Living with Neuropathy - Welcome to the group

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. 🙂

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. 🙂

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. 🤔

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..

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

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

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.

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.

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.

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