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?

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

@LeeAase

I've had better results by cutting my yogurt making time to 18-24 hours instead of 36. I had gotten a couple of bad batches with the longer time, but since I cut back to under 24 hours I haven't had any problems.

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Thanks Lee! I will give it a try on my next batch and try to remember to start checking it at 14 hours just to make sure. I really do think it goes great with fresh fruit as a dessert for my last meal of the day.

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@sunnyflower

@jimhd. Hi. Do you have a pet/service animal? I'm thinking you probably already do, but just in case, I thought I'd ask. I know so many, including a family member, have them and their lives have improved dramatically.
All my best, Sunnyflower

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@sunnyflower

My service dog, Sadie, is my avatar. She's a psychiatric service dog, for depression/anxiety and PTSD. She's my second one.

Jim

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@bustrbrwn22 @sunnyflower @avmcbellar @helennicola @hazelnut

Well, since this discussion is about neuropathy, I'll just say that I wish there were an injection for pn. My wife and I have both had cortisone shots for multiple pains. But I do take a low dose of Prednisone, 10mg, prescribed by my neurologist in hopes that it will slow the progression of sfpn in my feet and ankles, numbness in fingers. I don't think it will have any effect on my AN. When I had my flu shot last week, the pharmacist warned me about risk of infection when taking prednisone. I guess sometimes we have to weigh the risks against the benefits of medications.

Jim

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@hazelnut

I had a ultra sound guided steroid injection for the arthritis in my hip. The rhuemologist must have erred as my leg jumped off the table during the procedure and since that injection I have unbearable pain. The neurologist believes it also polyneuropathy but haven't had tests done for that. I did have the EKG that shows nerve damage. I am on 2400 mg. of Gabapetine and on a regular basis I am in pain that comes and goes. Is there a cure for nerve damage?

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@hazelnut Hi Betty. I'm sorry, but no, there is not a cure for neuropathy. There is hope in managing symptoms which may come from lifestyle change, vitamins and supplements, diet, exercise, cognitive behavioral therapy, physical therapy, etc...
and of course medications.

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@rwinney

@hazelnut Hi Betty. I'm sorry, but no, there is not a cure for neuropathy. There is hope in managing symptoms which may come from lifestyle change, vitamins and supplements, diet, exercise, cognitive behavioral therapy, physical therapy, etc...
and of course medications.

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Thank you for your reply. I never had a problem with the nerves until I had that misguided steroid shot. My open heart surgery was less painful than this. Thanks again for your reply. Have a Blessed Sunday.

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@hazelnut

Thank you for your reply. I never had a problem with the nerves until I had that misguided steroid shot. My open heart surgery was less painful than this. Thanks again for your reply. Have a Blessed Sunday.

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Wow, when I read all the myriad ways people can get peripheral neuropathy it almost seems like a person is playing Russian Roulette with their life by even doing something so simple as getting a shot. Yikes! @hazelnut I am terribly sorry that this happened to you. Hank

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@bustrbrwn22

@avmcbellar @jesfactsmon Success!!! A full nights sleep with the magnesium. We’ll see what tonight brings. I have myofascial therapy at 4 pm CST today so I am curious to see how I feel after. My pain level is only at a 6 right now.

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Hi, a word about magnesium. I would not have thought of it as being a sedative but the experience Linda and I have both had the past 3 days seem to indicate that it is. The past two or three days, without realizing it, Linda has taken 3 caps/day (= 480 mg), while intending to be taking only 2 (= 320 mg). She had an extra one in her pill box she thought she had taken out but hadn't. It's been like she has narcolepsy the last two days, she has been sleeping/dozing through most of the day while also sleeping through the night. For me, taking an extra 200 mg at night, 40 min. before turning in, I have slept great! Better than before. No more tossing/turning the first hour. But No daytime issue with sleepiness with me. So far I am very happy with taking added magnesium.

Just FYI, magnesium seems like a good sleep aid so far, but be careful not to take too much. Best, Hank

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@rwinney I want a cure for neuropathy I know there is no cure and our life style has to change. Some for the good, some for the bad. I dont like having to bring a cane to an event or not being sble to get out of the pool. The pain is taking it;s toll. Nights are the worse. My feet become so painful I could cry. Why at night? I put them up, then down and nothing works. I am hearing about magnesium and that it benefits seep. I of course bought some. How much should I take and do I take it at night. Does anyone have the awful pain in their feet?

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@summertime4

@rwinney I want a cure for neuropathy I know there is no cure and our life style has to change. Some for the good, some for the bad. I dont like having to bring a cane to an event or not being sble to get out of the pool. The pain is taking it;s toll. Nights are the worse. My feet become so painful I could cry. Why at night? I put them up, then down and nothing works. I am hearing about magnesium and that it benefits seep. I of course bought some. How much should I take and do I take it at night. Does anyone have the awful pain in their feet?

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@summertime4, Sorry to hear you are having the neuropathy pain more at night. I would discuss supplements including magnesium with your doctor. I'm no medical expert but they probably will not help if your body is not deficient in the vitamin/mineral you are taking to see if it helps. That said, I have used magnesium lotions in the past on my legs and it did seem to have a calming effect (and it smells good too). The particular brand I tried was recommended to me by another member a few years ago was LifeFlo but I'm sure other brands are probably as good. I also tried the spray version of the magnesium lotion and for me it was awful because it felt sticky and was like spraying sticky oil on my legs. Hopefully some other members will have some suggestions for the pain in your feet at night.

Do you take any medications for your neuropathy? You could discuss splitting the dosage between morning and evening with your doctor or maybe an extra dosage at night to see if it helps with the night time pain.

Here are a few links with some ideas for you. If you also love sweets, sugary stuff, that along with alcohol are a no no if you have PN. They will add to any misery and pain you have.

-- How to treat peripheral neuropathy naturally: https://www.medicalnewstoday.com/articles/326779
-- 8 Easy Home Remedies for Peripheral Neuropathy Relief: https://modernneuropathy.com/8-easy-home-remedies-for-peripheral-neuropathy-relief/

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@summertime4

@rwinney I want a cure for neuropathy I know there is no cure and our life style has to change. Some for the good, some for the bad. I dont like having to bring a cane to an event or not being sble to get out of the pool. The pain is taking it;s toll. Nights are the worse. My feet become so painful I could cry. Why at night? I put them up, then down and nothing works. I am hearing about magnesium and that it benefits seep. I of course bought some. How much should I take and do I take it at night. Does anyone have the awful pain in their feet?

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My 3rd night with 250 mg of magnesium and a great night’s sleep (except for a text message that wove I to my dream at midnight). I didn’t have to use the restroom as usual with my IC. I’ve read it has to be that specific one of the 2 types mine has both magnesium oxide and stearate (?)

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