Is this a flare?: Sorry, it’s the usual question... - PMRGCAuk

PMRGCAuk

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Is this a flare?

calibriel profile image
5 Replies

Sorry, it’s the usual question … for context, I was diagnosed in 2020; successfully tapered to almost zero over a year or so, then had a flare. Since then I’ve been hovering around the 1.5 - 3 mark: more because of other health and stress issues which made me pause the tapering, and which made me a bit jumpy about any hint that the PMR was grumbling, rather than any strong PMR symptoms. Recently I’ve been suffering twinges of stiffness in my lower back, glutes, and down the back of my thighs; and because I was also struggling to get rid of a heavy cold, I decided to do the flare protocol. I’m back now on 3mg and the cold is almost gone, but the extra pred didn’t seem to make any difference to the back and leg pain. Does this mean it was never PMR in the first place? I have to say the pain is not like the PMR pain I originally had, which was in my shoulders; also the original pain did the classic thing of coming on when I was sleeping, whereas this pain comes on when I’m active.

Thank you for reading and responding

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calibriel profile image
calibriel
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5 Replies
SnazzyD profile image
SnazzyD

If you have tightness in low back and some buttock muscles you can have these symptoms. It can feel like sciatica. This can come on from lack of movement, especially when under the weather. For example the piriformis muscle can cause havoc if it is tight. I have to keep on top of my flexibility daily to stop this kind of thing or else it is more £ going off to the osteopath or physio.

PMRpro profile image
PMRproAmbassador

I was about to say much the same as Snazzy has. What you describe can be part of a flare, even if it wasn't there originally as hamstrings can calso be affected by PMR.

However, it sounds more like a myofascial pain syndrome problem

mayoclinic.org/diseases-con...

Earlier today I gave this link

pathos-journal.com/2020_3_2...

which I haven't seen before but which I found really good despite the awful ENglish that makes it even harder to read. I've only ever thought of it as acute and the chronic aspect being more due to PMR. But it fits really well as the reason PMR drags on and on. What she desribed is exactly what happens when my rheumy examines me!! He uses the neural therapy she mentions but doesn't describe.

You had a hip done this time last year - that will have altered how you move and walk. Did any of this start back then? Or was that a recognisable flare? Has anything else like that happened in the last few months? Though I find that MPS problems can take months before really manifesting.

calibriel profile image
calibriel in reply toPMRpro

Thanks. I think the MPS sounds more severe and continuous than what I’m suffering from, which manifests itself as twinges - sometimes quite painful, and near disabling - but not present all the time; and it’s definitely affecting me when I’m on my feet and mobile, rather than when I’m lying in bed. If it doesn’t get any worse I can cope (I’m used to tolerating pain), but I wasn’t sure if it was a sign of something I should be treating more actively. At the moment, I’m just trying to keep mobile without over-exercising; taking paracetamol if I think it might help, and hoping it will go away!

PMRpro profile image
PMRproAmbassador in reply tocalibriel

Oh yes - if I stay in bed, nothing. Getting from sitting to standing before I had a set of steroid injections was excruciating. Once I could start moving it eased a bit but any false move and the excruciating bit reminded me not to do it again. The steroid injections sorted a sacroiliac inflammation problem but other back muscle bits remained at a much lower level . Two more steroid injections mean it is managed with 500mg paracetamol. I still struggle to walk on uneven ground or on good ground for more than a mile or so. It had been neglected for a long time - and the incidental finding of a spinal compression fracture resulted in a bisphosphonate infusion last year. SInce that the pain has slowly improved overall - but still the occasional poke if I am not careful.

Bedwell profile image
Bedwell

I certainly have twinges .. as you say.. in lower back. I am trying to take more exercise. Walking in water..at pool. Cranial osteopath says walking/ swimming is best thing .i have to walk the dog everyday anyway. Now on 1 mg.. hoping to reduce and off! In the next few months?!

I did wake up the other day and one leg completely numb which was scary! A gentle good shake and life came back.

I have got neuropathy anyway!! Hands and feet throb.. but no flares as such.. (shoulder probs that started me on pred 3 years ago. )am 86 as you may know. !!!!! Do post quite regularly!!!

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