Finding & Working Productively with Doctors
By Bruce Campbell
Doctors can play an important role in treating CFS and fibromyalgia, but with long-term illness, both they and you have different roles than in acute illnesses. Because your condition is an ongoing one and you are the day-to-day manager, the patient/provider relationship is more appropriately a partnership. You play a key role, selecting the members of your health care team and working with them to improve your quality of life.
It is reasonable for you to expect some things of the people helping you. They should know about your illness or be willing to learn about it. They should believe your illness is real, treat you with respect and be willing to experiment to find treatments that work in your individual circumstances.
You have responsibilities as well. You should have realistic expectations of your providers and communicate these expectations to them. You might say something along the lines of "I'm not expecting you to cure me, but I hope we can work together to find things that will help me feel better." You should treat your visits as professional meetings and prepare for them, as described below.
Sources of Help
Given the complexity of chronic illness and the likelihood of having several medical problems, you may well want to assemble a group of providers to help you live better with your illness.
Physicians: Medical doctors often seen by CFS and fibromyalgia patients include both primary care physicians and specialists. Among the latter are rheumatologists (doctors who specialize in arthritis and related illnesses, including fibromyalgia), psychiatrists (doctors who specialize in mental and emotional problems and who prescribe medications for problems like anxiety and depression), doctors who specialize in pain management and doctors who treat sleep disorders.
Other Medical Providers: Doctors may refer you to physical or occupational therapists, who can help you address problems through physical manipulation, exercise training and adjustments to daily activities. Many patients also receive spinal adjustments from chiropractors.
Other Sources of Help: You can receive help with emotional problems triggered by long-term illness from psychologists and therapists. They work both with individual patients and with families. Massage therapists provide relief with hands-on treatment. Nutritionists address problems with nutrition and food allergies. You may also get help from teachers and group leaders if you join exercise programs or take classes in subjects like yoga or Tai Chi. Lastly, fellow patients, while not professionally trained to treat CFS or FM, can provide support, understanding and inspiration.
Finding a Doctor
You can be forgiven if you feel frustrated about finding sensitive and appropriate medical care. Studies suggest that it typically takes several years to receive a diagnosis of CFS or fibromyalgia, a period in which patients are often told things like "it's all in your head." I would encourage you to persevere in your search for doctors who believe you when you say you are sick and who treat you with respect. In our experience, patients who have sought sympathetic and knowledgeable physicians have usually found them.
How do you find a doctor who is knowledgeable and whom you trust? One good starting point is referrals from fellow patients. Support groups are often a good way to meet other patients. The CFIDS Association of America maintains a state-by-state list of CFS support groups in the United States. They will mail a list of groups in your state at no cost. (You can contact them at 800/442-3437, email your request to SupportGroups@cfids.org or send a self-addressed, stamped envelope to The CFIDS Association of America, Attn: Support Group Info, PO Box 220398,Charlotte,NC 28222-0398.)
The Arthritis Foundation sponsors fibromyalgia support groups in many places. For information on groups and physician referral lists by area, visit their website: www.arthritis.org. For other lists of FM support groups, see the website of the National Fibromyalgia Association (www.fmaware.org) and also the Immune Support website ( www.immunesupport.com/supportgroups/ ), which also has listings for CFS groups.
Other resources for finding doctors include the "Good Doctors" list at Co-Cure (www.co-cure.org/Good-Doc.htm), the FMS Community website (http://fmscommunity.org/findingadoctor.htm) and Devin Starlanyl's site (www.sover.net/~devstar/provider.htm ).
Your doctor and other health care providers are important allies in your effort to live well with your illness. This section contains some suggestions for making these relationships productive. I'll focus on the doctor/patient relationship, but the principles apply to most of the other providers as well.
Because you have a long-term condition, you have the opportunity to establish long-term relationships with your physicians. As with other significant relationships, you should feel comfortable expressing your ideas and discussing alternatives. You should also be able to negotiate a treatment plan acceptable to both of you. Because there are no standard treatments for either CFS or fibromyalgia and because treatments may be effective for a limited time, you and your physicians should agree that treatment will consist of experiments, some of which may work, some of which won't and others of which will work only temporarily.
If you have found physicians who are supportive, who want to help you feel better and who are willing to experiment to find which treatments help you, the biggest obstacle to a good relationship is time. Particularly in the current medical environment, doctors work on a tight schedule that often leaves them as frustrated as patients. By viewing your visits with them as professional meetings, you can structure your time productively. One way to make your visits productive is by "taking P.A.R.T." The letters mean Prepare, be Active, Repeat, and Take action. (This acronym is adapted from advice about doctor/patient relationships in The Arthritis Helpbook by Kate Lorig and James Fries.)
Prepare for the visit by asking yourself why you are going and what you expect from the doctor. Make a list of your questions or concerns. Are you worried about a new symptom? Would you like a new medication? Do you want the doctor to submit a document supporting a disability claim? Write down your concerns, recognizing that probably no more than two or three issues will be addressed in one visit.
As part of your preparation, consider rehearsing a concise description of your symptoms and situation. Studies suggest that doctors allow around 20 seconds for a patient to describe her concerns before interrupting, so be prepared to state succinctly your concerns and what you want from the doctor. Describe your problems and goals concretely, so the doctor knows they are manageable within the constraints of the appointment. Instead of saying, "I have a lot to talk about today," begin with something like, "I would like to talk about my pain."
Your opening statement might include when your symptoms started, where they are located and what changes in your life might account for them. Also, consider reporting the effects of previous treatment, for example the effectiveness and side effects of a medication. If you are uncertain about whether you can explain yourself adequately or remember the doctor's response, you might ask someone to accompany you to the appointment.
Take an active role in your appointment. Begin the visit by describing briefly your main concerns. You might say something like, "I came in to talk about improving my sleep. I've been having trouble falling asleep and I wake up several times during the night. The drug I've been taking doesn't seem to be effective any more. I hope we can discuss what other medications I might try." You may want to include a reference to your thoughts and feelings about the problem. For example, if sleep is your problem you might say, "I'm concerned because I've been doing better overall and I'm afraid that poor sleep may make all my other symptoms worse and I'll be back where I was two years ago." If you have a written list of concerns, give it to the doctor.
In addition to making a clear and concise statement of your concerns, take an active role in the meeting by interacting with the doctor. If you don't understand something, ask her to explain it again. If you think a proposed treatment won't work or you are unwilling to try it, tell the doctor. Ask when the effects of a treatment are likely to appear and how long you should continue a treatment. Ask about side effects of proposed treatments and what alternative treatments, both medical and lifestyle change, are available. Ask also about the likely results from not treating. If your insurance doesn't cover all the proposed treatments, make your financial constraints known.
To be sure you have understood, repeat back to the doctor the key points she has made. For example, you might state that you understand the doctor is recommending you treat your sleep problem by taking two medications, one to help you fall asleep and the other to help you stay asleep.
If you don't understand or are not clear, ask the doctor to repeat. The purpose of repeating is to make sure that you and the doctor have a common understanding of the discussion and to clear up misunderstandings of the diagnosis and of the steps you will take after the visit.
As the visit is ending, make sure you are clear about what you are expected to do as a result of the appointment. Imagine that you are back home and want to follow-up on the visit: do you have all the information you need and do you understand what the doctor has asked you to do?
If you discussed a medication, did you receive a prescription? If so, do you understand how long to take the drug, how many times a day and at what hours, and what side effects to expect? What about follow-up? Does the doctor want you to return and if so, how soon? Is it OK to check in by phone or to contact her only if you have a problem? If you are not clear about what you should do as a result of the visit or you are not certain you can remember, write down the doctor's instructions or ask the doctor to do so.