who had been known to stand in the snow. Yikes! I hope my feet don't get THAT bad 😮

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@iceblue
Some people have been saying they take off shoes.
First thing I do is put them on. At bedtime I take them off. A little while later I try taking them off again. You’d think I’d lean but after nearly 40 years not much hope I’m afraid.
Jake

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@iceblue @jakedduck1

Footwear has become an ongoing struggle for me. Sometimes I buy shoes a size larger than my size 13 feet, so I can put as much insole as I can. The cushion helps when I'm walking. I even have multiple insoles in my slippers, which I put on every time I go into my house.

I have a blanket lifter so that the bedding doesn't touch my feet. Sometimes it feels good to wear loose diabetic socks in bed, but other times socks hurt. I have a pillow that I rest my feet on – the feeling good sometimes doesn't last long, so I move my feet so that the balls of my feet hang off the pillow. It hurts if one foot touches the other, and even the same thing when my knees are touching each other. So I have another pillow that I put under my left knee. I sleep on my right side BTW.

Shoes need to have a wide toe bed. I never walk barefoot because it really hurts my feet. It's interesting that when I stand barefoot on the tile floor in my bathroom, I can feel the coolness under my heels but no sensation in the balls of my feet. I can't wear shoes without socks, including my slippers.

Life is full of surprises and there seems to be no shortage of opportunities to adapt and adjust.

Jim

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@jimhd

@iceblue @jakedduck1

Footwear has become an ongoing struggle for me. Sometimes I buy shoes a size larger than my size 13 feet, so I can put as much insole as I can. The cushion helps when I'm walking. I even have multiple insoles in my slippers, which I put on every time I go into my house.

I have a blanket lifter so that the bedding doesn't touch my feet. Sometimes it feels good to wear loose diabetic socks in bed, but other times socks hurt. I have a pillow that I rest my feet on – the feeling good sometimes doesn't last long, so I move my feet so that the balls of my feet hang off the pillow. It hurts if one foot touches the other, and even the same thing when my knees are touching each other. So I have another pillow that I put under my left knee. I sleep on my right side BTW.

Shoes need to have a wide toe bed. I never walk barefoot because it really hurts my feet. It's interesting that when I stand barefoot on the tile floor in my bathroom, I can feel the coolness under my heels but no sensation in the balls of my feet. I can't wear shoes without socks, including my slippers.

Life is full of surprises and there seems to be no shortage of opportunities to adapt and adjust.

Jim

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You have inspired my day with your positive outlook Jim! Thanks for the pick me up.
Rachel

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@jimhd

@iceblue @jakedduck1

Footwear has become an ongoing struggle for me. Sometimes I buy shoes a size larger than my size 13 feet, so I can put as much insole as I can. The cushion helps when I'm walking. I even have multiple insoles in my slippers, which I put on every time I go into my house.

I have a blanket lifter so that the bedding doesn't touch my feet. Sometimes it feels good to wear loose diabetic socks in bed, but other times socks hurt. I have a pillow that I rest my feet on – the feeling good sometimes doesn't last long, so I move my feet so that the balls of my feet hang off the pillow. It hurts if one foot touches the other, and even the same thing when my knees are touching each other. So I have another pillow that I put under my left knee. I sleep on my right side BTW.

Shoes need to have a wide toe bed. I never walk barefoot because it really hurts my feet. It's interesting that when I stand barefoot on the tile floor in my bathroom, I can feel the coolness under my heels but no sensation in the balls of my feet. I can't wear shoes without socks, including my slippers.

Life is full of surprises and there seems to be no shortage of opportunities to adapt and adjust.

Jim

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@jimhd I agree with @rwinney Your positive outlook is admirable. At our ages we all have our own problems that we have to adapt to and doing it with grace is better than doing it with complaints. I have been complaining a lot recently about my recent discovery that I have osteoporosis but I know I will adapt to that too. I have to, what else can I do?
JK

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@jimhd

@iceblue @jakedduck1

Footwear has become an ongoing struggle for me. Sometimes I buy shoes a size larger than my size 13 feet, so I can put as much insole as I can. The cushion helps when I'm walking. I even have multiple insoles in my slippers, which I put on every time I go into my house.

I have a blanket lifter so that the bedding doesn't touch my feet. Sometimes it feels good to wear loose diabetic socks in bed, but other times socks hurt. I have a pillow that I rest my feet on – the feeling good sometimes doesn't last long, so I move my feet so that the balls of my feet hang off the pillow. It hurts if one foot touches the other, and even the same thing when my knees are touching each other. So I have another pillow that I put under my left knee. I sleep on my right side BTW.

Shoes need to have a wide toe bed. I never walk barefoot because it really hurts my feet. It's interesting that when I stand barefoot on the tile floor in my bathroom, I can feel the coolness under my heels but no sensation in the balls of my feet. I can't wear shoes without socks, including my slippers.

Life is full of surprises and there seems to be no shortage of opportunities to adapt and adjust.

Jim

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@jimhd I read all that you wrote about your feet, shoes, walking without them, etc., and it was like a carbon copy of myself. I cannot even tell you. For what it is worth, and who really knows for you, I order Spenco shoes at qvc.com They have a custom orthotic inside, and are one of the few shoes I can wear. They seem to be the only ones that align my foot straight, and one of the few that don't make me feel like I have cotton or wood stuffed in my shoes. They run true to size, and have a large toe box, so that your toes can move easily. Maybe take a peek? I swear, I cringed reading what you wrote about your feet. One day, I think I will sleeping with shoes on. That is how bad it is to be barefoot. Anyway, good luck. We have to keep our sense of humor, or all is lost!!! Lori Renee

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@johnbishop

@jeffrapp – Thank you for this great post. @ashley302 and other members, I recently was made aware of a website that I think can be helpful for a lot of patients and doctors – https://patientrevolution.org/ which was founded by Dr. Victor Montori. I watched his interview and was really impressed. I wished all doctors had the same philosophy.

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Hi John
Thanks for making us aware of this wonderful idea. I'm not sure how well this will translate in the real world.
In my experience, the medical care system in this country has badly deteriorated over the last 2 or 3 decades. Most of the providers are still highly trained, motivated, and hard working. The problem is, no surprise, money now rules everything.
Back in the day, most physicians were self employed, and were able to do things their way. Now, almost all work for some group, often owned by a hospital system, and have to answer to bosses (hospital administrators or group bureaucrats, insurance companies, various levels of governments, etc) They are forced to see x number of patients per hour lest they lose their jobs.
Many have become angry and dissatisfied.
Throw in a maddening, time consuming disease like peripheral neuropathy, which is often impossible to find a cause for, and even harder to treat in most cases, and you have the makings of a disaster.
I am confident that some day there will be a cure and/or effective treatment. The problem, especially for us older patients, is how long we have to wait.
In the meantime, we have to keep trying different treatments and tricks, and keep up a good attitude.

REPLY
@jeffrapp

Hi John
Thanks for making us aware of this wonderful idea. I'm not sure how well this will translate in the real world.
In my experience, the medical care system in this country has badly deteriorated over the last 2 or 3 decades. Most of the providers are still highly trained, motivated, and hard working. The problem is, no surprise, money now rules everything.
Back in the day, most physicians were self employed, and were able to do things their way. Now, almost all work for some group, often owned by a hospital system, and have to answer to bosses (hospital administrators or group bureaucrats, insurance companies, various levels of governments, etc) They are forced to see x number of patients per hour lest they lose their jobs.
Many have become angry and dissatisfied.
Throw in a maddening, time consuming disease like peripheral neuropathy, which is often impossible to find a cause for, and even harder to treat in most cases, and you have the makings of a disaster.
I am confident that some day there will be a cure and/or effective treatment. The problem, especially for us older patients, is how long we have to wait.
In the meantime, we have to keep trying different treatments and tricks, and keep up a good attitude.

Jump to this post

Reading this opens the door for me to update everyone on the meeting I had yesterday with my Neurologist, Dr. Argoff.

He helped write the SFN book with other (Mayo) docs which I've posted about in the past.

He remains firm but fair with me over my long list of questions. I will never stop advocating for myself so I try to bring intelligent, productive questions but, sometimes they are desperate questions as well. Here it goes…

1. He reitterated….
there is no stage or progression clarification at this time and he would not even try to provide a guide line of comparison or progression between my case and another's based on his personal observations.

2. He believes in lidocaine infusions for pain relief. Each person may have a different experience. I dropped my infusion for one week to test my body and progression after over 3 months of receiving and it was not pretty. I'll continue, now that I have solid evidence, and go to my max highest dose next week. 20-40% relieve at this time.

3. He will only recommend Acetyl L Carnitine, Alpha Lipoic Acid and B12. He would not weigh in on or advise of any other supplements or vitamins as nothing is medically proven.

4. Same goes for topicals…has heard of PEA but offers no advice. No proof.

5. Same goes for cbd/thc. No medical proof or long term studies for neuropathy.

5. His next plan of action, if lidocaine infusions fail me, is IVIG. He claims Medicare does not cover IVIG so I don't qualify. Must look into parts XYZ…haha, don't understand that all yet.

6. Next would be plasmapherisis, blood clense. Covered by Medicare but, not without a fight maybe.

7. He believes in Ketamine powder more so than infusions but did not elaborate and I did not pursue (at this time).

8. Believes opiods may cause a viscous cycle of added pain and has agreed to help me get off them using the new drug Lucemyra. I'm agreeable as I've never wanted them in my body but fear no back up of immediate pain relief (not including cbd/thc, still weighing). If I choose this path…may possibly begin Low Dose Naltrexone to try for pain relief which he agrees with.

9. He says only by getting off opiods can we fully establish my true sources of pain. May legit be all from SFN but must rule out opiods contributing.

In conclusion, you all may know this stuff or not but, what we all DO know is…

Small Fiber Neuropathy continues to challenge the medical community around the world, it's patients, friends/families of patients and support groups. When Mayo declines assisting, you know there isn't much more to do, except count on each other and try our best to be patient with research and potential progress.

We can keep hoping that progress is made in each of our life times.

Rachel

REPLY
@rwinney

Reading this opens the door for me to update everyone on the meeting I had yesterday with my Neurologist, Dr. Argoff.

He helped write the SFN book with other (Mayo) docs which I've posted about in the past.

He remains firm but fair with me over my long list of questions. I will never stop advocating for myself so I try to bring intelligent, productive questions but, sometimes they are desperate questions as well. Here it goes…

1. He reitterated….
there is no stage or progression clarification at this time and he would not even try to provide a guide line of comparison or progression between my case and another's based on his personal observations.

2. He believes in lidocaine infusions for pain relief. Each person may have a different experience. I dropped my infusion for one week to test my body and progression after over 3 months of receiving and it was not pretty. I'll continue, now that I have solid evidence, and go to my max highest dose next week. 20-40% relieve at this time.

3. He will only recommend Acetyl L Carnitine, Alpha Lipoic Acid and B12. He would not weigh in on or advise of any other supplements or vitamins as nothing is medically proven.

4. Same goes for topicals…has heard of PEA but offers no advice. No proof.

5. Same goes for cbd/thc. No medical proof or long term studies for neuropathy.

5. His next plan of action, if lidocaine infusions fail me, is IVIG. He claims Medicare does not cover IVIG so I don't qualify. Must look into parts XYZ…haha, don't understand that all yet.

6. Next would be plasmapherisis, blood clense. Covered by Medicare but, not without a fight maybe.

7. He believes in Ketamine powder more so than infusions but did not elaborate and I did not pursue (at this time).

8. Believes opiods may cause a viscous cycle of added pain and has agreed to help me get off them using the new drug Lucemyra. I'm agreeable as I've never wanted them in my body but fear no back up of immediate pain relief (not including cbd/thc, still weighing). If I choose this path…may possibly begin Low Dose Naltrexone to try for pain relief which he agrees with.

9. He says only by getting off opiods can we fully establish my true sources of pain. May legit be all from SFN but must rule out opiods contributing.

In conclusion, you all may know this stuff or not but, what we all DO know is…

Small Fiber Neuropathy continues to challenge the medical community around the world, it's patients, friends/families of patients and support groups. When Mayo declines assisting, you know there isn't much more to do, except count on each other and try our best to be patient with research and potential progress.

We can keep hoping that progress is made in each of our life times.

Rachel

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@rwinney
Just wanted to say that in my case I disagree with your doctor about opioids. When I was taking Fentanyl it did more good than anything else I tried.
Jake

REPLY
@rwinney

Reading this opens the door for me to update everyone on the meeting I had yesterday with my Neurologist, Dr. Argoff.

He helped write the SFN book with other (Mayo) docs which I've posted about in the past.

He remains firm but fair with me over my long list of questions. I will never stop advocating for myself so I try to bring intelligent, productive questions but, sometimes they are desperate questions as well. Here it goes…

1. He reitterated….
there is no stage or progression clarification at this time and he would not even try to provide a guide line of comparison or progression between my case and another's based on his personal observations.

2. He believes in lidocaine infusions for pain relief. Each person may have a different experience. I dropped my infusion for one week to test my body and progression after over 3 months of receiving and it was not pretty. I'll continue, now that I have solid evidence, and go to my max highest dose next week. 20-40% relieve at this time.

3. He will only recommend Acetyl L Carnitine, Alpha Lipoic Acid and B12. He would not weigh in on or advise of any other supplements or vitamins as nothing is medically proven.

4. Same goes for topicals…has heard of PEA but offers no advice. No proof.

5. Same goes for cbd/thc. No medical proof or long term studies for neuropathy.

5. His next plan of action, if lidocaine infusions fail me, is IVIG. He claims Medicare does not cover IVIG so I don't qualify. Must look into parts XYZ…haha, don't understand that all yet.

6. Next would be plasmapherisis, blood clense. Covered by Medicare but, not without a fight maybe.

7. He believes in Ketamine powder more so than infusions but did not elaborate and I did not pursue (at this time).

8. Believes opiods may cause a viscous cycle of added pain and has agreed to help me get off them using the new drug Lucemyra. I'm agreeable as I've never wanted them in my body but fear no back up of immediate pain relief (not including cbd/thc, still weighing). If I choose this path…may possibly begin Low Dose Naltrexone to try for pain relief which he agrees with.

9. He says only by getting off opiods can we fully establish my true sources of pain. May legit be all from SFN but must rule out opiods contributing.

In conclusion, you all may know this stuff or not but, what we all DO know is…

Small Fiber Neuropathy continues to challenge the medical community around the world, it's patients, friends/families of patients and support groups. When Mayo declines assisting, you know there isn't much more to do, except count on each other and try our best to be patient with research and potential progress.

We can keep hoping that progress is made in each of our life times.

Rachel

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@rwinney Thank you very much for this information Rachel. Are lidocaine infusions covered by Medicare? It’s good to know that your Dr endorses taking acetyl L Carnitine as I have seen conflicting opinions about its use. I actually bought a bottle but haven’t started taking it yet. There are some days when I feel very down but, for some reason, today I feel hopeful that there is a way forward to controlling the discomfort. I think one of the reasons for my hopeful attitude today is the support and sharing I see among members of this group, so thank you all.

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Hi my name is andrea i am in the process of finding a diagnosis, i have high kappa light chain (urine) and so rheumatologist referred me to hematologist, kappa light chain disease is what I was told I have so far until apt with hematologist. Kappa light chain is 48.9 lambda 3.41 ratio is 14.34 just want to see what other people think, and what road I may be heading in
I am a momma of 3+1 bonus =4 girls
29yrs old
Father had cancer 3× non hodgkins, multiple myeloma, and plasymotoma
And information helps thank you tons!

Liked by Leonard, monce1189

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@jakedduck1

@rwinney
Just wanted to say that in my case I disagree with your doctor about opioids. When I was taking Fentanyl it did more good than anything else I tried.
Jake

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I totally understand Jake and this is a topic to be debated. I've grown up with a mother who has taken opiods for 41 years due to a motorcycle accident. Without them, she would have not had any quality of life since 28 years old. Each scenario is definitely different and each person deserves to choose their battles.

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