Can PMR come on in 2 waves

[Lauterbach]

Hi,

Off to get my vaccine jab Friday morning at a local site within walking distance. Will report on how it goes.

And apologies for a long post, but a couple of questions: is it possible for PMR to come on in two waves? The first: with only a minor impact, but which then sits there waiting for an opportunity to launch a full flow attack. I ask because back in May2020 I took part in a fundraising Movement Marathon for the Maytree Charity (see plug below). This consisted of a 5 day home based event in which you chose the Movement and the time period. I chose a 75 minute/day session of Turbo Training (aka an exercise bike). At the end of the 5 days every morning the tops of my thighs would be very stiff. It would go away after a bit of walking so I put it down to just tired muscles. But it didn’t go away as you would expect from tired muscles. Then in late July I had to clear a creeper that was choking a tree. So I spent an afternoon tugging, yanking and pulling creeper out of the tree using my left arm. That was it: next morning I couldn’t raise my arms, turn my neck, walk properly: in other words a real mess, with the upper left arm the most affected, i.e. painful And that continued for 3 – 4 weeks until I saw the Doc about something else and he said the magic words “I know what that is” and it was welcome to PMR. So could the initial muscle tightness from the Marathon have been PMR in waiting?

Also since August I’ve tapered from 20 Mg to 15 to 12.5 and now on 10Mg/day. Now it’s mostly fine but during the day sometimes when I move my left arm I get a repeat of the pain in the upper muscles. Now it is intermittent and not there the whole time. Would this be a sign of 10Mg not being quite enough or a sign that PMR has so damaged it that muscle that it will periodically ache no matter the Pred dosage? I ask ‘cos I’m most probably going to be tapered down from 10Mg pretty soon

Maytree, in times normal, offers a fully funded 5 day residential stay at its N London premises for people with suicidal feelings. Should you know anyone in this situation then full details can be found at Maytree.org.uk

[DorsetLady PMRGCAuk volunteer]

Hope you don’t mind, but this link might work -maytree.org.uk

As for muscles etc ......quite probably PMR inflammation building up... although for some people it seems to ‘come on overnight’, actually it’s probably been building up for sometime without the patient realising.

Quite a quick tapering schedule since Aug although you started a bit higher than some (usual is 15mg), you’ve obviously got to the dose that it teetering on the just enough/not quite enough.

I would see how things go, you maybe need an extra mg - particularly if you’ve done some slightly more strenuous previous day....and definitely try and persuade doctor that a reduction at the moment is not advisable - until you’ve sorted out the arm, whether is be PMR or whatever.

[Lauterbach in reply to DorsetLady]

Hi DL,

Many thanks for your reply. The PMR may have been building up, but that extra exertion of de-creepering that tree certainly triggered it overnight from a vague nuisance that quickly wore off to very painful legs, arms, neck that stayed with me all day and night. Still thank goodness for Pred. And thanks for the Maytree correction. Unfortunately whilst in lockdown all we can offer are telephone befriending calls

[PMRpro Ambassador]

My PMR came in steps - it started with being unable to sleep with my arms above my head, then gradually it became harder to do step classes until I couldn't step up onto the step at all. Then I wanted to use the cross-trainer - agonising pain in my quads. No cross-trainer, no pain, just stiff. But it was not until much later that I woke up one morning in agony. There are doctors who won't countenance the idea of a slow approach but there are almost as many versions of PMR as patients with it.

You have a GP who will discuss 2 things in the same appointment???? Hope they are as accommodating when you ask to slow down with the taper - I would want to wait until the long-lasting DOMS (delayed onset muscle soreness) has eased if you have woken it up and definitely not more than 1mg at a time. I really do think that PMR seeks out any pre-existing problem. Like old war wounds ...

[Lauterbach in reply to PMRpro]

Hi PMRpro,

Yes I'm very lucky with that doctor. I've been with him for over 20 years and up to now have very rarely had to see him. So I think he knows that if I ask about something then it is worth checking into. And very grateful he diagnosed it on the spot. However, I'm worried that he must be getting near, or indeed over, retirement age.

[Coffeebeans]

Hi Lauterbach

Mine came on in three distinct steps with no exacerbating circumstances that I can identify.

First off was lower back/hip pain on mostly the right side but also on the left. Then around 2 months later I woke up with a 'cricked' neck. This got slowly worse over 2 weeks until I couldn't turn my head enough to drive safely. I also felt rotten, really fatigued and generally ill.

This then extended into the muscles of the shoulder, neck and tops of arms. It also extended into quads.

You do hear allsorts from gradual.to over night symptoms so I would say anything goes!

[Lauterbach in reply to Coffeebeans]

Hi CB, it certainly seems PMR can attack you in a number of ways. And yes I had the couldn't turn my head to drive safely bit

[Joanbill13]

Over the last two days I have had terrible pain in the top of my right arm. Just out of the blue. Have cleaned the kitchen floor and done a bit of vacuuming

[Lauterbach in reply to Joanbill13]

Hi JoanBill13, it seems like the PMR doesn't like anything over and above your ordinary work days. And it does attack very viciously doesn't it

[Joanbill13 in reply to Lauterbach]

Certainly does