Selecting A Fibro Doctor
What To Look For
Home | Doctors Who Treat Fibro
Finding a doctor to help reduce your multiple fibromyalgia symptoms is far from easy. Physicians rarely advertise they treat this disease, and the trial-and-error process is both exhausting and unnerving. But throwing in the towel isn’t an option, so where do you begin? When asking seven experts for input on this topic, they all made one point: first consider what you want from a doctor before stepping into their office.
Setting Expectations
“A patient should do all they can to not set false expectations for what a physician can accomplish in general, and in one session in particular,” says therapist Don Uslan, M.A., M.B.A, L.M.H.C. “The high expectations of many fibromyalgia patients are one of the reasons some physicians shy away from caring for people with this illness.”
“Patients need to prepare themselves for a lifetime of chronic illness,” says Charles Lapp, M.D., of Hunter-Hopkins Center in Charlotte. He has devoted 30 years to treating fibromyalgia and related conditions. He cautions patients against seeking “cures or panaceas that don’t exit.”
“Many doctors find fibromyalgia too complicated and time-consuming,” says Lapp. He suggests you select a doctor who is empathetic, open-minded about fibromyalgia, and willing to work with you.
“It really boils down to character,” says Uslan. “Is this physician the type of person who is comfortable handling multiple, diverse, and ambiguous symptoms? Some physicians can handle complex medical conditions, and some can’t or just refuse to.”
Point of View
On the other hand, it is important that patients understand how doctors see them, says Thomas Fuller, Ph.D., a psychotherapist in Grand Rapids, MI. “Some doctors understand that just because fibromyalgia can’t be cured, it doesn’t mean it cannot be treated. These doctors will like the idea of taking care of fibromyalgia patients for the long run. They will see it as their job as a doctor and find it rewarding. Other doctors, however, will become frustrated.”
New Relationship
In preparation for the first office visit, fill out the online forms and bring a list of your medications. In addition, Alan Spanos, M.D., a pain specialist in Chapel Hill, NC, suggests that patients provide the doctor with a typed summary of whatever they feel is relevant to their medical care (one page max). “This quickly convinces the doctor that you are organized and can work collaboratively with him.”
“Psychiatrists accept that the first visit may be a ‘get to know you’ one,” says Spanos, but this is not the case for all doctors. When calling to make an appointment, inquire into the length of the first visit. Also ask if a “get to know you” session is part of the physician’s protocol for new patients. Upon meeting the doctor, reconfirm your desire for a “get to know you” session. Realize that the doctor must agree to this so that he can set aside his own agenda. In other words, delay the physical exam and lab tests.
“If the physician agrees, then the first visit becomes a chance to talk and ‘kick the tires’ mutually,” says Uslan. “This gives the patient a sense of the physician’s personality, his or her ability to make eye contact, be direct, and other qualities we look at when we form new relationships.”
Be Yourself
Uslan also suggests that patients be themselves. “Let the physician see you for who you are. Being ‘sick’ isn’t pretty or attractive. This first visit may, indeed, not go well. The doctor may not be your cup of tea or you may not be theirs. The physician can only accept you as you are, and the reverse is true, too. Try to relax. Your only responsibility it to be courteous and respectful.”
“Some people make up their minds within seconds of meeting a new person and don’t change them later,” says Spanos. “Others shift their views as they learn more about a person. The main signals to a patient that a doctor is not interested in treating fibromyalgia apart from blatantly saying, ‘I don’t treat fibromyalgia,’ are not specific answers. Instead, it’s tone of voice, body language, and if the patient felt hurried. Another clue is whether the appointment lasted more than 10 minutes.”
Avoid coming across as unreasonable, overwhelming, or demanding. “A doctor’s job is to recommend to the patient what he thinks is best,” says Spanos. “Doctors are not retailers. For a retailer, the customer is always right. A professional will feel insulted or irritated when a patient treats him as if they were a shopkeeper, obliged to pull whatever they are requesting off the shelf and hand it over. It’s an immediate turn off.”
Do You Treat Fibro?
Initiating conversation is often awkward but shouldn’t be painful. Patients need to know up front if they are even in the right place, says rheumatologist Robert Katz, M.D., of Rush University Medical Center in Chicago. If you are going to a doctor whom you know nothing about, then you can ask:
‘Will you accept me as a fibromyalgia patient? Are you comfortable with it?’
“If patients ask the doctor in this way, they don’t have to feel rejected personally. They can feel the doctor rejected the disease, not them,” says Katz. “You need to find a doctor who is interested in fibromyalgia, but they do not have to be an expert. They need to be nice, compassionate, and willing to take it on. You need to find a doctor who can say right from the start, ‘Yes, I treat fibromyalgia and am comfortable with it.’”
Fuller says patients can find out a lot about the doctor’s philosophy on treating fibromyalgia by asking:
“What do you find works for your other fibromyalgia patients?”
“The quality of the answer tells the patient quite a bit,” says Fuller. At this juncture, you may feel like you are in the wrong doctor’s office. Just cut your losses and thank them for their time.
Asking Questions
If you’ve survived the first two minutes, it may be time to address your medical concerns. But before diving into specifics, have respect for the time restrictions of the visit. Reviewing an exhaustive list of symptoms could gobble up precious time without getting anything accomplished.
What kind of questions and how many should you ask on the first visit? Uslan recommends that you hand the physician a short list of your most important concerns. However, clearly indicate that you do not expect the doctor to address more than two or three. The rest can be discussed during future appointments.
“Any question is appropriate as long as it is respectful. However, only one of the three may be fully addressed. This is what you are hiring your physician for … not to handle volume, but to provide quality and depth,” says Uslan.
“Doctors are used to being asked gently, what kind of approaches they favor for treating illnesses, but not being quizzed in detail,” says Richard Podell, M.D., of the UMDNJ-Robert Wood Johnson Medical School. “Since fibromyalgia affects so many organs, patients should inquire if the doctor uses a multisystem approach. In other words, prescribing physical therapy, medication, addressing sleep problems, nutrition, exercise, and psychotherapy to help with coping.”
“If all they do is prescribe medications, but they are also sympathetic and supportive, at least you know, says Podell. “Also beware that some doctors push exercise limits as if the patient were a high school athlete. This is not good. Exercise should be increased slowly.”
Other worthwhile questions include: Is he or she willing to discuss pain management options and medications? The same goes for sleep. Also, do they have time to see you every six to eight weeks? This is important during the first few months to get your symptoms under control.
Patient Advocates
Due to cognitive dysfunction, patients often want to bring a spouse or friend to help them remember what was said. Yet, doctors sometimes view a third party as time-consuming. A third person also slows down the rhythm of the visit, particularly the initial one.
“You may wish to inquire about this on your first visit,” says Uslan. “I certainly would never hire a physician who blatantly said, ‘No.’ But I wouldn’t make this a main “litmus” test. You may know how to be pleasant and courteous as a patient, but what about your friend or family member? Just clarify this issue with your doctor first.”
Bad Signs
“If you notice during the course of your visit that the doctor doesn’t give you time to talk, doesn’t read your history, doesn’t give you time to ask questions, and doesn’t ask if you understand what they are saying—that all counts against him,” says Podell. “When trying to select a doctor, this caveat is always true, but especially so for people with fibromyalgia who have many symptoms.”
“Avoid irritable or arrogant doctors” says Uslan. “Working with fibromyalgia is a humbling experience for a provider. If you find they are the type of doctor who needs to ‘get it right’ and ‘know the answer’ or ‘fix it,’ then they probably aren’t going to do well with fibromyalgia. Also, be careful that the doctor doesn’t make generalized comments about anything, but especially about fibromyalgia.”
“A sure sign of ‘burnout’ or incompatibility with handling conditions like fibromyalgia are statements such as, ‘fibromyalgia patients always …’, or anything that characterizes a fibromyalgia patient in a negative way,” says Uslan. “Physicians can have experiences that some fibromyalgia patients are demanding or never satisfied. But still, they shouldn’t assume this applies to all patients.”
“Also, take note of the waiting room and how the front office staff handles patients or interacts on the phone. A poorly managed staff is not the place to receive care for fibromyalgia.” These days, many doctor’s offices are not even set up to answer calls from patients. Instead, they have answering machines that say they are busy helping other patients and will get back to you. This arrangement is not a good match for a person with fibromyalgia.
Front Office Staff
Asking front office staff members about the doctor and his treatment is questionable and possibly risky. “Front desk staff are often selected for their loyalty to the doctor and their competence at keeping callers from making contact with him or her,” says Spanos. “A good, loyal receptionist will always swear blind that their doctor is a cross between Jesus, Albert Schweitzer, and Mother Teresa. Often the front desk person may correctly say, ‘Oh yes, he sees a lot of patients with XYZ illness.’ However, they may be unaware that the doctor thinks these patients are all fusspots that he treats with contempt.”
The Exit
At the end of the first whirlwind visit, you need to assess if the doctor addressed at least some of your questions. Can this provider listen and hear you? Does it seem like he will do his best in a compassionate manner and use the resources available to help? Did he seem interested and honest? Are you leaving the office feeling better about yourself?
“Every relationship with a patient is different. Some of the best physicians simply get to know their patients, their idiosyncrasies, changes in physical symptoms and mood,” says Uslan. “If there is the likelihood that this physician can be the right one for you, then what do you need to do to be the right patient for this physician? You may need to ask yourself hard and critical questions such as, ‘Do I come across as unreasonable or demanding? Can she trust me not to be passive and say what my concerns are about medications?’”
If the physician has done a good job, express your appreciation. “It’s a terrible feeling for a physician who has dedicated his or her life to help people feel better and think that nothing they did made the patient’s life just a little easier,” says Uslan. “Sure, the doctor has reviewed the X-rays, lab tests, and prescribed medications, but a heartfelt, ‘Thank you for your time,’ from the patient is what any of us would hope for.”
About Fibro & Your Treatment Options
Although your goal is to find a doctor who will treat your fibromyalgia, it’s beneficial to know what it is and how it’s treated. To learn more about your symptoms and an explanation for why you have so many of them, check the article links below.
Symptoms | What Is Fibro? | What Causes Fibro (why so many symptoms)
To learn about your possible treatment options, check the links below.
Medications | Alternative Therapies | Muscle Pain Relief | Diet & Nutrition | Fibro-Friendly Exercises
Don’t Personalize
One survey of 9,000 physicians indicates only 38 percent know how to diagnose fibromyalgia, and fewer know how to treat it.1 Only half of the physicians you encounter will accept your illness as a real disease because many still view it as a psychosocial condition. What’s more, fibromyalgia carries a negative stigma.2 When doctors were asked if they would disclose the disease to their healthcare colleagues, a majority said “no.”
The bottom line is that many doctors harbor negative attitudes about fibromyalgia. Some assume patients exaggerate their symptoms and others feel they have little to offer patients in terms of effective treatments. Obviously, these two factors make finding a doctor for your fibromyalgia a challenge. On the flip side, physical therapists do not view fibromyalgia patients as difficult to work with. So, consider leaning on a good physical therapist for hands-on muscle pain relief.
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References
- Agarwal A, et al. Physicians’ knowledge, attitudes, and practices regarding fibromyalgia. Medicine 103:31(e39109), 2024. Free Report
- McGhie-Fraser B, et al. Validation of the Persistent Somatic Symptom Stigma Scale for Healthcare Professionals. J Clin Epidemiol. 174:111505, 2024. Free Report