When Dr. H bounced into my gurney’s cubicle in Emerge and announced he knew what I “had”, a small bell tinkled in memory. “Polly Molly who?” I said
“Polymyalgia rheumatica,” he repeated.
I flipped through my roll of mental research files from the fibromyalgia days. Sure enough: there was a card labelled “Polymyalgia Rheumatica”. Not a jot of information on it. Obviously, it means “a lot of pain in the joints and assorted structures, as in arthritis” but what’s so special about Polly Molly?
“What’s the necessary cause for that?” I asked. As opposing to sufficient causes, I meant. Like the tubercle for tuberculosis, or a bug for chicken pox—something that must be present before the condition can arise.
“It’s just an auto-immune disorder,” he advised, with a look that insinuated that I was one of those out-there patients. “You’re a Caucasian woman, over fifty. Pain in the shoulder girdle, neck and pelvic girdle. High inflammatory marker—a CRP of 80 instead of 3. Morning stiffness.”
Three in the afternoon, I might have pointed out, is hardly morning, and at that hour I still felt like an amateurishly assembled arrangement of two-by-fours. But hey, he wasn’t wrong. My little-old-Dutch-lady body did fit the usual criteria for PMR. Not that the hospital sent me home with any information on Polly Molly, but our friendly neighborhood health store did provide two pages of basic information which both vindicated his diagnosis and set my feet on the further-research path.
What kind of fix was I in this time?
Just an auto-immune disorder. Where had I heard that phrase before? Correction—where hadn’t I heard that phrase recently in connection with so many diseases, disorders, conditions and syndromes? It seems as if the entire society’s auto-immune system is falling down on the job. Perhaps that isn’t so far from the truth. Perhaps I had just been handed another assignment as a canary in the mine. Here, strange bird: tweet this.
The déjà vu deepened as I eagerly read the twenty pages of material on PMR provided by Dr. T a few weeks later, one article on its diagnosis and the other on treatment. Particularly the discussion of diagnostic criteria for Polly Molly gave me an eerie feeling of having been a canary in a very similar mine, years ago.
The doctors are earnestly trying to formulate research criteria for this new disease, just as Dr. Frederick Wolfe and colleagues were putting together research criteria for fibromyalgia (hereinafter known as FM) a quarter century ago. That means they are merely deciding what patients need to show in order to be part of a study, rather than assembling a set of symptoms sufficient for a firm diagnosis. We all know how that turned out for FM, don’t we? It didn’t. Decades later, we still don’t have a necessary cause for FM and treatment is still just a series of stabs in the dark—or, in the case of the hapless canary, a hood dropped over the cage so the patient will shut her beak.
Marvelous. Another mystery illness to survive. Flashback to 1992, when I was so furious about being diagnosed as an “FMSsy” that I swore to find out everything about FM or die in the attempt. (And almost did, come to think of it—die, that is.)
So what’s to know about Polly Molly?
PMR is the next most common rheumatic-disease diagnosis among older adults after rheumatoid arthritis. The incidence is higher in northern areas and among people of northern European descent, with women two or three times more likely to be diagnosed with PMR.
With PMR, you can expect morning stiffness longer than half an hour, trouble dressing, and difficulty arising from bed or even turning over in bed. Pain is worse with movement and can interfere with sleep. Finger, wrist, ankle and foot joints can also feel stiff and inoperable, even to the point of developing what seems like carpal-tunnel syndrome, as synovitis and bursitis (joint inflammation) are common features and sometimes involve the tendons as well—no worries, however, as this kind of joint pain is not erosive; you’ll still have your joints whole when PMR is over. Moving shoulders back is usually particularly painful, as range of motion in shoulders, neck and hips is decreased. Muscle strength supposedly remains the same, although, obviously, if you don’t use certain muscles because of the pain, eventually muscle mass will be lost.
Some patients develop swelling or edema. Some develop anemia, or an increase in liver enzymes.
Periods of inactivity or sitting result in what is called the gel phenomenon, or what I call the recurring zombie phase. This is why your time at the computer will be limited to twenty minutes unless you have a walking desk.
The cause of PMR is unknown but this set of symptoms looks a lot like the symptoms of GCA, giant-cell arteritis, which is apparently a shortcut to a heart attack.; so there is concern to rule out the GCA danger before settling on just PMR as the diagnosis.
The European League against Rheumatism and the American College of Rheumatology have developed a system, just as was done for FM in 1990, to decide whether a diagnosis of PMR can be made. Three criteria must be present: age over fifty, bilateral shoulder aching, and an abnormal CRP or ESR score. On top of that, a patient must score over four points on the following criteria: morning stiffness longer than 45 minutes (2 points), pain or restricted motion at the hip (1 point), no rheumatoid factor or anti-cyclic citrulinated protein antibody in the blood test (2 points), and absence of peripheral joint pain (1 point).
That set of criteria is for research, remember. For patients in the office, it’s somewhat simpler: if you’re over 50 when it hits you, you’re stiff on both sides longer than half an hour in the mornings, your ESR is more than 40 mm/h or your CRP is high, and you respond well to prednisone, well, congratulations—you “have” PMR.
Notice that your response to prednisone, the alleged treatment for this cause-less disease, now becomes part of the diagnosis.
So I guess I don’t have PMR after all. Not only has my ESR not been measured, but I haven’t so much as sniffed a prednisone pill. Diagnosis: impossible.