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John, Volunteer Mentor (@johnbishop)

Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: 3 days ago | Replies (372)

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Good afternoon. This discussion is an effort to give everyone an opportunity to share their neuropathy journey….all in the same discussion. How helpful will that be……you can then use the search field by topic or treatment. As your journey continues, it will be great to keep up with each other and add to our neuropathy knowledge bank.

So….here we go. My favorite saying when I learn about something on Connect, "if only I had known" or "if only I had done some research", or "if only I had begun posting earlier"

The scene:………………….patio breakfast and a few games of cribbage with my e-harmony friend, now life partner, about 7 years ago. We set up the board and he handed the cards to me to shuffle. When I tried and they scattered everywhere, he asked: "What's the matter with your hands?" That was my neuropathy coming out party.

Next steps: ………………..I revealed my situation to my two nurse friends. One offered me essential oils, the other medical cannabis. I chose cannabis because I knew my pain level was too high for well-intentioned essential oil products. To this day I manage my pain with a few CBD: THC products…..tinctures and topicals in different ratios. I was beginning to have high-level pain in my arms, wrists, and hands, electric shocks in my head, and burning pain down my legs as well as inside my abdomen. Good thing I had a coach. I would have been overwhelmed with all of the experimentation and evaluation required at that time to find the best medical cannabis products.

In the meantime:…………My orthopedic surgeon was consulted because at the time I had fallen down the stairs and needed a rotator cuff repair on the left side. He had previously done the reverse shoulder on the right side and I thought possibly it was "in trouble". He immediately took X-rays and went with me to his "buddy" who does spine work. They collaborated, put a hold on the rotator cuff, and did the cervical fusions first, rotator cuff second. I didn't even know enough to tell the difference between thoracic and cervical. I did remember lumbar.

Enter the neurologist:…..Only after the cervical surgery had healed and fused, did I learn that the pain, tingles, and needles, were still there which led to more tests and finally a punch skin biopsy to confirm that I had small fiber peripheral neuropathy (SFPN). It was not a bad shoulder surgery and I wore that darn brace for 3 months so there would be no claim of bad neck surgery. I also learned that my idea of slow learner had no comparison to bruised nerves that need to heal to be helpful.

Bump in the road:………. I had to get off of an anti-depressant that really helped my early-onset EOL ideation because of digestive side effects that were just too much to overcome. I substituted one more dropper of cannabis in the evening. Not as good as the anti-depressant until I adjusted some dosages.

The future:………………… learn everything I can. Alter what I can, accept what I can't.
Knowledge is Power. Share your neuropathy journey to help others on Connect.

What would I tell my best friend if she was diagnosed with SFN?
Join Mayo Connect….. participate, contribute, question or just use it for research……..then you won't be saying, "if I had only known."

May you be safe and protected.

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Replies to "Good afternoon. This discussion is an effort to give everyone an opportunity to share their neuropathy..."

@artscaping Hi Chris, It is almost like your neuropathy snuck up on you. I wonder if, when you fell down the stairs, that was also due to neuropathy. Not a pretty picture. To have surgery, and have the tingling, needles, pain still there must have been devastating. I am so glad that you are here on Connect to share so many things. Your road has been far from easy, and I am here with you. Lori

Chris I agree with you absolutely. Connect is a most wonderful tool for those dealing with or simply trying to understand PN. The great thing is that it is so well organized and it is fairly easy to search around for things. OK, so in reading your saga it sounds like (correct me if I missed it) there is no one known precursor to your developing neuropathy? Strange how so many people do not know what caused it for them. I suppose for some it might be hereditary. I am glad you are finding help from THC. Hank

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