How I overcame ankylosing spondylitis

Reader Stacey asked for an update on my AS and how I’m now faring, so I thought it would be a good idea to do a blog post on my current status and how I got to where I am now.

The disease

It started back in late 2010/early 2011. I’d gotten married and we’d bought a unit, so it was a time of intense and significant changes.

I was working on the unit – cleaning and painting and fixing things – and feeling pretty terrible about it. I’d never thought much about owning property, and with the housing market so difficult to get into, it was a big reality-check to realise we could only afford a one-bedroom unit on a busy road.

The unit was not in good condition, and I was not happy or enthused about moving in. Yet I felt I just had to get it done, put my feelings aside, and just keep going until it was ready.

That was when I had my first bout of iritis/uveitis. I thought it might have been caused by the anti-mould additive I had mixed into the bathroom ceiling paint.

But I tested positive to HLA-B27, an antigen associated with ankylosing spondylitis and other auto-immune conditions. As wikipedia states: “while 90% of people with ankylosing spondylitis (AS) are HLA-B27 positive, only a small fraction of people with HLA-B27 ever develop AS.”

I had recurrent episodes of iritis, and each time was asked if I had back or neck or other joint pain, with the implication that I could expect to develop these symptoms at a later point. Eventually the ophthalmologist referred me to a rheumatologist “just in case”.

I well remember the first time I felt the stiffness and pain in my sacro-iliac joint.

I was sitting in an armchair in our unit, reading some fantasy book on my kindle, and I remember thinking “is this all there is?” Is that what life is all about? We work to earn money, and when we’re not working we distract ourselves with entertainment. That was never the kind of life I wanted to lead, and yet that’s where I’d ended up.

When I got up from the chair, I noticed a dull ache near my hip.

I thought the ache was from sitting in the chair for too long.

By morning it had gotten worse. I don’t remember the exact timeline, but it got to a point where the pain was so severe I could barely walk. I rang the rheumatology clinic and had them move my appointment forward.

I clearly remember taking tiny steps towards the front door of the hospital. It was one of the most intense pains I’ve ever experienced.

The rheumatology registrar cheerfully agreed that I’d developed to the next stage of AS. He put me on celebrex (an NSAID), ordered x-rays, and explained to me the great new drugs available that would suppress my immune system and slow the progression of the disease – a progression that would see my joints slowly calcify.

The celebrex worked well, but the doctor was keen for me to get everything lined up for subsidised disease-modifying antirheumatic drugs.

Being in the public system, I ended up seeing a new doctor each time I went in – every six months. They all had a similar perspective, though some were more diligent and “by the book” and would order blood tests and x-rays, while others would just tell me to come back if anything changed.

Some were keen to get me on the more powerful drugs, while others seemed content to let me just use celebrex as required. I asked more and more questions as time went on, but received slightly different answers from different doctors.

For example, some spoke confidently about what I would expect to see as the disease progressed, while others were more tentative about the actual diagnosis.

Eventually I pressed the issue, and one of the registrars explained that…well given the history – the iritis/uveitis, the HLA-B27, the inflammation in the SI joints, past history of joint pain (my left ankle would get inexplicably inflamed at times), my positive response to the NSAIDS, and the fact that the pain was worst in the mornings and after sitting, all suggested that it was likely to be AS.

Looking for a change

The pain was at its worst in the mornings, and would hurt like hell when I tried to roll over in bed or get up out of bed.

It also interfered with my martial arts practice – most gross movements were fine, but there were occasional moves that would put pressure on my SI joint and remind me that I was still in the middle of a flare-up.

In a weird way, I wasn’t that upset about the disease. Occasionally I thought about the progression, and that really terrified me. I didn’t like taking the NSAIDs because I knew the relief they brought was only temporary – they wouldn’t halt the disease progression.

But still, it was possible for me to ignore the disease in most of my waking life.

I think that’s what got to me in the end. The fact that I wasn’t upset about having this illness when really it made no sense to me. If I started thinking about it, I felt angry and annoyed that my stupid immune system was inflicting this damage on my own body.

I used to believe that this kind of thing had meaning. I used to believe there was a purpose and a direction to life, and having an auto-immune disease was not some kind of random, meaningless affliction.

Besides, other things in life were going quite well. I was reasonably happy, and involved in a lot of activities. Why not take another look at this disease, dig a little deeper, and try to work out what was causing it?

I spent some time looking into the role that stress plays in diseases like AS. The evidence was suggestive, but incomplete. So when I asked one of my doctors if she thought stress could play a role in the disease, she quite truthfully replied that there is no evidence for it.

But as far as I could tell, there was no evidence against it either.

There was evidence showing that people with traumatic childhood experiences are more likely to experience chronic diseases later in life. There was evidence around the relationship between inflammation and anxiety and depression. There was evidence around the relationship between emotional states and inflammatory markers in the body.

But no, there was not yet evidence that stress or psychological factors of some sort might trigger the flare-up of an autoimmune disease like AS.

Absence of evidence is not evidence of absence.

So I decided to revert to a principle I used to believe before I lost my ideals. The principal was that suppressed, unaddressed negative emotions will eventually overflow into some kind of physical manifestation.

Dr John Sarno – requiescat in pace –

I just googled Sarno only to find out that he passed away at the age of 93 on 22nd June this year.

Sarno’s basic premise was that various chronic ailments – starting with back pain – were psychological in origin. Not that the pain wasn’t real, but that the body created real pain to serve a psychological purpose.

With a Freudian perspective, Sarno taught his patients that the pain was created to suppress ‘unacceptable’ emotions. Sarno found that many of his patients were cured simply by learning (and accepting) that this was the real mechanism underlying their pain, while others required in-depth psychotherapy to further elucidate the emotional cause.

I read Sarno’s books, and found them inspiring. Yet I wasn’t one of those who recovered simply by learning about the psychological cause.

I recommend Sarno to anyone with chronic ailments, but with the caveat that my own solution proved to be a little different, or perhaps more nuanced than the books I read would suggest.

I also discovered it was possible to let the search for a cure become a cause of stress in itself.

Perfectionism and emotional themes

Sarno and his supporters identified a set of driven, perfectionist personality traits that seemed to correspond to these psychogenic pains.

The problem is that it’s easy for a driven, perfectionist type of person to become driven and perfectionist about overcoming their illness.

This is made all the worse by the knowledge that some people are cured just by learning Sarno’s theory and accepting it.

Why wasn’t I cured that way? Maybe I wasn’t trying hard enough? Maybe I wasn’t being diligent enough in analysing the emotions behind the symptoms?

I kept looking for more information that developed on Sarno’s work.

Eventually I came across a set of youtube videos by a guy named Richard, who had overcome back pain symptoms very similar to my own (but with a different diagnosis), using Sarno’s theory.

Hearing other people’s accounts of overcoming their pain is always encouraging, but Richard included a timeline of his recovery that showed it hadn’t been instantaneous.

It helped a great deal to know that an instant and complete recovery was not the “correct” result, and that I wasn’t necessarily doing something wrong if I didn’t recover immediately.

I emailed Richard in late 2013 asking for more information and he gave the following reply:

can you trace the pain back to a very first time you experienced it?  the place/circumstances of the first occurrence might give you clues about what the mental issue is.

i do believe it takes some discipline after first hearing about this idea / reading his book to really effect a full recovery, in terms of eg tracking and experimenting with different themes.  in the end i had a collection of several emotional themes, including time deadlines, accomplishment goals, and also mental conditioning issues (eg i got used to feeling pain in the mornings), which could all be independent of each other.

try keeping a journal or notebook to keep track of which themes you get results with, at which times.  you can even write down the themes that don’t really work for you, just to make it even more systematic.  i wouldn’t be surprised if it takes a few weeks just to work out all the issues to see lasting improvement.  it really is like learning a new skill, and just as rewarding.

try not to get discouraged if you don’t effect a full recovery right away, and keep at it.

In the end it actually took me another whole year to work out the specific cause.

Richard was right about the themes. My old notes contain lists of all the sources of pressure or stress in my life, and there was a lot going on at that time.

But there was something specific and nuanced about the flare-ups of AS, and I think that’s why it took me so long to overcome them.

Shifting gears

Following Richard’s advice I had developed a much clearer impression of what a perfectionistic, driven, stressful and intense person I was.

I had also come to realise that I was suppressing the emotional symptoms of this stress and intensity.

There’s a section in my old notes where I rated my pain from AS as 7 out of 10. I then rated my subjective emotional stress as 4 out of 10. But then I considered my objective behaviour – how driven I was and how many things I was trying to achieve, and how often I was thinking about them, and awarded myself 8 out of 10 for this self-imposed pressure.

So, I was under immense pressure, but I felt fine! Great! I just had these bouts of severe pain in my SI joints, and the prospect of a slowly crippling disease ahead of me…

Finally, in the midst of self-scrutiny and observation, I had another flare-up and was self-aware enough to ask what had preceded this specific flare-up.

I had noticed a change in my state of mind, like I had shifted gears mentally. I tried to work out what had caused this shift in gears but couldn’t locate it.

Time went on, and finally another flare-up occurred. This time I knew exactly what had prompted the change in my mind, the shift in gears.

It was prompted by a decision to try freelance writing professionally. I’d written for a few years as a side-interest, but had lost my main job and decided I would give writing a real try.

At that point I made some kind of deeper commitment or decision. I felt like a deeper part of me was assenting to this idea that “from now on, I just have to write. Do nothing but write, and keep writing no matter what.”

I realised that this decision was the trigger for a change in my mental state that was soon followed by a flare-up of inflammation in my SI joints. The change in mental state was characterised by a subjective improvement in my mood, despite an objective increase in self-imposed pressure.

In other words, I located the exact point at which I had agreed to suppress any emotional resistance to achieving my new goal.

Reversing the decision

Having identified the decision that triggered the flare-up, I knew that I had to reverse it, give myself permission to relax and let my emotional resistance resurface.

This was not easy, because the whole point was that I believed “I have to keep writing!” My “just do it!” mentality had a lot of weight behind it.

But all the work I had done to find the trigger for my AS made it obvious that if I didn’t make a change I would just continue to suffer.

I reversed the decision by telling myself specifically “It’s okay if you never write another article in your life.” And “It’s okay if you are poor and unemployed for the rest of your life”.

These are things that I felt were manifestly not okay! But that’s exactly why I had to accept them.

I could feel my internal resistance to these thoughts, but I could also feel a kind of relief, a letting go of tension that I hadn’t been conscious of.

It really is okay if I never write another book, article, or blog post again in my entire life. It’s completely okay.

It’s okay if I never amount to anything in life. It’s completely okay.

Relief!

My SI pain went away as I progressively reversed the decision. From memory there were one or two subsequent flare-ups, but they were milder and I caught them early, reversing the relevant decisions behind them.

One final mistake

I didn’t make a big deal of it in my notes. I keep looking for the bit that says “Yes! Solved it! No more pain!” But it’s not there.

The reason is that in between flare-ups I had developed a different kind of pain in my lower back. This pain didn’t flare-up, it was continuous. I felt it in the mornings when I got out of bed, and occasionally triggered it when my back was under strain.

I spent a lot of time trying to overcome this back pain in the same way that I had overcome my SI joint pain, thinking they were the same thing.

Dr Sarno always insisted his patients undergo medical examination prior to utilising his psychogenic theory. The point was to rule out other causes of the pain.

I assumed my lower back pain was another symptom of AS, that it was psychogenic, and caused by stress.

But eventually I discovered the lower back pain was purely mechanical. It had developed as I tried to physically compensate for my SI joint stiffness – my lower back started to bend more and more to take pressure off my inflamed SI joints.

Conclusion

So that’s how I overcame my AS. I haven’t had a flare-up in 2-3 years.

I think the main lesson from my experience is that some people might have to specifically reverse key decisions in order to neutralise the stress and hence the pain.

I hope this is helpful for some of you with AS or those following Sarno’s theory on psychogenic pain and illness. I’m grateful especially for the late Dr Sarno’s work, and for Richard’s advice that really helped me become more systematic and narrow-down the precise cause for my pain.

Auto-Immunity: stop hitting thyself?

An auto-immune disease is, as far as I can tell, the disease equivalent of accidentally biting off a chunk of your own tongue.

My particular auto-immune disease causes inflammation in various key joints, resulting in mild-to-excruciating levels of pain that erupt seemingly at random throughout the course of the year.

Each doctor I’ve spoken to has been more or less firm about the association between stress or negative affect and flare-ups of the disease; firmly against any such association, I mean. There is no evidence to suggest that the progression of diseases like mine is in any way linked to psychological factors, though there is good evidence that the experience of pain can be moderated by psychological factors.

Needless to say, I’m not content with this and rest somewhat assuredly on the dictum “absence of evidence is not evidence of absence”, taking some confidence in what I know to be the limitations of evidential standards and processes, such that if I find a personal or subjective association, I’m not going to dismiss it on the basis of insufficient peer-reviewed studies.

At the same time, it’s somewhat dismaying to see people dismiss actual studies from a position of willful ignorance and wishful thinking. I’ve seen plenty of people embrace conspiracy theories or other combative attitudes towards established medical and scientific practices and institutions. It’s not a pretty sight. Ideally we should know and understand the things we criticise, and be aware of the limitations of our own knowledge, n’est-ce pa?

As such, I’m not going to tell people that their auto-immune condition is the result of stress and negative affect. What I can tell them is that I’ve noticed in myself that my bouts of inflammation seem to correspond with periods of self-imposed stress or pressure.

It seems I am of a temperament which is inclined to say to itself: “Now you know what you ought to be doing, so do it; do it without ceasing. Do nothing else. Nothing matters but that you do this, and do it diligently forever and ever, Amen.”

For example, I had a flare-up some time after deciding that I ought to pursue my writing more seriously. ‘More seriously’ as in, unceasingly and compulsively without any concept of an end point. On the positive side, that helped me produce an unprecedented number of articles – if I remember correctly: 12 published articles in a one month period.

But as my productivity began to decrease, the conviction that “I must write” slowly devolved from a genuine motivation into a mere sense of grinding necessity. Grinding is perhaps the operative word, as my joints inflamed and it became painful to move.

I’ve noticed since that the pain seems to coincide with these bouts of grueling yet unproductive urgency, the sense that I must get something done without excursion or delay.

Yesterday I noticed a growing sense of urgency relating to ‘getting things done’ with respect to domestic production. I’ve been meaning to make some cheese, but have struggled to find a good local source of necessary ingredients. The delay and the awful heat (42 degrees C yesterday) left me feeling unproductive, and this morning I woke up with the telltale stiffness and pain in my lower back.

As tentative as I am to try to dictate the cause of my illness to others, I’m equally cautious in extolling a particular treatment. I’m not trying to sell anything.

However, I have found it personally beneficial to treat the pain as a symptom of the underlying urgency, and therefore to treat the urgency directly. I do this by making a conscious effort to defuse this compulsive state of mind. I reflect on the fact that it doesn’t actually matter if I make a cheese today/write an article tomorrow, or if I do these things next month, or in all honesty if I never do them ever again.

By ‘reflect’ I mean it’s not enough to simply tell myself that it doesn’t matter. I have to really feel that it doesn’t matter, because feeling it means I can let go of the stress, tension, and urgency. Feeling that it doesn’t matter reveals how truly tense and stressed I have become – winding myself up into a state of impossible and unnecessary tension. I can feel the tension now through my whole body, yet I was oblivious to it until I started to focus on ‘letting go’.

Does ‘letting go’ fix the problem? Objective analysis would be nearly impossible. The factors at play are highly subjective, and would be very difficult to study or isolate under experimental conditions. But like Pascal’s wager, if I’m wrong about the connexion I’ve nonetheless benefited from becoming aware of my stress and tension and reducing them to more salubrious levels.

Feeling more relaxed, happier, and healthier is a pretty benign form of treatment. There’s not really anything to lose.

Does the pain go away? As strange as it might sound: I hadn’t really noticed. In hindsight, it must go away because I notice its subsequent return. But I’m usually so caught up in the great sense of relief and relaxation, the sheer pleasure of ‘letting go’ all the stress, strain, and slowly mounting pressures of life, that the pain, the stiffness and the sense of disease seem to just dissolve away.