"Mechanical"/PMR pain difference: Hello all. Can... - PMRGCAuk

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"Mechanical"/PMR pain difference

Jontie profile image
22 Replies

Hello all. Can anyone shed light on this conundrum? I know it is not the case for everyone, but for me my CRP levels seem to correlate with my symptoms. I have gradually reduced my pred from 17 in June to 10 now. I have monthly blood tests and last month was the first time since my PMR diagnosis that my CRP levels were normal. I still have pain in all the usual places (and some less usual places!) after I overdo it, but it seems that this pain is not related to inflammation according to my CRP levels. So here is my question/confusion: It seems to be that 'mechanical' pain is not associated with inflammation, but 'PMR pain' is. This is despite the pain being in the same places and feeling the same. I don't understand how this can be the case. Can anyone explain?

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TooSore profile image
TooSore

I'm not really sure about the pain but am curious myself. My last bloodwork had my CRP levels at about the same level as the last time but I was experiencing more aches and stiffness. In talking with the doctor he decided that it's due to an increase in my activity although he also slowed the prednisone taper. If I think back to before PMR, I could exercise and get almost a good sore that I had worked/strengthened a muscle group, knowing it would disappear fairly quickly. Now not only does it bring on a little worry but it just doesn't go away the way it should. I am also prone to it turning into a real knot that causes a lot of pain and takes someone doing a release to go away. Although I feel I have a bit more PMR issues (based on timing and response to taking pred) I also have more of other muscle issues some based on the location bit also the length of time they hang around. I'm guessing that it's a slow muscle recovery due to oxygen flow but I really don't know. (And don't know how to help it along). I'm looking forward to reading the responses you get.

Jontie profile image
Jontie in reply to TooSore

Your experience sounds very similar to mine. The responses below are helpful to me - hope they are to you too!

SheffieldJane profile image
SheffieldJane

How can you be sure that your pain correlates with the inflammation levels shown in your blood tests?

It would be comforting if that were the case, giving some illusion,at least, of control. It hasn't been the case for me. My blood tests were only abnormal in the early days, as far as I know the read as normal now. I am currently failing to get from 7 mgs to 6 mgs of Pred with the return of distinctive PMR pain and stiffness below 7 mgs. I don't believe that a blood test would be sensitive enough to show this.

There is also the return of old arthritic pain in the parts of my body that I have it such as Cervical Spondylosis and my knees. This has been banked down by the steroid too I think. As my doses get lower these familiar pains are poking through.

Not sure I understand " It seems to be that " mechanical pain" is not associated with inflammation, but "PMR pain" is. This is despite the pain being in the same places and feeling the same".

Is this advice you have received from your doctor?

Hmmmm.

Jontie profile image
Jontie in reply to SheffieldJane

Hi Jane. As I said, I know it's not true for everyone, but in my case so far, when I have felt worse this has coincided with higher CRP levels. I only said it was a correlation and was not implying any causative effect! To be honest I struggled to articulate my question so I'm not surprised it was difficult to understand. I suppose I am interested in whether you can get pain without inflammation because I've still got (some of) the pain but, according to the CRP levels, I have no inflammation.

SheffieldJane profile image
SheffieldJane in reply to Jontie

You triggered a very useful thread Jontie!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Jontie,

I know it's not always easy to say exactly what pain is what.

This is my supposition - it may be wrong and I'm very happy to be corrected.

The pain associated with the inflammation caused by your PMR is controlled by the Pred, and provided you are on enough, then the CRP should be in the normal range - that just shows the drug is doing what it's supposed to.

However as we know inflammation can be caused by other things, stress, viruses etc which for many people affects the readings. That's why we say blood markers once you're diagnosed are secondary to symptoms.

When you "overdo" it you are putting extra stress on your muscles, which are in a weakened state from the underlying PMR (the Pred does nothing to help them it's just acting on the inflammation caused by the daily release of cytokines) and possibly the Pred itself - it is a listed side effect.

So your body, as it would pre PMR naturally tries to protect those weakened muscles, it sends substances to the affected areas which then produces more inflammation, and therefore pain. It's all inflammation, but from different sources and doing different things. Does that make sense?

Jontie profile image
Jontie in reply to DorsetLady

Thanks DL - yes that seems to be perfectly logical. But I still don't understand why, if it's all inflammation, my CRP is now normal? I guess it is a less than perfect test?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Jontie

Would say because the Pred is working on it - don’t think it’s clever enough to differentiate between PMR caused inflammation and naturally induced inflammation. ??

Soraya_PMR profile image
Soraya_PMR

Not quite understanding your question. And I’ve never had anything but perfectly normal ESR & CRP. So I can only ever judge by symptoms.

In my head it goes something like this:

PMR is the varied symptoms of an inflammatory process which sheds cytokines into your system with boring regularity.

Prednisolone is the super-hero that zaps the cytokines and reduces the inflammation.

Put PMR on one side of a set of ‘pain-scales’ and PRED on the other. Initially we have potentially too much Pred to clear out the collected mass of inflammation (muscles, bursitis, etc etc in various places that your own body has decided to attack) but gradually we decrease prednisolone to meet the demands of the PMR. Eventually the scales will balance when we find the lowest dose required to control the PMR. As PMR recedes you need less pred to balance the scales.

Ah but hang on! Other things can jump on the scales! Rest can leap on the pred side, aiding super-hero pred in its function, lots of rest potentially means you can reduce pred a tiny bit? But the villainous over-exercise-and overworked-muscles leaps on to the PMR side of the scales and unbalances things. So even though PMR is currently ‘stable’ you’ve tipped your scales into PAIN.

If only it were this simple! Add in the probable cyclical nature of PMR (rather than a straight line reduction). Plus Stress, infections, timing of pred dose and who knows what else that will leap on the PMR side of the scales to throw the equation out again.

Does that help any?

Jontie profile image
Jontie in reply to Soraya_PMR

Yes that is a great explanation. Thank you. I think I should just get the CRP thing out of my head. That was mainly what was confusing me because I thought CRP detected inflammation and there was no pain without inflammation. I think that is a rather naive/black and white perspective, so I think I will just focus on how I feel and ignore the CRP from now on!

Soraya_PMR profile image
Soraya_PMR in reply to Jontie

That sounds like a plan 👍🏼

Dr’s seem to concentrate on the blood results, but they can’t see or feel the PMR (well they could if they looked and listened). Being scientific they naturally like measurables. When I did my initial trial of steroids I was able to tell my GP that pre-pred (some 3 weeks prior to me grinding to a complete halt) I could shuffle a mile walk in 35 minutes; 18 hours after first pred dose I did the same walk in 20 minutes. Despite me saying how well I felt, could raise my arms, could climb stairs normally, I think it was this measurable gem that decided him that I should stay on pred.

As I said my blood markers are normal, which really gave my GP the herby-jeebies as he had nothing to titrate the pred against. Er hallo! There’s little old me! I can tell you how things are! 🙄

I still use my mile walking time as an indicator of my function, now it’s 18-19 minutes. But pain levels, tiredness etc all form a better picture for me than some blood results. Maybe those of us with normal results are luckier? (Once we’re diagnosed. Certainly doesn’t help with diagnosis.)

Another thought... now that your CRP/ESR are down to normal, they may stay there.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Soraya_PMR

Assuming the correct amount of Pred.... of course🤔🤷🏻‍♀️

Soraya_PMR profile image
Soraya_PMR in reply to DorsetLady

Haha, indeed 😶

Although....

Have I read this or dreamt it: some will attain normal CRP/PMR levels, and they COULD remain normal despite an increase in pain/inflammation/symptoms.

Some will have up/down results roughly corresponding to flares (although with some lag).

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Soraya_PMR

Indeed...... think that comes under “how long is a piece of string” category. And that’s a very deep box to dip into, especially on a Friday afternoon.

Have a good weekend. 😊

Soraya_PMR profile image
Soraya_PMR in reply to DorsetLady

I need a nap. My brain muscle has been PMR’d 🛌

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Jontie

Yes!! The symptoms are the key, first, foremost and always.

But Drs always want the blood tests to prove- (maybe they don’t believe the symptoms.) - but as we know not everybody gets raised bloods, and if they do they invariably lag behind the symptoms. Plus of course, they can be skewed by other problems. So of interest maybe, but not 100% reliable.

marigoldb profile image
marigoldb in reply to Soraya_PMR

Yes helpful. Though thinking I was having a flare up GP ordered full blood count. Result CRP 3, ESR 8, so there I am, no explanation apart from what you say. I have taken 6 weeks to taper from 5mg to 4mg, all the old aches back, so back up to 5 again. Disappointed as this is my 3rd year on Prednisolone, second time round, and I have osteoporosis too. Must be positive, I did have 18 years in remission first time, so hope it will come again!

PMRpro profile image
PMRproAmbassador in reply to marigoldb

You are still on some pred - for many people that damps the inflammatory response by the liver but if it isn't enough then the symptoms will break through. Treat the patient - not the numbers.

PMRpro profile image
PMRproAmbassador

Spasmed muscles don't necessarily have to be inflamed. Nor does DOMS raise the CRP for long. Don't know if this helps??

marksdailyapple.com/the-rel...

You should have been left on your starting dose until your CRP was significantly reduced, preferably to normal range, and the symptoms had improved a lot before starting to reduce really. It isn't rocket science...

The pred just mops up the inflammation caused each day - and if there isn't any left over, there is nothing to prod the liver to produce the proteins that contribute to the ESR being raised, one of which is CRP. The actual disorder though is not the PMR as such but an underlying autoimmune disorder and that continues in the background - attacking body tissues and quite often making you feel as if you have flu. It leaves your muscles delicate and intolerant of acute exercise so if you do too much (and this is a relative concept, not absolute) you develop DOMS, delayed onset muscle soreness, just as you would have done normally with too much exercise. However, your muscles also cannot heal themselves properly so it is more severe than you would expect and will last much longer than you woud expect. I doubt the CRP would be raised for long after trying to run a 10km race without training (though I stand to be corrected). You might do not quite enough on one day to feel sore - but what you then do the next day adds on.

Jontie profile image
Jontie in reply to PMRpro

Now I understand! Thanks.

Jontie profile image
Jontie in reply to PMRpro

Interesting article too. I was surprised to read that "your body gets stronger via the inflammatory response to the stress and by rebuilding and refortifying its tissues to deal with future demands". I had assumed that inflammation was just bad - period. I guess, the problem with PMR is that without the pred, there is no opportunity for the body to 'rebuild and refortify'.

PMRpro profile image
PMRproAmbassador in reply to Jontie

Inflammation is needed to repair things but it is all a question of degree. And that is the primary problem of learning to live with PMR where the inflammatory response has gone nuts, making the cytokines that the body NEEDS to function properly be involved in attacking the body as an enemy. It's horribly complicated - it makes my brain hurt!!

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