COVID vaccines and neuropathy

All of my doctors have said they cannot rule out the vaccine and the timing and symptoms indicate the strong probability that this is an exaggerated response to the vaccine. They blame my previous COVID infection first and foremost as the impetus for what they believe is an exaggerated immune response that caused a series of concerning health problems... none of which I had before. For the purpose of an FDA drug study, that is all that is needed to create a serious adverse event case... the inability to definitively rule out the drug as the cause. No doctor has been able to rule it out and the problems are measurable thanks to labs and various tests they’ve ordered.

I do believe my PCP when he says that he believes that this is an inflammatory response. I want to believe him when he tells me that he believes this is a temporary state and that my body will find health and homeostasis again. Many days that is hard to believe, but I am taking a regimen of OTC meds that have histamine 1 and 2 receptors and it seems to be keeping my symptoms stable. I also agree with my Neurologist’s suspicion that my ANS is involved. After reading an article in the Atlantic on the way COVID impacts breathing and the vasovagel nerve, I have started deep breathing exercises. If nothing else, it feels good. But for some, evidence is mounting that these breathing exercises help stimulate the vasovagel nerve, which positively impacts the ANS and helps it reset. That “reset” helps to heal post-COVID neuropathy and muscle weakness. So the good news is that healing can and is happening, but the downside is that the healing process tends to be very, very slow. Hang in there. Reach out to your vaccine’s safety team and start that conversation.

I also had COVID in December, so that makes me wonder as well. I should do the deep breathing just for stress relieve any way! I hope and pray this is temporary. Taking Celebrex seems to help my pain some, which would make sense if it's inflammatory. I can't wait for my testing to be done to have some answers. Thanks so much for your response.

Unfortunately, the 1st shot of the Pfizer definitely inflamed a pre-existing though mild neuropathy in the feet. By mild, I mean virtually no pain, no problems sleeping, able to walk, run, exercise, lift weights, squat and deadlift without impediment. It has been chronic but stable condition for almost 20 years. it had actually improved a bit over the years with consistent diet, exercise and ALA/B12 supplementation.

Within 30 minutes of the shot, an annoying paresthesia developed in the injection arm. The next day it spread to the other arm. Annoying, not alarming. However, 36 hours later, that mild neuropathy in the feet was no longer so mild. Increased numbness in the toes and balls of the feet(for both feet). Sensory loss spread to the ankles. An intermittent weakness developed in the back of the legs. Not a muscular weakness. No loss of balance or strength(I lift weights every day). 4 days later, it became alarming enough that I began to call around for treatment options. Unfortunately(or fortunately, I suppose), because of my general good health, I have no existing patient relationship with a specialist, or even a GP for that matter(although I do have an anti-aging doc). I'm virtually locked out from seeking immediate treatment from a medical specialist. Urgent Care can't treat this sort of thing. And they don't give referrals. So, self-treatment it is. This is almost certainly an adverse immune response to the inflammation from the shot. My understanding was that the extended soreness in the arm was supposed to come on the 2nd shot. But I experienced it with the first shot(5 days for the soreness to fully subside). So, around day 5, I undertook an extended 3 day fast as a crash course to reduce the inflammation. That mitigated the symptoms, but the severity returned the next day after breaking the fast. I did another 28 hour fast, but I'm fasted out for the time being. I lost about 10 lbs, and I don't want to get any thinner. I was already pretty lean to begin with. I've ordered up some specialty lab work to check for any irregularities(the usual lab work for lipids, thyroid,CBC, CMP are always normal). I'm not diabetic. Overnight blood glucose with the meter is always around low 90s(mg/DL), and it rarely rises above 120 even after a full meal. However, it takes 36+ hours of fasting to get it below 90 and 50+ hours to get it into the 70s. I'm not sure that is exactly healthy normal. More often than not, blood glucose irregularities are ultimately at the root of most neuropathies.

I had a subarachnoid brain hemorrhage in November 2017 and 2 clots. After a 6 months in a rehab hospital I was discharged and didn't feel much discomfort except for muscle weakness, brain fog and fatigue although my left knee was also really weak.
A month after I was discharged I started experiencing neuropathic pain in my left extremities which was my affected side, mainly it were my fingers and toes at first. It got worse whenever I did something physical like walking or going to physio.
In March 2019 I was going on green light over an intersection when a car plowed into the side of my car, it went over on a red light. After that crash I started getting real bad and started getting similar neuro pain in my right side, but nothing overly bad and nothing I couldn't manage with my medication.

But now comes the conclusion of this post and the reason for it. On May 6th I went and got vaccinated, I had been waiting for a long time to be called up even though I was on a front-list due to my previous illness. They told me I would be getting AstraZeneca. Lot of people around me asked why I was getting that particular vaccination being 45 years old.
I went and got the shot on May 6th, didn't feel the needle at all. I had read about possible side-effects like getting fever and bone aches and such. But within 2 hour from getting the shot I had my first round of unimaginable pain, in my face. I went home and thought this was just something random. In the night after having felt a little sick as expected, I woke up from most horrible pain ever in my anus, groin, scrotum, balls and breast. It felt as it was on fire along with getting electrocuted at the same time. I did not sleep that night.

The day after was just as horrendous and the night after that.
The following day I decided to go to a public swimming pool with my kids, the weather was nice and I met a friend of mine and we sat in the hot tub for maybe 5 minutes, when I stood up and stepped out of the tub, I immediately fainted and woke up with loads of people hovering over me.
It took me several hours to regain my strength back and I decided to contact the Covid.is, which takes care of all the vaccinations and everything about Covid 19 in Iceland. They told me these were regular side effects that should subside within 2 weeks time. Since then it has been 3 months and I'm still in constant neuropathic pain along with hellish neuropathic itch. I don't sleep much and nobody has answers. My Neurosurgeon says that they've gotten several people with underlying neuropathic symptoms that have come after getting vaccinated, because it seems that the vaccination attacks the nervous system at least she spoke about AstraZeneca in that manner.

@sdf2000- Good morning and welcome to Mayo Clinic Connect. It looks as if you have chosen not to become part of the health system in the US. You said that you have an anti-aging doctor. Can he help with recommendations to specialists for help with your symptoms?

I'm interested to understand why you included fasting in your attempt to lessen your neuropathy. It has always been my understanding that eating lessens pain especially eating foods that help reduce inflammation. Was this your goal?

You are right in connecting chronically high blood sugar levels to neuropathy because it can cause damage to the blood vessels that supply your nerves with nutrients. They can damage your nerve fibers as well. This damage results in nerves that don't function correctly, a condition known as peripheral neuropathy.

Peripheral neuropathy can either be inherited, or develop due to injury or illness. For instance, a disease may cause nerve endings to become sensitized and signal pain without an obvious cause. Or the nerve cell outer sheath, the myelin coating, could degenerate and disrupt the normal transmission of nerve signals. And there are more than 100 types of peripheral neuropathy each with its own symptoms and prognosis. Symptoms vary depending on the type of nerves—motor, sensory, or autonomic—that are damaged.

Your neuropathy sounds very painful. Are you now thinking about getting a PCP and then a specialist?

I had a subarachnoid brain hemorrhage in November 2017 and 2 clots. After a 6 months in a rehab hospital I was discharged and didn't feel much discomfort except for muscle weakness, brain fog and fatigue although my left knee was also really weak.
A month after I was discharged I started experiencing neuropathic pain in my left extremities which was my affected side, mainly it were my fingers and toes at first. It got worse whenever I did something physical like walking or going to physio.
In March 2019 I was going on green light over an intersection when a car plowed into the side of my car, it went over on a red light. After that crash I started getting real bad and started getting similar neuro pain in my right side, but nothing overly bad and nothing I couldn't manage with my medication.

But now comes the conclusion of this post and the reason for it. On May 6th I went and got vaccinated, I had been waiting for a long time to be called up even though I was on a front-list due to my previous illness. They told me I would be getting AstraZeneca. Lot of people around me asked why I was getting that particular vaccination being 45 years old.
I went and got the shot on May 6th, didn't feel the needle at all. I had read about possible side-effects like getting fever and bone aches and such. But within 2 hour from getting the shot I had my first round of unimaginable pain, in my face. I went home and thought this was just something random. In the night after having felt a little sick as expected, I woke up from most horrible pain ever in my anus, groin, scrotum, balls and breast. It felt as it was on fire along with getting electrocuted at the same time. I did not sleep that night.

The day after was just as horrendous and the night after that.
The following day I decided to go to a public swimming pool with my kids, the weather was nice and I met a friend of mine and we sat in the hot tub for maybe 5 minutes, when I stood up and stepped out of the tub, I immediately fainted and woke up with loads of people hovering over me.
It took me several hours to regain my strength back and I decided to contact the Covid.is, which takes care of all the vaccinations and everything about Covid 19 in Iceland. They told me these were regular side effects that should subside within 2 weeks time. Since then it has been 3 months and I'm still in constant neuropathic pain along with hellish neuropathic itch. I don't sleep much and nobody has answers. My Neurosurgeon says that they've gotten several people with underlying neuropathic symptoms that have come after getting vaccinated, because it seems that the vaccination attacks the nervous system at least she spoke about AstraZeneca in that manner.