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Poly Autonomic Idiopathic Neuropathy (PAIN)
Neuropathy | Last Active: Nov 2 8:37am | Replies (10)Comment receiving replies
@clutch541
I can relate. I have SFN but not large fiber. Idiopathic. Neurologists and rheumatologists have not really been of much help to me the last 8 years. They do not know how to cure or treat SFN other than prescriptions (I also can’t stand gabapentin or Lyrica side effects so I don’t take them). If they can identify diabetes or vitamin toxicities or deficiencies, that is what they may focus on to stop the progression.
The Covid shots definitely caused many neurological problems in addition to heart/lung (my experience with 1st 2 Pfizer shots were difficulty breathing and 3 “mini” heart attacks that left permanent damage to my heart). I also believe virus infections that linger throughout life wreck havoc on our neurological system plus toxins in air, water, food supply, packaged foods, etc.
I really do think my taking alpha Lipoic acid plus Acetyl l carnitine plus magnesium has helped keep my SFN under control. I take vitamin b12 because I am mostly vegetarian. Have you tried any supplements? Neurologists won’t tell you about them as they would rather push gabapentin, Lyrica, muscle relaxers, antidepressants, etc. I researched on my own and my symptoms improved and I told my neurologist and he said, “that’s good…I heard they helped some!” Why he didn’t share that information with me I do not know.
Have you had your spine checked for any compression in your neck or lower back?
Replies to "@clutch541 I can relate. I have SFN but not large fiber. Idiopathic. Neurologists and rheumatologists have..."
@dlydailyhope @clutch541
After the car accident < 30 years ago I had spinal compression tests that found a < 10% restriction at L4 L5. They did not recommend surgery opting for PT to provide help. Which it did somewhat. 5 years later is when the neuropathy started. Neuropathy was just being studied back then, but RLS was “known” and I was provided a couple of meds before landing on gabapentin. >10 years later, I was at Cleveland Clinic Weston being told that I must accept my “frailties” and here are your pills.
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Things in my past that has helped.
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RSO oil is a kind of THC (pot) that is NOT smoked. You can get it in a pill form or in its oil form to blend in with food (I use butter as the blending agent). You can even make chocolate with it. I will only mix a specific blend, so I always know how much I am taking. I only take it for sleep or pain days & I intend to take it easy. BTW, I get 3-4 hours sleep & can actually dream. This is good for me.
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Musical meditation that occupies your mind & covers over the endless tinnitus. I find my headache side effects can be limited this way.
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I have other “strange” therapies that work.
I have slept outside on my 3 season lanai since I started kicking in bed (actually bruising my wife) & had even started falling out of bed. There is just something about being outside that is calming.
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Be careful of supplements for neuropathy. If you have a heart or other nervous system disorder as well, you could be at risk.
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@dlydailyhope
Thanks for your prompt reply. Yes, the neurologists never offer alternatives. Cleveland Clinic said there is not enough funds to research alternative healthy options. approximately over 180 million neuropathy suffers and yet nothing but a drug for seizures developed back in 1983. Lyrica has even more side effects. I did have an MRI of the spine and basically my S1 joint causing some back pain but no severe compression. I try to keep my Diest low sugar since that is a high inflammatory factor. I had 9 ALA IVs last year but didn't help that much. I am not a diabetic. Will pursue gluten free option as that has been mentioned on this site.