I was on Gababentin 100 mg.po/TID for small fiber neuropathy in my feet for three years till I found Sanexas treatment...which works great along with some other life style changes...
Me thinking of getting a Sanexas machine at my own house and treat my self X3/week, plus B complex vitamins special blend for neuropathy...
I’ve had nine years of PN in my legs and hands. When the nerves in my feet were dying due to chemo I started and then switched from gabapentin into Lyrica 10 mg very low dose and cleared some and then all of my pain immediately. But as two other people mention I had dark thoughts and even threw a punch the first day I took it (but I was playing pick up basketball and somebody doubted my defensive effort ) so I got off everything and I’ve taken nothing for pain since.
Here are two things that really help me a lot. Walking about 7 to 8000 steps a day in good new balance shoes. weightlifting, especially leg presses that really pushes the blood through the legs helps immensely as well.
I also found somebody here quoted a Cleveland clinic study recommended PQQ and CoQ10. I’m taking the double Wood PQQ and CoQ10and after about a week the progression of PN in my hands and legs seem to stop completely.
Recently, I started taking a liquid B complex from double wood and found that my loose bowel problems disappeared as well as giving me about 30% more energy and clarity all day.
I think a combination of chemotherapy and Moderna Covid shots have caused my immune system to be degraded.
I think the B complex liquid from double wood is rebuilding my immune system.
I’m thinking of starting a website that puts together supplements, shoes, bathroom safety rails, self-help chat and research links with a good search tool built-in. I would like some feedback if anyone here would be interested in testing such a website.
Any suggestions people have for a website? I’ve had some people mention more esoteric things for health and well-being, which I’m not a fan of, but would consider if people think it’s worthwhile.
Calmare Scrambler Therapy looks at first like a tens unit, but goes deeper into the nerves leading from the location of your pain up to your brain. It “scrambles” the nerves so that by the time it reaches your brain, it tricks your brain into not feeling pain. It’s a non-invasive treatment. It’s a series of 10 one hour sessions. 70-80% of people suffering from neuropathy or complex pin syndrome are helped,greatly resolving their pain. Unfortunately the pain usually returns in 6-12 months. Then you go in for booster treatments of 3 sessions which returns your brain into not recognizing the pain. Unfortunately it isn’t approved by health insurance although the procedure is FDA approved and used by Johns Hopkins Hospital, the Mayo Clinic, and there are some doctors and chiropractors throughout our country and Europe. If you look up Scrambler Therapy, it will be explained better than I can explain it. I want my husband to try it, but at this time he says he can’t endure the one hour ride back and forth every day for ten days. But I will get him to do it since the meds he’s been taking has not helped. Good luck to you.
I've had idiopathic peripheral neuropathy for about 20 years now. First drug I used was Gabapentin. Gradually worked up to maximum daily dose of 3600 mg but it wasn't really giving enough relief to be at all functional. Went to see a different pain specialist and went from Gabapentin to Lyrica. Marginal Improvement but nothing exciting. Then Dr asked if I had tried Duloxetine which is Cymbalta, and I had not. Cymbalta was added to the Lyrica and I felt a significant Improvement. This was back in 2011. Pain has gradually continued to increase or else I have built up an immunity to treatment. My current medications are 600 mg of Lyrica, 90 mg of Cymbalta, 40 mg of oxycodone, 2500 mg of Tylenol and almost constant use of a spinal cord stimulator. Tonight I was looking at pain pumps and Mayo Clinic popped up so thought I would drop into this forum again. I got a prescription for medical marijuana that I never filled because it's not covered by insurance or Medicare now. I think I'm about down to the bottom of the well as far as options go. I've also tried other things over the years that really had no effect for me like acupuncture or a compounded ketamine cream that was made at Mayo Clinic but none of those really did anything. Unfortunately it seems to be hit and miss for what might or might not offer any relief not only from one individual to another but also at different time periods for a single individual. Best wishes that you find something to help
Hi @camsrud1, Welcome to Connect. I thought I would pop in while you wait for @einer to reply. I only have numbness and a little tingling with my idiopathic peripheral neuropathy but I will be 82 in a couple of months and my symptoms started in my late 40s with my toes feeling numb. I never bothered have a nerve conduction study because was told all of my primary docs that it's probably nerve damage but nothing can help with the numbness so I never had the tests. Then as it keep progressing and got into my ankles and started going up into the legs in 2016 I decided I wanted to know and had the EMG and nerve conduction study but didn't have the nerve biopsy. Sadly, I got the same answer from my Mayo neurologist that he didn't have anything that helps with the numbness. Actually, that is why and how I found Connect - searching for what might help. I shared my neuropathy journey in another discussion here along with other members - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.
Have you setup an appointment with a neurologist? What symptoms do you have now?
Hi @camsrud1, Welcome to Connect. I thought I would pop in while you wait for @einer to reply. I only have numbness and a little tingling with my idiopathic peripheral neuropathy but I will be 82 in a couple of months and my symptoms started in my late 40s with my toes feeling numb. I never bothered have a nerve conduction study because was told all of my primary docs that it's probably nerve damage but nothing can help with the numbness so I never had the tests. Then as it keep progressing and got into my ankles and started going up into the legs in 2016 I decided I wanted to know and had the EMG and nerve conduction study but didn't have the nerve biopsy. Sadly, I got the same answer from my Mayo neurologist that he didn't have anything that helps with the numbness. Actually, that is why and how I found Connect - searching for what might help. I shared my neuropathy journey in another discussion here along with other members - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.
Have you setup an appointment with a neurologist? What symptoms do you have now?
It does seem to show some promise...
-- Platelet-rich fibrin membrane nerve guidance conduit: a potentially promising method for peripheral nerve injuries: https://pmc.ncbi.nlm.nih.gov/articles/PMC7176438/
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I was on Gababentin 100 mg.po/TID for small fiber neuropathy in my feet for three years till I found Sanexas treatment...which works great along with some other life style changes...
Me thinking of getting a Sanexas machine at my own house and treat my self X3/week, plus B complex vitamins special blend for neuropathy...
I’ve had nine years of PN in my legs and hands. When the nerves in my feet were dying due to chemo I started and then switched from gabapentin into Lyrica 10 mg very low dose and cleared some and then all of my pain immediately. But as two other people mention I had dark thoughts and even threw a punch the first day I took it (but I was playing pick up basketball and somebody doubted my defensive effort ) so I got off everything and I’ve taken nothing for pain since.
Here are two things that really help me a lot. Walking about 7 to 8000 steps a day in good new balance shoes. weightlifting, especially leg presses that really pushes the blood through the legs helps immensely as well.
I also found somebody here quoted a Cleveland clinic study recommended PQQ and CoQ10. I’m taking the double Wood PQQ and CoQ10and after about a week the progression of PN in my hands and legs seem to stop completely.
Recently, I started taking a liquid B complex from double wood and found that my loose bowel problems disappeared as well as giving me about 30% more energy and clarity all day.
I think a combination of chemotherapy and Moderna Covid shots have caused my immune system to be degraded.
I think the B complex liquid from double wood is rebuilding my immune system.
I’m thinking of starting a website that puts together supplements, shoes, bathroom safety rails, self-help chat and research links with a good search tool built-in. I would like some feedback if anyone here would be interested in testing such a website.
Any suggestions people have for a website? I’ve had some people mention more esoteric things for health and well-being, which I’m not a fan of, but would consider if people think it’s worthwhile.
Thank you.
Pablo MM
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Calmare Scrambler Therapy looks at first like a tens unit, but goes deeper into the nerves leading from the location of your pain up to your brain. It “scrambles” the nerves so that by the time it reaches your brain, it tricks your brain into not feeling pain. It’s a non-invasive treatment. It’s a series of 10 one hour sessions. 70-80% of people suffering from neuropathy or complex pin syndrome are helped,greatly resolving their pain. Unfortunately the pain usually returns in 6-12 months. Then you go in for booster treatments of 3 sessions which returns your brain into not recognizing the pain. Unfortunately it isn’t approved by health insurance although the procedure is FDA approved and used by Johns Hopkins Hospital, the Mayo Clinic, and there are some doctors and chiropractors throughout our country and Europe. If you look up Scrambler Therapy, it will be explained better than I can explain it. I want my husband to try it, but at this time he says he can’t endure the one hour ride back and forth every day for ten days. But I will get him to do it since the meds he’s been taking has not helped. Good luck to you.
@einer
When you were first diagnosed did you have issues show up on an EMG/NCS? Also if you are OK answering what were your early symptoms?
Thank you,
CA
Hi @camsrud1, Welcome to Connect. I thought I would pop in while you wait for @einer to reply. I only have numbness and a little tingling with my idiopathic peripheral neuropathy but I will be 82 in a couple of months and my symptoms started in my late 40s with my toes feeling numb. I never bothered have a nerve conduction study because was told all of my primary docs that it's probably nerve damage but nothing can help with the numbness so I never had the tests. Then as it keep progressing and got into my ankles and started going up into the legs in 2016 I decided I wanted to know and had the EMG and nerve conduction study but didn't have the nerve biopsy. Sadly, I got the same answer from my Mayo neurologist that he didn't have anything that helps with the numbness. Actually, that is why and how I found Connect - searching for what might help. I shared my neuropathy journey in another discussion here along with other members - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.
Have you setup an appointment with a neurologist? What symptoms do you have now?
I have just learned about platelet rich fibrin. Sounds promising! Has anyone else had experience with it?
I wasn't familiar with it but there are some members who have mentioned it. Here's a link that shows the comments from other members - https://connect.mayoclinic.org/search/?search=PRF.
It does seem to show some promise...
-- Platelet-rich fibrin membrane nerve guidance conduit: a potentially promising method for peripheral nerve injuries: https://pmc.ncbi.nlm.nih.gov/articles/PMC7176438/