Anyone here dealing with peripheral neuropathy?

vit. B12 and maybe B6 is what U should try.

Strangely enough, my leg cramps happen most often when I awaken in AM and do the in-bed stretch. This stretch seems to be a bit out of my control and while I can stop it, it seems to have a mind of its own -- this is when the cramps hit on the outside of my ankle and in my feet. I can't tolerate gabapentin but do take Vit B12 (oral supplement). Feet are most comfortable when cold (icy cold!). I notice when I don't drink enough water, the cramps are more severe. I have the type of PN where my feet are hyper-sensitive - feel everything - even bathmat causes discomfort. I've had this level of discomfort since chemo 6 years ago. It never improved but did get more severe. I've kind of divorced myself from traditional testing as it seems painful with no indication that the tests will result in help... so I take my tylenol, keep my feet cold, and alternate between swearing and praying.

Strangely enough, my leg cramps happen most often when I awaken in AM and do the in-bed stretch. This stretch seems to be a bit out of my control and while I can stop it, it seems to have a mind of its own -- this is when the cramps hit on the outside of my ankle and in my feet. I can't tolerate gabapentin but do take Vit B12 (oral supplement). Feet are most comfortable when cold (icy cold!). I notice when I don't drink enough water, the cramps are more severe. I have the type of PN where my feet are hyper-sensitive - feel everything - even bathmat causes discomfort. I've had this level of discomfort since chemo 6 years ago. It never improved but did get more severe. I've kind of divorced myself from traditional testing as it seems painful with no indication that the tests will result in help... so I take my tylenol, keep my feet cold, and alternate between swearing and praying.

Hello @ridgerunner, I think we may be two peas in a pod with slightly different diagnosis. I'm also 73 and have had the tingling, numb toes & feet for over 20 years but ignored until this past March when I went to a Mayo neurologist and was diagnosed with idiopathic small fiber neuropathy. The neurologist thought it may be genetic but my living relatives are too far away to run tests. There can be many causes for neuropathy including chemotherapy and some drugs. I believe lisonpril (blood pressure med) was the cause of my SFPN. I took it for over 5 years in my 40s until I participated in a Mayo heart study and the cause/diagnosis of my high blood pressure was changed and I was switched to spironolactone and hydrachlorathyazide. It could also have been caused by me being pre-diabetic but I'm not fully convinced.

If you do not have the pain that goes with neuropathy you are one of the 20% or so that only has the numbness/tingling and not the pain that goes with it. I did not start being proactive until last March which is when I had an EMG and several MRIs before meeting with the Mayo neurologist. At that time I was still looking for the magic bullet and trying to avoid all the scams out there for people with our condition. After my neurologist told me there are no medications or topical creams/oils that will get rid of numbness I started doing my own research. First I joined the Minnnesota Neuropathy Association where I started my search. They had some resources on the website for things that have worked for some people with the caveat not everyone will be helped with each of the treatments so you just have to keep looking until you find something that works for you. There is also quite a bit of information on the Foundation for Peripheral Neuropathy's website. I have similar problems with balance and driving. There are some exercises that will help with your balance. I will see if I can find the link and post it.

After the neurologist told me there was no magic bullet for the numbness/tingling I decided to step up my search and found several closed Facebook groups on neuropathy. I had joined a couple of them before finding one that works for me because they offer a solution where the other groups were more for support and sharing stories/diagnosis. This group https://www.facebook.com/groups/SPNPD/ - Solutions for Peripheral Neuropathy Pain & Discomfort has put together a protocol of supplements that will help with repairing the nerves. It may not work for everyone but they have a very high number of success stories and over 3000 members in the group, all with different PN and multiple other diagnosis. The group sells nothing and has recently obtained their 501c3 status which is a plus for me. I started taking the protocol in the first week in September 2016 and when I started the numbness/tingling was in both legs down through the toes starting just below the knees. It is now just above the ankles so even if it doesn't total repair the nerves down through the toes I'm happy because it has reverse the progress of the disease. I also have polymyalgia rheumatica and it has been in remission for about 6 or 7 years but it came back this past August so I had to start taking prednisone for it. I'm currently trying to titrate off of the medication but it's not going well so will just have to keep working on it.

I would recommend taking a look at the protocol and then discussing it with your neurologist or primary care physician.

Good luck and don't give up, there is hope!

John

For cramps, I've tried all the obvious remedies. I take magnesium, calcium supplements and eat a banana almost every day (not just for potassium, I really like bananas). I tried the soap remedy under the sheets not too long ago, and I found that my feet and legs "burned." Maybe I'll try it again using a different type of soap. I had a cramp last night in my right foot, hobbled to the fridge and took a swig of pickle juice, and then ate a pickle. The cramp went away and didn't return. Weird. It seems to work only at the beginning of the cramp. Once a cramp has really set in, nothing works for me. I just have to wait it out and it often takes all night for my muscles to relax. Please keep sending any suggestions my way, no matter how silly they may seem. I may try medical marijuana and intend to bring it up with my PCP next week.

For cramps, I've tried all the obvious remedies. I take magnesium, calcium supplements and eat a banana almost every day (not just for potassium, I really like bananas). I tried the soap remedy under the sheets not too long ago, and I found that my feet and legs "burned." Maybe I'll try it again using a different type of soap. I had a cramp last night in my right foot, hobbled to the fridge and took a swig of pickle juice, and then ate a pickle. The cramp went away and didn't return. Weird. It seems to work only at the beginning of the cramp. Once a cramp has really set in, nothing works for me. I just have to wait it out and it often takes all night for my muscles to relax. Please keep sending any suggestions my way, no matter how silly they may seem. I may try medical marijuana and intend to bring it up with my PCP next week.