Dr. Sharlin: Understanding the Symptoms of Fibromyalgia
This is a common scenario in my office: “Do you believe in fibromyalgia? My doctor doesn’t. My doctor says it does not exist.” For the record, I do believe in fibromyalgia, and it does exist. While it may seem like doctors who would say such a thing live under a rock, it is probably more accurate that they recognize the common symptoms but have few tools to address them, so they retreat in frustration. This is one of several reasons I became a functional medicine-trained neurologist – because my conventional neurology toolbox was too small, too limited to truly help my patients.
Let’s begin with a discussion of the symptoms of fibromyalgia.
To explain the symptoms of fibromyalgia I have to begin with a discussion of what the symptoms are and how they are used to make the diagnosis. Like a migraine diagnosis, a fibromyalgia diagnosis is based on the patient’s symptoms. (P.S., I wrote a blog entitled How to Know If Your Headache Is a Migraine earlier this year that you might want to check out.) In the strictest sense, if you want to know if you have fibromyalgia, you should refer to the 2016 diagnostic criteria from the American College of Rheumatology (ACR). In a nutshell, the diagnosis of fibromyalgia depends upon the following:
- The presence of generalized pain, defined as pain in at least 4 of 5 defined regions.
- A time-course requirement which says that the pain has been present at a similar level for at least 3 months.
- A symptom severity score which explores, on a scale from 0 (no symptoms) to 3 (severe symptoms), the presence of fatigue, waking unrefreshed, and cognitive symptoms.
- The presence of headaches, pain or cramps in the lower abdomen, and depression.
Not everyone has all of these symptoms, and symptoms are present to different degrees in different people. The ACR addresses this point by providing a scoring system to make the final diagnosis.
If fibromyalgia is a disease, then can it be measured?
I find the ACR’s working definition helpful, but it leaves me feeling unsatisfied. While it provides a level playing field that we all must agree upon when making the diagnosis, it doesn’t provide a framework for why my patients have fibromyalgia or how their symptoms can be treated. It traps us in the “pill-for-an-ill” approach which targets symptoms with drugs, but never addresses the underlying problems. It also does little to address the question in the beginning of this blog, which is whether fibromyalgia is a real disease or not. The Merriam-Webster dictionary defines disease as “a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs or symptoms.” By this definition, fibromyalgia is a disease.
Let’s take this to the next step. Since the diagnostic criteria for fibromyalgia rely on self-reported symptoms of pain, feeling unrefreshed upon awakening, brain fog, headache, pain or cramps, and depression, the question arises whether there are things that can be measured independently of self-reported symptoms. The short answer is yes. But pain, the main symptom of fibromyalgia, cannot be easily measured in the doctor’s office. It is necessary to look elsewhere.
For example, people with fibromyalgia often have changes in the normal beat-to-beat variation of their heart rhythm, known as Heart Rate Variability (HRV). Specifically, HRV goes down. This reflects a dominance of their sympathetic nervous system (“fight or flight”) over their parasympathetic nervous system (“rest and digest”). Also, people with fibromyalgia have objectively worse scores on tests of working memory and executive function (organizing, planning, prioritizing and carrying out learned tasks). They have sleep studies which show fragmented sleep with increased arousals, decreased slow wave sleep and Rapid Eye Movement (REM) sleep. Finally, about half of all fibromyalgia sufferers have loss of the small nerve fibers in the outer layer of their skin that transmit pain and temperature information to the spinal cord and brain (“small fiber neuropathy”).
What are biomarkers and do they exist for fibromyalgia?
The hot-button topic these days when evaluating and treating a wide variety of conditions is the “biomarker,” which is short for biological marker.
According to the Dana Farber Cancer Institute, a biomarker “is something that can be objectively measured and is a sign of a normal or abnormal process, or a condition or disease. A biomarker can be a molecule found in the blood or other body fluids or tissues. Another type of biomarker is a genetic signature or fingerprint – a pattern of activity in a set of genes that reveals some biological condition.”
With the idea of a biomarker in mind, we must ask whether fibromyalgia can be further defined – not just by symptoms – but by a biomarker? Or, whether successful fibromyalgia treatment correlates with changes in one or more biomarkers?
The answer here is less clear.
However, several studies have correlated higher levels of chemical messengers of inflammation called pro-inflammatory cytokines with individuals who are affected by fibromyalgia, and a correlated reduction in cytokine levels with treatment of fibromyalgia. These cytokines include Interleukin-1, Interleukin-6, Interleukin-8, and Tumor Necrosis Factor-Alpha. Other biomarkers that have been studied include altered levels of chemicals secreted by gut bacteria as measured in urine. This suggests that people with fibromyalgia have alterations in their microbiome compared to those who do not have the disorder. Research has also demonstrated increased markers of oxidative stress, decreased levels of coenzyme Q, and altered mitochondrial activity – the energy-producing factories of our cells – in people with fibromyalgia. These findings make sense. When you cannot make energy, you feel weak and fatigued, and your brain doesn’t work the way it should.
Why do people get fibromyalgia?
I hope I have convinced you that fibromyalgia is a real disease and that there are several ways to understand the symptoms. What hasn’t been discussed here is why some people get fibromyalgia in the first place.
Functional medicine is the medical specialty that focuses on the why and is most adept at unraveling chronic conditions in all their complexity – offering many “whys,” not just one.
A functional medicine doctor recognizes that there are many causes, and the causes are different for different people, even when the diagnosis is the same. In general, we can point to the influence of diet and lifestyle, including sleep, stress resilience, environmental factors such as toxins and infections, gut and hormonal imbalances, imbalances in the immune system, and psychological, cognitive, or behavioral factors, including adverse childhood or adult experiences.
If you have fibromyalgia, you may be frustrated by how doctors treat your condition. Medicines may be helpful in taking the first steps to heal from this disabling condition, because they make you feel somewhat better. But they do not change the disease trajectory, and no one ever gets better – truly better – with a treatment plan that includes medicine only. That’s why my Brain Tune Up! Program uses all the tools in The Healthy Brain Toolbox.
If you need medicines, I can prescribe them. If you don’t, or don’t want them, I won’t. Together we can take the deep dive to investigate all the root causes of your condition and help you create an integrative plan for healing that includes diet, lifestyle, and environmental factors. Ultimately, this is about helping you get what you really want, that old familiar you – or a version of you that is even better!.