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Sean's story - 2012
I am quite sure that my problems started in my early teens - I used to sit in school assembly on a hard tiled floor and remember the discomfort of having to sit in a cross legged position - my back was stiff even then and I found it hard to sit up straight.
Later in my teens at about 15 - I would get the odd pain in my rib cage and neck and sometimes a cricked neck when turning around. This progressed to some pains in my back - especially my shoulder blade on the left hand side.
By the time I was about 19 - this progressed to worse pain in my ribs, sacro joints in my lower back and stabbing pains in my shoulder joint (inflamed rotator cuff). When I drove for long distances my sternum would fuse with a hot sore sticky crunchy glue and would click with a furocious pain when I stretched.
I lived at home with my Mother at this time - and as any loving mother would took me to the doctors to discuss with a GP - I had X-rays in Crawley and saw a Rheumatolagist - I had a blood test to see if I was hla-b27 positive - about 90% of all AS sufferers have this gene. I was tested as negative and told that I had a bit of Osteoartritis in my spine and some symptoms of rheumatoid arthritis - they called it non-specific.
I was prescribed anti inflammatories - I was in pain but because of my fathers own experiences (AS) and the terrible side effects and little benefit they had for him i took the very tough decision not to take them. I had a gut feeling. Pain is personal thing, only each of us know what we are experiencing or can endure. I did a lot of stretching exercises and developed a rolling around on the floor technique for making my spine click with a pillow under me - with hindsight it was a bit like self osteopathy. I would pick the time of the day when the inflammation was less - which was usually bed time.
My Mum was chatting to a colleague of hers that had been to a clinic in Banstead, Surrey where a real Doctor (I forget his name - but my have been JR Marsden) - he was doing studies into the effect of diet and food allergy on illness including Arthritis. She arranged for me to go and see him and he seemed sure that he could help me.
I was put on an elimination diet for about 2 weeks - I was allowed cod, pears, rice and yams ( sweet potatoes) apparently considered by my doctor to be the most un-reactive foods for food allergy - and I think that was all apart from water. I remember going to Haywards Heath Market with my now wife and smelling jacket potatoes from about 1/2 a mile away and a coffee from 50 paces.
This is where I am going to sound a bit stupid - as despite feeling a bit better - I weakened and gave up. The trouble was in these earlier days at the time the condition used to ebb and flow anyway and I think I was guilty about the consultation fees my mum was paying. It wasn't available on the NHS.
I tried to keep fit - going to the gym and doing light weights and this helped me in my early 20's - I took standard over the counter pain killers for some flare ups but I was on a downward spiral - the damage gradually built up and I developed some lack of movement in my spine and rib cage. I got pains in new places like underneath my foot - but the very worst was sacro lower back and hip pain. There was an almost constant soreness in my right hip - and I developed a limp at times because of the stabbing pain.
A strange symptom was a fibrous sticky feeling from by buttock area down the top part of my legs - it would feel like hot little tearing as the tendons moved. I used to come home and just sleep - I was always tired especially after eating.
At 24 - I went to work abroad for a year - I got very fit, I did sauna at least twice a week after exercise - and did swimming. I had flare ups from time to time but I was in good shape. The adrenaline and excitement of being abroad saw me through.
For personal reasons I let my fitness slip on my return to the uk and when I was 26 the inflammation got more regular - and i would come home from work and have to lie on my front - doing exercise with this pain was difficult. I used to ask my wife to stand on my upper back - nothing kinky - it just used to help me.
Another conversation this time between my wife and one of her work colleagues - changed my life.
My wife's friend had been bedridden with a form of ME - i had heard before that she was in a serious state. She had been taken to a diet and food allergy specialist in Canterbury - and she turned her own life around with the treatment and advice that she had been given.
I owed it to myself to give it a try - plus I had money now - and this was not cheap - perhaps £25 a visit. I went to an osteopath and had a massage the same week.
I went along and was sceptical (and still am about the testing methodology) but the results and the advice I got was to cut out wheat, corn, dairy, coffee, red wine and I got sold a lot of supplements. I moaned at my wife - I was cynical about the cost but I stuck with it for a whole week very strictly.
The supplements I was given (please do not take yourself without advice from an expert) were -
> Biocare Mag2 1Cal - 2 with each meal
> Biocare Vita Manganese - 2 with each meal
> Zinc and Selenium to remove heavy metals from my body
I followed the diet rigidly for 2 weeks - and took the vitamin supplements (I still don't like taking them and have cut down massively today) and to my amazement I started to feel better very quickly.
Trouble is I was an addict - bread was my staple and a lager or a pint of Guinness was my social drink - but each time I was naughty! I felt it and the less of an allergen I had the more I felt it when I did have it. One summer whilst walking on the south downs with friends my hip was so sore due to pint of Guinness I had consumed the day before that I said - no more wheat, corn, barley for me.
Incidentally i revisited the osteopath that had seen me a few weeks prior and he could not believe that my back was the same back he had previously seen!
I have developed a passion for trying to understand the mechanism of my own disease - which is
1) likely Klebsiella
2) likely gut damage due to bacteria and possibly gliadin (I am very allergic to wheat - it now gives me nose bleeds as well as flares me!)
3) immune reaction to both bacteria exotoxins and foods that I have developed allergies to as a result of my gut damage
4) probable risk of further food allergies
The most important website I have ever found is called DOGTORJ.COM - his research and enthusiasm has been inspirational to me on my journey back to health.
I will watch my children grow up like and hawk - and at the first sign of auto-immune illness will insist that the NHS allergy tests. Sorry for the long story - but mine is a bit different to others here. Best of luck to you all - and stay positive!
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