Friday, May 31, 2013

Ankylosing Spondylitis


This is a long post.

I have a form of rheumatoid arthritis called Ankylosing Spondylitis. It primarily affects the spine, and causes pain and decreased mobility.

I’ve had AS since 1993. My pain and stiffness increased over the years from a mild annoyance to a disturbing level of daily pain. I would wake up in the middle of the night with my ribs frozen into place, leaving me barely able to breathe. I could not do even one sit-up because my back would not flex. Simply rolling over in bed was an exhausting ordeal. Visiting a dentist, it would take at least five minutes for my spine to relax enough so my head would hit the back of the chair. But worst of all, pain occupied my mind almost constantly.

My doctor who diagnosed me clearly looked upset as she informed me there was no cure and handed me a prescription for mega-doses of ibuprofen.

Eventually I was on pain suppressants round-the-clock. By 2001 there was a growing list of things I could not or simply did not want to do. I looked gaunt and sickly.

! Let us all now praise the internets!

While reaching something else, a Doctor Ebringer in London discovered that if his AS patients stopped eating starch, their pain and stiffness diminished. (I’ll save you from the explanation why...)

A few of the people who found relief this way publicized it on the web.

So in October 2001 I started a no starch diet. I was able to stop taking all pain killers by March of 2002. By 2006 I had gained back all my spinal mobility and to this day experience no pain at all unless I eat a basket of fries or some of that really fabulous double chocolate cake.

But wait.

Most sufferers of Ankylosing Spondylitis are not experiencing this relief because their doctors will not suggest the diet. If asked, doctors will inform you there has been no research to prove the diet’s effectiveness.

Yes, there has been no research done on this cure for AS symptoms. Drug companies fund research. I have been off drugs for my AS these last 11 years. 

Ooops! What’s wrong with that scenario?

I have informed doctors and rheumatologists that I am on a diet which has eliminated my pain and stiffness and have received patronizing nods but no questions. A patient’s real experience is clearly not as valid as a drug company’s brochure.

So that is why I am writing this very long and boring post. In the hopes that a fellow AS sufferer will find it and begin their life again, as I did. Or perhaps someone reading this knows a friend or family member who has the disease and will email a link.

Because you will not hear about it from your doctor. They will hand you prescriptions for mega-doses of drugs, and sadly tell you that is all you can do.

2 comments:

Sarah Romano Diehl said...

Great you came across this solution and hopefully someone else can be helped by your experience Paul.

The pharmaceutical world is so dirty.

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