Living with Neuropathy - Welcome to the group

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.

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????

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.

@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

@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

Thank you for your response. I will read and study. I appreciate your involvement in this blog.

MAYBE U NEED A LOWER DOSE

KEEP IN MIND THE CAUSE OF THE NP: IF DIABETIC,REDUCING GLUCOSE LEVELS MIGHT HELP.

Hello @ujeeniack, thank you for the helpful tips. I would just like to add that using all caps signifies shouting in an online community and can be taken the wrong way. Your suggestions are good suggestions though, thank you.

@ujeeniack - I was probably on a low sample dose, and I don't really want to go through the nightmare again. I couldn't complete a sentence, lost memory for a time, tachycardic, thought I might have had a stroke. If my wife took me to the ER, you know it was bad. I take morphine sulfate contin now, just stopped Cymbalta, and received a lot of pain relief with the spinal cord stimulator implant. Lidocaine cream helps. I'm a champion sleeper, would get 10+ hours a night every night if I could. I use a BIPAP machine, and several of the meds I take at bedtime are sedating, which could be a problem if I took too much. So, as a rule, pain doesn't keep me from sleeping, though it does wake me up often, telling me to adjust.

Apparently, Gabapentin works for you. I tried it, back toward the beginning of this journey, but no pain relief. Do you take any other meds for neuropathy?

I'm up way past my bedtime, so must say goodbye.

Jim