Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@kscott42

My name is Kenzie. I was diagnosed with fibromyalgia at 18, small fiber neuropathy & erythromyalgia at 31, and R/A at 34. Most recently, I am struggling with my sacral plexus nerve in my spine that goes down my leg to my foot and I am bedridden again at 42. It’s been 3 months so far. I had a nerve block that appears to be helping a little but not enough for me to walk yet.

I have so much frustration with the amount of awareness and research that is given to peripheral neuropathy and finding a cure. I tried to raise awareness when I was well, but people just don’t have any idea the amount of excruciating extreme torture most of us experience on a daily basis.

If there’s any one out there…..please help us!!

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Hello @kscott42, Welcome to Mayo Clinic Connect. I know it's difficult when you are pain and not finding something that helps. It's good that you are doing research and trying to learn as much as you can about your conditions. There is research being done but I'm sure it's taking a backseat under the current health crisis. There are a couple of good reference sites available if you don't already know about them.

Neuropathy Commons — https://neuropathycommons.org/
The Foundation for Peripheral Neuropathy — https://www.foundationforpn.org/

@jenniferhunter, @jimhd @rwinney and @artscaping may have some suggestions for you.

You mentioned struggling with your sacral plexus nerve, have you had a back injury?

Liked by Leonard

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@kscott42

My name is Kenzie. I was diagnosed with fibromyalgia at 18, small fiber neuropathy & erythromyalgia at 31, and R/A at 34. Most recently, I am struggling with my sacral plexus nerve in my spine that goes down my leg to my foot and I am bedridden again at 42. It’s been 3 months so far. I had a nerve block that appears to be helping a little but not enough for me to walk yet.

I have so much frustration with the amount of awareness and research that is given to peripheral neuropathy and finding a cure. I tried to raise awareness when I was well, but people just don’t have any idea the amount of excruciating extreme torture most of us experience on a daily basis.

If there’s any one out there…..please help us!!

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Hey Kenzie @kscott42. Welcome to Connect! Happy to have you join.

Given your story, I think this may be a good place for you to Connect with others who share your frustration, pain and concern for lack of peripheral neuropathy research. I'm right there with you on that.

I'm hanging on to my forties but, it's about to end and turn over to that "half century mark"! And you know what…I could care less about the # because I've got so many bigger fish to fry regarding my health and quality of life.

I've experienced several diagnosis, diseases and whole new perspectives on how to live with what life handed me. It sucks pretty bad on many a day. ☹

As far as suggestions…well, I've had my fair share of nerve blocks and RFA's. In your case, you have to do what you have to do in order to walk. You sound like a veteran of pain at a young age but, I will throw out some things that aid in my overall SFPN attack. Note that I can barely walk beyond 10 ft regardless, however, I feel that a small amount of each component contributes.

1. myofacial release
2. supplement regimen
3. warm to hot (if tolerable) bath/shower
4. topical relief cream/lotion/oil
5. healthy diet (reduce sugar/salt/processed food)
6. mild stretching (I can't excercise)
7. meditation and mindfulness
8. listening to my bodies needs and acting
9. heat/ice
10. balancing my capability of activity/rest

Then of course there are drugs…I need opiod therapy and anti seizure. Evenings I need medical marijuana or days also, when opiods aren't enough.

I'm done with injections and infusions. No game changer for me. So, now I think outside the box and am pending admittance to Mayo Pain Rehabilitation Program. Had my nurse interview today actually and she agrees that I have now gone into Central Sensitization. Another hurdle to jump but, hey at this point…what else can I do, but hopefully continue to gain knowledge.

I'm really sorry for your life challenges and hope that even just hearing about others griefs, helps a bit. It does for me when I'm really down. Always nice to know you are not alone.

I wish you well and please know that we are here for you. Comfort in numbers.
Rachel

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@kscott42

My name is Kenzie. I was diagnosed with fibromyalgia at 18, small fiber neuropathy & erythromyalgia at 31, and R/A at 34. Most recently, I am struggling with my sacral plexus nerve in my spine that goes down my leg to my foot and I am bedridden again at 42. It’s been 3 months so far. I had a nerve block that appears to be helping a little but not enough for me to walk yet.

I have so much frustration with the amount of awareness and research that is given to peripheral neuropathy and finding a cure. I tried to raise awareness when I was well, but people just don’t have any idea the amount of excruciating extreme torture most of us experience on a daily basis.

If there’s any one out there…..please help us!!

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@kscott42
PS: Thank you for attempting to raise awareness when you were able. I really have no clue how to generate awareness and push this disease to the forefront.

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@rwinney

@kscott42
PS: Thank you for attempting to raise awareness when you were able. I really have no clue how to generate awareness and push this disease to the forefront.

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Sorry, I just keep having thoughts on lacking research and urgency for peripheral neuropathy. It, for the most part, is an invisible disease which is not as prominent to reaction. It's human nature to react to a visual. I've witnessed first hand someone on crutches or with a cast getting immediate sympathy and recognition of pain over myself. My own husband responds more when my legs are fully wrapped in heat because he visualizes and reacts with empathy. The intense pain, burning, cramping, weakness, stabbing, electric shocks etc…is not typically seen externally by a stranger. Plus, for the most part, neuropathy is not a known killer, but a debilitater. Game changer!
This is only my opinion.
Rachel

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@rwinney

Sorry, I just keep having thoughts on lacking research and urgency for peripheral neuropathy. It, for the most part, is an invisible disease which is not as prominent to reaction. It's human nature to react to a visual. I've witnessed first hand someone on crutches or with a cast getting immediate sympathy and recognition of pain over myself. My own husband responds more when my legs are fully wrapped in heat because he visualizes and reacts with empathy. The intense pain, burning, cramping, weakness, stabbing, electric shocks etc…is not typically seen externally by a stranger. Plus, for the most part, neuropathy is not a known killer, but a debilitater. Game changer!
This is only my opinion.
Rachel

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Very well put I share your pain
Take care

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@rwinney

Sorry, I just keep having thoughts on lacking research and urgency for peripheral neuropathy. It, for the most part, is an invisible disease which is not as prominent to reaction. It's human nature to react to a visual. I've witnessed first hand someone on crutches or with a cast getting immediate sympathy and recognition of pain over myself. My own husband responds more when my legs are fully wrapped in heat because he visualizes and reacts with empathy. The intense pain, burning, cramping, weakness, stabbing, electric shocks etc…is not typically seen externally by a stranger. Plus, for the most part, neuropathy is not a known killer, but a debilitater. Game changer!
This is only my opinion.
Rachel

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@rwinney Rachel, you are so right. My mom in law, God rest her soul, got livid when people used handicapped parking who were not in wheel chairs. If she could not see it, it didn't exist. She had MS, and used a walker. I used to try to reason with her that not all illness can be seen, but it was like talking to a wall. My mom had severe emphysema, and needed handicapped parking to get immediately into air conditioning, so that she could breathe! Some people lack empathy, intelligence,…..so many things. What amazes me is that there really are no drugs specifically for nerve damage. But my neurologist said, "nerves are very smart, and very hard to deal with!!!!" Who knows. I know that I am willing to try everything and anything not to hurt. Sometimes I try to keep my feet really still, because if I don't move them, some of the horrid senses that I feel, can't be felt. I do whatever helps. I would put mustard on them, if it helped. And if handicapped parking helps, people need to use them. I think we need to practice forgiveness from lack of empathy, idiocy, whatever….A forgiving heart can be peaceful…..Lori Renee

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@lorirenee1 Wow! Very well stated, great example too. I'm glad you weighed in.

You made me laugh about mustard! 😂🤣😂
My body goes dormant quite often like your feet and I don't move. Almost like a my limbs fall heavy and dead. It's in order to avoid more pain. I hate to compare to paralysis but, a very distant friend.

Liked by Leonard, lorirenee1

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@notborntoburn

Very well put I share your pain
Take care

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@notborntoburn ⚘🌷⚘

Liked by Leonard

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@lorirenee1

@rwinney Rachel, you are so right. My mom in law, God rest her soul, got livid when people used handicapped parking who were not in wheel chairs. If she could not see it, it didn't exist. She had MS, and used a walker. I used to try to reason with her that not all illness can be seen, but it was like talking to a wall. My mom had severe emphysema, and needed handicapped parking to get immediately into air conditioning, so that she could breathe! Some people lack empathy, intelligence,…..so many things. What amazes me is that there really are no drugs specifically for nerve damage. But my neurologist said, "nerves are very smart, and very hard to deal with!!!!" Who knows. I know that I am willing to try everything and anything not to hurt. Sometimes I try to keep my feet really still, because if I don't move them, some of the horrid senses that I feel, can't be felt. I do whatever helps. I would put mustard on them, if it helped. And if handicapped parking helps, people need to use them. I think we need to practice forgiveness from lack of empathy, idiocy, whatever….A forgiving heart can be peaceful…..Lori Renee

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@lorirenee1

I suppose that people see me getting out of my car that's in a handicap space and think I shouldn't park there. But I'm really glad I have a placard, especially when my feet are hurting. Any steps saved help me make it into a store and at least grab the things on my list. I used to enjoy browsing through stores, usually outshopping my wife, but I don't do that anymore – too painful. I'm a little less critical when I see healthy looking people using a handicap space. I remind myself that lots of disabilities aren't visible.

Jim

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Agree

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@jimhd

@lorirenee1

I suppose that people see me getting out of my car that's in a handicap space and think I shouldn't park there. But I'm really glad I have a placard, especially when my feet are hurting. Any steps saved help me make it into a store and at least grab the things on my list. I used to enjoy browsing through stores, usually outshopping my wife, but I don't do that anymore – too painful. I'm a little less critical when I see healthy looking people using a handicap space. I remind myself that lots of disabilities aren't visible.

Jim

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Along the lines of not judging a book by its cover.

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I don't mean to change up but I did not know where to ask. Does anyone have any tips on dealing with the numbness. My legs from the knees down are numb. So numb it is scary. I am a member of this group and have neuropathy. The numbness and heaviness are really doing a job on me mentally and physically.

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@summertime4

I don't mean to change up but I did not know where to ask. Does anyone have any tips on dealing with the numbness. My legs from the knees down are numb. So numb it is scary. I am a member of this group and have neuropathy. The numbness and heaviness are really doing a job on me mentally and physically.

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Hello @summertime4. I only have intermittent numbness. The one thing I believe is good are myofascial release, massage, heat and stim to help generate blood flow and stimulate nerves. I believe @johnbishop lives daily with numbness in his feet and I'm sure he will offer what may work for him, if anything. How horrible to have to live with. Best wishes.
Rachel

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@twinny Thank you for your reply. Yes, I do remember john having the numbness. I will go after him. Well you know what I mean. ha ha

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@summertime4

@twinny Thank you for your reply. Yes, I do remember john having the numbness. I will go after him. Well you know what I mean. ha ha

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👍🏼

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