You reach the ripe old age of 70 without encountering any health problems. But suddenly, your life changes for the worse. You have acquired a mysterious-sounding condition that goes by the name “polymyalgia rheumatica” (PMR).
You may ask yourself: “What has happened to me?”
From the medical viewpoint
PMR is not an uncommon inflammatory condition that occurs in people over 50 and, more commonly, in women .
Onset is sudden (often overnight) and is characterised by severe pain and stiffness around the shoulders and hips. People report difficulty with dressing in the morning. Fatigue, weight loss, weakness and fever can be additional clinical features.
Usually, but not always, blood markers of inflammation (ESR and CRP) are markedly elevated.
Inflammation occurs in and around the shoulder and hip joints and is also found in the small blood vessels in the adjacent muscles.
An almost complete response to a moderate dose of an oral glucocorticoid (e.g., prednisolone) is almost diagnostic of the condition. The dose is slowly reduced, and complete remission usually occurs within two years. Side effects are common, the most important of which is osteoporosis (and associated minimal trauma fractures).
From the patient’s viewpoint
Dr Helen Twohig and her colleagues from the University of Sheffield (UK) interviewed 22 patients from South Yorkshire to find out what it was like for them to have contracted PMR . Here are some of their experiences, as recorded by the team:
“I could hardly move in bed, it was aching all down my back, and I just felt, I suddenly felt I’d aged, like I were about 80 years old. That’s what it felt like. And very stiff, very achy like when you turned over in bed it was painful.”
“Well, it’s not pain, it was more of a bad ache, and I couldn’t do much, you know.”
“And I really screamed in pain. You know, to get dressed. Or even to lift my arms up. The pain was terrible.”
“I couldn’t put my coat on, couldn’t get up the stairs, couldn’t get in or out of the car. I’ve got an allotment and I were in the greenhouse and on my knees and I couldn’t get up, I’d got to crawl on my knees to get something to pull me up with.”
(c) Experience of care
“And I went to the doctors, well they were telling me to take paracetamols like and then when they were no good, he increased it to some stronger stuff and I went back again, I said ‘they weren’t doing us any good’, and then I suggested to him could it be this Simvastatin that I were on. And he said he’d thought of that and stopped it for about a month, I think. And that didn’t have any effect, so I went, I had a blood test, and went for the results of the blood test and he more or less knew what it was then straightaway.”
“When they said what I’d got, I was very pleased when they gave me the medication and it started to work so well. I was very happy about that but when they said that there was no cure for it because we don’t know what it is, that was a bit upsetting.”
“I was smiling again because I’d got the power, I’d got the strength back. I’d got the walking back and I could go out.”
“Yeah, I have put a bit of weight on with it and I’ve noticed that my stomach gets really swollen, more so when I have had something to eat kind of thing and my face looks really bloated some days … but I just think back to when I first started with it, you know, and I think to me, it’s a small price to pay, you know.”
(d) Psychological impact
“But, well, I thought worst, you know, I thought I were like, where these illnesses where you just feel paralysed, I don’t know what they call them but I felt it were going to be something like that, because I were getting worse.”
“Because I hadn’t heard of it at all. I really did think oh thank God someone is listening to me. I thought I was imagining it.”
As this article shows, PMR is a good example of the distinction between “disease” and “illness”: doctors diagnose and treat diseases, whereas patients experience illnesses .
By John Quintner Physician in Rheumatology and Pain Medicine (retired)
- Eisenberg L. Disease and illness: distinctions between professional and popular ideas of sickness. Culture, Medicine and Psychiatry 1977;1;9-23.
- Lundberg IE, Sharma A, Turesson C. Mohammad AJ. An update on polymyalgia rheumatic. J Intern Med 2022;292:717-732. doi: 10.1111/joim.13525
- Twohig H, Mitchell C, Mallen C, et al. “I suddenly felt I’d aged”: a qualitative study of patient experiences of polymyalgia rheumatica (PMR). Patient Education and Counseling 2015;98(5):645-650. doi: 10.1016/j.pec.2014.12.013