Living with Chronic Fatigue Syndrome (CFS) or Fibromyalgia

Whenever someone is diagnosed with "Chronic Fatigue," just telling anyone of your diagnosis is a real curse. I think that's because everyone believes they are "fatigued," and the response you get to such a diagnosis is something like, "Well, I'm fatigued, too, maybe I should go to your doctor." Not funny.

As a single mother who had worked two, three and even as many as four jobs at a time to take care of a child with spina bifida and tethered cord syndrome, I thought I knew fatigue, too. It turned out, however, that I didn't even have a clue about fatigue until 1989/1990.

As I said, I was a single mother, working a full-time job (40-plus hours a week), a part-time job (25 hours a week), going to school full time and continued to do volunteer work in crisis intervention. When I began to feel fatigued, I was puzzled, but I seemed to be the only one. Over several months, I went to six different doctors and complained of fatigue. Each physician would ask what I did, request that I tell them about my schedule. Then, they would tsk-tsk me, do a blood count, and tell me to slow down, I was doing too much, tell me that it was no wonder I was tired. And send me back to work.

I was 35 years old and had worked those kinds of hours for eight years without constant fatigue. Left with no choice and no diagnosis, I'd go back to work. There WAS no slowing down, it wasn't possible in my life. I couldn't quit my jobs-I had a daughter who depended on me. And I was trying desperately to get my bachelor's degree so that someone-anyone-would give me a shot at doing what I dreamed of doing-writing-full-time. Without a degree, no one would give me that chance, so I pushed myself HARD.

For five months, I dragged myself to work and home again, and studied when I could. I knew that it wasn't normal to stop and sleep in the car on the way home from work, but I felt that driving on without resting wasn't safe. So each day, I'd stop in a parking lot somewhere along the way home, give my daughter something to occupy her for half an hour or so, and I'd nap for 25 to 30 minutes before continuing my drive home. Many nights dinner was Oreo cookies and a glass of milk because I was just too tired to cook (and it's something I love to do!). Each night, I'd lock up our home and go to sleep, often too tired to remove even my shoes. And on those nights I knew that if our house caught fire in the night, my little family would perish, because I was simply too tired to get out of bed without several hours of sleep.

Stop and think about this for just one second: have you ever been so tired that you couldn't get out of a burning building? That, my friends, is fatigue. Let me explain a little more. I have always taken pride in myself, in doing my best at whatever I was doing, in being a good person, a good mother, a good employee, a good whatever. But I was simply feeling too tired to be good at anything-all I wanted to do was sleep. Another problem was that I really couldn't sleep very well, because I hurt all over. I had no interest in a social life, no interest in a sex life, no interest in any life whatsoever, and every touch caused pain, even hugs from my number 1 fan, my daughter. My muscles ached, my bones ached, my joints ached. It hurt to breathe, and sometimes I was simply too tired to take more than a very shallow breath. TOO TIRED TO BREATHE. Again, I say: that's TIRED.

In early 1990, I began hearing about "chronic fatigue," and asked my most trusted physician what it was and how it is diagnosed. He told me that it would require a blood test-an expensive blood test, an antibody study. I admitted that he needed to do that blood test or put me in the hospital to find out what was wrong with me because I could not--would not--go on living with the unrelenting pain and fatigue.

The blood test showed that I had chronic mononucleosis. Now, let me stop here to say that some 20 years later there is still controversy about what chronic fatigue is, what fibromyalgia is, the diagnosis of one versus the other, and treatment of either. In 1990, chronic fatigue was in its infant stages and I'd never yet heard of fibromyalgia.

I spent the next ten weeks in bed, literally around the clock. I set my alarm to awaken and take my daughter to school; I came home and reset my alarm to awaken to pick her up at school. As soon as I got home, I'd reset my alarm again to awaken to take her to school, and I would promptly go back to bed. I must have shopped for groceries, paid some bills, prepared meals. But I remember none of it. I only remember the sheer relief of having someone acknowledge my fatigue and being put on medical leave (for 3 months) in order to rest.

After three months of bed-rest, I was able to return to work. That didn't mean I was well-it simply meant that three months of rest had restored me enough that I was able to manage my day-to-day work schedule.

What are the symptoms of chronic fatigue? Fibromyalgia?

Unrelenting fatigue: you feel too tired to eat, too tired to participate in activities you formerly enjoyed; you find yourself longing for rest; you are too tired to take care of yourself (personal hygiene, meal preparation, housework, etc.); at work, you are seriously tempted to lie down in the hallway or underneath your desk (I am not kidding here); you find yourself drowsing while driving or unable to stay awake for anything at all when you're at home. At one point, my decision on what to read was based STRICTLY on this: the paperback book weighed less than a hard cover one. In other words, I was TOO TIRED to carry a hard cover book from room to room. That's TIRED.

Tired parts: you may feel that your arms weigh a ton, each leg weighs as much as a freightliner, your arms and legs (or even your hands) are tired, as if you've been carrying buckets of cement or running up and down stairs all day.

Lowered resistance: if there's a sore throat or intestinal virus going around, you get it; you may be prone to ear infections, sinus infections, wound infections; you may get unexplained skin rashes, develop allergies or find that your allergies have worsened; you may develop female infections or urinary tract infections.

Pain: Muscle pain, aches that you cannot explain; bone and joint pain (can be achy pains or sharp pains or any other kind of pain). Your muscles may develop "charley horses," your toes/feet/legs/calves/thighs or any other part, really, can lock up and begin to pull and draw uncontrollably.

Menstrual cycle problems: you may have a period every 10 days to 2 weeks, or one that lasts for weeks (which means you could develop anemia); irritability; weepiness; drastic mood changes; lethargy.

Other Symptoms: Headaches, deterioration in vision, bad attitude, short-temper.

Certainly the symptoms of chronic fatigue vary from one individual to the next, but those listed above are fairly common for most CFS sufferers I know.

How does one LIVE with CFS and become happy and productive?

There are two main things that I attribute to my successful management of Chronic Fatigue.

1. Mental Attitude: If you have a "can do" attitude, and you're determined to beat the odds that CFS will be debilitating, then you can do it. I decided early on that I would NOT become disabled at 35 years old. It is important that you stay positive, and here are a few of the things that worked for me.

• Surround yourself with positive people;

• Avoid anything that drains your energy;

• Try new things;

• Learn to daydream;

• Meditate;

• Find things that excite you to learn;

• Know your limitations.

2. LISTEN TO YOUR BODY. This is a very hard one for most of us. If you have big plans for the evening and your body says you have to rest, you need to rest. Your body will let you know when it's okay to push yourself a little and when to stop - you MUST learn to listen. And I hated this part. I HATED being disappointed when I needed to sleep and wanted to do something else. I hated disappointing others (usually my daughter) when I needed to sleep and wanted to do something else. But I learned quickly that if I didn't get the rest my body let me know I needed, I would physically regret it.

What to do if you have symptoms of CFS or Fibromyalgia?

• Speak with your physician about his or her views on CFS and fibromyalgia. If he or she doesn't believe in it, get a new doctor, and find one who does.
• If your physician thinks you will be permanently disabled, find yourself a doctor who is willing to help you learn to manage your condition.
• Request an antibody study to find out exactly what antibodies your immune system is fighting, as these may well show that you have mononucleosis or some other cause for your symptoms.
• Don't listen to tales of woe from other CFS/fibromyalgia sufferers, because each case is different and each person needs to learn about her own body.
• Once you are diagnosed, if the medications approved for CFS/fibromyalgia create problems for you, tell your doctor right away. These can cause extreme dry mouth, sores in your throat or nasal passages, and many other really troublesome side effects. There are three or four medications recognized to be helpful for CFS/fibromyalgia, and you may-or may not-be able to tolerate one of these.
• Join a support group. There are CFS/fibro support groups in many cities and online, and you can talk with people who have dealt with this for quite some time. It helps to know you're really NOT alone in fighting the kind of pain and fatigue caused by these ailments, and you may learn tricks others have used in battling the symptoms.
• Some CFS/fibromyalgia sufferers experience depression with these conditions, and it's certainly great to be treated for depression should that be your case. But if you are NOT depressed, and you know you are not depressed, don't let anyone insist that you are suffering from depression. I believe that "depression" is used to label people far too often when there's a medical diagnosis underneath that hasn't yet been discovered.

Bio-Identical Hormone Replacement: One of the most effective things I know which may help the symptoms of CFS/fibromyalgia is bio-identical hormone replacement therapy. Bio-identical hormones are made from yams and soybeans, and contain hormones that fool your body into thinking they are your body's own natural products. Many of the symptoms of hormone deficiency are very similar to those of CFS/fibromyalgia, and you may well be able to offset those symptoms with bio-identical/natural hormones. Check your local yellow pages under Medical Spa, Natural Healing, or Alternative Medicine, or look for listings for Doctors of Osteopathy to find one who can evaluate you for this therapy.

Summary:

The one thing I can't say often enough is this: STAY POSITIVE. Find what works to keep YOU positive, as it's different for each of us. Your positive mental attitude can heal your physical body, so staying positive is the best thing you can do for yourself.