Partner With Your Doctor to Improve Your Fibromyalgia Treatment

When you have fibromyalgia, visits to the doctor can be confusing and frustrating as you search for answers and treatment for the many different fibromyalgia symptoms you may have. You may have many different symptoms and lots of questions.  It can be hard to know how to address all your concerns in a short office visit -- or what your doctor needs to know to best treat your condition.

For help with these issues, we turned to Scott Zashin, FACP, FACR, clinical associate professor of medicine at the University of Texas Southwestern Medical School in Dallas; Afton Hassett, PsyD, associate research scientist in the department of anesthesiology at the University of Michigan’s Chronic Pain and Fatigue Research Center in Ann Arbor; and Kris Corleone, a fibromyalgia patient and founder and president of the New York Fibromyalgia Association. Each shared their thoughts on what fibromyalgia patients can do to get the most out of each office visit. Neither Zashin nor Hassett is treating Corleone for her fibromyalgia.

What’s the best way to prepare for a visit to the doctor?

Zashin: Spend some time getting clear on what you want to get out of your appointment.  If you have specific reasons or goals for your upcoming visit, prioritize the top one to three that are most important to you. Examples of questions to ask yourself before going to see your doctor:

• Are you looking for help with a particular symptom?
• How does that symptom affect your life? 
• Does it stop you from doing certain tasks or activities?
• When do your symptoms bother you the most?
• Is there anything that makes it feel better? (Basically, the more specific you can be about your symptoms, the better.)
• Are you unhappy with a medication?
• Is it causing side effects? If so, what are the side effects?
• Is your fibromyalgia medication not helping as much as you'd like?
• Are you hoping to change your medication?

Corleone: Before my visits with the doctor, I think about any questions I have and write them down. Specific questions are generally best. Being open-ended leads to a broad and sometimes less satisfactory answer. I usually do a little research on my own, too. That way, I have some knowledge before I go into the appointment and I can ask educated questions.

I also call ahead to make sure my doctor has copies of any tests I’ve had done at other locations. That way, we can discuss the results at my appointment.

What should you bring to your visit?

Hassett: If it’s your first time seeing a doctor, make a one-page list of the basic information you want your doctor to know about you. This will give your doctor a quick snapshot of your most important information.

Your list should include:

• All medications you’re taking and the dosages.
• Any medication you’ve taken in the past, why you stopped taking it, and your dosing history.
• Other types of treatments or therapies you’ve tried, such as yoga, acupuncture, or massage, and if they helped.
• Your current symptoms and concerns.

If it’s not your first visit, prepare a list that includes any updates from the last visit as well as any current questions or concerns.

Corleone: I keep all of my health information stored in my smart phone, and I bring it along to my appointments. It’s a great way to keep everything I need in one place and my doctor really appreciates it. I’m able to keep a running list of my medications, a list of my symptoms, and anything else that’s important. I can also use it to take notes during the appointment if I need to. I usually ask about the following each time I see my doctor:

• Ask about the results of any recent lab work, and how the results compare to previous test results.
• Ask if any adjustments need to be made to your medications.
• Ask about any specific symptoms you're having and tell the doctor what you're doing to help treat the symptom. Ask if there's anything additional you can do to help treat it.
• Never leave without asking when you should next see the doctor. This way you can make sure to schedule a convenient appointment before leaving the office.
• For those who are newly diagnosed, ask the doctor if they know of any local fibromyalgia support groups.

Is it helpful to bring someone else to the appointment?

Corleone: I’ve found it's very helpful to bring my husband to appointments with me. It’s nice to have his support, and he can help me explain my symptoms to my doctor. Sometimes he’s able to remember things I don’t.

Zashin: A family member or friend can be a great asset at an appointment. A spouse may be able to describe certain symptoms better than you, such as disturbed sleep. It can also be helpful to have that person take notes or ask questions if you forget. If you can’t bring anyone, using a tape recorder can be a good way to record everything your doctor tells you.

How can I improve communication with my doctor?

Zashin: If you have questions in between appointments, don’t hesitate to call the office and ask. Your doctor or another staff member should get back to you in a timely manner. But be sure to leave a number where you can be reached and what time is best to reach you. This will limit the time that you spend playing “phone tag” and help ensure you get a prompt response.

It’s also helpful to try to be as honest with your doctor as possible. If you have a problem or question about your treatment, bring it up with your doctor. And if you feel that he’s not taking your questions or concerns seriously, don’t be afraid to get a second opinion or to look for another doctor.

Hassett: Try to be as brief and clear as possible. For example, when describing a symptom, focus on the facts. Tell your doctor when you first noticed the symptom, what it feels like, what time of day it’s the worst, and what, if anything, makes it feel better. You can even write these things down ahead of time so you remember. Try to avoid telling long stories that don’t focus on your symptoms.

It’s also helpful to keep an open, positive attitude about your treatment. Try not to shrug off your doctor’s advice or suggestions without considering them, even if it sounds like something you’ve tried before. Sometimes just a small shift in a treatment, such as a different dose of medication or a new way of exercising, can make a big difference in your results.

Corleone: It’s good idea to keep a diary or journal so you can keep track of your day-to-day symptoms. That way, you can answer any questions your doctor may have, such as how long the symptom has been happening or what makes it feel better or worse.

I also try to listen carefully to what my doctor tells me, and if I don’t understand something, I ask her to explain. Sometimes, I’ll ask her to write down medical terms so I can do my own research when I get home.

What should patients understand about treating fibromyalgia?

Zashin: It’s important to remember that we’re still learning about this condition, so it’s possible your doctor may not have all the answers. You may have to try a few treatments before you find something that helps. But you’re likely to have a better relationship if your doctor has a good understanding of fibromyalgia and is comfortable treating it.

Hassett: Treating fibromyalgia can sometimes mean a lot of work for the patient. Your doctor may suggest that you lose weight, get exercise, or change sleep patterns. Making these types of lifestyle changes can be difficult, so it’s helpful if you and your doctor set goals together and work closely as a team.

Corleone: As a patient, it’s really important to be your own advocate. Learn all you can about the illness, and find a doctor who is familiar with treating fibromyalgia. Getting the right treatment can be a long process, but with patience and support, it is possible to feel better.