Sorry i am being a bit lazy as there are probably some posts on this subject, but i would welcome a view or two.
Currently on 10 mg pred, down from 15mg which started in July, following a PMR diagnosis.
Seem to be ok most of the time. 'Foggy' head at intervals and occasional eyesight shimmer (technical medical terms !) but i think that is down to too much screen time as i am working full time still. Probably need to reduce alcohol and nicotine intake and i feel that an eye test would also be time well spent. Optician can also think about a possible 'occular migraine' incident on Christmas Eve which some of you were kind enough to help with.
However, my question is this.
When i am in pain this is exclusively in muscles in both upper arms. I think i could probably isolate it to a specific muscle each side in fact. Most days this is a very mild ache which is triggered by specific actions when lifting my arm and pushing away from my body, but occasionally i wake up at 3.00 in the morning in serious agony, unable to move my arms at all. No idea what triggers this. Might be once every week or ten days at present.
It occurs to me that such a specific muscle problem might be addressed with steroid injections direct into the problem area ? Or is this too simplistic ?
I am self medicating pred levels and will probably start a 1/2 mg drop every month from 1st Feb. I have no meaningful dialogue with my GP but i can play my private health insurance joker at any time to see a specialist.
Apropos nothing in particular, i have just had to cancel my golf club January subscription renewal, after 27 years, which has seriously p.....ed me off. So i suppose i am still looking for a quick way out of this disaster. Yes....optimistic...i know.
Best wishes to all
Nick
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NickWarwick
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Can you recall what dose you were on when arm pains started? And does it come on the day after you’ve done something specific? Working on a PC long term is probably not helping - not that you can change that I guess.
My advice would to try an increase of 1 or 2mg initially and see if that helps....rather than go down the injection route.
Dropping from 15mg to 10mg within 6 months is reasonably swift- you may just be teetering on the edge of the dose being sufficient and not quite ...so a slight increase in activity (yours) is enough to tip the balance.
Winter is difficult enough, add in everything else at the moment - so I would also put a hold on further decreases for a month or two.
As for your golf, you will get back to it one day, but no-one’s playing at the moment - so save your pennies (haha you wish!) for later.
Sorry - no quick way out.... and yes a trip to opticians would be sensible.
I have always had mild aches and pains all the way through this. So to me the fact that it is isolated to arms is a positive as opposed to a backward step.
I definitely have problems on the second day after anything vaguely strenuous. But that would be not strenuous at all if i had been doing it 6 months ago ! So perhaps a couple of hours decorating, or hitting a few balls at the driving range, or example. Strange that the effect is delayed for 36-48 hours though.
A complete guess but i think the 3.00 am wake up mess might be linked to alcohol. So three beers in the evening as opposed to two. But the reaction seems extreme. Maybe diet. Who knows ?
Maybe its just a sh..ty disease that nobody understands.
In a karmic sense i must have done something pretty bad in a previous life
"Maybe its just a sh..ty disease that nobody understands."...... hit the nail on the head!
Could be DOMS - which PMR sufferers are more prone to.
(Delayed onset muscle soreness (DOMS) is the pain and stiffness felt in muscles several hours to days after unaccustomed or strenuous exercise. The soreness is felt most strongly 24 to 72 hours after the exercise. It is thought to be caused by eccentric (lengthening) exercise, which causes small-scale damage (microtrauma) to the muscle fibers.
3am waking - could alcohol related... helps to get to sleep sometimes, but doesn't necessarily mean a good nights sleep...but you're old enough to make up your own mind about your intake. .. but also likely to be steroid induced sleep disturbance.
Shouldn't worry about previous life/lives...can't do anything about that - life's difficult enough worrying about current one.
....true, but also too young to drink (well legally anyway!) - and TBH being 14 at the moment is not much fun - have g/daughter 14, g/son - 13 who are finding life v.difficult - as is dad also working 12hours (most days) from home.
Hi, I'll throw in my penny worth for what it's worth!
Most of the six years I've been with PMR, the pain has always been in my upper arms, after the initial diagnosis. The symptoms you describe are typical PMR to me, and it does seem that you've gone down too low on the pred. Even now, I can still feel some aches at the top of my left arm, but on the right it is completely clear.
I'm sure to have said it before, though maybe not to you, but the management of PMR requires patience, and then more patience, and then more patience again! I know all about muscle strength loss, and leave it to my other half now to carry in the shopping.
Also, I'm sure being at work daily doesn't help. Fortunately, I had retired when PMR struck.
I just had a long session with my physio working on the bicep and deltoid muscles in my left arm which has been causing cramp in the morning when I wake up after lying on that side. She went straight to the bits that hurt without me saying exactly where - and said it was all the trigger points or attachments that were "sticky".
These attachments are what are inflamed in PMR and myofascial pain syndrome - and that is what hurts. They are particularly likely to hurt in PMR - it goes for those weak spots and while you probably didn't notice it pre-PMR you will now.
Any repetitive or sustained action will go for it if you do too much - they are poison in PMR. First you probably need some work on the sticky bits to let the tight/spasmed muscles relax a bit and then you may be able to start very gently with exercises to build them up again and prevent the problem redeveloping - though I find it a recurrent evil I fear.
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