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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@LeeAase Hi Lee, 36 hours does sound like a long time. Good to know, thank you. I never had a bad batch. It takes practice to perfect the method. When I made my yogurt in a gallon sized bowl with a lid, I used the warmth of my garage while the sun was still out. After about 8 hours the curdled milk was ready to strain through a cheese cloth. So within a day my yogurt was ready. Luckily, I never had left the milk over night. I was afraid for it to turn into cheese which I do not like at all. As I was growing up, my dad made cheese from scratch using the milk from our goats. I disliked the smell. Thanks again Lee. Do you grow bacteria for bread too? Toni

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@johnbishop

@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 @ johnbishop. @rwinney if the feet part of my sciatica is acting up I use my TENS unit on my feet and ice my butt/hamstring As a last resort 1/2 to 1 pain pill. Sometimes nothing stops the pain but a pill unfortunately. I have also started practicing the McKenzie method of stretching as often as I can again all day long. It sucks no doubt I need the support of this group.

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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 Hello there. I see @johnbishop gave you some advice. He's so good at that!

Deep sighhh...I rack my brains about this disease. Your question of, "Why at night?". Well, why when we are sick, since being a small child, does it feel worse at night? I've concluded that our bodies are wired as such. Like a clock. I believe the body's clock winds down for intended evening calmness, only with disease and illness, our purpose of calmness is defeated by pain and discomfort heightening as our worlds become quite, and distraction settles.

It's no great answer but, is a great question. Now, what can we do about it? Magnesium, natural sleep aids, CBD oil, medical marijuana, calming nerve creams, epsom salt soaks. Maybe heat, maybe ice? Perhaps a blanket lifter for bed in case there is friction on your feet from the covers. Do you have a partner who can massage your feet? Are you able to attend physical therapy for myofascial release to get your feet circulating better?

We are all spinning our wheels out here and are all so very different in our pain structure, what works or doesn't work for us. I'm deeply sorry for your pain and you are certainly not alone in foot pain. Many members like @jimhd and @lorirenee1 can vouch for terrible, make you want to cry, foot pain.

I'm glad you posted about your frustration and pain. We are here for you. We'll all keep being neuropathy warriors and lift each other up with ideas for comfort and support.

Many good wishes sent your way for relief and comfort. 💕
Rachel

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@bustrbrwn22

@summertime4 @ johnbishop. @rwinney if the feet part of my sciatica is acting up I use my TENS unit on my feet and ice my butt/hamstring As a last resort 1/2 to 1 pain pill. Sometimes nothing stops the pain but a pill unfortunately. I have also started practicing the McKenzie method of stretching as often as I can again all day long. It sucks no doubt I need the support of this group.

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@bustrbrwn22 Great advice here!

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@helennicola

Hi Toni, sorry if you misunderstood, I had a frozen shoulder 20 years ago which after 1 yr. resolved on its own after trying P/T unsuccessfully. My ortho does not know what caused my bursitis after ruling out the usual suspects so I can’t really change anything hence the last choice of a steroid injection. Helen

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Hi Helen, sorry I did misunderstand you. Thanks for pointing that out. I am glad the frozen shoulder resolved on its own. It takes a while. It makes sense to stop the cause. I feel why do the drugs if you don’t have to. The body puts out pain signals to let you know there is a problem so why take medications to mask the pain to allow more usage. I agree, PT may not always help but worth a try. Knowing I have tried it at times and was unsuccessful, gave me a peace of mind to move on and try something else as you will do. In the mean time does heat or ice help with the pain? Remember, heat allows blood flow to the affected area while ice constricts the blood flow. Best of luck to you. Toni

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My peripheral neuropathy was probably caused by chemo drug like Taxol
I’ve finished chemo therapy a year ago Sept 2019 but experience numbness, leg and feet fatigue
NO pain so elect to take no meds like Gabapentin

I’m doing many things like vitamins , exercise and healthy foods . I know some nerve damage dirs not
Regenerate or reverse but I understand that some never will regenerate .

If so does anyone one Have a psibld time frame ?
Not sure if severity but I don’t have pain and can sleep
The fatigue and numbness is there and want to know how to improve & does it improve as it’s been a year after the chemo /radiation toxins

All input is appreciated Norma Zick

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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 Do you have access to THC in the form of either marijuana, medical marijuana or CBD oil? These can be of very significant help if other things are not working, and for some people (not all, my wife says they stimulate her) they help them to go to sleep. Also, have you explored kratom at all. It can be expensive and might not work for you, but some here (like @lorirenee1 ) do get benefits. My wife Linda's feet are definitely worse at night too. Her before bed protocol is to put her feet into very hot water, then apply Penetrex. Or if itchy, Aveeno. Also, now, the magnesium. She is getting to sleep of late. She ALWAYS has a fan blowing on her feet, BTW.

I wish you well, Hank

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@normazick

My peripheral neuropathy was probably caused by chemo drug like Taxol
I’ve finished chemo therapy a year ago Sept 2019 but experience numbness, leg and feet fatigue
NO pain so elect to take no meds like Gabapentin

I’m doing many things like vitamins , exercise and healthy foods . I know some nerve damage dirs not
Regenerate or reverse but I understand that some never will regenerate .

If so does anyone one Have a psibld time frame ?
Not sure if severity but I don’t have pain and can sleep
The fatigue and numbness is there and want to know how to improve & does it improve as it’s been a year after the chemo /radiation toxins

All input is appreciated Norma Zick

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@normazick Hi Norma, welcome to Connect. My wife got neuropathy in her feet in 2014 as a result of chemo also. She hoped it would improve but it actually has gotten progressively worse, especially the last year and a half. Yours is recent enough (1 year) that you might get better. It's very good that you do not experience pain. All symptoms, including numbness, are a drag, but I believe severe pain is the least preferable. @johnbishop started a discussion recently for people who have numbness w.o. pain. Here is the link:
https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
Please stay abresat of the neuropathy discussions here, they are immeasurably helpful, and post often, everyone here is uber kind as well as interested in YOU.
Best to you and I hope you get better. Hank

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@jesfactsmon

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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Thanks Hank. The doctor thinks it is now poly neuropathy but I have not gone for the tests. I have been in the house since March 17th when the cardiologist and the vascular surgeon insisted I stay inside and that this Covid is real and dangerous. Three of my neighbors have had the virus and one is still in the hospital. Six of my facebook friends have passed too. Take care and stay safe.

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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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Hi Betty @hazelnut Sorry for your pain. In trying to resolve one you ended up with another. As for a cure for nerve damage, it would depend on the cause and location. It is always best to ask your doctor for advise. Everyone is different. Doing your own research will prepare you to ask your doctor relevant questions. Best wishes Toni

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