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?

@michelewithonel

yes, I have been to the Mayo Clinic once. They did all the same tests that I have had before. I will be going back to have a 3 tesla MRI with flexion of my neck and a lumbar puncture.

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I’m hoping your doc “House” was the one who ordered the 3 tesla MRI and it will lead to finding out how to help you. Thanks for keeping us updated.

John

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Would like to know how I can continue to live with the extreme Pain attacks of my neuropathy, worst time is when I lay down, what meds do I need?

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@teacup

Would like to know how I can continue to live with the extreme Pain attacks of my neuropathy, worst time is when I lay down, what meds do I need?

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@teacup – the first thing you need is a good neurologist. There’s a mighty long list of medications and treatments for neuropathy, as well as various diagnoses. Let me know what you learn from the neurologist.

How do you know you have neuropathy? Have you tried any medications? I suffer with a lot of peripheral neuropathy pain, so I sympathize with how you feel. I’ve tried every medication for neuropathy pain that’s available, and some that aren’t usually used for pn, and I had a spinal cord stimulator implant in June. It helped a lot, but my feet hurt still, and I keep finding that other problems I have are probably neuropathy related. It’s a tough disease. I hope you find some relief soon.

Jim

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@teacup Lying down is also my worst time. I have nearly worn hole in my sheets from constant moving.

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@teacup

Would like to know how I can continue to live with the extreme Pain attacks of my neuropathy, worst time is when I lay down, what meds do I need?

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Hello @teacup – I would like to welcome you to Connect along with Jim (@jimhd) and others. The pain can be overwhelming at times and night times seems the worst for a lot of folks. I agree with Jim that if you haven’t already met with a neurologist that would be a good place to start. Have you received a diagnosis for your neuropathy?

We are glad you found Connect. It’s a good place to learn what other Connect members with similar health concerns are doing for treatments. Keep asking questions until you find an answer – you are your best advocate. Hoping you find some relief soon.

John

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@parus

@teacup Lying down is also my worst time. I have nearly worn hole in my sheets from constant moving.

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It’s difficult to maintain a bright outlook with this disease. My worst times are also at night but I’ve discovered that, for me, some of the discomfort can helped by keeping the feet cool (maybe even cold). I’ve had better results in putting a hot water bottle filled with COLD water between my feet when I go to bed. I don’t know why that works but it does for me. It allows me to get to sleep. There are so many causes and symptoms that are related to this disease. As far as I know, nothing has been found that really helps all the permutations and some that cause other problems. I’ve only tried gabapenten and it didn’t work well for me. I’ve tried to stay away from regular pain medication other than acetomenaphen (spelling may be wrong but you get the idea). I also have arthritis and that seems to kick up when I’m having a bad night’s sleep. I have a family member who also has PN and it has affected bladder and hands too so it evidently is a progressive process and not a good one. I sincerely hope a silver bullet is discovered soon and hopefully one that has no side effects and until then, I’m sticking with my cold hot water bottle.

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@parus

@teacup Lying down is also my worst time. I have nearly worn hole in my sheets from constant moving.

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The only other medication known to me to be helpful for some with NP is Lyrica. I have mentioned Ketamine in past postings but I think it is still experimental for Non Surgical pain.

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@parus

@teacup Lying down is also my worst time. I have nearly worn hole in my sheets from constant moving.

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My neurologist has told me to go up from 300 mg Gabapentin twice daily to 300 x 3. Dosage is important.

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@parus

@teacup Lying down is also my worst time. I have nearly worn hole in my sheets from constant moving.

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Cold is helpful for pain and inflammation in early stages.

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@parus

@teacup Lying down is also my worst time. I have nearly worn hole in my sheets from constant moving.

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@mfobrien36 @parus @teacup @johnbishop – I haven’t found a solution that works every night. I have a blanket lifter, which is a good start, as touching the sheets or having any weight on my feet hurts. It’s so hard to keep nurses and aides from covering my feet in the hospital. Sometimes it helps to wear socks, as they stop the friction from moving my feet, but other times the socks hurt and barefoot it is. Then there’s the issue of lying on my side. Sometimes it works to put them on a feather pillow, other times I hang them off the side of the bed.

Usually, I put Lidocaine cream on my feet, and that helps me get to sleep.

For a time I didn’t have a blanket lifter, so I wore slippers with a stiff sole.

We get creative, don’t we.

Jim

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Been there … many times. I also have had some luck with using Vicks or Bengay – don’t like the smell but when really hurting, it helps. I also sleep on my sides and with the occasional help from a very comfortable recliner – can accumulate sleep. My feet are better in the morning as by later in the day, ankles (and feet) begin to swell so I try to hit the bedroom before that becomes too swollen. You’d think with all this information available, someone could come up with a “silver bullet” that works well without causing more health problems.

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@mfobrien36

Been there … many times. I also have had some luck with using Vicks or Bengay – don’t like the smell but when really hurting, it helps. I also sleep on my sides and with the occasional help from a very comfortable recliner – can accumulate sleep. My feet are better in the morning as by later in the day, ankles (and feet) begin to swell so I try to hit the bedroom before that becomes too swollen. You’d think with all this information available, someone could come up with a “silver bullet” that works well without causing more health problems.

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The more I am on this website and read the postings, I too, wonder with all of us having this trouble with PN why hasn’t someone come up with an answer!!!!! I read everyone’s posting because then I don’t feel so alone…….I know that others are putting up with similar symptoms, tolerating the burning and pain of feet that cry for some relief of some kind. At present I am trying acupuncture from a highly recommended Chinese MD in the area…..eight treatments and no relief yet. However, I spent an equal amount of time….or way much more…. with every pill on the book for PN so am being patient. I would be interested in what relief some of you have had with cannabis ….I know there are many compounds that can be formulated by pharmacists…creams and oil under the tongue. Comments????

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My husband was prescribed one of those compounds. Insurance wouldn’t pay for it and it was $60 for an ounce. He used it once.

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@parus

@teacup Lying down is also my worst time. I have nearly worn hole in my sheets from constant moving.

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@ujeeniack – I’ve heard that Lyrica helps a lot of people. Unfortunately, side effects from taking it put me in the hospital, incoherent. Bummer, because it was actually starting to help.

Jim

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@mfobrien36

Been there … many times. I also have had some luck with using Vicks or Bengay – don’t like the smell but when really hurting, it helps. I also sleep on my sides and with the occasional help from a very comfortable recliner – can accumulate sleep. My feet are better in the morning as by later in the day, ankles (and feet) begin to swell so I try to hit the bedroom before that becomes too swollen. You’d think with all this information available, someone could come up with a “silver bullet” that works well without causing more health problems.

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@fonda you have asked the same question many of us here on Connect and elsewhere have asked. While there is research being done on finding an answer to nerve regeneration most of the money being spent is on the drugs that block the pain signals from the damaged nerves from getting to the brain. Top that with all the companies out there trying to make a buck off of the people suffering from PN. Bottom line is you have to do your own research so that you have confidence in what works, what might work and what’s a scam. Here are a couple of links that can help you:

— How to Avoid Quacks and Snake Oil Treatments
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/
— FDA’s Don’t Be Fooled By Health Fraud Scams
https://www.fda.gov/forconsumers/consumerupdates/ucm278980.htm
— NIH’s National Center for Complementary and Integrative Health which offers guidance about integrative health and how to evaluate it
https://nccih.nih.gov/health/decisions

I only have the numbness with my neuropathy and have not been able to totally get rid of it but I have made it better. You can read my my story in an earlier post here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985. I take a protocol of over the counter vitamins and supplement that was recommended to me. I do not know if it will work for everyone but there are a lot of folks it has helped get rid of the pain and eventually get off the drugs they were taking for the pain. I ran the list of supplements by my doctor who shared it with a Mayo pharmacist who only had a comment about the omega 3 oils in the list being high. But research is key and I showed my doctor a Mayo link that listed specific recommendation of omega 3 oils for treating different health issues and it was within the range. I’ve shared it with my pcp and they don’t have a problem with it.

I had done a lot of research on my own before finding this protocol of supplements on a closed Facebook group. I had previously tried almost every topical available over the counter with no help for the numbness. I had even purchased a tens unit (Zopec DT-1200) that had specific settings for neuropathy…my bad. I used that for about 3 or 4 months for 30 minutes in the morning and 30 minutes at night. There were times when I thought it was helping but I really couldn’t tell. Since I found the group a year ago in August, they have become a 501c3 and setup a website to make it easier for a lot of us that don’t like Facebook – http://solutions2pnpd.com/. There are some that might think the group is a scam but they are legit. They expect you to do a lot of reading of all the docs that explain the supplements and how they help.

Hoping all of us find something that works.

John

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