Chronic pain, exhaustion, stiffness, insomnia and memory problems are all symptoms of fibromyalgia. But they’re also hallmarks of several other illnesses, making a firm fibromyalgia diagnosis a challenge for patients and medical professionals. How can you better pinpoint the symptoms of fibromyalgia? Read on for patient stories and expert opinion.
Jenni Prokopy was 25 when her fast-paced life was pulled up short. That’s when a strange, puzzling array of symptoms – general pain, fatigue, headaches, nausea, dizziness and brain fog – overtook the Chicago resident.
“All these weird symptoms didn’t seem to be connected at the time,” says Prokopy, now 38. “I was high-energy before, and could easily stay up late. But it quickly became obvious that something wasn’t right.”
That something – fibromyalgia – wasn’t immediately obvious to her doctors either, who took about a year to label the illness.
“It took me a while to get a fibromyalgia diagnosis, to get to acceptance and find the right doctors,” says Prokopy, who started the website ChronicBabe.com to share her experience with others.
Like Prokopy, many of the 10 million Americans affected by the incurable disorder don’t arrive at a diagnosis for months or years.
That’s because fibromyalgia is a diagnosis of exclusion, meaning other illnesses first must be ruled out because no laboratory tests can identify it.
Compounding the misdiagnosis problem, fibromyalgia, which is characterized by chronic pain and tenderness, is rarely experienced by patients in the same way, according to the National Fibromyalgia Association (NFA).
“We see so many patients who come in with multiple diagnoses,” says Kent Holtorf, M.D., a fibromyalgia specialist with practices on both U.S. coasts. “They get sent from specialist to specialist, and are often told it’s in their heads.”
While some medical professionals still are skeptical, symptoms of fibromyalgia were legitimized in 1987 when an article in the Journal of the American Medical Association described the disorder. Three years later, the American College of Rheumatology established the first criteria for a fibromyalgia diagnosis, which strikes 20 women for every one man.
How can you tell whether you have a few random aches and pains or legitimate symptoms of fibromyalgia? Here are seven conditions with similar or overlapping signs and ways to tell the difference.
1. Chronic fatigue syndrome
Fibromyalgia and chronic fatigue syndrome (CFS) share many traits, especially a pervasive sense of weariness that isn’t relieved by any amount of rest or sleep.
Doctors believe both disorders stem from an inflammation of the central nervous system, though the exact cause of each isn’t known. As with fibromyalgia, most CFS patients are women, according to the National Institutes of Health (NIH).
“Fibromyalgia, like CFS, is considered to be a wastebasket diagnosis,” says Holtorf, adding that doctors who know something is wrong but don’t know the cause may diagnose fibromyalgia.
Fibromyalgia can trigger other illnesses too; for example, depression or more frequent infections, says Holtorf.
Both conditions can be triggered by major physical or psychological stress, which can affect sleep and lower immunity, leaving patients vulnerable to infections, Holtorf explains.
But symptoms of fibromyalgia are distinct from those of CFS in one major way: Fibromyalgia patients have severe pain in all four quadrants of the body and in at least 11 of 18 “tender points” – spots that are extremely sensitive when mild pressure is applied.
Some CFS patients report tender points, but pain tends to be a less prominent symptom, Holtorf says.
2. Lupus
A degenerative autoimmune disorder that can shorten lifespan, lupus often begins with joint pains. That can be confused with one of the main symptoms of fibromyalgia: muscle aches. Also making diagnosis harder: Some people with lupus also develop fibromyalgia, according to the NFA.
But lupus sufferers usually have many disparate symptoms too, including a rash on the cheeks and nose. And unlike fibromyalgia, lupus can be definitively diagnosed with urine and blood tests, which indicate high levels of antibodies specific to the condition.
Doctors initially thought lupus might be the cause of Virginia resident Becky Halstead’s mysterious symptoms, which began with pulsating pressure behind her knees and continued for eight years before being correctly diagnosed.
“They took blood and did neurological tests,” says Halstead, 52, a decorated U.S. Army brigadier general who commanded thousands of troops in Iraq and Afghanistan before fibromyalgia forced her to retire. “We were just all over the map [in diagnoses].”
But blood tests ruled out lupus and later a rheumatologist diagnosed Halstead with fibromyalgia. Another tell-tale sign – pain – also was distinct from lupus.
“I had 12 or 13 of the tender points,” Halstead says. “For [the rheumatologist], it was textbook.”
3. Rheumatoid arthritis
Another autoimmune disease, rheumatoid arthritis (RA), is tough to diagnose in its early stages because it mimics several other conditions, including fibromyalgia, according to the Mayo Clinic. It typically affects small joints in hands and feet and eventually causes bone erosion and deformity. People with RA often experience morning stiffness and joint pain.
Because some fibromyalgia sufferers have similar symptoms after waking and can’t tell if the pain originates in joints or muscles, symptoms of fibromyalgia are often mistaken for RA. And both conditions, which are more common in women, can trigger profound fatigue.
But lab work can help distinguish between the two disorders. To accurately diagnose rheumatoid arthritis, X-rays can track joint damage over time, and blood tests can indicate a higher level of inflammation throughout the body.
When a blood panel rules out RA, however, zeroing in on fibromyalgia gets tricky because symptoms vary among women with fibromyalgia.
“When everything [else] comes back negative, then you think, OK, maybe it’s fibromyalgia,” says Magued Fadly, M.D., founder of the California Spine and Pain Institute. “Some patients come to me with a clear diagnosis – you can’t touch any part of their body – while some don’t have tender points.”
4. Depression
Fibromyalgia and clinical depression share a bevy of symptoms, including fatigue, sleep disturbances, headaches, digestive problems, and aches and pains, according to the American Academy of Family Physicians. Both also can be triggered by stressful life events, such as job loss, divorce or death of a loved one.
But fibromyalgia and clinical depression are separate illnesses, although about 20% of fibromyalgia patients have a co-existing depression or anxiety disorder, according to the NFA.
Because symptoms of fibromyalgia are not universally accepted as “real,” some doctors pass them off as depression, Holtorf says. Also, it’s not surprising that someone suffering the undiagnosed chronic pain of fibromyalgia would suffer from clinical depression too.
“Getting the fibromyalgia diagnosis wasn’t depressing,” recalls Halstead, the retired Army officer. “It was getting to the diagnosis that was depressing. I knew I wasn’t making it up.”
The main difference between the two conditions? Again, the pain of fibromyalgia is more intense and its tender points make it more distinct, Fadly says.
5. Irritable bowel syndrome (IBS)
IBS is characterized by cramping, abdominal pain, bloating, constipation and/or diarrhea. Up to 80% of fibromyalgia patients also endure chronic gastrointestinal distress.
In fibromyalgia’s early stages, Prokopy experienced rectal pain that prompted several invasive tests, including a colonoscopy. Doctors found nothing.
“My primary care physician was frustrated, I was frustrated,” Prokopy says.
Like fibromyalgia, IBS has no specific diagnostic test. Diagnosis is generally based on a complete medical history that includes a careful description of symptoms and a physical examination.
The differentiating symptom between the two disorders is chronic, widespread pain, Holtorf says.
6. Multiple sclerosis
The dizziness, impaired coordination, pain, fatigue and cognitive difficulties that exemplify multiple sclerosis (MS) are often felt by fibromyalgia sufferers, according to the National Multiple Sclerosis Society.
A series of laboratory tests can determine if a person has MS and not fibromyalgia. For MS, magnetic resonance scans (MRI) can spot lesions on the brain and spinal cord, and spinal fluid analyses can detect levels of certain immune system proteins present in the condition.
7. Hypothyroidism
Hypothyroidism was one of the first conditions doctors suspected when Kasmin Boswell, Ph.D., a psychologist living near Los Angeles, developed symptoms of fibromyalgia. Since this condition – in which the thyroid gland doesn’t make enough of the hormones that control metabolism – can include muscle pain, fatigue, headaches and weight gain, the two can easily be mistaken for one another.
Like fibromyalgia, hypothyroidism strikes more women than men, according to the NIH. It also can make people more sensitive to cold, cause constipation and lead to depression.
“When I complained about the weight gain and the pervasive lack of sleep, my doctors… just balled everything together and told me if I just got enough exercise and didn’t stress so much, I could sleep better and the weight would normalize,” says Boswell, a medical science liaison who also helps athletes, executives, medical residents and practitioners deal with fibromyalgia.
Unlike a fibromyalgia diagnosis, however, a physical exam and blood tests can help distinguish hypothyroidism, Holtorf says. The thyroid gland, which can be palpated in the neck, may be smaller than normal, and blood tests typically reveal lower levels of thyroid hormones.
Prepare for doctors’ visits
For those experiencing these and other commonly mistaken symptoms of fibromyalgia, Boswell and Prokopy recommend keeping notes on how your body responds to weather changes, menstrual-related hormonal fluctuations, poor quality sleep, stress and overexertion.
“Write down all the things you’re experiencing, because you can get flustered and frustrated when you’re in the [doctor’s] office,” Prokopy advises. “Spend a couple of days carrying around a notebook.”
If your doctor dismisses your complaints, “don’t be combative,” she adds. “Get a new doctor, because that’s not a person you want to work with.”
For more expert advice and information, visit our Fibromyalgia Health Center .
How Much Do You Know About Fibromyalgia?
Described by Hippocrates in ancient Greece, fibromyalgia is one of the world’s oldest medical mysteries. The disease – a complex illness marked by chronic muscle, tendon and ligament pain, fatigue and multiple tender points on the body – affects about 2% percent of Americans, most of them women.
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