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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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?

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

Leonard | @jakedduck1 | Apr 13 12:01pm

@harley22
Sorry to hear of all your going through.
No, it's definitely not easy. Your condition sounds worse than mine. It would be nice if researchers could make it better but even if they do I’ll most likely be gone. I don't use any assistive devices. I had a walker but fell in it so I take my chances without any aids.
I often wish I had the pain instead of these complications. I don't want to be negative but I think it will continue to progress, what next?
Take care,
Jake

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Leonard | @jakedduck1 | Apr 13 12:23pm

@harley22
Actually, Gabapentin bothered me very little if at all regarding drowsiness but I take other seizure meds so how much each one affects me is hard to know. I took 3600 mg that was primarily given to me to help seizures with a hope of also helping my neuropathy. However, it didn't help either one so I stopped it. But drowsiness is a very common side effect as are balance issues. I don't understand why so many people take seizure medication for sleep. I would prefer to stay awake, which I usually do.
Jake

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julbpat | @julbpat | Apr 14 7:06am
In reply to @scout227 "IS RED LIGHT THERAPHY RECOMMENDED FOR NON-DIABETIC NEUROPATHY?" + (show)
@scout227

IS RED LIGHT THERAPHY RECOMMENDED FOR NON-DIABETIC NEUROPATHY?

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I don’t know if it’s recommended per se, but I’ve found that it helps with the muscle knots, or trigger points, that I develop constantly. I bought a hand-held one from Amazon on the advice of my physical therapist. I’ve been so pleased with the results that I just ordered a wrap style. The knots always return, but I can reduce the pain in between PT and dry needling sessions.
This is one item where price matters. You want the more expensive product, not the $40 one. Read the product descriptions or ask a PT for recommendations.

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chaftim | @chaftim | Apr 14 9:38am

I have Chronic Peripheral Neuropathy from being induced into a coma during my Covid 19 hospital stay.

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1 reply
suetex | @suetex | Apr 14 10:29am
In reply to @sszymczak "I'm Steve. My neurologist says I have peripheral neuropathy (non-diabetic) I use a walker for balance...." + (show)
@sszymczak

I'm Steve. My neurologist says I have peripheral neuropathy (non-diabetic) I use a walker for balance. I have Crohn"s disease which is an autoimmune disease. Over the last several months it seems to have gotten worse ad has affected my fingers noticeably. Also my vision has worsened (like I have a sheet over my head blocking the light). As well, my speech is slurred (no stroke or anything related). I also drool quite a lot. I don't have chronic pain, but sometimes I take a gabapentin at night for acute "shooting" pain in my feet.

I've been told by my doctor that "it is what it is" and that there is no cure. I can live with that, but almost every day I receive or see something on "a cure for neuropathy". Maybe because "misery loves company" I'm reaching out to see what others experience. I look forward to seeing any response. Thank you, Steve

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Please find a new Dr. Hopefully one that has experience with Sjogren's Syndome, rituximab treatments, and Low Dose Naltrexone. And all means, educate yourself so you know all you can. As someone with Crohn's, Sjogren's SFN and MDS (and BTW: glaucoma) I would not accept that from a Dr. "It is what it is!" is not a stance I am willing to accept. PubMed papers are a good place to start. You may feel lost at first but look up words you don't know and go from there. Best wishes.

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Mentor
John, Volunteer Mentor | @johnbishop | Apr 14 12:38pm
In reply to @chaftim "I have Chronic Peripheral Neuropathy from being induced into a coma during my Covid 19 hospital..." + (show)
@chaftim

I have Chronic Peripheral Neuropathy from being induced into a coma during my Covid 19 hospital stay.

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Welcome @chaftim, I'm sorry to hear you developed neuropathy while being treated for Covid 19. That must be terribly frustrating to say the least. Can you share a little more about your symptoms and diagnosis since you were released from the hospital?

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brotherchuckles80 | @brotherchuckles80 | Apr 14 3:53pm
In reply to @sszymczak "I'm Steve. My neurologist says I have peripheral neuropathy (non-diabetic) I use a walker for balance...." + (show)
@sszymczak

I'm Steve. My neurologist says I have peripheral neuropathy (non-diabetic) I use a walker for balance. I have Crohn"s disease which is an autoimmune disease. Over the last several months it seems to have gotten worse ad has affected my fingers noticeably. Also my vision has worsened (like I have a sheet over my head blocking the light). As well, my speech is slurred (no stroke or anything related). I also drool quite a lot. I don't have chronic pain, but sometimes I take a gabapentin at night for acute "shooting" pain in my feet.

I've been told by my doctor that "it is what it is" and that there is no cure. I can live with that, but almost every day I receive or see something on "a cure for neuropathy". Maybe because "misery loves company" I'm reaching out to see what others experience. I look forward to seeing any response. Thank you, Steve

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Your doctor is correct; there is no cure for neuropathy. I don't if your doctor was a neurologist but my neurologist used the exact same words. Perhaps some folks have found help with some treatments but there is no cure, sorry to say. God bless you Steve.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Apr 15 3:18am
In reply to @sszymczak "I'm Steve. My neurologist says I have peripheral neuropathy (non-diabetic) I use a walker for balance...." + (show)
@sszymczak

I'm Steve. My neurologist says I have peripheral neuropathy (non-diabetic) I use a walker for balance. I have Crohn"s disease which is an autoimmune disease. Over the last several months it seems to have gotten worse ad has affected my fingers noticeably. Also my vision has worsened (like I have a sheet over my head blocking the light). As well, my speech is slurred (no stroke or anything related). I also drool quite a lot. I don't have chronic pain, but sometimes I take a gabapentin at night for acute "shooting" pain in my feet.

I've been told by my doctor that "it is what it is" and that there is no cure. I can live with that, but almost every day I receive or see something on "a cure for neuropathy". Maybe because "misery loves company" I'm reaching out to see what others experience. I look forward to seeing any response. Thank you, Steve

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Good evening, @sszymczak. Welcome to Connect. You are in the right place if PN is your challenge. SPN (small fiber neuropathy happens to control my life right now. You are also correct that there is no cure. However, we all seem to spend much time hunting for supportive solutions. I also have those acute "shooting" pains in my feet. However, they are relatively new, and I struggle to find the best way to control them. So far, I have increased my "foot time" to twice a week during my MFR sessions. I have also added a Yoga stretch called "Legs up the wall." That is very helpful as part of my wake-up routine in the morning.

During the day, I wiggle my toes while sitting and make sure my feet will support me when I stand. At certain times when the barometric pressure is low, I use medical cannabis to ensure restful sleep.

I think you will find the following sites helpful..
https://www.foundationforpn.org/
https://neuropathycommons.org/

Please tell me a bit more about your slurred speech. Does that happen when you first wake up or have pain somewhere in your body?

May you be safe, protected, and free of inner and outer harm.
Chris

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glenner075 | @glenner075 | Apr 15 12:19pm

I’m Glenn Larkin from Salt Lake City, Utah . I’m 81 years of age and have had Neuropothy for 3 years . I experience numnesss in my toes and balls of my feet. Also increasing pain in those same regions at night time. Would love to find a treatment to both. Do take a lot of meds for other issues. Thanks

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Apr 15 2:30pm
In reply to @glenner075 "I’m Glenn Larkin from Salt Lake City, Utah . I’m 81 years of age and have..." + (show)
@glenner075

I’m Glenn Larkin from Salt Lake City, Utah . I’m 81 years of age and have had Neuropothy for 3 years . I experience numnesss in my toes and balls of my feet. Also increasing pain in those same regions at night time. Would love to find a treatment to both. Do take a lot of meds for other issues. Thanks

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Hi Glen @glenner075, There is another discussion where members are discussing what helps neuropathy pain at night that you might find some suggestions for treatments that help.

--- Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/

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