Diagnosed with polymyalgia rheumatica. Now what?

Polymyalgia rheumatica (PMR) and rheumatoid arthritis (RA) both cause joint pain, but with RA, one's immune cells attack the lining of the joints as well as other parts of the body, such as the eyes

In my last column, I shared that I was experiencing inflammation in my hands, wrists, and shoulders. Impact on the hands has been pronounced and, in fact, worrisome as my hands function as ‘therapeutic aids’ to my ambulation. This turn of events is concerning for a number of reasons. I’m not a young woman, though I do still have luscious locks! It is vital that my hands be fully functional otherwise my independent living could potentially be put at risk. I have been on my own, as a widow, since 2007. I rarely have housework help because, quite frankly, I’m always concerned about things not being put back in their proper place. Sameness is vital to my safety as surfaces are ‘touch spots’ as I move about.

My family doctor was able to secure an expedited appointment with a rheumatologist in Fredericton for which I am grateful. I suspect he’s not assessed a 70 year old patient with both spastic diplegic cerebral palsy and yet to be confirmed arthritic condition. During our meeting, as I sat in a wheelchair that never fit me, he examined me and narrowed the diagnosis, of the opinion that my symptoms were those of polymyalgia rheumatica. Another ‘myalgia’ to add to my collection. 

I’ve lived with fibromyalgia for years. When first diagnosed with ‘fibro’, I did a lot of research to develop a plan of attack that didn’t include a lot of potentially sedating ‘doctor drugs’. As a still uprightly mobile spastic diplegic, I couldn’t afford to have senses dulled as I moved about in my home, whether free walking, or using a walker. I do not currently use my wheelchair in the house; that’s reserved for infrequent city outings.

Polymyalgia rheumatica (PR) and rheumatoid arthritis (RA) both cause joint pain, but in RA, one’s immune cells attack the lining of the joints, as well as other parts of the body, such as the eyes. These characteristics do not apply to PR. Additionally, PR only lasts roughly 1–5 years.

‘Only’ lasts 1-5 years! Ouch! When I stopped and thought about that, I was brought soundly back to reality. Two of my siblings, my eldest sister and youngest brother, lived with rheumatoid arthritis their entire adult lives, both raising families and both impacted with severe disability that significantly compromised their quality of life. They lost so much. Maureen and Michael were blessed with supportive families which means a lot when one is dealing with such a life altering disease as Rheumatoid Arthritis is. Sadly, both succumbed to complications of the RA disease process. May they rest in peace.

Polymyalgia, or polymyalgia rheumatica, is an inflammatory disease of muscle. It’s thought to be an autoummune disease. Though cause is uncertain but it’s thought to be an autoimmune disease where the body’s immune system attacks connective tissue. Primary symptoms are severe stiffness and pain in the muscles of the neck, shoulder and hip areas. Because of the loss of hand function and grip strength, my walking/gait was altered. I was and still am much slower, as I navigate a ‘new normal’. The silver lining is that I’m still on the move and can meet all the demands of independent living … so far!     

Devil’s Claw, which I’ve used for years has been studied for its analgesic and anti-inflammatory properties and has been shown to be effective in rheumatic conditions such as rheumatoid arthritis. That I’ve been protecting myself all along in advance of the diagnosis of a short-lived disease that currently impacts my ambulation and overall daily function is certainly a good thing. As well, I’ve been taking C and D to maintain bone health. Since my early 30s, I’ve been taking supplements to enhance bone and muscle integrity because I knew that aging with cerebral palsy and continuing to be able to walk albeit awkwardly were going to be critical to my mental and emotional health as well as my physical health. It’s important, as best as they are able, for people like me to maintain a level of daily exercise, formal or otherwise. For many, arthritic conditions get in the way and can change the landscape considerably. Key is to develop a plan early on that maintains a certain order of things so that staying in place, living in ones own home can continue for as long as possible. Nursing home life never has to be considered if people commit to doing the work involved in holding on to independence. 

From my very earliest years, my life was a schedule, which has actually ensured that my senior years are diligently managed so that any hiccups along the way are dealt with on the spot.  Knowing I can no longer do something but trying it anyway is not my thing. I have little creatures depending on me, so I can’t fall victim to a case of ‘the stupids’. PMR has me for now, but I will survive. The disease typically involves neck, shoulders, and hips but never the feet; that my hands and arms took the biggest hit has changed how I do almost everything; essentially remapping my brain. 

PMR, considered a rare disorder, is twice as common in females and the incidence increases with advancing age.

If there’s a history of arthritis in your family, advance planning re: nutrition and exercise will help you beat back many of the symptoms. So eat up and go for a walk.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at: Carla MacInnis Rockwell