My name is Dominie Soo Bush. I live in Green Cove Springs, Florida where I am a piano teacher and church musician. I began having trouble sleeping when I was a 16-year-old college student. Then at age 30, I developed fibromyalgia and severe insomnia when working as a legal secretary with extreme pressure and deadlines for a busy law firm. I averaged 2-3 hours of sleep a night due to job stress. I had also been under a great deal of personal stress at home for many years.
On weekends, I would try to catch up my rest by sleeping 7-8 hours a night. After a year of this, I suddenly developed a pain in the base of my neck and shooting pains in my arms, hands and fingers. My muscles felt tight and inflamed, and I was physically exhausted. I wanted to quit my job, but I had to keep on working to pay bills. It was torture to work a stressful, full-time job with little or no sleep each night!
I had no idea what was wrong with me. I consulted many doctors--neurologists, orthopedic surgeons, chiropractors, rheumatologists, doctors of internal medicine, etc. Each one had a different theory: R.S.I. (repetitive stress injury from overuse), fibrositis, multiple sclerosis, thoracic outlet syndrome, pinched nerves, tendinitis, carpal tunnel syndrome, and even a hypothyroid condition. The final diagnosis was R.S.I. (repetitive stress injury from typing) and fibromyalgia (fibrositis). At times I also had muscle tremors and slurred speech. I felt totally burned out. The doctors prescribed drugs--anti-depressants, anti-inflammatories, muscle relaxants, sleeping pills and others--but nothing really helped. It was very frustrating! The sleep disorder and resulting body pain caused me intense suffering. I walked around like a zombie most days from the sleep deprivation, yet I had to function and pushed myself very hard just to take care of daily responsibilities.
I tried taking vitamins and exercising. The vitamins helped me feel stronger, but the debilitating pain, insomnia and muscle stiffness persisted. Exercise actually made the condition worse. It didn't help me sleep at night and exercise also made my muscles feel like they were tearing. Even mild stretching, such as reaching too far into a cupboard, would cause pain that lasted for weeks. Playing the piano, because of the repetitive use of the muscles of my fingers and hands, would cause me days of misery. I was puzzled that I even had pain when my body was completely at rest! Sometimes it was a sharp jabbing sensation, at other times a dull, miserable ache that wore me down. It felt like the nerves and muscles were irritated and inflamed.
Because I looked healthy and kept up with my responsibilities, a lot of people didn't believe that I was suffering like I was. Some even said it was "all in my head" or that I was lazy and trying to avoid work! There were days when I had to call in sick from lack of sleep. Needless to say, this didn't go over well with my employers, and this situation increased my stress levels as I worried about keeping my job.
I started losing the feeling of "connection" between my brain and my hands. I would think I was going to drop something, when actually I would be gripping it very tightly. Also, if any weight was put on my arms, such as carrying grocery bags, lifting a heavy pot from the stove, holding a baby, having a child pull on my arm, etc., I would get terrible pains in my arms that would last for days. I felt practically disabled! So many activities I never gave a second thought to now became obstacles throughout the day!
Eventually two fingers on each hand curled over. I could straighten them out using the other hand, but it was as though tight rubber bands were pulling them down. One doctor called this condition "claw-hand deformity." I finally had to quit my job, as I could no longer write or type. Suddenly without my job and the identity it had created for me, I felt lost, unproductive and depressed. I could barely keep up with everyday tasks. As a "Type-A, take-charge, high-achieving" kind of person, these drastic changes in my life were hard to accept. It was a nightmarish time financially as well.
I could not understand how my ability to sleep had disappeared! Sleep was supposed to be a natural thing--even babies can do it! But somehow my sleep clock was broken. I tried many sleep meds, physical therapy, cortisone shots, massage therapy and chiropractic to relieve my various symptoms. My whole body was painful and stiff. If I sat for more than 10 or 15 minutes, I could barely get up again because of the pain and stiffness in my knees and legs. I felt like a very old person. I tried to sleep on my back because of chronic pain in both shoulders.
After a couple of years, I went back to work part-time. But even that was too much. The fibromyalgia would flare up or ease off depending on how much sleep I was getting or how much stress I was under. I felt depressed and fatigued much of the time and also suffered from allergies, tinnitus, TMJ, heart palpitations and painful endometriosis. With my insomnia problem, usually one night of poor sleep led (surprisingly) to 4 or 5 more nights of even worse sleep! I tried a lot of remedies, but they all left me feeling drugged and hung over the next day. Believing it was better to laugh than to cry about my situation, I would make jokes about having something called "Reverse Rip Van Winkle Syndrome"....he slept for 20 years and I've been awake for 20 years!!!
Doctors prescribed many drugs for my pain, sleep problems and depression. Some that I recall were Elavil (Amitriptyline), Flexeril, Pamelor, Klonopin, Prozac, Halcion, Ativan, Valium, Lithium, Inderal, Ansaid, Hydroxizine, Motrin, Feldene and Naproxen. I also took Premarin for endometriosis, and antihistamines, decongestants and shots for my allergies, and I needed frequent antibiotics. My immune system did not seem to function well, and I was very susceptible to catching viruses. Lack of sleep causes the immune system to malfunction and without restorative sleep, your body can't heal itself.
The pain, fatigue, sleep deprivation and biochemical depression wore me down mentally as well as physically. For years I was so weak that even a 45-minute car trip would completely exhaust me! Also, the depression at times was very severe, as my serotonin levels were depleted from years of lack of sleep. In order to cope, I learned to reduce all forms of stress in my life and to curtail any unnecessary activities. I came to accept the fact that I could no longer participate in many things I had previously enjoyed, and I eventually adapted to a limited lifestyle. The carefree days of good health seemed over for good, and I had given up any hope of a "cure." I learned to live with misery every day.
At times the fatigue was so incapacitating that I would have to go to bed. I would literally be too tired to hold my head up. My head felt extremely heavy, like a bowling ball being balanced on a pencil. However, since I couldn't sleep, I would just lie there feeling depressed, thinking of all the work that needed to be done. Typically I would only have energy until about 10 a.m.--then I could barely function. Even the process of eating--chewing, swallowing, digesting--was exhausting at times! Forcing myself to do physical exercise just made things worse. On days requiring a massive (for me) amount of energy, such as driving 4 hours to visit my parents on the other side of the state, I would be in an agony of exhaustion! This lifestyle was very frustrating for a "Type-A, high-achieving" person such as myself!
There were days when I could barely put one foot in front of the other. I felt like a fish trying to swim upstream. What was easy for other people was a Herculean feat for me. After quitting yet another job because of fatigue, I later found out what had been making my condition even worse--a mold-filled air conditioning return duct right beside my desk! The woman who replaced me also had allergies and she soon developed chronic bronchitis and had to quit also. Her husband came to the office and discovered huge globs of moldy dust in the duct! The building was 60 years old and had been renovated into an office. Since we were the only ones who were adversely affected, our complaints were not taken seriously.
Certain people in my life began to insinuate that the pain and fatigue were all in my head--that I was a hypochondriac or neurotic--and if only I would try harder, I could overcome my poor health. I would work myself up into a state of nervous energy (for lack of a better description) in order to seem bright and efficient at my job, but then collapse in total exhaustion at home! One day my boss called me "lazy!" This really hurt, since I have always been a very conscientious and hard-working employee. I was suffering from an "invisible illness" that no one seemed to understand! Depression became a part of my daily life. At times I felt somewhat better and even had a good day here and there, but I was fatigued and exhausted 90% of the time because I couldn't sleep! My body ached all over. Life had become an endurance contest as I dragged myself through each day. Somehow I managed to keep up a smiling appearance, but inside I was miserable. I couldn't even remember what it was like to feel good anymore.
Finally in May of 1996 something happened that would change my life for the better. Through a series of unusual circumstances, I met an elderly woman who handed me a large manila envelope containing health information. She told me that someone had given the envelope to her, but since she was going into the hospital for surgery, she didn't feel up to reading it. I took the packet home and began to study it--and my curiosity was stirred! I had just gotten a computer, so I decided to do some research on the internet. Boy, did I learn a lot! Soon I had 95% relief of my pain, muscle stiffness, depression, sleep problem, fatigue, digestive problems and frequent illnesses.
An innovative immune technology has helped me greatly with sleep, and now I just use a very small amount of sleep med and it actually works! I made a list of things I tried for sleep--some worked, some didn't. My sleep page is at www.fms-help.com/sleep.htm. What is helpful for one insomniac can be devastating for another! It's a matter of trial and error...and we are the guinea pigs!
During my 14 years of severe suffering (1982-1996), I learned many things about this illness. I have written 100 Tips for Coping with Fibromyalgia and Insomnia at www.fms-help.com/tips.htm. My newsletter archives are located at www.fms-help.com/newsletters.htm.
I have heard from people all over the world with the same symptoms. Most report that a sleep disorder either launched their illness or has become a serious, debilitating problem in their lives. Insomnia and the resulting immune deregulation and fatigue have ruined the lives of millions of formerly productive people.
My sister-in-law who has a Ph.D. in virology told me back in 1990 that the hypothalamus was responsible for most of the symptoms I was experiencing. Interestingly, the latest medical research now on this illness is focusing on the hypothalamus (a master controlling gland in the brain). It is somehow becoming adversely affected (viral or mycoplasma infection?), causing deregulation in sleep, immune and endocrine (hormonal) function!
Although I sleep well at home now, I choose to not travel because I find sleep difficult away from home. Except for this hindrance, my life is very rewarding, full and busy. I am thankful for the improvements in my health--primarily getting better sleep. In my experience, if you get a good night's rest, the next day is a breeze! If you can't sleep, it's pure misery!
I wish I could sleep naturally without any medication whatsoever (not even the tiny bit that I still need), but I am very thankful for the sleep I get after 35 years of suffering with insomnia! I can't even begin to count the wasted and frustrating hours I spent tossing and turning ("rotisserizing") and watching the clock all night for so many years! I am so thankful that those dreadful nights are over!!!
I hope my site at www.fms-help.com is helpful for other sufferers of this syndrome. A list of what I personally use and do is at www.fms-help.com/what.htm. And don't forget to visit my sleep page at www.fms-help.com/sleep.htm with a list of things I tried for sleep.
Dominie Soo Bush
100 Tips for Coping with Fibromyalgia &
Insomnia
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FATIGUE SYNDROME HOMEPAGE
DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought. This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.