The Solution to the Skin Pain!

I called my new doctor, Dr. Reifsnyder, after nearly 2 weeks had gone by and skin pain hadn't improved. He recommended I stop my antibiotic, Cedax, for 3 days and see if that helps. If it doesn't, I would have to go in for an office visit. After 3 days off Cedax, the pain had not improved at all. So, I had to go to Lakeland for a visit one week before my scheduled follow-up appointment. I was just hoping that this visit would replace the scheduled follow-up and I would not find myself driving out to Lakeland twice. Luckily, my sister had her initial visit with him that week so I caught a ride with her on day 5 off of Cedax.

When I told the doctor about the pain and inflammation, he said he had seen this exact thing many times before. In his opinion, when the Cedax suppressed the bacterial Lyme infection, it gave the viral Epstein-Barr infection an opportunity to take over. He said the skin pain was a clear result of my immune system trying to fight  viral infection. This answer is in keeping with the answer I got long ago about my joint pain. I was told that it was a result of immune complexes settling in my joints as my immune system fought the bacterial Lyme infection. 

We didn't talk much about the fluid retention but I think I understand that better now too. If you think about how inflammation causes swelling in tissue you realize that it takes fluid in order for the tissue to swell in the first place. I had inflammation and swelling everywhere, especially in my abdomen and legs. My legs and ankles were so swollen that there was a little roll around each ankle. It looked ridiculous! I was so swollen and puffed up that none of my clothes fit. I didn't realize that at first because I had to wear dresses for the pain anyway. It wasn't until I tried on every single pair of jeans I owned, even the ones that were a size bigger, that I found out that none of them buttoned. It was so frustrating. I only had 2 dresses I could wear and then I was out of clothing options. But I didn't go out much while this was going on anyway.

Back to the appointment. Dr. Reifsnyder prescribed a Medrol dose pack, a powerful and short course of steroids, to knock out the inflammation. The idea was that the steroids would take care of the inflammation and swelling while my body adjusted to fighting the viral infection. It was not a solution to the problem. It was only meant to help me deal with those symptoms until the infection was under control, much like cold medicine when you have a cold. He also said to stop the Cedax and continue the anti viral medication, Acyclovir. He said to call his office in 10 days and let them know how I'm doing. Other than that, he just wanted to see me back in 3 weeks.

When we got back to Orlando, I was very tired and frustrated. I had been sitting in the car for 3 hours and in the waiting room for over 2 while my sister had her appointment and I was in so much pain. Plus, we took my mother's car and her suspension is such that I could feel every single bump and pothole on the road. That meant that every few minutes I was jostled around unless I held on tight to the handle above the door. The problem with that is that after a few minutes, I felt too weak and tired to hold onto that handle. So I was at the mercy of my mother's frantic driving and every bump in the road. The pain of sitting in a seat at all, the pain of my skin and muscles pressing into it, was bad enough without being jostled around. It was such a long day that I was very, very over it by the time we got in the car to go home. By the time we got home, I wasn't just exhausted and in pain, I was mad. I was very unpleasant to be around, I'm sure.

The next day I started the steroids. You have to start them in the morning so I had to wait until the next day. I was warned that they might make me feel wired and could make it hard to sleep. After the first 2 or 3 pills, I could already feel a difference. The inflammation and swelling was already going down. The pain began to improve. By the 2nd day, the pain was almost completely gone and I could see my ankles again! It was amazing. They really worked so well and so fast. I was so relieved to be able to get in bed or take a shower or wear a tank top without pain. The inflammation and swelling continued to get better and better over the next few days. That was, until the last day...

Ok, wait, before I get into that, I should say something about feeling wired. I didn't. Far, Far from it. For the first 3 days, I did nothing but sleep all day. Exhaustion wasn't the word for it, I was too wiped out to move. When I wasn't sleeping, I was just lying there with my eyes closed. I thought about how sad it is that that was me on steroids. What the hell would it have been like without them? Would I have slept for 24 hours again like that day months and months ago? I reasoned that it was probably an Epstein-Barr flare because steroids suppress your immune system and probably made it possible for the mono to flourish at first. It did, in fact, feel like when I had mono. I was just too tired to move or eat or anything. But then, all of the sudden, day 4 came and I was wired. I went on a cleaning frenzy. I did laundry and cleaned my bathroom and sorted through clutter that had been in my room for months. I even cleaned my car which I never do because it's really hard for me. I finally felt more like a person on steroids. Even still, I probably only ended up being capable of about a quarter of what normal can do. 

On the last day, the skin pain returned. It came on slowly and subtly. It wasn't as severe or expansive as it was before the steroids, but it was definitely there. It affected my neck and back and shoulders first then spread to my abdomen. Again, it wasn't as bad but it was troublesome. I took my final dose last night and went to sleep in a whole lot of pain. By last night, the pain was pretty bad and I went to sleep so worried that it would all come back when I stopped the steroids. When I woke up this morning, the pain was almost gone. I pressed all the spots that hurt before bed and it took a whole lot more pressure to cause pain. It doesn't hurt to lie in bed and my clothes aren't bothering me. So, ok, it looks like things are ok for now. I will just watch it and see what happens. Maybe there will be an adjustment period after I stop the steroids as my body gets used to being without them. I will try not to panic about the pain until the full 10 days have passed and I call Dr. Reifsnyder. The course of steroids lasted only 1 week and he told me to call after 10 days. There's probably some reason he picked 10 days so I will wait until then to draw any conclusions. But for now, things are ok and the steroids worked really well. Thank god.