1. < Neuropathy
Mentor

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.

Hank | @jesfactsmon | Sep 1, 2020
In reply to @sunnyflower "Hi Chris, I totally get it. Tears at bedtime knowing what I will face in the..." + (show)
@sunnyflower

Hi Chris, I totally get it. Tears at bedtime knowing what I will face in the night and when I wake up. Rheumatology patients are known to be worse in the mornings. That is just one of my myriad of painful diseases and conditions. The first thing I do every morning is to thank and praise God for the day b/c I know He has a purpose in it. If I didn't know that, and trust Him in my circumstances, I would have been toast a long time ago! I realize I am very blessed as God has allotted an extra measure of faith to me but I still have to claim it and spend time getting to know Him in His word, the bible. It helps me so much to know this life is so temporary in light of all eternity and that when we were in the womb, before we took our first breath that He had each day of our lives planned (Psalm 139:16).

At the same time of my worst suffereing, I am acutely aware of my innumerable blessings. It's a gift. There is constant warfare going on in my thoughts so I have to practice getting rid of the stinkin' thinkin' and replace it with truth/bible b/c God talks about that a lot and teaches us how to "arm up". Being so analytical doesn't help!!!!!!!!!!!!

Hope you find peace, comfort and encouragement today not to mention, no pain!!!! All the best, Sunnyflower

Jump to this post

@sunnyflower
Sunny, you are one of the people on Connect who just truly inspires me SO MUCH! I can't tell you how much I look up to you and appreciate your words, your incredible attitude, your (where does it come from?) indomitable spirit. Yes I do know where it come from, you are clearly living in that bubble one can only be in with God Himself at your core. But for us weeny little humans it is still hard to comprehend how that can possibly compensate for the endless and seemingly unendurable suffering you face EVERY DAY. I am a believer, I adore the Lord, and even I have a difficult time, never having walked in your pain-filled shoes , to understand how that works. My gratitude for Him is manifested by the fact of your existence Sunny (if that makes any sense, my attempts to express myself about you and God are starting to turn into gobbledygook). OK, anyway you are wonderful! Hank

REPLY
1 reply
sunnyflower | @sunnyflower | Sep 1, 2020
In reply to @artscaping "@sunnyflower, thank you for your warm greeting and good wishes. Does that include coming to chase..." + (show)
@artscaping

@sunnyflower, thank you for your warm greeting and good wishes. Does that include coming to chase my pain away? I have offered to exchange two hours of numbness from @johnbishop for one hour of my body on a normal pain day. He runs away. I think I would too.

Sometimes I wake up and my brain is saying "don't bother getting up......you can't do anything anyway". That's all it takes and I respond "No, not me.....I have to keep going and feeling and enjoying every minute I can." And so I jump (more like a crawl) out of bed and begin the chore of getting my body and its medications ready for the day. And you, my dear @sunnyflower are just one reason for getting up and getting going and engaging by exchanging good wishes.

Stay in touch......I am here for you.
Chris

Jump to this post

Thank you for your kind words Chris! I wish I could Chase your pain away. 😊

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 1, 2020
In reply to @rwinney "@artscaping Doesn't take rocket science, does it Chris?!?" + (show)
@rwinney

@artscaping Doesn't take rocket science, does it Chris?!?

Jump to this post

@artscaping It's so sad that surgery to help body parts possibly creates long lasting nerve damage. Especially if you have as many surgeries as you have Chris. My mom is right up there with you in surgeries totaling 20 something and she suffers from what I tell her is most definitely nerve damage from all that cutting! So awful. I'm so sorry.

REPLY
2 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Sep 1, 2020
In reply to @rwinney "@artscaping It's so sad that surgery to help body parts possibly creates long lasting nerve damage...." + (show)
@rwinney

@artscaping It's so sad that surgery to help body parts possibly creates long lasting nerve damage. Especially if you have as many surgeries as you have Chris. My mom is right up there with you in surgeries totaling 20 something and she suffers from what I tell her is most definitely nerve damage from all that cutting! So awful. I'm so sorry.

Jump to this post

@rwinney, I have had this hypothetical conclusion for some time now as I observe where the neuropathy pain starts and what it takes to stop it. I think about hanging face down in a sling over the hospital bed for several days with a concussion the size of an avocado on my head, and various scratches and pains here and there. When the neuro clinician visited, he was very concerned about the issues I would run into later in life. I was about 27 at the time and the future always seemed bright and full of joy. He told me to be very careful and to take care of my neck. He warned me that I needed to wear the neck brace so I wouldn't have to have neck surgery later. You guessed it.....I had neck surgery later.

I nodded to his comments and set up a faculty volley ball tournament as soon as he left the room. What do you call that? Stupid? Ignorant? Stubborn? All of the above?

When I see young people taking risks for themselves and others with COVID, I remember my arrogance and know-it-all attitude. I really didn't pay much attention to reality and did not honor medical knowledge.

And I know you want to know if I played volleyball the next week or so. Of course, I did. I was young and everything could be fixed.

Thanks for your kindness. 90% of this was just my own fault. 10% was also my fault but I didn't know it.
Good night...........
Chris

REPLY
2 replies
sunnyflower | @sunnyflower | Sep 1, 2020
In reply to @rwinney "@artscaping It's so sad that surgery to help body parts possibly creates long lasting nerve damage...." + (show)
@rwinney

@artscaping It's so sad that surgery to help body parts possibly creates long lasting nerve damage. Especially if you have as many surgeries as you have Chris. My mom is right up there with you in surgeries totaling 20 something and she suffers from what I tell her is most definitely nerve damage from all that cutting! So awful. I'm so sorry.

Jump to this post

😥

REPLY
sunnyflower | @sunnyflower | Sep 1, 2020
In reply to @jesfactsmon "@sunnyflower Sunny, you are one of the people on Connect who just truly inspires me SO..." + (show)
@jesfactsmon

@sunnyflower
Sunny, you are one of the people on Connect who just truly inspires me SO MUCH! I can't tell you how much I look up to you and appreciate your words, your incredible attitude, your (where does it come from?) indomitable spirit. Yes I do know where it come from, you are clearly living in that bubble one can only be in with God Himself at your core. But for us weeny little humans it is still hard to comprehend how that can possibly compensate for the endless and seemingly unendurable suffering you face EVERY DAY. I am a believer, I adore the Lord, and even I have a difficult time, never having walked in your pain-filled shoes , to understand how that works. My gratitude for Him is manifested by the fact of your existence Sunny (if that makes any sense, my attempts to express myself about you and God are starting to turn into gobbledygook). OK, anyway you are wonderful! Hank

Jump to this post

To God alone Be The Glory! He alone is Worthy. That He allotted me an extra measure of faith is
beyond my comprehension. Believe it or not, I praise and thank Him for my pain and even for my constant new diagnoses. It's verses like this that keep me going: Psalm 34:1-4
1. "I will extol the Lord at all times;
his praise will always be on my lips.
2 I will glory in the Lord;
let the afflicted hear and rejoice.
3 Glorify the Lord with me;
let us exalt his name together.
4 I sought the Lord, and he answered me;
he delivered me from all my fears."
The Lord is not unreasonable, He just wants us to trust Him in our circumstances. I am aware that I constantly focus on my circumstances instead of the One in control of my circumstances and when I shift that focus, it makes a big difference for the better. It's spiritual warfare and if you're in your head a lot like me, it's pretty tough but I always have that way out and can replace the stinkin' thinkin' with the truth of God's word and that is what helps me the most. Also some good worship and praise music works wonders too or any music that you like. When I do a little bit of kitchen work it's usually the Beatles and some spiritual music. Well folks, that's a little more of how I walk through the many fires here on earth in this lifetime that we all walk, limp, waddle and crawl through.

I wish and pray every good thing for each one of you precious people. Thank you so much for your inspiration, encouragement and support. The effort you put in to one another here on Connect is very, very special and very, very necessary! Thank you to Mayo Clinic and all of the volunteers and monitors as well.

Being a part of Connect is an honor! I have very limited time when I feel good enough to read and respond to the posts so I prayed that no one feels I don't care or, left out or offended if I don't respond or if I'm away from the blog for any prolonged periods of time. I think that is probably true for most of us here on connect.

Okay, you can wake up now, the novel is over! LOL! Sunny 🤗🙏🙃

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 1, 2020
In reply to @artscaping "@rwinney, I have had this hypothetical conclusion for some time now as I observe where the..." + (show)
@artscaping

@rwinney, I have had this hypothetical conclusion for some time now as I observe where the neuropathy pain starts and what it takes to stop it. I think about hanging face down in a sling over the hospital bed for several days with a concussion the size of an avocado on my head, and various scratches and pains here and there. When the neuro clinician visited, he was very concerned about the issues I would run into later in life. I was about 27 at the time and the future always seemed bright and full of joy. He told me to be very careful and to take care of my neck. He warned me that I needed to wear the neck brace so I wouldn't have to have neck surgery later. You guessed it.....I had neck surgery later.

I nodded to his comments and set up a faculty volley ball tournament as soon as he left the room. What do you call that? Stupid? Ignorant? Stubborn? All of the above?

When I see young people taking risks for themselves and others with COVID, I remember my arrogance and know-it-all attitude. I really didn't pay much attention to reality and did not honor medical knowledge.

And I know you want to know if I played volleyball the next week or so. Of course, I did. I was young and everything could be fixed.

Thanks for your kindness. 90% of this was just my own fault. 10% was also my fault but I didn't know it.
Good night...........
Chris

Jump to this post

@artscaping Chris - You speak the undeniable truth. And no doubt in my mind you played that volleyball game! You GO girl! 💪🏼

As a mother of 2 athletes, and wife of 1 athletic husband who've had multiple concussions, head gashes, stitches, broken noses, shattered elbow, SVT, migraine, sprained ankles, broken foot, shin splints, torn ACL and meniscus (hmmm...am I forgetting anything else?) and still played sports....I GET IT. Not to mention, my mother who at 28 was hit broad side on her motorcycle by an 18 year old coming out of his high school parking lot, foot lose and fancy free. Youth is precious, daring, courageous and yes, invincible at times but, not immune to cause and effect.

Mindfulness teaches that we live in the moment. Part of that is seizing the moment, stupid as it may be, which you did. And I bet you have incredible memories from the fun times while you were young, active and enjoyed the hell out of life! 😁

I'm sorry for how you suffer as a result. Life can be one big hindsight cant it? Hey, look on the bright side...you notice I didnt include myself in any of the demonstrated fun up top? That's because yours truly was never active or involved in things that could hurt me. NEWS FLASH...here I sit with neuropathy anyway. Go figure.

It makes my heart happy to hear of your fun times, back in the day. I can just imagine your spunk, grit and tenacity!! It shines through to this day, even if a duller version, you still got it Chris. 😊 Be well and have a restful evening.
Rachel

REPLY
1 reply
sunnyflower | @sunnyflower | Sep 2, 2020
In reply to @rwinney "@artscaping Chris - You speak the undeniable truth. And no doubt in my mind you played..." + (show)
@rwinney

@artscaping Chris - You speak the undeniable truth. And no doubt in my mind you played that volleyball game! You GO girl! 💪🏼

As a mother of 2 athletes, and wife of 1 athletic husband who've had multiple concussions, head gashes, stitches, broken noses, shattered elbow, SVT, migraine, sprained ankles, broken foot, shin splints, torn ACL and meniscus (hmmm...am I forgetting anything else?) and still played sports....I GET IT. Not to mention, my mother who at 28 was hit broad side on her motorcycle by an 18 year old coming out of his high school parking lot, foot lose and fancy free. Youth is precious, daring, courageous and yes, invincible at times but, not immune to cause and effect.

Mindfulness teaches that we live in the moment. Part of that is seizing the moment, stupid as it may be, which you did. And I bet you have incredible memories from the fun times while you were young, active and enjoyed the hell out of life! 😁

I'm sorry for how you suffer as a result. Life can be one big hindsight cant it? Hey, look on the bright side...you notice I didnt include myself in any of the demonstrated fun up top? That's because yours truly was never active or involved in things that could hurt me. NEWS FLASH...here I sit with neuropathy anyway. Go figure.

It makes my heart happy to hear of your fun times, back in the day. I can just imagine your spunk, grit and tenacity!! It shines through to this day, even if a duller version, you still got it Chris. 😊 Be well and have a restful evening.
Rachel

Jump to this post

Chris and Rachel, you girls slay me 🤣! I hope you have a much better than usual day. Warest regards, Sunny 🤗💕

REPLY
lorirenee1 | @lorirenee1 | Sep 2, 2020
In reply to @sunnyflower "To God alone Be The Glory! He alone is Worthy. That He allotted me an extra..." + (show)
@sunnyflower

To God alone Be The Glory! He alone is Worthy. That He allotted me an extra measure of faith is
beyond my comprehension. Believe it or not, I praise and thank Him for my pain and even for my constant new diagnoses. It's verses like this that keep me going: Psalm 34:1-4
1. "I will extol the Lord at all times;
his praise will always be on my lips.
2 I will glory in the Lord;
let the afflicted hear and rejoice.
3 Glorify the Lord with me;
let us exalt his name together.
4 I sought the Lord, and he answered me;
he delivered me from all my fears."
The Lord is not unreasonable, He just wants us to trust Him in our circumstances. I am aware that I constantly focus on my circumstances instead of the One in control of my circumstances and when I shift that focus, it makes a big difference for the better. It's spiritual warfare and if you're in your head a lot like me, it's pretty tough but I always have that way out and can replace the stinkin' thinkin' with the truth of God's word and that is what helps me the most. Also some good worship and praise music works wonders too or any music that you like. When I do a little bit of kitchen work it's usually the Beatles and some spiritual music. Well folks, that's a little more of how I walk through the many fires here on earth in this lifetime that we all walk, limp, waddle and crawl through.

I wish and pray every good thing for each one of you precious people. Thank you so much for your inspiration, encouragement and support. The effort you put in to one another here on Connect is very, very special and very, very necessary! Thank you to Mayo Clinic and all of the volunteers and monitors as well.

Being a part of Connect is an honor! I have very limited time when I feel good enough to read and respond to the posts so I prayed that no one feels I don't care or, left out or offended if I don't respond or if I'm away from the blog for any prolonged periods of time. I think that is probably true for most of us here on connect.

Okay, you can wake up now, the novel is over! LOL! Sunny 🤗🙏🙃

Jump to this post

@sunnyflower @jimhd @rwinney @jesfactsmon and to all my lovely Neuropathy warriors.....Sunnyflower, Wow!!!! Your writing about God is an inspiration and utterly lovely! Jesus is really how you manage!!!!! I could tell everyone something that will make everyone here think that I am utterly insane, but here goes. I will just share. I am Jewish and firmly believe in God. I believe in all routes to God, no matter how a person gets there. When I am in my most deep pain, I sing prayers in Hebrew, and do not even know what I am singing, but these prayers calm me. Twice in my life, and I am not a crazy person, Jesus came to me, face to face. I swear by it, and I know it was him very clearly. I was in bed, and his face was as large as mine, face to face, and very close. I love Jesus dearly, but I do not exactly know what he is to me. I know he is there for me, for absolute certain. About fifteen years ago, he came and just smiled. I was so stricken, that I had to get counsel from a very dear Christian friend as to what to do about my love for Jesus. Well, he came back about two weeks ago, face to face. I knew it was him. I just sensed it with every cell in my being. I hope that the moderators of this Neuropathy group don't get after me for writing this, but Sunny, I was so touched by your writing that I had to share. Jesus is real. I know it. I am a Jewish woman who adores him. Just thought I would share. Please do not think I am insane. I am not. Love to all of you, Lori Renee

REPLY
3 replies
lorirenee1 | @lorirenee1 | Sep 2, 2020
In reply to @artscaping "@rwinney, I have had this hypothetical conclusion for some time now as I observe where the..." + (show)
@artscaping

@rwinney, I have had this hypothetical conclusion for some time now as I observe where the neuropathy pain starts and what it takes to stop it. I think about hanging face down in a sling over the hospital bed for several days with a concussion the size of an avocado on my head, and various scratches and pains here and there. When the neuro clinician visited, he was very concerned about the issues I would run into later in life. I was about 27 at the time and the future always seemed bright and full of joy. He told me to be very careful and to take care of my neck. He warned me that I needed to wear the neck brace so I wouldn't have to have neck surgery later. You guessed it.....I had neck surgery later.

I nodded to his comments and set up a faculty volley ball tournament as soon as he left the room. What do you call that? Stupid? Ignorant? Stubborn? All of the above?

When I see young people taking risks for themselves and others with COVID, I remember my arrogance and know-it-all attitude. I really didn't pay much attention to reality and did not honor medical knowledge.

And I know you want to know if I played volleyball the next week or so. Of course, I did. I was young and everything could be fixed.

Thanks for your kindness. 90% of this was just my own fault. 10% was also my fault but I didn't know it.
Good night...........
Chris

Jump to this post

@artscaping @rwinney Ah Chris! The ignorance and joy of youth!!!! Would you trade a thing you have done? Nah, probably not. Your memories of your past fill you with joy and passion. And reading your escapades is so heart warming. My love to you, lady. We pay for what we do, and sometimes, even when we do nothing bad, SHIT HAPPENS anyway. Right, Rachel???? Gotta go rest. Love, Lori Renee

REPLY
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