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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@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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Replies to "Hi @njc and welcome. My wife has peripheral neuropathy (PN) and I do my best to..."

I'd like to clarify the previous post. I meant to say "my wife does her best to keep ME from doing anything particularly dumb". Gotta be careful, she could read this at some point ya know.

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. 🙂