Living with Neuropathy - Welcome to the group

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):

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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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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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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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:

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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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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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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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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