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.

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.

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@okaynowwhat I'm so sorry, that's such a long time to be in so much pain. I'm glad you found something that gives you some relief.

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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 thank you!

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Profile picture for tomlamanna @tomlamanna

@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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@tomlamanna I can absolutely relate and I'm so sorry!

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Profile picture for tomlamanna @tomlamanna

Pain all the time…..!!!

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@tomlamanna I would like to add my welcome to Connect along with @crazycatlady4110 and others. All I can add is take it one day at a time, never give up looking for something that might provide some relief for the pain and keep learning as much as you can about your neuropathy condition. Besides all of the different discussions here in the Connect Neuropathy Support Group - https://connect.mayoclinic.org/group/neuropathy/, the Foundation for Peripheral Neuropathy has a lot of great information - https://www.foundationforpn.org/living-well/.

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I wonder if anyone on this site has had success with a pain management program?

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Profile picture for tomlamanna @tomlamanna

@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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@tomlamanna
I’m really sorry. Gabapentin helped me in a huge way too but of course every person has a different body and different reactions to medications and therapies. I take a LOT of gabapentin but it lets me live a halfway decent life so even though I may get dementia I have to hope there’s better treatments for that when I get older (I’m 59 now). I’ve had SFN for almost 20 years and I just keep trying stuff as it becomes available. The neurostimulator that I’m trying at the moment helps, it’s not 100% but it’s a little bit better. I’m very fortunate to have great Pain Medicine doctors that help me. I hope you can find something similar. I also think that my sort of baseline setting is as an optimist. I lose it from time to time but when I find my way back to hope and optimism I’m a happier person. I really don’t mean that to sound preachy, it’s just an explanation of *my* situation and personal experience. I wish you the very best!

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Profile picture for thomasmichael @thomasmichael

I wonder if anyone on this site has had success with a pain management program?

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@thomasmichael, There are a couple of discussions where members have shared about the pain rehabilitation center that might be helpful.
-- Anyone with CRPS been to Mayo Pain Rehabilitation Centers?
https://connect.mayoclinic.org/discussion/anyone-with-crps-been-to-mayo-pain-rehabilitation-centers/
-- Anyone had a successful experience w/ Mayo Pain Rehabilitation Center?
https://connect.mayoclinic.org/discussion/has-anyone-successful-experience-with-mayo-pain-rehabilitation-center/

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Profile picture for crazycatlady4110 @crazycatlady4110

@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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@crazycatlady4110 Halloween kitties, my favorite.

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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
Sometimes the nerves die, as in my case, so one gets some numbness and the wobblies, but little pain,
Sometimes the nerve sheath dies so the nerve is exposed. That's when it's bad.

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