In August of 2012 my husband and I decided to take a little vacation. We could not afford to go far, but we thought a trip to western Wisconsin to tour a few wineries would be a nice way to spend some time together away from the housework, bills, and endless home improvement projects. How was I supposed to know that a couple days of winery tours would lead to two months of some of the worst pain I had ever experienced?
I am an occupational therapist and work in the public school system with children who receive special education. Being that it was August, I was off for the summer and wanted to spend a little quality time with my husband before returning to work later that month. We went on our trip, stayed in two very nice bed and breakfasts, and drove along the Mississippi River, stopping at every winery we encountered along the way. It was a very relaxing, fun trip and we were both glad we went.
About a week after we returned home, I woke up one morning unable to bend my right knee. Old arthritis acting up again, I thought. I have had spondyloarthritis since my mid 20s and pain is no stranger to me, so I didn’t think much of it when my knee became painful. It was unusual that it would not bend, but I just figured that I had overdone something somewhere. The pain and stiffness went away after a couple of days and I was fine. Life went on.
A few days after the episode with my knee, my right shoulder gave out. It hurt. It was stiff. I couldn’t lift it past chest height. A couple of days later my right shoulder stopped hurting and my left shoulder hurt. Same symptoms, different place. Then the pain moved to my wrist, and then my knee again. It seemed like I had a roaming arthritic flare-up happening. I also noticed a strange rash around my head and chest area that would not go away with topical treatments.
This type of pain was not normal for me and I became concerned. I had started receiving Remicade infusions for my arthritis that previous spring and I was beginning to wonder if I was experiencing a reaction to the medication. I could not think of any other reason for this strange pattern to my joint pain and the unusual rash. I called my doctor and made an appointment.
My joint pain became a little bit worse and a little more widespread every day. By the time I saw the doctor a week later, I could not move my right shoulder or my right knee, and pain shot through both wrists and both elbows. I could still walk and move around, but I was starting to need help reaching for items on shelves and getting my clothes on. The doctor was at a loss for a cause to the sudden change in my condition. He did say that I could be having a reaction to my medication, but he wasn’t sure and blood work might reveal the cause. I gave up four vials to the medical technologist and went home.
Life did not get easier. Toward the end of August I hobbled to my class reunion with the help of my husband and hid the fact that I was feeling miserable from old friends that I had not seen in 30 years. The following week I went back to work, struggling with how I was going to provide services to my school aged students when I could barely move. Every joint in my body was affected by this time – even my jaw! I missed the first day of school and used five sick days in the month of September alone. I am not sure how I kept working, but the doctor had released me to work, so I did. I could not keep up with the cleaning and struggled to make dinner, drive the car, and wash my hair. My husband snickered as I shuffled around the house like an old lady from some comedy routine. It took me a half hour just to get dressed in the morning and my husband, who had stopped snickering, helped me get dressed on some of those days. I had reached the point where I went to work, came home, and did little else.
I started to wonder if this condition was going to be permanent. It was so painful, so severe! What if this wasn’t a reaction to medication? What if my arthritis had progressed quickly to the point that I had become disabled? I could not wrap my brain around this thought. I work full time to carry our health insurance. What would happen if I couldn’t work? How could two of us live on disability? I worried a bit, and I prayed a lot, and hoped that the pain would just suddenly go away. It didn’t.
During this entire time I kept calling the doctor’s office, urgently searching for some pain relief. The doctor had prescribed Prednisone and a narcotic pain reliever that didn’t work. Every time I called he changed the pain reliever. None of them worked. He also changed the steroid dose, which gave me some much needed relief for two days, but then all the pain came back. The only way I could relieve this excruciating pain was to take eight ibuprofen all at once. This, of course, caused an entirely different pain in my stomach, so I only did this once. I got through my work days on the Prednisone, four ibuprofen in the morning, and another two in the afternoon. I was grateful for my family, friends, and co-workers who offered up prayers, encouragement, and a few small gifts. My husband, even though he picked on me a bit, was wonderful and I cringed at the thought of the situation I would have been in if he had not been there.
Finally I received a call from the doctor’s office. My test results were back and they showed that I had something called Parvovirus B-19. It is also called Fifth Disease. The doctor said that the virus would last six to eight weeks and there wasn’t much they could do to treat it. He prescribed more Prednisone and Tylenol 3 to help me sleep.
Parvovirus? Wasn’t that something that dogs got? I went straight to the internet and looked up the condition. I found out that Parvovirus B-19 is a virus found mostly in young children. It causes a cold and a lacy looking rash, and most people who catch it don’t even know they have it. Then I saw the section titled Parvovirus in Adults, which stated that in adults with compromised immune systems (like me), this virus could cause joint pain. No kidding! The article said to take ibuprofen for the joint pain. It failed to mention how many bottles of the stuff to take before the virus went away!
I kept taking the medication the doctor had prescribed and it kept not working. I called the doctor’s office again, and again, and yet again. The last time I called I got a tone of voice from the nurse that implied “Quit calling. We don’t know how to help you.” I quit calling. I was having enough trouble and I didn’t need attitude on top of it all. I took the Prednisone and lots of ibuprofen, and waited. I pondered on which pain was worse – this or childbirth. I decided childbirth was worse, but at least I knew that pain would end!
Finally, during the second week of October, my symptoms started to subside. I could move again! I could dress myself again, and I could walk at a normal pace without limping. People stopped staring at me and the “How are you feeling?” comments changed to “Well you are walking better!” What a relief! I would not be permanently disabled. I would not have to live the rest of my life taking piles of pain pills. I would be able to keep my job.
I had a follow up appointment with my doctor that week and we discussed everything that had happened to me. The doctor informed me that only about 5% of children do not catch Parvovirus B-19, so my condition had been rather rare. I was one of the 5%. He was glad he tested for it. He was also glad that he had thought of it, because this virus can cause false positives on blood tests. If he had not tested for the parvovirus, he would have thought that I had lupus, because the virus had caused that false positive on my blood work. My doctor told me that I should not have any long lasting effects from the virus and could resume my Remicade treatments. I had an infusion two days later and felt totally back to normal by the weekend. I have now resumed my normal activities. Sure, I still have some joint pain, but I had that before and I’m used to it. This pain seems minor compared to what that virus caused.
Looking back on this episode, I am extremely grateful to have full function back. I have worked with people with disabling health conditions my entire career and I do know what they go through. I have also had some illnesses that have been bad enough to put me on medical leave, but I have never had one that caused this much pain for so long. I am so happy and grateful to have my health back. I also have a new appreciation for what people with disabilities go through every day and I hope I can continue to help them with a little more empathy than before.
And after reading that article, including the information on how the virus is spread and incubation time, I calculated that I must have caught the virus sometime during the first week of August. That was during our trip! I caught a virus somewhere along the Mississippi River and it created havoc in my body! Who knew that a quest for a little wine would have caused all this trouble? We could have just gone to the grocery store!