Diagnosing Fibromyalgia Can Be Long, Difficult Process

By Lana Barhum

Because of newer, comprehensive methods for treating fibromyalgia, including lifestyle approaches and medication, the prognosis for fibromyalgia patients is slowly improving.  But first a doctor needs to make an accurate diagnosis, which isn’t easy. 

On average, it takes 2 to 3 years to get a diagnosis, and research shows that people with fibromyalgia typically see many doctors before getting one.  Even with a doctor who is knowledgeable about fibromyalgia, it still takes time.

While much research has been devoted to fibromyalgia, a syndrome defined by debilitating widespread muscle pain, cognitive impairment, lack of restorative sleep and extreme fatigue, it is still contested by some in the medical community.  Moreover, there remains considerable disagreement about fibromyalgia's cause, whether it is psychological or physical, and how to treat it. 

That lack of conformity is unfair to the millions living with the real pain and sickness fibromyalgia brings in its wake. Fibromyalgia takes a toll on mental and physical health, relationships and quality of life.

“People with fibromyalgia suffer from severe, daily pain that is widespread throughout the body,” says Dr. Leslie J. Crofford, an NIH-supported researcher at Vanderbilt University. “Their pain is typically accompanied by debilitating fatigue, sleep that does not refresh them, and problems with thinking and memory.”

Why Does a Diagnosis Take So Long?

The one thing the medical community does agree on, is that fibromyalgia is difficult to diagnose. But why does it take so long?  Here are some possible explanations. 

Fibromyalgia is not considered a disease.  It is a syndrome, which means a cluster of signs and symptoms that occur together, and create an abnormality or condition. 

Fibromyalgia symptoms often don’t make much sense.  Sleep issues, extreme fatigue, anxiety, headaches, widespread pain and so much more could be attributed to any number of health conditions or bad habits, such as insomnia, stress, not drinking enough water, or smoking.  Additionally, symptoms vary from person-to-person and their severity is constantly changing. 

There are also no universally accepted labs or diagnostic tests for fibromyalgia, so doctors must rely on symptoms to make a diagnosis. Physicians also have to make sure the symptoms are not caused by another health condition.

Criteria for Diagnosing Fibromyalgia

In 1990, the American College of Rheumatology’s (ACR) diagnostic criteria involved physical examination of specific tender points on the bodies of fibromyalgia patients. If patients had at least 11 or 18 tender points, they were given a diagnosis of fibromyalgia.  It was the only method available at the time for diagnosing fibromyalgia, but studies would later point out the limitations of this method.   

The 2010 ACR diagnostic criteria, updated in 2011, utilizes a widespread pain index criteria and a symptom severity score.  In 2016, researchers updated the criteria yet again, reporting their revisions at the ACR's annual meeting in September. 

They determined that a doctor who is knowledgeable about fibromyalgia can make a diagnosis based on symptoms that include widespread pain lasting more than 3 months, as well as other symptoms, such as debilitating fatigue.  Moreover, the doctor must consider the number of areas on the body where the patient has had pain over the past few days and the severity. Lastly, he or she must rule out other potential causes of the patient's pain and symptoms.

It wasn’t until late 2015 that fibromyalgia was finally recognized as an official diagnosis and given a new ICD-10 code (10th revision to International Statistical Classification of Diseases and Related Health Problems, a medical classification list by the World Health Organization). This came as a result of many medical advances over the last decade in understanding and acknowledging fibromyalgia.  

Regardless of how far we have come in research and awareness, until there are conventional methods for testing fibromyalgia, it will continue to remain a diagnosis of exclusion.   Doctors will continue to rely on a description of symptoms and pain from patients, which can be difficult to articulate for most people. 

Patients' Responsibility

In late 2008, I was finally diagnosed with fibromyalgia based on the 1990 criteria.  I know firsthand that living with a cluster of deliberating symptoms and unexplained pain can be frustrating. 

I don’t recall the exact date I was diagnosed, the onset of my symptoms, or what triggered my illness.  What I do recall is that for ten very long years, I visited countless doctors as my pain worsened and the list of symptoms continued to grow.  I would inform doctors I was hurting and extremely exhausted. Some mornings, I couldn’t even get out of bed.  Some treated my symptoms as psychosomatic and others tried treating my physical symptoms. And of course, there were the ones who viewed me as drug-seeking.

Despite my difficult and frustrating experiences, I took responsibility for my health and finding answers.  All I ever wanted during that ten year period was to be believed, but it took a lot of physical and emotional pain to get that.

I know anyone struggling to find answers feels the pain and sentiment in my saying that a diagnosis finally gave me my life back.  It truly did, and even though finding successful treatments has proved challenging, having an actual diagnosis has made life a whole lot easier.

Medicine has come a long ways in diagnosing fibromyalgia, but doctors still need to rely on descriptions of symptoms and pain from patients, which is challenging.   As a patient, it's up to you to keep track of all your symptoms.  Write them down. Note what causes them or worsens them or decreases their intensity.  Most importantly, be aware of how symptoms and pain affect your life.  This will assist your doctor in determining what is wrong and how best to treat it.  

Remember to trust your instincts, stand up for yourself, keep looking for answers and don’t be deterred. 

Lana Barhum lives and works in northeast Ohio. She is a freelance medical writer, patient advocate, legal assistant and mother.

Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, visit her website.

Dealing with Fatigue, Frustration and Fear

By Jennifer Martin, Columnist

Sometimes it just gets to be too much; the pain, the fatigue, the frustration and the fear. 

Wondering if things are ever going to get better. 

Wondering if there will ever be a day without pain.

I have always thought of myself as a stubborn and determined person.  When I was four years old I had to wear a cast on my right leg to help stabilize my arthritic ankle.  Even at four, I didn’t let that stop me from keeping up with my twin brother on the playground.

While I was in the middle of my j-pouch surgeries I was determined to finish my doctorate degree.  I finished my dissertation and two weeks after my second surgery, while in pain and out of it because of the pain meds, my mom drove me to L.A. so I could defend my dissertation and get that “doctor” title that I had worked so hard for.

Three months ago I hurt my right knee.  After two rounds of prednisone, physical therapy, rest (sort of) and X-rays, my rheumatologist still doesn’t know what’s wrong and I still have pain every day.  Since the injury, and against the wishes of my husband to stay home and rest, I have continued to go to the gym so I can at least get a kick ass arm workout. 

Why have I done all of these things?  Because I’m stubborn.  And I’m determined.  I try my hardest not to let the pain stop me from doing the things I want to do.  I try to be as normal as possible, because I hate feeling like I can’t do something and I hate for others to think that I am weak, even though I know that I am not.  I also try to take advantage of each day as much as I can because I never know when or if I will be in the hospital again, when or if I will have to have another surgery, or if my arthritis will get worse.

But sometimes it just gets to be too much.  Dealing with pain every day is tiring!  And dealing with the fatigue that comes along with the pain is tiring!  In addition to that, the frustration and fear that things will never get better and that they could possibly get worse can be incredibly overwhelming.

So here is what I do when things get to be too much.  I hope some of these tips will help those of you reading this:

  • I take a little time for myself, even if it’s just five minutes.  If I am at work, my favorite thing to do is close my office door, open YouTube on my computer and put on some yoga music.  Then I sit back, close my eyes and take deep breaths.  This does amazing things for my mind and my body.
  • I try to remember what is good and positive in my life: my son, my husband, my family, my friends.  While I still have pain, there is still so much I can do.  It helps to focus on what I can do instead of what I can’t do.
  • Get outside.  I love the beach.  It does something for me that no other place can.  But I can’t always get there, especially with family and work demands.  If I can, that’s my preference, but if I can’t, even just sitting in my backyard can do the trick.  Fresh air and vitamin D are proven mood elevators.
  • I write.  Writing about the pain, the frustration and the fears can be very therapeutic.  Have you ever wanted to vent so badly about the way you are feeling but don’t want to bother anyone with it?  Writing down exactly what you would say to someone else is a great alternative.
  • I focus on a goal and plan on how I am going to reach it.  This helps me to focus on something other than my pain and fears.  It can be a big goal (passing my final licensing exam) or a small one  (doing as much as I can this weekend with my son despite my knee pain).
  • Sometimes I just have to take a rest and realize that it is okay.  This is really hard for me to do but sometimes it is necessary.  Those of us with chronic pain can’t be expected to do everything and we can’t expect ourselves to do everything. 

Balance in life is key and part of that is taking care of ourselves and letting go of the guilt that comes along with it.

Jennifer Martin, PsyD, is a licensed psychologist in Newport Beach, California who suffers from rheumatoid arthritis and ulcerative colitis. In her blog “Your Color Looks Good” Jennifer writes about the psychological aspects of dealing with chronic pain and illness. 

Jennifer is a professional member of the Crohn’s and Colitis Foundation of America and has a Facebook page dedicated to providing support and information to people with Crohn’s, Colitis and Digestive Diseases, as well as other types of chronic pain.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.