Inside The Constant Pain Of Fibromyalgia On Its Awareness Day
"Patients tend to describe fibromyalgia as living in a world of constant pain," said Dr. Shari Calicker.
May 12, 2022 at 1:14 pm
May 12 is National Fibromyalgia Awareness Day. Fibromyalgia is a disorder caused by the brain perceiving normal sensations as pain due to the enhancement of peripheral sensory signals. The disorder includes symptoms like chronic widespread body pain, fatigue and sleep disturbances, among many other issues. It affects about 12 million people in the United States, including Morgan Freeman, who considers his condition a remnant of a 2008 car accident. While some doctors speculate fibromyalgia can be brought on by previous injuries or psychological stress, not much is known about the musculoskeletal disorder.
To better understand fibromyalgia, how it’s diagnosed and what people who have it can do for relief, Blavity spoke to Dr. Shari Calicker, a Florida-based family medicine doctor with moderate experience treating fibromyalgia patients.
Living in a world of constant pain
While fibromyalgia patients represent less than 4% of the U.S. population, Dr. Calicker has treated more than 50 patients with this disorder over her five-year career. Classic symptoms include tenderness of muscles at tendon insertion sites, joint stiffness all over the body, mood disturbances, forgetfulness, problems concentrating and focusing and limitations in physical functioning.
Since the invisible illness cannot be seen under a microscope, it is diagnosed by exclusionary measures, meaning known diseases are ruled out before a doctor decides a person may have fibromyalgia. People with the incurable disorder show no visual symptoms and often struggle to explain the levels of pain and other related issues that accompany it.
“Patients tend to describe fibromyalgia as living in a world of constant pain,” Dr. Calicker told Blavity. “Even when they try to be active and do things for themselves, it is very difficult as the fatigue and pain tend to come quickly and last for multiple days. Medications sometimes give some improvement, but overall monitoring their behaviors and triggers is how they manage their lives.”
It's not easy to diagnose and systemic inequities make it harder
“Fibromyalgia requires a multi-disciplinary approach to treatment,” Dr. Calicker said. “Both patients and physicians must be patient, continuously listening and learning while navigating this disease process as well as open to nontraditional ways of treatment.”
Women are more often diagnosed than men, and Black folks are least likely to be diagnosed, but that doesn’t mean they are exempt.
“There are several theories including hormonal differences, sociocultural stressors and the fact that women are more likely to identify tenderness on palpation than men are,” Dr. Calicker said. “There are not any other demographics that tend to be more affected, but white individuals do tend to be diagnosed more often than racial/ethnic minorities. This is mostly due to the lack of equity in our healthcare system.”
Because of the complexities of it all, Dr. Calicker said she tries to be incredibly sensitive when discussing the disorder with patients.
“This is a very difficult diagnosis and most patients have been experiencing symptoms for a long time without a clear answer. I let patients know that fibromyalgia is essentially your pain processing a light touch or movement and very severe pain and that it is also associated with fatigue and fluctuations in mood. Most importantly, I set expectations for the course of the diagnosis and what we can be expected — that the goal of our treatment is to control the symptoms and improve functionality and not necessarily the eradication of symptoms.”
Unfortunately, fibromyalgia is incurable.
The opioid crisis impacts fibromyalgia treatment
Because the disorder cannot be seen, people with fibromyalgia can struggle to access the treatment they need because it all seems psychosomatic. So when they complain about severe pain, it’s not always likely that they will receive top-notch pain medication.
“Especially in the age of the opioid crisis, as soon as the word ‘pain’ is mentioned and there is no evident cause present, patients may not receive the care that they so desperately need,” Dr. Calicker said. “Even worse, patients may receive a delay in care or may receive inappropriate treatment of pain and other symptoms. It is important for patients to find a provider they feel comfortable with — that will listen and try their best to find solutions.”
Incidentally, pain medications are commonly prescribed for fibromyalgia. Other treatments include muscle relaxers and anti-depressants.
“Opioids have also been used, but should be considered once all other efforts have been exhausted,” Dr. Calicker said. “It is important when finding a medication that helps with pain that we remember that the goal is for pain relief and functional improvement, not complete pain relief.”
Fibromyalgia symptoms may be treated holistically
Dr. Calicker said that aerobic exercise in moderate increments is helpful with pain management.
“Eastern practices can also be helpful, like yoga, tai chi and acupuncture,” she said. “These practices may be a little easier to navigate, and also decrease stress both physically and mentally.”
Another nonmedical treatment is mental health counseling. Fibromyalgia can be incredibly taxing on the body, as it can cause mental limitations.
“Therapy is also helpful to address not only the mood disorder but to have an outlet for patients to navigate their diagnosis. Oftentimes, patients feel alone and don’t feel comfortable sharing their true feelings with those close to them. Therapy can help navigate and redirect thoughts, which have been shown to improve patients’ outlook on their diagnosis,” Dr. Calicker said.
Dr. Calicker said that herbal supplements are also recommended.
“Alternatives should still be discussed with your provider to see how they will work with any concurrent treatment you are receiving and also so they can monitor progress with different interventions to help develop a good routine,” she said.
Physical therapy can help patients get back on their feet.
“Because of the symptoms of fibromyalgia, it is difficult for patients to be motivated to move. Physical therapy is a way to have accountability for movement with directed exercises and has been shown to improve pain and fatigue symptoms in patients with fibromyalgia,” Dr. Calicker said.
A healthy mix of several of these treatments can dull the symptoms quite a bit, but as Dr. Calicker said, the support of a medical professional is strongly suggested.
You can show support by listening
The most important resource anyone who loves a person with fibromyalgia can provide is a listening ear.
Oftentimes, people with invisible illnesses struggle to be seen or heard in the most needed ways. If you know someone with fibromyalgia, try your best to understand what their body is experiencing without offering unwanted advice or suggestions.
“No two fibromyalgia patients present the same,” Dr. Calicker said.
If any of the symptoms discussed in the article make you believe you may need to be evaluated for fibromyalgia, please contact a healthcare professional to begin the diagnosis process.