Skeletomuscular

The flare is not going well. In fact it’s not going at all. It’s been there along the whole length of my right leg for about two weeks now. Throb throb. A big polymyalgia echo with an attendant and depressing fog accompanying it. Not, naturally, that I’m allowing any of this to slow me down.

I’ve just done a six mile amble round the headland from Mumbles to Caswell Bay on Gower. Bright sun, lots of stiff breeze and not really that exerting. For a wild in the country walk the whole thing turned out to be extremely civilised. The trail was mostly concrete-topped with a regulation handrail on the seaward side to prevent those likely to sue the Council from falling off. People passed me carrying plastic-lidded Starbucks-style cups of coffee bought from any one of the many branches of the Surfside Café who have clearly won the contract to provide refreshment along this stretch.

Could you tell I was a sufferer? Not really. It was only on the uppies that I slowed more than I once did. Leg muscles pulling. They never used to do that.

I get on the phone to Rheumatology. There’s a number on my appointment letter. I reach the Appointments Hot Line where the only thing they can suggest I do is call the hospital’s main number and ask to be put through. So I do that. But there’s no reply, just endless ringing. Switch board off at lunch.

I hunt the web and turn up a page clearly put there by Rheumatology itself. There’s a number. I dial and reach it. A recorded voice tells me that this is the Rheumatology Advice Line and would I leave a message. They’ll get back to me. But there may be a wait. Useless.

Eventually, after delving through my files of past hospital correspondence and appointment letters for various things, still active and past, going back several decades, I unearth a different general hospital number. I try it and, wham bam, I’m speaking to a real person. They put me through to rheumatology. It’s all pretty straightforward after that.

The flare from my description is not sounding much like a flare should. What I’ve described, says the rheumatologist, sounds more skeletomuscular. I get an appointment to go in again sooner rather than later. Plus the advice to reduce the prednisolone dose immediately. Let’s forget about the 20 mgs I’ve been trying because the flare was so awful. Instead we’ll go down from 15 mgs to 12.5 mgs daily. Will that lift the spirits? Ought to. I take a long stare into my Lumie SAD lamp, the Mediterranean once again flooding my study. I’ve got Mahler on the player, a bracing choice for a dull Tuesday morning. I go over to the machine and turn it up.

Flare

This is a word I’d barely considered in the past. A flare was something that temporarily lit the sky, that burned bright and long and cast shadows in strange colour over all it touched. Flares came out of guns and flew into the air. I’d never fired one. Never been near anyone who had. A flare in the night, a brief and fleeting streak of light that was there and then gone.

Polymyalgia flares don’t quite do this. They are something else.

My steady reduction of the Prednisolone dosage had been going well. 20 mgs down to 15 mgs daily with no perceptible change in how the condition felt. Then, on the advice of the GP, I made an attempt at talking 15 mgs one day and 10 mgs the next. See how you get on with that, she’d advised. Don’t go any lower over the Christmas period, we want to avoid problems then. We do. But then problems at Christmas come with the territory, do they not?

So what did I do? Followed her advice to the letter, set about the new 10/15 fluctuating dose the week before the festivities, followed the regime through the days of joy and holly, pudding and cake, drink and dancing, carol singing and wishing you could find a quiet room to lie down in. And then, unaccountably, and in a rush of I can do this thing bravado I knocked the dose down again. A week ago. Reduced to 10 mgs daily. I’m getting away from you, Prednisolone, I jeered. I will subdue your power. I will overcome you. I will win.

Days one to three at this new lower level went well enough. The nose bleeds lessened, the sleeping patterns began to steady, the depressions held back. And then I started to feel it. That polymyalgia echo up the backs of my legs, that steady pain of the proximate muscles that nothing seems able to shift. First one leg then both. Throb throb. Throb throb. Pain again for the New Year weekend. Just what I had been warned to avoid.

To fix it I’ve put the dose back to where it was several weeks ago. 15 mgs daily. And it has taken at least three days at this older level for the flare, because this, it seems, it what I have been suffering from, to subside.

It’s a setback, a depressing reminder of what lurks beneath. Polymyalgia is not cured by prednisolone, just held down. It’s like a carpet that covers a ugly floor. The sight of it may be gone but down below the floor is still there.

I’ve turned my SAD lamp on again. This is a my Lumie Mediterranean light wonder, a certain cure for winter depressions. Sitting in front of it is a joy, even with prednisolone coursing my system and PMR mumbling underneath. I’m playing Roy Orbison records and allowing the great man’s voice to soar upwards and take my spirit with it. It’s over. It’s over. Problem is it’s not. Not yet.