Chronic Lyme Disease Summit 2

Sleep deprived?

"I haven't slept in years," I would wear that joke as a badge of honor during the late 1990s and into the new millennium.

 At the time, I was working twelve-hour days, seven days a week, on-call at all times for my employees because our office was open round-the-clock. I always took working vacations, and was also running a household and traveling a lot. I slept pretty much four or five hours a night, and tried desperately to go back to sleep in the early morning hours, usually with little success, on the sofa.

 But I had a lot of energy and always made it through those long work days. I'd stay up until 2:00 a.m. watching "All My Children" as my reward for a long day. I'd generally sleep from 2:00 to 6:00 a.m., and then wake up wide awake. I'd struggle to go back to sleep, because I didn't have to go to work until 11:00 a.m. Usually I'd sleep, on the couch, until about 8:00 and that was it.

 I mentioned this to my first doctor, in 2000, when, as a 40th birthday present to myself, I went for my first physical exam, ever. His response when I said I only sleep four hours? "Why don't you get up and start your day? You'd be more productive." Gee, that's helpful. How 'bout, "I don't have to be at work til 11:00, and I work til 11:00 p.m.! And I think I have a sleep disorder!"

 Little did I know, this was the beginning of my life with fibromyalgia and the frustration of dealing with dismissive doctors.

 I was always in pain. I called the pain at the time "stress neck" since it often flared during deadlines, some of them self-imposed. It was pretty much confined to the right side of my neck, shoulder and all the way down to the middle of my back.

 I also had migraines regularly, and some lower back pain.

 I didn't use the internet much in those days, and had never heard of fibromyalgia. When I would travel, I was the only one in the crowd who wouldn't get jet lag. I'd be up and raring to go with only a few hours sleep, playing tour guide in the various major cities in Europe: London, Paris, Rome, Lisbon. It was a wonderful time in my life. About day two into each trip, I'd always come down with a horrible head cold, which would plague me for the remainder of the trip, and usually would last a couple weeks after I returned home. I never thought much of it at the time, it was another joke, "If you're traveling with me, it's going to rain, and you know I'm gonna get sick."

 One time in London, I developed food poisoning. I had eaten the top three offenders, and in a foreign country: eggs, mushrooms and oysters. I was so violently ill that it was as if someone had slipped me a mickey. I could time the trips to the bathroom: three minutes past the hour, every hour, for about 18 - 20 hours. Did I see a doctor? Of course not! I crawled on my hands and knees, inside that tiny little single room in London, to the bathroom and back to the bed. I will never forget it as long as I live. There is absolutely nothing worse than being sick in a foreign country. I had to fly home the following day, and the flight attendants were trying to get me to eat. Are you kidding? No way!

 At home, our bedroom was a disaster area. Since I worked so many hours every day, I became a lousy housekeeper. Well, ok, I always was a lousy housekeeper! We slept in a wonderful old antique brass bed. It was a double bed, and we always felt like were still on our honeymoon. Since Gil was out of town a lot, I would often sleep alone and became convinced that my disordered sleep was Gil's fault. I blamed him, and was apparently very rude to him yelling at him in my sleep and trying to push him out of the bed. I have no recollection of these events, but he told me about them each morning.

 By this time, I was waking up 15-20 times a night, or more. Unexplained awakenings. The slightest little sound would jolt me wide awake. I became very, very angry. Whenever one of us moved, the bed springs would creak something awful. The bed was so small, there was nowhere to move.

 During these years, we had seven cats, and they would all sleep in the bed with us. I didn't kick them out, just Gil! Most nights, I would retreat to the little loveseat in the living room, and sleep there all crunched up in a little ball with a pet or two on top of me. It was the only way I could sleep. But, because the loveseat is so small (our house is small, we don't have a regular-sized couch) I would wake up in terrible pain from being in bad positions.

 Still, it was an alternate place to sleep. Only problem was, I was using it every night! The bedroom was unpleasant and dirty. It was filled with dust and cat hair. Sometimes a faint cat-urine smell, originating in the basement where their cat boxes were, would emit into the bedroom through the heating ducts. Clothes were piled everywhere, the bureau drawers were overstuffed. Books and magazines covered the two end tables on either side of the bed, and the old trunk at the foot of the bed. The TV was always on. We had placed a big mirror at the foot of the bed. I would later find out that feng shui experts say mirrors near or around the bed are a big no-no. I always hated that mirror. When I finally hired a cleaning lady, she and I moved the mirror out to the hallway. The bed faced the wrong way, with the two little windows in our bedroom directly over our heads.

 When I adopted Hobie the dog, my sleep problems went from bad to worse. He is a very energetic dog, and needed a lot of exercise to burn off that Lab-puppy energy. I was so infatuated by this dog, I let him rule. He'd wake me up at 7:00 and off we'd go on a long walk. Eventually, it became so that I couldn't stay up until 2:00, and I couldn't work til 11:00 because I was just too tired. My priority became Hobie, and it was more important that I be available for him at 7:00 a.m. than it was to be working at the office (and leaving him home alone) until sometimes midnight.

 But then I had a problem. The multiple awakenings continued. I not only blamed Gil, I blamed the cats, Hobie, and even my neighbor who walked his dog past my house at 6:45 a.m. every day, thus awakening Hobie, who would in turn wake me. Despite the fact that I was walking two hours a day, roughly 8 - 10 miles total, I was still not sleeping. I also used a lot of caffeine in those days, which I'm sure didn't help.

 I still didn't know that my disordered sleep was a sign of fibromyalgia. I didn't think it could be something so simple as an illness. I had to blame somebody, and I decided that somebody would be poor Gil, who hadn't done anything wrong! I became so hateful towards him. I couldn't wait until his next trip so I could have the bedroom to myself. But when that did occur, nothing changed. I still woke up what seemed like 100 times a night, and I started waking up in the morning choking with really bad earaches and jaw pain that would last all day, every day.

 I cancelled two trips, to Maine and to Florida, because the ear and jaw pain was so unbearable there was no way I could travel. Did I go to a doctor? No. I started hunting around on the internet, and because I had jaw problems due to that bad car accident I had in the 80s, I just chocked it up to that. I learned that it was a TMJ flare-up, and I learned ways to self-treat: jaw exercises and massage, and putting drops of witch hazel into my ears. It didn't get better, and in fact became much, much worse. I was grinding my teeth in my sleep, and clenching my jaw all day when I was awake. I'd later learn that this is called bruxism. I decided I had to go to a dentist, a TMJ specialist. She fixed me up by fitting me with a custom-made mouth guard that cost me $500 because my insurance doesn't cover TMJ treatment. I wore the mouth guard for a year and a half. It helped me re-train myself to relax my jaw and stop grinding my teeth. I eventually didn't need to use the mouth guard anymore.

 About this same time, I decided the little double bed had to go. I bought a whole brand-new bedroom set. A king-sized bed, two large dressers, mirror, a table and two lamps. It cost me a bundle, but it was the best investment I ever made. Now, when Gil moved around, I no longer felt the movement! It was heaven.

We moved the little antique bed upstairs into the guest room. But still, I continued to wake up seemingly 1,000 times a night. I had convinced myself that I wanted out of the relationship, never thinking for a moment that an invisible illness could be causing my sleep problems. But I hung in there, and eventually I started learning about fibromyalgia. I

t took me several years, but I finally realized that my sweetheart had nothing to do with my sleep problems!

 It would, however, be three years and eight or nine doctors before I was finally diagnosed. Without exception, every doctor I saw said that my disordered sleep was the one and only problem I had, and dismissed my other symptoms. They said if only I would get my sleep in order, I'd see that there was nothing wrong with me. And they all said my insomnia was just part of peri-menopause. My current PCP put me on anti-depressants for pain and sleep. I started sleeping 6 - 6 1/2 hours through the night without waking, for the first time in probably 20+ years. But the four-hour pattern did continue on many nights, and still does sometimes.

 After being on the anti-depressants for about a year, my doctor finally saw me in the midst of a horrible flare. The first words out of her mouth, "Ooh! You're not sleeping!" And I replied, "No. I'm sleeping straight through the night, but I wake up totally exhausted and in excruciating pain every day." And then she started talking about fibromyalgia, and I felt like saying "I told you so," but I didn't, I just sat there and let her do her examination, pressing the tender points, asking me questions and writing notes. Finally someone believed me.

 Don't make the mistakes I did. Make your bedroom a beautiful place to be. Get rid of clutter, watch TV if you want, but be mindful of its negative influence on your atmosphere, keep the room clean, change the sheets regularly.

 If you can afford it, and think you need it, invest in a new bedroom set to include a mattress and frame that doesn't make any noise and through which you can feel very little, if any, movement.

 If finances are such that you can't afford a new bedroom set, then try to modify your current one so it makes as little noise and movement as possible. Prepare an alternative room that you or your partner can go into if you're having a particularly bad night. Communicate with your sleep partner! Tell him (or her) about your disordered sleep. Don't stew in silence like I did. It's probably not that person's fault, after all remember the golden rule: Fibromyalgia Just Is. You didn't cause it, and nobody else did either. It's not anything anyone is doing or not doing. It just simply, is.

 I'm not one to put the pets out of the room. There are rare nights when I will do this, especially if I'm pre-menstrual or under a lot of stress, but I'd say I only do it once or twice a year, if that. I love having my pets around me, it is a comfort. But, if you're not all goo-goo-ga-ga over your pets like I am, then by all means keep them out of the room. You will probably sleep better sans pets.

 I'm also not one to stop drinking coffee. I did cut out diet soda altogether. The stuff is evil. Please do your research on Aspartame (Nutra-Sweet), it is a horrible substance which should be banned from the marketplace as far as I'm concerned. There was a period of time when I was drinking at least two diet Cokes a day, plus coffee all morning. I no longer do that, as I'm sure it was contributing somewhat to my disordered sleep. I don't believe that every fibromyte has to stop using caffeine altogether. You know your body, and you know if caffeine causes bad reactions. For me, it helps with pain, especially migraines, and it gives me just a little boost of energy which I need every day. My doctors have all tried to get me to stop, but I know that caffeine has benefits if used in moderation. I now drink a few cups of coffee a day, and I "nurse" a Dunkin' Donuts iced coffee at work during the three warm seasons. In the winter, I don't drink coffee at work. I don't drink diet Coke or other caffeinated drinks at all anymore, except at an occasional social event (since I don't use alcohol). I try to only drink regular Coke at social events, not diet.

 My beverage of choice is plain water, and I drink a lot of it throughout the day and evening. I keep a bottle of water beside my bed at night because my medication gives me dry mouth and I still wake up coughing and choking sometimes (no sleep apnea, just dry mouth and a little bit of bruxism thrown in for good measure).

 Don't be afraid to take medication. That's what a friend said to me recently, because she knows how drug-sensitive I am, and yes I was totally afraid. I was afraid of the side-effects, and anything mind or mood altering. I tried every over-the-counter sleep med, as well as melatonin. Melatonin gave me nightmares, and things like Tylenol PM put me in such a state that if I had to get up to go to the bathroom in the night, I would nearly injure myself because I was so loopy.

 I believe that different people have different chemical imbalances which cause their disordered sleep, and you have to figure out (with your doctor) the one you're living with.

 My disordered sleep (and the accompanying pain) was caused, I believe, by a norepinephrine imbalance. I am now on two very low-dose anti-depressants for sleep: Trazodone 50 mg and Cymbalta 30 mg taken right before bed. The combination works, and the side-effects are almost gone now, or I've gotten used to them. The mood altering aspect is practically non-existent, except for the wonderful side benefit of less anxiety. I had a horrendous time with anxiety, so it is quite wonderful to feel less anxious. So, don't be afraid to take medication, it does work. (By the way, I wouldn't take meds like Ambien if my life depended on it. I'm sure I'd be one of those people sleep-driving! Have you heard the commercial, and the side-effect list at the end? I think those med commercials should be banned, but that's a whole 'nuther' story.)

 And finally, don't work twelve-hour days! I am fortunate that I work for Gil and can basically make my own schedule. Not everyone is so lucky. A friend recently said to me, because I work 6 - 8 hour days now, "Hey! You're working like a normal person now!" I consider it "part-time" in comparison to what I was doing for so many years, but it is true, I am now working the hours of a normal person. 

My vacations are all still working vacations, but when I'm on vacation I work probably two hours a day. I can access everything I need from anywhere in the world -- ah, technology -- and this makes it easier for me. I work a few hours a day on weekends. But the twelve-hour days are a thing of the past. I physically can't do it anymore, and so I don't.

 With just a little bit of thought and creativity, you can fix your sleep problems and make your bedroom a nice place to be.

 Fibromyalgics should make rehabilitating their disordered sleep your top priority in life above everything else.

 It isn't a badge of honor to go through life sleep deprived, it's just plain stupid.

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