First Dose of Moderna on 12/2020
Second Dose of Moderna on 01/2021
52 yrs old
Last month, I had first appointment with a neuromuscular specialist from Stanford University in Palo Alto. He confirmed Small fiber neuropathy (SFN) diagnosis caused by vaccine. He also agreed that the joint pain is not a symptom of SFN. I completed a week worth of steroids. It did alleviate some of the joint pain. I also had a follow up with pain specialist and we discussed Ketamine infusions as an option. The Neuromuscular specialist said that he is treating others with similar vaccine injuries. For the first time, I was not gas lighted or made to feel "crazy".
Original Interview submitted on 06/07/22:
Q: What was your life like before you got the vaccine?
Worked full time as a registered nurse in a large pediatric hospital for 21 years. Raising two children, working regularly, active family and social life. Gardened every opportunity I got. I exercised 4 times per week. I enjoyed hiking with my family.
I had a history of neuralgia secondary to a surgery that I had in 2011 to remove a fibroid. I was on 75mg of Lyrica at the time of the vaccine.
Q: Would you like to share your reasons for getting vaccinated?
I believed it was the right thing to do, and I worked in healthcare.
Q: What was your reaction, symptoms, & timeline?
After second dose, I felt prickly and itchy ALL over. The itching was keeping me up at night. I was taking double dose of Benadryl. I reported to my PMD. She ran labs and said everything was normal. The all over itching was affecting my sleep. I was lathering myself with coconut oil and Vitamin E with little relief. I also started to feel burning and itching in my vulva. I went to see Gynecologist who said physical exam was normal. I was prescribed low dose progesterone. The burning and itching progressed: it felt like I had a porcupine sitting on my lap. I got a nerve block that helped some, but by late March, I had pain at the old incision site and down my right thigh. In Mid April, I had an epidural which did alleviate the leg pain. Day or two after epidural, I started to have very sharp pain in my right thoracic area. It felt like it originated in my spine. The pain was an 8 of 10. I could not use my right arm/hand, because any movement made the pain worse. Lyrica was gradually increased to 600mg. I could not sit back in a chair or lay on my back. I was using Lidocaine patches on my back and abdomen. I was having appointments with primary care doctors at Kaiser, but they did not understand what was happening to me, even though I kept reporting that what I was feeling was different than what I had dealt with before. I changed primary care doctors 3 times. They sent me to PT. PT made it worse. After 4th ER visit, I was finally referred to a Neurologist. By this time, I have been dealing with depression, anxiety and panic disorder, in addition to chronic pain syndrome. The pain doctor offered to give me Lidocaine infusion. Did that twice with NO relief. The pain moved to the left thoracic area, and my armpits were also burning. I was treated for shingles even though I had no rash, just in case. The neurologist I saw early June said he didn't know what was wrong with me. He added Gabapentin and refused to order MRIs. I went outside of Kaiser and got MRI of spine and brain with contrast. All came back normal. The pain progressed down both armpit, hands, back, hips, knees, ankles and feet. I pushed for another opinion, and in early August, I saw another neurologist. By this time, I could not walk well. The pain in my feet was so bad that wearing shoes had become very, very, difficult. I could no longer do what I use to do. My last day of work was April 17. The new neurologist diagnosed me with disseminated small fiber neuropathy and prescribed Cymbalta and Methadone, in addition to the Lyrica I was already taking. In addition to the all over muscle and joint pain, I have days where I feel as if my body weight is too much for me. I'm only 130 lbs. In March this year, I weaned off Methadone and added low dose Naltrexone.
Q: What is your life like now, after getting the vaccine?
Everything has changed. At times I feel like a ghost in my own life. I have had to learn to adapt to my new way of being. I have to pace myself. As the day does on, the pain goes up. By midday, my feet hurt so bad that I have to sit or lay down. I can't walk more than a few blocks at one time. Grocery shopping is difficult. Every task from folding laundry to cooking is painful. Whenever I try stretching, or any form exercise, I have a lot more pain.
Q: Share your experience with any medical care and any diagnoses you have received:
Acupuncture made the pain worse. I can now feel every needle as it is inserted. I have also seen a Naturopath who was very understanding and agreed that it is a vaccine injury. The primary care doctors were very, very, very dismissive of my symptoms. The ER doctors thought I was drug seeking and/or having pain attacks. Getting work notes was a nightmare. If it were not for my mental health providers (outside of Kaiser), I wouldn't have a job to go back to or means to cover my bills. Getting the care I need has been a nightmare! The neurologist I saw in August did tell me that he has seen this type of neuropathy in patients who have had Covid and in patients who had a Covid vaccine. This doctor ran every lab that he could think of, and every lab came back normal with exception of low iron levels and gestational diabetes. I take supplements like Alpha Lipoic Acid, Omega and other natural supplements.
Q: Was your reaction reported, and what was the response?
I haven't bothered, and my doctors didn't do it either.
I saw Kaiser doctors last year. They were very dismissive. Navigating the medical system and accessing care has been extremely difficult.
I recently saw pain doctor at Stanford. She was a lot more receptive. I am waiting to see a neurologist at the end of May. My new primary care physician, outside of KAISER, has been very kind and helpful.
I have also visited a homeopathic doctor and have done an herbal cleanse while eating a raw vegan diet. I tried acupuncture. It did not help.
Q: Is there anything that has helped, and have your symptoms improved?
Cymbalta and Lyrica help. Methadone helped with pain, but side effects made it hard to use. Also don't want to be on opioids longer than need be.
I recently went vegan and the inflammation and pain in my hands improved.
Q: Have you had Covid before?
I have not had Covid that I know of.
Q: What do you wish others knew?
I wish those of us that are suffering could be heard and helped.
If it were not for friends and family who have been by my side, I don't know where I would be today.
You are not alone. Keep looking for providers who listen and want to help. Be patient with your self. Try alternative medicine.
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Related Scientific Publications/Case Reports:
Spectrum of neurological complications following COVID-19 vaccination: https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC8557950/
Small fiber neuropathy:
Small fiber neuropathy and POTS following Moderna and Pfizer vaccination (NIH publication): https://www.medrxiv.org/content/10.1101/2022.05.16.22274439v1?fbclid=IwAR3bhFglz5CRfS4zFd1QAP0bvIuk7XDXq 7fDQxZwTYj0IzPE9C32lXDGqd4
Find more research and articles at https://react19.org/1250-covid-vaccine-reports/
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