After about 4 or 5 days of that, the pain spread and became less intense. It spread to the muscles and soft tissue around my lower back, hips, and thighs. The muscles were sore to the touch, as if I had done an intense work out. I couldn't cross my legs or bend down to pick things up. By the end of a week, even the skin over my joints hurt to touch. Even using a washcloth in the shower hurt. The whole episode lasted about a week. Somewhere in that week, my primary care physician, Dr. K, gave me pain pills and put me on an anti-inflammatory diet.
Identifying this experience as an episode was not possible at first. When it began, I had no way of knowing when or if it would stop. It would be months before I got the Lyme diagnosis and learned about the 4 week cycle of symptom flares. I quickly learned that the pain did not go away when the episode was over, it was only reduced. After that first episode, every 4 weeks or so, I would have another. None of the episodes were as intense as the first, but they all followed the exact same pattern. By this time, ice packs, Biofreeze, pain pills, and disabled parking had become a way of life. I found that I could manage the pain between episodes with these coping mechanisms. During an episode, however, there was little I could do to get relief. Each episode that Fall was more depressing than the last as I began to realize that they weren't going to stop. For the first time in my life, I had thoughts of suicide that mirrored the intensity of the pain. By the end of Fall, I was on stronger pain pills and was more frustrated and than ever.
About a week before Christmas, I went to see my other primary care physician, Dr. B. She is an internist and shares a practice with her husband, who is a rheumatologist. I had been to see the rheumatologist that summer, before the episodes began. My lab work and exam showed no evidence of arthritis. Of course, joint pain was only one of many symptoms I was experiencing and the Lyme diagnosis was still more than 6 months away. So, I was on the specialist circuit looking for answers. The rheumatologist told me that there were too many directions to go in and that we would have to wait for me to get worse in order to get more clues. He told me to meditate and then sent me on my way. When I saw Dr. B, she told me a version of the same thing. She half-heartedly diagnosed me with Fibromyalgia and offered to give me cortisone injections for the pain. It turns out that I had correctly identified the location of the joint pain. It was in my sacroiliac joints which are the lowest joints in the lower back. She told me that the injections wouldn't be very painful and should provide almost instant relief. Unfortunately, that was not the case.
The first injection was so intensely painful that I started sobbing immediately and a nurse had to catch me and hold me up. I don't know why I agreed to the second one. Not only did they not provide instant relief, they caused a solid week of the worst pain I've ever experienced. Within an hour, all of the muscles in my back had seized up. My sacroiliac joints were swollen, aching, and throbbing. By that evening, the pain had taken over my entire midsection and I couldn't move. I called Dr. B's office the next morning to ask if this was normal. They were very surprised to hear that I wasn't feeling better and shocked to hear that I felt worse. They told me to use ice packs and call back in 2 days if the pain didn't improve. Nothing helped the pain. No amount of pain pills, ice packs, or biofreeze helped. It felt like my joints were full of shards of glass. Sitting was impossible and laying down was worse. Because these joints are so central, you simply cannot move without using, or agitating, them. The only way I could get even the slightest bit of relief was to stand up or pace around. Of course, I could only do this for a few minutes at a time because I was so fatigued and because it aggravated my other joints. Even when I tried not to move at all, there was still a sensation of burning and stinging. I can't describe the devastation. To say I was suicidal is an incredible understatement. I was certain I was going to have to kill myself. It was not worth living like that and I was starting to make plans. It was the worst thing that had ever happened to me.
After a week of that, I somehow managed to drive myself down to Dr. B's office and beg for help. I could barely move and driving caused excruciating pain. I needed immediate relief and I decided I wouldn't leave until I got it. I expected to leave the office with even stronger pain pills but instead was given a sample of Lyrica. I was furious because the bottle said it could take up to a week to work. I did not have a week. I took the first dose as soon as I got home. Except for making me feel drowsy, it didn't do anything. So, I went about my day pacing and crying. As I said before, sitting was nearly impossible. I couldn't stand the pain of settling all the way into the chair, so I had to hold myself up with my arms. After a few minutes, however, my arms were weak and shaking and I'd have to change positions. Later that night, I took the second dose of Lyrica. About a half an hour later, I felt this bizarre sensation in my joints. It felt like tingling, the way hydrogen peroxide feels on a new cut. Then, suddenly, the pain stopped. Just like that. Like magic. One minute I was shaking and crying and struggling to hold myself up and the next it was over. I sank into a chair for the first time in a week. I stood up and walked around. It didn't seem real. I tried lying down. I could do anything. I was in disbelief. I was so overwhelmed and relieved that I started crying. It was finally over.
I later learned that Lyrica is the only medication that is FDA approved to treat Fibromyalgia. It's also used to help relieve nerve pain, especially in diabetics. I'm not sure exactly how or why it worked. The injections definitely irritated nerves in my SI joints as well as the nerves that run down the back of my thighs. So, that part makes sense. But, how it helped the rest of pain, I just don't know. But, I really don't care. All I know is it worked. I continued taking it for the next few weeks and finished the sample bottle. After that, I didn't need it anymore. Things went back to normal. The only permanent damage seemed to be nerve related.
The following week, Dr. B ordered x rays of my back. The x rays showed muscle spasms but nothing that indicated that an MRI would be necessary. Again, this was all before the Lyme diagnosis and definitely before the pain moved to my hips and became completely debilitating. If I knew then what I know now, I would have insisted on an MRI. I would have demanded that someone look at the problem instead of sitting back and watching it get worse.
No one really seems to know why I had such a bad reaction to the cortisone injections. I did some research and found information on how cortisone can crystalize in the joints of Lyme patients. This seems consistent with my description of feeling like there was glass in my joints. Whatever caused it, it was enough to finally convince me to pay the $400 out of pocket to get the Lyme test through Igenex. Dr. B agreed that this was a good idea. She told me she was out of ideas and that I should pursue Lyme with Dr. K. And that's what I did.
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