My Personal Quest for Better Sleep
I just finished writing a two-part series of articles on the sleep problems that usually accompany fibromyalgia: The Fibromyalgia Sleep Dilemma - Part I: Identifying the Problem and The Fibromyalgia Sleep Dilemma - Part II: Finding Solutions
I really debated whether I should go on to write this article sharing my own personal quest for a better quality of sleep, which could be considered the third part of the series. Why? Because some of what has worked for me is contradictory to the recommendations of sleep experts and I don’t want to lead anyone down the wrong path. But I’ve always tried to be honest with you and share my own personal experiences whenever possible, so I ultimately decided it was important to continue to do so.
Actually, a better title for this article might be "Do As I Say, Not As I Do." Admittedly, I currently live a rather unusual lifestyle that would not be practical for most people. I’m single and work from home, so I am able to sleep whenever I want and work when I’m at my best - regardless the time of day or night. But that is now. My quest for better sleep began long before I had the luxury of such a flexible lifestyle. It took many twists and turns as I learned by trial and error what worked for me and what didn’t work.
Before a Quest Was Necessary
As a child and young adult, I never seemed to require much sleep. In fact, I found it very difficult to sleep more than about six hours a night. Even as a teenager, when most kids were sleeping late, I was up bright and early. I vividly remember spending the night at my cousin’s house and trying to find ways to occupy myself for several hours in the morning until she woke up.
I had always been both a morning person and a nightowl - a somewhat unusual combination. Not surprisingly, I was also a "Type A" personality with a wide variety of interests and a determination to accomplish as much as I possibly could. At one point I was actually working 60 hours a week, taking two college classes, working with the local theater group and teaching aerobics. I pushed myself, sleeping less and less each night until many nights I would only sleep for two to three hours total.
The Quest Begins
Then at age 40 everything came to a grinding halt when I developed mononucleosis. I’ve often thought that my continuous lack of sleep must have been a big contributing factor to the mono. Although I was sent to bed for six weeks, I never did fully recover from the mono. A few months later, I was diagnosed with chronic fatigue syndrome. I didn’t want to accept that diagnosis and although I had given up all of my other activities except for my job, I continued to push myself to keep up at work.
A couple of years later, I was in a bad car accident. Although the visible woulds from the accident eventually healed, I was left feeling worse than ever. The pain and fatigue were overwhelming. It would be several more years before I was finally given an accurate diagnosis of fibromyalgia.
During those years, I was always tired but could never sleep for more than an hour or two at a time. My pattern became - sleep for an hour to an hour and a half, be awake for two to three hours, then repeat the cycle throughout the night. Because I had never required much sleep, it didn’t seem all that ususual to me. But as my level of fatigue increased, I began to realize that something was seriously wrong.
Once I was finally diagnosed with fibromyalgia, I learned why I was unable to sleep for more than two consecutive hours at a time. It was then that my doctor prescribed Ambien for me. For the first time in years, I was able to sleep for six to eight hours a night without waking up And if I did happen to wake up to go to the bathroom, I was able to go right back to sleep. Amazing!
After taking Ambien for more than a year and routinely getting what should have been adequate hours of sleep, I was still waking up feeling miserable and exhausted. I began to think that even though the medication was allowing me to sleep for much longer periods of time, I still was not getting the deep sleep my body needed.
The Quest Takes a New Turn
At that point, I had begun to see an acupuncturist for my fibromyalgia. I told him I wanted to stop taking the Ambien but I feared returning to my old sleep patterns. In addition to the weekly acupuncture treatments, he recommended that I breathe Valerian essential oil just before going to bed. I did that for a couple of months, which really helped to ease the transition off of Ambien.
For the next few years, with regular acupuncture treatments, I was routinely sleeping for three to four hours, waking for a quick trip to the bathroom, then repeating the process one or two more times through the night. I felt like I was at least getting some deep sleep and it was the most consistent and natural sleep I had gotten in a long time.
Becoming a Sleep Rebel
This is the part I was hesitant about sharing because I break many of the standard rules for good sleep hygiene. But we’ve come this far…
Shortly after beginning the acupuncture treatments, I started working from home and didn’t have to keep a "normal" schedule, so I began experimenting with sleep schedules. I think my biological clock has always been out of sync compared to most other people - a problem that seems to be shared by a number of FM patients. For years I had struggled to maintain what was considered to be a normal pattern of waking and sleeping. Now that I was free to set my own schedule, I decided to try listening to my body.
The schedule my body naturally settled into was that of someone who works the third shift. I tend to do best when I work all night, sleep much of the day, and take care of appointments and errands in the mid-afternoon to early evening hours. As long as I can keep that schedule, I do pretty well. The biggest problem is that my schedule doesn’t jive well with the rest of society. Whenever it is necessary for me to be somewhere in the morning or take a trip and interact with people on a normal schedule, I get very tired and sometimes end up in a flare. But at least now I can function and feel fairly good most of the time. When I was trying to force myself to live a "normal" schedule, I rarely felt good.
Two other sleep-related areas in which I’ve experimented and broken the rules relate to where I sleep and noise/light in the room.
I tried several different types of beds, most of which caused me so much pain that I ended up getting up in the middle of the night and sleeping on the sofa. After awhile, I began to wonder why I was even trying to sleep in a bed. So now my "bed" is actually a sofa. I fold a full-sized featherbed in half and lay it on top of the cushions, then cover them all with very soft, high-thread-count sheets. The back of the sofa provides support for my back and the featherbed reduces pressure-point pain. When I add my down pillow and comforter, I can snuggle in and drift off to sleep.
As for noise and light in the room, I break both rules by turning on the TV. When I’ve tried to sleep with no noise or white noise, I find that my mind still races down any number of thought trails and I end up wide awake. By the same token, if I turn on a TV program that I haven’t seen before, I find myself caught up in the story, staying awake to see what happens. What I’ve found works best for me is to watch reruns of old sitcoms I’ve seen at least a half-dozen times before. It provides just enough of a distraction to keep my mind from racing between thoughts, but since I’ve seen it before, I have no need to stay awake to see how it ends. I usually fall asleep within the first three minutes of the show.
My Final Sleep Discovery
Exactly one year ago, I thought I was at a pretty good place sleep-wise. I was sleeping for three or ocassionally four hours at a time. While I couldn’t say I was awaking refreshed, neither was I waking up in so much pain that I wasn’t sure whether I could even get up. I really figured that was about as good as it would ever get.
Then in early May I came across a new type of women’s sleepwear made from a special fabric which had been infused with negative ions. They were called Goodnighties and were reportedly able to increase melatonin, regulate body temperature, increase the flow of oxygen to the brain, reduce pain and help the wearer reach the REM stage of sleep faster, among other benefits.
I was extremely skeptical but thought that if Goodnighties lived up to even half of their claims, they could be a huge help for FM patients. Much to my surprise, they lived up to and surpassed all of their claims. The first night I wore Goodnighties to bed I slept for six hours straight, got up to make my nightly bathroom trip, then promptly went back to sleep for an additional four hours. Best of all, I awoke the next morning feeling refreshed for the first time in more than 20 years! I’ve been wearing Goodnighties every night for almost a year now and am still consistently getting the same results.
(If you’d like to know more about Goodnighties, read my review: Goodnighties Recovery Sleepwear: A Product Review)
Embarking on Your Own Quest for Better Sleep
The reason I wanted to share my personal sleep quest with you is to encourage you not to give up but continue trying to find ways to improve your quality of sleep. While I would certainly encourage you to try the recommendations of the sleep experts first, don’t be afraid to experiment with your own sleep patterns and routines if the standard rules don’t quite work for you. Of course, when it comes to medications and supplements, always work closely with your doctor and don’t try to make changes on your own.
It’s worth your time, effort and money to do all you can to improve your sleep quality. Getting good restorative sleep may be the single best thing you can do to help improve your other FM symptoms as well.
Karen is the co-founder of the National Fibromyalgia Association. She wrote for HealthCentral as a patient expert for Pain Management.