Living with Neuropathy - Welcome to the group

@tigereyes2004 I tapered off gabapentin a year ago, was having fog and memory concerns for several years prior. I've had neuro testing and my brain is better than the first test couple years ago. This is good! I'm using MMJ for pain/anxiety/sleep/seizure help. I love the way it helps and the clarity of thought I have now. I don't vape. Nothing into my lungs and want the best entry into my bloodstream possible. I use a 1:1 tincture, THC/CBD. at night before bed and a bit differently daytime. You can figure out what works best for you, but this combination is really helpful for me. It is expensive, tho. But, I pull back on something else.....Hope this helps some with ideas. Blessings and may your find your best relief! elizabeth

Hello Sally (@sallymagint), welcome to Mayo Connect, we are so glad you found us. This is a great place to ask questions, share your story and learn about others with similar health issues and possible treatments. Neuropathy can be difficult to comprehend sometimes due to number of different types, diagnosis and possible treatments. It's pretty awesome you have found some experienced specialists that are helping you. That is a big step.

Do you have a diagnosis you can share?

Mine is idiopathic small fiber peripheral neuropathy plus a few more issues. I have to share a story about the idiopathic diagnosis. I was at a Minnesota Neuropathy Association that had 3 different speakers. There was a short questions and answers session after each speaker. The first two speakers were asked the same question - how many people around the world are affected by peripheral neuropathy? The first speaker said the number was around 20 million or so. The second speaker said including China about 80 million had some form of neuropathy. The third speaker, an 80+ year old neurologist who still had a small practice and is doing research at the University of Minnesota to develop a inexpensive test to determine if you have peripheral neuropathy, said "in deference to my younger colleagues, idiopathic was named after the idiot neurologist who did the diagnosis. If you live long enough everyone gets neuropathy because the nerves will eventually start dying off". He drew the biggest laugh from the crowd.

Hoping for some answers for you.

John

Could one of the wise souls on this thread clarify for me why I get pins and needles and hot feet only at night? I have a non diabetic sensory PN triggered by long term B12 deificiency due to autoimmune disorder (intrinsic factor). In fact my feet are cold all days and an hour or two after going to sleep, they catch fire. I recently discovered cold socks (gel pad based) which have been a life saver or I will not be sleeping very much. Amazingly, I am fine once I am back on my feet. I have to assume it has something to do with vertical vs. horizonal orientation of the body. Wish I could sleep vertically! help!!!!

@sunnyflower
How much Gapapentin are you taking now?
Hope you’re feeling better,
Jake

@sunnyflower
Thanks Sunny. You did mention this before but I had forgotten about it. I will check them out to see if they allow a trial membership. If they would let me check it out a bit first I would certainly be more interested. I have a high skepticism ratio but you are really keen on them and I put a lot of stock in what you say so I will take a look at their site. Thanks, and hope all is well, Hank

@sunnyflower
Thanks Sunny. You did mention this before but I had forgotten about it. I will check them out to see if they allow a trial membership. If they would let me check it out a bit first I would certainly be more interested. I have a high skepticism ratio but you are really keen on them and I put a lot of stock in what you say so I will take a look at their site. Thanks, and hope all is well, Hank

Hello dear friend! Boy I am so far behind on the neuropathy emails I don't think I will ever catch up and fear some will go an answer that were directed towards me and so I'm trying hard to find those but not making much progress. I got behind because I was afflicted with some new health problems which are required so much time for treatment here at home doing self care that it's just overwhelming! I still been praying everyone and really cared deeply how everyone is doing. Yes a problem with my eyes is now causing me to have to use warm moist compresses for 40 minutes a day and that's if I do both eyes at a time and for 20 minutes twice daily cannot see anything. So, I do one eye at a time and that amounts to 80 minutes a day and then I have to do eye drops throughout the day and to do them properly you have to put them in, immediately blocked tear duct and hold it for two to three minutes so that's that many minutes more for self care. Appointment at night and wow it's just hard to read anything is my ice continue to sting and burn. It's the typical old age dry eye and meibomian gland dysfunction however, it is also part of my autoimmune disease / my rheumatologist and ophthalmologist.

But enough about me how are you and Linda doing? I hope you guys are doing well. Did you both get the vaccinations? I feel fine now and have visited my family for the first time since before Thanksgiving and believe me it was a huge blessing! Oh how I miss them so! I was so lonely!

Please know I'm thinking about and praying for you guys. Private message me if you need to and I've been thinking about private messaging you about what to do with all these emails and how you told me how you avoid that. I will have to search for that I hope and pray I bookmarked it LOL as you may have read, I do not see the icons at John Bishop told me about near my picture on my profile page nor anywhere on my profile page! The only thing I found was that when you go to Mayo Clinic connect and there's a column going down the left side for groups and accounts and stuff there is the word messages there so when I clicked on that it brought me to all of my private messages. I am grateful! But yeah John Bishop spend a lot of time explaining to me how to find my bookmarked items and there was no bookmark item on my profile page at all anywhere on both my cell phone and laptop. No wonder I've been so frustrated trying to get around on connect.

, take good care and warmest regards, Sunny

PS: I did see the bookmark icon one time but not since then.

Found the bookmarks! They were right in front of me! I had been looking for the icon when instead, it was written as a word beneath my picture among other options!! Geesh, I can't find a rock to crawl under! 🙄