Approaching Your Primary Physician

Learning to approach our doctors is a key element in dealing with fibromyalgia. If your physician has diagnosed you by performing the tender point index test, then at least he/she is aware of fibromyalgia and knows how to diagnose it properly. If your physician has just taken your symptoms and assumed that you have fibromyalgia without doing the tender point index test, then it is possible that you may not actually have fibromyalgia. In this case, it may be necessary to change physicians. If this is impossible for a number of reasons, then asking for a referral to a specific rheumatologist or internist, whom you have heard is knowledgeable in fibromyalgia, is the next step. Depending upon where you live, there may be a cost involved in this, but it is worth it in order to receive an accurate diagnosis. Once you've been given an accurate diagnosis, it is important to make each of your subsequent visits worthwhile to you. The standard treatment of Elivail or other antidepressants may not work for everyone, so it may be necessary to try different medications in order to find one that reduces symptoms. Thus, monthly appointments become necessary after an initial diagnosis. Since both your time and your physician's time are important, taking a list of questions helps both parties. Keeping the list to about five questions or concerns helps the physician focus on the main problems that you are currently dealing with on a daily basis. If your physician had done a battery of lab tests and informs you that they are all normal, ask what your results are and what the range of normal is for the lab that performed the tests, and write them down. When medications are changed, keep track of any changes in your pain or fatigue levels. Most medications have side effects, and although not everyone experiences all of the side effects of a particular drug, it is important to document any changes. Some medications, such as antidepressants take time to work, but if after a couple of weeks, you are still groggy in the mornings, not sleeping well, or having side effects which aren't lessening, then it is time to look at something else to raise the serotonin levels in your body. Some physicians are reluctant to prescribe narcotics for pain, but it has been shown that people with chronic pain do not become addicted. As long as the amount of narcotics does not increase over time, then no addiction has occurred. We may become dependant upon narcotics, so it is important to monitor one's use on a daily basis and inform your physician of any need to increase pain medication. Discussing the need for pain control can be very difficult with some physicians. Either they worry about addiction, the loss of their medical license, or have no idea how much physical pain someone with fibromyalgia can have. Just saying that you have pain isn't helpful for either you or the physician. Show him/her where the pain is, and describe a typical day of trying to walk, or do normal activities of daily living. Describe how your sleep is interrupted by pain, and explain all the things that you do to relieve the pain such as warm baths, stretching, or massage in order to show the doctor that you need something stronger than just over-the-counter medications. If a specialist is seen along with a primary physician, usually the specialist will send a report to the primary physician, but it is important for you to check with your primary physician to see if this was done. If not, tell your primary physician of any changes in medication that the specialist made so it can be documented on your chart. If you've decided to see a naturopath or are taking herbs, vitamins, or other suppliments, it is extremely important to inform your primary physician of how much and what you are taking. Combining herbs and medications can be dangerous, and even a naturopath should be made aware of any medications that you are taking on a regular basis. Taking information about medications or suppliments that you've found on the internet, through magazines, or newsletters from a fibromyalgia support group may be helpful for your physician. A general practitioner may not have the time to read current studies being done on fibromyalgia. By taking studies to your physician shows him/her that you are actively seeking ways in which to help yourself rather than just depending upon your physician to manage your care. This is one area where open communication between you and your physician is extremely important. If your symptoms are making it difficult for you to work, and the quality of your life is reduced to working, and then going home to lie down for the rest of the day, then obtaining disability becomes an issue that needs to be addressed. When handing disability forms to your physician, make sure that he/she writes that "you are unable to work at any job at this time." What you write on your forms must match what the physician writes on his/her forms, and the best way to do this is to take both forms and compare them before they are mailed. The best approach is to be present in the room when your physician fills out the forms. It is important to make a specific appointment for this alone due to time factors for your physician. Again, open communication is very important. If you are seeing your physician for something else that is not related to fibromyalgia, or if you are unsure of whether you have a new symptom or not, it is important not to assume that all aches and pain, or even increased fatigue is related to fibromyalgia. Just because you have fibromyalgia doesn't mean that different complaints are related. For example, chest or abdominal pain, or changes in your bowel function may mean that something else is occurring. A good physician will not just assume that these new symptoms are related to fibromyalgia. He/she will order tests, and check you for other conditions or diseases before looking at a new symptom as being related to fibromyalgia. Stress and emotional factors do affect pain and fatigue levels, so it is important to tell your physician of any changes in your life. For example, conflicts with family or friends, the loss of a loved one, or anything that causes emotional distress needs to be talked about with your physician. Do not expect your physician to cure you. There is no cure for fibromyalgia, but the symptoms can be controlled to a certain degree once you've found what things help you. Becoming a functional human being is the main goal, and if it means that changes in your life style need to be made, it is your responsibility to make the changes. Your doctor may make suggestions regarding exercise and reducing stress, but it is your responsibility to inform him/her what seems to help you and what actually makes your symptoms worse. A physician is only a human being who has a medical degree, and we are the consumers of their care. By learning to approach a physician assertively, honestly, and openly, we will not only be treated with respect, but also listened to concerning our needs for pain medication and emotional support.

Dealing with Medical Personnel

Dealing with a chronic illness on a daily basis is a challenge in itself, not to mention adding the additional stress of juggling your medical care.

Every day I have conversations with people from all over the country. They share with me their frustrations in trying to coordinate visits to three or more physicians, therapy, diagnostic and lab tests, and multiple medication changes.

This scenario does not even include trying to balance family issues.

If this story sounds all too familiar, keep in mind you are not alone in this daily struggle! There are ways to stay organized. I would like to offer you some simple tools that could ease your stress and help you make the most out of your doctor appointments.

Stop Me if You’ve Heard This One Before

Let’s see if this scenario sounds familiar.

You have been sitting in a crowded waiting room for a while, and now the hands on the clock show a time well past your scheduled appointment.

After what seems like an eternity, you are finally led to an examining room, where again you wait for an extended period of time.

When the doctor finally arrives, you feel relieved—but the time he spends with you seems far too brief. After all, it has been 3–6 months, or longer, since you last had a visit. You have so much to talk about!

Unfortunately, all the questions you wanted to discuss with the doctor seem to flee away, and you can hardly remember a single one. The discussion goes in a different direction than you had planned.

Later you arrive home with a new prescription, unsure what good it is supposed to do you, and how long it will take for these good things to happen.

Now the questions you had for the doctor filter back into the forefront of your mind.

The whole experience seems like a vicious circle, and leaves you feeling bewildered.

Tips for Patients

First let me say that none of this is meant to criticize physicians, by any stretch of the imagination.

Keep in mind that certain physician specialties—rheumatologists in particular— are in short supply. As a result, your doctors may be dealing with overloaded patient schedules in an attempt to accommodate as many patients in need as they can.

This may mean that visits with your physicians are not as long as you would like. It is all the more important that you make the most out of your visits by being the best patient that you can be!

Keep a Notebook with You for Easy Reference

Every patient under the care of a physician should keep a tablet or notebook handy to jot down questions or concerns that arise between visits with the physician.

Just before a visit, take out your list of issues and prioritize it. Which of these concerns are most important to you?

Number them if necessary, to keep them straight.

On the day of your appointment, take that list with you and keep it in your hands for easy reference. Many patients have a great deal of anxiety related to their doctor’s appointments, making it difficult to keep a clear head. The list will serve as a written point of reference, a cue card if you will.

Be Sure to Set Your Priorities

Depending on the number of questions and concerns you have, please keep in mind it may not be realistic to expect your doctor to address every single one during the brief appointment time you will have together. You must be reasonable in your expectations.

So try to number your priorities. Think about getting answers to the top three to five questions on the list, as a starting point or goal for the visit.

Depending on the types of questions that you ask—obviously if they lend themselves to quick, concrete answers the process will go quicker—you may end up being able to ask additional questions.

However, if your questions are open-ended and do not lend themselves to a simple answer, you may not even get through the first few.

If you do not get through all your questions, please do not see this as a failure. Putting things in perspective, realize that your previous appointments may not have been as effective as this one. Look at the appointment as a victory, and consider other resources to find the answers you want.

Your Nurse Is a Valuable Resource 

Don’t forget your physician’s nurse as a valuable resource for information about your care. Nurses are a key part of your healthcare team. Nurses can give you information that may add to or clarify the discussion you had with your physician. They may also be capable of giving you written instructions or literature to help you to put all the pieces of the puzzle together.

Nurses work hand-in-hand with physicians to provide you with the best possible care. They are an important resource for you. 

Keep Accurate Medical Records 

Another way to make the most of your appointments is to keep accurate medical records.

I realize you may be under the care of multiple physicians. Just trying to keep all of their names straight may be a challenge.

You can organize your physicians’ names, addresses, specialties, and phone numbers, etc., with other pertinent medical information, in a notebook—or better still, in your computer where you can make updates as needed.

Before an appointment you can make copies of your relevant files, such as medications, to share with your physician. 

Create a Document that Covers All the Basics of Your Medical Situation 

Create a basic medical reference document for yourself. This can be a very valuable tool, not only for your own guidance, but also for your family and the medical professionals you deal with.

This document will also serve as your emergency medical information. Make sure to carry a copy in your purse, and that your loved one or caregiver has access to a copy in the event you are not capable of speaking for yourself. Some people choose to keep a copy on the refrigerator so it is easily visible. 

What Information to Put in Your Personal Medical Document 

This will be a completely individualized process, and you should not feel there is a right or wrong way to do it. Please keep in mind that the following is a suggested format. You can tailor this to fit your special needs.

There are also software programs available for the purpose of keeping accurate medical records. Use the search words “software for personal medical history” on your favourite Internet search engine.

You may also find pre-printed books for the same purpose.

Here is my suggested format. 

Your Name, Address, and Phone

Emergency Contacts

Medical Insurances 

Include Primary/Secondary with all necessary account numbers.

Physician List

Be sure to include specialty, address, and phone number.

Medical Conditions

Examples: CREST syndrome, seasonal allergies, asthma, Sjögrens Syndrome.

Medication List

It is imperative that it include the most up-to-date dosages and frequency.

Examples: “Acetaminophen 500 mg, 2 tablets, every 4–6 hours as needed.” Don’t forget to list any over-the-counter vitamins, supplements, or herbal remedies you may be taking. Note: Be sure to discuss all vitamins, supplements, and herbal remedies with your doctor before starting to use them, so he can warn you of any potential interactions with your other medications. You may want to keep a separate list of medications that you have taken in the past but are no longer on, and the reasons they were discontinued.

Example: “Methotrexate was discontinued due to abnormal lab values.”

Allergies

List all allergies to medications, tape, topical preparations such as iodine, and any foods. You should do this in bold red letters so it cannot be missed by anyone on your healthcare team.

Surgeries/ Procedures

Include major surgeries as well as scopes and biopsies.

Laboratory and Diagnostic Testing

You may want to keep a record of when you had your last pulmonary function tests, electrocardiogram, blood work, etc.

Over time, you will find the tools that work the best for your personality type, as well as the personality type of your physician. It may be a trial-and-error process. Remember, there is no single best way to manage a chronic illness. This article is a starting point.

I sincerely hope you have found the suggestions in this article helpful. Please use them as tools to make the most of the time spent with your doctor, and to help you become the best patient you can be!

 

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