Finding a Fibromyalgia Physician
There are no hard-and-fast rules on finding a physician who will work with you to help get your fibromyalgia symptoms under control. When asking a variety of experts for their suggestions on this topic, they all made one point: patients should first consider what they want from the doctor before stepping into the 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 and cautions patients against seeking “cures or panaceas that don’t exit.”
“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.”
“Many physicians find fibromyalgia too complicated and time-consuming,” says Lapp. He suggests you seek a physician who is empathetic, open-minded, and willing to work with you.
New Relationship
In preparation for the first office visit, patients should fill out all the online forms and bring a list of their 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 (no more than a page). “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 and 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, such as a complete physical, ordering tests, etc.
“If the physician likes to do this, then the first visit shouldn’t be a complete physical with tests, but just a chance to visit with the doctor 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 just 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 after, and others shift their views as they learn more about the other,” says Spanos. “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 but tone of voice, body language, if the patient felt hurried, and 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 or her as if they were a shopkeeper, obliged to pull whatever they are asking for 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,” 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 have to go to somebody right from the start who can say, ‘Yes, I treat fibromyalgia and am comfortable with it.’”
Fuller suggests that patients could find out a lot about the doctor’s philosophy on treating fibromyalgia patients by asking:
“What do you find works for your other fibromyalgia patients?”
“The quality of the answer will tell the patients quite a bit,” says Fuller. If at this juncture or further along in the visit you feel like you are in the wrong doctor’s office, you may have to cut your losses and thank them for their time.
Asking Questions
If you have made it past the first few moments of conversation and things are going well, it may be time to get into specifics about your concerns and treatment options. Before diving into specifics, patients should 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 or second visit? Uslan recommends that you hand the physician a short list of your most important questions or concerns, but 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 handle or provide quality and depth when necessary,” says Uslan. “Every physician has to have enough of a ‘thick skin’ to professionally handle questions that may or may not be comfortable or easy to answer.”
“Doctors are used to being asked gently and briefly, 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 it would be worthwhile for patients to inquire if the doctor uses a multisystem approach to treatment – such as 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. One rheumatologist I know still advises pushing exercise limits as if the patient were a high school athlete. This is not good. Exercise should be increased slowly.”
Other questions that may be worthwhile exploring include: Is he or she willing to discuss pain management options and medications? The same goes for sleep. Also, will the doctor have time in their schedule to see you every six to eight weeks for the first few months?
Patient Advocates
Due to cognitive dysfunction, patients often want to know if they can bring in a trusted friend or spouse to help them remember what was said or instructed. Doctors sometimes view a third party as time consuming because it can slow down the rhythm of the visit, particularly the initial visit.
“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, respectful, and courteous as a patient, but does your friend or family member? Just clarify this issue with your doctor first.”
Addressing Opioids
Patients who are on opioids or wish to inquire about possibly using opioids to reduce pain are encouraged to proceed with caution. “Be sensitive about this. Patients need to know that this is a controversial treatment that the doctor may not be able to go along with,” says Spanos. “It may not be best to bring this up at the first visit unless there is plenty of time and things are going well. It’s like telling someone about your herpes on a first date.” Some possible second-visit approaches include:
“I’ve been reading that some people with fibromyalgia do really well with opioids, and some doctors prescribe them and others disagree and won’t even try them. I wonder what your feeling is about this?”
Or, “This medicine really does help better than anything else, but I realize it comes with a lot of baggage and that some doctors do and some don’t feel able to prescribe it for fibromyalgia. What do you think?”
Concerns about opioids are legitimate and you should not discount a doctor who wishes to avoid them. Ask what they can offer you as suitable alternatives to this class of medications.
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. “This caveat is true for any doctor, but especially so for people with moderate to severe 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 physician 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 physician doesn’t make generalized or bigoted statements about anything, but especially about fibromyalgia.”
“A sure sign of ‘burnout’ or incompatibility with handling conditions about 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 they shouldn’t make that assumption for all fibromyalgia 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
While there are no general blanket answers, 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. But often the front desk person or even the nurse may correctly say, ‘Oh yes, he sees a lot of patients with XYZ illness,’ but doesn’t actually know that the doctor thinks these patients are all neurotic fusspots that he treats with contempt.”
The Exit
After an often whirlwind first or second visit, patients need to reflect and assess if the doctor addressed some of the questions considered before the appointment began. 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, it is also important to express appreciation. “It is a terrible feeling for a physician who has dedicated his or her life to help people feel better and think that nothing they did helped or 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 patients is what any of us would hope for.”