Saturday, June 29, 2024

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

                                                                          







                      



Saturday, June 1, 2024

Thank goodness I'm a lightweight

 

Photo: PEXELS

Cerebral palsy often causes or contributes to secondary conditions and those living with cerebral palsy, such as I am are at risk for arthritis, the pain and stiffness in joints resulting from wear and tear on the cartilage over time. To ensure compliance, explaining to children the daily life protocols to cope must be delivered in easy to understand language. Children with cerebral palsy benefit from preventative strategies, pain management, surgery, and other treatments for arthritis, given there are more than 100 types and it’s important to follow progression at the point of diagnosis. It can be like a runaway train.  Ask me! I know!

Currently, I’m doing battle with inflammation of both hands; shoulders, elbows and wrists are involved as well. Inflammation in the joints, which causes swelling, pain, stiffness, redness, and difficulty moving the joint can take a shot at any part of the body, including the knuckles, elbows, shoulders, hips, and knees. Cartilage degradation is a key player in the destruction, so adopting the ‘we are what we eat’ philosophy contributes to improving outcomes in the long term.

Risk factors for the development of arthritis include a family history of arthritis; another risk factor is having a condition that causes unusual or excessive wear on joints, like cerebral palsy. I’m two for two!

Living with cerebral palsy is a risk factor for osteoarthritis, but the degree of risk, which joints are affected, and age of onset varies by individual.  The joint or joints affected depend on the type of disability that a person with cerebral palsy has. For instance, for a child who struggles to walk, having a gait that makes the hips or knees move abnormally can lead to arthritis in those joints. As children with CP age and enter adulthood, the risk of developing arthritis increases. When a child has pains beyond ‘growth spurt’ markers, seek consult with rheumatologist.

Persons with cerebral palsy have different degrees of abnormalities in the neuromuscular system which may cause unusual movements in the joints, overuse of joints, excessive wear on joint cartilage, and compression of the joints that ultimately lead to osteoarthritis. My upper body, my arms, are assistive devices for walking and they’ve been compromised which concurrently impacts my safety.

Hip arthritis is relatively common for this reason in people with cerebral palsy. Even joints not involved in walking can be affected. Muscle imbalance across a joint is common in cerebral palsy. This can cause unusual shoulder or elbow joint movements, leading to premature cartilage wear. 

While many people with cerebral palsy will not experience arthritis until they become adults, it is possible to develop it as children. Parents should be aware of the signs of arthritis because earlier intervention will produce better outcomes. The symptoms of osteoarthritis in any joint include: pain that occurs during or after movement in the joint; stiffness in the joint, often after sleeping or a long period of little movement; tenderness when the joint is touched; inability to move or flex the joint through a full range; a feeling of grating inside a joint when moving.


Treatment plans are individualized and monitored. The least invasive types of treatment don’t treat inflammation but help with pain and mobility. These include painkillers, such as over-the-counter acetaminophen, or nonsteroidal anti-inflammatory drugs, such as ibuprofen.

Treatment can also include physical therapy and gentle exercises that help to strengthen specific muscles and make moving a joint easier and less painful. When arthritis becomes more severe or debilitating, and these non-invasive treatments provide little relief, more invasive strategies can be used, such as surgery.

It is sometimes possible for a problem causing the abnormal movements or overuse of the joint to be improved with surgery. This is highly variable by the individual. For advanced cases of arthritis in a joint, replacing the entire joint with an artificial one may relieve pain and restore mobility. Hip replacement surgery is a relatively safe way to treat adults with cerebral palsy who suffer from severe osteoarthritis in the hip joint.

Many living cerebral palsy will develop some form of arthritis and prevention may ultimately not be possible. There are ways to prevent it and minimize damage and symptoms. Knowledge is power. 

However, the critical step is diagnosing and beginning treatment for cerebral palsy early in childhood. The more comprehensive and consistent treatment a child gets, the better the chances of reducing joint damage over time. The first 13 years of my life I was exercised 4 times per day. That early and critical daily therapy to ‘grow into CP’ contributed to me being able to still walk at 70! 

Early and ongoing treatment that can help children and adults with cerebral palsy move in healthier ways will minimize the development of arthritis. This may mean surgery to correct bone or joint deformities, physical therapy and exercise to develop muscle strength and balance around joints, and mobility aids.

Lifestyle habits can also minimize and prevent arthritis. Maintaining a healthy weight, for instance, can take the pressure off the joints. Occupational therapy is also helpful in promoting the performance of daily tasks in a manner best for the joints.

Arthritis is a painful condition that most people don’t expect to experience until they are elderly. Unfortunately for people with cerebral palsy, the deterioration of joints that causes osteoarthritis begins early in life and is more significant than for other people.

With good overall treatment, watching for early signs of arthritis, and treating pain and other symptoms, a young person with arthritis can continue to enjoy life with improved mobility and minimal pain.


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