I really don't get this PMR malarkey sometimes! I've been off pred since the end of March, but all my PMR symptoms have been returning slowly (well they never really went away, as our Drs surgery messed me about lowering and upping my pred dose several times, and I only ever really had 2 weeks of total relief in the 2 years I was taking it.) I have been in denial about it really (I know, I'm very silly and not doing myself any favours letting that pesky tap drip, drip, drip 🤷) Then, I went to a funeral 2 weeks ago and had to stand for just over an hour. It was a 45 mile round trip and I haven't driven that far for a couple of years . I felt so utterly dreadful when I got back and slept for 3 hours! The last 2 weeks, I have been steadily getting worse, and worse, and last Thursday evening I got stuck half way down the stairs and could not move. Hubby managed to get me down and was ready to call an ambulance but I insisted he didn't! Spent Friday on the sofa all day. Could barely even speak. Then, woke up Saturday feeling fabulous 🎉 No pain anywhere. Couldn't believe/understand it! Like PMR didn't exist. Trotted down the stairs forwards and completely normally, instead of sideways, gripping the bannister and letting one leg down and then the other onto the same stair taking forever and yelping all the way down. Sunday, back to feeling absolutely terrible again! Have spoken to rheumy nurses this week and had bloods done. ESR almost 70 and CRP raised too, so have an appt. with consultant in 3weeks when she gets back from her hols. How can our days be so extremely different with PMR 🙈
HOW CAN THINGS BE SO DIFFERENT FROM ONE DAY TO T... - PMRGCAuk
HOW CAN THINGS BE SO DIFFERENT FROM ONE DAY TO THE NEXT!
Don’t forget pacing your activities and the sheer power of rest. Just more that a normal person would do. I find that damp humid weather has a big negative impact on pain, as does stress and worry. This does sound like the unbeatable anti-flammatory effects of Pred are indicated though.
Your history is something of a horror story with not having your PMR managed properly from the start. Your symptoms that were dismissed by that first GP telling you that they could be due to "something or nothing" did you no favours whatsoever and marked the beginning of the rocky road you've travelled on. It was her duty to persevere in finding out what was causing your pain. However, that is in the past and the most important thing now is to be seen as soon as possible by a rheumatologist who truly understands PMR. A three week wait until the rheumy returns from the holiday is a stretch considering how poorly you are right now. If you feel you can't wait that long tell us in which area you live and someone on the forum may be able to suggest a rheumy with a good reputation that you may be able to see earlier or least have a conversation with by telephone.You need someone to fight your corner and I hope you get some satisfaction very soon.
Please let us know how things proceed.
On the other hand - the rheumy should see whatever it is in all its glory and won't come up with something as inane as "it could be something or nothing"! It is obviously SOMETHING!
Exactly, which is why I wrote that Groovy.....needs a rheumy who understands PMR and that her GP was wrong in being so dismissive of her symptoms in the first place. No one should be treated in that way and duty of care was apparently ignored. What are things coming to?
i think they have always been there - especially for women where some doctors have always played the hysteria/anxiety card for many things but especially pain. You'd think it might have improved but really not ...
I guess you're right. I hadn't realised that so much of this type of disregard existed until I became a member of this forum; a sorry state of affairs!
It is also an age-related thing. We are all older - and most have little medical history pre-PMR so this is a whole new world 
Groovy by name but definitely not by nature!
Perhaps in past times 😀.
Probably secretly slightly groovy 😁
Aren’t we all? 🤣😂
Will do 👍
Would say your day of complete rest gave you a good day on Saturday…but because you felt so good, did you embrace it and do too much? Understandable if you did….
But we all get good and bad days even when no apparent illness, unfortunately with PMR the bad days can be more extreme.
As you guessed your PMR never went away, just sat there building up again, hopefully this time around you will get better treatment, and you will know what do, but perhaps more importantly what not to do.
I
Than you all for your replies ❤️ I've just never had SUCH a good day without a single gripe for a couple of years! My face was like this all day 😃🤭I asked for a blood test at the docs when I got down to zero pred as I was feeling awful and I was wanting to know if my esr etc was raised to determine whether it was the pmr or adrenals not awake yet. Was told everything was 'clear'. Patiently struggled on waiting for adrenals to start awakening. Have got to the stage I'm at now, and when I spoke to the rheumy nurse she said in an angry voice, "Well I don't know what they tested, but it wasn't your inflammation levels! That's terrible!" I was furious to say the least. I actually had a little cry after the call. Our Drs is usually excellent, but I'd put in the request for the blood test online and that was replied to by a Dr I'd not heard of before, but to think my esr etc could have been raised all this time 🤬🤬🤬 I'm comfortable enough now to wait the three weeks for my appt, but the rheumy nurse said to call back if things got worse again, and I will 💪 (I always look at that strong arm emoji and think, ooo, if only. Ha!)
At least Rheumy nurse is on the ball..but definitely a thumbs down to GP surgery...
I very often have more productive conversations and even a bit of sympathy from the nurses! They do a lot of tutting down the phone at the things that go on 🤭
Yes very true…..but they don’t think they know it all, unlike some others …..🤨
Bet they forgot and are covering up ...
This is why we should all have access to our blood test results or any results for that matter. I make allowances for the fact that the NHS is under pressure but mistakes or anything overlooked can be picked up by the patient if he/she is kept in the loop with results and I have, in the past, needed to ask for my records to be amended because of omissions or misinformation.
Yes, would probably take some pressure off if patients could access their own info and request follow-ups etc and save endless waiting etc, especially for people like us who know our disease well and know almost exactly what we need and when we need it!
Love your description of coming down the stairs sideways... showed it to my husband and he said "That's you!!!" This site is amazing at reminding us we are not alone ❤️
By the time I get half way, I can't remember if I was going up or down 😵💫
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