A Chronic Fatigue Syndrome (CFIDS) Patient’s Story: Becky R.

Becky is thirty-two years old and lives with her partner in Seattle. They have three guinea pigs and one cat. She has tried a variety of techniques, including physical therapy, chiropractic, and naturopathy, to deal with the symptoms of her CFS. But, as she reminds us, there is no quick fix to the problems related to chronic illness.

When I became ill, I had just finished college and was kind of in transition. In 1989, I developed a bad sinus infection; it was the first one I ever had. It hung on, and I have never shaken it since. What motivated me to finally go to the doctor was finding that I couldn’t function. I was diagnosed fairly quickly. I was really lucky I found my current doctor, because I had heard horror stories from other people about bad doctors.

I had a major trauma in college; the guy I was dating was killed in a freak accident. When my CFS was diagnosed, I didn’t draw any connection with that at all. But recently, I’ve heard people talk about the fact that trauma can trigger CFS and FM in some people. I don’t know if that really triggered it, but it probably bad something to do with it.

I think I have all the symptoms of CFS: the chronic sore throat and sinus problems, and a bit of depression. I’ve done physical therapy for my neck; I’ve done acupuncture for neck pain and chronic fatigue; I’ve done chiropractic; I’ve done it all, with temporary relief. The neck pain, especially, seems to come and go in these vicious cycles: if my neck hurts, it keeps me up at night and then the fatigue is very bad. When the fatigue is bad, I kind of lie around, which makes my neck worse. I feel like there’s some inherent weakness in my body and it’s manifesting itself in all these different ways. It’s never been confirmed that my symptoms are related.

Some days it gets bad, but most of the time, it’s maybe a two or three on a scale of one to ten. At least I can function. It goes up occasionally, when I go into cycles and the fatigue tends to get worse.

They have a physical medicine department at my clinic, so I’m seeing a naturopath for fatigue and digestive issues, and I get a lot of massage treatment and craniosacral work. The clinic is right around the corner from my home, which is great. Seeing the naturopathic doctors has really opened my eyes to the fact that the body is a system. It amazes me, the power the body can have-if there’s one little thing out of whack, it influences the entire system. This differs from the view of conventional doctors, who try to treat each individual symptom. I’ve learned to look at my body as my own.

My new naturopath began treating the chronic neck pain and was more effective than any providers I had seen previously. When I began complaining more and more about my constant sluggishness, fatigue, and weight gain, and the fact that they seemed to be getting worse despite the antidepressant medication I was taking, she began talking about a thyroid condition called Wilson’s Syndrome.

I mentioned that I had previously had several blood tests to screen for hypothyroidism, and all were within “normal limits,” even though my symptoms seemed to be consistent with an underactive thyroid. My naturopath explained to me that thyroid tests measure the amount of inactive thyroid hormone in the body. Wilson’s Syndrome is a condition in which the body is not able to convert inactive hormone into active usable hormone. So a blood test could be normal and there still could be hypothyroid conditions occurring. To confirm this possible diagnosis, she asked me to check my basal body temperature every day for two weeks. Sure enough, my temperature was consistently in a range significantly lower than 98.6 degrees Fahrenheit. I began taking liothyronine (T3 hormone).

This condition seems similar to CFS/FM but this is not recognized by many doctors as anything more than unproven rhetoric. Yet after only a few days on T3, my basal body, temperature rose to a normal level, and it stabilized after three weeks on the medication. I was able to finally quit taking antidepressant medication, and I do not miss it at all! My naturopath also validated my hunch that my neck pain might be related to the fatigue and depression. I have noticed that my worst days, energy-wise, are also the ones when my neck hurts the most.

We are continuing to treat my neck pain with physical therapy, exercises, and chiropractic adjustments. My energy level over the last few weeks has been higher than I can remember in many years. And I feel like the “fog” is finally beginning to lift. I strongly encourage anyone who is dealing with chronic fatigue, pain, or depression to explore Wilson’s Syndrome as a possibility.

I’m learning to discipline myself better as far as my eating habits are concerned. There are still some days when I just have to have some Ben & Jerry’s, but I’ve learned to make it an occasional treat instead of a staple. And I’ve learned that when I’m knocked-down-dragged-out tired, I need to accept it and forget whatever else I had planned to do, because if I’m that tired, I need to rest. I’ve missed a lot of things I wanted to do because I’ve been too tired, but I’m learning to not plan so much. What I really need to do is rest.

In the long run, my life has changed for the better, because I’ve become so much more aware of my pain. I learned a technique in which I spent an hour or so every day blocking out the external and turning my senses inside. It was something that actually brought quite a bit of pleasure into my life. But I found I was too tired to do it on a daily basis. That’s what made me say, “Enough is enough.” I can deal with taking a day off work here and there, but when I wasn’t even up to fulfilling my own contentment every day, I knew that something drastic had to happen.

In the spring of 1990, I met my spiritual teacher. That’s been an incredible journey, and it continues in self-awareness and self-appreciation. I don’t think you can call it work on a spiritual level, because it’s a lot more tangible, but on a practical level I’ve really been working on being aware of my illness. My situation hasn’t changed, but working on my spiritual health has given me more energy to deal with illness. You can’t get better until you accept it.

Source: Skelly, Mari, and Helm, Andrea. “Alternative Treatments for Fibromyalgia and Chronic Fatigue Syndrome.” Hunter House Publications.

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