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.

arcuri24 | @arcuri24 | Feb 28 2:12pm

I never had a bunionectomy. My neuropathy is from celiac disease. However, my shin shave biopsy procedure has given me enough grief. My neighbor had a bunionectomy and suffered pain and numbness. My dermatologist never bothered to explain the risks of the shave surgery I underwent. The practice of medicine has apparently been transformed to one that is not considerate of patient outcomes or concerns.

jnemeth1214 | @jnemeth1214 | Apr 29 11:26am

Here is my member journey story

I was diagnosed with stomach cancer in July 2021 I received 8 rounds of FOFOX Chemotherapy at Sloan Kettering which included Oxyplatin as part of the regimen Not one word from Sloan about neuropathy

That was followed by full gastrectomy Surgery was a success as was the chemo treatment as I am still in remission today

Throughout the 8 rounds of chemo, Sloan would ask me about any numbness or tingling in my feet or hands to which I replied each time, no

About one month after the last treatment sure enough I started feeling numbness and pain in my feet and was told it was a result of the chemo

Fast forward 5 years almost and have been living with this constant pain ever since

I have tried all meds including gaba, cymbalta, Lyrica, Low Dose Naltrexone

Also tried accupuncture, Calmare Scrambler, Ketamine infusions, steroid injections, Capsascin patches, lidocaine patches, etc

Not to mention ketamine compound cream, various other creams and salves, etc

Not one of these has offered any kind of relief I am Very happy for those out there that report improvement from some of this stuff which only makes me feel like an outlier of sorts

Why hasn’t any of this helped me with this ever present suffering? Is there something I’m doing wrong or missing out on?

The things that do help are being engaged in things that I enjoy which distract me so much that say two hours later I realized that I just had two hours of relief

That includes pick up softball, weekly golfing, spending time with friends and family, But I can’t be distracted 24/7

One last thing that has helped is coming to accept that this is the new normal for me A therapist likened it to being in a tug of war that I can’t win Pain is on one side of the rope and I’m on the other and it’s time to just drop the rope and accept I will never win I can however as I said finally accept this new way of life, continue to keep an open mind about something that might help and try and live life to the fullest at 71 years of age

Oh yes and count the blessings in my life, keep a positive attitude and have gratitude that I am still here Sometimes easier said than done

John, Volunteer Mentor | @johnbishop | Apr 29 3:17pm

In reply to @jnemeth1214 "Here is my member journey story I was diagnosed with stomach cancer in July 2021 I..." + (show)

@jnemeth1214