Tips on how to get the most out of a doctor's visit

Finding a primary care physician has become a challenge for many patients around the country and this is becoming a frequent topic reviewed in magazines. Even aside from someone seeking medical care for ME/CFS or FM, time allotted for appointments with physicians is shrinking. So patients, like it or not, must prepare for them as carefully and thoroughly as possible.

Many, but not all, of the tips and recommendations listed below are those provided by Dr. Lucinda Bateman in a workshop at the 2007 International Association of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) Conference.

• Primary care physicians/providers should be personable, open-minded, accessible and up-to-date. As patients, many of us realize that finding someone who satisfies even these four qualities might be a challenge. One important thing to remember is that this will be the doctor with whom patients will likely have the most contact and therefore, this needs to be someone with whom they can comfortably communicate.

• Many patients will try to stay with their current PCP but might find as their needs change, or their condition becomes more complicated, that their doctor does not adequately understand the scope of their illness. If their doctor is at least open-minded and will accept information about the illnesses, then it is still possible to work with him/her. However, if patients find their doctor is not listening to them, not believing in their symptoms or dismissing them in some way, or becoming apathetic or rude towards them, then they will need to find someone else.

• Try to get more information about new PCPs before making the switch (i.e. before actual transfer of medical records and designating him or her on an insurance plan). Some practices, at least in the past, were agreeable in having patients meet and have a short, general discussion with a given doctor about their knowledge and working experience with ME/CFS or FM (often referred to as "meet and greet" appointments). Another option might be to call and review the same information with the office manager.

• The role, skill and scope of the primary care provider is another important issue to understand. It is reasonable for patients to expect that their PCP will provide them with urgent care (assess an urgent problem or direct patients for appropriate care), help them receive a diagnosis for any given problem (whether the PCP is able to do so on his/her own or needs to refer patients to a specialist for evaluation), help to manage chronic symptoms or conditions, and check that preventative testing or care is getting done. From a patient's experience, this is how primary care should be ideally provided. But realistically, there will be times when some PCPs will prefer to turn over certain aspects of the illness to other doctors. One important area of debate is who is best able, or willing, to take on pain management.

• Plan ahead and schedule follow-up appointments while at the doctor's office. Arrive to appointments on time or early (the extra time can help people gather their thoughts and recover from travel to the office). The goal is not to waste any of the consultation time.

• Prepare as much relevant information as possible ahead of time for an upcoming consultation, especially by having a list of current medications readily available, completing forms at home (ask if these can be mailed or transmitted ahead of time), and identifying which symptoms/problems will need to be addressed at this appointment.

• Keep a personal journal (whether in a notebook, in the blocks of a large calendar, or on the computer) to track symptoms, medications, reactions to medications and/or what might trigger some symptoms. This tool can help patients not to overlook anything at the visit and maximize time with the doctor.

• Once at the office, limit the conversation on niceties and unrelated issues to a minimum. Also, don't waste time with the doctor on things that s/he would likely not be in charge of, such as billing questions, bad parking, or some other non-medical matter.

• Go to the appointment with the above information written down, but keep it short. Perhaps go in with only an outline of these concerns and problems. Keep as much information as you want for your personal use, but it is better to condense this information for a doctor's visit.

• Consider using other ways to quickly and effectively communicate symptoms with the doctor—create a small chart of primary, recurring symptoms (i.e. sleep, mood, pain, fatigue) and rank these from 1 to 10, or create a pain diagram (using an image of a body, front and back) and highlight and note areas of pain. These can also be effective tools by which to monitor improvement or changes. A word of caution from a patient's perspective—don't go overboard with this sort of thing and recognize that some doctors may totally misinterpret these efforts by thinking patients are far more functional than they are just by being able to compile this information, or viewing them as becoming overly obsessed about their illness (by the attention they are giving it).

• Try to coordinate presentation of symptoms to how most doctors handle their office visits—they follow an approach called SOAP—subjective (this is part of patient-reported problems), objective (data captured/ reviewed by the doctor), assessment, and plan. Therefore, prioritize and bring up symptoms and concerns at the beginning of the appointment. Above all, don't hold out on bringing up an important problem until the end of the visit—even if there is some hesitation or embarrassment about it.

• If the doctor starts to ask questions before all symptoms can be brought up, then politely remind him or her that there is more information to be shared on that problem, or that there are several other problems to cover at this appointment. If there will be many problems and concerns to be reviewed, be sure to schedule an extended appointment.

• Know your insurance plan, and what it will cover or not, ahead of time. Remind the doctor about plan limits or high co-pays, especially when certain tests or medications are being proposed.

• Know your medications—learn their proper names, dosage, how they are to be taken and their general purpose. When listing these, organize them by purpose, because this can help the doctor easily see the conditions for which patients are being treated and what is being used. Include any supplements or herbal medicines and provide all healthcare providers with the same list. Be sure to review risks and benefits of each medication, as well as interactions. Medications and relevant information (like side effects) used in the past should be listed separately from those currently taken on a regular basis.

• Identify and know your conditions and their status. For instance, if someone has sleep apnea, note the date of the last sleep study and whether any equipment is being used as part of treatment. If someone has a thyroid problem, note the last relevant test results and what medications are being used to control this problem, and so on.

• Know, keep track of, and arrange for your own basic preventative screenings and tests (i.e. GYN exams, mammograms, or prostate exams). It is also recommended that patients be aware of when periodic lab tests should be ordered while on certain medications.

• Ask for and receive a copy of all lab tests done and keep in a file folder or binder. If you can scan them and keep copies on the computer, that is helpful as well.

• Know what the general criteria are for ME/CFS or FM and how you meet the case definition for these illnesses. This is something patients can use if, or when, some doctors might say they do not know anything about ME/CFS or FM, or claim the illnesses don't exist. Consider printing this information and having it available for a discussion with a doctor.

• Most patients find it may be very helpful or even necessary to bring a family member or a friend (complete appropriate HIPAA privacy forms first) when meeting with a specialist and/or when a lot of information needs to be exchanged. It can be very difficult to concentrate and absorb details when learning about a new medical problem. Also, ask for the doctor to write down the diagnosis, certain terminology that s/he used during the consultation, medications, and/or anything else relevant to this particular problem.