Healing myself one piece at a time

Last Friday I did a sleep study at a clinic. My doctor ordered the sleep study after I told her about my extreme daytime exhaustion, even after sleeping 8-9 hours at night. And that was with the help of prescription sleeping pills that I got in January when I was feeling so wretched. The pills were an absolute lifesaver because they helped me fall asleep easily, but I was still inexplicably tired the next morning. Also, there was another, much harder to describe symptom that I had to take to three doctors before I felt like I was getting any recognition at all. Basically, for more than two years I’ve been experiencing muscle spasms that start as soon as I get drowsy and cause involuntary movements in my legs. Naturally the periodic twitching and jolting (about every 10 seconds) made getting to sleep nearly impossible, probably prevented me from getting much restful sleep, and made me want to crawl out of my skin. But even after describing this sensation to the best of my ability, all of the doctors I saw seemed to be at a loss. They offered little insight into my symptoms or thoughts regarding a diagnosis or treatment. I was slowly going crazy. One doctor did mention the possibility of Periodic Limb Movement Disorder (PLMD), something in the family Restless Leg Syndrome (RLS), but presenting differently and more severely. Unfortunately after some routine blood work this doctor sent me a letter (yes, a physical letter – not an email or even a phone call in this day and age) to tell me that all of my levels were normal and I should be fine. Thanks for nothing. Fortunately the next doctor I saw referred me to the sleep study clinic (for my exhaustion, not my crazy legs, but I wasn’t going to complain) where I was hopeful that answers might be more forthcoming.

So last Friday, in a very crude hostel-like room, my body was loaded up with sensors and I was told to go to sleep so that the necessary data about my slumber, or lack of it, could be compiled. I don’t think I’ve ever been more uncomfortable than I was lying on my back (not my preferred sleeping position) on the barely adequate mattress in that facility. I had wires coming off my scalp, my face, my chest, and my legs. The woman I spoke with when I made the appointment painted a much rosier picture of the sleep study than what I experienced upon arrival. I wanted to be a good patient, but even taking my usual Ambien wasn’t enough to overcome the anxiety of being in a strange place and needing to sleep on command for the purpose of science. The insomnia was strong that night. But for better or for worse, staying awake longer than usual gave my legs an opportunity to perform their little dance and provide proof to my doctor that some part of my body isn’t functioning as it should. At first I was nervous that my symptoms wouldn’t present themselves while I was at the clinic, but that fear turned out to be unfounded. That was the only bright spot of the night. I was miserable for more than an hour after lights out due to the leg spasms and even the sleep technician came in to check on me because I was moving around so much – and not all of those movements were intentional. I finally did fall asleep after much tossing and turning, but it was only for a few hours before the technician was knocking on my door at 5:45 AM to get me ready to leave. Hopefully that short amount of sleep was enough to help my doctor draw some conclusions regarding a plan of action. Heck, even the technician told me that he observed that I have a pretty serious case of PLMD. Not sure if that’s a good thing or a bad thing, but at least I’m going back to my doctor with some new information. I have an appointment to see her early next month to review the sleep study results, but I am almost certain that my next stop will be a neurologist’s office. In fact I’m so certain that I might try to make an appointment even before going back to my GP. Here’s hoping that it won’t be too much longer before I find a solution!

P.S. I did a quick search of my webpage to see if I’ve written about this topic before, but it seems that I haven’t. I find that hard to believe since I’ve been suffering with this medical condition for over two years now. We all have our inward and outward struggles, but we don’t always share them with the world. I’m going to try and be more transparent with from now on.