Damage Done

“It can be difficult to know whether you have chronic inflammation in your body … It depends on where and how chronic inflammation manifests itself. And it’s not the same in every person.”¹

I’ve dealt with health issues from roughly my 20’s through mid 40’s where I desperately sought answers for not feeling well. A second opinion 5 years ago opened doors that eventually (forever and a day) led to a diagnosis of spondyloarthritis. A question asked during my consultation visit was, “When did you first notice symptoms?” As I sat face to face with my new rheumatologist, I quickly blurted out when I first acknowledged the pain had become unbearable rather than when the pain and fatigue first began. Inflammation is sneaky and can go undetected for decades, rearing its ugly head at the most inopportune time. Shouldn’t we be protecting our health and wellness long before it spirals downward? And avoiding the end-game of having to manage symptoms of chronic illness?

I remember hidden inflammation from a young age

After much contemplation and inner monologue, it became abundantly clear to me that symptoms didn't begin 5 years ago, that I suffered from hidden inflammation from a young age. It wreaked havoc, this cloaked malady, and took over my life. A despondent mess, I dove into my own world of misery. I began to sleep to avoid feeling awful and my anxiety rocketed to unimaginable heights, forever changing my trajectory in life. I went from a jovial, flourishing, youthful lass to a struggling, dispirited adolescent grappling with declining infirmity and poor health, not knowing how to help myself.

As a child, I never felt well. There was an unrelenting storm in me that had me feeling unnerved and disquieted, causing me to be anxious and irritable. This foreboding never wavered and became chronic. I was unable to put my finger on why I felt poorly and was led to believe this inner restlessness was normal. I accepted it as if it were “just life”. Now I question the way my health and wellness was approached, of how ignoring me not quite feeling so well, suffering chronic nervousness and melancholy, should be so easily pushed under the rug without further investigation.

Stomach problems, headaches, and unexplained symptoms

The first sign was the terrible stomach problem when I was 4-5 years old. The dreadfully sharp pains in my lower stomach befell me at least 3 times a week. Hunched over, arms wrapped across my abdomen, tears coursing down my face, I begged for the pain to end. An hour or two later the pain relented, though I was exhausted beyond belief. These episodes defined me; I became eternally regarded as the “difficult child.” I was terrified of leaving the comfort of home because I never knew when I’d have another attack. I suffered for years enduring and learning to control the episodes on my own – it was utter torment. Although I continue to this day to have irritable bowel syndrome (IBS), I have a physician who has my back; my gastroenterologist aids me in reducing gut irritation and has hindered the insistent pain.

In my early teens, headaches and jaw pain began. The merciless pain afflicting me was truly cruel and debilitating. Eating became a chore. My concentration and demeanor suffered. frequently I would have sharp twinges in my inner ears. As I slept, my jaw would clamp down and grind, at times all night long. It seems that with stress I developed TMD/TMJ – temporomandibular joint disease. My joints began to break down, eventually becoming bone on bone. This jawbone dysfunction was causing crippling headaches and terrible facial discomfort. It was expressed adamantly that I should learn to “relax”.

A struggling immune system

I also contended with allergies, sinus infections, and asthma throughout my teens. Most daily activities were affected, as well throughout the night. Fragmented sleep and allergies fed the instability of my mental state. Allergies culminated in hives, chronic sinus infections, and lengthy colds and bronchitis. I battled episodes of activity-induced asthma, routinely stopping me in my tracks, where I was continually reaching for a hit off an inhaler. Only just recently I received a diagnosis of mast cell activation syndrome (MCAS) from an immuno-allergist. It is a “disorder where components of the bloodstream, namely mast cells, secrete various substances which can be involved in an allergic reaction or inflammatory reactions…"² My many triggers of inflammation consisted of foods, dust, animals, exercise, temperature changes, smells/aromas, plants, flowers, and trees, to name a few – which exacerbate headaches, that warp into vertigo and imbalance, then twist into migraines.

My immune system was struggling for years to maintain a healthy course. In my 30’s and 40’s the disease of spondyloarthritis (inflammatory arthritis) reared its ugly face, declaring full control of my body. I am quite sure this latent inflammation is the root cause. Before really thinking about the question, “When did you first notice symptoms?” I honestly believed I had a healthy childhood. I remember softball, long car rides, family gatherings, state parks, and movie nights. I pushed my body to its limits for my career. But, the more I recalled how I really felt when young, I saw the signs of low-level inflammation sitting undetected, quietly ravaging my body until the point where it was unable to manage it. I am now coping with the repercussions of chronic inflammatory disease, and struggle to manage the damage that was done the best I can.

My axial spondyloarthritis could have been managed sooner had someone listened

Being honest about my health, I was much younger when the fatigue, pain, and irritability began. But, as mild as these symptoms were, the warnings were easily disregarded or explained away. Due to my spry age, appearing well, and seemingly quite capable of caring for myself growing up, I couldn’t possibly be sick. Little did I know these were indications of a much bigger problem that could have been managed far sooner than later. In my case, the damage was already done.

When did you first notice symptoms? Are you sure it wasn’t earlier?