Books : The 10 Best Questions for Living with Fibromyalgia : Excerpts

Chapter 1 : The 10 Best Questions

About Your Diagnosis of Fibromyalgia

First the doctor told me the good news: I was going to have a disease named after me.

-- Steve Martin

I hurt all over." That's the cry of an estimated 3 to 15 million Americans who are afflicted with fibromyalgia, a poorly understood chronic pain disorder characterized by widespread aches, stiffness, multiple tender points, fatigue, and sleep disturbances. Other common symptoms include depression, difficulty concentrating, numbness or tingling sensations, heightened sensitivity to light and noise, and anxiety.

Fibromyalgia affects mainly women of all ethnic groups, but it can occur in men and children as well. Due to its often debilitating nature, patients' family members and friends are also affected. Many people with fibromyalgia have difficulty fully functioning in their daily lives, including working and raising children.

Millions of people with fibromyalgia have been misdiagnosed with a dizzying list of other ailments. Many doctors are still unfamiliar or hostile to fibromyalgia as a "real disease." Dr. Kim Dupree Jones, a fibromyalgia expert at the Oregon Health & Science University explains, "The average patient sees five or six doctors over seven to eight years to get an accurate diagnosis. People with this diagnosis can be much maligned. They are often told that it's all in their heads."

Martha Beck, well-known fibromyalgia patient, life coach, and best-selling author, recalls, "My twelve years of being in constant pain also had the awful social ramifi cations of being in constant pain that no one understands. You are told you are a wimp and that you are making it up, that you're lazy, that you're hysterical. That was just hell on wheels."

Confronting a diagnosis like fi bromyalgia can be frightening and confusing.

These following Best Questions are ones you may not think to ask your doctor, along with notes on why they're important and the "best answers." The assumption here is that you've recently been diagnosed with fi bromyalgia and are discussing your case with either a primary care physician or a specialist.

THE QUESTION DOCTOR SAYS:

Don't ever hesitate to ask other questions that are not in this book. There truly are no dumb questions, especially for a diagnosis like fi bromyalgia. Don't be afraid to ask the doctor to repeat anything you don't understand. Be politely insistent about getting answers to your questions. This is your body and you deserve to have a well-educated mind inside of it.

GOOD ADVICE FROM THE PRESIDENT OF THE NATIONAL FIBROMYALGIA ASSOCIATION

Lynne Matallana says, "It's really important that you bring an advocate with you to doctor appointments, especially in the beginning, because many people with fi bromyalgia have 'fi bro fog.' Sometimes it's very diffi cult to remember what the doctor says. Your advocate can ask questions and take notes for you."

The 10 Best Questions About Your Diagnosis of Fibromyalgia

1. How do you know for sure that I have fibromyalgia?

This question may be the most important question you ever ask in your life.

Many people never think to ask this question. They are too shocked, confused, or relieved to finally have a label for their mysterious ailments. But fibromyalgia is a complex illness without a definitive diagnostic test, as compared to reading a mammogram or analyzing a laboratory blood sample.

In order to be diagnosed with fibromyalgia, a patient must meet two criteria: 1) three or more consecutive months of pain occurring above and below the waistline and on the left and right side of the body (chronic widespread pain); and 2) significant tenderness in at least eleven of the eighteen tender points on light palpation (defined as 4 kilograms of pressure). See the tender point diagram at the National Fibromyalgia Association's Web site: http://www.fmaware.org/site/News2?page=NewsArticle&id=6263.

The tender point exam is the only diagnostic test for fibromyalgia and is considered to be 80 percent accurate. It was formally established by the American College of Rheumatology (ACR) in 1990. But doctors' skills vary in how much pressure they apply during the test and how to interpret the results. This is especially true of doctors who are unfamiliar with or hostile to fibromyalgia.

Keep in mind that fibromyalgia diagnoses are wrong 20 percent of the time. Many of the symptoms of fibromyalgia mimic those of other diseases, such as hypothyroidism, polymyalgia rheumatica, neuropathies, lupus, multiple sclerosis, and rheumatoid arthritis. Make sure you've had all the appropriate tests and examinations to rule out other possible disorders. With fi bromyalgia as the newest medical buzzword, your doctor may be tempted to label you too quickly. Similarly, some doctors misdiagnose lesser known types of dementia as the high profi le Alzheimer's disease.

Remember that you aren't challenging your doctor's wisdom or credentials. A good doctor welcomes questions and believes you have every right to know as much as possible about your fibromyalgia .

As fi bromyalgia expert Dr. Michael McNett says, "Easily half of the doctors out there don't believe that fi bromyalgia exists. The patient should learn what the ACR criteria are. That's the answer. Be educated about the eighteen tender point spots around your body." The bottom line is, don't jump on the "fi bromyalgia train" unless you really have a ticket.

THE QUESTION DOCTOR SAYS:

Be sure to phrase this question, "How sure..." rather than "Are you sure...." When you ask a yes/no question like "Are you sure?" you won't get as much information from your doctor as you will when you phrase it in a more open-ended way, like "How sure...?"

2. What caused my fi bromyalgia? What is my prognosis?

In reality, your doctor is not likely to know the answers, but it's only human nature to ask these questions. No one really understands yet what causes fi bromyalgia. Theories range widely from trauma-induced causes to chemical imbalances and autoimmune functions.

Your prognosis is your long-term health outlook. Fibromyalgia is not a terminal illness (you won't die from it), but it is chronic (there is no known cure). The intensity of your symptoms may vary, but they probably will never disappear. Many people live full lives with their fibromyalgia in remission for long stretches of time.

Fibromyalgia sufferer, Rosie Hamlin, songwriter and the lead singer of the 1960s hit song, "Angel Baby," recalls, "My doctor told me that I wasn't going to die from my fibromyalgia, even though I thought I was."

A good follow-up question is, "Are my children, siblings, and other blood relatives at risk for fibromyalgia?" While most people with fibromyalgia don't have relatives with it, there is a genetic component that researchers are just now starting to untangle.

3. What are my best treatment options?

Currently, there are several prescription medications for pain management, more drugs for sleep disorders, and other drugs for related symptoms, like irritable bowel syndrome. See chapter 8 for a comprehensive discussion on medications.

In the absence of any surefire medication, you are wise to work with your doctor to develop a multifaceted treatment plan. As chapter 9 explains, there are many treatments broadly called complementary and alternative medicine (CAM) that may help you. Two of the most common CAM treatments, massage therapy and acupuncture, are discussed in chapters 12 and 13.

Most fibromyalgia patients benefit from sleep management therapies. See more in chapter 14.

4. What lifestyle changes can I make that will help my overall health and comfort?

Making a lifestyle change means modifying or eliminating longheld habits in order to adopt and maintain new healthier habits. Your doctor will most likely address weight management, diet, and physical activity or exercise.

To improve your diet and weight, ask yourself the Best Questions in chapter 16. There are also practical Best Questions to ask your doctor about weight management in chapter 6.

A regular program of gentle exercise will help you to maintain muscle tone, reduce pain, and manage flare-ups. See more advice in chapters 17 and 18 on exercise and finding a great gym and personal trainer to help you meet your fitness goals.

Adopting healthy lifestyle changes is a very sensible approach for managing fibromyalgia. A healthy lifestyle can also literally save your life by preventing a heart attack, stroke, or the onset of Type 2 diabetes.

5. What can I do to avoid flare-ups? How can I manage my depression, anxiety, and/or stress?

Triggers for fibromyalgia flare-ups vary widely and often can't be anticipated. Many people do find, however, that it helps to systematically avoid certain circumstances, foods, smoking, or stressors, and to find relief for their sleep disturbances.

Negative emotions can be a heavy (but understandable) burden for many fibromyalgia patients. This is especially true if you've spent months or years getting an accurate diagnosis, living with severe pain, and having little or no support from your loved ones.

Your doctor may prescribe medications for you or suggest various CAM therapies. To proactively take charge of your health, see the Best Questions in chapter 19 on emotions, on better relationships with your partner (chapter 20), on intimate relations (chapter 21), with children (chapter 22), and with other people (chapter 23).

Don't hesitate to seek professional help. Chapters 2, 3, and 4 can help you find a competent psychologist or counselor.

6. What can I do about my fibro fog?

Fibro fog or brain fog is a common symptom of fibromyalgia. Patients experience cognitive dysfunction, such as impaired concentration, memory problems, inability to multitask, diminished attention span and mental speed, and related depression, anxiety, and disturbed sleep symptoms. Hearing from your doctor about medications or lifestyle changes to fight fibro fog will help you get over thinking you are losing your mind or intelligence.

Don't downplay or overlook your fibro fog. Dr. Patrick Wood, a fibromyalgia expert in Seattle, says, "I have so many patients tell me, 'I can live with the pain. The fatigue is hard. But the worst thing about fibromyalgia is that I can't think straight. I can't make a living.'"

7. What other medical conditions do I have or could I develop that should be treated or monitored?

This question covers two scenarios: 1) overlapping conditions with fibromyalgia, and 2) other illnesses you may have or develop independent of fibromyalgia. Overlapping conditions include myofascial pain syndrome (chronic muscle pain), temporomandibular joint jaw pain (TMJ), irritable bowel syndrome (IBS), chronic fatigue syndrome (CFS), painful menstrual periods called endometriosis, and depression. Assuming your doctor is knowledgeable about fibromyalgia and has done a complete medical history and exam on you, ask how your other ailments might be related to fibromyalgia and about appropriate treatments.

In the second scenario, both you and your doctor should stay alert to any existing, new, or potential non-fibromyalgia diseases. For example, don't let your fibromyalgia overshadow the diagnosis and treatment of heart disease, diabetes, or allergies. See more in chapter 6 on wellness checkups.

8. What advice do you have for me about my ability to continue working? For applying for disability assistance?

Your fibromyalgia symptoms may be preventing you from performing well on the job or being there at all. If this is true for you, make sure you tell your doctor and ask for her advice and medical assistance. Your financial future and quality of life are at risk.

Likewise, if you face possible disability, you'll first need the medical facts from your doctor. Getting disability assistance from the Social Security Administration is not easy and often takes a great deal of time and perseverance. This is a potentially complex discussion that you may need to have several times with your doctor. Get more details on disability at the National Fibromyalgia Association's Web site, www.fmaware.org/site/PageServer?pagename=topics_disability.

9. What advice do you have for me about pregnancy and/or menopause?

You may not have considered how pregnancy or menopause could affect your fibromyalgia. The interaction of fibromyalgia and hormones is only beginning to be understood. But researchers have found correlations between fibromyalgia and pregnancy complications, reduced fertility, and troublesome menopausal symptoms.

Some women experience a drop-off in fibromyalgia symptoms during pregnancy, while others suffer more. Pregnancy is possible with fibromyalgia, but symptom management may require a little extra help and advice from your doctor.

Likewise, fi bromyalgia patients' response to menopause also varies widely. Discuss your personal situation with your doctor, such as breastfeeding concerns after pregnancy or taking hormone replacement therapy (HRT) after menopause.

10. What symptoms are serious enough that I should call you? How often should I see you on a regular basis?

Asking these questions now just makes good sense so you'll know when and how frequently to contact your doctor.

If you are contemplating seeing a specialist, ask either: "Where do you recommend that I be treated?" or "Do you have a fibromyalgia specialist you can refer me to?" See chapter 2 on referrals .

THE QUESTION DOCTOR SAYS:

Take a recording device to your appointments and ask your doctor's permission to record his answers. There will be a lot of new information coming at you. Good doctors won't mind and will actually appreciate your desire to be an active player in your health care.

The Magic Question

What is the most hopeful thing you can tell me about my diagnosis?

Try to think of your diagnosis as more hopeful than helpless. At least you may feel relieved to fi nally know your symptoms have a name and there are millions of other sufferers. You and your invisible illness have been vindicated. You aren't crazy after all.

As fibromyalgia expert and patient advocate, Devin J. Starlanyl, says, "Validation is a very important issue because this is an invisible illness. People with fibromyalgia often don't get the support they need because a lot of people, including physicians, think it's all in the mind."

Fibromyalgia as a medical disorder has finally gained respect and interest. This means there are now megadollars for research on fibromyalgia drugs, therapies, origins, and understanding its causes and potential cure. Ideally, researchers will soon find new ways to precisely tailor highly individualized treatment plans.

So, ask your doctor for your good news, too. What's the best outcome you've seen in cases like mine? It will help to put things into perspective. You deserve some good news today, too.

Conclusion

There is nothing more comforting or empowering than being a well-informed patient. Being an empowered patient means you are involved as an active player along with your doctors in understanding and treating your fibromyalgia. Get the good habits of a healthy lifestyle and a questioning mind now in your battle against fibromyalgia.

The 10 Best Resources

American College of Rheumatology. "Fibromyalgia." http://www.rheumatology.org/public/factsheets_original/fibromya_new.asp.

FibroCenter. "How Your Health Care Professional Diagnoses Fibromyalgia." www.fibrocenter.com/images/FM_Diagnosing.pdf.

Fibromyalgia Information Foundation. "Home." www.myalgia.com/index.html.

Fibromyalgia Network. "Symptoms." http://fmnetnews.com/basics-symptoms.php.

Matallana, Lynne, and Laurence A. Bradley. The Complete Idiot's Guide to Fibromyalgia, 2nd ed. New York: Penguin Group, 2009.

Mayo Clinic. "Fibromyalgia Symptoms or Not? Understand the Fibromyalgia Diagnosis Process." www.mayoclinic.com/health/fibromyalgia-symptoms/AR00054.

National Fibromyalgia Association. "Diagnosis." www.fmaware.org/site/PageServer?pagename=topics_diagnosis.

National Institute of Arthritis and Musculoskeletal and Skin Diseases. "Fibromyalgia: Questions and Answers About Fibromyalgia." www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp.

Ostalecki, Sharon. Fibromyalgia: The Complete Guide from Medical Experts and Patients. Boston: Jones and Bartlett Publishers, 2007.

Trock, David H., and Frances Chamberlain. Healing Fibromyalgia. Hoboken, NJ: John Wiley & Sons, 2007.