Getting Out of Bed with Spondyloarthritis, Part I
For years, my "good morning" attitude has been squashed by chronic illness. Enduring a restless night of pain associated with spondyloarthritis (SpA) makes it much more difficult for me to rise and shine with pleasantries most desirable of a delightful person. The stiffness, when first waking up, really deters me from even wanting to peel myself from bed. It leaves a never-ending scowl on my face and puts a damper on the rest of the day. This is the SpA struggle for me. My motto - RAWR! (The lion has awakened.)
In my youth, I was dancing at least 6 hours a day and performing on stage on a regular basis, teaching toddlers to tap their feet, tumble, and pirouette. Developing routines, creating costumes, scheduling rehearsals, attending recitals - all represented the whirlwind of my fabulous life. I was in tip-top shape. My goals and inspirations kept me motivated and moving.
Unfortunately, this lifestyle ended much sooner than I intended. An exhaustive performance my senior year ended with a severely twisted left ankle with damaged ligaments. A few years later, birthing my daughter, a disc in my neck burst. I knew it the moment I did it, but for years I was told by several physicians nothing was wrong. A few years after this, I ended up crumpled on the floor after my legs collapsed while lifting wrong. The spasms were incapacitating. I tried to continue on at this racing pace, but it all became too much.
I was thrust on a 30-plus-year journey into unrelenting and inexplicable full-body pain and disability. Discs in my spine disintegrated, ligaments and tendons inflamed to unimaginable levels, and joints gave out much quicker than most do. I now find it difficult to do any real exercise plan, let alone move across a dance floor. In fact, at my husband's employee holiday party the year before last, I ended up on the floor. My hip gave out prompting hip replacement. I am going on a 5th (or is it my 6th?) surgery for my ankle in 2 weeks, and have had several surgeries on my neck and spine to stabilize it. The pain is excruciating at times.
Pain associated with SpA, systemic inflammatory arthritis, has a wide range of intensity, from very slight to extremely debilitating. I am acutely aware of how inactive I have become, and of the damage that uncontrolled inflammation has truly done. For years I struggled to get a diagnosis, seeing many different physicians, being told it was all in my head, undergoing several ineffective treatments. The worst explanation I received was when I was told it was the depression causing my pain. RAWR!
A 2015 study observing early versus delay in diagnosis of spondyloarthritis elucidates the ramifications of uncontrolled inflammation in the body. “A definite diagnosis of SpA led to proper management and clinical improvements. The patients with delayed diagnosis showed worse outcomes in disease activity, function, spinal mobility, and/or radiographic damage. These patients also demonstrated a less favorable treatment response according to the Bath Ankylosing Spondylitis Disease Activity Index and the rate of radiographic progression."1 I often ask myself, if I received a diagnosis and better treatment a decade earlier, would I be in the shape I am in today? Would the pain and inflammation be less? I know I shouldn’t focus on the "What if's" and "Would've, could've, should've" - but I can’t help but think I could be better off physically. I long for my career and what I should be doing if I were healthier.
Importance of just moving
Some who suffer from axial and/or peripheral spondyloarthritis (AxSpA/pSpA) may have pain well controlled by treatment and are able to jump out of bed and be fruitful, go about the day with some sense of direction and purpose, but I am not one of those people. My creaky joints hurt immensely. They do not want to move at all, especially in the morning. And, it’s not just one joint, it is a full-body pain that has me chained to the mattress, wincing as spasms grip as I rotate my neck or enduring endless twinges while bending my elbow or knee. It's a full-out struggle between me and the world, and I only just opened my eyes.
Remaining mobile is important for many health reasons, especially as you age. Cartilage thins. Muscle fibers decrease. Tissue changes stress the joints. Loss of body strength ensues. Activity and exercise advantages include better health overall - cardiovascular, mental clarity, emotional stability, musculoskeletal flexibility. "In addition to the general benefits of exercise noted [above], individuals with spondyloarthritis can benefit from exercise in other ways. Regular exercise can help improve posture, stiffness, pain, fatigue, breathing capacity, and therefore overall function. Through these physical effects, people with spondyloarthritis also report that exercise increases their quality of life and decreases the burden they associate with their disease."2
Movement is crucial - as if a lifeline – for those with inflammatory arthritis. Mobility, flexibility, strength, and balance are essential when dealing with chronic illness. It can ease the joint-aching, spine-throbbing, pelvis-stabbing, hip-cramping, synovio-entheseal burning that seems to have permanently settled into my weakened body. "Regular physical activity is a critical part of managing AxSpA. It helps prevent stiffness and preserves range of motion in the neck and back. Walking, swimming, yoga, and tai chi can help with flexibility and posture. It’s also important to strengthen your core and legs. Talk to a physical therapist to put together a total exercise plan."3
What activity do you lean toward to manage your SpA symptoms?
Does reading AxSpA patient stories help you in your journey?