This is a very good question. I’ll tell you my story below. Here’s the official line.
Polymyalgia rheumatica (PMR) manifests as a bone/muscle disease. Usual symptoms are stiffness and pain in shoulders and hips that is worst in the morning and doesn’t subside for at least half an hour. Other joints can be involved but shoulders and hips are the bottom line. It usually occurs in older people, more commonly women than men and also more commonly in people from higher latitudes. But there are always exceptions to every rule.
How it all began for me
My symptoms started a while after Christmas 2015. I had picked up a heavy bag full of lesson plans to show a friend. I did it with immense enthusiasm and basically tore the rotator cuff in my shoulder. The next day I had a very sore and stiff shoulder, and also back pain on the opposite side, so I could see what had happened. I naturally expected it to sort itself out after a few weeks as my body is very healthy and does this for me with all sorts of things. However, after a few weeks everything became much worse. When I woke in the morning, I couldn’t lift my arms without pain, I couldn’t work out how to get out of bed and I had trouble lifting my bags for work.
By March or April, my symptoms were very severe stiffness and pain in my shoulders and hips, so I had to plan how to roll over in bed (lift this arm and put it here etc..). I’d eventually manage to get out of bed and struggle down the stairs to where the cats were demanding food. I’d have to lift my right arm with my left one to reach into the cupboard. Bending down was very difficult so I’d have to chuck the catfood at the bowls and hope it didn’t splash too much. If I dropped anything else (not catfood), I could pick it up with my foot and reach it up to my hand.
I couldn’t climb up onto the chair to water the plants on a high shelf or to open the windows at work. If I was on the floor for any reason (to start with I was sleeping on a mattress on the floor), I had to push up on my left thigh. This wrecked the back of my knee.
If I was sitting on a chair and wanted to stand up, I would have to think how to do it, rock, possibly stretch my legs straight out in front of me first (very painful) and then breathe out as I stood to reduce the pain and then slowly straighten up.
If I stood still for too long, I found it hard to bend to sit down.
I had painful, aching swellings in my wrists which I felt were related. I have found information since that implies that everything was caused by some sort of bursitis in my shoulders and hips which spread to other areas. Driving in the morning was tricky – I wore wrist braces so that I could get into reverse gear.
Oh and, of course, my sleep was terrible!
The worst thing really was that I am 62 with a job I need for income, live on my own and was suddenly disabled feeling like I was 92.
Going to the doctor
I went to the doctor and had an x-ray which confirmed there was no bone problems in my shoulder. She booked me in to the physiotherapist for torn rotator cuff exercises. Over the weeks I saw him, my symptoms grew worse and both shoulders were now involved. He thought I might have fibromyalgia but I didn’t think the symptoms fitted. I googled stiff shoulders and hips in morning and PMR came up. All the symptoms fitted but I continued to check other possible things it could be – fybromyalgia? rheumatoid arthritis? osteoarthritis? bursitis? gout? I decided to only believe anything I could find a scholarly article on it, which is why you won’t find many links to ‘health’ websites here. I had to have evidence that the medical profession would believe. And Google is full of old rubbish. Try reading any medical advice from the Daily Express for example. If it starts ‘doctors say’ then it’s likely to be rubbish!
Here’s some more detailed info about the symptoms of PMR: Clinical manifestations and diagnosis of polymyalgia rheumatica You can see that I had most of them!
The thing is, it sounds as though it’s a rheumatic disease – the name means ‘muscle aching everywhere as well as bones’. Obviously this is just a description of what the symptoms feel like.
In fact, PMR is an auto-immune disease. This means that your immune system has gone into panic mode and is ‘attacking’ your own body rather than invaders from outside. More about that later…
There is no definitive test for it, just exclusion tests, to check you haven’t got obvious things like rheumatoid arthritis (the rheumatoid factor is high) etc. Generally the test that comes back positive to indicate it may be PMR is for inflammation. This is the ESR (erythrocyte sedimentation rate) test. However, that just shows inflammation generally so still proves nothing. In addition, although some people have high ESRs, other people have normal (you can read about it in the above link).
The first GP I talked to told me my ESR wasn’t particularly high. Having read the info previously, I knew that 20 was a normal sort of level. It turns out that my level was 41 (which he didn’t tell me at the time), and that’s good enough as an indicator of PMR. (5-20% of people have that although some people have much higher levels) He suggested I take ibuprofen continually and booked me a second blood test 6 weeks later. I decided that I would make sure I was as inflamed as possible on the day of this second test, so I stopped taking ibuprofen for 36 hours beforehand (I read that this was the half life). So I had one day on full blown PMR. Ouch! The bloods came back as 47 on that test. You should know that some people have normal ESR levels and it’s still PMR.
Trial by prednisolone
The number one way to tell if you’ve got PMR is to test by prednisone/prednisolone. (Prednisone breaks down into prednisolone in the liver, so if you are given prednisolone, your liver doesn’t have the work to do and it gets into your system a couple of hours quicker. Also better for the liver!) If it’s PMR, there should be a major reduction in symptoms within 24 hours or so of taking the first dose of prednisolone. If you still have the same symptoms a week later, then it’s most likely not PMR.
Research suggests the initial dose should be 0.2mg per kg, so I should have been given 14mg, but actually was given 15mg so no enormous difference. I hadn’t taken any painkillers that day and by the evening I felt better than I had ever felt with ibuprofen. By the next day, I was full of bounce with no symptoms of PMR at all. Magical pred!
Once you’ve been diagnosed with PMR and are on prednisolone, you will need to take it for a long time, and also reduce the dose infinitesimally slowly. Luckily, I knew this beforehand as well as I had researched the whole thing very thoroughly. ‘Long time’ might mean 2 years or 5 years, but very unlikely to be less than 18 months. There are a whole heap of bad side effects available for you by taking prednisolone, and I will talk about these in a separate blog. For every good thing, there is a bad thing – the tarot card wheel of fortune.
Anyway, that’s how I got to where I am: on 15mg prednisolone for the next month or so, then starting the long long journey down to 0mg. Next stop, a visit to the rheumatologist.