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Anyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: Oct 28 4:54pm | Replies (3050)Comment receiving replies
Dear John, I am very glad you don't have too painful of symptoms, I am sure the ones you have are no fun and chronic. Still they are classified as pain. Try the Saran Wrap, it even gets rid of my numbness. sometimes all you want is a little respite. I don't leave it on too long as im not sure it is good in the long haul. I wrap mine loosely. it is wet underneath when I take it off. My theory in a for pay medical system the doctors will operate because they can and make good money doing it. In Canada where most is universal the doctors get paid anyways so don't need to schedule expensive, painful. and sometimes useless operation. Our problem is long waiting lists and not enough gps., The government is trying to change that..Also a lot of people rely on pharmaceuticals solely. Needed sometimes. I was depressed and anxious in my lifetime. I am 70 now and recovered from all of those. Sometimes with pills and therapy sometimes just talk therapy. You have to do the work in my opinion or you are dealing with illness your whole life. very sad and exhausting. As you can tell I am passionate about my search. I realize this and that we all have to find what works for us. I never try to tell others what they should do and just tell of my own experiences. Thanks to all who are in Pain. It will change. W.
Replies to "Dear John, I am very glad you don't have too painful of symptoms, I am sure..."
hi again John. I have a hypo allergenic moisturizer that works for me. Body and mind are one. When I am negative emotions my feet and legs burn. Fortunately and unfortunately I am in touch with most of my emotions. By distraction like you said seems to be the strongest way to trick and detour pain. I have tried mindfulness and have meditated for years . They totally distract me from my body and mind so I have no pain. The parasympathetic nervous system relaxes us . The sympathetic nervous system is the fight and flight which is good in short bursts but not for those illnesses which are made worse by those chemicals always running through our system. Chronic pain causes many unwanted emotions and physical symptoms. Insomnia, anxiety, depression are fear based. Deal with the fear, learn how to relax without stimulants. Watch your breath . I pay nothing for these and have reaped more benefits then I have ever achieved thru medication . Nerve problems are tricky , and there is help. Good luck John
@galfiath here.... OK what is all this talk now about Saran wrap and neuropathies as several have mentioned it but no one is telling how you use it!. Since my accident back in Nov when my scooter took a chunk out of my leg, nurses had to dress the wound daily for over 4 months, and now I believe I have a neuropathy in the foot of that leg But I have not seen a Dr about it yet so I have no idea what kind of neuropathy I have.. It is more like weird sensations as opposed to pain. Sometimes it feels that foot is walking on velvet, but if you think that sounds nice it "ain't" because I KNOW it is far from normal. And since I don't drive any more, getting to my neurologist is difficult. And in addition, I am still learning to walk again. I have been using a walker, and hope to switch to 2 canes shortly, but then how do I carry anything? Guess I have to use a fanny pack. Can't wait to ditch the canes also. Yes I see my therapist weekly and am very faithful in waling the distance he wants each day. But because I was Dx with Myotonic Dystrophy, some are wondering if I will ever get aback to walking normally again....so I walk on!. However my therapist thinks I can get it back so I work hard to bring his thoughts into reality.
Hi @gailfaith -- @charly mentioned earlier that he has used Saran Wrap to help with the pain and numbness in his feet/legs ... wrapped loosely on his leg and didn't leave it on for a long time. See the post here:
-- https://connect.mayoclinic.org/comment/107021/bookmark/?ajax_hook=action&_wpnonce=16e7a3a061
I have not tried the Saran Wrap yet but I'm open to trying it to see if it does anything for the numbness in my ankles/feet. I know that there are no drugs that can fix the numbness because numbness and neuropathy are basically caused by damaged or dead nerves and drugs only trick your brain into blocking the pain signals. I've tried just about every topical cream and treatment and none of them have helped either. The only thing that has worked for me with limited success is a protocol of supplements that actually help repair the nerves. I've been taking them for almost 2 years. When I started the numbness was in both legs to just below my knees. After 2 months of taking them the numbness was just above the ankles. I haven't made any progress since that first 2 months but the catch 22 for me is that the numbness has not gotten worse which is what the neurologist said was going to happen. To me that is a big deal so I continue to take the supplements. There are days where I can feel my toes but I still feel the tightness and numbness in my ankles and feet.
John
@gailfaith I have no medical training or knowledge but have run across research that one of the causes of neuropathy is damaged nerves caused by injuries, surgeries, etc.. Maybe this is the source of your neuropathy?
John
Wow John what are the supplements. Sounds like they really have helped you. Some neuropathies aren't curable as yet. If they were someone could win the Nobel prize . A younger friend of mine had it after her second child . She says after a few months the pain left her. Some neuropathies caused by drugs get better after the drugs are out of their systems. I am very happy of your improvement and am a little sceptable. There are so any people with there healing remedies. As one who has tried most everything without an improvement I again am interested but not hopefully. What are the ones that helped you do you own the companies. Hahaha anyways glad you had some success with yours. When I meditate I feel no pain or numbness. I do it for an hour a day. I add a little time slowly. I too hope that nerves could be healed and the many sufferers find peace and relief from this terrible disease.
Charley here. Wrap Saran Wrap loosely around leg or feet or whatever has numbness or burning etc. don't think too hard about this. Just wrap around loosely till skin is covered. We have to experiment as doctors know how to test but most cases I know have had no cure. I wouldn't put over a wound until tissue is healthy. It works for my poly neuropathy. Send me 10 dollars and I'll send a video. Just kidding. People who say they have cured it are most selling a load of crap good luck man, it is quite a ride
Hi John, I guess that is sort of like putting a bar of soap under your bottom sheet (doesn't need to be touching your legs) (any band apparently but Dial) seems to stop restless leg syndrome in many but not all. . And no one knows why. I always thought is was psychosomatic, but one night my legs were all over the place. So when I woke up I looked to see where the soap was. It had fallen off the mattress and it was still under the fitted sheet but along the side of the mattress! Been working great since as long as it stays ON top of the mattress. @ gailfaith.
@johnbishop - I too have experienced relief by using vitamins and supplements. I have idiopathic small fiber neuropathy but have no pain. I had numbness on feet to my knees and tingling that was the biggest bother at night on both. I have a long history of degenerative disc disease issues , but I control it with exercise and lots of walking. I also started Yoga in January. The doctors say my back is not the cause of the neuropathy. I started taking a multivitamin, b complex and alpha lupeic acid as recommended by the rheumatologist. He said there have been some good studies about b vitamins and alpha Lopeic and he would add in a multi vitamin. Almost overnight after adding in the multi vitamin the pins and needles and tingling disappeared completely and the numbness diminished just to the ankle on one foot and just the bottom of the foot on the other foot. It's hard for me to believe this can't be related. Regardless if it's the "fix" it's worth a try. nutrition is often overlooked so I should add that I stopped eating meat in March and eat a natural food diet as I always have. None of which would hurt anyone while they look for their answers. I consider myself very lucky in comparison to most, but thought it might be worth sharing this little bit.
@charly I found the supplements through a closed Facebook group. They are all over the counter vitamins, minerals and supplements. When I found the group they had about 3K members and now are over 7K in numbers. Most have the PN with pain and were taking the normal drugs to block the pain. A lot if not all of those members have been able to taper off of their medications and just take the supplements. I did a lot of research and trial and error like a lot of us before I found what has helped me. I don't know if it will work for everyone but it's all natural stuff so it's not going to hurt a person. The group is now has 501c3 status and a program for members who can't afford the cost. I figure the cost for me to be about 8 to 10 dollars a day and unfortunately nothing is covered by insurance. I ran the supplements by my doctor who shared them with the Mayo pharmacist. His only comment was he thought the Omega 3 and 6 supplements were kind of high numbers. But if you do your own research on each of the supplements you can make your own decision.
The group has a website that makes it easier to join the Facebook closed group - http://solutions2pnpd.com/. I was hesitant before I first joined but I did my own research and made a decision to try it and I'm glad I did. There are so many scams out there taking advantage of people with neuropathy which is why I always recommend doing you own research. Here are of the sources I've used but not all:
Quazar's guidance about avoiding scams and snake oil cures
-- https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/
FDA's HEALTH FRAUD PAGE
-- https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm
NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
-- https://nccih.nih.gov/health/decisions
John
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Thanks Charly. You are so right about sometimes all you want is a few moments of normality. I find a little of that if I can stay focused on other things during the day. I will have to try the Saran Wrap to see if it makes a difference for me also. It might just be related to something similar to a warm bath or spa treatment due to making the legs/feet sweat. Another important item is to keep your skin hydrated and moist. The best thing I've found is some magnesium lotion but I also use some cheap stuff from Walmart - UdderlySmooth.com. They have a hand cream and a body cream. I like it because it doesn't give you a greasy feeling but leaves the skin moist...which is important for small fiber neuropathy being that the nerves are near the skin.
Hoping for a pain free day for all my PN friends.
John