Poly Autonomic Idiopathic Neuropathy (PAIN)

@okaynowwhat
Are you male or female and how old are you? Have you had your thyroid checked and iron levels? Have you been tested by a neurologist for small fiber neuropathy skin punch biopsy?

How are your oxygen levels? Have you had a gastroenterologist do an endoscopy? Have you had your hormones tested levels checked?

Did you ever have COVD and the shots? This could be behind some of your symptoms. Have you been tested by an immunologist for long Covid?

@okaynowwhat - Quite a few members have shared their experiences with polyneuropathy and autonomic neuropathy. If you would like to scan through the discussions and comments while you wait for others to respond, here is the search of Connect with the links - https://connect.mayoclinic.org/search/discussions/.

There are quite a few members who have mentioned body sweats with their autonomic neuropathy - https://connect.mayoclinic.org/search/.

@dlydailyhope
I am male and had most of those tests at the Cleveland Clinic in Weston about 18 years ago. I had only the first Moderna covid vaccine shot. I am being told by every resource that the nerves are now dead after almost 30 years since the suspected car accident that caused the trauma.

@dlydailyhope
I was diagnosed from a punch biopsy done by the Cleveland Clinic on my eg with showed I have SFN, EMG showed I do not have large fiber neuropathy. Doesn't matter really as the only treatment they offered by the neurologist there was to increase the gabapentin dosage. I suspect my condition was caused by a Moderna booster shot back in the late 2022 period. The shot was followed by 5 months of a rash all over my body teared y steroids and than 10 months of dupixent shots. The SFN progressed from there. Oddly have it around my torso legs and partly upper torso. Not hands and feet like most. Not diabetic. Currently trying Low Dose Naltrexone and trying to get off of the Gabapentin; hate the side effects. Neurologists just keep upping the dosage. Also, take a low dose of Tramalod.

@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?

@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.

@clutch541 The Foundation for Peripheral Neuropathy has some good information on supplements, diet and lifestyle that can help those of us with neuropathy.
https://www.foundationforpn.org/blog/

Hi, I have autonomic neuropathy and many other forms as well. My neurologist use to say...anything in your body that operates automatically can be effected by AN. I go through my body being unable to regulate temperature, but they never took that symptom seriously until I became post menopausal and the symptom became serious. They still can't seem to do anything for it. However, when this symptom first started, I would sweat like crazy...to be clear, at that time ii was indeed menopausal. When the AN kicked into playing with my thermo regulation, because of AN I could no longer sweat and was in danger of heat stroke. So keep in mind, sweating is a good thing. I lost my ability to digest food normally. The peristalsis in my esophagus and bowels was severely diminished and my stomach was in trouble. 3 feeding tubes later, I have had them removed for quality of life. I struggled with complications constantly and just didn't want that. They did help with digestion and nutrition and now I struggle with malnutrition and dehydration. My main issue with AI is that I have moved into heart involvement with the vagus nerve being involved. My blood pressure is very extremely affected going from 220/126 to 55/30. It is difficult to live with in every aspect. I now use a walker as falling is a main side effect of that and I keep breaking bones. I have palpitations and tachycardia and now even a pleural effusion. The heart problems keep piling up. This has been the biggest trial of my life.
To diagnose my autonomic neuropathy, I had a QSART. It is a very long test that is physically demanding of the different systems in the body and they can tell if they are malfunctioning. There are different things that can cause 1 or 2 systems to malfunction, but a QSART can be definitive. Not just any place can do them and if they decide to do it on you...you might have to travel. So be prepared for that. I cannot diagnose your symptoms, so that is why I tried to highlight my own. And those are just the highlights. AN has so many symptoms that it can overwhelm. I wish you the best.

@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.

Cardiac autonomic neuropathy aka CAN
BP goes up and down. I have bradycardia (too slow) and tachycardia (too fast).
It has affected by bladder and kidneys.

The only difference is mine is autoimmune.
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