Have been feeling quite well for a few weeks since following advice on here to stick on the dose I last felt ok on - 3mg per day. I had tried to get lower but started to get some arm and shoulder pain again ( no where near the original pains though).
At my last visit to Dr she said I had become "pain aware"! Yes I know I am, same as other PMR sufferers I think.
My question is - is it common for PMR pains to move about? 2 weeks ago I was waking to under arm pain in my right side which went after I had been up and about for a few hours each day; the last 2 weeks I have woken with a stiff neck - again on the right side and easing after being up for a few hours. Apart from these niggles lots of energy when I get going - still have a slow start to the day.
Don't want to go to Dr at the moment as soon we will be going abroad for a month and I don't want to invalidate or complicate my holiday insurance if she sends me for tests or further examinations! Apparently they expect you to inform them of anything going on which is new...... I expect so they can avoid paying out in the event of problems developing.
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suzieh
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Yes Suzie. My original severe pain and stiffness was to my upper arms and shoulders. Nine months down the line I'm at 5mgs but I have morning and evening aches and pains mostly in my hips/bottom and thighs, but some achiness in arms. I find it's worse when I'm tired or get up in the night. Sometimes its painful to lie on one side or another. Work days are definitely worse than days at home. Because it moves around I try to keep track of it so I can describe it at my next appointment. The trouble is every time I see my rheumatologist I've gone through a few good days so when he asks how I am, I say 'feeling much better thanks'. I must write the bad days down. Like you, the pain is nowhere near what it was like at the beginning. Angela.
Never admit to feeling well! Always take a diary of the bad days with you.
But some of what you are describing sounds like bursitis - especially the pain lying on one side or other. I think that was actually one of the first things I noticed with the PMR - it was terribly uncomfortable to lie on my side doing Pilates. It never went until I had local cortisone injections - and other pain went too after them. I wasn't walking properly and it was putting strain on my back muscles - physio and pain specialist said the same.
If your GP had ever had PMR she might understand why we are pain aware! Of course we are when reducing - we are looking for the lowest dose that manages the symptoms so you have to be aware of what's happening. The group in Leeds are very positive about that aspect - it means we are better at knowing if it is the PMR that isn't being controlled or something else. And they know a LOT about PMR there - they listen to their patients!
This is what happened to me over the last few months - at 5mg I was sorely tempted to stick there for a long time but felt so well after a few months I decided to try another 1mg. Great - no problems and so I tried to get to 3mg. It too was fine for about 2 months but then I carried a heavy bag and I could feel it very slightly in my biceps and it didn't go away. Then I had a stinking cold about 5 weeks ago - and the bicep pain got worse and was there all day, especially when I was typing. Nothing else at all - no real stiffness, just felt a bit tired when out for a walk when hills were involved. So I took 1x10mg and a few times 5mg and have settled back to 4mg and the arm pain has all gone. My rheumy-experienced GP is sure it was that cold that upset the apple cart - she really is into the idea of VERY slow reduction, she even thinks my reduction plan is fast!
How wonderful that your doctor can feel your pain and judge whether it is real or you are just "pain aware". Sorry for the heavy sarcasm but really !! My experience is of becoming desensitised. It is only when I took Gabapentin in the unlikely but successful attempt to spare my room mate the coughing that was keeping her but not me awake on holiday that I had a week of proper nights' sleep for a whole week and realised how much discomfort I have ben putting up wish for months..
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