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Oct 6th, 2025
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If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
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Joined: Mar 2012
Posts: 751
Magical_AS_Kicker
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Magical_AS_Kicker
Joined: Mar 2012
Posts: 751 |
If you are coming from a place of fear, then you can be afraid of anything. But if you are coming from a place of wanting to learn all you can about all of the possibilities out there, then kickas can provide a wealth of information (and friendships) not found in many doctors offices or dinner table discussions. I have appreciated every tid bit I have read on here, even if I didnt agree with all of them. And I am so thankful for all the people who donate their time to answer questions. Thank you!!
I'm now a KICK AS (and Kick IBD) success story!! After going low starch Paleo to heal my gut, I can now eat nearly all starches, grains & foods without inflammation, flare-ups, or pain. I used a modified SCD diet approach (minus dairy! plus cacao ♥). Cheers to healing & thriving again! I blog at http://www.forestandfauna.com/about/
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Joined: Jan 2012
Posts: 16
New_Member
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New_Member
Joined: Jan 2012
Posts: 16 |
We are grateful for all that we have learned in this forum.
My son was diagnosed almost three years ago (when he was 17). We started immediately NSD and the result has been amazing. After 1 year in the diet, bone edema caused by inflammation of the sacroiliac joint ... had simply disappeared.
Now he is fine, free of pain by 95%. Just some naproxen in the morning, when he feels a little more stiff neck or back. Hopefully someday he can live completely drug free.
My husband, after 30 years with AS, has also greatly improved their health through diet.
I hope that one day they themselves can share here with you their success story.
Meanwhile, I thank them all.
health
Maiga
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Joined: Sep 2001
Posts: 457 Likes: 1
Warrior_AS_Kicker
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Warrior_AS_Kicker
Joined: Sep 2001
Posts: 457 Likes: 1 |
Hi, MarkyT:
AS is a systemic disease; it could eventually even get to Your eyes and beyond. It affects every tissue in our bodies.
The point Your physician was making is that the visible damage is confined to Your SIJ--the permanent damage takes time, pain, and inflammation is the process that results in the damage.
A competent rheumatologist should be able to tell You how to PREVENT further damage, but the pain You are experiencing in Your spine is the activity of AS that will eventually lead to "poker spine" or "bamboo spine" and even pseudoarthropies if You are as unlucky as myself.
This pain in Your spine means that Your treatments are not effective, and eventually the damage will be revealed by X-ray: "Lipping," "squaring," then on to osteophytes and syndesmophytes.
There is much more that You can (and should-) do on Your own than anyone else, including the best physicians, to affect the eventual disease outcome. If You 'learn to live' with the pain, You will eventually need to learn to live with the damage--and spinal degredation that could require multiple surgeries. Better to learn to defeat AS--and do this early enough to save You much anguish!
HEALTH,
John
every time I pop in here this guy is frightening the living daylights out of someone. DS why do you ALWAYS give the people here the WORSE CASE SCENARIO? most of the folk here came for a little reassurance and HELPFUL advice not to be scared witless by your OTT prognosis I wish someone had been around with the info DS gives out to scare me 40 yrs. ago. I was totally fused when I first started hearing about it. There is plenty of comfort posting here, along with hard facts. We need both. J.R.
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Joined: Nov 2011
Posts: 108
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Nov 2011
Posts: 108 |
The best thing you can do is stay active and keep moving. It's hard to fuse if you are moving. I waitress for that reason. I hate to exercise so waitressing keeps me mobile and works every joint in my body. Motion is lotion. I still have small flares every once in a while but I just keep moving.
John is right about just ignoring the pain. Somehow you have to resolve the inflammation so you don't fuse in that area.
Teri http://agluten-freemama.blogspot.com/Pain since 1989 Mis-diagnosed until 2011 SI joints somewhat fused, lower back is trying to fuse Osteoarthritis in hips Follows NSD Takes Ibuprofen only when needed Loves to swim. Still working 5 days a week as a secretary then 5 nights a week waitressing.
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Joined: Sep 2011
Posts: 526
Veteran_AS_Kicker
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Veteran_AS_Kicker
Joined: Sep 2011
Posts: 526 |
If you don' like Iit here, just go away silently without jumping down someone's throat. Nobody will miss the drama....
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Joined: Apr 2014
Posts: 53
Active_Member
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Active_Member
Joined: Apr 2014
Posts: 53 |
Read up on "enthesitis", the hallmark of AS.
When my inflammatory symptoms were at their worst, a physio suggested we try IMS (intra muscular stimulation - deep needling) and this aggravated the enthesitis so badly it almost put me in the ER.
Kleb_Slayer, you ROCK! I really needed to know about enthesitis. Will be talking to my doctor about it. And while I'm here ... I've noticed this condition in many of my clients and I whisk it (the inflammation) away with a treatment called Gua Sha. Trouble is ... I can't gua sha my own spine. Search "Bruce Bentley gua sha" for the kind of gua sha treatment I'm talking about. It literally "lifts" the deepest of inflammations (at the bone) and whisks them, gently, to the surface 
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
Yes here.
Those areas that are sore when the chiro presses on them, he tells me they are a bit "stuck" and he gently presses on them til they start to feel better.
It could very well be the enthesitis; I know I have that everywhere in my body.
Last edited by Sue22; 05/06/14 02:58 AM.
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Nov 2001
Posts: 18,187 Likes: 7
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,187 Likes: 7 |
Hiya, surely you didn't mean to post this to MarkyT, who merely asked the initial question but had nothing to do with the responses to John's post???? Love and Warm Hugs,
Kat
A life lived in fear is a life half lived.
"Strictly Ballroom"
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