COVID vaccines and neuropathy

Posted by cue @cue, Feb 15, 2021

I am 85 with small fiber neuropathy that is getting worse. My neurologist thought it would be a good idea for me to wait with the covid vaccine and not be first in line to see how it affected other people with neuropathy. Probably because it is a new technology. Has anyone had a problem with neuropathy after receiving the vaccine? If so, which vaccine?

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@revisl

I am now 3 months out from Moderna and the pain is the same. It literally has changed my life completely

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So sorry. I can sadly relate. Everything is different.

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@vbp85

I’m a 36yo male, healthy and physically active w/no prior history of neuropathy.
On 4/21 I received my first dose of the Moderna vaccine in my right arm and within two minutes had a vasovagal reaction—tingling in my underarm, flush feeling face and stiffness and tingling in my upper lips. That mostly subsided within 30 minutes as the dull arm pain set in. Over the next 7 days my arm pain intensified some and moved up my shoulder and down my triceps and into my elbow.
4/28 I awoke with numbness and tingling in my pointer and middle finger of my shot (right) arm in addition to the arm pain and neck and shoulder muscle tightness.
5/8 Arm pain and finger numbness still present, I did some yard work which exacerbated the arm pain, and at this point it was the first day I recognized the pain as a specific intense nerve pain from my shoulder, down my triceps, across my forearm and into my pointer and middle fingers. From this point on the nerve pain and finger numbness/tingling persisted and included intermittent cold forearm/fingers.
5/11 Met with my primary physician who diagnosed me with cervical radiculopathy (C7) as cause for the specific finger numbness without any prior trauma. Prescribed physical therapy, prednisolone and flexeril.
5/12 Had a massage w/aroma therapy, cryotherapy, and cupping. Provided some relaxation, but no change in nerve pain or symptoms.
5/14 First day of PT; neck and arms stretches, neck traction and nerve glides
5/17 Completed Medrol dose pack, steroids seemingly had no effect. Flexeril at night helped relax neck and shoulder muscles a bit.
5/20 (Today) Still have numbness and tingling in my pointer and middle fingers with specific nerve pain down my triceps, elbow, across forearm and into my two fingers that intensifies with activity and at night. Intermittent cold sensation in right hand, underarm inflammation and tenderness, and general weakness of right hand and arm. My 2nd dose is scheduled for tomorrow and given my reaction to the first, I don’t think I’ll be getting it. At this point I’m not concerned with when these symptoms resolve but if they ever resolve.

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Hello @vbp85 and welcome to Mayo Clinic Connect. Thank you for joining the discussion to share your experience and I am certainly sorry to hear how your life has changed this month due to your symptoms.

Did your primary care physician believe there to be a correlation between your post-vaccine symptoms/reaction and your diagnosis of cervical radiculopathy?

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@tcp36c

Hi. I have neuropathy and several other health conditions. I had the Pfizer vaccine in January and I wish that I hadn't as I have worsening peripheral and autonomic neuropathy. The pain and discomfort is truly awful.

I opted not to get the second vaccine because of this. My quality of life now is very poor.

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Hello @tcp36c and welcome to Mayo Clinic Connect. I am sorry to hear that your neuropathy seems to have worsened your neuropathy. How long have you had neuropathy?

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@merpreb

@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:
https://clinicaltrials.gov/ct2/show/NCT04806113
"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."
https://www.ninds.nih.gov/Current-Research/Coronavirus-and-NINDS/nervous-system#complications
https://covid19.nih.gov/

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This could also be a blessing in disguise because further research to eliminate side effects of Covid vaccine may very well lead to a possible cure or an effective treatment for neuropathy

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@amandajro

Hello @tcp36c and welcome to Mayo Clinic Connect. I am sorry to hear that your neuropathy seems to have worsened your neuropathy. How long have you had neuropathy?

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Hello. I've had neuropathy for 14 years.

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@lia

I'm so sorry. I also wish I hadn't gotten the shot and won't be getting the second.

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I'm sorry that you've had problems, too. I knew it was a risk for me to have the vaccine but I decided to go for it as I doubt I would survive Covid. The doctors were also pushing me in that direction.
I'm so poorly now and the autonomic dysfunction so much worse. I am hoping it settles down a bit. I've had to up the doses of nerve pain blockers.
I hope you see some improvement soon.

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I found after the second moderna, a month later, the injection site intermittently flares up with tremendous pain. It is deep and radiates into my shoulder . It hurts terribly. Anyone have this issue?

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@lia

So sorry. I can sadly relate. Everything is different.

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It's not great, is it? I hope it eases for you and settles down.

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Has anyone gotten the second shot while still experiencing increased neuropathy pain from the first shot?Did your pain increase, decrease or stay the same? Since my pain has not subsided I’m extremely hesitant to get the 2nd shot. But with masks coming off making the risk of catching covid even higher not to mention still not being able to get back to a normal life with my family and friends is not a good alternative either. I want to spend time in person and hug my grandchildren again! I feel like I’m in a no win situation! I would love to hear what your outcome was.

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@tcp36c

Hello. I've had neuropathy for 14 years.

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@tcp36c have you considered meeting with your neurologist again to see if there is anything different that you could look into that may provide some added relief? We have members like @sueinmn who has shared that it took her some time for her symptoms to clear. She may be able to share some additional information with you as I know she did take both vaccines.

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