Polymyalgia Rheumatica: a patient’s perspective

I recently approached one of my longstanding patients for her perspective on Polymyalgia Rheumatica (PMR). This blog, as with all of our firsthand accounts, is designed to be informative and insightful. Please seek medical support if you think you may also be suffering from PMR.

What are/were your PMR symptoms?

The original symptoms began 12 months ago and were centred around a rather sudden onset of hip and gluteal muscle soreness. I was experiencing enough discomfort to seek Physio advice. A short time later, I was a participant in the GLAD program. My regime was modified to accommodate this persistent soreness.

Image credit: https://arthritistreatmentctr.com/polymyalgia-rheumatica/

A regular physiotherapy client for long term treatment neck and shoulder muscle stiffness, an additional concern arose when the usual treatments did not work. Increasingly, raising my hands over my head was painful and any exertion caused pain and discomfort for days afterwards.  

Over the next few months, the level of muscle soreness/pain became more general – getting in and out of bed, a chair, car etc., fatigue set in. The pain was worse at night and in the mornings. At its most impacting I found it hard to squeeze the petrol nozzle to fill the car.

What was your journey to a PMR diagnosis?

Three months later after exhausting all the usual interventions for muscle soreness,  I was referred to a Sports Physician for assessment of the hip pain as this was thought to be due to arthritic changes/age related deterioration. However, I did not pursue this referral and eventually was seen by my GP in June who quickly ordered blood tests and having those results, which showed elevated levels for inflammation, referred me on to a Rheumatologist where the the diagnosis of PMR was confirmed.

What are your main issues/concerns with PMR?

The main issue and the one that consumes my day, is management of the pain, fatigue and coming to terms with the limitations of exercise and daily activity. Anything dropped on the floor may stay there – until such time that I am able to bend over and pick it up!  

My challenge has been to come to terms with this condition, both mentally and physically, and to accept the fact that each day is going to have some form of difficulty imposed on me and to look at how to work around them.

What advice do you have for someone newly diagnosed with PMR?

Firstly, not all PMR patients experience the same severity of symptoms for the same length of time. Having a diagnosis is at first affirming, especially if you have previously been fit and well. But it also means you are going to need medication and ongoing specialist care.  

I had underestimated the extent to how much and for how long, PMR would affect my day-to-day living.  Chronic pain and fatigue are (understandably) depressing and interventions to manage those two factors are necessary. Mobility supports, like the extended ‘claw’ for picking up things, are worth looking into to. I have kept up regular visits to Exercise Physiology although my routine has been dramatically downgraded, however, it serves as a marker. And commenced hydrotherapy.

Some weeks are good, others not so. Walking is always a good thing to do, but for shorter distances, with the mandatory coffee at the end.  My EP also drew up ‘Five minutes Exercise program’ to do at home, which is an achievable task when I am experiencing elevated muscle soreness and pain. Gentle massaging on sore muscles is momentarily easing and supports the feeling of well-being.  I have re-engaged with my physiotherapist for other treatment options.

Twelve months on from first onset and 6 months from my first consultation with the Rheumatologist, I am far from feeling  ‘comfortable’, but I am fortunate to have access to specialist care and allied health supports.

I think my advice is to be kind to yourself, be honest about your expectations of what you can/can’t do (today is NOT the day for vacuuming!). REST. Keep up your usual social activities/other fun distractions and take all the sympathy and any practical assistance offered by family and friends!

~ Anonymous

Arthritis Australia: https://arthritisaustralia.com.au

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