While glibly waltzing along toward club Zero...I crashed into Stress!!
Seems we just had a discussion about the effects of stress, and I know ALL ABOUT IT!!! Therefore, it probably wouldnt happen to me...right?!?
Well, friends, i woke up last weekend with shoulder pain, which is my ‘canary in the coal mine’, (indicator of a blooming flare)!!! The pain grew into my hips, etc., and I have been whinging and bitching ever since.
We were planning a big party , with bells and whistles, and lots of people. Going to be fun, right? Someone else was in charge of food, so not much else to do, right?
Etc., Etc., Etc.,!
Three days before big party, I felt the first warning bells, ... shoulder, arm pain... not too bad, I sez, must just be moving around the furniture and reaching up for the fancy wine glasses...right?! 🤪.
Ok, two days before party, Pain still there, so I backed off on my piddly little taper schedule, and went from 1.5 up to 3 mg pred. Should be enough...right?
Not!!
Night before the party, I could hardly pull blanket up over shoulders while I was sleeping. In the early morning, I woke up to Misery that was clearly PMR expressing Herself.
Ok, sez I, time for the big guns.... ..out comes the bottle of 1 mg Pred, and I gulped 10 of those tiny little Pills.
Did it help, she asked??? Was it over??? Had I crashed???
Answer... yes, the 10 mg pred helped, as did the 7 and 5 and 4 mg doses I used in an accelerated daily taper, back to 3 mg today.
The flare Left me feeling, shipwrecked for the next 5 days, sleeping a lot, doing virtually nothing, and whinging about!
Lesson here...even the fun stuff takes a toll. I’m 5 years into this journey, and however close I think I am to the end... the game aint over till PMR sez its over 😒
Kind regards, fellow travelers, watch out for those Iceburgs⁉️ Jerri
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1Purplecrow
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No point messing about - always go to 5mg above where it happened. And when it is really going to matter - take even more the 2 days before... You can go back within a week - not even taper.
Well it still is no excuse to strangle your dog ( feeble joke). Beautiful dog!
I am flaring with you. It’s been rumbling for a while. I went by train to London, a cocktail reception hosted by the Dean of the University, then to a theatre performance by final year students, up beyond my bedtime, a walk around Bloomsbury where we were staying, a night in a strange bed. Train back to Sheffield. I am in so much pain I cried. Like I have electricity in my veins, not in a good way. So you’re right, even the good things can precipitate a flare. I am sitting on the sofa with a cup of tea, after sniping at my long suffering other half, who brought it to me and was really kind. The decorators have been and gone ( more stress). I wanted to put the room back in order, I like that sort of thing. He is putting the hundreds of books back on the shelves, after being growled at for wanting to hang on to an old fashioned ( eyesore) record player that he never uses.
This illness is a trial and no mistake. I didn’t realise how much my (interrupted )resting between activities was supporting me. I didn’t feel able to lie down while another woman painted my house - stupid.
I have never increased by that much. I cautiously pop one milligram in extremity.
I was diagnosed in March 2016 with PMR and cannot, for the moment, get below 7 mgs.
Thank you Slosh and DorsetLady. I didn’t mean to hijack your post Jerri. You just caught me at a moment when I needed to let out a wail of despair. You have my complete empathy. I hope you retrieved some joy from your party and are getting back on track now.
Ohhhhhh SheffieldJane, Bummer. Try to rest and relax ... there's time tomorrow to get the room in order.
"Ships don’t sink because of the water around them; ships sink because of the water that gets in them. Don’t let what’s happening around you get inside you and weigh you down."
So sorry to hear that...yes even nice things and treats still cause stress! Plus I always maintain the lower you get the more difficult things become, you are on the very edge of the dose you need, and need to take extra care...not less!
Sorry to hear - sounds horrid. Also flaring - strangely enough my shoulders : arms come last and they are not as so as what they are weak.
Ohhhhhh 1Purplecow.. I am so sorry to hear this! Good job you getting through it and the accelerated daily taper, back to 3 mg!
“That’s why we gotta do good things now. Make good decisions. Try to move the rudder long before the boat ever gets near the iceberg, right?” ~ Chuck Wendig, Invasive
Oh rats. Sorry you had to go through that Jerri. Sounds like you know what to do though. Thanks for sharing your story. As a relative newbie (diagnosed July 2017, started at 20mg/day, down to between 7 & 6mg with DSNS) I still wonder what's PMR pain and what's regular pain. Hearing other's stories is very helpful. Take care.
Yes KaseyP I wonder about the difference between PMR pain and 'ordinary' pain too. Finally diagnosed last July and now starting taper down to 7. Get aches in shoulders a lot and have often wondered if it's a flare or just 'pain' Decided it's just pain,for now. Love this forum for the wise words shared on it so often.
I agree Hollyseden. At this level of pred I wake up with pain in my shoulders but it goes away about an hour after I take the pred so I'm pretty sure that is PMR pain. The kind of constant pain in my knees though?? Not so sure. I think knees aren't usually so involved with PMR, but for me my usual knee pain (due to injuries and arthroscopic surgery in my youth which appears as arthritis in my 50s) went absolutely crazy (like I was ready to consider a knee replacement in June) and proceeded the shoulder pain that started my PMR by about a month. I love this forum too. It was the first place where I felt like I was really getting some answers about PMR. Thank you all of you amazing folks out there!!
My PMR pain seems to arrive without provocation, no bruises, bumps or known injury. For me, it usually does not feel like sharp pain, like that from a cut or obvious injury, but it feels like deep padded ache, think princess and the pea⁉️ It starts in my shoulders and the muscles along my shoulder ridge. Sometimes it flows down my arm to forearm muscles. The shoulder pain is followed rapidly by back muscle pain, from mid to lower back. When it progresses to this point, its time to go lie down. Usually a brief rest will ease the pain, and I return to my activity.
I do use Tylenol for some of the milder pain...it does seem to help me.
I know others have different experience and solutions...
I am getting off so easy Jerri. In fact I was out on the lake in my canoe in Hampstertown on this amazingly, gorgeous day. Thank you for this description I have not had a flare, but at times my shoulder pain has increased and that always makes me very nervous and I've increased pred at that point. I'm pretty sure I am one of the lucky ones with a very mild case. Though I know that still, I need to be careful and pay attention.
I hope you're feeling very much better soon!
As usual I will ask what dog it is. Lol. A couple of cuddles like that will give you the feel good hormone oxytocin and hopefully help the anxiety levels. 🐶🌻
The princess is a chocolate colored longhaired dachshund. rescued with her brother, Max, both aged 10, loves of my life. Coco, is an absolute diva and loves to be the center of all attention. Makes me laugh🐾🐾💜😄
Cute. Yes i love the laugh. I feed a few cornflakes to mine to hear her crunch them cos it cracks me up. I that was a person crunching with their mouth open I would feel like giving then a slap.
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