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Joined: Jun 2016
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hazt Offline OP
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Finally signed up rather than lurking around. My name is Harry. Ive just been diagnosed with AS about 8 weeks ago.
I am HLAB27+ and had non specific sacroilliac/buttock pain alternating sides a few times over the last 2 years. Nothing that was bad enough to stop me from doing what I was doing or interrupt my day.
I am naturally very skinny and began weight training a few years ago and eating everything I could to put on weight. Naturally this lead to a very starch based diet that I believe led me; a genetically susceptible individual to develop a classic representation of AS.
Naturally from someone who was extremely active and young this has come as a major shock i.e "this doesn't happen to me, it happens to other people"

But at the beginning of april, this current episode, or what I now know is a flare has begun. It started with excruciating left sacroilliac pain that left me unable to work or walk. That stuck around for about 6 weeks, even after being put on diclofenac 3 times a day and having an official diagnosis.
Upon realising there is no cure, i began researching alternative methods. I came across Dr Ebringer and was very interested.
I began researching the molecular mimicry and interplay between klebsiella, leaky gut, autoimmune conditions and etc etc.
Lets just say I am a subscriber to this principle upon reading innumerable testimonies from people a lot further along in their AS journey than myself and still have seen a major reduction and even remission.
I literally put down the toast I was eating and have been starch free for about 7 weeks now. It's been hard. But the idea of progression is a very good motivation to stick to the diet.

I have not experienced any lower back symptoms at all, ever, so far. Only sacro pain that has cleared up as of about 4 weeks ago. However, now my shoulders and one ankle are majorly inflammed. I havnt not been able to drive for a month now as I am experiencing severe stiffness in the shoulders. Severe. I have no symptoms in my back or sacroilliac or pelvis. Just in my shoulder and right ankle, which is swollen.

I am currently still on diclofenac and sulfasalazine, building up to 4 tablets a day and maintaing rigerous adhereance to the NSD. I just find it strange that I have no lower back symptoms at all, no morning stiffness, all my pain comes from shoulders and ankles.

Looking for anyone else who has been through similar circumstances?.
Thanks everyone.

Joined: Jul 2013
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L33 Offline
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Hi Hazt, Welcome to Kickas

I have had AS now for more than 15 years. My AS symptoms started when I was about 15. It began like you with alternating pain in my SI joints and hip joints. I had this pain for a few years then it went dormant during high school and stated again in collage.

It got really bad at one stage in my last year in collage where I was unable to walk. I stayed in bed for a month only getting up to eat and go to the toilet with the assistance of an office chair helping me walk. Due to the high amount of pain my doctor at the time gave me steroid injections directly into my hip joints. In a few minutes after the injection I was running out the doctors office and into the car.

Touch wood, I never suffered with my hip joints again. However fast forward to 2016 and during the last 3 years, my AS has progressed considerably and my whole spine and neck are now involved. I am now 32.

AS can manifest itself in different ways to different people.In my case for many years the pain was hardly noticeable but that changed for me. In the early days AS pain seems to linger in the SI joints and then it gradually moves up the spine, the rib cage and then the neck.

When I had SI and hip pain I also had pain in my knees due to limping but that's no longer the issue.

Advice I can give you is that do what is working for you,
Stay mobile and active take up swimming if you can. It's very good exercise. Research, Research, Research. The more you know early on will empower you in future. Finally don't give up.

You can send me a personal message if you would like to know what I have learned about this disease.

All the best,

Lee


HLA B27+
Have AS since the age of 13.
Diagnosed in 2005 at the age of 22

Joined: Oct 2007
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naj Offline
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Hi, just wanted to say welcome. I'm really glad you found your way here. I've definitely experienced times where one pain would go away, and then a joint (like in my hand) would swell for some time before that subsides. Hopefully soon your ankle and shoulder will feel much better. I think it was Dragonslayer who advised me, when I was brand new, to take a long view and at the same time take it a day at a time (paraphrasing, can't quite remember the actual words). This has helped me commit to no starch but at the same time try to accept that certain areas can flare up with inflammation even when I don't know why.
Best wishes!


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Welcome! Sorry to hear about your troubles.
For me low-starch, or even no-starch, did nothing. But it seems AS is as diverse as we are, so I don't think NSD nescessarily is the wonder cure a lot of people here on the board seem to think.
What helped me was running, biologics (though I've been on and off them), and most of all weightlifting. I have a topic about how I got started, so you might wanna check it out.

Good luck with everything.

Joined: Sep 2001
Posts: 8,397
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Lon Offline
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hazt- welcome!
You have already read some important 9information.
NSD does make a difference in my life - but I have not stayed on it long enough to get relief.

Yes, exercise does play a huge part in my life. But there are months when I simply can not exercise until I sweat.

keep us posted!


I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
Joined: Sep 2004
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Black_Belt_AS_Kicker
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I am sorry to hear about your diagnosis. AS and other spondyloarthropathies are considered diseases of young people. Two of my kids were diagnosed in their mid teens. I began having symptoms in my teens as well, but was not diagnosed until things became unbearable in my early 30's. Since your disease started in your teens, it is possible that you will see features and symptoms that are more common in pediatric patients - like early ankle, knee, and shoulder involvement. These symptoms are treated the same way with NSAIDs, DMARDs, and anti-TNF medications. Gentle stretching and consistant exercise are two of the best things you can do for yourself with this disease.

Joined: Nov 2001
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Very_Addicted_to_AS_Kickin
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Hi and welcome to KA. Been a while since I was here, so I feel new, but I'm glad you found us. smile

You say you've never had any back pain, but you actually have. Sacroiliac is lower back and is often the first place that is affected in text book cases of AS. I had SI pain starting when I was 15, but wasn't diagnosed until I was almost 40.

I'm not sure how driving would be impacted by stiffness the shoulders. If you turn from the waist to check your blind spot, that might help and is actually the place your body is designed to turn.

Anyway I'm glad you found KA. It is the best site on the web for information and comfort.

Warm hugs,


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"

Joined: Jun 2016
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hazt Offline OP
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Well my driving is impacted because my shoulders are essentially locked at my sides. Any movement upwards is excruciating. Washing my hair is nigh impossible let alone exerting force through the shouders to carry something, god forbid driving.


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