Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
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John, what are some of the over-the-counter supplements that you use? Are they readily available? I just joined the FB group. Thanks for that tip. Looks like it will be helpful.
Liked by John, Volunteer Mentor
Hello @georgiegirl, it’s really important to read through the group’s new member welcome document. It explains the protocol and also has link to the document that has all of the links to purchase the supplements/vitamins on amazon.com. The new member welcome is the pinned post at the top of the groups Facebook page but you can also access it through a web browser here:
There is a also nice list of what to take, when to take included inside of the document. I copied and pasted it into a separate document so I could print it out and then discuss it with my doctor to make sure there is no interaction with any current medications I’m taking. To see all of the stories for members and how it’s helped them, go to the groups Facebook page, click the search at the top and type #theprotocolworks in the search box to search the groups posts.
Hoping it works for you too.
Liked by Teresa, Volunteer Mentor
There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo or something else? There are prescription meds that work for some & also have some unpleasant side effects for some. My husband takes Gabapentin and has no problem with it. I tried it, and it did help some, but I was constantly dizzy. It was a major problem if I got up in the middle of the night. It did not improve enough to put up with the side effect.
What kinds of issues are you dealing with? I understand it can be very different from one person to the next. Whatever, it is uncomfortable, can certainly cause us to be unsure on our feet and be very frustrating. I hope you find something that helps. I am 3 years out from taking Taxotere, which is what caused mine. It is better but still a pretty major issue. I have it in both feet and both hands.
I am 9 months out of chemotherapy and neuropathy is really bad. i have no feeling in my feet and cannot tell hot from cold. any ideas for treatment?
A doctor told our group that Vit B6 can promote cell growth in cancer cells also. Might not be a good idea to take.
When I clicked on those topics I was told they did NOT EXIST.
BAD Link in my post above – it looks like the page is not available from outside of the Facebook group. The following link goes to the protocol list and has a link to join the group.
Sorry for the confusion!
@materk sorry for the bad link – try this http://theprotocolworks.blogspot.com/2017/03/protocol-links-to-purchase-instructions.html. The other page must not be available outside of the closed Facebook group.
Hello @caf132 – There is quite a bit of information available about the toxicity of Vitamin B6. It could be a great question for your doctor but I would do the research yourself which I think will help if you have a discussion with your doctor. The following link has some good information on the toxicity:
Also the National Institutes of Health’s page has a really good overview of B6:
I shy away from any megavitamins myself because a lot of them including some daily vitamins have a high level of b6 and most people get enough B6 through food intake.
As a matter of fact I have recently been diagnosed with the FGFR3 ANTIBODY (rare) which is the CAUSE of my peripheral neuropathy now I am told.
Also have Gastroparesis because of this ANTIBODY. Neurotically my stomach nerves don’t work properly and it takes my stomach 5-6 x longer to digest
I posted a post titled FGFR3 ANTIBODY, for those interested, please go there and leave me your comments.
Just knowing the CAUSE now starts to feel a little better.
The pain of neuropathy is only in my feet, though I feel its effects in my hands and other places. I put thick insoles in all my shoes, including my slippers, which really makes a difference. I never walk without slippers or shoes. Socks at night help with the pain of rubbing against the sheets, and a blanket lifter keeps the bedding off my feet. I use Lidocaine cream at bedtime, to numb the painful parts. It works for about 2 hours, long enough to get to sleep.
I recently had a spinal cord stimulator implant, and the pain is significantly better, until later in the day if I’ve been walking a lot.
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor
I almost always do the driving, and I use cruise as much as possible, so I can move my feet around. The pain became intense in 2015. In October of that year, we took a road trip from Oregon to New Hampshire, to visit our daughter, and visited my sisters and our son along the way. I had a fleece blanket rolled in front of my seat, to rest my feet on it. That was a most painful 5 week trip, but we enjoyed seeing our family, and being tourists in as many National Parks as we could. We just couldn’t do a lot of walking.
I can’t put my feet flat on the floor, either. I’m always changing position, feet on their sides, on the heels with toes pointed up, or feet on a chair.
Another thing that hurts is crossing my legs or ankles. Within a few seconds, the burning pain and electricity kick in. The doctors know not to touch my feet. Being in the hospital is a challenge, too. Every nurse wants to cover my feet. I discovered that I can’t tolerate those wraps they put on your legs, and pump up every little bit. The first pump was the last. That really hurt!
I’ve always raised my knees to read in bed, but that ended because it means putting my feet flat on the bed.
Neuropathy certainly requires a lot of adapting, doesn’t it.
Where would I get CBD oil capsules?
HI @lynsorensen, where do u live?
You can order them online. For example Charlotte’s Web makes them and can shop to all 50 states. Google “Charlotte’s Web”.
Liked by Jim, Volunteer Mentor
Hi @geek_girl do you buy her products from charlottes web, and are they any good. What kind of meds were you on before if you do not mind me asking. And is charlottes Webb the only thing you take now? I have severe neuropathy and foot drop. I am in constant pain all the time. I was on opioids for years and that did help, but they took me off of them and now I am on something called suboxone. It keeps the pain around a 6 to 7. Not good. It would be wonderful if her products worked. Please let me know. Thanks.
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