Pain returns
Posted , 8 users are following.
Have had PMR for 2 1/2 years.Having reduced preds to 2.5 per day as advised have been pretty active recently, have walked a lot more than usual(painfully) and now am in a lot of pain - back, legs, neck and arms. Am only comfortable sitting or lying down - it hurts to walk or stand. Do not know what to do about my dosage or if it would make any difference. Doctors are keen for me to keep it down (and so am I) but the pain is very tiring. Any suggestions welcome!
0 likes, 15 replies
diane67131 Jaydy
Posted
Jaydy,
I'm sending you a private message.
Jaydy diane67131
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iellen32 Jaydy
Posted
I see it as a new stage of my CGA so far.
Next time seeing my Rheumy I will discuss it with him.
I used to massage my legs, arms, joints specially.
I confess I quit doing it- intend to go back today.
Stay well.
EileenH Jaydy
Posted
Then you have almost certainly reduced slightly too far and the pred dose is no longer quite enough to manage the daily new dose of inflammatory substances that are the cause of PMR symptoms. If you leave it you may find the inflammation builds up slowly and you end up with a reall full-blown flare which will mean a much higher dose and reducing again.
I'm sure you are all keen to keep the dose down - but if it isn't enough, it isn't enough and it is a bit pointless taking too little to do the job. It's a very low dose you have got to so I wouldn't worry too much about goingback up a bit. The only way to find out if it will make a difference is to try - you can take a higher dose for a few days and go straight back to 2.5mg with no problems if it doesn't help at all.
There is also the possibility it is something else - myofascial pain syndrome for example will cause similar though not identical pain. will respond a bit to higher doses of pred and then return as you get lower. It responds better to localised therapy: either steroid injections or manual release techniques that work on the trigger points that form in muscles as a result of MPS. It can result in muscle spasm in your back, especially lower back and shoulders, and can be quite excruciating.
Jaydy EileenH
Posted
EileenH Jaydy
Posted
I was told by an orthopaedic specialist that i had wear and tear in my lower spine and would have to live with it - I couldn't stand or walk for more than a few minutes without pain. The local pain clinic here in Italy recognised it for what it was: muscle spasm. My back muscles were as hard as boards. Treated with steroid shots and manual therapies it improved out of sight. Having a squint wisdom tooth out sorted the rest. Just about - I'm have twinges now, more than 3 years on but in the meantime it's been fine. i probably need a really good massage session...
Loulie Jaydy
Posted
Hi Jaydy - I am going for the arthritis in your lower back as the cause. I have arthritis in my right hip, spinal stenosis further up my spine and arthritis in my lower spine (facet joints). I find pred sorts out what I call the 'PMR pain' which is what I felt in my top half (arms, shoulders, back etc) which was so utterly ghastly. I still have a problem walking, pain in my ankles, and thighs and calf muscles and this I put down to the arthrits. Some days are better than others and I do find that on bad days taking paracetamol does actually help and takes the edge off so I can function reasonably well. Sounds like yours is very similar to mine. Good luck.
Anhaga Jaydy
Posted
If you reduced relatively recently and simultaneously have been more physically active, it could be a case of overdoing it. I think you should follow Eileen's advice to take a slightly higher dose for a few days, but also be careful to get enough rest. For every bout of activity you should have an equal amount of rest. If slowing down your activity helps you should also be able to taper your dose down a bit again, but again, as Eileen suggests, the 2.5 may simply not be enough right now. I'm about to find this out for myself, being near the end of a taper to 2,5, so I'm heeding your cautionary tale and will try to be even more careful about my activity and exposure to stress than I already am.
Juno-Irl-Dub Anhaga
Posted
Anhaga, you're at 2.5mg.Pred now. Can I ask you if you still pace yourself to ward off the tiredness? Or, at this low dose has that all gone? J
Anhaga Juno-Irl-Dub
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No the tiredness hasn't gone. I can manage quite well, but I think it's partly because I've adapted to this "new normal". What I do have to be careful of is avoiding psychological stress. I seem to bounce back from a busy day of running around doing errands, socializing, housework, appointments, etc, after a good night's sleep, but I certainly don't want two days in a row like that. And I'm really into stress avoidance although I keep an ear to the ground as I like to be well informed. I'm learning not to get emotionally invested in things any more. I think it's called denial, but that's just the way I have to be now.
Juno-Irl-Dub Anhaga
Posted
I'm really relieved to hear that Anhaga. I fly around in doing my walk, some floor exercises, shopping, some gardening and tidying, make the lunch, walk the dog - and then I'm ready to lie down - at 3.30 in the afternoon. . . . !
I somehow thought that when the Pred.gets quite low and the reduction is going ok, that the tiredness would reduce a lot also. But it's just the utter exhaustion that's gone, the tiredness remains. Like you, some days are great. . . .
Not a lot of stress in my life at present (but a huge amount before the PMR diagnosis) but I'm a chronic worrier - enough for the whole planet . . .
J
Anhaga Juno-Irl-Dub
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I can see you, Juno! Sounds like the day I had, only I kept going until the evening. I was at choir and realized at one point I had stopped singing and lost consciouslness for a few seconds. I don't think anyone noticed.
🎵
walter98524 Jaydy
Posted
IM HAVINGS THE SAME PROBLEMS AS YOU ARE. IM ON 6 MG/PRED /DAY
?BUT MY BIGGEST PROBLEM IS IN MY LEGS, FRO MY MIPS TO MY ANKELS.
?IT FEELS LIKE IM CARRING 2 HUNDRED POUNDS ON MY BACK , ONLY WHEN I WALK,WHEN I SIT OR LYING DOWN ITS OK.
Jaydy walter98524
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EileenH walter98524
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Walter and Jaydy:
If such pain is due to PMR it will only improve when you are taking enough pred - just because you have had PMR for 2 years doesn't equate to needing a lower dose.You need the dose that is enough to manage you current disease activity - and time has nothing to do with that. I've had PMR for over 12 years and have been on pred for 7 - I'm currently on 10mg because of a flare.
However - there is something at the back of my mind about leg problems that improve with lying or sitting but I can't remember what it is. You need to see a specialist about it and get a proper answer. It may be a higher dose of pred - or it might be something else.