Physical Therapy

I agree with Paul, PT did not help me last year because the therapist was not familiar with PMR.  They want to strengthen muscles, and if you do what they tell you, you end up with bad pain in shoulders and hips.  I gave up on this, and do my own stretching for my hips in the morning before I get up.

So...just because they say they know...

However!!! I'm grateful for some things they did teach me! Like how to squat better to pick things up, though my Bowen gal corrected it a bit and I feel better doing it, and yoga tough me to press against floor and rotate thighs outward, this helps to NOT activate the PMR spots. 

And they tough me how to use my shoulders better, though I often forget and feel the pain. 

My my muscles are atrophying big time. So I'm trying to lift weights using non PMR muscles, biceps, triceps, lats, quads, ... But LESS reps! Only about 5-6 at a time. Maybe twice a day or more, but I forget. Ugh. 

Before my back hurt too much, but Bowen helped with that.

"Normal" physiotherapy that aims to strengthen muscles by repetitive actions is a no-no - the one thing that PMR ravaged muscles don't need is to be subjected to repetitive actions! The blood flow to the muscles is compromised by the narrowed inflamed blood vessels so they don't get an adequate blood supply with nutrients and, above all, oxygen so are unable to exercise without developing ischaemic pain. It is called claudication and is typified by the pain going when you stop only to return when you resume the action. In addition, the blood flow is unable to remove the waste products of the exercise - and you develop the dreaded lactate burn post exercise which the muscles can't recover from as well as they should - the after-effects of the exercise hang around for far longer and you are sore.

However, some exercise IS important in PMR as it dilates the arteries and gets the blood flowing to the muscles better and that eases the stiffness. There is currently a clinical study being done in the north of England that includes exercise targets for patients on pred for PMR which helps prevent the muscle wasting due to pred which affects some people as well as helping the PMR.

Recommendation 9 of the most recent EULAR and ACR guidelines for the management of PMR says:

"The panel conditionally recommendes an individualized exercise program for PMR patients aimed at the maintenance of muscle mass and reducing the risk of falls. 

There are no studies investigating the value of non-pharmacological therapies (e.g. physiotherapy, relaxation techniques, diets etc) in PMR and there is insufficient clinical experience on this issue to agree on a specific recommendation. Nevertheless, the panel agree on recommending an individualized exercise program ... in view of its benefit for maintaining muscle mass and function and reducing the risk of falls, especially in older persons GCs as well as in frail patients."

But you must be careful your physical therapist understands the muscle problems associated with PMR and - as the others have said - the proof of the pudding is in the eating! If they don't "get" why you are on pred, if they don't "get" that exercising to exhaustion is absolutely not the right way to approach things - vote with your feet. 

The approach taken by Anhaga's and Nick's  therapists sounds ideal but I'd suggest they are very lucky at the present. In time there may be some recommendations that physios will take notice off but at present look for one who will listen and accept that you have limitations and work with you. I haven't found one yet who really understood and I found just doing one or two reps too many left me hurting for the next few days. Walking as much as you can, climbing stairs (if you can) helps legs and you can increase it in very small amounts. I would go to a gym but here where I live you pay for individual visits and they never have a pool or spa bit - bit expensive paying full wack for 20 mins!