Getting to a Diagnosis
Now, you may be wondering how anyone is ever diagnosed with fibromyalgia when there are so many obstacles to a quick and accurate diagnosis. That's why it's so important to choose a doctor you like and trust, someone you believe will do her best to work toward a diagnosis. That takes time and patience, and it helps to know that your physician is in your corner.
Truth is, there's often nothing quick about getting diagnosed with fibromyalgia. Patients often undergo a lot of testing and waiting. In the meantime, you may be dealing with remarkable pain and fatigue while awaiting an answer. Hopefully, though, your doctor will start you on treatment while waiting to confirm your diagnosis.
Even though there are no markers in the blood or images on an X-ray to reveal you have fibromyalgia, your doctor will still need to order tests and examine the findings to rule out other conditions. Here is what you can expect in the process.
Getting an Answer
The diagnostic process usually begins the minute you show up at your doctor's office. It typically starts with a conversation about your current lifestyle, what you do for a living, whether you have children, and why you've come to see the doctor. Your doctor will also inquire about medications and supplements you are taking, whether you exercise regularly, and whether you drink alcohol or smoke cigarettes.
From there, your doctor should begin to ask you about your current symptoms. What exactly are you feeling? When did the pain begin? Was there something that happened to cause your discomfort? What have you tried to relieve your symptoms, if anything?
Be sure to tell your doctor everything, even if it might seem embarrassing at first. For instance, you may not want to discuss your vaginal pain during sex or your frequent trips to the bathroom throughout the day. But such symptoms may be revealing. Vaginal pain may be vulvodynia, and frequent urination may signal irritable bladder, both conditions associated with fibromyalgia.
Unfortunately, doctors are often quick to brand fibromyalgia patients as difficult patients, especially if the doctor is skeptical. You can help lessen that image by being calm, organized, and specific about your symptoms. Also be realistic. Don't expect your doctor to diagnose you immediately. If you sense he isn't taking you seriously, then by all means go elsewhere. But do present yourself credibly and calmly.
In addition to your current problems, your doctor will ask about your medical history as well as that of your family. It's a good idea to ask family members beforehand whether they've experienced similar symptoms or health problems. Again, speak frankly and openly about your family's medical past. A history of depression, while embarrassing to your mother, is nothing your doctor hasn't heard before. Such details can help your doctor determine the source of your problems since many medical conditions have a genetic component.
Your doctor will also want to know what kinds of events have been happening in your life recently. Have you recently been in a car accident? Are you happily married? Have you gone through any major changes in your life, such as moving or switching to a new job? Events that might lead to fibromyalgia include the following:
Grief that has gone on for six months or longer
Injuries related to a car accident
Recent illness or infection
Repetitive movements and misuse of muscles
Other possible culprits include depression — which could be the result of your problems, not a cause — allergies, immobility, overworking, and nutritional deficiencies. Information about recent events in your life may lead to other questions that can reveal stressors that might have triggered your symptoms.
Most experts agree: A good fibromyalgia doctor today now knows well enough to do a digital palpation test, which is an important diagnostic tool specifically for fibromyalgia. Be sure to tell your doctor if the palpation hurts when she applies pressure. Just because a site is uncomfortable does not mean it is truly painful, and it is the presence of pain that defines fibromyalgia.
In order to rule out other medical problems, you will still need to undergo other kinds of testing. For starters, your doctor will probably order a complete blood count. Although fibromyalgia does not reveal itself in blood markers, blood does give you a snapshot of your overall health. Blood tests can also reveal an iron deficiency (anemia) and antibodies that show whether you may have an autoimmune disease. In addition, blood provides information on how well your kidneys and liver are functioning.
Other kinds of tests your doctor orders will depend on your symptoms. These might include, but are not limited to those described in the following sections.
Infectious Disease Tests
If your symptoms resemble those of Lyme disease or another infectious disease, your doctor may subject you to tests for these conditions. For Lyme disease, for instance, you may need the Western blot and ELISA tests.
If your physician thinks hypothyroidism is behind your symptoms, she may ask that the lab check your thyroid hormone levels during your blood test.
X-rays, CAT scans, or MRIs are sometimes ordered if your doctor suspects compression of your spinal cord by a disk or rheumatoid arthritis. These imaging studies can detect damage around the affected joints.
Some people who complain of extreme fatigue may be suffering from sleep apnea. Sleep apnea is serious. If it's severe, it can even be fatal, so diagnosis and treatment of this condition is important.
Why not test for substance P?
Several studies have determined that people with fibromyalgia average three times more substance P in their spinal fluid than healthy people. But it's hardly a conclusive diagnostic tool. Some fibro patients have normal levels, and elevated levels are also present in people who have osteoarthritis and chronic back pain. Getting tested for substance P also isn't easy and requires a spinal tap.
Testing for sleep apnea typically involves an overnight stay at a sleep clinic, where a polysomnography is done to record the number and duration of apnea episodes in a given night. (A polysomnography is a diagnostic test that involves sleeping in a study center where several measurements are taken simultaneously while you sleep, including respiration, eye movement, and brain wave activity.)
Even if it turns out you don't have sleep apnea, a sleep test can help identify whether you are getting the deep restorative sleep that many fibro patients lack. It can help your doctor assess your sleep quality and then prescribe medicines to correct the problem.