FACED with the challenges fibromyalgia syndrome (FMS) brings, families often feel isolated and overwhelmed. In order to manage life with fibromyalgia, patients and caring family members need support, training, information, and an occasional sympathetic ear.

Medically trained professionals can help fulfill these needs. But unfortunately, finding a doctor or other healthcare professional with whom patients and their families can comfortably communicate is not always easy. Some medical professionals are ignorant of fibromyalgia. Others are unwilling to diagnose it since FMS can't be clinically proven without a doubt. Still others disregard the symptoms, suggesting that they merely are a creation of the patient's mind. Encounters with healthcare providers under these conditions can make it difficult for patients and their families to trust the healthcare system.

It takes time and effort (and even a bit of luck) to find the right healthcare provider. The first step is finding a healthcare provider with whom you feel comfortable talking ¹. If you are diagnosed with fibromyalgia or care about someone with FMS, the suggestions below can help you find a healthcare professional who meets your needs.

Decide What You Are Looking For in a Healthcare Provider

A good first step is to make a list of qualities that are important to you, noting which qualities are essential and which qualities are nice, but not as important.

For example, one essential quality in a healthcare provider is a willingness to be in partnership with the patient and family. Sharing this kind of relationship allows the patient, family, and healthcare provider to work together to solve medical problems and manage fibromyalgia symptoms.

Identify Several Possible Healthcare Providers

After you have a general sense of the qualities you are looking for, ask others with fibromyalgia and their well spouses or partners, fibromyalgia support group leaders in your community, and other healthcare professionals for the names of doctors with whom they have had good experiences. You can also obtain a "Health Care Referral Sheet" filled with a list of doctors who treat FMS from the Fibromyalgia Network ².

What Are the Doctor's Office Policies?

Once you have collected a list of potential doctors, call or visit each doctor's office to make a few inquiries ³:

• Is the doctor accepting new patients?
• How many fibromyalgia patients does the doctor treat?
• How far in advance do appointments have to be made?
• What is the average length of time for each visit?
• In case of emergency, how fast can a patient see the doctor?
• What are the payment procedures?

Pay attention to the office staff. You will have to interact with them often.

Questions to Ask the Doctor

When you find a doctor that appears to have the qualities your loved one and you want, make an appointment for an interview. Be sure enough time is allotted in the appointment so you don't feel rushed while talking with the doctor.

Bring a list of questions to the appointment and take notes. Family members (or someone the patient can rely on for support) should feel welcome to participate in the interview, since they may be asked to accompany the patient to future visits.

During the interview, be concise and stick to the point. Ask questions that will help build your trust in the doctor. Here are some suggestions of what to ask:

• What are your views on fibromyalgia treatment?
• How do you feel about involving family members in healthcare decisions?
• Are you comfortable being on a first name basis?

Make A Choice

After you and your loved one have selected a doctor you both feel comfortable with, make a medical appointment. This visit may include taking the patient's medical history and a physical examination.

Getting ready for the doctor's visit.

• Be prepared. Before your visit, be sure to organize your loved one's medical records and list of ALL current medications taken (including non-prescription drugs, vitamins, etcetera). Include with the patient's medical records a list of former doctors' names and addresses ⁴. Make sure your loved one takes this information to the appointment.

• Consider accompanying the fibromyalgia patient. A great way to increase your knowledge of fibromyalgia is to accompany your loved one to medical appointments. Involvement of a significant other, relative, or friend, shows commitment that is much appreciated ⁵. If your loved one appears to feel shaky or upset about his or her health, offer to drive the patient to an appointment, listen to and remember what the doctor tells the patient, and help comprehend the information ⁶.

• Plan to update the doctor. Make a list of concerns your loved one and you want to discuss. For example, do you want to tell the doctor about your loved one's increased trouble sleeping? Mention any changes in energy level, sleep, appetite or pain you've observed in your loved one. Also tell the doctor about any recent changes in the medication your loved one takes or the effect it has had on the person. ⁷

If you haven't had an opportunity to interview the doctor, take time during this visit to ask any questions you have about the doctor and his or her practice. Remind your loved one to share medical history such as illnesses he or she may have had, medical conditions that run in your family, and other doctors your loved one has seen. Be open and honest with the doctor about your family's lifestyle and habits. It will help the doctor better understand your loved one's fibromyalgia and recommend appropriate treatment choices.

After the appointment, decide with your loved one whether this doctor is a person with whom you both could work well. If your loved one and you are not satisfied, schedule a visit with one of your other candidates. ⁸

Summary

• Decide what you are looking for
• Identify several possible healthcare providers
• Consult current patients, fibromyalgia support group leaders, and colleagues
• Learn about the doctors you are considering
• Make a choice

2. The "Health Care Referral Sheet" is available free from Fibromyalgia Network, phone: (800) 853-2929. The referral sheet can also be ordered online from Fibromyalgia Network's website: <https://secure.proroom.com/fmnet/web_store/web_store.cgi>. (Return to text)

3. National Institute on Aging, "Talking With Your Doctor." (Return to text)

4. National Institute on Aging, "Talking With Your Doctor." (Return to text)

5. MJ Pellegrino, The Fibromyalgia Supporter, (Columbus, Ohio: Anadem Publishing, 1997). (Return to text)

6. ME Williamson, Fibromyalgia: A Comprehensive Approach, (New York: Walker and Company, 1996). (Return to text)

7. National Institute on Aging, "Talking With Your Doctor: A Guide for Older People," 1994, <http://www.nih.gov/health/chip/nia/talking/talkthree.htm> (09 July 1999). (Return to text)

8. National Institute on Aging, "Talking With Your Doctor: A Guide for Older People," 1994, http://www.nih.gov/health/chip/nia/talking/talktwo.htm> (09 July 1999). (Return to text)