Imagine feeling like you have the flu — all the time. Now imagine no one believes you. For people living with fibromyalgia, daily joint pain and body aches are an unfortunate reality. So are the denials from acquaintances and healthcare professionals.
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“When you have a broken bone, we can see it on an X-ray. If you have high calcium, we can see it on a blood test. But there isn’t a fibromyalgia test that definitively diagnoses it or rules it out,” explains pain management specialist Robert Bolash, MD.
To set the record straight, Dr. Bolash busts some common fibromyalgia myths.
Myth: Fibromyalgia is not real
Fibromyalgia is a real, chronic condition. It is characterized by widespread pain in the muscles, joints and tendons throughout the body. “In patients with fibromyalgia, their pain signals are turned up like you turn up the volume on a radio,” explains Dr. Bolash.
Other fibromyalgia symptoms include:
- Irritable bowel syndrome.
- Daytime fatigue.
- Thinking and memory problems.
- Numbness and tingling.
“Fibromyalgia is a syndrome, and a syndrome is a bunch of different symptoms that fit together. All these symptoms together lead us to a fibromyalgia diagnosis,” notes Dr. Bolash.
While there are no routine scans to diagnose fibromyalgia, the body doesn’t lie. For instance, pain-fighting chemicals inside spinal fluid provide some hard proof. “But we don’t take spinal fluid out of people just to make the diagnosis because that’s a pretty invasive thing to undergo,” relates Dr. Bolash.
“There are also ways to scan the brain to reveal how much sugar it’s using, which looks different in patients with fibromyalgia. But those aren’t things we routinely do in practice.”
Instead, doctors diagnose fibromyalgia by ruling out other conditions and performing a physical exam.
Myth: Only a fibromyalgia specialist can provide a fibromyalgia diagnosis.
Anyone can diagnose fibromyalgia. (OK, not just anyone.) But your primary care doctor is a great place to start if you suspect you have the condition. Doctors follow this process to get you answers:
- Medical history and physical exam. The first step is ruling out other conditions that could be the cause of your symptoms. “A lot of things can masquerade as fibromyalgia. We first look for the things that it isn’t,” says Dr. Bolash. “If you have pain in multiple areas, you could have rheumatoid arthritis or inflammatory muscle disease. There are about 100 different things that could overlap with fibromyalgia. We look to reasonably ensure that the person’s symptoms aren’t caused by any of them.”
- Symptom checklist. Doctors take a symptom inventory using a checklist called the widespread pain index. They divide the body into five areas: left arm, right arm, left leg, right leg and the trunk region. Dr. Bolash explains: “We look to see that the person has pain in four out of five areas and that the pain has been present for around three months.”
- Severity of symptoms. Doctors analyze the results from the symptom severity scale, a fibromyalgia test that assesses the degree of your symptoms. “We calculate a score based on the areas and the severity of the symptoms to help us understand if the person meets the criteria for fibromyalgia.”
Myth: To diagnose fibromyalgia, a person needs to have “tender points” in specific places on the body.
“The tender points, or the tender or tense areas, used to be part of the diagnostic requirements for fibromyalgia. But they have really fallen out of favor,” explains Dr. Bolash. “While people can still have tense bands or trigger points, that’s not part of the definition anymore.” In fact, about 20% of people with fibromyalgia will not have them.
Myth: Researchers have identified the causes of fibromyalgia.
Unfortunately, there is no known cause for fibromyalgia. “It may be genetic. It may be environmental. It may be some combination of both,” relates Dr. Bolash.
“In some patients, we do see some inciting events, such as a car accident, a physical trauma or even a psychological trauma. These events can be associated with the start of some fibromyalgia symptoms, but it’s not universal.”
Myth: There are no treatments for fibromyalgia trauma.
Doctors can prescribe medication to help you manage the condition. While they aren’t a cure-all, they can help you decrease pain and increase sleep. But Dr. Bolash cautions that medications make up only 20 to 30% of the treatment puzzle. The rest involves some key lifestyle modifications.
Myth: Prescription fibromyalgia medications are the only way to experience relief.
Dr. Bolash emphasizes there is a lot that patients can do to help themselves. “Most of the treatment doesn’t come in the form of a pill. It comes in modification of activities that the person is doing,” explains Dr. Bolash. That’s why it’s important to come at fibromyalgia management from all angles:
- Work on getting enough sleep and exercise. Low-impact activities such as walking and practicing yoga are great hobbies.
- Try to reduce — or get rid of — the stressors in your life. Or if you can’t, meditation and tai chi can help.
- Connect with a cognitive behavioral therapist to help manage depression.
- Become a fibromyalgia expert. Understanding the condition can help you manage it better — and advocate for yourself and your health.