COVID vaccines and neuropathy

Thank you for sharing your knowledge and experience. They have been extremely helpful to me as I continued to battle my pain and other symptoms. After the second Pfizer covid vaccine, I too developed a debilitating pain starting two weeks after. The pain began in my feet and over the course of several weeks traveled up to my legs, buttuck and upper body, affecting mainly my muscle and tendon. Thinking that a massage would help, I did foam rolling on my extremity and areas with pain and the next day the pain was so severe causing inability to walk or sit for several days as foot, leg and buttuck pain were unbearable. It's been over two and a half years now and my condition hasn't gone away. I feel more fatique, anxious, and am very sensitive to pain, loud noise, and light. The sore in my feet and hands are now accompanied by tingling and numbness that is worse at night and morning and reduces with movement. My upperback and neck are also in trouble now due to pain. Light exercise and stress have made me feel fatique. I cannot engage in a long conversion because it causes breathlessness and fatique. I also have stomach issue and frequent urination at night and when pain is severe. I've consulted with many specialists in town and done many tests (EMG, rheumatoid factor tests, autoimmune disease tests, various vitamin, metal, infectious diseases, allergy, etc) which did not detect anything abnormal. This condition has drastically changed my life at home and work as I cannot sustain long walk, standing and sitting. I've tried several drugs (GPB, cymbalta, Ibuprofen, tylenol, low dose naltrexone, CBD) and supplements but they seem to cause stomach upset. I've also tried acupuncture several times and it didn't seem to help. I've been managing the pain (poorly) with lidocaine cream, herbal ointment, and warm or cold compress and rest and follow the recommendations of my doctors. My recent visit with a neurologist specializing in peripheral neuropathy revealed that I may have SFN. I was wondering if anyone will be willing to share the experience of skin biopsy in terms of pain and duration of wound healing required for SFN biopsy. Also, is skin biopsy necessary to make this diagnosis? How do one deal with pain on a daily basis at work and daily life as I don't see that this condition will go away anytime soon and I am highly concerns that it will progress to the point of inability to do anything. Thanks so much.

Hello @kle, I would like to add my welcome to Connect along with @hello2 and others. I was diagnosed with idiopathic small fiber peripheral neuropathy without have a skin punch biopsy although it is the gold standard for diagnosing neuropathy. I posted my neuropathy story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

You are not alone in your concerns about the progression of neuropathy and it's good to be searching for answers. Here are some discussions you might want to read to find out what others have shared:
--- Chronic Fatigue Syndrome and Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/chronic-fatigue-syndrome-and-small-fiber-neuropathy/
--- What helps the symptoms of Small Fiber Neuropathy?: https://connect.mayoclinic.org/discussion/tingling-from-small-fiber-neurapathy/
--- Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/.

Did you report your adverse side effects to the Vaccine Adverse Event Reporting System (VAERS)? - https://vaers.hhs.gov/reportevent.html

Dear John, I thank you very much for your warm welcome and for sharing your journey with neuropathy and important resources to help me. I will read and learn from them. I am a little hesitating about skin biopsy because I fear more pain from the wounds and I cannot take many pain medication during healing due to my current stomach issue. Regarding side effects, I did report my symptom to VAERS in 2021. I hope my voice was heard. Thanks again!

Thank you for sharing your knowledge and experience. They have been extremely helpful to me as I continued to battle my pain and other symptoms. After the second Pfizer covid vaccine, I too developed a debilitating pain starting two weeks after. The pain began in my feet and over the course of several weeks traveled up to my legs, buttuck and upper body, affecting mainly my muscle and tendon. Thinking that a massage would help, I did foam rolling on my extremity and areas with pain and the next day the pain was so severe causing inability to walk or sit for several days as foot, leg and buttuck pain were unbearable. It's been over two and a half years now and my condition hasn't gone away. I feel more fatique, anxious, and am very sensitive to pain, loud noise, and light. The sore in my feet and hands are now accompanied by tingling and numbness that is worse at night and morning and reduces with movement. My upperback and neck are also in trouble now due to pain. Light exercise and stress have made me feel fatique. I cannot engage in a long conversion because it causes breathlessness and fatique. I also have stomach issue and frequent urination at night and when pain is severe. I've consulted with many specialists in town and done many tests (EMG, rheumatoid factor tests, autoimmune disease tests, various vitamin, metal, infectious diseases, allergy, etc) which did not detect anything abnormal. This condition has drastically changed my life at home and work as I cannot sustain long walk, standing and sitting. I've tried several drugs (GPB, cymbalta, Ibuprofen, tylenol, low dose naltrexone, CBD) and supplements but they seem to cause stomach upset. I've also tried acupuncture several times and it didn't seem to help. I've been managing the pain (poorly) with lidocaine cream, herbal ointment, and warm or cold compress and rest and follow the recommendations of my doctors. My recent visit with a neurologist specializing in peripheral neuropathy revealed that I may have SFN. I was wondering if anyone will be willing to share the experience of skin biopsy in terms of pain and duration of wound healing required for SFN biopsy. Also, is skin biopsy necessary to make this diagnosis? How do one deal with pain on a daily basis at work and daily life as I don't see that this condition will go away anytime soon and I am highly concerns that it will progress to the point of inability to do anything. Thanks so much.

Thank you for sharing your knowledge and experience. They have been extremely helpful to me as I continued to battle my pain and other symptoms. After the second Pfizer covid vaccine, I too developed a debilitating pain starting two weeks after. The pain began in my feet and over the course of several weeks traveled up to my legs, buttuck and upper body, affecting mainly my muscle and tendon. Thinking that a massage would help, I did foam rolling on my extremity and areas with pain and the next day the pain was so severe causing inability to walk or sit for several days as foot, leg and buttuck pain were unbearable. It's been over two and a half years now and my condition hasn't gone away. I feel more fatique, anxious, and am very sensitive to pain, loud noise, and light. The sore in my feet and hands are now accompanied by tingling and numbness that is worse at night and morning and reduces with movement. My upperback and neck are also in trouble now due to pain. Light exercise and stress have made me feel fatique. I cannot engage in a long conversion because it causes breathlessness and fatique. I also have stomach issue and frequent urination at night and when pain is severe. I've consulted with many specialists in town and done many tests (EMG, rheumatoid factor tests, autoimmune disease tests, various vitamin, metal, infectious diseases, allergy, etc) which did not detect anything abnormal. This condition has drastically changed my life at home and work as I cannot sustain long walk, standing and sitting. I've tried several drugs (GPB, cymbalta, Ibuprofen, tylenol, low dose naltrexone, CBD) and supplements but they seem to cause stomach upset. I've also tried acupuncture several times and it didn't seem to help. I've been managing the pain (poorly) with lidocaine cream, herbal ointment, and warm or cold compress and rest and follow the recommendations of my doctors. My recent visit with a neurologist specializing in peripheral neuropathy revealed that I may have SFN. I was wondering if anyone will be willing to share the experience of skin biopsy in terms of pain and duration of wound healing required for SFN biopsy. Also, is skin biopsy necessary to make this diagnosis? How do one deal with pain on a daily basis at work and daily life as I don't see that this condition will go away anytime soon and I am highly concerns that it will progress to the point of inability to do anything. Thanks so much.

Your symptoms sound very similar to mine and I was pretty devastated last year when this came on. It happened about 2-4 weeks after getting Covid and I had the Pfizer shot twice the January before (2021). Im not sure if related to Covid but timing appears impeccable, started out the sole of my right foot felt as though I walked barefoot on a hot road, burning and when cold(winter time) felt colder than L foot. It was almost ascending in nature going up between my things, not too much on the lower legs. The inner thighs was like a strip from knee to groin and was intensified if sat down. It effected my R buttock and my groin area. I had to avoid laying on my R side for months. It has subsided though but appears permanent. I had a SFN biopsy and it was negative, which they arent 100% accurate either. It says that right on the results. They should stop and give more lidocaine if you feel it too much. Its sounds tough but its tolerable. I am currently being checked for MS but earlier testing reveals that to be negative. Did you get Covid? I hope this helps and know that it may get better.

Good evening @kle and welcome to Connect. Your description of your medical issues is quite extensive. Tonight I would like to respond to your question about the SFN skin biopsy. Once you have the results from this test, you will be able to work with your neuropathy specialist to begin treatment.

The skin biopsy takes about 3 minutes. It is done on an ankle and you can barely feel it. The sample is then sent to a specialty clinic for diagnosis. Mine was sent to Texas. The results were definitive and helped my Neurologist plan my treatment program. Knowledge is always power and you will know where you stand. With the positive results, we were able to zero in on the cause and that is "trauma". Too many accidents....falling off horses and being jumped on from a raft. I was rear-ended several times on the freeway and am paying dearly for the damage that was done. And...too many surgeries. At this point at least 14 orthopedic surgical episodes starting at age 13. I am now 81 and know what it feels like to have developed a long history. No wonder my nerves are insufficient. Remember that nerve regeneration takes a long time.

Good luck to you and don't worry about the test itself. It will be over quickly. As far as healing, I think I wore a band aid for a couple. of days.

May you be safe and protected from inner and outer harm.
Chris

I received the two Covid and two Boosters. I didn’t notice that they made the neuropathy worse, it already had a pretty firm hold. I am doing Sanexas here in Florida. At a chiropractic office. I am actually feeling parts of my legs that I haven’t felt for a long time. About 6-7 treatments so far. Medicare covers 24 treatments. I am excited and hopeful for the rest of my treatments.