Few concerns are more urgent among our members, new and old, than to find physicians who treat Fibromyalgia (FM). Especially, how do you get into a physician’s office with FM as your diagnosis without getting promptly turned away?
In response to this need we have devised step-by-step approaches that let you right into doctors’ offices. Follow these steps carefully and you should have little difficulty finding a physician and being an ideal patient.
Is there a medical specialty for FM?
There is not. There may be an occasional primary care doctor who takes an active interest in FM, who does not brush off FM symptoms, and who will make sure you get proper treatment, but they are scarce.
For those of you who are already established in a physician’s practice, ask yourself how well your FM symptoms are being treated. Physicians may minimize FM or brush it off. The brush-off may be done in many ways.
n One way is failure to schedule you for appointments specifically to deal with the many symptoms that FM patients have.
n Or physicians have been known to trivialize and dismiss FM. Example: A physician might dismiss FM by suggesting that you work out at the gym more often.
n Or you may be told that positive thinking will help (as though you didn’t know already).
n Or you are given a referral to a psychiatrist. This last would be appropriate only if part of a total, integrated approach.
We recommend that you do not stay with a physician who minimizes the existence of FM in any of these ways. Without guilt, embarrassment, or hesitation, transfer your care elsewhere. For sure, medicine cannot cure FM; but you want physicians who put forth full efforts on your behalf to bring symptoms into a manageable range.
How physicians view patients with FM
Without doubt, many physicians view new FM patients with misgivings. Most physicians can recall a new FM patient who unloaded a staggering array of problems onto the physician, burst into tears, and asked between sobs, “Can’t somebody please do something to help me?”
Most physicians are able to help – and are willing, provided sufficient time is allotted. Insurance companies reimburse usually for only the first 15 minutes; but an allotment of one or two hours is realistically needed. For this reason, many practices have a strict policy of refusal to see new FM patients.
Therefore, in our approaches to physicians, we will emphasize ways to work with physicians and help ease their tight schedules. Obviously, you do not want to overload the physician with too many problems for the time allotted; and you do not want to burst into tears and ask for help between sobs and Kleenexes.
First, select your medical team
Since no medical discipline exists that encompasses FM, consider a team approach – several medical caregivers to meet your particular needs. Comprehensive care is your goal; it is achieved through a team of caregivers.
We are not going to recommend that you try to get appointments with each member of your team – your PCP will assume responsibility for most referrals. Many specialists, indeed, will not accept new patients without a referral from the PCP. Let us look then at PCPs and what they do, and at other specialists you might be referred to. (See “Who is on Your Medical Team? Roles the Primary Care Physician and Various Specialists Can Play in a Fibromyalgia Patient’s Care,” in this newsletter.)
Do not go to the new physician out of medications, or in desperate need of acute care. If need be, go to acute care centers for FM care until you establish care with the right physician.
Gather leads from any of the following places:
n Your support group, by meeting members and finding out who is taking care of them.
n Friends and neighbors, by asking for the names of physicians who are easy to talk to, who listen and communicate well with their patients.
n Any other physicians you may be seeing.
With your list, sit down and make appointments. It is all right to make appointments with two or three different physicians in blocs a week apart. Then, after you check them all out, you can decide which one you would like to stay with.
Persist. We know of no substitute for working your leads and persisting in your search. If you have a promising lead but can only get an appointment for two or three months from now, take the appointment. In the meantime, work your other leads. If a fellow support group member says that the physician named is not taking new FM patients, write down the name anyway, and proceed as outlined here.
What you tell the receptionist on the telephone
A critical contact with the doctor is the phone call to the receptionist, who can open the door or block it. What do you say to the receptionist?
The first thing to remember about PCPs is that they provide care for a wide range of problems. PCPs who limit their practice to FM are very scarce. If you say you want a doctor who cares for FM, of course they will say “no” to you. You are in effect asking for a Fibro Doctor, someone who specializes in FM.
Tell the receptionist, rather, that you are looking for someone to take care of you as a whole, whatever problems should come up. Tell her that you want to establish care with the new doctor. This implies meeting the doctor so that you both can get to know each other. If the receptionist insists on a specific reason for the office visit, you can name a symptom: Allergies, sinuses, crampy bowels, rash, headache. One or two of these is enough.
What you write on the questionnaire
Usually when you make your first appointment with a physician, you have to fill out a questionnaire with all your medical symptoms. Rather, write down symptoms you would like to be treated for in the near future. Be selective. Don’t write down a catalogue of complaints.
Remember: There are, as yet, no treatments specific for FM – none that are labeled by the FDA with an indication for FM. Fibromyalgia is only treated symptomatically. (This may change in the near future, but the general idea holds true.)
Since FM is treated symptomatically, you can present your symptoms to the doctor, one at a time, for treatment. If you are aware of FM treatments available, you can convey your symptoms and suggest treatments, and often get what you want.
The term “Fibromyalgia” may come up later in your dealings. You can mention then that this diagnosis has been suggested before. By the time it comes up, you will have established a comfort level with the doctor. If Fibromyalgia is a term that the new doctor is comfortable using, this will be the time to discuss it. If the doctor would prefer to deal with “Fibro” as a collection of symptoms, you will sense that too.
But your task at the beginning is to get your bearings without mentioning FM.
What you tell the medical assistant on the first visit
The next person you will likely meet is the one who calls you into the exam room, which is usually a nurse or medical assistant. This professional will take your weight, blood pressure, and pulse, and ask you “What will you be seeing the doctor for today?”
Your answer could be “To establish,” or “To establish a working relationship with the doctor.” The nurse/medical assistant might write “To establish” on the chart, and ask you for specifics. “Are there particular problems you wish to discuss with the doctor today?”
You can answer by mentioning your need for routine blood tests including cholesterol; or answer with another question: “Won’t the doctor be discussing routine testing with me?” Again, you are avoiding “Fibromyalgia” for now.
What you discuss with the doctor
Now that the reason for your visit is firmly set out on the chart, the important matter for the remainder of this visit is how you talk to the doctor. Talk in a business-like manner. Stay on topic, preferably with an agenda, and waste no time getting off-topic.
Without meaning to do so, patients consume 40 to 50 percent of the office visit bringing up (or responding to) unrelated topics. Therefore, practice with a friend to learn to keep on track with an agenda, or bring a friend into the exam room to help you stay on topic.
The physician exam may come first or last; the order doesn’t matter. After a brief exchange of greetings, the doctor may again query you about specific concerns. Return to your agenda: lab tests, mammogram, and a routine evaluation. The doctor may ask a few questions about symptoms or exam findings. It is okay to answer briefly, but don’t elaborate. Your goal is to leave the office promptly with a requisition for your testing and for a follow-up visit.
Your main purpose for this visit is “To establish,” so that you can come back for future visits. If you keep your problem list trimmed at this visit and all visits, you will be doing the doctor a favor by helping keep the schedule on time.
The second office visit
This visit may be tied up with testing results. (If not, proceed to the instructions for the third visit.) At the end of this visit you will probably be instructed to return for an appointment in a year, or “as needed,” or “Call us if you need anything.”
The third office visit
If you do not have a timely follow-up appointment already, simply wait a week from your last visit and call for an appointment. Since you are an established patient, you are not going to be denied an appointment.
Your agenda at this and future visits will be as follows:
n To introduce FM symptoms a few at a time.
n To start asking about treatments such as those listed in the FMFSG Member’s Manual.2
n And to start mentioning possible referrals to specialists who might be able to help you. (See “Who is on Your Medical Team? Roles the Primary Care Physician and Various Specialists Can Play in a Fibromyalgia Patient’s Care,” in this newsletter.)
If you are experiencing high-level pain, it may be very important to mention a pain management specialist, for example.
Remember – make an agenda in advance of your appointment; include only a few things at a time to be covered; stay with your agenda; and act in a businesslike manner (as mentioned above).
Bit by bit, you and your doctor are whittling away at FM symptoms. This approach is successful because FM is almost entirely treated symptomatically. If you are following the communication practices we talked about, you are not a pest to the doctor or a load on the schedule.
Question: What if the doctor suspects Fibromyalgia and brings it up?
Answer: Excellent! Your purpose is to get complete care, and at some point FM will have its turn. By the time it comes up, you will have shown your doctor that you are a good patient, well organized, and not a drain on the busy schedule.
You can say the diagnosis has been considered in the past, but that you needed a physician to check you out. If your new doctor believes it to be FM, that will be your new diagnosis.
Occasionally, despite your efforts at being an exceptionally good patient, the diagnosis of FM will earn you scorn. You may now be treated disrespectfully. Unfortunately, you must continue your search until you find a physician who is more accepting.
Question: What about the old medical records?
Answer: Usually old office records are not particularly needed to manage FM. Places that may have useful records, where FM is not usually a diagnosis of record, are the laboratory, X-ray facilities, hospitals, and specialists. In any event, you would not often be sending for all these records in advance of your first visit. Therefore, no one will be in a position to see the records and say to you, “We do not take new FM patients.”
1. This article is reproduced with permission from the August 2006 issue of the Fibromyalgia Friends Support Group of Nevada Newsletter. For information about the FMFSG, its meetings in the Las Vegas area, and its monthly newsletter, e-mail Founder and Leader Patti Wright at firstname.lastname@example.org or Administrator Christy Noble at email@example.com . 2. This article will be included in FMFSG’s Member’s Manual, a collection of resources for FM patients.
Note: The information provided here is not intended to diagnose, treat, cure, mitigate, or prevent any disease. Consult your physician for medical advice.