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Member Neuropathy Journey Stories: What's Yours?

Posted by John, Volunteer Mentor @johnbishop, May 12, 2020

This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.

— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?

Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?

What's your neuropathy story?

Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.

Interested in more discussions like this? Go to the Neuropathy Support Group.

gregd1956 | @gregd1956 | May 2 12:46pm

Why? —- I have a “damage of nerve” that started 2 years ago by falling down on my garage on my rear ends. 😕

What? —- That pain hit from my rear ends to the bottom under my feet. No more cutting the grass; no more walking outside; kills my balance; no more fixing the outside or inside house; and on…😟

Treatment use? —- I tried pills to get rid of pain in my body. I have a TBI accident 12 years ago, but I didn’t want or need my pain-meds UNTIL falling down in my garage. During that, I took these pain-meds in my low body. Well, that shorts helped my (feels like 50% on my body), but still no more cutting our grass… and the rest of my problems. Well, shortly, that meds didn’t fit. The pain - 100% of it - was killing me, BUT by sitting down is great… the pain ends. Who do you stand-up? I need that fit a lot of our needs: going to a bathroom; helping my wife for foods & others; going to other doctors; going to the drug store; buying our different stores - like COSTCO; and on…😠

What side effects? —- pain from my 2 rear ends to the bottom of my feet.. some of the pain moves little or no feeling on my right side from foot; my right-side if my leg goes thru little feeling of my foot and adds other less-usage on the weakness that could fall down. It’s a funny way, my right-side was stronger by lifting (before my TBI).🧐

>>>GOOD<

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gregd1956 | @gregd1956 | May 2 1:08pm

Shoot… I lost the writing the GOOD options, shoot. Well here it is, a short tiny thing:

❤️GOOD❤️ options —- 3 weeks ago, Doctor A, it took 4-5 hours inside my back, close to my tight-side rear end. He put this, yes, this nerve moved between two sides and hit both of them. He moved it and the pain is gone. Ok, I’ve got the other “problems” including my unbalance at could or was falling down on my front of backwards, That hits my brain area. ❤️ No More Pain!!! ❤️ Well, my exercising from my read-ends to the bottom for my bottom legs is my need daily!

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josiegirl2 | @josiegirl2 | May 18 6:01pm
In reply to @artscaping "Good afternoon. This discussion is an effort to give everyone an opportunity to share their neuropathy..." + (show)
@artscaping

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.
Chris

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Hi and like your learn, alter and then accept. Not loving it but so true.

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josiegirl2 | @josiegirl2 | May 18 6:58pm

I have so much pain and bad back and wonder if others deal with it. When you reach out to others you are a cry baby. This is major pain. Scary

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