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 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.
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 Vit 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 feetwas 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 130lbs. In March this year, I weaned off Methadone and added low dose Naltraxone.
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.