Polymyalgia and walking difficulties

I found that stretching, particularly the calf muscles, really helps. You can google specific exercises to stretch those muscles...before and after exercise! Hope this helps.

Hi ann. I have had PMR for 2 years and started off on 15mg like you but had to go to 20mg within 2 weeks. You may be having problems with leg muscles due to the inflammation causing a lack of oxygen to the bloodstream as it causes the vessels to shrink, so they tend to feel heavy. This affects me when going up hills and I also get breathless. Hopefully others will advise in more detail but as far as I know its all part of PMR and preds.

Ann, if you have been untreated that long and in so much pain for that many months the PMR has caused severe body deconditioning. Reasonable exercise and gentle stretches can minimize this. 

I find, even now, with total pain relief from prednisone, if I hadn't done an activity for a long time I can be achy for a bit afterwards. Yesterday I drove a round trip of 160 miles to plant flowers on my parents' grave. This morning my rear is sore but this is different from the hip pain of PMR.

I think it is fair to say that many of us can identify with not being able to walk at any decent pace and a lot of us find walking up a slope very hard work - both in terms of fatigue and discomfort in back and legs. Some people never really get rid of the hip stiffness either and that can lead to a very typical hobbling gait! I found that the general pain and stiffness faded very quickly - I went from being unable to walk downstairs normally, just like a toddler, one step at a time, and having to crawl back up on hands and knees to doing both like a healthy adult in 6 hours! The hip pain took months. Years later I still can't run up stairs though!

Do you still have any low back pain/discomfort? Or hip pain deep in your groin/radiating down the outside of your thigh? These can be signs of some things that are often found alongside PMR but aren't directly PMR - although the hip problem is trochanteric bursitis and may be due to the same cause as the muscle problems in PMR. It will fade with oral steroids with time, but tends to take longer than the muscle pain. However, it often responds better to local steroid injections which provide a more targetted anti-inflammatory effect.

The low back pain/discomfort can often be due to something called myofascial pain syndrome (MPS) which is caused by the same inflammatory substances as PMR except that in PMR they are what is called "systemic", or all through the body, and in MPS the substances form concentrations in muscles and can be felt as hard knots of muscle fibres. These so-called "trigger points" are often found in pairs on either side of the spine, in the shoulder muscles, about rib level and in the lower back about where the baby's dimples are. They may irritate nerves that run close by and cause referred pain into the appropriate areas: in the low back it can be the sciatic nerve and cause buttock and thigh pain along the line of the sciatic nerve. This also fades eventually at higher doses of pred unless it is very bad but may return as the dose reduces. It also responds better to injected steroids and manual techniques done by physiotherapists if you find one who knows what theya re doing (easiersaid than done though). And quite a few patients have benefitted from something called Bowen therapy - it doesn't always work but for some of us it has been a miracle.

Hi Ann and welcome to the forum although we're naturally always sorry to hear of yet another person diagnosed with PMR.

Being unable to walk at your normal speed or uphill without problems is not at all surprising in these early days.  The good news is that it sounds as though you have had the perfect response to your 15mg steroid starting dose and are out of pain - only a very lucky few find that ALL their pain resolves.  The important lesson to learn here is that just because your pain has resolved, it doesn't mean that your PMR is cured.  The steroids are just damping down the inflammation that causes the pain until PMR goes into remission and that can take anything from two years upwards.  It is now essential that you remain on your starting dose for at least 4 weeks before trying a reduction, and that reduction should preferably be by no more than 10%, although a few lucky people do find that they can successfully manage to reduce to 12.5mg.  It's very much a case of trial and error.  Another important point is not to overdo things on any one day just because you feel so much better as PMR can have a nasty habit of giving payback on the next.   So to sum up, keep up with the daily walking but not too fast or too far at first.  However, leave out the hills for the time being if possible as those leg muscle will be intolerant of that sort of exercise at the moment - in fact, my leg muscles used to rebel it seemed even at the thought of a hill throughout most of my journey with PMR/GCA!

Hi Ann, have had the same problem had PMR for nearly two years now started on 40mg of pred now down to 7/7.5 reducing slowly. Bowens theropy was mentioned by Eileen have just had my 5th session and feel great it has really been good for me the pain in my leg and arm are gone. The Pmr is causing no pain but I had myofascial pain on the left side. I feel really good it's an idea you might consider some people don't get any positive relief from it. To me it's been really beneficial .  Hope you feel well soon regards Tisser

I found that when I was first diagnosed my muscles had atrophied to quite a degree, although the pred worked magic on the shoulder and hip pain. I still have trouble on hills though. My rheumy gave me the impression that I would take the steroids and within days I would be running marathons, total tosh! You still have PMR and all the steroids do is reduce the inflammation, they do not cure the PMR. PMR is life changing and we need to adapt to it's idiosyncracies.

Hi Anne, my journey similar to yours in that I experienced serious pain for nine months before starting prednisolone ( my fault though as I wanted to try everything else first) relief from prednisolone was a god send but I did loose a lot of muscle. Lots of good advice on here already but slow, steady and regular was the key to strengthening my 'bambi legs' ..oh and motivating myself to do it when sometimes ( more often than not!) I'd rather have a snooze💤

I was undiagnosed much longer and had pushed through the pain thinking that it was "just" arthritis.  Therefore I was in pretty good condition and last summer was doing all sorts of activities after the pain vanished with pred - lawn mowing, long walks up and down hills, sanding a bedroom floor.  After a couple of months I learned through this forum that I wasn't cured and I'd better take it easy.  In fact I'm NOT as strong now as I was a year ago   So in a way it's a blessing for you that you're currently limited in what you can do.  You won't be overdoing things like I was, and can gradually build up your stamina (I won't say strength!) in a sensible way.  Things Take Time. 

Hi Ann so sorry you have to suffer that long before you were diagnosed with PMR . I myself is rather new to PMR started in Jan and diagnosed in March. Blood test confirmed it. Yes my legs were heavy and dragging when I walked on my first week with Pred. But it will get better. I can only managed to carry two tins of soup in each hands weeks back and I am better now. I did fair amount of walking everyday about 20-30 mins each time. Two to three times a day if I can. Now I can even get on my body trainer just to burnt 30-40 calories 😜😜 that is all I can do better than nothing. Tapering down from 15mg-12.5mg today, I can feel my leg is getting heavy today (was late with Pred and blood test) I will see how I feel tomorrow. Keep the fingers cross you will feel the changed in three weeks. Take care

HI Ann, I'm 16 months post diagnosis and have had a rollercoaster ride experience with PMR, but the constant for me has been the stiffness in my hips and back. Currently the rest of me is fine, although I'm weaker than I used to be (I'm 52 and was doing triathlons only 2 1/2 years ago!). I'm also fatter than I used to be - quite a bit fatter - and that is making walking harder than it should be as well. Talk about a rock and a hard place.