How does everyone cope on a daily basis??

Posted by crazycatlady4110 @crazycatlady4110, 4 days ago

Some days the pain is so bad I want to cut off my feet and hands. Sometimes I cry, sometimes I deal, sometimes I wish I wasn't here anymore so I wouldn't have to deal. I've tried meditation, Qigong, feet exercises, nothing ever works or even lessens the pain. I pray, but I don't God is listening anymore. I'm just curious what you all do to cope if/when you have days when you feel this way? Sorry to be a downer. Thanks for listening.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Sorry to say it but they have all lied to us about “dead” nerves no longer causing pain. That was just a complete load of crap. I have had neuropathy (IPPN) for about 30 years at best guess. Neuropathy below the knee in both legs. Without Cymbalta & medical pot I would likely be in jail just for being a complete jerk. Medical pot (Indica) became necessary once neuropathy started attacking my autonomic nerves & the Gabapentin side effects latched onto those attacks & became horrible.

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@crazycatlady4110, You are most definitely not alone and it's OK to share how it makes you feel. Thought you might like to scan through what other members have shared for "coping with neuropathy". Here's a search link that lists the different discussions and comments from other members on coping - https://connect.mayoclinic.org/search/?search=coping+with+neuropathy.

Hoping you find some relief soon.

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Profile picture for John, Volunteer Mentor @johnbishop

@crazycatlady4110, You are most definitely not alone and it's OK to share how it makes you feel. Thought you might like to scan through what other members have shared for "coping with neuropathy". Here's a search link that lists the different discussions and comments from other members on coping - https://connect.mayoclinic.org/search/?search=coping+with+neuropathy.

Hoping you find some relief soon.

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@johnbishop thank you.

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We all have bad days where we feel the same way that you do, so you're not alone here. I've been dealing with osteoarthritis and idiopathic neuropathy for over 10 years, so I can definitely relate to your situation. I'm currently taking the maximum dosage of gabapentin that should be prescribed every day, 3600mg, along with 1200mg of Alpha Lipoic Acid. On most days, it only dulls the pain in my feet, and some days are worse. The pain is always there.
To help me deal with all of my chronic pain, I listen to music for several hours a day. I've also started building model cars again after stopping for 45 years to help take my mind off of my situation.
Judging by your avatar, can I assume you have at least one kitty cat to keep you company? I've had cats during most of my life, they're great companions. We don't currently have one because our lease says no pets, so I have to get my kitty fix whenever we visit our son and his family, they have a pair of them.
Find something that puts a smile on your face, and continue to do it. When that no longer works, pet/play with your cat(s).

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Profile picture for mrmacabre @mrmacabre

We all have bad days where we feel the same way that you do, so you're not alone here. I've been dealing with osteoarthritis and idiopathic neuropathy for over 10 years, so I can definitely relate to your situation. I'm currently taking the maximum dosage of gabapentin that should be prescribed every day, 3600mg, along with 1200mg of Alpha Lipoic Acid. On most days, it only dulls the pain in my feet, and some days are worse. The pain is always there.
To help me deal with all of my chronic pain, I listen to music for several hours a day. I've also started building model cars again after stopping for 45 years to help take my mind off of my situation.
Judging by your avatar, can I assume you have at least one kitty cat to keep you company? I've had cats during most of my life, they're great companions. We don't currently have one because our lease says no pets, so I have to get my kitty fix whenever we visit our son and his family, they have a pair of them.
Find something that puts a smile on your face, and continue to do it. When that no longer works, pet/play with your cat(s).

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@mrmacabre thank you so much, I really appreciate it! I'm so sorry for you or anyone who has to deal with this horrible monster or any debilitating pain!! I recently retired, I thought less commuting/moving around/being stressed might help. It has helped in a lot of ways, but not with the pain. I went whole food plant based about 13 weeks ago, which I love! When I can, I cook new recipes, which I really enjoy. I had hoped eating this way might help. While it has helped in many ways, lessening the pain isn't one of them. 😭 I'm learning Italian for fun. I do chair workouts 4 days a week, more when I'm able. I meditate, listen to paralimenals and spend time daily with my Lord and Savior. I have 8 cats who are very excited I am home more often ( I think! Lol!) I have a good life and I'm very grateful and blessed for it. But NOTHING gets rid of this pain, not even the 1800 mg daily (sometimes more) of gabapentin. I've not heard of alpha lipoic acid, I'll look into that. I have an FNP who doesn't take me seriously, he gave me gabapentin and tried to put me on a weight loss drug. He thinks losing weight is some kind of magic for anything I've got wrong. Well I've lost 36 pounds since eating whole food plant based and nothing has changed pain wise. Thank you again for your response!! And thank you for listening! Sorry this is so long! It's nice to talk to people who understand, I'm just sorry we all have to go through any of it. ❤️ P.S. I don't know if I'll be allowed to attach all these pics, but these are 6 plus the 2 on my avatar. 😻

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I’m sorry you’re having such a rough time. As many others have said, I can relate too. I can share some things that help me but I think every body is different and what helps me might do nothing for you.
I do meditate every morning. I use the Happier app that was originally started by Dan Harris but is now separate from his work. I particularly like the meditations that are geared towards chronic pain and anxiety but there are so many good one to choose from. Joseph Goldstein’s courses are the best.
I exercise regularly even if I don’t feel like it. I do a water fitness class 3/week in the warm water therapy pool and it feels really good and I have found a nice community of friends there.
When I can I like to go for walks in the woods. The softness of a trail path is much kinder to my feet and joints than the pavement is. Time in nature always feels wonderful to me.
Lastly, never quit trying. I am currently going through a trial for a neurostimulator implant and I’m getting a bit of relief.
Hang in there and always reach out when you’re struggling!!

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Profile picture for Okay Now What @okaynowwhat

Sorry to say it but they have all lied to us about “dead” nerves no longer causing pain. That was just a complete load of crap. I have had neuropathy (IPPN) for about 30 years at best guess. Neuropathy below the knee in both legs. Without Cymbalta & medical pot I would likely be in jail just for being a complete jerk. Medical pot (Indica) became necessary once neuropathy started attacking my autonomic nerves & the Gabapentin side effects latched onto those attacks & became horrible.

Jump to this post

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What I don’t understand is why so many have serious pain issues and I don’t have any pain. I have PN now for years without pain, just numbness and weakness. Balance is not great. The medical profession can only drug people as there is no cure for PN.

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Profile picture for laurenthewise1 @laurenthewise1

I’m sorry you’re having such a rough time. As many others have said, I can relate too. I can share some things that help me but I think every body is different and what helps me might do nothing for you.
I do meditate every morning. I use the Happier app that was originally started by Dan Harris but is now separate from his work. I particularly like the meditations that are geared towards chronic pain and anxiety but there are so many good one to choose from. Joseph Goldstein’s courses are the best.
I exercise regularly even if I don’t feel like it. I do a water fitness class 3/week in the warm water therapy pool and it feels really good and I have found a nice community of friends there.
When I can I like to go for walks in the woods. The softness of a trail path is much kinder to my feet and joints than the pavement is. Time in nature always feels wonderful to me.
Lastly, never quit trying. I am currently going through a trial for a neurostimulator implant and I’m getting a bit of relief.
Hang in there and always reach out when you’re struggling!!

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@laurenthewise1. I’ve tried everything that you said you do. Nothing has worked. I’m in pain from the time. I open my eyes to the time I show them at night.

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Profile picture for cit10jetjockey @cit10jetjockey

What I don’t understand is why so many have serious pain issues and I don’t have any pain. I have PN now for years without pain, just numbness and weakness. Balance is not great. The medical profession can only drug people as there is no cure for PN.

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@cit10jetjockey glad for you that you have no pain.

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