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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 1 day ago | Replies (6026)
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@artscaping

Good evening, @memyselfi, welcome to Connect. I am so happy to see a very nice introduction with specific information about your condition and what you have tried so far to control the neuropathic symptoms.

I think you started with your feet. I also have to deal with pain and tingling tangles in my feet. Right now, my right heel feels like it is giving off painful sparks. And before the night is over, those specific neuropathic symptoms might have moved to the left foot.

You mention going through a lot of tests. Did that include a skin biopsy to identify small fiber neuropathy?

Other than Lyrica, have you been introduced to any topicals for your feet? Some of the members even use Vicks and other off-label products.. I started with a topical that was lidocaine-based and made by a compounding pharmacy. If you choose this type of custom topical you can modify the recipe as needed. If you are interested in medical cannabis, then the best options that I have found are made by Papa and Barkley, www. papaandbarkley.com.

And while I'm at it, please check out the following helpful websites for the latest information about neuropathy symptoms and treatments.
https://www.foundationforpn.org/
https://neuropathycommons.org/

At this point, I am just going into year 11 with SFN "small fiber neuropathy." In that time my medications and dosages have changed considerably. Right now I am going through what I hope is the end of a four-month program to taper off some medications and substitute them with new ones that my doctor and I hope will fit my evolving situation better. And you are correct, everyone's situation is different. However, you didn't catch it too late. Neuropathy is a progressive condition for which at this point there is no cure.

Regarding your activities, I am right with you about stretch Yoga and a hand's on therapy. In fact, I had my first of two MFR (myofascial release therapy) sessions this week. Tomorrow I will wake up with my Yoga group on Zoom.

For a long time, @memyselfi, I was in a state of denial as I was forced to accept the reality that neuropathy will be a major issue for me for the rest of my life. And by the way, I also have the "sweating" issue....perhaps 2 or 3 times a day. Would you please share with me what you have found to be helpful with the daily sweat?

May you be safe, free, and protected from inner and outer harm.
Chris

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Replies to "Good evening, @memyselfi, welcome to Connect. I am so happy to see a very nice introduction..."
memyselfi | @memyselfi | Jan 16 7:53pm

Hi Chris,

Thank you for the response. I've had painful things happen to me before (got burned, kidney stone, various accidents), but I've been fortunate that until this I've never had something that fell into the chronic pain/discomfort area. Like another said, I don't like to sound like a complainer, there's always someone worse off than yourself, but more just seeing if others had strategies that might work for me beyond what I've tried.

In answer to your question, no, I've never been tested for "small fiber neuropathy" via a skin biopsy. I didn't even know that was a thing. I'm not sure what the knowing would do for me, but perhaps it would. My tests were regular targeted x-rays, an MRI, and a nerve test. All these test did for me was conclude that it was nerve damage most likely a result from some spinal disk and arthritic degeneration.

I have not tried topical creams as of yet, perhaps because a mixture of I just haven't, and a bit of skepticism that they would actually work.

The morning exercises I do are a mixture of yoga stretching, the best that I got out of physical therapy, and just other stretching things that have always worked well and kept me limber in the past. I do these in the morning before work for about 25 minutes. The work I do in the gym is more weight/resistance stuff for my legs (I emphasize those more than ever now) in the belief that if I can get more blood circulation into my legs and feet it might help to stave off the pain.

Thank you much for the links. I'll check them out. I just want to see what's out there to do before I wave the white flag and venture into more hardcore pain killers. As of now, I'm mostly an IBU and Tylenol taker, though I have drifted occasionally into Tramadol. The thing is though, when it really acts up, goes to that 6-7-8 on the pain scale, they hardly dent it.

I do not have an answer for the annoying sweat thing. I just use powder, but that dissipates pretty quickly on bad days. My partner did find something online about a shot one can take to relieve such sweating, but haven't done a deep dive yet on it. Still in the research department on that annoying symptom.

I've really gained a deeper understanding of people whop suffer from chronic pain. It's not just the pain in and of itself; it's that it saps so much of your mental and emotional energy reserve that you want to employ in being productive and just enjoying like, for heaven's sake.

I have to run. Thanks again for the response, and best to you.

Glenn

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