Is it posture? Cold? A flare? Or something else? - PMRGCAuk

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Is it posture? Cold? A flare? Or something else?

Nextoneplease profile image
ā€¢20 Replies

Hi lovely people šŸ˜Š

I am sitting here feeling very weak and emotional, I think due to my recent and ongoing drop to 7.5mg. Iā€™m in week 2 of a three week taper from 8mg to 7.5mg.

Butā€¦.as well as the deadly fatigue, I also have some pain issues. Iā€™m trying to sort out whether they are PMR related, or due to something else.

Two days ago, despite exhaustion, I happily dragged myself to a concert with my husband. We went by taxi so I really only had to walk a few hundred yards here and there. The church venue had comfortable seats and background heating. Butā€¦.after about an hour, I felt a terrific, painful burning sensation from my right shoulder, down my arm, to my wrist and fingers. I realised too late that at home I have an armrest, here there was none. When I got home, I just about managed to pen the front door but struggled a bit turning the key (even though I have a wing adapter on it).

since then, the pain is less, but I am still very stiff, especially in wrist and shoulder. Itā€™s hard to drink from a cup, hold a fork, butter breadā€¦..as as for folding laundry etc! Just not on.

I know I have osteoarthritis, so it could be that, exacerbated by the different seating position on Wednesday at the concert. On the other hand, could I be risking a PMR flare as a result of my ongoing reduction to 7.5?

I have a physio appointment in two weeks time, and also a GP telephone appointment, but if it is a flare, it could have got out of control by thenā€¦.

What do you think?Should I just wrap myself in cotton wool and sit it outā€¦.or go back up to 8mgā€¦.or even a bit higher for a few days? I really donā€™t want to endanger the progress Iā€™ve made and I felt fine on 8mg.

Thanks in advance for any suggestions šŸ˜Š

Nextoneplease xx

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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

it might be wise to abandon the taper for the moment and return to 8mgā€¦ that may well be enough to stop things getting worse. You will know within 5-7 days, so reappraise the situation then, unless it gets considerably worse in the meantime. If it does, then you may need to treat as a flare, but come back and report and we can advise accordingly.

If itā€™s not PMR, have you tried painkillers - either oral or in topical form?

Nextoneplease profile image
Nextonepleaseā€¢ in reply toDorsetLady

Thank you DL šŸ˜Š

Painkillers help a little with pain, but not with stiffness and immobility. Iā€™ve used ibuprofen gel, paracetamol and cocodamol.

I will do as you suggest and stay at 8mg for now, disappointing as that is. I have a car trip of 90 mins tomorrow to see a cousin whoā€™s had a stroke (I wonā€™t be driving but itā€™s all more stress) and also a bit of childcare and a planned cinema trip next week, to see Tar. Phoned my choir today about the lyrics they donā€™t provide, and found myself getting very emotional. Need to gently put on the brakesā€¦.šŸ¤¦ā€ā™€ļø

If I feel better after a week do you think I should start week one of the taper again?

Many thanks šŸ’xx

DorsetLady profile image
DorsetLadyPMRGCAuk volunteerā€¢ in reply toNextoneplease

I would give it longer than a weekā€¦ as you say much going on at the momentā€¦ so apply the brakes -gently. ā€¦and yes restart from week 1 when, and only when you feel up to it.

Good luck.

PMRpro profile image
PMRproAmbassador

I'd certainly abandon the taper for now as DL says. Bit strange that - if it had been your left arm I'd have told you off for ignoring it!!!

Nextoneplease profile image
Nextonepleaseā€¢ in reply toPMRpro

Thank you PMRpro šŸ˜Š

See my reply to DL above. Yes, it has felt weird, could be a mixture of sitting awkwardly, adapting to a taper, arthritis, cold weatherā€¦.and lack of emotional resilience to discomfort due to adrenals not being efficientā€¦?

Anyway, no, not my left arm!

Many thanks šŸ¤—xx

Bcol profile image
Bcol

Agree with DL and maybe think about extending your tapering schedule to more than three weeks. Possibly, try every five weeks and see how it goes, it may work out quicker in the long run.

Nextoneplease profile image
Nextonepleaseā€¢ in reply toBcol

Thank you Bcol šŸ˜Š

Have abandoned the taper for a couple of weeks and as you say, may do a longer one when I restart. Althoughā€¦.if the GP/ physio/ general consensus is that itā€™s arthritis, Iā€™m not quite sure what Iā€™ll doā€¦

Btw have sorted out lyrics for choirā€¦.emailed them to my friend in Bristol who is printing them and posting to me! The things we doā€¦..šŸ˜Šxx

Oboes22 profile image
Oboes22

I thought I was having a flare a few weeks ago and increased from 5mg to 7mg for 8 days and felt good then went back to 5mg. Then the pain started again gradually becoming worse. GP advised going to 6 or even 7 for a month and then taper very very slowly again. My instinct said 7mg and now the pain is easing. Iā€™ve been here twice before and understand how you feel. Itā€™s a horrendous journey we are on. Take care.

Nextoneplease profile image
Nextonepleaseā€¢ in reply toOboes22

Thank you Oboes šŸ˜Š

Itā€™s so difficult to judge, isnā€™t it? Iā€™m on 8mg today, feeling better and will stay on this dose for at least a couple of weeks. Itā€™s disappointing but also we canā€™t really relax as you can with many other meds, because weā€™re constantly trying to adjust the dose. Anyway onwards and upwardsā€¦

Good luck and thanks again xx

Zappata profile image
Zappata

I suffer terribly from shoulder and arm pain but it is definitely made worse by sitting in a draught. Was the church draughty? I drive my family mad trying to eliminate draughts!

Nextoneplease profile image
Nextonepleaseā€¢ in reply toZappata

Hi Zappata šŸ˜Š

This is interesting. Do you know what causes your shoulder and arm pain? Iā€™m leaning to the view that mine is mainly arthritis (what kind Iā€™m not yet sure)ā€¦.and yes, it is definitely made worse by draughts. I didnā€™t notice that the church was particularly draughty, but it was a very cold night and there was no one sitting to my right to keep me warm! At home the design of the sofa both has an armrest and a bit of a wingback which does keep draughts offā€¦.

Thanks and good luck ā˜˜ļøxx

Zappata profile image
Zappataā€¢ in reply toNextoneplease

HiI have suffered shoulder and upper arm pain for years and always put it down to overuse from computer work, gardening,four kids etc but now that I am on pred it definitely seems to help them so I wonder if I have PMR but it's never been diagnosed, only GCA. Draughts are lethal but hard to eliminate aren't they :(

Purplecrow profile image
Purplecrow

I,too, learned that riding in a car without comfortable armrests, will surely reward me with shoulder, elbow, and upper back pain . I now travel with a pillow to support my shoulders, arms, etc. pain lasts week to 10 days. Occasionally I will take extrac5 mg pred, to head off the worst of the pain.

Nextoneplease profile image
Nextonepleaseā€¢ in reply toPurplecrow

Interesting Purplecrow, thank you šŸ˜Š

Think I will definitely need to pay more attention to posture, and will also see what the physio says on 15th. Meanwhile Iā€™ve gone back up to 8mg and my shoulder and arm seem to be settling down (only minor niggles now šŸ¤ž). But, my wrist has lost some mobility and my hand too - another one for the physio methinks!

Thanks again and all the best šŸ˜Šxx

Nextoneplease profile image
Nextoneplease

Just a quick update. It seems I do need 8mg at the moment as my pain and stiffness have gradually subsided since last week. Still have the osteo pain but since PMR has settled Iā€™m clearer on the difference between the two.

Have had a very hectic week, in A&E for ages with daughter who was thought to have gall bladder infection (but didnā€™t). And I managed it šŸ‘Surprised myself actually. Thank goodness Iā€™d gone up from 7.5mg, that 0.5mg made a real difference.

Will stick at 8 for a few weeks before attempting a new, slower, taper.

Many thanks all šŸ˜ŠNextoneplease xx

DorsetLady profile image
DorsetLadyPMRGCAuk volunteerā€¢ in reply toNextoneplease

Good to hear the extra helped- hope your daughter is okay ā€¦

Nextoneplease profile image
Nextonepleaseā€¢ in reply toDorsetLady

Thank you DL X

Nextoneplease profile image
Nextonepleaseā€¢ in reply toDorsetLady

sheā€™s still quite unwell and having tests but at least not in A&E x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteerā€¢ in reply toNextoneplease

Hope she soon improves stressful for you-so do keep an eye on yourself

PMRpro profile image
PMRproAmbassadorā€¢ in reply toNextoneplease

Which is progress!!!!!

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