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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
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. 🤔
Replies to "For a number of years I have had diabetic neuropathy with burning and stinging in my..."
Sounds like you have had chronic pain for years. I've only had it for 5 years and I think that is way too long. I have SFN in my feet and hands,, but mostly in my feet. They confirmed it via a biopsy. I still remember the doctor telling me that it would only get worse and there is no cure for it. I appreciated him being direct even if the outlook wasn't good.
When my feet start really "burning" I cool my feet off with cold water for 2 hours til the pain medication kicks in.
I'm 60 so it looks like I'm one of the younger ones with this painful diagnoses.
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
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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@njc, I am glad you decided to step out of your comfort zone and join us here on Connect! We are a mixed bunch of all ages and all ages are welcome. Our mission is to connect members with other members who share similar symptoms so that we can learn from each other. I'm 77 going on 80 so not that far behind you. My goal in life is to learn at least one new thing every day...yup, you guessed it, sometimes I learn the same thing more than once 🙂 Based on some of the symptoms you mentioned. you may also be interested in reading and participating in the following discussions:
Esophagus issues: https://connect.mayoclinic.org/discussion/esophagus-issues/
Arachnoiditis: Looking to talk with others: https://connect.mayoclinic.org/discussion/arachnoiditis/
Late Stage Primary Sjogren's Syndrome: https://connect.mayoclinic.org/discussion/late-stage-primary-sjogrens-syndrome/
Lupus diagnosis need help: https://connect.mayoclinic.org/discussion/lupus-diagnosis-need-help/
You mentioned you have been a Type 1 diabetic for 13 years. Have you made any lifestyle changes to try and help with your diabetes or other symptoms?