Living with Neuropathy - Welcome to the group

I agree with you! Finally off all meds (methadone, Lyrica, Cymbalta, Trilipix, Restoril to name a few) since December 2018. Have my medical marijuana card and nothing else other than supplements. Best decision ever!!!

It is always great when someone finds something that works for them with their health issues; I am also a strong believer of natural methods such as supplements, exercise, meditation etc. However, I do believe that drugs serve a purpose when nothing else works; even a “placebo effect” can be beneficial. Marijuana is also a drug, not without its own health risks and side effects, but probably more enjoyable temporarily! So one can “pick their own poison” as they say, and hope for the best.

Got my medical card! Not helping with neuropathy! Tried several strands and nothing! Guess will try edibles! Not helping with back pain either!

@wilcy
None of the Marijuana or CBD helped my brother.
I refuse to take it.
Jake

I agree. Some of my symptoms came on strong about three weeks after I was immunized for the flu. After that it took months to get a diagnosis of PN. I had to keep pushing my GP. My PN is small fiber idiopathic according to my neurologist. I can’t help but wonder though...

@lynnaustin, Thanks for your feedback. In my world so far, Gabapentin is effective in that it calms the nerves that are irritated and bent on sending pain somewhere in your body. I hear you loud and clear about your fear. There are many moments that are frightening. I try to remember that everyone reacts differently. My spiritual advisor/life coach repeatedly tells me "Welcome the pain and then learn from it." I actually converse with my pain. "So, you're back again are you?" "Oh no, not today." With this firsthand information, you can learn to distinguish levels of pain and the pains response to treatments or medications.

It seems like you are on the lowest dose of Gabapentin. Is that taken in the morning or at night with the Cymbalta? For me, Cymbalta is a morning medication for anxiety. It makes a difference in how I approach my day. By helping control anxiety, it prevents you from ending up in the pain, anxiety, pain....loop. During the night when I am asleep, I don't need that help.

At this point, I am going to re-introduce @johnbishop. He is quite familiar with what he calls the supplement protocol. His experience has been that the protocol has enabled him to put the brakes on his neuropathy, e.g. to prevent its progress.

I have found that to control the neuropathy, we must also control both depression and anxiety. With mindful meditation and daily yoga practice, I believe I am able to take charge of the pain and meet it head-on.

With this condition and its advancing nature, it is sometimes necessary to give up an activity that we have enjoyed for many years. The challenge is to find a replacement. And we do have to grieve for the loss of a favorite activity, especially one which offered social engagement as well as physical effort. My bouts with self-harm were always because of a loss. Now I have a replacement and the opportunity to help you and others walking down the same path.

Finally, are you in an open medical cannabis state? There is so much being done with topicals and they last longer than those without the cannabis. Let me know what is available to you?

Have a restful sleep. And find some joy tomorrow. Chris

Hi @lynnaustin, I agree with Chris's @artscaping approach to neuropathy. I have dealt with numb feet for over 20 years and when it seemed to be getting worse in 2016 I started worring which didn't help me. I had avoided having tests to diagnose the PN because years earlier when I asked the doctor what can they do to fix it if they determine it's nerve damage. The doctor said nothing and I just avoided thinking about it until it started getting worse. After my diagnosis of idiopathic small fiber peripheral neuropathy mostly likely genetic the neurologist told me there are no topicals or medications that can help with the numbness and I didn't have any pain or burning. I was depressed until I started doing my own research and learning as much as I can about neuropathy.

One of the first things I did was join the Minnesota Neuropathy Association when looking for a local support group. At one of their meetings I heard some words of wisdom from an 80+ year old neurologist still doing research at the University of Minnesota. He said if you live long enough you will get neuropathy because nerves eventually die. So I started looking for alternative ways of helping with my particular numbness only neuropathy. You can read about how I found the supplements I taked in my story in an earlier post on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Bottom line that I have learned from all my research is that there is no cure for neuropathy but you can find treatments for the symptoms and live a more normal life. My great hope for the future is stem cell therapy for neuropathy but it's just not there yet. As promising as stem cell research is for a lot of things, I don't believe there has been any successful treatments for neuropathy. There is another discussion that you might find interesting and a warning from the FDA.

Groups > Neuropathy > Stem Cell Therapy for Neuropathy
— https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

There are also some warnings about all the stem cell clinics popping up.

Consumer Updates > FDA Warns About Stem Cell Therapies
— https://www.fda.gov/forconsumers/consumerupdates/ucm286155.htm

There are a lot of things that I can no longer do, some because I'm a lot older and some due to my health conditions. Like Chris and others I try to take each day one at a time the best I can and find something that gives me joy each day. I do like taking photos from the window next to my computer ☺

Hi John , I’m having trouble joining Protocol (not sure of name ). I’d like a list of supplements . Do you have one? Maybe you know website address? If so please send it to me. Thanks

@lynnaustin here are the two links - one to the closed Facebook group which should let you join the group but you might get asked a few questions. This is the Facebook Group I found – Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) – http://www.facebook.com/groups/spnpd – they have a website with links to order the protocol supplements: http://solutions2pnpd.com/. When you join they have a wealth of research information in their Files section. I don't have the pain that most members had with their PN. I feel the supplements have slowed or possibly stopped the progression of the PN in my legs. I still have the numbness but I do have some days better than others and it has not gotten worse as my neurologist said it would 3 years ago.

@johnbishop See below