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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.

jan64 | @jan64 | Oct 17 5:52am
In reply to @rwinney "Hello @jan64. I'm sorry you're experiencing neuropathy symptoms and all that comes with. It is quite..." + (show)
@rwinney

Hello @jan64. I'm sorry you're experiencing neuropathy symptoms and all that comes with. It is quite a learning curve to adapt to change or loss of function or abilities. I definitely feel your words and have compassion for you.

Indeed, it was 4 years ago (wow, already) October 26th, that I entered the pain rehab center at Mayo Clinic. PRC was one of the best experiences of my life. The program teaches a person as a whole and equips them strategies and a plan to move forward with chronic issues they have through physical, emotional, behavioral, and chemical coaching and therapies.

I was diagnosed with central sensitization which is a central nervous system syndrome causing chronic pain and or heightened sensory dysfunction. During the time neuropathy was kicking my butt, I was focused strictly on that not quite understanding there was a bigger picture. For that matter the PRC program was exactly what I needed to make the most out of how life had changed and how to find positivity and adaptation moving forward to focus on what I could do versus what I couldn't.

It appears you're on the right track and having the proper testing. I wish you good luck with the skin punch biopsy results and completely understand the perplexity of emotions and not knowing if you hope for positive or negative results. My opinion of that is to learn and understand as much as you can about your condition, be your best advocate and make sure you clearly understand from your doctors what your body is dealing with so that you can move forward with a plan. Will you report back on your results?

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Thanks for the information about the Mayo Clinic. I have been trying to learn about central sensitization since my symptoms occurred not long after what seemed to be a minor surgery and before that a minor car accident. I am listening to Curable podcast. I wish there were more places that offered programs like the Mayo Clinic.

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