I had an appointment with a nephrologist last week to ask about my kidney-area pain. Since the beginning of my illness, this pain has been like a barometer for my overall health. When the kidney pain flares up, a crash is not far behind. The pain always seems to go hand-in-hand with flare ups in other symptoms, like shortness of breath and sore throat, even when those other symptoms effect completely different areas of the body. Somehow, it's all connected, I just can't figure out how.
I had met with a nephrologist once before, about a year ago, and he pronounced my kidneys fine. But he was a very strange doctor with a bizzare personality. I never felt that I could fully trust his diagnosis, and he wasn't able to explain some out-of-range test results.
This time I met with a more down-to-earth nephrologist (Dr. H.) He was able to convince me in very clear terms that the pain I am experiencing is almost certainly not coming from my kidneys [1/7/18 edit: I now think he too was wrong], in spite of what I have believed for two years. He stated that the kidneys have almost no nerve endings, and while it is possible to feel pain in the kidneys, this only happens when people suffer kidney stones or extreme kidney infections. In such cases, however, apparently the pain radiates down to the lower back and groin area. He also said that the kidneys are apparently covered by some sort of "hard shell" that protects them from being bruised or damaged from twisting and turning of the torso. Then we reviewed my recent blood work (and the blood & urine samples from the prior nephrologist) and he agreed that everything looks good.
I appreciated that Dr. H took the time to carefully explain this to me (but not in a pedagogical way), and then to try to help me figure out what else it might be. He was willing to step outside his speciality and discuss my health generally. At this point, I never think that any one doctor will be able to solve my case completely, but sometimes I find one that can put a piece of the puzzle in place.
He says he occasionally sees patients, like me, that have this mysterious flank pain combined with extreme fatigue. He wished he knew what was going on with "us," but he acknowledged that medicine does not always have all the answers yet.
Dr. H said I might think about acupuncture, which he stated has helped others with complaints similar to mine. He also emphasized how important it is for immunocompromised people to keep their hands away from their face...something I really struggle with. Then, after I left the appointment, he actually called my cell phone because he had still been thinking about my issue after I left. How often does that happen? Anyway, he said that based on my chart, he thought testosterone supplementation would help me feel better. That's the third doctor who has told me that.
Sometimes, it seems I'm destined to repeat the same mistakes over and over again for the rest of my life and that's just the way it's going to be. My wife and 21-month-old daughter were headed to an outdoor music festival this weekend and I couldn't decide whether to go or not. I knew I shouldn't because of the way I had been feeling and the fact that I have ME/CFS!
But ultimately, like so many times before, I found a way to rationalize it. My thoughts usually run something like this: I find a way to convince myself that I actually wouldn't expend much more energy, if any, at the festival than if I stayed at home. "I mean, most of the time I'll just be sitting in a lawn chair listening to music," I thought. "How is that different than if I stayed home? So the only difference is the walk to and from the car. How is that different from the walking I do up and down stairs and around the house?" The devil on my shoulder also forgot to mention that I'm still trying to get over a cold.
I have to say, the festival was quite fun. I'm fortunate I didn't miss out on the memories I now have of my daughter dancing, spinning, and often seemingly drawing more attention than the main act. I also had the pleasure of watching her take her first bite of funnel cake, eyes widening and becoming fixated on the rest of the cake in a true eureka moment.
So I would have to say it was worth the crash. The only problem is that I am always thinking "If I can just get past this [fill in name of event or obligation], I'll have a chance to really rest up and get past this push/crash cycle." But there's always something new popping up. Others seem to be much better at drawing lines. It's a serious challenge for me, but one I'm going to work on.