i wonder if anyone else has this problem? As long as I am active the pain in my arms and shoulders is bearable and sometimes not really noticeable But when I lie down for a nap or go to bed for the night I cannot find a position in which my arms and shoulders don't hurt. So much so that I am awoken by the pain and eventually give in and get up. The temperature outdoors is really challenging so I have the air conditioning on all the time when indoors but it is directed away from me so I can't blame the pain on chilled muscles.
I wonder if other people have a similar problem and if so how do you deal with it?
Hi Ricky, in the begining I was very like that. I was always up as soon as I woke as I could not stay in bed with the pain. After being on pred it made a huge difference but I still have to get up and get going when I wake up. I don't feel that pain is waking me as much though these days. What dosage of pred are you on? maybe you need more?
I think your experience is consistent with most of us afflicted with PMR. I would describe it like a snow globe. When shaken, the snow swirls about; when you stop, it all settles down. Same with our inflammation, or so it feels. Always worse when sleeping or resting. Always worse at the end of a train ride or plane flight.
What can you do? Stay active 24x7, I suppose. Nope, that won't work. I did find that taking 2-3 ibuprofen (Advil) at bedtime or in the middle of the night made mornings easier.
I'm with you on this one. I think we might need Eileen's expertise to explain but maybe something to do with the fact that cytokines are released while we sleep and these are related to the inflammation in our muscles. Hence why some have resorted to dosing with pred during the night in order to get on top of the inflammation before you rise in the morning. Of course, I might be completely wrong but at least it is perhaps partially the answer.
Hi Ricky. I was ok pain free, up until 10 days ago, I have been on 12 mg for three weeks, I don't have the hip or leg pain but both my shoulder are so stiff, I find it really difficult to dry my hair it is like my neck locks when I lift my arms. While I am busy doing households takes I can deal with it but sitting or lying down I find I can't get comfortable. I don't know whether I should increase pred back to 13 or struggle on. I also can't do the weights at the gym I just don't have the strength in my arms or shoulders. PMR is the Pitts, just when you think you have it under control it comes back and bites you.
The only comforting factori is we are not alone
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I haven't experienced what you are describing....sounds horrible. I did feel really sore on awakening for a period of time...I'd open my eyes and immediately feel like I'd just come out of a coma after being run over by a truck! So I started splitting the pred , taking 2/3 of it around 2 am .nd the rest 12 hours later. It seems to work for me, now I feel no pain upon awakening.
But if you're in pain as soon as you lie down, I'm not sure if splitting the dose or taking it early will do any good. Will be interesting to see what the experts
Sounds like you are not taking enough pred. What you describe is, I think, called gel phenomenon. It is the primary symptom of PMR for me. It simply means stiffness after period of rest. That was what was taken away by pred for me. You have to do your part by not overexercising too.
There is no virtue in trying to "manage" on too low a dose. If you try to struggle on the inflammation will build up again like a dripping tap fills a bucket and you will have a full-on flare.
You have to do your bit though - and I'd suspect household tasks AND weights in the gym is simply too much. I cannot do certain household tasks even now without being very stiff and sore.
The only time I had the type of arm and shoulder pain you're describing was pre-diagnosis. Before being diagnosed with PMR and starting on prednisone I hadn't slept in my bed for weeks. Less than 12 hours after my first dose I was sound asleep in bed with absolutely no arm or shoulder pain.
Before I eliminated the pain with Prednisone, I could not get comfortable lying down. For the four months before I got the pred I slept mostly sitting in a chair. Now with the pain under control at 7 mg of pred, I sometimes wake up at night to go to the bathroom and can not get comfortable and return to sleep. When that happens I sit in a chair with music from my iPod and fall asleep in 5 - 10 minutes. I wake up after an hour or so and get back in bed and fall asleep.
Oh dear.... that's worse than pmr...... but thank you I will check it out! I have an appointment with my rheumy next Sunday which I am dreading - I will ask her what she thinks
snow globe ...... nice one ......... and sometimes its been stuck on the shelf for a long while, is all caked up in the bottom, and needs a big shake ....
I suppose it depends how you look at it. Some of the most likley options (if it were and obviously that is far from certain) can be very well managed with other medications instead of pred. For PMR there is only pred.
I have a friend who originally was diagnosed with GCA and PMR but was totally unable to reduce her pred dose without a return of symptoms and the pred was causing all sorts of problems. A chance remark about night time pain to a new rheumatologist meant she had some different investigations done - and it turned out to be ankylosing spondylitis (AS) which has a choice of five medications to which it responds well. For the first time for years she started to feel well and have less pain. It had also been the cause of the GCA-type headaches. Another friend was told PMR originally but she was sure it was more than that - and continued her search with the assistance of a GP who was also not entirely convinced. She too has AS together with another much rarer disorder - different drugs are working far better than pred for the longer term.