I am diagnosed with atypical PMR and have severe pain in my buttocks and thighs, but only a little shoulder pain. I also have disc degeneration in my lumbar spine, and have had two successful hip replacements.
If I reduce my steroids below 15mg the pain worsens. It is bilateral and is unlike the pain I had from hip arthritis or sciatica. I do feel as if my hamstrings are tight.
Do other people experience pain in this area?
Ann
Hi Ann.... my PMR came on suddenly started with shoulder pain and limited movement and within a couple of days I was like concrete woman barely able to move...I was hunched and stiff, couldn't move my arms and couldn't move my hands more than a few inches in any direction. It was awful...but the thing that sent me totally over the edge was the excruciating burning pain in my buttocks and thighs...it radiated from my buttocks to the backs of my knees and felt like someone had set fire to the tendons and pulled them up short. To sit or to get up was so painful that even with the max dose of painkillers it made me cry and staying on one position was agony too.
I have had psoriatic arthritis for many years and have had tendon problems associated with the PsA...but the onset of PMR was unlike anything I had ever experienced.
I am dropping pred very slowly indeed in 0.5 increments and at every drop I get a few days where the pain and stiffness return....not at the same level, but I am acutely aware of it, particularly the burning hamstring type pain. Thankfully so far this has settled again after a week or so and after talking with my docs I agreed that I would give it at least two weeks to settle again after a drop before making any dose adjustment decisions
I need to get the pred down (ideally gone) because my DEXA scan was not good and the general pred effects are horrible...
Not sure if any of that is helpful?
Hello Ann
Yes those areas of pain will resonate with most of us I'm sure. iforget has given a perfect description in "concrete woman" - on the worst days it is just like wearing a concrete overcoat and walking through treacle.
Many of us suffer some steroid withdrawal pain in the first days following a reduction and if you are finding reducing by 1mg and going straight to the new dose too much of a problem, then perhaps you could try reducing on just two days of the week with the old dose in between. Failing that, then you might find it easier to just try a 0.5mg reduction.
Thank you for this. It is helpful to know that others deel this pain, although I sympathise with you all'
Ann
Hello Ann,
When I first came down with PMR, I had horrible pain in what I call the "T" zone: from the base of my skull half way down the spine, and right across both shoulders with pain underneath the shoulder blades. That was the top half. On the bottom it was hip area, but the worst was the tail bone...ached all the time.
In flare-ups I have had the classic muscle aches in upper arms and thighs.
Key to survival is to Keep Moving. No matter how bad the day you are having, do your exercises as best you can on that day. Can be tough, but alternative is worse.
Dorothy
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