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.

Today, I learn Greek using a software. I am a beginer and it goes slow.
My opinión in Pain is that is a Global matter and a very lonely experience.

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My advice to others is: Do not enter in sadness, desperation or angry mood. It get pain worst, really don’t help.
Get informed with science advances. New treatments are going to be made.

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@silverapple

My advice to others is: Do not enter in sadness, desperation or angry mood. It get pain worst, really don’t help.
Get informed with science advances. New treatments are going to be made.

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Hi @silverapple I agree, being angry does not help each individual with their health situation. Sorry to hear about your difficult health struggles. We do have to learn our new way of life and be thankful for our prior experiences. The journey can be lonely because everyone may have a different pain location and a different pain threshold. By learning and not being biased we gain the knowledge to make educational decisions for ourselves and perhaps be less dependent. Many times there are no answers by medical professionals. I do the next best thing and that is to learn by trial and error. After all, it is me that deals with my medical issues day by day and not the medical professionals. I have learned on my own to combat health issues when the medical professionals had no clue. I have come a long way and feel much better. I do not take any medications. I do have a high pain tolerance. I wasn’t going to sit back and be angry. Instead, I used my knowledge to help myself. I believe being optimistic is very helpful. Interesting you chose to learn Greek. May I ask your motivation for learning the basic Greek language? The dialect can be different depending on the region. Take care of yourself. I wish you well to continue with a positive attitude. Toni

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@avmcbellar Good morning:
When I started to research Ancient Music, I discovered a piece “Epitah of Seikilos”, the sonority captivated me. It is said Ta Eliniká glossa. My Pc app it is in Modern Greek.
-Apó pu eíste? Eímai apó pu tis Inomenes Politíes. Pó se léne?-

Where are you from? I ‘m from United States. What’s your name.

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The emotional response is a process, I think. When finally understand it, it cames the fact: You have to research and be updated.

Have a good morning

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@silverapple

The emotional response is a process, I think. When finally understand it, it cames the fact: You have to research and be updated.

Have a good morning

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@silverapple, You might enjoy and find the following discussions helpful...

- Music Helps Me: https://connect.mayoclinic.org/discussion/music-helps-me/
- Art for Healing: https://connect.mayoclinic.org/discussion/art-for-healing/
- How do you identify trustworthy health information?: https://connect.mayoclinic.org/discussion/how-do-you-identify-trustworthy-health-information/

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@johnbishop

@silverapple, You might enjoy and find the following discussions helpful...

- Music Helps Me: https://connect.mayoclinic.org/discussion/music-helps-me/
- Art for Healing: https://connect.mayoclinic.org/discussion/art-for-healing/
- How do you identify trustworthy health information?: https://connect.mayoclinic.org/discussion/how-do-you-identify-trustworthy-health-information/

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For a person like me who has pain in all spine segments plus head and face, what kind of seat do you recomend me. The base shows be very soft, hard superficies give me more pain. Tha back most be high and cushioned too.

This is my actual seat, very painful.

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@silverapple

@avmcbellar Good morning:
When I started to research Ancient Music, I discovered a piece “Epitah of Seikilos”, the sonority captivated me. It is said Ta Eliniká glossa. My Pc app it is in Modern Greek.
-Apó pu eíste? Eímai apó pu tis Inomenes Politíes. Pó se léne?-

Where are you from? I ‘m from United States. What’s your name.

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Thanks @silverapple, I currently live in Florida. I had never listened to the Epitaph of Seikilos before. It certainly is different from the modern day Greek music, of course depending on the region. Very nice you are learning the language. I applaud you. It is not an easy language. A good avenue for focusing on other things to remain positive. I always use language to help others by interpreting. It has always been useful to residents in the past, especially in communities with a large greek population. I enjoy listening to music as well. It is a great motivator!

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@silverapple

For a person like me who has pain in all spine segments plus head and face, what kind of seat do you recomend me. The base shows be very soft, hard superficies give me more pain. Tha back most be high and cushioned too.

This is my actual seat, very painful.

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I like sitting in a zero gravity type chair to take the pressure off of my back but that may or may not be the same for everyone. I think you have to try a chair out to see if it feels OK and would help you. Here's an article but there are many types and prices for these types of chairs - https://ergonomictrends.com/best-zero-gravity-chairs-back-pain/

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