COVID vaccines and neuropathy

Hi Kathleen, so did you get your 2nd shot and if so, did you have any problems? Warmest hugs, Sunnyflower

Hi I'm new to the group. I found it when trying to find answers to my symptoms.... I was diagnosed with small fiber neuropathy 3years ago, getting worse, mainly in winter. Mainly tingling in my legs, face, chilblains, burning feet, never got any medications or relief. This winter was a bit easier than last. I'm mid 40s, female, generally healthy and fit.

6 weeks ago I got AstraZen vaccine and ever since experiencing severe fatigue, tingling all over my body, muscle and joint pain, feeling down etc.
I went to my family doctor, who said it might be connected to vaccine. Neurologist has several months of waiting list.
Any advice? Any relief? Feeling lost.

Hello @simoneh, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. I've had small fiber peripheral neuropathy for 20+ years. I experienced extreme fatigue the second day after my 2nd Pfizer COVID vaccine. From what I've read fatigue is a common side effect for a lot of people for the COVID vaccines.

-- Oxford-AstraZeneca vaccine: What to know about side effects: https://www.medicalnewstoday.com/articles/oxford-astrazeneca-vaccine-what-to-know-about-side-effects

There are a couple of neuropathy discussions you might find helpful.
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Small Fiber Neuropathy: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/

You mentioned being diagnosed with small fiber neuropathy 3 years ago. Were you diagnosed by a neurologist?

@simoneh- Good morning and I also welcome you to Mayo Clinic Connect. Severe fatigue, muscle, and joint pain feeling blah, and headaches are all expected reactions to the vaccine. The vaccine stimulates your immune system to produce antibodies against COVID-19 and it is your immune system that produces these yucky reactions. I had Moderna and except for tingling, I had the same reactions that you did with a high fever. By a lot of the discussions here it looks like you aren't alone in having neurological reactions especially with people who have a history of PN or another neurological disease.

Are you taking any medications for your small fiber neuropathy? Can your PCP increase or change it to help with your current situation?

Hi and thanks for the warm welcome!
Yes I was diagnosed by a neurologist.
I never was prescribed any medication for my symptoms, nor given any advice how I could support my body.

Most info on all vaccines talk about side effects as short term symptoms for 48 hours or a few days. Since mine was 6 weeks ago, I'm running out of patience, not knowing If it is connected to the vaccine or a new episode of neuropathy or...? And most importantly how long these symptoms might last...
How long did it lasts for you?

Family Doctor also suggested that I might have had Covid and these are long-term Covid symptoms... But I think that is unlikely, but I don't know for sure.
I never had any fever, not even after the Vacc.

Yes, I'm browsing through other feeds, thanks, good to feel less alone! Thanks!

Hello - I had received my second Moderna vaccine on 2/13 and have had issues since then. Neuropathy and Erythromelalgia - informally diagnosed by Dermatologist and waiting Neurologist appt in July - it is the most painful and frustrating experience with apparently no interest of the medical community - at least with my Primary etc

@revisl I understand your frustration unfortunately. I feel like my symptoms have been dismissed so many times since I can still go about my daily life fairly normally.

@simoneh- Have you considered getting tested? There are many people who have had covid-19 with almost no symptoms. It's best to make double sure that you didn't have covid!

@revisl- I had Moderna too. That was one tough second dose! It's not true that scientists aren't interested in the seemingly large number of neurological side effects from vaccines. It might seem that way because much of the research to date has focused on acute infection and saving lives. These strategies have included preventing infection with vaccines, treating COVID-19 symptoms with medicines or antibodies, and reducing complications in infected individuals. Look at this- trials have already begun:

"Some symptoms experienced by some people weeks to months after COVID infection suggest the peripheral nervous system, the vast communication network that sends signals between the central nervous system (the brain and spinal cord) and all other parts of the body, is impaired. Peripheral nerves send many types of sensory information to the central nervous system (CNS), such as a message that the feet are cold. They also carry signals from the CNS to the rest of the body, including those that control voluntary movement. Nerve dysfunction is also a known complication in those with critical care illnesses such as acute respiratory distress syndrome.

Symptoms of peripheral neuropathy vary depending on the type of nerves – motor, sensory, or autonomic – that are damaged.

Motor nerves control the movement of all muscles under conscious control, such as those used for walking, grasping things, or talking. Damage to the motor nerves can cause muscle weakness and cramps.
Sensory nerves carry messages from our senses of touch, sight, hearing, taste, and smell. Sensory nerves transmit information such as the feeling of a light touch, temperature, or pain. The symptoms of sensory nerve damage can include loss of sense of touch, temperature, and pain or a tingling sensation.
Autonomic nerves control organs to regulate activities that people do not control consciously, such as breathing, digestion, and heart and gland functions. Common symptoms include excess or absence of sweating, heat intolerance, and a drop in blood pressure upon standing. Postural orthostatic tachycardia syndrome (also known as POTS) can increase heart rate when standing up and cause such symptoms as lightheadedness (or fainting) or difficulty concentrating."

I had considered a Covid test, even though I literally haven't been anywhere other than the Vacc center. I phoned my family doctor and she said no need to test. She said if I had had Covid at some point in the past they can only detect that a few days after...
Yes, it is so frustrating to be dismissed by professionals, just because I seem ok on the outside, working full time etc. Guess that's what comforts me about this support here, even just being acknowledged, thanks!!!!