Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@lorirenee1

Where was your pain? I have never heard of scraping calves before. Can you tell more about this treatment? Thanks, Lori Renee

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I’d never heard of it before, I think it is a newer technique. It involves rubbing a flat disc along the muscles, it was painful for me, but so worth it in the end. My PN was in my feet and ankles, they were numb, my feet were excruciating. It was progressing up my legs.

@dutchman09

Congratulations! Your very lucky. I went to a chiropractor for 13 weeks (twice a week) during which I placed my feet on a vibrating pad for 5 minutes then sat in a chair, legs raised to have a fluctuating, vibrating laser flash on my legs from the knees down for 15 minutes. It didn't help. My feet still get hot, cold and numb but my more frustrating problem is the way it has effected my balance.

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I feel lucky. He is young, just out of chiropractic college, with all the newest techniques.This scraping gave immediate relief.

@juchilds
The Graston Technique: An Instrument Assisted Soft Tissue Manual Therapy

I am suffering with this too and having a hard time finding a diagnosis. I know that speed is of the essence in non-idiopathic cases so am very frustrated.

I have peripheral neuropathy in my left foot that has now spread up to my shin. It all started with either bad sprain or worse surgery in my left foot way back in 1998. Been through most therapies. I had surgery that really helped for several months. I was put on Lyrica / Cymbalta as well as lidocaine/prilocaine cream after that – which was a year and a 1/2 ago. But now that has stopped working. Going back to more nerve blocks – I had "permanent" nerve block that brought relief for years but that was back when the pain was in about a quarter shaped area. Its much larger now. I am getting an MRI next Friday and I see the doctor about the nerve block later this month. I am new to here as well. I have been living with this for decades and fear I am running out of affordable options. I am hoping to find some ….hope????

@martid

There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo or something else? There are prescription meds that work for some & also have some unpleasant side effects for some. My husband takes Gabapentin and has no problem with it. I tried it, and it did help some, but I was constantly dizzy. It was a major problem if I got up in the middle of the night. It did not improve enough to put up with the side effect.

What kinds of issues are you dealing with? I understand it can be very different from one person to the next. Whatever, it is uncomfortable, can certainly cause us to be unsure on our feet and be very frustrating. I hope you find something that helps. I am 3 years out from taking Taxotere, which is what caused mine. It is better but still a pretty major issue. I have it in both feet and both hands.

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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.

@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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This condition seems to be different for each of us and different medications seem to work for some of us and not for others — still, we are sharing information and encouragement and trying to help each other.
When I miss a dose of lyrica or gabapentin, I start to feel unmedicated neuropathy, not withdrawals from lyrica or gaba. It is extremely painful.
My neuropathy, like yours, started out with needle-stick feelings and tingling, then last July it suddenly escalated – it's been getting worse since then and the amount of Lyrica and gabapentin I have to take to keep the pain at bay has been increased to almost the limit of what 'the law' allows.
I don't know what 'the law' expects us to do after we've reached their imposed maximums – kill ourselves? I don't know why we're letting politicians 'practice medicine without a license' at all.
My neurologist says that I need to find a Pain Specialist. So far, I have had no luck finding one that takes medicare plus humana on the east coast of Delaware.
Thank you all for your input. Peggy

@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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@angiepainter
I, too, have CIPN which I developed in the fall of 2017. I have spoken to oncologists and neurologists and read as much as I can, and no one seems to know… it may go away or it may not. I was unable to tolerate the various medications suggested (like gabapentin, lyrica, etc.) so I went to a doctor of Chinese medicine and acupunturist who suggested an herbal pill called Zhi Bai Di Huang Wan which traditionally is given to women going through menopause to cool off their power surges. At last, I could sleep at night!

People in my cancer support group also suggested CBD oil which comes in various ratios to THC and in various forms (soft gels, balms, etc.). The balm was a good short-term help. Topricin's Fibro Cream lasted longer for me (you can obtain it easily on Amazon) which is mostly arnica.

Then I came across a neurology blog in Europe where various doctors were noting their luck with an endogenous fatty acid amide called Palmitoylethanolamide (PEA) for all forms of neuropathic pain, and it has been a life-changer. I take it twice a day (800 mg total; but up to 2,000 mg is often used for CIPN) and it keeps the burning under control (except after aerobic exercise or a glass of wine, both of which seem to set if off). When I first started taking it, I also kept taking the herbs; then could omit the herbs after about 3-4 weeks. Also, last September, I only could find it (unadulterated) in the Netherlands. Now, apparently, there are various U.S. distributors. Even my PCP is taking it for his neuropathy these days after hearing about my success with it. All natural, there are absolutely NO side effects which is a HUGE blessing.

Wishing you luck!

@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 @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/

@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

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?

@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….)

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

@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.

@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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