Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016
@prudence

It’s really bad in my buttocks

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Look for yoga for Performs Syndrome.

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@alanhny

I was diagnosed with idiopathic peripheral neuropathy about three years ago. It started with just slight tingling in toes and in stages has progessed to painful stinging, pins and needles in both feet and now working its way up both legs. I've tried standard palliative medications, Lyrica, Gabapentin, etc and have tolrance problems with them. Nothing in blood tests so far identifies a suspect cause and now my doctor has ordered additional blood tests and a spinal tap. For these additional blood tests I'm told expense could be considerable, depending on my insurance, but here is bottom line for me. I am under impression that it is unusual to find treatable cause for IPN, which is why such a high percentage of cases remain idiopathic, and at any point process could accelerate to where i need a wheel chair or even face major organ failure. This scares the heck out of me. I'm a 77-year-old man otherwise in good health and I've got a few more things I'd very much to do in this life before I join my ancestors in the sky. I'm not sure of the mechanics of this groups so I'm just going to post this and see what comes back. I think there's a moderator in here somewhere. I have enormous respect for the Mayo Clinic and I was so glad to find this group. There's so much questionable stuff out there on line on this subject and and just about any other.

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Got it, thanks.

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@alanhny

Thanks so much for this info, Johnhans. Nobody in my family I know of has the condition and I dont have the info about large bundle or small fibre, which i will now ask about. Thanks again.

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@alanhny– Hang in there my friend! Sorry to hear about the extent of your Neuropathy. It just seems that someone has to come up with something soon with as many that are having these terrible systoms! Thinking of you tonight. Jim T.

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My neurologist has diagnosed me with peripheral neuropathy, but I don't really understand it. I know I have pain, numbness and tingling in my left leg.and foot I thought it was the after affects of the shingles about 5 years ago. I also have restless legs and back problems big time. My legs and feet cramp when I sit and during the night. I am taking Pramipexole and Gabapentin. I am alo on oxygen only at night. Does peripheral neuropathy get worse as time goes on? My right leg is starting to have the same symptoms.

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@hosta

My neurologist has diagnosed me with peripheral neuropathy, but I don't really understand it. I know I have pain, numbness and tingling in my left leg.and foot I thought it was the after affects of the shingles about 5 years ago. I also have restless legs and back problems big time. My legs and feet cramp when I sit and during the night. I am taking Pramipexole and Gabapentin. I am alo on oxygen only at night. Does peripheral neuropathy get worse as time goes on? My right leg is starting to have the same symptoms.

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Hello Eve (@hosta) — I have had small fiber peripheral neuropathy for over 20 years but only have the numbness and no associated pain. I have no medical training or background but I know each of us are different when it comes to peripheral neuropathy. Here is an easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:
https://youtu.be/8nrv7lRvvwU

You might also be interested in the following discussion in the Sleep Health Group – Restless Leg Syndrome:
https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/

John

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@hosta

My neurologist has diagnosed me with peripheral neuropathy, but I don't really understand it. I know I have pain, numbness and tingling in my left leg.and foot I thought it was the after affects of the shingles about 5 years ago. I also have restless legs and back problems big time. My legs and feet cramp when I sit and during the night. I am taking Pramipexole and Gabapentin. I am alo on oxygen only at night. Does peripheral neuropathy get worse as time goes on? My right leg is starting to have the same symptoms.

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Peripheral neuropathy is indeed different for each of us. Mine progressed rapidly up my legs to the knee, then stopped. Is also in my hands. I take Gabapentin to control pain or stinging. No side effects. I have learned to live with it and do not give it much thought. I deal with a bulging disc which causes Sciatica which takes my mind off most of my other problems. 🙂

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I am dealing with neuropathy I have tried gabapetin (spelling?)pills and foot rub. Nothing has worked. It is difficult to walk.

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@suzylulu

I am dealing with neuropathy I have tried gabapetin (spelling?)pills and foot rub. Nothing has worked. It is difficult to walk.

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I have had good results with Gabapentin at 300 mg. dose ,twice or three times daily, for several mos. now. One resident here has been using Lyrica for over one year, a trade name, with success.

Try pain relief with acetaminophen too.

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@suzylulu

I am dealing with neuropathy I have tried gabapetin (spelling?)pills and foot rub. Nothing has worked. It is difficult to walk.

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Hello @suzylulu

I am so sorry to hear that your neuropathy makes it difficult to walk. That must be so uncomfortable. If the difficulty walking because of pain or numbness or a combination of both?

Have you discussed with your doctor any other meds or treatments that might help since the Gabapentin did not work for you?

I'm going to invite mentor, John Bishop, @johnbishop to this discussion. John is a mentor who has also dealt with neuropathy a long time. He might be able to offer some insights for you.

I look forward to hearing from you again.

Teresa

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I too suffer with the problem of walking with neuropathy and mine is 100% from the pain aspect. Taking 900 mg of gabapentin 3 times a day to just dumb down the issue. Anymore than 30 minutes walking or standing and I am in serious pain, like crushed glass in my shoes. Used to jog 25-30 miles a week and have run many half marathons and one completely. Really miss being able to be active.

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Hello @suzylulu @ujeeniack and @timmckinney — As others have mentioned here we are all different and what works for some may or may not work for others. I too have difficulty walking with my peripheral neuropathy even though I only have the numbness and tingling associated with my neuropathy and have no pain like most of you have. I have no medical training or background but from my research and discussion with my neurologist, the drugs are only for the pain and have zero affect for numbness. Both of my legs are affected. Comfortable shoes that have some support help with the walking but even with this I can't walk more than a few blocks at a time. I do think it's important to keep trying and keep working on strengthening your legs. I have a recumbent exercise bike that I ride for 30 minutes when I first get up in the morning (most mornings).

I have had PN for more than 20 years. It started in the toes like most of you and over the years it gradually worked it's way up to just below the knees. I take over the counter supplements I found through a closed Facebook group – Solutions to Peripheral Neuropathy Pain & Discomfort. They also have a website and have 501c3 status – http://solutions2pnpd.com/. I have been taking them since Sept 2016. By December 2016 the numbness went from just below the knees to just above the ankles and I've made no progress since then…but it's a win for me because it hasn't gotten any worse like my neurologist said it would so I continue to take the supplements. The group is over 7,000+ and many have successfully gotten off of all drugs and no longer have the associated pain with PN. If I can make one important point is that each of us should do our own research as well as be our own advocate when it comes to our health. There are a lot of products, companies, groups, etc. out there that are making money selling us stuff that may or may not help.

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

I also think nutrition plays a big part in the cellular health of our bodies so I try to stay away from all processed foods but I'm not perfect with it. I also try to buy organic when possible and eat a lot less red meat than I used to eat. I've also found that I can't do a lot of things I used to be able to do so I try to live within my limitations and find other things that I like doing.

Hoping you all find a solution that works for you.

John

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@johnbishop

Hello @suzylulu @ujeeniack and @timmckinney — As others have mentioned here we are all different and what works for some may or may not work for others. I too have difficulty walking with my peripheral neuropathy even though I only have the numbness and tingling associated with my neuropathy and have no pain like most of you have. I have no medical training or background but from my research and discussion with my neurologist, the drugs are only for the pain and have zero affect for numbness. Both of my legs are affected. Comfortable shoes that have some support help with the walking but even with this I can't walk more than a few blocks at a time. I do think it's important to keep trying and keep working on strengthening your legs. I have a recumbent exercise bike that I ride for 30 minutes when I first get up in the morning (most mornings).

I have had PN for more than 20 years. It started in the toes like most of you and over the years it gradually worked it's way up to just below the knees. I take over the counter supplements I found through a closed Facebook group – Solutions to Peripheral Neuropathy Pain & Discomfort. They also have a website and have 501c3 status – http://solutions2pnpd.com/. I have been taking them since Sept 2016. By December 2016 the numbness went from just below the knees to just above the ankles and I've made no progress since then…but it's a win for me because it hasn't gotten any worse like my neurologist said it would so I continue to take the supplements. The group is over 7,000+ and many have successfully gotten off of all drugs and no longer have the associated pain with PN. If I can make one important point is that each of us should do our own research as well as be our own advocate when it comes to our health. There are a lot of products, companies, groups, etc. out there that are making money selling us stuff that may or may not help.

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

I also think nutrition plays a big part in the cellular health of our bodies so I try to stay away from all processed foods but I'm not perfect with it. I also try to buy organic when possible and eat a lot less red meat than I used to eat. I've also found that I can't do a lot of things I used to be able to do so I try to live within my limitations and find other things that I like doing.

Hoping you all find a solution that works for you.

John

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I just saw an interesting article from the Foundation of Peripheral Neuropathy email I received that I thought I would share here:

Walk Away from Nerve Pain – Neuropathy, a common complication of diabetes, was once thought to be untreatable. Today, a variety of treatments and strategies are available to ease the discomfort.
https://www.brainandlife.org/the-magazine/article/app/14/2/18/walk-away-from-nerve-pain-neuropathy-a-common-complication-of

More new research:
Molecule May Be Key to Pain Relief in Diabetic Neuropathy
http://news.feinberg.northwestern.edu/2018/04/molecule-may-be-key-to-pain-relief-in-diabetic-neuropathy/

John

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