Cheating Death: Inflammation, Pain & Living With Ankylosing Spondylitis

Written By Alexander Hayes
Screenshot: Harvard Dataverse publication.

Screenshot: Harvard Dataverse publication.

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For as long as I recall I've pushed my body, this biological container that I was born with to its known limits. For the sports enthusiast that might seem like a given yet for me its been the only way I can cope with a chronic and acute hereditary condition which causes extreme athritic pain in my body, constantly.

Experiencing sexual assault as a teenager is the reason why I had early onset arthritis, with a background genetic history of Ankylosing Spondilytis.

Ankylosing spondylitis (AS) is a type of inflammatory arthritis that mainly affects the spine. Symptoms of AS include back pain, stiffness and reduced mobility in the spine. Ankylosing spondylitis commonly affects the sacroiliac joints. These joints connect the base of the spine (sacrum) to your pelvis - Better Health Channel

Since the age of 14 years I’ve been in and out of hospitals not only with spine deterioration but also;

  1. Acute Uveitis (inflamed iris in the eyes - leading or onset to impaired vision & glaucoma - recurrent treatments);

  2. Acute Bursitis (inflamed limbs and joints including the chest - recurrent operations);

  3. Acute Pericarditis (inflammation of the pericardium - water sac and tissue around the heart - recurrent hospitalisations);

  4. Pulmonary Fibrosis - Trouble breathing as the upper body curves forward and the chest wall stiffens with susceptibility to lung infections and pneumonic impairment (recurrent chronic condition) - Stanford Health

It seems I have been blessed with experiencing all of these and the myriad of associated stressors that the medications assigned have on the organs within our bodies.

I am writing the following in the hope that this will perhaps help anyone else reading this with their own lives in their own way. If I come across people who want to know more about what ‘cheating death’ means in the context of my life I now have somewhere to direct them to better understand where I am coming from.

Some people will accuse me of fishing for sympathy but as I've discovered that sharing of this type of information empathetically in some cases will save a life or at best help others who are in similar situations fighting in life rather than living a life worth living.

BACKGROUND

At age 14 I attended a consultation with a rheumatologist in Rockdale, Sydney after presenting with sacroiliac pain having presented to general practitioner doctor repeatedly months before. I was informed after a battery of blood tests that it was confirmed I was Human Leukocyte Antigen (HLA) B27 positive.

STATISTICS

The baseline statistics for prevalence are expressed as follows:

"...The prevalence of HLA-B27 varies markedly in the general population. For example, about 8% of Caucasians, 4% of North Africans, 2-9% of Chinese, and 0.1-0.5% of persons of Japanese descent possess the gene that codes for this antigen.[1] In northern Scandinavia (Lapland), 24% of people are HLA-B27 positive, while 1.8% have associated ankylosing spondylitis."

So you can see by those statistics that the condition that is genetically transmitted and transmuted, is also much higher per population average for Caucasians (and that is me of course). Another interesting factor that speaks to the rarity or likelihood of ever exhibiting traits of Ankylosing Spondilytis is as follows:

"... For example, while 90% of people with Ankylosing Spondylitis (AS) are HLA-B27 positive, only a small fraction of people with HLA-B27 ever develop AS. People who are HLA-B27 positive are more likely to experience early onset AS than HLA-B27 negative individuals."

ATTRIBUTIONS

Well as fate would have it I am one of the few people who exhibits and endures the painful effects of many aspects of this degenerative condition. I am also one of the few people who also exhibit other associated pathological conditions as a result of being HLA-B27 positive.

"... In addition to its association with Ankylosing Spondylitis, HLA-B27 is implicated in other types of Seronegative Spondyloarthropathy[7] as well, such as Reactive Arthritis (formerly known as Reiter's Syndrome), certain eye disorders such as acute anterior Uveitis and iritis, psoriatic arthritis and ulcerative colitis associated spondyloarthritis. The shared association with HLA-B27 leads to increased clustering of these diseases."

So, in summary my Ankylosing Spondylitis (AS) condition has manifested itself in me over the years progressing from teenager (2), through my twenties (4) to early forties (6) and now (8) using a Wong-Baker Faces Pain Rating Scale. I have lost count of how many times I've presented at hospitals for assessment, pain relief or admission for treatment that is pain specific or as they might claim, psycho-social inherent.

Wong–Baker Faces Pain Rating Scale - Available at https://en.wikipedia.org/wiki/Wong%E2%80%93Baker_Faces_Pain_Rating_Scale

Wong–Baker Faces Pain Rating Scale - Available at https://en.wikipedia.org/wiki/Wong%E2%80%93Baker_Faces_Pain_Rating_Scale

As a result I am now waiting here in the Fiona Stanley Hospital in Perth having been flown down last week by the Royal Flying Doctors service of Australia. So far they have ruled out a heart attack yet have run countless ECG's and cardiovascular tests including an angiogram and talk of installing an Implantable Loop Recorder (ILR) or cardiac monitor which is inserted in the chest cavity under the skin.

There maybe some correlation also with some Vagal Syncopy of which I've fainted a few times as a teenager and that of my hypertension and arrhythmia, low BPMs and all the other manifestations which are putting everyone's career spikes on alert.

Discussions are underway about the possibility that there maybe some correlation between my early days of treatments using high doses of prednisone which is a corticosteroid, the drug Sulfasalazine, the anti-inflammatory Meloxicam (Mobic), copius quantities of Oxycodones (Endone) and Morphine, non-steroidal anti-inflammatory drug (NSAIDs) Ibuforen, acetaminophen or APAPs (Panadol), opioids like Tramadol and probably another ten which I cant think of at this very minute, with that of my present condition. Oh, thats right, add every known inhalation medication such as Intal ( Cromolyn sodium), countless Ventolin puffers Salbutamol, also known as albuterol and marketed as Ventolin) and preventers like Fluticasone propionate (Flixotide or Becotide)  which are hormones that predominantly affect the metabolism of carbohydrates all which did havoc to my teeth and my lungs.

WESTERN MEDICINES

It's obvious to anyone that western medicines have failed me over and over and none more so that now although I must admit the hypertension medication Valsartan which is an angiotensin II receptor antagonist (commonly called an ARB, or angiotensin receptor blocker) that I am on now has probably saved my life on more than one occasion.

Of most likely correlation though between all this drug overdose above and my current (pending) prognosis is the tie between those steroidal and opioid drugs which have lowered and most likely damaged my adrenal functioning to produce the natural corticosteroid known as cortisol.

According to Wikipedia the meaning of Cortisol can be described as:

"...Cortisol is a steroid hormone, in the glucocorticoid class of hormones. When used as a medication, it is known as hydrocortisone. It is produced in humans by the zona fasciculata of the adrenal cortex within the adrenal gland.[1] It is released in response to stress and low blood-glucose concentration. It functions to increase blood sugar through gluconeogenesis, to suppress the immune system, and to aid in the metabolism of fat, protein, and carbohydrates.[2] It also decreases bone formation.”

It makes logical sense that if you slam your body with drugs that replace the natural functionings of the human body with those of the pharmaceuticals duopoly then the fallout is going to happen through the very functions and organs such as the eyes, heart and liver as a result.

I'm also reflecting on how many times I've been hospitalised with things like deep vein thrombosis (DVT) and then been pumped full of Heparin or Warfarin with are anticoagulants to treat and prevent deep vein thrombosis, pulmonary embolism, and arterial thromboembolism of which in my case I'd had a clot prevented from reaching the brain via my jugular vein.

DIET, EXERCISE & MEDICAL FUNCTIONING

Anyone who has an interest in Ankylosing Spondylitis is likely to come up against those who believe there is a direct correlation between diet, exercise and medical functioning. In some ways through the years I've known all of this through various and many hospitalisations

More specifically some advice I’ve been given over the years includes;

  • Low glycemic index diet - low sugar or no sugar forever;

  • Yoga - high level (Asana) low impact flexor;

  • Zero alcohol - ever, never, ever.

  • Zero tobacco - ever, never, ever.

  • Fatty foods - limited, salt free

  • NSAIDS for pain - Diclofenac (Voltaren) or Ibuforen at most

In essence it would appear that I've used up the 6th life of the nine I've been assigned in a lifetime. I've been told I've narrowly avoided having a stroke.... 

It seems obvious that the link between hypertension and anger results in the body shutting down as an immune response. The same could be said of that with the emotion of anger and the numerous ways it associates our emotional selves to reach out for poisons to mask that anger-slash-fear association.

I've written much about the love-trust relationship with the world and its my greatest challenge yet having largely been subjected to the worst of the worst from those who had been charged with being the best of the best.

IDIOPATHIC PULMONARY FIBROSIS

None of this did any good in treating what I’ve since learned and that being that I’m likely to have been suffering from the very first pathologies of Idiopathic Pulmonary Fibrosis.

“… Idiopathic Pulmonary Fibrosis (IPF) is a type of rare lung disease in which the tissue around the air sacs (alveoli) within the lungs become thickened and scarred – this is called fibrosis. This scarring makes the lungs stiff which makes it increasingly difficult to breathe. This slows the efficient delivery of oxygen into the bloodstream where it is needed to be transported to the rest of the body.”

I’m certain I’m suffering from this condition in conjunction with Ankylosing Spondylitis as my symptoms are a shortness of breath, especially when walking up hills or climbing stairs, at times a persistent cough that doesn’t get better for a long time, my obvious reduced exercise capacity and chronic points of feeling tired, muscle wastage and weight loss.

Here is a paper on the topic of how Idiopathic Pulmonary Fibrosis occurs as a comorbidity with Ankylosing Spondilytis - Cardiopulmonary Manifestations of Ankylosing Spondylitis

Scheurmann’s Disease

Another pronounced, visible and debilitating condition I suffer from at times is Scheuermann's disease, also comorbidity with Ankylosing Spondilytis - Juvenile Kyphosis

“… Scheuermann's disease, also known as Scheuermann's kyphosis, is a condition that results in an increased rounding posture of the spine. Kyphosis refers to a curving of the spine that leads to a 'hunchback' or slouching posture.

Although the cause of Scheuermann's disease is unclear, it is likely to be hereditary and in my case it is directly correlated with the main Ankylosing condition. here are some resources on that condition;


Alexander Hayes

https://www.oethica.org
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