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With a long-term illness, you have a different role with health care providers than is typical for 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 in which you play an active 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. Looking at the relationship from the other side, you should have realistic expectations of your providers.

Since there is so far no cure for either CFS or FM, it is appropriate to focus on treating symptoms to improve your quality of life. Since there are no medical treatments that are consistently helpful for people with CFS and FM, you will probably have to try several to many to find what works for you.

For Dr. Lapp's thoughts on this topic, see his article How Your Doctor Can Help If You Have CFS/ME. Dr. Lapp is director of the Hunter-Hopkins Center in Charlotte, North Carolina, a clinic that specializes in treating CFS and FM.

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. You will need to explain your situation and special needs to all of them.

1. 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.

2. 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. You can get spinal adjustments from chiropractors.

3. 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 can provide support, understanding and inspiration.

Finding a Doctor

You can be forgiven if you are 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 people are often dismissed and their complaints ignored.

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, people with CFS and fibromyalgia 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. Some local chapters of the Arthritis Foundation ( www.arthritis.org/ ) provide physician referrals for FM.

For lists of FM support groups, see the website of ProHealth ( www.prohealth.com/supportgroups/ ) and the site for the National Fibromyalgia Association ( www.fmaware.org/ ). Other resources for finding doctors include the Fibromyalgia Network, the FMS Community website ( www.fmscommunity.org/findingadoctor.htm ).

Visits

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 only a period of time, you and your physicians should agree that treatment will consist of experiments. Some of the experiments may work; some probably won't; and others will work, but only for a while.

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 today, 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.)

Prepare

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.

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 on previous treatments, such as 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 a family member or friend to accompany you.

Be Active

Take an active role in your appointment. Begin the visit by describing briefly your main concerns, as described above. You might say something like, "I came in to talk about improving my sleep. I've been having trouble falling asleep; I wake up several times during the night, and the drug I've been taking doesn't seem to be effective any more."

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. If your insurance doesn't cover all the proposed treatments, make your financial constraints known. If the doctor suggests a medication, ask:

• How and when should I take it, and for how long?
• How soon will the effects appear?
• What are the most common side effects and what should I do about them?
• What are my other options?
• How and when should I report to you about my experience with the drug?

Repeat

To check your understanding, 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.

Take Action

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 you will take the drug, how many times a day and at what hours to take it, and what kind of side effects to expect? What about follow-up?

Does the doctor want you to return? 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.