Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

I have neuropathy in my buttocks.
It’s called numb bum wallet bum or bleacher bum
Only mine does not go away if I sit for more than 5 min. I have tried everything. Does anyone have any thoughts I’d really appreciate some feed back.

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@prudence

I have neuropathy in my buttocks.
It’s called numb bum wallet bum or bleacher bum
Only mine does not go away if I sit for more than 5 min. I have tried everything. Does anyone have any thoughts I’d really appreciate some feed back.

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Hello @prudence, are you able to share any specific diagnosis for your neuropathy? I'm not familiar but I did a search and found a few other Connect members who have posted about pain in the buttocks.

@robertlclark @jimbourg8 @lisaw are you able to share any thoughts or information with @prudence

I did a search on neuropathy in the buttocks and the following link that may be helpful or offer more information.

Diagnosis and Management of Piriformis Syndrome: An Osteopathic Approach
http://jaoa.org/article.aspx?articleid=2093614

@prudence can you share what you have tried for treatments to help the neuropathy in the buttocks?

John

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@allisonsnow

what I have is a big ?. It may sound like a stupid ? but what is the difference between diabetic neuropathy and that caused by the chemo I received. They said I may get it and it probably wouldn't go away (it didn't). So when it didn't I wasn't surprised but it has gotten worse. What can I do?

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Thanks for the information sources. I have eliminated gluten and sugar and artificial sweeteners, for the most part but occasionally have regular ice cream (ie, not sugar free). I’m trying to control my type 2 diabetes by diet and take metformin twice a day, hopefully reducing to zero at some point.

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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I think we all have to find our own relief. In 6 years not one of the 9 specialists I saw has really helped the pain of my peripheral neuropathy. I have idiopathic neuropathy. Numb from toe to knees, sometimes freezing , sometimes burning but chronic pain. I tried cymbalta, gabapentin, anitriptaline. All the side effects were unbearable. The neurology tests showed yes indeed I had it . I had to find my own relief. What works for me is mostly meditation(I had practiced many years before neuropathy,) counselling for anxiety and depression,cannabis for insomnia, Saran Wrap around calves and feet even takes numbness away. Weird but try it. I wish the pharmaceuticals would have worked but I learned a lot and most days am content and happy. When flare up comes ,warm bath and Saran Wrap. Very fortunate for me I live in Canada and we have health coverage. Also we have good pain clinics that teach about pain. I have also found anything that bothers my nerves bothers my emotions as well. Too hot, too cold, too windy, people who antagonize me, dumb politics you name it. gentle and middle way seems to guide me through this terrible disease. Appreciation Charly

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

Jump to this post

Hello @charly welcome to Connect. I do agree with you that we all have to find our own relief. I also have idiopathic small fiber peripheral neuropathy but I have no pain with it. I just have numbness and tingling with my neuropathy. When I received my diagnosis, the neurologist told me there is nothing that treats the numbness. All of the drugs on the market that address the pain come with their own associated side affects which can be as bad as the pain itself.

I'm glad you found some treatments that work for you. Thank you for sharing the tip about Saran Wrap. It's something that doesn't cost much and if it works for you it's a great solution.

John

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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.

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@charly

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.

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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

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@charly

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.

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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

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@charly

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.

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@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.

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@charly

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.

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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

Liked by steeldove

REPLY
@charly

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.

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@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

REPLY
@charly

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.

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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.

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@charly

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.

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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

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Charly- I'm sorry, I think I didn't explain well enough. I was asking if anyone had server jerks in the night when you are sleeping- For me they have become worse as well as the feeling of falling more than before. I have been on the medication for 4 years now and does help with some things, Sorry for the mis-understanding. Jsouth

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@charly

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.

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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.

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