PMR or something else: Hi everyone, I have the most... - PMRGCAuk

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PMR or something else

Uglow profile image
29 Replies

Hi everyone, I have the most awful pain in my rib area at back it feel like Iv pulled muscles with burning pain. My shoulder starting to ache too. I can hardly move. I did a bit of planting on table not bending swept up two days ago. I can’t work out if it pmr or due to old fracture vertebrae. Oxycodone and paracetamol not touching it.

My pred is 11mg from 12.5 10 days ago had a few aches for first 6 days but now this so have absolutely no idea what it is apart from extremely painful. Any advice please.

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Uglow profile image
Uglow
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29 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Oxycodone and paracetamol not touching it.

maybe therefore a flare....you could try going back to 12.5mg and seeing if that makes any difference - or could be costochondritis - it does very often occur along side PMR -

see link - or type costochondritis into search box for posts -

nhs.uk/conditions/costochon...

Uglow profile image
Uglow in reply toDorsetLady

Thank you I suspected as much. How long shall I try 12.5 please

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toUglow

7-10days - and see how you are….just as a matter of interest, why did you drop 1.5mg? Maybe 1mg next time?

Uglow profile image
Uglow

Gp pressure they wanted me to go to 10mg But I was worried so just went to 11mg so I’ll try 12.5 again and wait 7 days then if I’m ok back to 12 for how long please

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toUglow

From then I would do 3-4 week a time. Although 15-12.5-10mg is a “recognised “ taper, it is not achievable for everyone - and some doctors just don’t take that on board.

Even tapering from GCA doses, once I got down to 15mg I only reduced 1mg a time until 7mg then 0.5mg - result, no flares!

This is taken from guidelines…..if GP whinges at you -

* However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.

Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course.

Some benefit from a more gradual steroid taper.

Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.

* note the comments -

these are just guidelines, not set in stone!

Uglow profile image
Uglow in reply toDorsetLady

Do you think I could take pred tonight about 10 I’m in so much pain. I took 11 mg at 8 this morning

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toUglow

Could take an extra couple of mgs, but personally I wouldn’t take a full dose…otherwise you end upsetting your routine…

PMRpro profile image
PMRproAmbassador

Ditto everything DL said ...

HeronNS profile image
HeronNS

Unfortunately both PMR and pred can weaken our muscles so you may have overdone things. Rather than trying to work out once you are feeling better, can you instead do some exercises which will gently strengthen the areas which have been giving you trouble at the moment? You would likely do best to see a physiotherapist, but in the absence of that there are now very good websites and videos on-line which can guide you through therapy on your own - just be very careful not to do actions which hurt. This is not the time to be working through pain!

Uglow profile image
Uglow in reply toHeronNS

I have taken 12.5 mg up from 11 mg pred how many days before I know if it works. So I can either stay on 12.5 for 10 days or go back to 11mg. Thanks

Uglow profile image
Uglow

I am waiting to see a physio but having back and pmr problems seems to confuse them. Tbh it confuses me I’m never sure what’s causing pain pmr or fracture. But I’m going to go back pred and see what happens. I’m too scared to go back to stage one of pmr. Thanks for help.

HeronNS profile image
HeronNS in reply toUglow

I have been very lucky because the physiotherapist I see had already treated a couple of people with PMR, and one of her best friends is a rheumatologist (who I guess must be one of the good ones). Before I was diagnosed I did seek physio elsewhere for my aches and pains and the repetitive exercises I was given just exacerbated the problems. They literally gave up on me and suggested massage therapy instead - which I hated. So beware of anyone who suggests repetitive strengthening exercises which become increasingly difficult. You want someone who will give you ( probably really boring) exercises which strengthen small muscles, not large ones. No resistance exercises except those where your own body provides the resistance - that is to say, no elastic bands or weights, at least not until you are recovering well from whatever the current issue may be. For my knees, for example, I find the pedal exerciser my physiotherapist suggested works very well to strengthen certain leg muscles so I'm less likely to hurt myself when I go for walks. These activities use different muscles. To help my neck the only resistance is two of my own fingers for my head to press against. It was explained to me that this is because I need to strengthen small muscles, which in fact would not be called into play if I were to use my whole hand for example. I'd be using a different set of muscles. What I'm thinking is, if the small muscles are stronger they in turn support the larger ones we use in our activities.

PMRpro profile image
PMRproAmbassador in reply toHeronNS

And why I say get a couple of plastic bottles and put a small amount of water in them for handweights - don't start with even 1lb weights, 1/4lb is plenty ...

Uglow profile image
Uglow in reply toPMRpro

Excellent thanks

Theziggy profile image
Theziggy in reply toPMRpro

You can even just use two cans/tins of beans as weights.

PMRpro profile image
PMRproAmbassador in reply toTheziggy

You can - but using water bottles means you can start with 100ml/4oz and build up slowly to over 1lb just by adding water - can't add to a can, have to find another pair!

Uglow profile image
Uglow in reply toPMRpro

Is this ok

This
PMRpro profile image
PMRproAmbassador in reply toUglow

Sorry - don't know what you mean?

Uglow profile image
Uglow in reply toPMRpro

Just do this I’llGoogle exercises lol

HeronNS profile image
HeronNS in reply toUglow

If you can lift weights over your head like that I'm impressed!

PMRpro profile image
PMRproAmbassador in reply toHeronNS

I can - as long as they are not too heavy ...

HeronNS profile image
HeronNS in reply toPMRpro

I have instructions to lift 1 lb weights as I work to maintain shoulder mobility. I only do one arm at a time! Actually, never crossed my mind to try two until this conversation.

Uglow profile image
Uglow in reply toHeronNS

I can’t 😂😂😂😂

HeronNS profile image
HeronNS in reply toPMRpro

You have to click on the picture to see the whole figure lifting weights!

PMRpro profile image
PMRproAmbassador in reply toHeronNS

Ah so ...

Uglow profile image
Uglow in reply toHeronNS

I’m going to try hypnosis too

HeronNS profile image
HeronNS in reply toUglow

Let us know how that goes! :)

PMRpro profile image
PMRproAmbassador in reply toUglow

I don't understand it to be honest - our physios here are totally on top of how to deal with PMR and other things at the same time. Some of the other problems are related to PMR but many systems don't appear to understand that. As I understand the set-up, the Leeds group has a handle on it all too.

Amkoffee profile image
Amkoffee

I believe you have one of two things possible. Either you're having a case of costochondritis or you have a strained intercostal muscle. These are the muscles that hold the rib cage together but allow the rib cage to expand when you breathe. There really is not a treatment for either of those but they are not permanent either. However in both cases it can take a couple of months to get better. Ice and heat are the best treatment for these two conditions.

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