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.


Why Another Blog?

Let me start by prefacing that this blog is not intended to be an outlet to vent or express self-pity.  I have – and continue to live – a full life.  I have traveled extensively, lived abroad and in some of the most interesting cities in the world.  I have counseled students in rural Alaska and made chocolate milk on a kibbutz in Israel’s desert.  I have baked baklava on a small island in Greece and hiked the Inca Trail to Macchu Picchu. My most satisfying experience is getting married for the first time at the age of 50 to a loving, caring and funny Texan.  So life is good. No it’s great!

I was first diagnosed with CFIDS and fibromyalgia nearly 10 years ago though I cannot determine when I first started feeling weak and sickly. Was it after the drama I experienced in my early 30’s after a brief but painfully tumultuous relationship with a married man? Could it have begun a few years later after I had knee surgery resulting from a horse that did not want me to ride him? Or could this “invisible disease” been in my system most of my life? As a child, I was rarely very sick but I do remember not wanting to go to school sometimes because I just didn’t feel good.  No fever, no vomiting, no runny nose – just a general yuckiness.  Of course, such descriptions rarely got me a day off which may be why even today I feel like I should push myself when I don’t feel up to it.

I decided to begin a blog upon the advice of my acupuncturist in Waco, Texas.  I wanted to write a book of my life experiences thus far, not so much as a biography but as a testament to independence.   I wanted to write a love story because I never thought I would find someone who accepted me unconditionally and whom I could tolerate for the long term.  Even though a fortune teller in New Orleans told me seven years ago that I would find my soul mate and life partner, I was dubious (but still hopeful).  I wanted to explain how my affliction has impacted my life and my ongoing efforts to integrate its effect on my day to day life while still living a full and satisfying life.

The main purpose of this blog is for me to let go of some of the thoughts that invade my brain when I should be resting or sleeping.   For those of you reading my blog, I plan to share a bit of myself, educate readers about how CFIDS and fibromyalgia has affected my life, and my ongoing struggle in how best to adjust my lifestyle.   Most of all, I hope my musings express my love of life and any obstacle can be overcome by keeping options open, assessment and adjustment.

Today is Valentine’s Day and while my husband and I met and started our love affair more than four years ago, this is the first as a married couple and for that very reason, is so much sweeter.  I am in the midst of a severe relapse and my energy level is low yet I wanted to do something special.  Yesterday afternoon, I baked cinnamon rolls (yes, from scratch).  Of course, he couldn’t wait until this morning to taste them!  One of the several times that I woke up during the night, I put cards and his gift from the dogs and cat (a coffee mug with a stuffed pup inside) by the coffee pot and cinnamon rolls.

It’s a lovely Texas morning with temps rising into the 60s.  I just came back from walking with the dogs down the dirt road which I try to do daily.  This is one of my daily joys.  Zoe is nearly 13 and while her legs and hips are weakening, she still enjoys strolling by my side.  Homer is 5 and Luna just turned 1 year old in January.  The youngsters chase each other, wrestle, and jump on their hind legs like two bears going to battle.  On a day like today, Homer and Luna scoot under the barbed wire fence and race to the pond to cool down.  I used to go with them and throw sticks into the water but a close encounter with a water moccasin last fall keeps me from going near there anymore.

When I feel stronger, I will again walk to the end of the road to our mail box.  It’s only ½ mile to the main road but I am trying not to push myself.  I have been told for years that exercise is important for CFIDS and fibromyalgia but overdoing it is counterproductive.  It is a fine balance that I am still trying to figure out.  Last Monday, I felt so good that I walked, spent two hours on my project so someday I can earn my M.Ed. in school counseling, and rode my stationary bike for 30 minutes with level 3 resistance.  I realize this doesn’t sound like much for a normal person but I was so satisfied with my full day.  Unfortunately, I crashed the next day.  I had to go two weeks without acupuncture and I could feel my body back tracking.  But I will continue to walk almost daily even if it is only for 10 minutes.

My loving husband just called and is taking me to a new restaurant in Meridian, Texas for all you can eat shrimp tonight.  I have so much more to say but will stop for now to rest and gather my energy for our date!