Living with Neuropathy - Welcome to the group

Hello @libbye, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I know it must also be difficult for you to know your husband is in so much pain and not know how to help him. Has your husband tried something like a donut pillow with a hole in the center (orthopedic donut cushion) to see if that helps with pain when sitting?

Hello, my name is Scott. I have been diagnosed with Idiopathic Axonal Sensorimotor Peripheral Neuropathy. I believe this is due to deployments to Afghanistan and Iraq. My legs often feel like bugs crawling around just under the skin and electric shocks traveling through them. I have been taking several supplements for many years.

Hello Scott @revfluegel, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. @egayle187 @jenniferhunter @suzylulu and other members have discussed similar symptoms of feelings like bugs crawling around under the skin and electric shocks and may be able to share their experience with you.

I also take supplements to help with my idiopathic small fiber peripheral neuropathy. I shared my story in another discussion which you might find helpful - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/

You mentioned you believe your neuropathy may be related to your service deployment in the middle east. The VA has some information that might be helpful if you have not already seen it - Airborne Hazards and Burn Pit Exposures: https://www.publichealth.va.gov/exposures/burnpits/

Do you mind sharing what supplements that you are taking and if you are also taking any medications to help with your neuropathy?

I recently read if a new drug which in trials proved to be superior to Lyrica with very little if any side effects. It is called Mirogabalin but I am nit sure if it is available in the U.S. I believe it was developed by a Japanese pharmaceutical co. It is a drug for neuropathic pain. You can Google it to find out more. Which supplements do you take? My neuropathy began like yours, those symptoms have improved greatly over the past 3 years, I take R-alpha lipoic acid and ALCAR, minimal carbs and sugar, no alcohol and exercise plus I take 300mg. gabapentin at night.

Thank you @helennicola for this information. I am including a link to Wikipedia for a brief introduction. It appears to have results for diabetic neuropathy patients.

Thanks Chris, there is also other info available if Googled, it has already been approved to treat neuropathy in China I think (forgot which country) but the impressive fact is that there are very little if any side effects as it targets different pathways than Lyrica for which there are numerous side effect complaints. I would imagine (if all is true) that it will replace Gabapentin also.

I worked in the pharmaceutical industry for almost 40 years. I doubt they have even filed an NDA with the FDA. It could take years to get here, if ever. I was at the mayo clinic in Rochester this past June to confirm a diagnosis of idiopathic small fiber neuropathy, which they did. They offered no hope for my pain. Do you know of any effective drugs coming to the United States anytime soon. I just wonder if anyone in the world is researching how to cure neuropathy, or if everyone is just interested in another mediocre pain treatment. Currently, I am in a trial of spinal cord modulation to see if it can help with the pain. They have been researching neuropathy for decades and all they can come up with or the anti-seizure drugs or Cymbalta to help treat the pain. That shows you that one, it’s either a very difficult research area or they don’t think it’s profitable enough to research for a cure. The Mayo clinic did a lot of tests on me some of which I’ve had done several times. Nothing of any significance was found. So basically it was a waste of time and money. Wish I had better news coming from my trip to Mayo.

@magnum52, I had the same feeling when my Mayo neurologist told me there was nothing that could help with the numbness from my idiopathic small fiber PN which put me on my quest to find something that would help me. Although I don't have pain with my neuropathy there are others who are suffering like you that have been helped with the supplements I take for my neuropathy. Here's a post from a member in the UK that you might find interesting if not helpful - https://connect.mayoclinic.org/comment/611196/. I posted my story in the Member Neuropathy Journey Stories: What's Yours? discussion here - https://connect.mayoclinic.org/comment/310341/

I think it helps to do your own research and learn as much as you can about your specific type of neuropathy and treatments that are available including complementary and integrative. I started with the Foundation for Peripheral Neuropathy (https://www.foundationforpn.org/) after my Minnesota Neuropathy Association support group stopped having meeting. Then I found one of the best sources for neuropathy information is Neuropathy Commons (https://neuropathycommons.org/). Lastly I use Google Scholar (https://scholar.google.com/) because you can sort the results by year to find the latest medical research on a subject.

My hope was always in stem cell therapy but it will be no where in my lifetime. WinSanTor has shown some promise in helping diabetic neuropathy sufferers but I really have my own personal bias and doubts because it seems like just another new drug solution for symptoms and not a cure.

Hopefully you will find some answers and something that provides relief for you. Keep search and asking questions 🙃

I would try a circular, hole in centre, inflatable cushion. I works for me. Good luck!

There lately seems to be movement in the pharma research community looking for alternative pain medication as a replacement for opiates. Here is an article that may be of interest https://www.drugabuse.gov/news-events/nida-notes/2019/02/promising-alternative-to-opioid-pain-medications