Anyone here dealing with peripheral neuropathy?

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

Hi Angie @angiepainter — welcome to Connect. I also have peripheral neuropathy but I only have the numbness. There is another discussion you may want to join in and meet other members who are discussing chemo induced neuropathy.

> Groups > Cancer > Does anyone have a treatment for Neuropathy due to chemo
https://connect.mayoclinic.org/discussion/does-anyone-have-a-treatment-for-nueropathy-due-to-chemo/

I take over the counter supplements that have helped me some and have helped others with the pain from neuropathy. You can read my story here in an earlier post on Connect for what helps me: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

You mentioned that you have tried physical therapy. Have you heard of myofascial massage therapy? There is a great discussion here about how it helps with the pain associated with neuropathy and other conditions:

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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After I had 2 strokes in 14 then along came neuropathy. Neuropathy seems to attach itself to anything that will allow it. The last time I increased Gabapentin, for the pain, I had dizziness so I went back to what I was taking, I feel the pain was better. The pain I have is all over, the right foot, then the left calf, then nothing for a while. I wake up in the morning burning all the way to my waist, the skin is not hot but I'm still burning. Neuropathy is "so much fun".

mlmcg

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My pain management doctor is recommending two pain reducing procedures. One is RF ablation, which is burning the nerves coming out of the spinal column, and the other is neurostimulation. She says neurostimulation is particulary good for peripheral neuropathy. Has anyone else tried these techniques and do they work? What are the risks?

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@cwallen9
In response to your question regarding having tried neurostimulation, I read on the Mayo website how one of its employees had tried the Calmare Treatment Therapy (aka Scrambler Therapy) with great success for CIPN… so I gave it a try. I personally found it to be physically overwhelming and gave up after two treatments. I think it must depend a lot on who is doing the procedure — how well-trained the person is with the equipment. It is not covered by Medicare, by the way, so treatments are out-of-pocket. (I couldn't get out of there soon enough….)

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This will b my first time. Do I need to bring along someone with me or no? Thank u

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@cwallen9 here is the Mayo Clinic story @elizm mentioned about the scrambler.

Breaking Away From Pain With the Help of ‘The Scrambler’
https://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler/

Hello Tasha @ttesch2000, I see you just joined and I would like to welcome you to Mayo Clinic Connect. You are asking if you need to bring along someone with you. Do you have an appointment for treatment at one of the Mayo Clinic locations? You should be able to get your question answered by talking with the appointment coordinator. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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@elizm

@cwallen9
In response to your question regarding having tried neurostimulation, I read on the Mayo website how one of its employees had tried the Calmare Treatment Therapy (aka Scrambler Therapy) with great success for CIPN… so I gave it a try. I personally found it to be physically overwhelming and gave up after two treatments. I think it must depend a lot on who is doing the procedure — how well-trained the person is with the equipment. It is not covered by Medicare, by the way, so treatments are out-of-pocket. (I couldn't get out of there soon enough….)

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Your procedure sounds like periodic treatments. In this procedure, they implant a wire along your spine that constantly stimulates the spinal chord to mask the pain signals. There is a controller that they implant in you that you can control the intensity via a smart phone. They try it for four days with the controller outside your body to see if it works before they implant it. A Johns Hopkins paper gave it good reviews. I am not sure of the risks when they put the wire near your spine.

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@angiepainter

Hi, I'm Angie and I just found this discussion group. I have peripheral neuropathy from chemotherapy. During my treatments, the neuropathy was just tingling and extrabated by cold. Now it is intense pain and numbness in my hands and feet. My last treatment was in November and I've read that for many, the neuropathy slowly goes away…i am praying this will be the case for.me as well. I was put on lyrica but had severe side effects and am now weaning off…having some issues with withdrawal from that too. I've tried physical therapy, lidocaine patches, CBD oil and ibuprofen but nothing seems to relieve the pain.
Does anyone have any other suggestions? Any help is appreciated.

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Angie, I had base of tongue cancer in late 2014. I had Cisplatin chemo and radiation, which ended in mid-December 2014. By March 2015, I had developed numbness and tingling in my hands, which eventually spread pretty much to the whole upper body. Today, I still have the numbness and tingling in my hands and arms, and even into my shoulders and both ears, but fortunately no pain. I have no lower body symptoms at all. I have a significant loss of dexterity, worse on the left side. The right side did improve some over time.
I have had and tried all kinds of treatment from the very start: therapy, medications, tests, acupuncture, etc. It didn’t help. Nothing has helped.
I ran across an article on clinical trials by a company called WinSanTor. They are using a drug based on perinzepine, an existing medication, called WST-057. It is on a fast rack since perinzepine is already FDA approved. Check them out. It has been mentioned in threads on this site. It sounds promising but may not work for everyone.

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@cbcbasket

Angie, I had base of tongue cancer in late 2014. I had Cisplatin chemo and radiation, which ended in mid-December 2014. By March 2015, I had developed numbness and tingling in my hands, which eventually spread pretty much to the whole upper body. Today, I still have the numbness and tingling in my hands and arms, and even into my shoulders and both ears, but fortunately no pain. I have no lower body symptoms at all. I have a significant loss of dexterity, worse on the left side. The right side did improve some over time.
I have had and tried all kinds of treatment from the very start: therapy, medications, tests, acupuncture, etc. It didn’t help. Nothing has helped.
I ran across an article on clinical trials by a company called WinSanTor. They are using a drug based on perinzepine, an existing medication, called WST-057. It is on a fast rack since perinzepine is already FDA approved. Check them out. It has been mentioned in threads on this site. It sounds promising but may not work for everyone.

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Hi, @cbcbasket – you might also be interested in the Connect Head & Neck Cancer group https://connect.mayoclinic.org/group/head-neck-cancer/

How are you managing the numbness and tingling while you wait for new medications to come on the market?

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@lisalucier

Hi, @cbcbasket – you might also be interested in the Connect Head & Neck Cancer group https://connect.mayoclinic.org/group/head-neck-cancer/

How are you managing the numbness and tingling while you wait for new medications to come on the market?

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I have sort of become accustomed to it, as weird as that sounds. It is literally constant. The numbness rears its ugly head when I cut myself or something like that, and don't feel it.
The thing I notice much more is the loss of dexterity in my hands, because we use them all the time, so it's a constant reminder. That and the loss of upper body strength, which I notice every day.
Over the last few years I have plateaued; no better, no worse, or maybe some better in the right hand. That's why I still hope.
Thanks for the reference.

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@angiepainter

Hi, I'm Angie and I just found this discussion group. I have peripheral neuropathy from chemotherapy. During my treatments, the neuropathy was just tingling and extrabated by cold. Now it is intense pain and numbness in my hands and feet. My last treatment was in November and I've read that for many, the neuropathy slowly goes away…i am praying this will be the case for.me as well. I was put on lyrica but had severe side effects and am now weaning off…having some issues with withdrawal from that too. I've tried physical therapy, lidocaine patches, CBD oil and ibuprofen but nothing seems to relieve the pain.
Does anyone have any other suggestions? Any help is appreciated.

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Hi Angie, I also have excruciating pain from neuropathy in my feet. I have throbbing, jabbing, stabbing, extreme heat, and toes that have very bizarre sensations. I use a CBD salve that I put on my feet that saves me. I do not know what I would do with out it. It is called Ananda Hemp from the Ananda Hemp Company. It is Specturm Salve 125, 25 grams, and if I remember it costs about twenty five dollars. It is from the hemp plant, but contains no THC. I find it fabulous for pain, and believe me, I have tried many things. You can order it on line, and it comes to your house within a week, or less. Perhaps give it a try. My toes are the worst, They tend to stiffen and throb terribly, and the salve just loosens them and makes them feel normal. A blessing from God. Lori Renee

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@steeldove

Sophia86, I hate to sound so negative, but I've never heard of anyone recovering from the nerve damage of neuropathy, especially when you've had it for so long. When I lost feeling in both legs and feet last year, I had to stop driving, but was determined to find a way to get back to driving. My answer is the Kempf electronic hand controls that I had installed on my little Prius C. Since getting back the car with the Kempf equipment in late July, I've driven almost 2,000 miles, including a roundtrip from Springfield, MO, to Rochester, MN. My advice is to get a doctor to prescribe a Driving Evaluation. From there, you decide what will work for you. I found that the mechanical equipment I tried was not the answer for me, but when I tried the electronic equipment, I found it so intuitive that I was comfortable with it after five minutes. It's expensive, but so very worth it. The photo shows the new equipment on my car. Incidentally, I'm 80 years old.

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@steeldove
Hello!
John direxcted me to your post.
I have neuropathy and my doctors told me I can no longer drive.
I am thinking of retrofitting my car with hand controls.
Can you please tell me how I go about having it done?
You mentioned getting a drivng eval. Is that for insurance to help pay?
You also mentioned different kinds.
Lastly, if it is not too personal, what was the cost?
I understand that they type and year of car, as well as where I live will have an impact on the cost.
It's OK is you do not want to reveal that info, or, if you like, you can PM me.
Thank you!
Ronnie (GRANDMAr)

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@johnbishop

Hi Jim (@jimhd), I'm really happy to hear the spinal cord stimulator is giving you some relief from pain. If it works it is so much better than the drugs used for neuropathy pain symptoms. The drugs just mask the pain and a lot of the times you have to up the dosage to keep the pain at bay. They really do not address the problem – damaged nerves which cause the pain signals to be sent to the brain.

I do not have the pain but I have had the numbness in my feet and legs for over 20 years. It was only last year when I started being more proactive that I became aware of how the drugs work. Because the numbness was just below my knees I started to worry and I asked my doctor about lyrica (you know all those TV ads glorifying it) for my undiagnosed neuropathy. She put me on gabapentin and after a month I went back and told her it wasn't doing anything for me. She had a consult with the Mayo primary care doctor team and another doctor quizzed me on my symptoms. When I told him I didn't have any pain but only the tingling and the numbness, he told me the gabapentin (generic lyrica I think) only addresses the pain and does nothing for the numbness. My primary care doctor had me get a couple of different MRIs and the EMG before I could see the neurologist. After I met with him, he diagnosed that I had idiopathic small fiber peripheral neuropathy and I was one of the "lucky" ones that only had the numbness symptoms without the pain. He also burst my bubble by telling me there are no topicals, creams, medications that will address numbness. I left that appointment pretty depressed and started my search to learn as much as I can about my SFPN.

I learned there are a bunch of companies and folks with neuropathy treatments looking to take your money and it's up to you to do your own research and avoid scams. Fortunately there is a lot of information on how to avoid scams but it's out of sight, out of mind for a lot of folks. Here are the ones I've used:

Quazar's wonderful 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/consumerupdates/ucm278980.htm
You can also link to this great resource from 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
That said, I have found something that works for me and has helped a lot of folks with PN get off of the pain medications. I was skeptical at first and took the list of supplements and vitamins to my doctor who shared it with the Mayo pharmacist to get his feedback on any interactions. His only comment was he thought the omega 3s in the list was pretty high and thought it should be less. But again, I'm the one with the health issue and it's my body so I took his input and did some further research and found that it was within guidelines of the numbers for omega 3 supplements for treating what ails me according to information on the Mayo Clinic's website:
http://www.mayoclinic.org/drugs-supplements/omega-3-fatty-acids-fish-oil-alpha-linolenic-acid/dosing/hrb-20059372
This is the website for Facebook Group I found – Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) – http://www.facebook.com/groups/spnpd – website: http://solutions2pnpd.com/. It has been a blessing for me to find the group. I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I haven't made any more progress since December but I'm OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse – in other words there is nothing I can do to fix it. Others in the group with pain that had them bedridden have reported they are now able to live a normal lifestyle and have been able to taper off the drugs once they were on the full protocol and started feeling better. If you do decide to take a look and join the group, please read all of the information.

Hoping all of my neuropathy friends find a treatment that works for them!

John

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Exactly what supplements are you taking? Dose and strength? I have ideopathic Neuropathy and do not want to take Px drugs. I have a shelf full of vitamins. But would like to know what worked for you.

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