Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

I’ve been living with idiopathic polyneuropathy since my mid-40s, over 20 years ago. With the exception of a three-month period in late 1994, the symptoms have never disappeared. Both feet and legs are affected, as well as occasionally my right hand and arm. I’ve learned to deal with the tingling, electric-like shocks and pins-and-needles sensations. I’m still ambulatory, so I count my blessings. My chief complaint for the past two years is the foot and leg cramps I get, mostly in the evening. I take 1200 mg of gabapentin daily, and I’ve been drinking tonic water every evening. I’ve heard of the pickle juice remedy and have taken the Hyland’s remedies also. The cramping seems to be exacerbated by exercise done earlier in the day, and it doesn’t have to be excessive or strenuous exercise. Simply taking a walk on my lunch hour is enough to cause cramping at 7:00 in the evening. It’s strange, but I believe the gabapentin is helping; I haven’t tried anything stronger and would like to stay away from opioids, if possible. Has anyone tried accupunture, accupressure or hypnotherapy? Many thanks, everyone.

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@magg

I’ve been living with idiopathic polyneuropathy since my mid-40s, over 20 years ago. With the exception of a three-month period in late 1994, the symptoms have never disappeared. Both feet and legs are affected, as well as occasionally my right hand and arm. I’ve learned to deal with the tingling, electric-like shocks and pins-and-needles sensations. I’m still ambulatory, so I count my blessings. My chief complaint for the past two years is the foot and leg cramps I get, mostly in the evening. I take 1200 mg of gabapentin daily, and I’ve been drinking tonic water every evening. I’ve heard of the pickle juice remedy and have taken the Hyland’s remedies also. The cramping seems to be exacerbated by exercise done earlier in the day, and it doesn’t have to be excessive or strenuous exercise. Simply taking a walk on my lunch hour is enough to cause cramping at 7:00 in the evening. It’s strange, but I believe the gabapentin is helping; I haven’t tried anything stronger and would like to stay away from opioids, if possible. Has anyone tried accupunture, accupressure or hypnotherapy? Many thanks, everyone.

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Hi Margaret and welcome to Mayo Connect.
I’ve had peripheral, and some autonomic, neuropathy for about 15 years supposedly due to Sjogren’s Syndrome. I currently take an immunosuppressant for that but generally for the symptoms due to neuropathy I also take gabapentin but 2400 mg/day and occasional tramadol for breakthrough pain. Of non-standard therapies have you ever tried a TENS unit, local electrical stimulation? Seems to do some good.
Here’s an outfit who exists for such matters and maybe they can give you some ideas. They list some of the things you mentioned.

https://www.foundationforpn.org/living-well/integrative-therapies/

As far as Alternative/Integrative medicine in general, this site is one of the better ones I’ve found. Its cancer-centric but holds a broad range of information.

https://www.mskcc.org/cancer-care/treatments/symptom-management/integrative-medicine/herbs/herbs-botanicals-other-products-faqs

Dealing with PN is frustrating but if you do try some other therapies give them time to work. There are no rules as far as what might or might not work for you so patience is a plus.

Hope this helps

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@magg

I’ve been living with idiopathic polyneuropathy since my mid-40s, over 20 years ago. With the exception of a three-month period in late 1994, the symptoms have never disappeared. Both feet and legs are affected, as well as occasionally my right hand and arm. I’ve learned to deal with the tingling, electric-like shocks and pins-and-needles sensations. I’m still ambulatory, so I count my blessings. My chief complaint for the past two years is the foot and leg cramps I get, mostly in the evening. I take 1200 mg of gabapentin daily, and I’ve been drinking tonic water every evening. I’ve heard of the pickle juice remedy and have taken the Hyland’s remedies also. The cramping seems to be exacerbated by exercise done earlier in the day, and it doesn’t have to be excessive or strenuous exercise. Simply taking a walk on my lunch hour is enough to cause cramping at 7:00 in the evening. It’s strange, but I believe the gabapentin is helping; I haven’t tried anything stronger and would like to stay away from opioids, if possible. Has anyone tried accupunture, accupressure or hypnotherapy? Many thanks, everyone.

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If you have a TENS machne, but have forgotten how to use it, ask any Physical Therapist and they can teach you. Also your doctor can help. @gailfaith

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@magg

I’ve been living with idiopathic polyneuropathy since my mid-40s, over 20 years ago. With the exception of a three-month period in late 1994, the symptoms have never disappeared. Both feet and legs are affected, as well as occasionally my right hand and arm. I’ve learned to deal with the tingling, electric-like shocks and pins-and-needles sensations. I’m still ambulatory, so I count my blessings. My chief complaint for the past two years is the foot and leg cramps I get, mostly in the evening. I take 1200 mg of gabapentin daily, and I’ve been drinking tonic water every evening. I’ve heard of the pickle juice remedy and have taken the Hyland’s remedies also. The cramping seems to be exacerbated by exercise done earlier in the day, and it doesn’t have to be excessive or strenuous exercise. Simply taking a walk on my lunch hour is enough to cause cramping at 7:00 in the evening. It’s strange, but I believe the gabapentin is helping; I haven’t tried anything stronger and would like to stay away from opioids, if possible. Has anyone tried accupunture, accupressure or hypnotherapy? Many thanks, everyone.

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Hi Margaret – there is also a list of supplements put together specifically for peripheral neuropathy. I found the list on the Facebook group – “The Solutions to Peripheral Neuropathy Pain & Discomfort” – (Closed Group – 1700+ members).” more info in a previous post above. I only have the numbness and have not taken any Rx for pain – neurologist told me there isn’t anything for numbness that works. Quite a few people in the group using the protocol of supplements have reported being able to complete get off of the pain meds or reduce the amount they are taking. I have ordered the supplements – all but one through Amazon, which is the R-ALA. I had ordered that through Amazon but found out it’s the 50% S-ALA and 50% R-ALA which supposedly doesn’t work so had to order it through the manufacturers website to get the 100% R-ALA which is better absorbed into the body. I’m planning to start taking the supplements next week and keep a journal to see if it also works to reduce numbness. Will post an update either way – works for me or not. Hope you find some relief. The only other thing I’ve tried which may help is the tens stimulation some others have found helpful. I have a Zopec DT-1200 with the footpads so it’s easy to use – just dial in a program (6 or 8 available on the device plus you can create your own), set the amount of the pulse, then set the timer for the amount of time. I have found it reduces the numbness a little and provides some relief but it doesn’t take it away.

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@magg

I’ve been living with idiopathic polyneuropathy since my mid-40s, over 20 years ago. With the exception of a three-month period in late 1994, the symptoms have never disappeared. Both feet and legs are affected, as well as occasionally my right hand and arm. I’ve learned to deal with the tingling, electric-like shocks and pins-and-needles sensations. I’m still ambulatory, so I count my blessings. My chief complaint for the past two years is the foot and leg cramps I get, mostly in the evening. I take 1200 mg of gabapentin daily, and I’ve been drinking tonic water every evening. I’ve heard of the pickle juice remedy and have taken the Hyland’s remedies also. The cramping seems to be exacerbated by exercise done earlier in the day, and it doesn’t have to be excessive or strenuous exercise. Simply taking a walk on my lunch hour is enough to cause cramping at 7:00 in the evening. It’s strange, but I believe the gabapentin is helping; I haven’t tried anything stronger and would like to stay away from opioids, if possible. Has anyone tried accupunture, accupressure or hypnotherapy? Many thanks, everyone.

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Thanks, John. I’ll take a look at the Sloan-Kettering integrative medicine info. I’m familiar with the Foundation for Peripheral Neuropathy website. In fact, I’m attending a local chapter’s meeting on Sept. 17 at which the director of FPN is speaking. There are a couple of other health care professionals presenting also. If I learn of anything interesting at the meeting, I’ll pass it on.

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Sept 17th meeting for the 20 Year Celebration for the MN Neuropathy Association (www.neuropathy-mn.org). If others in the Minneapolis area want to attend the meeting you need to register soon as it’s a special meeting with box lunches provided that they need to have a headcount. It should be an interesting meeting. If you want the registration form, I can email you a copy.

Here is the agenda:

9:30 – 10:00 am Registration
Coffee or juice and pastries/snacks

10:00 – 10:15 am Opening remarks, announcements

10:15 – 11:00 am Dr David Walk: The Basics of Neuropathy
30-minute presentation with 10 minutes for Q and A

Dr. David Walk is a neurologist at the University of Minnesota Medical Center Fairview with a subspecialty interest in neuromuscular diseases. Dr. Walk currently directs the University of Minnesota’s multidisciplinary ALS and Charcot-Marie-Tooth clinics. Named a “top doctor” by Minneapolis St. Paul Magazine, he believes that the management of neuromuscular disorders requires a team dedicated to providing comprehensive care.
Dr. Walk has been an Associate Professor of Neurology at the University of Minnesota Medical School since 2005 and a staff neurologist at the University of Minnesota Medical Center, Fairview since 1999; he is also the Medical Director of the electromyography laboratory. Dr. Walk’s research interests include ALS and other motor neuron disorders, Charcot-Marie-Tooth disease, and quantitative sensory testing in patients with neuropathic pain. Dr. Walk’s ongoing research projects are focused on ALS as well as sensory evaluation in neuropathy and neuropathic pain.

11:00 – 11:45 am Pam Shlemon, Director of Foundation of Peripheral Neuropathy
The Foundation for Peripheral Neuropathy – What’s new & Living well with PN!
30-minute presentation with 10 minutes for Q and A

Pam Shlemon is the president and executive director of the Foundation for Peripheral Neuropathy (FPN). Founded in 2007, Ms. Shlemon plays a critical role in shaping the research strategy as well as guiding strategic and programmatic direction and spearheading the Foundation’s fundraising programs. To achieve the Foundation’s mission she is fostering collaboration among a national team of neuroscientists and physicians dedicated to neuropathy research and treatment to develop new and effective therapies that can reverse, reduce and one day cure peripheral neuropathy. Ms. Shlemon, who earned her degree in business administration from Eastern Illinois University, has more than 25 years of executive management experience in the health care industry. Prior to joining the Foundation, Ms. Shlemon was the Regional Vice President for ChartOne, a national leader in technology solutions for the healthcare industry. As a top-performing executive, leading major initiatives she was key contributor to enterprise-level planning and decision making. She is also a member of the Board of Directors of Arts Refreshing the Soul, and resides in the Chicago metro area.

11:45 – noon Break, pick up box lunches

noon – 12:30 pm Lunch

12:30 – 1:15 pm Dr William Kennedy – Simple inventions that quantify touch on fingers, vibration on toes and sweating in neuropathy
30-minute power point presentation with 10 minutes for Q and A

Dr William Kennedy: Medical School-Marquette University; Master Degree in Biochemistry-University of Wisconsin; Internship-Philadelphia General Hospital; Residency in Neurology-Mayo Clinic; Professor of Neurology, University of Minnesota
Board certified in 1. Neurology, 2. Electromyography 3. Electroencephalography.
~~Honorary member of the Am. Academy of Neurology and the Am. Neurological Association
~~Lifetime Achievement Award, Am. Ass’n Neuromuscular & Electrodiagnostic Medicine’s highest honor.
~~Selected as a “Giant of Neurology” by the American Academy of Neurology Foundation
~~Discoverer of Hereditary spinal and bulbar proximal spinal atrophy of late onset (called “Kennedy’s Disease”)
~~Author of >150 peer reviewed scientific papers.
Principle interests:
1. Structure of nerves and other organs affected by neuropathy.
2. Invention of fast, simple methods to diagnose and quantify peripheral neuropathy.

1:30 pm Dessert, door prizes, closing announcements

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@magg

I’ve been living with idiopathic polyneuropathy since my mid-40s, over 20 years ago. With the exception of a three-month period in late 1994, the symptoms have never disappeared. Both feet and legs are affected, as well as occasionally my right hand and arm. I’ve learned to deal with the tingling, electric-like shocks and pins-and-needles sensations. I’m still ambulatory, so I count my blessings. My chief complaint for the past two years is the foot and leg cramps I get, mostly in the evening. I take 1200 mg of gabapentin daily, and I’ve been drinking tonic water every evening. I’ve heard of the pickle juice remedy and have taken the Hyland’s remedies also. The cramping seems to be exacerbated by exercise done earlier in the day, and it doesn’t have to be excessive or strenuous exercise. Simply taking a walk on my lunch hour is enough to cause cramping at 7:00 in the evening. It’s strange, but I believe the gabapentin is helping; I haven’t tried anything stronger and would like to stay away from opioids, if possible. Has anyone tried accupunture, accupressure or hypnotherapy? Many thanks, everyone.

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CHECK WITH MAYO CLINIC OR ANOTHER WEBSITE, MAYBE WEBMD.COM,FOR CRAMPING.

I THINK CRAMPING MEANS *DEHYRATIAN AND,OR, MINERAL DEFICIENCY, MAYBE
POTASSIUM OR MAGNESIUM OR ZINC.*

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@magg

I’ve been living with idiopathic polyneuropathy since my mid-40s, over 20 years ago. With the exception of a three-month period in late 1994, the symptoms have never disappeared. Both feet and legs are affected, as well as occasionally my right hand and arm. I’ve learned to deal with the tingling, electric-like shocks and pins-and-needles sensations. I’m still ambulatory, so I count my blessings. My chief complaint for the past two years is the foot and leg cramps I get, mostly in the evening. I take 1200 mg of gabapentin daily, and I’ve been drinking tonic water every evening. I’ve heard of the pickle juice remedy and have taken the Hyland’s remedies also. The cramping seems to be exacerbated by exercise done earlier in the day, and it doesn’t have to be excessive or strenuous exercise. Simply taking a walk on my lunch hour is enough to cause cramping at 7:00 in the evening. It’s strange, but I believe the gabapentin is helping; I haven’t tried anything stronger and would like to stay away from opioids, if possible. Has anyone tried accupunture, accupressure or hypnotherapy? Many thanks, everyone.

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Margaret,
Well now I feel kind of bad that here you are a practicing health care professional and I sent you pretty vanilla stuff. I gather that you are looking for personal testimonials rather than searches? All I can do in that domain is re the TENS. That little thing is my friend, although I go long spells forgetting to use it. Meloxicam is good stuff but as rough as any other NSAID, COX-2 bias or not. I have had acupuncture for back pain and wasn’t particularly impressed. It may have been the practitioner.
By all means fill us fellow suffers in with what you glean from the conference.
Hope this helps.

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@magg

I’ve been living with idiopathic polyneuropathy since my mid-40s, over 20 years ago. With the exception of a three-month period in late 1994, the symptoms have never disappeared. Both feet and legs are affected, as well as occasionally my right hand and arm. I’ve learned to deal with the tingling, electric-like shocks and pins-and-needles sensations. I’m still ambulatory, so I count my blessings. My chief complaint for the past two years is the foot and leg cramps I get, mostly in the evening. I take 1200 mg of gabapentin daily, and I’ve been drinking tonic water every evening. I’ve heard of the pickle juice remedy and have taken the Hyland’s remedies also. The cramping seems to be exacerbated by exercise done earlier in the day, and it doesn’t have to be excessive or strenuous exercise. Simply taking a walk on my lunch hour is enough to cause cramping at 7:00 in the evening. It’s strange, but I believe the gabapentin is helping; I haven’t tried anything stronger and would like to stay away from opioids, if possible. Has anyone tried accupunture, accupressure or hypnotherapy? Many thanks, everyone.

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Oh, no, I didn’t mean to give you the impression that I’m a health care professional, but I can see from the email I sent that you might infer that. I work in the legal profession, actually. What I’m looking for is any feedback on alternative remedies, like acupuncture. I may try it, as I have a referral from a doctor who practices integrative medicine. I’m skeptical, though. The TENS unit is also an option; I have a friend who uses one for sciatica. It seems there are a number of things I haven’t tried yet, so this is a good forum for me to be on. As an aside, my neurologist believes that my neuropathy is a result of Guillan-Barre Syndrome; he thinks I just don’t remember having the flu or upper respiratory infection that led to the neurological symptoms.

Again, I’ll post anything interesting I learn from the Sept. 17 conference and whether the food was any good. : )

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Idiopathic PN, started about 15 years ago with mild numbness in soles of both feet. Has gradually spread to involve entire feet and ankles. Days are generally manageable with 900mg Gabapentin 3x daily and Voltaren (Diclofenac) 3-4 X as needed. Naproxen may be needed in addition and at night when sleep is problematic. Have not visited neurologist in 18 months and wondering if any new therapies would help.

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I have the same problem as you, but with a duration of only 10 years. On a recent post of mine, I explained the great results with Medical Cannabis. If you are in one of the few states allowing it I would heartily endorse it.

Liked by ChefBrown

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Went to Internist yesterday with complaint of pain interrupting sleep numerous times. Rx: Elavil ( Amitriptyline) 25 MG.
Slept soundly with only one trip to bathroom. Groggy for about an hour after getting up, but fully alert after about an hour.
Promising !

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@woods

Went to Internist yesterday with complaint of pain interrupting sleep numerous times. Rx: Elavil ( Amitriptyline) 25 MG.
Slept soundly with only one trip to bathroom. Groggy for about an hour after getting up, but fully alert after about an hour.
Promising !

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Great. Elavil works like magic for some folks and is just a bundle of side effects for others. Keep the dose low. You don’t have any known heart issues right? The side effect list is very long because the stuff has been around for over 40 years at least. Always good to hear when an inexpensive med works.
http://www.mayoclinic.org/drugs-supplements/amitriptyline-oral-route/side-effects/drg-20072061

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Hello Everyone, I have PN in feet and legs and restless leg as well. The Neurologist said that the two often go together. The PN is from Multiple sclerosis. I started Medical Marijuana a few years ago and was surprised at how well it worked for the pain and numbness as well as calming the RL. also another benefit is it helps me sleep better. There are different strengths and different ways to take it not just smoking. I use a vaporizer as it doesn’t burn the material so I get better results without irritating my COPD. There are strains that don’t get you high but work medically. This with 1200ml Gabapentin have made my life livable again as the treatment helps MS as well. I use this because nothing else seemed to work for me. Good luck all.

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Hello @chefbrown, thank you for sharing your story and treatments that are working for you. If you like to read, you might get want to read the book by Dr. Terry Wahls – The Wahls Protocol. She has an amazing story of doing he own research into MS to help treat herself since she has MS. http://terrywahls.com/about/about-terry-wahls/. Thanks again for sharing.

Liked by ChefBrown

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