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Everyone with Peripheral Neuropathy
We all experience pain and loss of feeling in hand feet etc
The reasons for the nerve damage vary with many groups. Simplifying this into two main groups:
(1) Those with progressive conditions like diabetes, alcohol of similar. Naturally the doctors try to treat the cause of the damage probably before they treat the pain
(2) Those with one off damage from toxins, viruses that have damaged the nerves as a one off event - the doctors in many of these cases say idiopathic and offer pain relief.
But we all have pain and reading your comments I suspect that we all have good days, bad days and very often there appears to be no reason.
I think it would be interesting to share the things that excite the pain.
I know if I drink lots of strong coffee, sit cross legged and stop the blood flow on a cold day my chances of pain are much higher. If I drink some red wine on a warm calm day outside they are less. This is not scientific but it could be.
If we had a structure database that we all contributed to we may see strong patterns that could be used to guide people to have less pain.
Anyone interested either technically, financial or as an information contributor? Maybe Mayo Clinic would read the data and comment?
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I have peripheral neuropathy and both feet the levels sometimes reach at 8 plus it's very difficult to go to sleep. I heard about this new process that the VA is using is called axon therapy well my local VA they had no such therapy available so I went outside the VA to Touchstone Medical Center in Medford Oregon that was the closest one to me I've been following acts on therapy for a long time because my feet were getting so bad I was going to Medford I didn't care how much I had to spend it was all out of pocket for me I had a relief in my neuropathy pain for about 7 days then it started back to where it was before so I therefore know now that acts on therapy works and the reason it didn't work on me as I have spinal stenosis and I was given a 50/50 chance of it working at all well during the therapy and 3 days after therapy my pain level for my neuropathy was down from one half to 1, meds were not requred
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3 ReactionsNo relief! How true. I just try to ignore the pain as much as possible. Some days are better than others.
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1 ReactionHello,
So sorry about what you're going through. And you're not alone. I have been experiencing muscle weakness in my knees and have to wear knee braces. And yes, all resaerch indicates that peripheral neuropathy can definitely cause muscle weakness in different areas of the body. Our nervous system is highly intricate and complex. It's by far not understood by the medical field despite all the knowledge out there. Peripheral neuropathy, especially the idiopathic one, is a progressive condition without any concrete cure. All currently available treatments are aimed at slowing down the progression of the condition. Each person displays different symptoms depending on the makeup of our respective bodies. This is a well known and established fact.
All I can suggest to you is to keep your muscles moving despite everything; otherwise, the weakness will get worse.
I wish you the best.
Take care and have
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4 ReactionsCoffee is a stimulant and causes nerve excitement. As an RN we told people not do drink caffeine and stop sugar. In your comment you missed autoimmune neuropathy.
Mine is caused by Lupus,, Sojourns, Hashimotos and connective tissue disease.
I have small fiber neuropathy affects
Cardiac autonomic neuropathy
Autoimmune severe axonal sensorimotor dysautonomia peripheral polyneuropathy
The dysautonomia causes seizures and paralysis along with other problems.
For me it’s frustrating because everyone believes you get neuropathy from diabetes which is a fallacy. I am constantly cutting my fingers and getting stitches because I don’t feel them. I can’t tell how hard I am holding a cup broke a Starbucks cup all over me. I know carry’s hydration flask everywhere I go so I don’t spill water on me. I take it into restaurants where I don’t spill water on me.
My husband has to sometimes cut up my food where I can eat it and I have problems with chocking. I stay freezing cold and carry a cardigan everywhere I go. My feet stay cold so I wear cashmere socks at night where my feet don’t stay cold.
I have lost all feeling below the knees and below the elbows. I have tremors in my hands and legs from the motor neuropathy. Those are not the two main groups there are more groups.
https://www.foundationforpn.org/causes/
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4 ReactionsI just googled it and it does sound promising. Can you elaborate on how it’s helping you? Thank you so much for posting this!
Debbie S
https://www.foundationforpn.org/causes/
Other causes of neuropathy those are not the main cause. Diabetes and other problems.
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1 ReactionGood site worth a read
Don't give up hope. Many people do not die from neuropathy as opposed to cancer and heart disease. I also read in the Post about the development of an inverse vaccine to address autoimmune diseases. I saw a video in which a prominent NY neurologist was urging people to call or write their elected officials to push for money to research neuropathy and find cures. So much is possible in this day and age.
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3 ReactionsI have very bad burning in my feet and legs. All the doctors want to do is give gabapenten. Surely there must be something better to do for neuropathy. I am currently taking Nuphoria Gold.
Mt doctor doesn't even want to discuss supplements. She thinks they are ALL bad for you.
I have heard about many studies to cure neuropathy. But doctors are not open to discussion about it. Any thoughts?
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