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?

@jesfactsmon

Hi @njc and welcome. My wife has peripheral neuropathy (PN) and I do my best to look after her even as she does her best to keep from doing anything particularly dumb, which I appreciate. She has never been officially diagnosed, but her PN started right after chemotherapy for breast cancer in 2014. She is 73 and, like a LOT of people here, has many different health issues, the PN being not one of the less significant ones, however, and it seems many of her issues things tie in to nerves (like fibromialgia for example). You sound like someone with some seriously bad, pain inducing problems. For that you have my sincere condolences. That being said, your ailments do sound interesting. The fact that you suffer from pain mostly on one side of your body sounds unusual, though probably tied to hurting the sciatic on your right side I guess.

Anyway, I try to keep abreast of all of the neuropathy discussions here on Connect in hopes of discovering, on my wife's behalf, new ideas and possible aids to dealing with this insidious nerve disease. The latest thing which I have latched onto here is something called "low dose naltrexone" or LDN. Its a drug therapy which may improve the immune system, fight inflammation (I almost wrote" inflation" but it ain't likely to help that) and has very mild side effects. If you go to the main neuropathy page you can scroll down the list of discussions and you can't miss it. Here is a link to the that main page, in case you aren't yet familiar with moving around on Connect yet (it took me about a month):
https://connect.mayoclinic.org/group/neuropathy/
My best to you and hope to hear more from you in coming weeks/months.

Best, Hank

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Thanks for your reply, Hank. I am currently on low dose CellCept for Lupus. It is an immune suppressant. With autoimmune type patients, it is my understanding that immune building or strengthening products are counterproductive because it strengthens autoantibodies as well. I am hypersensitive to medications. Therefore, seeing my negative side effect medication list, my neurologist indicated the best thing would be to increase the CellCept if the SFN exacerbated. She supposes that the autoimmune and diabetes issues are behind the SFN. The only pain medication I can take is Tylenol and I do that rarely. I have found a topical OTC homeopathic cream that helps with burning, stinging, tingling and itching, but nothing helps the numbness. I have been diagnosed with fibromyalgia as well. Perhaps the most demanding issue at this point in my life is managing my T1 diabetes. It is constant. Yes, I am being challenged on how to use this site. But, hopefully I’ll catch on soon. 🙂

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@njc

Thanks for your reply, Hank. I am currently on low dose CellCept for Lupus. It is an immune suppressant. With autoimmune type patients, it is my understanding that immune building or strengthening products are counterproductive because it strengthens autoantibodies as well. I am hypersensitive to medications. Therefore, seeing my negative side effect medication list, my neurologist indicated the best thing would be to increase the CellCept if the SFN exacerbated. She supposes that the autoimmune and diabetes issues are behind the SFN. The only pain medication I can take is Tylenol and I do that rarely. I have found a topical OTC homeopathic cream that helps with burning, stinging, tingling and itching, but nothing helps the numbness. I have been diagnosed with fibromyalgia as well. Perhaps the most demanding issue at this point in my life is managing my T1 diabetes. It is constant. Yes, I am being challenged on how to use this site. But, hopefully I’ll catch on soon. 🙂

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Wow, @njc I'm pretty impressed with the manner in which you are confronting these health challenges. Many people that have posted on Connect have a similar complexity to their personal set of issues, so you are not alone, even if each person's particular set of issues is unique to some or a large degree. Dealing with the type of diet requirements you have and the management of same sounds like a full time job. Taking it all in I must say I have to admire you for being able to handle it all. To have stabilized your overall situation with a workable plan considering all of your issues seems remarkable. When you found you were losing so much weight and it became apparent you would require a feeding tube if you lost more you gained back ten pounds. That is amazing considering your dietary restrictions. How did you do it? I am really glad you have chosen to participate on Connect. I know you will have a lot to discuss with other people here, which will hopefully be of benefit to you as well as them. Best, Hank

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@njc

Thanks for your reply, Hank. I am currently on low dose CellCept for Lupus. It is an immune suppressant. With autoimmune type patients, it is my understanding that immune building or strengthening products are counterproductive because it strengthens autoantibodies as well. I am hypersensitive to medications. Therefore, seeing my negative side effect medication list, my neurologist indicated the best thing would be to increase the CellCept if the SFN exacerbated. She supposes that the autoimmune and diabetes issues are behind the SFN. The only pain medication I can take is Tylenol and I do that rarely. I have found a topical OTC homeopathic cream that helps with burning, stinging, tingling and itching, but nothing helps the numbness. I have been diagnosed with fibromyalgia as well. Perhaps the most demanding issue at this point in my life is managing my T1 diabetes. It is constant. Yes, I am being challenged on how to use this site. But, hopefully I’ll catch on soon. 🙂

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By the way, I am not sure if LDN acts on your immune system in such a way as to make autoimmune issues worse. If you have time/interest you might take a look at this article:
https://www.amymyersmd.com/article/low-dose-naltrexone/
They say in several things I have read that LDN helps to "modulate" the immune system, whatever that means. In any case it supposedly has the effect, at least for some people, of boosting the endogenous opioids, or endorphins, which actually can help to fight autoimmunity supposedly. Hank

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@njc

For a number of years I have had diabetic neuropathy with burning and stinging in my toes and glove-like numbness below the knees. I have to put a pillow between my lower legs at night because of pain when one leg puts pressure on another. I developed gastroparesis, swallowing difficulties and peristaltic irregularities in the esophagus. About eight months ago, after an incident that aggravated my right sciatic nerve, which is damaged from former disc extrusion and back surgery and which is also affected by subsequent arachnoiditis, I had an acute response of stinging, burning and numbness which extended from head to foot on the right side of my body. The stinging and burning have considerably reduced, but the numbness continues along with the itching which seems to precede the onset of new areas of numbness. The itching and numbness has also migrated to areas of the left side. I was diagnosed with SFN 5 months ago, but no skin test was done. In the past I have been diagnosed with lupus and with Sjogren’s. I have been a Type 1 diabetic for 13 years. I have had nerve conduction and EMG studies
done with indication of lower and possible upper motor neuron issues.
I had never heard of SFN before and not aware of anyone who has similar symptoms. So, I decided to check out this site. It is the first time I have had the courage to “step into“ a support group.
Thank you for your welcome.
PS: I am 80 years old. I have some concerns about what SFN might do to my “old” brain. 🤔

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Hi njc, I am 76 and have been diagnosed With SFN at least 10 years ago by two biopsies. I don't have the burning in my feet any more but the numbness continues and has gone up almost to my knees. I also have CRPS in both feet so it's hard for me to distinguish what is causing the pain. My feet are contracting much more lately. The numbness in my hands has me dropping things without realizing I have let go. It gives me exercise as I have to bend down and pick it up. That's a good thing. LOL. I am not aware of any brain involvement. I also have a spinal cord stimulator implanted due to disc problems which is great for my pain. I have sciatica problems as well.. But the best that I have is a marvelous pain management doc. who is brilliant and is always happy despite dealing with people's pain all day..

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@barbbie

Hi njc, I am 76 and have been diagnosed With SFN at least 10 years ago by two biopsies. I don't have the burning in my feet any more but the numbness continues and has gone up almost to my knees. I also have CRPS in both feet so it's hard for me to distinguish what is causing the pain. My feet are contracting much more lately. The numbness in my hands has me dropping things without realizing I have let go. It gives me exercise as I have to bend down and pick it up. That's a good thing. LOL. I am not aware of any brain involvement. I also have a spinal cord stimulator implanted due to disc problems which is great for my pain. I have sciatica problems as well.. But the best that I have is a marvelous pain management doc. who is brilliant and is always happy despite dealing with people's pain all day..

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Hi @barbbie I am interested when you say the spinal cord stimulator is great for your pain. So can you say approximately how much pain reduction it gives you? Is it 50%? More than that? Less? Just curious. Everyone has a slightly different experience with these stimulators but I rarely hear some one say what you have said, i.e. "great" for pain. Thanks, and my best to you, Hank

Liked by fiesty76

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@jesfactsmon

By the way, I am not sure if LDN acts on your immune system in such a way as to make autoimmune issues worse. If you have time/interest you might take a look at this article:
https://www.amymyersmd.com/article/low-dose-naltrexone/
They say in several things I have read that LDN helps to "modulate" the immune system, whatever that means. In any case it supposedly has the effect, at least for some people, of boosting the endogenous opioids, or endorphins, which actually can help to fight autoimmunity supposedly. Hank

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Interesting. I’ve never heard of naltrexone before. I’ll check it out. Thanks for the tip.

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@jesfactsmon

Hi @barbbie I am interested when you say the spinal cord stimulator is great for your pain. So can you say approximately how much pain reduction it gives you? Is it 50%? More than that? Less? Just curious. Everyone has a slightly different experience with these stimulators but I rarely hear some one say what you have said, i.e. "great" for pain. Thanks, and my best to you, Hank

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The pain I experienced the morning was a 10. I upped the intensity on my stim and the sharpness of the pain was reduced to dullness, helpful in itself, and I would say a good 50%. The sensation of the stimulator I can change in ramping it up to provide a pleasurable massaging like experience. I have my choice of several different sensations as well with some choices directed more to certain parts of my body – like more on feet or knees, etc. This is the second one – my first was implanted in 2012 and this one in 2018 at the urging of my pain management doctor as he said the current device was superior to the one I had implanted that was out of date.. I use this 24/7 decreasing it at night. The stimulator allows me to do things I wouldn't be able to do due to pain. I've recently been widowed and have many more projects that I have to do. Both my PCP and pain management are encouraging to keep moving. I have been enjoying being in the pool after my outdoor labors. The weather has been perfect for the pool temperature to be what I like. I get to exercise without being on my feet as my foot problems really restrict movement on land. I am thankful for their advice as I am seeing a difference in a better mood and a wee bit more flexibility.. Thanks Hank for giving me an opportunity to talk about all this.

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@barbbie

The pain I experienced the morning was a 10. I upped the intensity on my stim and the sharpness of the pain was reduced to dullness, helpful in itself, and I would say a good 50%. The sensation of the stimulator I can change in ramping it up to provide a pleasurable massaging like experience. I have my choice of several different sensations as well with some choices directed more to certain parts of my body – like more on feet or knees, etc. This is the second one – my first was implanted in 2012 and this one in 2018 at the urging of my pain management doctor as he said the current device was superior to the one I had implanted that was out of date.. I use this 24/7 decreasing it at night. The stimulator allows me to do things I wouldn't be able to do due to pain. I've recently been widowed and have many more projects that I have to do. Both my PCP and pain management are encouraging to keep moving. I have been enjoying being in the pool after my outdoor labors. The weather has been perfect for the pool temperature to be what I like. I get to exercise without being on my feet as my foot problems really restrict movement on land. I am thankful for their advice as I am seeing a difference in a better mood and a wee bit more flexibility.. Thanks Hank for giving me an opportunity to talk about all this.

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@barbbie.. The stimulator sounds very interesting. May I ask how big it is?

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@barbbie

The pain I experienced the morning was a 10. I upped the intensity on my stim and the sharpness of the pain was reduced to dullness, helpful in itself, and I would say a good 50%. The sensation of the stimulator I can change in ramping it up to provide a pleasurable massaging like experience. I have my choice of several different sensations as well with some choices directed more to certain parts of my body – like more on feet or knees, etc. This is the second one – my first was implanted in 2012 and this one in 2018 at the urging of my pain management doctor as he said the current device was superior to the one I had implanted that was out of date.. I use this 24/7 decreasing it at night. The stimulator allows me to do things I wouldn't be able to do due to pain. I've recently been widowed and have many more projects that I have to do. Both my PCP and pain management are encouraging to keep moving. I have been enjoying being in the pool after my outdoor labors. The weather has been perfect for the pool temperature to be what I like. I get to exercise without being on my feet as my foot problems really restrict movement on land. I am thankful for their advice as I am seeing a difference in a better mood and a wee bit more flexibility.. Thanks Hank for giving me an opportunity to talk about all this.

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No, I am glad to hear about it. Jim @jimhd had an SCS implanted I believe in 2017 (correct me if I am wrong Jim) and his gave him a lot of relief for about a couple years and then stopped helping. He had it adjusted a few times which helped but eventually, last year I guess, it just did not help any more. I hope you have better luck with yours. It sounds like a real blessing for you. I can't imagine experiencing a pain level at a 10 for any length of time. When you replaced the first one was it still working to any extent? Does the new one work better for you?

Liked by fiesty76

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@barbbie

The pain I experienced the morning was a 10. I upped the intensity on my stim and the sharpness of the pain was reduced to dullness, helpful in itself, and I would say a good 50%. The sensation of the stimulator I can change in ramping it up to provide a pleasurable massaging like experience. I have my choice of several different sensations as well with some choices directed more to certain parts of my body – like more on feet or knees, etc. This is the second one – my first was implanted in 2012 and this one in 2018 at the urging of my pain management doctor as he said the current device was superior to the one I had implanted that was out of date.. I use this 24/7 decreasing it at night. The stimulator allows me to do things I wouldn't be able to do due to pain. I've recently been widowed and have many more projects that I have to do. Both my PCP and pain management are encouraging to keep moving. I have been enjoying being in the pool after my outdoor labors. The weather has been perfect for the pool temperature to be what I like. I get to exercise without being on my feet as my foot problems really restrict movement on land. I am thankful for their advice as I am seeing a difference in a better mood and a wee bit more flexibility.. Thanks Hank for giving me an opportunity to talk about all this.

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Hi, @barbbie As Hank mentioned, I have a Burst DR spinal cord stimulator, implanted in 2017. It gave me 80% pain reduction. It was wonderful, after living for several years with increasingly brutal pain in my feet due to sfn. That's the good news. The first year it was great to be living with so much less pain.

Bad news. It started losing its effectiveness and I had to have it adjusted every 3 months, until the end of last year. I turned it off for the month of March and couldn't notice any change. I turned it back on in April.

Sort of good news. I had an appointment with a neurosurgeon, who ordered an MRI of my lower back and pelvis. She found significant spinal stenosis, and recommended surgery to relieve the pressure on my nerves, telling me that I should expect to have some pain relief. But there's no way to know how much relief until after surgery. I scheduled the surgery for the end of September, though I'd love to have it sooner. Because of the amount of yard work and misc. maintenance around our house and barn, I can't take time off to recover from the surgery. So, that's why I scheduled it so far in advance.

After we find out how much the back surgery helps, we could get back to adjusting the SCS so it starts doing its job. Fingers crossed. Prayers being prayed.

Jim

Liked by steeldove, Hank

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@jimhd

Hi, @barbbie As Hank mentioned, I have a Burst DR spinal cord stimulator, implanted in 2017. It gave me 80% pain reduction. It was wonderful, after living for several years with increasingly brutal pain in my feet due to sfn. That's the good news. The first year it was great to be living with so much less pain.

Bad news. It started losing its effectiveness and I had to have it adjusted every 3 months, until the end of last year. I turned it off for the month of March and couldn't notice any change. I turned it back on in April.

Sort of good news. I had an appointment with a neurosurgeon, who ordered an MRI of my lower back and pelvis. She found significant spinal stenosis, and recommended surgery to relieve the pressure on my nerves, telling me that I should expect to have some pain relief. But there's no way to know how much relief until after surgery. I scheduled the surgery for the end of September, though I'd love to have it sooner. Because of the amount of yard work and misc. maintenance around our house and barn, I can't take time off to recover from the surgery. So, that's why I scheduled it so far in advance.

After we find out how much the back surgery helps, we could get back to adjusting the SCS so it starts doing its job. Fingers crossed. Prayers being prayed.

Jim

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I expect Pain Medicine docs when I see them next week at Mayo will talk about a spinal cord stimulator and a peripheral nerve stimulator, but when they see the extent of my spinal arthritis, scoliosis, kyphosis, and stenosis, I'm not sure what I'll hear.

Liked by Hank

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@steeldove

I expect Pain Medicine docs when I see them next week at Mayo will talk about a spinal cord stimulator and a peripheral nerve stimulator, but when they see the extent of my spinal arthritis, scoliosis, kyphosis, and stenosis, I'm not sure what I'll hear.

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I hope they give you the thumbs up to go ahead @steeldove , it seems like you'd benefit greatly from it. My hat is off to you at your bravery and willingness to go forward with this considering all that you are dealing with. I admire you! Best, Hank

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@jimhd

Hi, @barbbie As Hank mentioned, I have a Burst DR spinal cord stimulator, implanted in 2017. It gave me 80% pain reduction. It was wonderful, after living for several years with increasingly brutal pain in my feet due to sfn. That's the good news. The first year it was great to be living with so much less pain.

Bad news. It started losing its effectiveness and I had to have it adjusted every 3 months, until the end of last year. I turned it off for the month of March and couldn't notice any change. I turned it back on in April.

Sort of good news. I had an appointment with a neurosurgeon, who ordered an MRI of my lower back and pelvis. She found significant spinal stenosis, and recommended surgery to relieve the pressure on my nerves, telling me that I should expect to have some pain relief. But there's no way to know how much relief until after surgery. I scheduled the surgery for the end of September, though I'd love to have it sooner. Because of the amount of yard work and misc. maintenance around our house and barn, I can't take time off to recover from the surgery. So, that's why I scheduled it so far in advance.

After we find out how much the back surgery helps, we could get back to adjusting the SCS so it starts doing its job. Fingers crossed. Prayers being prayed.

Jim

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Jim, so maybe your spinal stenosis is at the root of your SCS no longer working, that would be a great circumstance! I am definitely shooting prayers your way my friend, and I hope the SCS starts helping again after your surgery. Best, Hank

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@jesfactsmon

I hope they give you the thumbs up to go ahead @steeldove , it seems like you'd benefit greatly from it. My hat is off to you at your bravery and willingness to go forward with this considering all that you are dealing with. I admire you! Best, Hank

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@jesfactsmon Hank, I'm 82 years old, and will be driving myself from Springfield MO to Rochester using the wonderful Kempf hand controls on my little Prius C. That's the part that takes bravery!!!

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@jimhd

Hi, @barbbie As Hank mentioned, I have a Burst DR spinal cord stimulator, implanted in 2017. It gave me 80% pain reduction. It was wonderful, after living for several years with increasingly brutal pain in my feet due to sfn. That's the good news. The first year it was great to be living with so much less pain.

Bad news. It started losing its effectiveness and I had to have it adjusted every 3 months, until the end of last year. I turned it off for the month of March and couldn't notice any change. I turned it back on in April.

Sort of good news. I had an appointment with a neurosurgeon, who ordered an MRI of my lower back and pelvis. She found significant spinal stenosis, and recommended surgery to relieve the pressure on my nerves, telling me that I should expect to have some pain relief. But there's no way to know how much relief until after surgery. I scheduled the surgery for the end of September, though I'd love to have it sooner. Because of the amount of yard work and misc. maintenance around our house and barn, I can't take time off to recover from the surgery. So, that's why I scheduled it so far in advance.

After we find out how much the back surgery helps, we could get back to adjusting the SCS so it starts doing its job. Fingers crossed. Prayers being prayed.

Jim

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I will pray for a great outcome for your surgery. I prefer my pain management doc as I am allergic to so many medications, including MAC anesthesias. He has helped me significantly with radio frequency ablations. In some places I have had close to two years relief. I hate headaches and an injury to my neck gave me occipital headaches. It's been a year since I had the last rfas and I am still headache free. He has also done some on my lower back with success. Not sure how long this latest series have been doing their thing.. With the stimulator I have seven programs and a variety of pulsations. It can take adjustment to the stimulator to get the best for you. I just turned my feet one on. You mentioning that reminded me I have that available.. Feels pretty good while sitting!

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