Anyone here dealing with peripheral neuropathy?
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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!
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Thanks for the info, John. I’ve read quite a bit on SFSN, and my symptoms are identical to everything I read on the disorder. I have no difficulty walking or moving around. Besides the gabapentin, I also take a number of supplements, including B12. That really helped the worst of the pins-and-needles and electric shock-like symptoms to dissipate when I had a flare-up a couple years ago. The only other issue I have is painful, sometimes disabling cramps in my feet and legs, mostly at night while at rest. But I think that might be a separate disorder from the neuropathy. I’ve heard from doctors that a lot of us “older folks” (I’m 67) have the problem, especially in the evening. It’s pathetic that no one in the medical community can offer any help to the millions of people who have these problems. For me, the cramps are worse than the neuropathy. I’ve tried OTC creams and lotions, taking Hyland’s pills, stretching exercises in the evening, massage, and even drinking pickle juice. Any other thoughts on how to combat the nighttime cramps?
I’m wondering if it might be as simple as not being hydrated? I’ve heard others in the neuropathy group talk about nighttime leg cramps when they don’t drink enough water. My wife gets them some nights and I will get up and get her a glass of water and then they go away after a few minutes. She also a picture of health which I am not…:-(
I drink lots of water throughout the day. The cramps seem to be a delayed reaction to exercise, of all things. The less exercise I get, the less I have cramps in the evening. Even simple walking is bothersome sometimes, but never while I’m walking. Cramping always occurs several hours later. I’ve read a little about this reaction, but I don’t think it’s very common.
I was taught this by a Vietnamese Dr.: Put on long, thick sox. And if sox only reach mid calf the cramp will go away under the sock and remain above the sock.
Do you think it could be low magnesium and or potassium levels? There is a lot of discussion in my neuropathy group about this causing some leg cramping along with hydrating. I drink a lot of the Zico no sugar added coconut water which has about 9g of sugar per 8 fluid oz – 45 calories. It has 440 mg of potassium and about 4% of of daily dosage of magnesium. I’ve been told that magnesium and potassium kind of go hand and foot together. I’m guessing this is probably not the cause since you sound like you are managing your diet really well now.
The other quirky item I’ve heard from folks that have leg cramps is to put a bar of white soap (Ivory) between the sheets when you go to bed. Sounds dubious to me but I’m a born skeptic. I will see if I can find any more info on the leg cramping – but if anyone else is reading this and knows of something please let us know what is working for you to prevent/relieve the leg cramps.
I’m guessing you have tried pretty much all of the over the counter stuff for the cramps. Another one that multiple people are using in my group are Hyland’s Leg Cramp tablets. They also have a PM version and an ointment. I’ve only had the bad leg cramps a few times in the past during the night and I’ve always been able to get up, get some water and stretch the leg to help with the cramp.
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.
I’ve had peripheral neuropathy in my feet for 10 years. I take gabapetin 3 times a day and I take Hydrocodone 3 times a day for pain. The combination of these drugs is the only way I can deal with the pain. I have been looking for information on stem cell treatment for neuropathy but I haven’t seen anything in the US. I have seen some treatments in China and Mexico. Any information on stem cell treatment for neuropathy would be greatly appreciated. I believe it’s coming but it can’t get here soon enough.
BEWARE OF ANY STEM CELL CLAIMS! A LADY I KNEW SEVERAL YEARS AGO SPENT ABOUT A YEAR IN THE TIJUANA AREA OF MEXICO WHERE SHE SPENT AT LEAST $10,000 FOR STEM CELL OPERATIONS FOR HEART AND LATER HER ARTHRITIC KNEES. ALL $$ DOWN THE TOILET!! LATER SHE WENT TO UTAH FOR OTHER QUACKS.
vit. B12 and maybe B6 is what U should try.
Amen to being aware of all the scams out there – more discussion here on scams and how to avoid:
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