Ella had never been diagnosed with fibromyalgia, but lately, she was beginning to wonder if she might have it. She couldn’t sit for more than 10 minutes without suffering pain somewhere, usually in her lower back, shoulders, or neck. Walking brought on knee and heel pain, and sleep was becoming progressively more difficult. Her headaches were getting more frequent, and as a result of her symptoms, she was becoming less active than she used to be.
Ella was right to be concerned, as chronic pain of any type can be debilitating. If not treated properly, it can lead to other health problems down the road, as well as anxiety and depression and a gradually diminishing quality of life.
But Ella should also be careful not to jump to conclusions. Some studies have found that many people are misdiagnosed with fibromyalgia when their symptoms may be caused by something else. In 2003, for example, researchers found that the diagnosis of fibromyalgia (FM) was ultimately correct in only 34 percent of patients. That means the rest of the patients didn’t really have fibromyalgia—they had something else causing their symptoms.
“There is a disturbing inaccuracy, mostly observed to be overdiagnosis, in the diagnosis of FM by referring physicians,” the researchers wrote. They advised doctors to consider other possibilities when addressing musculoskeletal pain.
How can you tell if you have fibromyalgia, or if your doctor has made the correct diagnosis? We give you a few key things to look for.
What is Fibromyalgia?
Though most of us know that fibromyalgia refers to chronic pain of some sort, it’s easy to get confused about what it is, exactly. According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), it is a “long-lasting or chronic disorder that causes muscle pain and fatigue (feeling tired).”
Looking at that definition, it’s no wonder that people can get confused, as that definition could apply to many conditions that cause pain and fatigue. So we look at the common symptoms to narrow it down a bit. These include:
- Widespread pain and tenderness throughout the body
- Muscle aches and stiffness, particularly in the morning
- Trouble sleeping
- Fatigue, even after sleeping for a long time
- Tingling or numbness in the hands and feet
- Brain fog (problems with thinking and alertness)
- Painful menstrual periods
You can look at these symptoms and ask yourself if you’re experiencing them, and that may help you to narrow down what may be causing your trouble—but again, having these symptoms doesn’t mean you have fibromyalgia. There are other conditions that can cause these symptoms, too.
You can also look at who typically gets the disease. The NIAMS says it occurs more often in women than in men, and usually starts in middle age. It tends to run in families, and likes to “pair up” with other diseases like rheumatoid arthritis, spinal arthritis, and lupus. It may also co-exist with things like irritable bowel syndrome (IBS), migraine and other headaches, painful bladder syndrome, and jaw joint disorders.
As far as what causes fibromyalgia, doctors still aren’t sure. In addition to having a genetic component, it may be triggered by an infection, physical trauma (like a car accident), emotional trauma, or by other diseases. But sometimes it can just show up on its own.
So far, we have no cure for it, but there are several treatments available that can help reduce symptoms and improve quality of life.
How Doctors Diagnose Fibromyalgia
As you can see from the above, fibromyalgia shares symptoms with many other conditions, so it can be difficult to determine if a patient has it. The question becomes: How does a doctor make a diagnosis?
Unfortunately, there is no blood test or other type of screening that can determine for sure whether you have the condition. Doctors have to examine all the evidence and then make a diagnosis based on certain criteria.
The guidelines have changed over the past several years. The original criteria for fibromyalgia came out in 1990, and involved testing for tenderness in 18 points of the body (or 9 pairs of points). The results helped determine if a patient was, indeed, “hurting all over.” The points included the following:
- the inside of the forearms, near the elbows
- the back of the neck
- the front of the neck, near the collarbone
- the buttocks, where the muscles curve to join the thighs
- the lower back, usually just at the top of the buttocks
- the inside of the knee pads
- the upper back, where it connects to the shoulder blades
- the shoulders, usually halfway between the edge of the shoulder and the bottom of the neck
- the chest, on either side of the sternum
Doctors would press on each of these points, to see if they were tender. If a patient experienced pain in at least 11 of the points, it was considered a sign that they may have fibromyalgia. Unfortunately, this test led to many misdiagnoses for fibromyalgia, as patients could test positive in 11 or more of the tender points, but still have pain caused by a different condition.
The criteria changed in 2011, allowing doctors to obtain patient questionnaires about these 18 points rather than actually testing the points themselves. That led to even more misdiagnoses, though, because it relied on patients’ subjective opinions about their pain and where it was located.
The new criteria also guided physicians to look for other conditions that commonly accompany fibromyalgia, including depression, IBS, headaches, and fatigue, and noted that the pain needed to be chronic, lasting several months at least, and not explained by any other condition.
In 2016, the American College of Rheumatology updated the criteria again, stating that fibromyalgia may be diagnosed in adults when the following criteria are met:
- Generalized pain, defined as pain in at least 4 of 5 regions, is present.
- Widespread pain must be at a specific severity as measured on designated scales.
- Symptoms have been present at a similar level for at least 3 months.
- Symptoms are accompanied by other issues like fatigue (even after sleeping for a long time) and brain fog.
- No other condition explains the pain and the other symptoms.
Though these criteria give doctors a good guideline, they may still result in some misdiagnoses. That means patients have to be aware of the difficulty, and take steps to make sure they get the right answers.
Other illnesses or diseases that may cause symptoms like those associated with fibromyalgia (or that are said to “mimic” fibromyalgia) include:
- Myofascial pain syndrome
- Lyme disease
- Multiple sclerosis (MS)
- Chronic fatigue syndrome
- Polymyaglia rheumatica
- Interstitial cystitis
- Restless leg syndrome
Any of these conditions may occur simultaneously with fibroymyalgia, as well.
7 Steps to Take to be Sure You Get the Right Fibromyalgia Diagnosis
Fibromyalgia is commonly treated with medications, physical therapy, counseling, and other therapies that address the symptoms. If you don’t have fibromyalgia, though, these treatments are unlikely to help you, or may not help you as much as other treatments would.
That means you need to partner up with your doctor to determine what’s really going on. To do that, become as informed about fibromyalgia as you can, and then take the following steps:
- Keep a symptom diary.
For at least two weeks, keep a diary of your symptoms, and include all the details you can. When did the symptom occur, where in your body did you feel it, how bad was it (rate your pain on a scale from one to 10), and what were you doing before it happened? Include what foods you ate, what beverages you drank, whether or not you were active, and how much sleep you got. Add in your experiences with fatigue, brain fog, and waking up tired.
Watch out, too, for events that seem to make your symptoms worse. When are you more likely to suffer from more symptoms? After a stressful day at work? After a confrontation with a friend or loved one? When the weather changes? During a menstrual period? After eating a large meal?
Then write down when you feel better. What are you doing when you’re less likely to notice your symptoms? How does exercise affect you? What type of exercise seems to help, and what type makes things worse? Maybe walking helps, but running doesn’t, for example.
The more you can share with your doctor, the better he can determine what your symptoms mean.
- Zero in on your pain.
Fibromyalgia causes a specific type of “all-over” pain, but anytime you experience pain, it may actually feel like it’s all over when it’s really not. That means you need to get as specific about your pain as you can.
In your diary above, try to focus on exactly where the pain is happening. Write down what part of the body feels tender, and consider writing down what parts feel okay. If you’re feeling pain in your shoulders and upper back, but your legs are okay, make a note of that. Each day that you record your symptoms, take a minute to determine exactly what type of pain you’re having, and where it’s occurring.
Then record how long the pain lasts. Does it start in the morning or keep you up all night? Does it last for a few hours and then go away? Does it ease up as you go through your day or get worse by dinnertime?
- Get obsessed about your sleep and fatigue.
Fatigue and waking up tired are two other things doctors strongly consider when making a fibromyalgia diagnosis, so it’s critical that you determine exactly what happens when you shut your eyes. In your diary above, write down how you feel in the morning. Are you tired or refreshed? Write down when you went to bed, and when you got up, and how long it took you to fall asleep.
In the meantime, try to improve your sleep habits. Get up and go to bed at the same time, even on weekends, keep your room clean and dark, and avoid using any computers, smartphones, or tablets at least two hours before bed (they emit blue light that can keep you up). Do something relaxing before you retire, like taking a warm bath or reading, and avoid alcohol or caffeine for at least four hours before bedtime. Make sure you have a supportive, quality mattress, too—an old, saggy one can really mess up your sleep.
These steps can help improve your sleep even if you do have fibromyalgia, and if you don’t, they may help you to diminish your fatigue overall. Either way, record your experiences and share them with your doctor.
- Write down other possible conditions that could be causing your symptoms.
In the beginning, it’s best to keep an open mind. What other conditions may be causing your symptoms? Examine your family’s medical history. Is there arthritis or lupus in the family that could be affecting you? (Note if anyone in the family has been diagnosed with fibromyalgia.) Have you had your thyroid function checked recently? Is it possible you could have contracted Lyme disease?
How is your diet and lifestyle? Are you taking good care of yourself, or have you been neglecting things like daily exercise and good sleep habits (which could cause muscle and joint pain)? Take full stock of your health right now and write down your observations.
- Observe what’s going on in your world, emotionally.
Since emotional traumas and mental disorders can create symptoms similar to fibromyalgia—or even bring about fibromyalgia—it’s important to examine this side of your health, too. Have you gone through a difficult emotional experience recently, such as a divorce, death in the family, or abuse? Were you the victim of a violent crime, or are you suffering from post-traumatic stress disorder?
You may still have fibromyalgia, but it could be that the event caused other issues, too. Consider talking to a counselor about your symptoms to get a better overall viewpoint of what may be going on.
- Ask to talk to a rheumatologist.
A family physician or even a chiropractor may diagnose fibromyalgia, but before you take their word for it, see a rheumatologist, too. Rheumatologists are doctors with additional training in rheumatic diseases like arthritis and fibromyalgia, so they are likely to have more experience in diagnosing the condition.
- Be patient and willing to undergo testing.
When you go to your doctor armed with the above information, you will be more likely to come up with the right diagnosis. Be prepared, however, to undergo some tests. In fact, if your doctor doesn’t recommend tests, you may want to, just to rule out any other potential conditions.
Doctors may order the following tests to look for other possible causes of your symptoms:
- Blood tests
- Urine tests
- Electromyography (EMG) (to evaluate electrical activity in the muscles)
How Do You Feel After Three Months of Treatment?
If you do get a diagnosis of fibromyalgia, follow your doctor’s instructions for treatment, and see if they help. Remember that even if you get a diagnosis, it could be the wrong one. Only you can tell for sure if the treatments are helping you. Consider keeping your diary for a little longer, to record your symptoms and any improvements you may experience.
If after three months you’re not feeling any better, ask your doctor for more help, or consider asking for a second opinion. Realize that it may take time to figure out what may be going on, and sometimes it’s a combination of things. You are your own best advocate when it comes to your health. Put on your detective hat, record your responses, and eventually you will find ways to improve your quality of life.
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Donna Gregory Burch, “Fibromyalgia Expert Says Misdiagnosis is Rampant,” Fibromyalgia, February 2, 2017, http://nationalpainreport.com/fibromyalgia-expert-says-misdiagnosis-is-rampant-8832803.html.
Fitzcharles MA, Boulos P, “Inaccuracy in the diagnosis of fibromyalgia syndrome: analysis of referrals,” Rheumatology (Oxford), February 2003; 42(2):263-7, https://www.ncbi.nlm.nih.gov/pubmed/12595620.
Mayo Clinic Staff, “Fibromyalgia: Understand the diagnosis process,” Mayo Clinic, August 19, 2017, http://www.mayoclinic.org/diseases-conditions/fibromyalgia/in-depth/fibromyalgia-symptoms/art-20045401.
Frederick Wolfe, et al., “2016 Revisions to the 2010/2011 fibromyalgia diagnostic criteria,” Seminars in Arthritis and Rheumatism, December 2016; 46(3):319-329, http://www.sciencedirect.com/science/article/pii/S0049017216302086.