My History: My onset was probably in January 2021 when I couldn't build past stiffness after a 1 hour cross country ski to my typical 2+ hour ski. Over summer it got worse; I dropped all exercise and most gardening in response to burning (nerve endings?) and sore shoulder tips along with never-before-experienced stiffness at front of hips and back of knees which was diagnosed at PMR in July by my doctor. An already scheduled Aug foot operation and anti-inflammatory diet kept me immobile and maybe curbed the inflammation level before my initial test for PMR at 30mg prednisone in early September. Fortunately, the post-operation sore foot kept me from my usual impulse to rapidly increase exercise, too. Now I am slowly tapering from 17.5 to 15mg with no soreness or stiffness at front of hips and back of knees but frequent burning shoulder tips. I've been able to build up to 40 minute slow bike, 1/2 hour walk and lots of vegetable chopping for my anti-inflammatory diet on most days with almost no hip/knee stiffness and infrequent shoulder muscle soreness. But now the rapidly approaching snow season in Alaska and my addiction to long bouts of cross-country skate skiing are calling me. Noticing that most posts on this site talk about pain symptoms, I'm wondering if I am using the appropriate symptoms for my tapering.
My Question: Is the symptom of burning at my shoulder tips that I've been using the appropriate symptom for judging my taper and amount of exercise? Should I instead be watching for sore shoulder muscles with less Prednisone or with moderate increase in use (e.g. after increasing bike ride by a few minutes or trying 10 "wall pushups" while standing a foot or two from wall or countertop and bending and extending elbows)? Or should I watch for return of the unique symptoms of the sore front of hips and back of knees which finally drove me to the doctor and the initial PMR diagnosis? In short, could I be safely tapering faster which might also help stem the alarming rate of weight gain that will also undoubtedly affect the fit of my skis and my skiing?
Thank you to all you contributors and moderators!!! I really appreciate how much I trust the guidance at this website--especially on tapering. It is so immediately available when it has taken so long to get initial appointment with rheumatologist later this month.
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wil3y
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I don't know if it's relevant to your symptom but pred can weaken muscles and I note you mention activities which use your arms and therefore shoulders. Try the usual things for relieving muscle strain, and go a bit easier on yourself. If that doesn't help reconsider the pred taper possibility. Exercise good, but we do need to be more careful than we used to be, before PMR and pred.
Do invest in a little chopping machine to prepare your vegetables, they are quite inexpensive and that task puts a surprising stress on shoulder, arm, wrist and finger muscles. You are clearly a person who is quite driven as regards physical activity. You are probably doing more than you even admit to yourself. I broke my shoulder before the onset of PMR and pain at the site of the old injury would herald a potential flare. If I didn’t halt the taper and curtail my activities the symptoms would spread. Rest and pacing activity is as important as a careful taper. Unlike arthritis, complete rest is all that will do for PMR sometimes. A spell of being immobile was probably a good thing. I can imagine how tantalising the approach of the snow season is for a keen skier. Perhaps PMRPro will spot this and offer some tips. I know she was a skier at the beginning of this illness. A low carb diet ( quite a strict one) helps with the weight gain and walking on the flat is a good exercise amongst others like Pilates, swimming and gentle yoga. There is really no rushing PMR. Trying to do so just prolongs the agony. I hope you get a good Rheumatologist. They do vary. Acceptance, patience and discipline are the qualities you need to get through this. Torture for some of us initially, I know. Wishing you a smooth journey with no big flares.
All this is covered in much more depth in the FAQs section of the forum.
Thank you for this SheffieldJane 😊A chopping machine sounds like just the ticket for me - I have a food processor but it’s too big and heavy….any suggestions?
Btw I also broke my right shoulder about 15 years ago and that is always the focus for the onset of PMR pain - well, that and my right wrist, which I also broke! x
PS Hope the Christmas preparations are going well 😊
I think I got ours from Lakeland ( I love that store) it cost about £20.00. I also got a rechargeable peeler that is great for root veg and preparing soups that really suit my temperamental digestive system. I am really prepared Christmas gift wise. There are postage delays for abroad due to Covid and backlogs at ports etc. My middle daughter just said don’t overdo it mum, the gift is to see you. Oh dear! 4 of them coming for Christmas from Australia and of course Santa has to come here!
As a downhill skier who continued with moderate skiing with PMR both before and after being put on pred - I have to say I would counsel some reticence on cross-country skiing! The massive amount of shoulder use would be very likely to cause trouble I think.
It is very common for PMR to seek out any weak spots from previous injury. I would suspect that your shoulder pain is inflammation in the attachments at the end of the collar bones which is often seen in PMR.
has an interesting series of scans in Fig 5 under "Coincidence of polymyalgia rheumatica and giant-cell arteritis", ranging from GCA on the left to PMR on the right with an overlap on the way. You will see that the shoulders are highlighted anywhere PMR is a feature showing the presence of inflammation.
Sheffield Jane’s advice cannot be bettered imho: “Acceptance, patience and discipline are the qualities you need to get through this.”
My frustration in the changes I have had to make due to PMR is in my ‘name’ - it could just as well have been ‘Tabletennisplease’. As well as a full yacht racing calendar, I was playing serious table tennis 4/5 days each week, participating in league and helping to run a junior group. too. Competive TT makes explosive demands on many muscle groups and yacht racing often involves long days of effort. TT has had to stop (despite having just purchased a £100+ bat!) and I doubt, given my age and no play through lockdown, that I will play again. I have managed a little non- race gentle sailing - BUT I overdid things a few weeks ago and in my fatigue didn’t notice the boom swinging over and it hit me on the head…. Some days later I was in A&E having felt very ill with pains in neck and head etc. All clear thankfully but as a kind member on here commented: “it was probably PMR reminding you who is in charge” - which I found challenging but so helpful.
‘Acceptance, patience and discipline are the qualities you need to get through this.’ I admit that I have not scored top marks in any of these particular areas of spiritual challenge throughout my life - so not easy! One ‘tool’ that has aided me in this challenge has been and is the wise and kind guidance, encouragement and inspiration of folks on this Forum.
I hope you can find a way to enjoy the great cold winter outdoors! Brrrr..
For months and months before diagnosis I had a weird sensation in my right shoulder, like an itch I could not get rid of near the bottom of the shoulder blade
Once I was diagnosed with PMR and had been on Preds for a while I noticed that the sensation disappeared
My shoulders are my monitor of my pain levels, unfortunately there is a general mild ache in them most mornings, although last week they finally settled down. Like you I broke one of my shoulders (skiing), in my case the left shoulder and this is the one thing that generally doesn’t disappear but hey! The pain is so minimal compared to what I had before the Preds I can cope with it.
I do not think I would want to have to use my shoulders to the extent you need to when skiing, well poling along a flat piece of ground, for a while yet, at this stage in my progress although I would dearly love to go skiing again and enjoy the mountains once more
Good luck with your progress through this weird and ‘wonderful’ condition
I am not, by any means, a technical support for you, however I have gone through GCA and PMR and now am down to 2.5 mg/day.You are concerned with pains here and there and I would only suggest you watch this interview with Professor Dasgupta, an expert in these conditions.
I found his words very sensible and you might gain some insights into PMR.
Thank you to all of you who responded. After watching the Gupta video I wonder if the PMR diagnosis is correct. It sounds like burning may or may not be a good indicator. While waiting for the next month for my first rheumatologist appointment, I will back off on exercise involving shoulders and see how the taper and shoulder symptoms go.
My shoulder has been troubling me lately and to my dismay have learned the hard way that using my Nordic poles for too long means it takes three days to recover.
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