This is something that Kristal Kent, a disabled Army veteran diagnosed with fibromyalgia and the founder of Veteran Voices for Fibromyalgia and The Fibromyalgia Pain Chronicles, knows all too well. In her search for a fibromyalgia specialist, she recalls one expert who seemed promising on paper but dismissed her fibromyalgia during the visit, calling it a “wastebasket diagnosis” — a catchall for symptoms that don’t neatly fit a disease’s specific parameters. Kent walked out of the appointment. “When we see doctors who continuously dismiss us, and they’re being paid — whether out of our own pockets or by insurance — we’re inadvertently compounding those stereotypes that some medical providers have,” she says.
Misconceptions about fibromyalgia can make it challenging to find a specialist who validates your experiences and offers compassionate care. But the right doctor is out there. You just need to find one with the right qualities. You can get a sense of whether a provider is a good fit for treating fibromyalgia by looking for someone with:
1. Experience Treating Fibromyalgia or Other Chronic Neurological Disorders
One research review found that only 38 percent of general practitioners have a clear understanding of the diagnostic criteria for fibromyalgia. You may need to look past your primary care provider to find the right fibromyalgia care. Unfortunately, there is no single doctor who treats fibromyalgia, which “makes finding a provider a challenge,” says Kent. “If you go to a rheumatologist, they might say they don’t treat fibromyalgia. And if you go to a neurologist, they might say you should see a rheumatologist. We get bounced back and forth.”
As a result, you may need to work with multiple providers. Or you could find someone who doesn’t necessarily specialize in fibromyalgia, but shows a willingness to partner with you to learn and navigate the symptoms and diagnosis together, she adds.
According to Gerard Limerick, MD, PhD, an assistant professor of physical medicine and rehabilitation at Johns Hopkins Medicine in Baltimore, a few specialists tend to treat fibromyalgia more than others, including:
- Rheumatologists
- Neurologists
- Physiatrists
- Physical medicine and rehabilitation specialists
It can also help to find a provider who has fellowship training in chronic pain, he adds.
2. Positive Patient Reviews
When looking for a fibromyalgia specialist, it can be helpful to hear from people with firsthand experience: their patients.
Start by searching for fibromyalgia specialists near you, and then read ratings and testimonials from actual patients those specialists have treated, Kent advises. “That’s how I found my current pain management and rehabilitation doctor,” she says. Kent asked her primary care provider for a referral back in 2014, and he’s been helping her manage fibromyalgia ever since.
3. Access to Other Specialists
Fibromyalgia often goes hand in hand with other health conditions, including:
- Anxiety or depression
- Digestive disorders, such as acid reflux, irritable bowel syndrome, or slow digestion
- Headache or migraine
- Jaw pain
- Lupus
- Osteoarthritis
- Pelvic issues, such as endometriosis (in women), interstitial cystitis, pain, or prostatitis (in men)
- Rheumatoid arthritis
- Urinary issues, such as an irritable or overactive bladder
One sign of a good provider is that they’re transparent about the limits of their expertise, willing and able to refer you to other specialists, and happy to work closely with those specialists to manage your care. “One provider can’t manage all of these nuances within fibromyalgia on their own,” says Kent. “If you have any other issues going on, you need to find medical providers in those specialties as well.”
4. A Comprehensive Treatment Approach
“Fibromyalgia is not the type of pain disorder you can manage with just oral medications. You want to make sure you find someone who emphasizes a comprehensive, holistic approach,” says Dr. Limerick.
5. Empathy and a Collaborative Spirit
Research shows that empathy from a provider greatly impacts the quality of doctor-patient relationships.
“Find someone who listens to you and doesn’t dismiss your complaints,” says Dr. Hackshaw. “When people don’t feel rushed, they feel heard. And that strengthens the physician–patient relationship.”
Kent knew right away that her current fibromyalgia specialist was the right fit. “He took my symptoms seriously, did not minimize my concerns or experiences, and was comfortable communicating and collaborating with other doctors and making referrals as needed.”
Collaborative care is essential for managing any chronic condition.. “Look for providers who recognize you as an equal partner in your own healthcare, encourage self-advocacy, value your input, respect your lived experiences, and support shared decision-making for your treatment,” she adds.
Don’t Give Up on Finding a Fibromyalgia Provider
Finding the right partner for you for fibromyalgia care can take time. It’s just like dating, says Kent. “You’re going to meet a lot of individuals, but it might take some time to find the right match.”
Plus, the right fit for you might not be the right fit for someone else. “Everybody’s different with what they want out of their treatment,” she says. Think about your individual needs and preferences and what matters most to you when it comes to your care.
The Takeaway
- Many people with fibromyalgia feel misunderstood or dismissed by doctors. Finding a provider who validates your experiences and has expertise in fibromyalgia or pain management can improve your care.
- The best fibromyalgia doctors offer holistic treatment plans, connect you with the right specialists, and treat you as an active partner in managing your health.
- Reading patient reviews, prioritizing empathy, and being patient in your search for a provider who suits your needs can help you build a strong doctor-patient relationship.
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