What is Chronic Fatigue Syndrome and Fibromyalgia?

The Mayo Clinic website describes fibromyalgia as:

Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

In this interview, Connie Luedtke, R.N., the nursing supervisor of the Fibromyalgia and Chronic Fatigue Clinic at Mayo Clinic, Rochester, Minn., answers questions about some of the most common misconceptions about fibromyalgia.

What is the most common misconception about fibromyalgia?
The top misconception is that people think fibromyalgia isn’t a real medical problem or that it is “all in your head.” It’s sometimes thought of as a “garbage-can diagnosis” — if doctors can’t find anything else wrong with you, they say you have fibromyalgia. Being diagnosed with fibromyalgia does require that you meet specific criteria, including painful tender points above and below the waist on both sides of the body.

There’s a lot that’s unknown about fibromyalgia, but researchers have learned more about it in just the past few years. In people who have fibromyalgia, the brain and spinal cord process pain signals differently; they react more strongly to touch and pressure, with a heightened sensitivity to pain. It is a real physiological and neurochemical problem.

Why does this misconception persist?
In our society, people tend to think that there is a cure or a fix for every medical problem. You go to the doctor, expecting he or she will fix whatever’s wrong with you with medication or surgery. It’s frustrating to people with fibromyalgia because the traditional treatment approach isn’t effective. And it’s also frustrating to health care providers because they want to help people. But there’s no easy fix. It takes lifestyle changes and small steps toward achieving wellness. It’s a process.

Also on the Mayo Clinic website:

Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that may worsen with physical or mental activity, but doesn’t improve with rest. Although there are many theories about what causes this condition — ranging from viral infections to psychological stress — in most cases the cause is still unknown.

When I was first diagnosed in my early 40s, I had vaguely heard of CFS but had never heard of fibromyaglia.  Even though I had not felt strong and healthy for what seemed like forever, all I wanted to know was how I was going to get better.  After being referred to an rheumatologist by my astute internist who first suggested fibromyalgia, I developed a strong relationship with the specialist who I believed saved my life.  Dr. S told me that we had to go through a series of tests to rule out other diseases but he was sure that CFS was my primary affliction and fibromyalgia was secondary.  Once lupus, lyme disease, and several other scary illnesses came back negative, Dr. S and I began to focus on what he had initially suspected.  He told me that I was not going to die and that some day, my symptoms would likely go away.  He said he could do the best he could to help me manage and function but that there was no cure.  Instead of being devastated by my diagnosis, I was relieved.  As Dr. S said, my illness is not imaginary and it is not emotional.  CFS and fibromyalgia is a real and physical disorder.  This may sound crazy but in my 30s, when I was tired and not in the mood to go out with friends on Friday night because I could barely move by the end of the week, I thought I was just getting old.  I didn’t feel depressed but I couldn’t pin point what was wrong with me other than feeling tired and getting kind of sick all the time.  I was reassured and determined to once again get well and live fully and productively.

The most urgent issue was that I needed to be able to function for the next month as I was planning and leading a mission of 200 Clevelanders to Israel for a week.  I was Assistant Director of Community Relations at the the Jewish Community Federation of Cleveland at the time and I was committed to making my colleagues feel confident in my abilities and offer a unique and exciting experience for participants.  Dr. S loaded me up on a number of different medications – anti-viral, anti-depression, pain, steroidal, and a few sleeping pills – and I somehow managed to keep going.  When we first landed in Tel Aviv, we were told that yet another suicide bomber had just killed a number of people on a bus and my first concern was, “oh no, everyone will want to turn around and return to New York!”  Fortunately, everyone wanted to stay and the mission was a huge success.  When I got home, I crashed and was forced to stay home for a month to regain my strength.

I began to research cfs and fibromyalgia and explore alternative means of healing as I did not want to be dependent on a dozen prescriptions for the rest of my life.

In the next posting, I will talk more about alternative and integrative medicine.

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LBWebb Coach

Passionate, compassionate, opinionated.

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