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“IT’S NOT IN MY HEAD!”
Thimos G. Paschalis, M.D.,
Internal Medicine

 

“I was beginning to think I was loosing it.  I couldn’t think straight, I couldn’t sleep, and the constant nagging pain was taking it’s toll on me both physically and emotionally.  Then, when doctor after doctor simply shook their heads, patted my arm condescendingly, and said I should be relieved to learn there was nothing wrong with me, I figured, hey, maybe it is all in my head.”  Mary B. - age 47
 

“I’ve have run out of ways to describe the pain, and even my best friends are getting tired of my yawning in their faces.  I ache all over, I have absolutely no energy or enthusiasm about anything anymore, and no one can figure out what’s wrong with me.  Even I am getting tired of listening to myself whine about how absolutely awful I feel all the time.” Kathy S. - age 38

“I don’t know what’s worse...feeling rotten all the time, or people thinking it’s all in my head.  I’ve been healthy all my life and suddenly I can’t get up off the couch without shooting pains in my knees and hips.  My chest hurts, my back hurts, my neck hurts, my stomach is upset way too often, and I have an overwhelming sense of fatigue most of the time.  I’m tired of people telling me I’m just stressed out.  To top it all off, I know this is beginning to impact my performance at work.  I try to leave all this ‘at home,’ but it’s getting harder and harder to do that.”  Faye - age 41
 

Imagine being one of the estimated 7-10 million Americans who often suffer from debilitating pain, chronic fatigue, and mounting anxiety.  On their road to diagnosis, they waited for the results of an endless variety of medical tests, withstood a lot of skepticism and sometimes outright ridicule about their aches and pains, and yet managed to clutch a shred of hope that the next test would finally reveal all the answers and offer an end to the frustrating symptoms.  Their scenario gets worse, however, before it gets better.  For this disorder there are no blood tests or x-rays or scans to confirm or deny a diagnosis, and -- while most of the sufferers are women between the ages of 20 and 50 -- there are no specific age or ethnic indicators that typify those at risk.  To complicate things even further, not everyone experiences the same symptoms, or has them all the time.  There are also about 12 million people who share these symptoms who remain undiagnosed because of its elusive nature.
 

These people suffer from Fibromyalgia Syndrome (FMS)-- called a syndrome because it is not one specific illness or disease, but rather a condition entangling several symptoms that occur coincidentally.  The disorder causes widespread and chronic body pain which originates in the muscles.  While many sufferers say their “joints ache,” Fibromyalgia is not a form of arthritis at all, and it will not cause the gnarly joint deformities often associated with that disease.  There are, however,  some very specific points -- called “tender points” or “trigger points” -- that are the epicenters of the pain and discomfort.  In fact, a “mapping” of these points are the foundation for making the FMS diagnosis.


Fibromyalgia differs significantly from the medley of aches and pains that seem to go along with normal aging.  Certainly if you are experiencing some localized pain -- from too much exercise or exertion, for example -- you might loose a little sleep.  People with FMS, on the other hand, are often more chronically sleep deprived; they are never completely rested, refreshed or renewed.  To make matters worse, they also regularly suffer from headaches, swollen and tender lymph glands, numbness and tingling sensations, Irritable Bowel (or Bladder) Syndrome, mood swings, depression, restless leg syndrome, and intolerance to heat or cold.  No question about it... experiencing a persistent combination of these symptoms -- coupled with the fact that no one knows what causes FMS -- and having everyone think it was all in your head could tend to make a person cranky and despondent.
 

The good news is that FMS patients do not become crippled from the disorder, and there is no evidence that their life expectancy is shortened.  Balancing quantity and quality of life is a very subjective thing.  For many people with this chronic ailment, the constant pain and fatigue, high medical costs with little or no results, overall stress and anxiety can certainly  influence the way they cope with it in the long run.  People with FMS can expect some good days, some very good days, as well as some bad and even worse days.  Perhaps they can take some encouragement from the fact that FMS is not a harbinger for some more severe or serious disease like MS or lupus, but even that consolation doesn’t make up for the really bad spells when doing anything at all requires supreme effort.
Reaching a Diagnosis...
 

To say that Fibromyalgia is difficult to diagnose is an extreme understatement.  A patient seeing her doctor for a check up might report having frequent headaches, dizziness, fluid retention, crampy abdominal or pelvic pain, diarrhea, problems with remembering things, a feeling of anxiety, and being achy and stiff all over.  Top the list off with her complaint about being just plain exhausted.
 

Approaching menopause?  Anemia, or perhaps a thyroid condition?  The blood and lab tests all come back negative for anything that might produce these symptoms, and x-rays show no joint problems.  Where do you go from there?
 

It is not surprising that FMS has been incorrectly thought to be a psychosomatic or inflammatory condition.  No connection with arthritis has been discovered, however, and it is now believed that depression or anxiety once thought to cause FMS, is more accurately the result of the chronic, painful condition.  There is some evidence that FMS might be due to an abnormality of deep sleep which could account for the reduction of an important hormone (somatostatin) essential to maintaining good muscle health. Ongoing scientific studies, which were discussed in Congressional testimony  in 1998 to encourage additional funding for FMS research, suggested that two neurologically important substances known to be involved in the generation of persistent pain have turned up in pathologically high concentrations in the central nervous system of individuals with FMS.  This indicates that Fibromyalgia may well be a central nervous system disorder rather than a musculoskeletal disorder.
 

Research under the aegis of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) show that abnormally low levels of the hormone cortisol may have a connection with FMS.  At various medical research centers around the country, scientists have found that people whose bodies don’t make enough cortisol experience similar symptoms to FMS, so they are studying how to regulate the function of the adrenal gland (which produces cortisol) in fibromyalgia patients.  Other research centers are concentrating how the brain might be involved and are focusing on how magnetic resonance imaging (MRI) and magnetic resonance spectroscopy (MRS) which have been proven effective in evaluating muscle disorders, can be used as diagnostic tools.
 

In 1990, the American College of Rheumatology established some diagnostic guidelines to help narrow the process.   The ACR stated that FMS can be diagnosed with clinical precision in patients with “widespread musculo-skeletal pain and multiple tender points.”  The organization defined pain as being widespread if there is pain in both sides of the body and above and below the waist, and pain must be present in 11 out of 18 specific areas of the spine and chest (see diagram) for a FMS diagnosis.  The pain -- not just tenderness -- has to occur when palpated (touched with some pressure) at those points.  The history of pain must also have been present for at least three months. 
 

It should be pointed out that not all doctors agree with these guidelines -- some think they are too rigid and others think a patient can still have FMS if she doesn’t meet the required number of pain points.
How is Fibromyalgia treated?
 

One of the major complaints of FMS sufferers is that they cannot find doctors who are willing to “keep after it” until the problem is finally diagnosed and a treatment regimen is proposed and underway.  Many say their doctors “throw in the towel” and just say there is nothing more that can be done to end the pain or solve the problem...sorry.  (This kind of scenario has actually appeared in two distinguished medical journals : Arthritis & Rheumatism and Journal of Rheumatology.)  The American Fibromyalgia Syndrome Association, Inc. is in the forefront in helping to erase this outdated attitude through research and educational programs. 
 

The treatment for FMS begins with education...period.  In a situation where there is no known cure and the symptoms are so many and varied that can mimic other illnesses; where there is no “hard evidence” to document the pain or its cause; and where chronic fatigue can exacerbate the other symptoms the more you know about how your body works the better equipped you will be to make informed and rational decisions about your treatment options.  There are many excellent resources available on the Internet, through a variety of dedicated research and support organizations, and the local library will also provide access to current information.  This quest for knowledge is up to you.
 

Also critical to the treatment process is developing a strong, direct relationship with your doctor or doctors.  Since it is generally accepted that the condition is life-long, you simply must be able to talk candidly about what’s bothering you, and you have to develop a bond of mutual trust during treatment.  If you don’t have this kind of relationship, search until you find it.  Ask your health care providers if they have any experience in treating FMS and related conditions, and ask about their approach to treating it.  For additional information about selecting a doctor, contact the Fibromyalgia Alliance of America (614-457-4222).
 

As with most chronic diseases, the extent to which a person with FMS will “give in” to the pain or symptoms, depends to a large part on her confidence in her medical team, the support and encouragement she derives from friends, family and loved ones, and her ability to maintain a sense of humor, stamina and determination to keep going.  Many FMS patients will also need treatment for depression or anxiety, and there are medications effective in doing this.  It is important to point out, however, that since FMS is not a psychogenic pain problem, treating these or other psychological problems will not result in a cure for fibromyalgia.


There is not just one treatment plan for FMS patients, and while there some steps that help reduce the symptoms, each case must be treated individually.  Fortunately, the combination of lifestyle changes, exercise and sometimes medications can be effective in relieving symptoms. Many FMS treatment programs include:
 

ADEQUATE SLEEP -- In just about any circumstance, chronic fatigue can color everything you do, so identifying the cause for the sleep disturbance and treating is a first step.  There are some sleep inducing medications that should be avoided, however, because they have an effect on the quality of deep sleep.  The important thing is to set a pattern for regular sleep hours and try to stick to it.
 

REDUCE STRESS -- Research indicates that stress can make FMS symptoms worse.  There are some very effective methods to manage stress, but the foundation for getting it under control comes from within.  You have to make the decision that you will control your life...and that means learning that “NO” is an answer.  Allowing others to put the “shoulds” on you simply piles on undeserved feelings of guilt that can lead to more stress.  Determine your own priorities whenever possible; there are lots of ways to say no gently.  Treasure your “down” time and guard the activities that renew you.  Investigate taking a course in biofeedback or participate in a support group that might help you simplify your life.
 

GET REGULAR EXERCISE -- Many FMS patients complain that they already hurt, how could they possibly get more exercise.  Ongoing research suggests that even though it might be painful at first, the overall benefits of a regular exercise regimen -- low impact aerobic exercise like walking, swimming or bike riding -- make it all worth it in the long run.  Set a schedule of three or four sessions of about 20 minutes exercise each week.  If you miss a few days, don’t try to make it up in one longer session; just resume your regular program.
 

MEDICATIONS -- Moderate use --under your doctor’s supervision -- of over-the-counter analgesics might help minimize the pain and stiffness.  As appropriate, your doctor may also prescribe specific medication to relieve depression or to help you sleep.  Do not, however, take any medications or remedies without your doctor’s knowledge.  There are drug combinations that might be contraindicated or even dangerous, and FMS patients don’t need anything to make their symptoms worse.
 

It will take determination and commitment on the part of both the FMS patient and her doctors to minimize the pain and symptoms.  The pain is not going to go away overnight -- the treatment program will have to be given time to work, and it may have to be modified or expanded.  Unfortunately, there is no magic wand to make all the symptoms and discomfort go away; this is, after all, a condition that can last a lifetime.  Hopefully, the right treatment combination will be found to make living with FMS bearable.  One of the strongest weapons in this war chest is the patient’s attitude, however hard it may be to laugh in the face of adversity...so give it a try.  Cherish pleasure and jealously guard the things that make you happy.  Visualize a good quality of life and do the things necessary to achieve it; jettison the things that simply add stress without long term gain. 
 

THIMOS G. PASCHALIS, M.D.
Internal Medicine

Physician’s Group of The Woodlands
1011 Medical Plaza Drive, Suite 120
The Woodlands, Texas 77382
(281) 296-8500

Dr. Paschalis completed his undergraduate studies (B.S., Biology) at Baylor University, Waco, TX and earned his Medical Degree from the University of Texas Medical School in Houston. He completed his residency with the University of Texas at Internal Medicine Program at Houston. He and his wife, Tonya, live in The Woodlands and are the proud parents of a daughter.

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