I'm new to PMR and have been taking prednisolone 15mg for only a week. At first the results were miraculous. The pain almost disappeared and the fevers and depression too. Now I have quite a bit of pain returning although probably only 30% of what it was before. The question that I have is this. My pain is, and always has been, much worse - say 3 times worse - on my right side than my left. I am wondering if this is average or if I have an incorrect diagnosis.
Beginner: I'm new to PMR and have been taking... - PMRGCAuk
Beginner
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My right side is worse than my left too, which did not help me to get a positive diagnosis, but I had severe lower back pain on the right which I was treated for , with injections, about 6 months before I got the PMR, and just recently have developed OA in my right knee too. I also fell down the stairs injuring my right ankle when the Pred. was keeping me up at night. Some of this has been coincidental but maybe some not. ( sometimes I feel like my whole right leg is faulty!) I am just about to go and see a Bowen Therapist to treat my right thigh as it does seem disproportionately tight, tender and sore.Regarding my shoulders, when I get aches there, they are generally reasonably similar on both sides.
I think there are always individual variations which is why diagnosis is so hard.
Fingers crossed for your Bowen appointment Suzy - I do hope it works as well for you as it has for others on the forum.
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As soon as you felt better did you immediately go back to pre-PMR levels of activity to catch up on all the things you weren't able to do? If so, that is probably why you are now in pain again.
An integral part of the management of PMR is REST and PACING! Your muscles have become intolerant of acute exercise and not only don't tell you when you are doing too much but also take far longer than normal to recover. You will be able to do more in time - but only by building up the amount you do very gradually with rests in between.
The pred hasn't cured anything: PMR is caused by an underlying autoimmune disorder that causes your body to attack itself and damage tissues of various sorts. This results in inflammation and swelling which causes pain and stiffness. The pred relieves the inflammation - and so also its effects. The autoimmune disorder is still going on in the background, causing fatigue and the damage to muscles. That will, eventually, burn out and go into remission, there won't be any ongoing damage and the pain and stiffness will go away. Pred allows you to manage your illness - like pills manage high blood pressure or diabetes. The original disease is still there but the effects are under control.
As Suzy has said - there are other things that can accompany PMR which will lead to, say, your neck and one shoulder being even more painful than the other. Or your right hip has bursitis that is far worse than in the left hip. You do not walk properly when you have PMR and that can lead to muscular problems in back, neck and legs. Suzy has mentioned Bowen - several of us have gained great benefit from that. I kept going for 5 years of PMR using the services of an osteopath, a Bowen therapist, Pilates and aqua aerobics. The first two would straighten me up and then I used the other two to keep the muscles in reasonable nick until the next meltdown. They couldn't deal with the bursitis - cortisone injections were the salvation there!
It is now beginning to be realised that there is basic PMR causing generalised pain and stiffness - but there may be other things superimposed and they can cause the pain to be worse on one side than the other. One is myofascial pain syndrome which is due to trigger points formed of hard muscle fibres - as a result of concentrations of substances called cytokines, which when generally present in the body are the cause of the symptoms we call PMR.
That's so helpful. Thank you. Yes I have been so pleased to feel better that I have been rushing around like a 2-year old. I'm beginning to recognise how tired I feel after exercise.
Everybody does it - and then they or their doctor panics it isn't PMR because the pain hasn't all gone. Some people are never totally pain-free, others are fine as long as they don't do very much. It's a good excuse - I daren't use a broom or a vacuum cleaner for more than a few minutes. Actions like window cleaning are also a no-no for me.
The blood supply to the muscles is impaired so doing anything using them makes them tired faster and the lactic acid build-up takes far longer to be dispersed. Worst of all are repetitive actions or sustained ones - like washing windows or holding a phone to your ear. Both sorts can lead to far more discomfort than you would think.
You will learn what you can do - as in everything in PMR, everyone is different and what i can't do, may be fine for you.
Many thanks for the above post. Its the first time I have heard mention of a one sided effect with PMR. I also have Parkinsons, right sided symptoms mainly , and it is tempting to wonder it is npw mainly all the Parkinsons because my quads are sore and weak.in particular the right side. There's not much doubt about the PMR in my opinion because of the magic "throw away your stick" 24 hr.effect when oI start prednisone although I'm not sure the rheumy is entirely convinced. I am down to 2 mg from 15 mg over the past year and after the last 2 hr. walk I suffered for it where previously exercise hasn't seemed to make any difference. Also the inability to cope with repetition is also shared with PD. Compared with many I have been lucky if you can describe it as such with response to meds both the PD and the PMR although the PMR scenario can get me down due to aching muscles at night and not enough sleep. One theory of PD is that in some at least it is also an autoimmune disorder. I also take thyroxine for underactive thyroid, probably autoimmune as well.
My pain is mostly in my neck. I too newly diagnosed but in looking back probably had this for a couple years now, just plowed through pain. This flare up was just unbearable and I am always cold.
My eye pain is only on left side.
prednisone helps but dont like side effects. good luck!