Difficult Questions About the Polymyalgia Rheumatica (PMR) Diagnosis
The PMR Diagnosis
When I started feeling pain in my shoulders, neck, and hips, I was lucky. Not because the pain could have been worse (that'd be hard to believe), but because I knew what those aches meant. Since my mom had been diagnosed with PMR three years before, I recognized the symptoms immediately and told my doctor.
For many, coming to the diagnosis is not so easy. Many have to persist—through scores of tests, misdiagnoses, misinformation, and lack of knowledge—to find out what's wrong with them, and even finally arriving at a diagnosis of polymyalgia rheumatica (PMR) may not help them to understand why they have it, how they got it, or how long it will last. Because PMR is a rather mysterious disease, and even some doctors don't know much about it.
However, too-quick misdiagnoses of PMR cause more problems than underdiagnoses, and misdiagnosis can be extremely detrimental1, which means it's smart for doctors and patients to explore every possible issue before settling on a PMR diagnosis.
So here, I've compiled the best answers I could find for all my questions about PMR, from various sources: Experts in the field, my doctors, published research, and from fellow PMR-sufferers.
Questions about the PMR diagnosis:
- What does a PMR diagnosis really mean for my life?
- What causes PMR, and how do people get it?
- Is there a test for PMR? (Below, you'll find information to help you interpret those lab results.)
- What does PMR feel like, physically and emotionally?
- Do you have to be old to get PMR, and if so, how old?
- Do men get PMR, or only women?
- Can PMR cause permanent damage (with or without prednisone)?
- What diagnoses or illnesses could PMR be mistaken for, and how can I avoid a misdiagnosis? (Below, you'll find a long list of possible misdiagnoses.)
- What If diagnosis is delayed? What's the worst that could happen?
- Will diet and exercise help PMR symptoms, and can PMR be controlled by diet and exercise only?
You'll find all the answers I got for these questions below.
What does a PMR diagnosis mean?
An autoimmune disease is a condition that occurs when your immune system stops functioning properly and either becomes abnormally inactive or overactive. With the latter, the body is trying to attack its own tissues.
Experts believe that PMR is an autoimmune disease, a disorder characterized by overactive immune function, which means that your immune system is working hard to heal problems that don't exist. For some reason nobody fully understands, your body has suddenly decided that your healthy body parts are not healthy, or perhaps it has failed to recognize parts of your body entirely. Your immune system suddenly decides that your joints are unhealthy or foreign, so it releases proteins (autoantibodies) to attack those healthy cells. The result is inflammation and pain.
With polymyalgia rheumatica, "poly" means many, "mya" means muscles, and "algia" means pain. "Rheumatica" means the many pains and stiffness affect your joints and muscle tissue especially in your shoulders, hips, spine, and neck. In PMR, it's actually not the muscles (which look totally normal in a biopsy) but the synovium and bursae around the joints that become inflamed and refer pain, stiffness, and weakness to the whole area.
Nobody knows exactly why your immune system is mixed up, what triggered the confusion, or when it will stop, but genetic and environmental factors may be involved. Some believe a virus might trigger its onset. Most doctors prescribe corticosteroid prednisone to reduce the pain, but they don't usually do anything more to find or treat the source of the immune system's confusion.
If you're wondering if there is a cure and if the pain will ever end, you might like to read Is There a Cure for Polymyalgia Rheumatica (PMR)?
What causes PMR?
Nobody knows exactly what triggers PMR. The fact that it mainly affects older (aged 50-70) women of Northern European descent suggests that it may be genetic, and there is a slight tendency for it to run in families. It's also likely related to the aging process. Some also believe a virus might trigger its onset, but they have not identified a virus.
Why and how do people get it?
Nobody knows, but age (50-70), gender (female), and race (caucasian) all seem to be contributing factors.
With PMR, nobody knows exactly why your immune system is mixed up, what triggered the confusion, or when it will stop.
Is there a test for PMR?
There is no blood test that clearly shows whether or not someone has PMR. There are some tests to check inflammation levels, but none to ascertain PMR without a doubt. Many doctors say that if your pain responds well to prednisone, that's proof that you have PMR (or, more accurately, if low doses of steroids don't help, PMR is usually not the cause). To me, this seems like a backward way of approaching the situation, to say the least. Besides, what if you don't want to take corticosteroids?
There are two blood tests that detect abnormally high inflammation:
- The erythrocyte sedimentation rate (ESR or "sed rate") test
- C-reactive protein (CRP) test
What is a "high" ESR or sed rate?
The "normal" range is 0-33 mm/hr, so anything larger than 33 is considered noteworthy.
What is a "normal" level of c-reactive protein?
Any value larger than 0.5 mg/dL is considered "above normal" and noteworthy.
Can you have "normal" ranges for both the sed rate and CRP test and still be diagnosed with PMR?
PMR can be very hard to diagnose since there is no definitive test. Some patients may have normal or only slightly high results on one or both tests. Doctors may look at many other tests and symptoms when making their diagnoses.
Does PMR Show Up on an X Ray?
An x ray, MRI, or CT scan won't show PMR, but they may show inflammation that might indicate PMR.2
How did your doctor diagnose PMR?
My GP doctor sent me for blood tests. They took many, many vials of blood to check about 23 different things, including a test for antibodies associated with rheumatoid arthritis (to rule out that disease). My ESR sed rate was 41 and my c-reactive protein was 1.3. After reviewing these results, my GP doctor said I have "mild to moderate" inflammation and conferred with a rheumatologist, who took many other symptoms into account to make her diagnosis. Because my pain and stiffness follow the PMR pattern (they affect both sides of my body in my shoulders, upper arms, neck, hips, sacrum, and thighs), with flares in the morning and after periods of inactivity. She said I was on the young side for the diagnosis (52), but age is not a determining factor. My rheumatologist sent me for a CT scan to make sure
What does PMR feel like?
Everyone experiences PMR symptoms differently, but for me...
- Sleeping is difficult. I can't get comfortable, can't roll around, and can't move the blankets. I wake up often, sweating.
- Bending over or lifting my arms can be excruciating.
- The pain is worst in the morning. Sometimes, I can't even dress myself. Shirts and shoes are extra hard.
- I struggle to get myself up from a seated position; sitting on the floor is no longer possible.
- I can't lift anything very high. Putting the dishes away is often impossible.
I often experience flu-like symptoms (fever, chills, lack of appetite).
- I'm anemic, which makes me feel weak, fatigued, and short of breath.
- I can't exercise like I used to. I used to walk 4 miles a day but now, on some days, I can barely manage to leave the house.
Things I can't do with PMR
- lift things over my head (including a shirt I'm trying to put on)
- drive (first thing in the morning, I can't move my arms sufficiently to drive a car safely)
- sleep through the night (pain, stiffness); I used to sleep on my stomach, but now I'm stuck on my back
- sit for long stretches (I need to get up every half hour)
- exercise (some days, it hurts too much to move)
- think normal thoughts (my entire reality is clouded by my physical symptoms)
Do you have to be old to get a PMR diagnosis?
Many doctors believe that PMR only affects older people and that you can't get PMR before age 50. However, this is not true. The average age of the PMR-sufferer is 70, but many people aged 50 or less are diagnosed. I was 52 when I was first diagnosed. Many people younger than me are diagnosed, as well.
Do only women get PMR?
PMR affects approximately twice as many females as males, but still, many men are diagnosed with PMR every year.
Polymyalgia rheumatica is the second most common autoimmune rheumatic disease after rheumatoid arthritis, with a lifetime risk of 2.4% for women, and 1.7% for men. It is the most common rheumatic disease in patients over 50 years old.— https://www.nps.org.au
Can PMR cause permanent damage?
There is no evidence that PMR causes permanent damage, although
- muscles may weaken and atrophy over time with lack of use (although a biopsy will show no physical damage—it feels like your muscles are getting damaged, but they're are not)
- weight gain and a heightened risk of infection and anemia might trigger complications
- depression and anxiety can also have lasting effects.
Most patients' PMR symptoms end after 1 to 5 years.
What diagnoses or illnesses could PMR be mistaken for?
To avoid misdiagnoses or delays in proper diagnoses, and because there is no specific test for PMR, it may be useful to know which conditions have similar symptoms.
- Osteoarthritis, polymyositis, or other inflammatory diseases: Joint pain is expected in these illnesses.
- Fibromyalgia: Pain, fatigue, sleep and mood issues all mimic PMR symptoms.
- Pinched nerves or rotator cuff issues: neck and shoulder pain
- Adverse reactions to medications: Adverse reactions to medications can also confuse things, particularly since many older people take several drugs; statin-induced muscle pain is a prime example of a false lead."
- Cancer, tuberculosis, or cardiovascular disease: Weight loss, anemia, fever, and weakness all suggest these issues.
- Endocrine disorders or thyroid issues: Fatigue and weakness suggest these diagnoses.
- Parkinson's or Parkinsonisms: Stiffness suggests these diagnoses.
PMR might look like another inflammatory disease, like...
- rheumatoid arthritis
- spondyloarthropathies (joint diseases)
- connective tissue disorders
- inflammatory mytositis; polymyositisg
- giant temporal arteritis (GTA)
PMR might also have symptoms similar to musculoskeletal issues, like...
- degenerative joint disease, bursitis, or tendonitis
- rotator cuff arthropathy
- adhesive capsulitis
- chronic pain syndromes
Other conditions PMR might look like
- malignancy or infection
- statin-associated myopathy
- endocrinopathy (thyroid disorders)
- metabolic bone diseases
- Lyme's Disease
How can I avoid a PMR misdiagnosis?
Lab tests, x-rays, and a thorough examination of all your symptoms are needed to exclude other conditions. If you feel that there is not enough evidence for the diagnosis or that other conditions might have been missed, express these concerns to your doctors.
Recently, my mother's friend was diagnosed and treated for PMR when, in fact, she had a bladder infection. By the time they realized the mistake, there was sepsis and it was too late. She died. It's really important to get the right diagnosis!
What If I don't get a quick diagnosis? What could happen?
It can be difficult waiting to see doctors and get test results. In some cases, these delays can be dangerous.
- Giant cell arteritis (GCA), which affects about 10 to 20% of people with PMR, needs to be treated immediately with prednisone to prevent blindness, stroke, and even death. If you have headaches, scalp tenderness, jaw pain, and/or blurred vision, tell your doctor immediately.
- Pain. Pain itself is not dangerous, but my rheumatologist said that some patients enter a pain cycle that's hard to break out of, even after treatment.
Short delays in diagnoses are probably inevitable and are definitely preferable to misdiagnoses. However, long delays in diagnosis and treatment can have a cumulative detrimental effect. After years, there is an increased risk cardiovascular issues and complications as a result of chronic inflammation.
PMR can be complicated by a more serious disease.
Make sure your doctors are considering every possibility.
Will diet and exercise help PMR symptoms?
Can PMR be controlled by diet and exercise? That depends on many factors, including your levels of inflammation, your tolerance to pain, your age, and how healthy you are.
Exercise is extremely important for PMR. Regular exercise is essential to maintain joint flexibility, muscle strength and function. Regular exercise helps with managing pain and maintaining joint flexibility and muscle health.
What else might help control pain and inflammation?
- Supplements. Certain supplements may help to lessen inflammation. Omega-3s, turmeric, curcumin, and ginger may all help to reduce inflammation. Several spices may also help with chronic inflammation and inflammatory disease, including turmeric, ginger, garlic, and cayenne.
- Nonsteroidal anti-inflammatory drugs (NSAIDs). Over-the-counter NSAIDs like aspirin, ibuprofen (Advil), and naproxen (Aleve), can help reduce inflammation and pain, but long-term use can be dangerous. My doctor said I could take 3 Aleves (220 mg each) per day and after a year, we'd discuss alternatives.
- My rheumatologist recommended a Mediterranean diet. A 2018 study found that participants following this diet had lower markers of inflammation.
Can PMR be controlled by diet and exercise only?
That still depends on your levels of inflammation, tolerance to pain, age, how healthy you are, and other variables. Many people claim to have treated PMR with diet and exercise alone, although there have been no studies. But even if you don't control it completely, diet and exercise will certainly help.
If you're not sure you want to use prednisone, you might like to read I Don't Want to Take Prednisone for PMR: Are Corticosteroids Necessary?
PMR Pain Is Like Jell-O
In PMR, your pain is like Jell-O. Periods of inactivity (working at a desk, sitting for a long car or plane ride, watching a show) may trigger stiffness and cause the joints to seize. Your muscles feel like they harden or "freeze" like liquid Jell-O solidifying in a pan. The longer you sit, the "harder" your joints become.
What about your diagnosis?
How did you reach a PMR diagnosis?
Fellow PMR Patients
Talking to others about the PMR experience can help. Knowing that you're not alone is a huge relief. I recommend reaching out to others with the diagnosis. I belong to both of these groups on Facebook:
What about you?
How did your PMR start?
Is PMR rare?
Some say PMR is "common," while others call it "rare." Which is true?
- The first diagnosis was in 1888, when it was called "senile rheumatic gout."
- PMR occurs at the rate of about 50 per 100,000, in people over 50 years of age, and it is estimated to affect about 450,000 individuals in the US (mostly older females of northern European caucasian descent).
- There is evidence to suggest that the incidence of PMR has increased slightly in the past 15 years.3
- After rheumatoid arthritis, PMR is the second most common rheumatic autoimmune disease.
- Since there are so many baby boomers entering their 70s, doctors expect to see an upsurge of PMR diagnoses.
1 US National Library of Medicine National Institutes of Health: Diagnosis of polymyalgia rheumatica usually means a favourable outcome for your patient, by Marcin Milchert and Marek Brzosko, May 2017.
2 Oxford Academic: Imaging of polymyalgia rheumatica: indications on its pathogenesis, diagnosis and prognosis by Dario Camellino, Marco A. Cimmino, May 2011.
3 US National Library of Medicine: Epidemiology of Polymyalgia Rheumatica 2000-2014 and Examination of Incidence and Survival Trends over 45 Years: A Population Based Study by Shafay Raheel, et.al. July 2017.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.