COVID vaccines and neuropathy

Unfortunately I don’t ever expect to feel well again, but I do think that diet, walking, supplements is certainly helping. The pain is usually tolerable with a low dose of Gabapentin, as long as I can sleep it’s manageable. I’m seeing a neuromuscular MD next month, so I’m hoping she may offer some insights.

Hopefully your neuropathy will improve. Stay strong, eating well, and walking!

Thank you for your encouragement! Back at ya! I hope all goes well with your visit to a neuromuscular doctor next month and they have some helpful information and treatment suggestions!

I understand your feeling! I was struggling with unmanaged pain for years, until my primary sent me off to a pain management doc, who in turn sent me to a specialized PT. Long story short, after months of MFR, stretches and movement therapy, I came out the other side...not without pain, but manageable. In addition I gained a lot more self-awareness of my power over my body. Last week saw some days of unavoidable inactivity and long hours in the car, and the pain and spasms came roaring back. I have now spent 5 days getting things calmed down, this is the first day I am ready to walk and run errands.

So I have learned that exercise, therapy, and changes must become a way of life. There is no cure, only management. But it is totally worth it to have decent quality of life.

Good luck with your consult.
Sue

Hello @hlaura20 and welcome to Mayo Clinic Connect. Reactions of all kinds have been reported by members on Connect. Some of which last just a short period of time, while others have shared them lasting longer, so you are fortunate that yours dissipated after about 24 hours.

Were your family members all diagnosed with peripheral neuropathy prior to their first Pfizer vaccine?

Thought I’d share this quote from an article in Medpage Today, “Vaccine Effect or Functional Neurological Disorder? — COVID vaccination may trigger FND, much like other stressors.”

"Correlation does not imply causation," Espay told MedPage Today. "If neurological symptoms following vaccination are determined to be functional during a neurological exam, then the vaccination can only be considered a stressor or precipitant, much like any other stressor might, such as a motor vehicle accident or sleep deprivation."

I suppose that falling on the street and experiencing neuropathy closely thereafter could be called a stressor too. But accidents can’t always be avoided, whereas, vaccinations can, and certainly should be, for a medical reason. And, obviously physicians are not aware of the neurological disorders that may be due to the “stresses” the Covid vaccine have on some people. So, at least if the potential vaccine stressor was better acknowledged, maybe physicians and researchers could provide those of us impacted with guidance on diagnosis and treatment.

Here’s the link to the article: https://www.medpagetoday.com/neurology/generalneurology/94151

Thanks Sue. I credit walking, good diet, and supplements to be helping with at least some of the neuropathy pain. I’d like to try MFR, so I am going to ask the neuromuscular MD about it. I’m glad it has helped you.

Unfortunately I’ve gotten no where with the rheumatology department, which I think I need as well. So, that’s on hold.

I’ve been contemplating the Spoon Analogy today. It is helpful for realizing all the things that impact my mind and body and maybe how to organize them better. Something that, as you say, would help me be a better manager of my body. Fortunately, my neighbors and I get out walking regularly before 7 am, so this helps me commit, and get it done before work and most appointments.

Athenalee, your mention of the Spoon Theory reminded me of another discussion. I bet you would have something to add to the discussion.
- How do you plan your day and conserve energy? Are you a Spoonie? https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/

Thank you Colleen. Actually, @becsbuddy turned me onto the post yesterday and I went to the website and read the Spoon Theory story. I found it very relatable and insightful.

NEUROPATHY PAIN GONE AFTER AN INITIAL EXACERBATION!
My husband has had severe peripheral neuropathy pain in both feet for more than fifteen years with little to no relief from any medication ... In fact week prior to getting the last vaccine he consented to considering medical marijuana tincture ...10 days ago he received the third shot of Pfizer vaccine - as with first 2 vaccinations he had no side effects ...however a few hours later he began to have intense neuropathy pain - at a level greatly higher than his normal pain intensity. HOWEVER after approximately 36 hours the pain was gone and most interestingly and significantly his NEUROPATHY PAIN HAS NOT RETURNED AT ALL. It has now been almost two weeks pain free, Any insights?

Hello @drp985 and welcome to Mayo Clinic Connect. What you've shared is fascinating and quite miraculous. To date, I haven't read of this from any other member so your husband is the first! Since we are just days into the third vaccine delivery, I wonder if we may see others reporting and sharing similar experiences?