i am getting very frustrated, depressed anxious, etc, have told my story before re temporary diagnosis of pmr , since oct 12, and being given 40 mg pred at that time by gp, which naturally took all pain away within hrs, tapered me to 30 within 2 wks, then saw rheumy, who said so many issues going on with me,sed rate not typical for pmr, said gp started to high, no baseline bloodwork for her to make diagnosis, said can,t be sure pmr, re previous existing issues ie, back problems, etc, tapered me to 20 mg about 17 days ago, then a week ago tomorrow, so 7 days ago, pain came back shoulders, buttocks, hamstrings etc,called rhemy bout 4 days ago, told her what happened, she suggested i did too much activity day before, caused flare, stay on 20, see how i felt after wkend, which is today, well yesterday am, not too bad, and up at 4:30, all day buttocks and hamstrings noticeable pain, but last night, bed at 11:15, up at 1:30 shoulder pain, lay back down, up at 2 :30 am , still up with painful shoulder, i am frustrated, anxious, depressed, what is going on? i didn,t do too much physical yesterday,little laundry, did couple jars pickles, that,s bout it, i am getting to my wits end with this, although i know other people have suffered much longer, but the scary thing is, rheumy cant confirm diagnosis really, and i don,t like that, and also said, nothing i can do about not sleeping ? well that,s wearing me out, and i,m sure doesn,t help symptons, anyone else there have similar story, advice please, i,d like to ask my gp for another referral, to a top rheumy, maybe out of one of our top hospitals in T.O., but afraid of his response, they don,t like doing that,
It doesn't matter what rheumy you see - they will have the same problem. Your GP clouded the view with the high dose and your rheumy now has to work round it. Autoimmune disorders are very difficult to diagnose and it can take time. It took me 5 years to get a diagnosis because I had no abnormal blood results - but 15mg of pred worked very well for me.
You will have to be patient I'm afraid. And frankly - if you stop and think what you did with even just a bit of laundry and making a few jars of pickles then I suspect you will realise you still overdid it. I couldn't do ironing for more than 5 mins at a time, I have a fully automatic washing machine - but putting the dry washing into it was all I could do at once. It's as well it takes a couple of hours for it to do a full cycle! And the chopping and actions required for cooking nearly finished me off - I changed my household habits a LOT! I still don't do housework, even using the vacuum cleaner for 10 mins is enough.
oh yes, i am very upset at my gp not doing any baseline blood work prior to pred dose of 40 mg, he admitted he was not the expert, but felt it was very likely from symptons i had pmr, and it did relieve the pain at that time within few hrs, just posted another new discussion, probably repeating myself, but Eileen, i went from 40 every few days down 5 mg, to 20 mg , now 17 days ago, but what i am so disillusioned about is, i was not too bad first 9 days of pred, then boom, symptons ret,d, and still have, yes i did a little too much day before most recent flare, but rheumy said stay at 20 til after wkend with is today, so 18 days, and see how i felt, she isn,t keen on increasing, now i,m down to 20, and neither am i, guess im finding hard to believe that a few little activities can cause such a flare next day,hard to believe the little i did yesterday caused me to be up at 2:30 am today, with hurting shoulders, and buttocks,
Until you have the pain under control, almost any activity can put you down for a few days. You have to rest a lot. Your body is talking to you. Then after the pain is under control you add activities back very slowly. It is hard to do for those of us who are use to doing so much or pretty much everything for our family and others, but now you have to take care of you.
Robby has said it all really - this is a whole new normal! It is also probable that the speed your reduced at didn't help in the short-term - so you need to rest even more and wait it all out. I really do think that part of what your rheumy wants to see is how you are with what is a more normal dose for PMR. As I have said before, there are several things that can cause the symptoms we call PMR so in that sense your GP was right. But the others might also respond to that sort of dose of pred.
And I do wonder if taking say15mg in the morning and the other 5mg in the evening might help sort the overnight pain - it is worth trying for a few days just to see.
I can't carry a shopping bag from the car to the house without sore shoulders! It really doesn't take much!
i guess im just too impatient, and this is the first serious condition i have ever had, so been lucky i guess, until now at 68,but part of my frustration is, i guess i don,t have enough confidence in my dr,s, and feel they weren,t or aren,t thorough enough, and don,t answer my concerns, at least trying to put me at ease somewhat through this , i have to call rheumy today, i will ask about breaking up dose, morning and night, thanks Eileen
Cheryl you sound like me when I first hurt my back. I would try to do too much and the next day I would suffer so much. And I would repeat that behavior over and over again until finally I didn't stop hurting. Now that's my cross to bear. You've got a disease now that your going to have to come to accept. It's going to limit your life. With any luck it will burn out sooner rather than later. Some people'say PMR burn out in a year or two other people have it for a lifetime. You might consider seeing a counselor for a few visits just till you can get on top of this mentally. Hugs
thanks amkoffee, it,s just that i have been pretty active, and have 3 families i help out with kids, and just had new great grandaughter, now 5 mos, old, and now i find, i can,t even manage to visit them, or take my grandkids out, theyre 9,12, 14 and 14, was my 20 yr old grandaugter that had baby in june, and that is not a good situation, so i have been very upset and stressed with that for some time as well, anyway, i,ll try take everyone, advice, and limit my activity, until this gets under control, thanks again
amkoffee really has hit the nail on the head - you are fighting this and expending energy you can use better elsewhere and getting all het up about it. That in turn is making your tense your muscles as well as overdoing it.
Most of us had been pretty active pre-PMR, we really do understand how difficult it is. It is a bereavement - you have lost the life you had. amkoffee's suggestion of counselling is a good one - is there any chance of that?
well maybe , i,ll wait it out for bit though, another week or so,see what rheumy says today bout dosage, and splitting it
I think the most important thing you can do is pay close attention to your body, and what it says. Rheumies and other docs are fine, but you will find that listening to your body can sometimes do even more for you than they can. You will need to accept that PMR requires great patience and all the calm nerves you can gather. Meantime, all good wishes and hopes for the future--
Barbara
Cheryl, if you had broken your leg, or if you were recovering from a bout of flu or pneumonia, would you or your family be expecting you to do anything except rest and recover? Well, PMR, or whatever it is you have, is invisible, but you aren't well. The sooner you accept that you are ill and your body needs time and opportunity to recover, the better things will go for you. It is most unfortunate that you have to deal with the error of being prescribed too high an initial dose of pred, but that too will pass. And willing yourself to be further along in the process of recovery isn't going to speed things up. In fact, as others here have said, learning to accept this difficult journey will actually make it easier. Take the opportunity to read a book you've not had time to get to before. Do you have any sedentary hobbies, like embroidery or knitting? Choose that activity as opposed to having to stand at a stove or chase a little child.
I promise you, a few months from now you will look back on this time and wonder why you were so frantic.
ok anhaga, thank you, i,ll try to keep reminding myself to be patient, and accept what is happening,i am an anxious type of person to begin with, so i, try to work on all that,,
Believe me, I do understand. As Eileen said, a lot of us were very like you at the beginning and feeling disbelief that we could be brought up so short in what had been an active life. There is a philosophy that sometimes illness comes to us for a reason, to give us the time and space to rediscover our true selves.
❤