Early symptoms of occasional lower back pain, but after serious bouts of reactive arthritis RA, i developed full-blown AS. RA symptoms were regular periodic inflammation of either knee - major event, totally painful, huge swelling, destroyed employment, relationships and left me with restricted range of movement in right knee.
Previously i'd had four major gastric and two urethral infections.
Had some excellent medicos for early diagnosis and correlation for my first iritis event. What to expect later was always advised.
However, when i asked the "top" Rheumy for a medication to treat RA only at the time of flare i was told no way, must have a pill every day or none at all. I chose none and toughed out each event with occasional pain-killers and rest - used up all sick leave and took many days off without pay - every bloody fouteen days...
Prednisolone did stop the knee inflam once i got a better Rheumy, but i suffered knee damage from the many severe inflammations.
I took no meds or very light meds for years and gradually increased dose, especially if pain woke me at nite. Took NSAIDs, naproxen or ibuprofen, so i could exercise - prednisolone only if a knee flared.
Played with the London Diet when i heard about it (1995 or so) but loved cakes and pizza and noodles so it had little effect.
Eventually i found myself not sleeping well and needing to increase my naproxen dose - i was ready for a change as i could feel kyphosis creeping up, i was always stiff and could not escape pain to freely enjoy sex, running, sport etc. and was feeling ten year's older than my age. Sneezing and coughing were horrendous pain events in my chest.
Unlimited internet time let me read every KAS diet post over a period of three months (on light duties) so i started NSD, cold turkey on meds and regular exercises. My first exercise class on a mat had me in agony and frustration trying to roll over in total body pain, but i knew i needed the bodywork. Four days of NSD saw a reduction in pain, then a gradual build up again.
I decided to take one NSAID pill, the pain went for four days, then slowly rebuilt. This continued for 6-8 weeks - the pain dwindled to an inconvenience mainly around my neck when i ceased meds and apple fasted a few times.
I researched food, tropical fruit, digestion and inflammation, physilogy, genetic markers, metabolism and eskimos for months, years. Still going.
My remnant pain was annoying so i eventually found dairy to be the main reason and it seems to show up as neck inflammation. Even yoghurt affects me and i have discovered i do not tolerate dairy protein - casein.
I lived for months on simple foods - chicken and cabbage, fish and coconut milk, lots of ginger lots of greens. It worked, i eat fats of almost any type and spurn any starch or dairy.
The absolute best thing i did was to take control, be proactive and own my disease. No-one else was in the position to sort it out so i did. I discovered many things about the human body, many more things about my own and regained ten years of apparent degeneration.
The main thing i learnt and emphasise is that AS is a disease of the digestive tract. We have GIT damage. Bacteria, enzymes, sensitivities, nutrients, physiology and the humble glucose ring control our quality of life - learn a little about it, get on board.
Thanks for all those old posts - John, Arjan, Gerard and others, even JCW
Thanks everyone for continuing the input.
For those who have only minor success, i'd suggest an austere and simple diet for a few weeks to minimize errant starch. Any success even a small one brings a major boost to dietary motivation.