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 Message Boards » » Ankylosing Spondylitis Page [1]  
lion4russell
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Any Tdubbers have it?

I'd give it a 1/10 - would not hit.

5/5/2016 3:38:37 PM

krallum2016
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My dad had spinal stenosis one time then he died

5/5/2016 3:40:23 PM

afripino
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11425 Posts
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that's the one where you turn into an ankylosaurus right?

5/6/2016 10:50:32 AM

lion4russell
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krallum2016 pix or it didnt happen

afripino i'm trying. i cant get any moonstones and so i fear i may be stuck as a spondyloid

5/11/2016 1:35:29 PM

krallum2016
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I'll see what I can dig up

[Edited on May 11, 2016 at 3:05 PM. Reason : the metal band names have gone too far ITT]

5/11/2016 3:04:38 PM

Sandman
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i have it

that's why im so grumpy about ncsu sports and stuff in general. it sucks. Mine is concentrated in my SI joints

the key is to not to give in to the docs by taking the biologics. that stuff is some of the most harmful meds created. AS the key is finding what types of food set off flare ups since despite what your paid pill pusher (rheum) says, it is all stemmed in your gut bacteria. I have found when I keep to a starch free diet, I have 0 flare ups and live a normal life. It is just difficult to keep that up.

I wish you luck

5/11/2016 3:15:37 PM

lion4russell
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I'm sorry to hear that you have it. Is your user name a reference to how it feels like there is constantly sand in your joints?

I've had it for 9 years and I have tried the diets and physical therapy and massage therapy and all of the homeopathic stuff. I got no relief from any of that.

The biologics have been a godsend for me. I still have pretty bad flare ups and still cant get out of bed somedays but its been the most consistent and effective treatment I've gotten.

5/12/2016 11:02:13 AM

Sandman
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I'm sorry to hear that and I'm glad you found something that is working for you.

so you tried going 0 starch 0 dairy and it still didn't work? I was almost at the point where you were at when I started that diet. The key was managing the klebsiella proliferation and taking good probiotics. It can take months on the starch free diet for it to be wiped out. That is the bacteria that our bodies attack, so the theory is prevent growth, prevent the AI response.

The klebsiella imbalance is typically caused by a stomach infection some time in the past that changed the bacteria balance in the gut for good.

Check out some of the stuff being done in the northern European countries. They are at the forefront on developing methods to battle AI diseases. The US is a complete joke. If you are in that much pain, it might be worth reaching out to the specialists there. They seem to have a much better handle on things.

5/12/2016 11:58:52 AM

acraw
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how are you able to incorporate physical activities with the disease?

5/12/2016 10:00:03 PM

Sandman
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Swimming is the perfect exercise for it. Reduction of strain on the joints, etc.

The key is to keep moving as much as possible as long as you can.

5/12/2016 11:01:04 PM

acraw
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how did you know you had it?

Jesus. I didn't even know this existed, although I have heard of 'spondo'
https://www.youtube.com/watch?v=RkyuphVynPA

[Edited on May 13, 2016 at 12:57 AM. Reason : b]

5/13/2016 12:42:44 AM

Sandman
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Growing up, I developed a pretty high pain tolerance due to my participation in contact sports so it is difficult to say when it started. If i were to guess itd be when i was 21. It took them 5 years to diagnose and i got the range of typical false diagnoses that people see with before being correctly diagnosed with AS.

My doc at Duke took a blood test and the hla-b27 marker showed up. 90% of people with AS have that, thus i was correctly diagnosed. The toughest part for me is living a healthy lifestyle. In my mid 20's i had gotten in incredible shape (6% body fat,etc) and shortly after is when it started to get bad. I think my actions of exercising a ton and eating right then may have made this not as bad as a lot of people's situations. But like I said, exercising every day and eating a 0 to very limited starch diet is tough and it is easy to get off track, and when I do, AS punishes me with a flare up that affects my next 1-2 months

[Edited on May 13, 2016 at 8:22 AM. Reason : ,]

[Edited on May 13, 2016 at 8:23 AM. Reason : ,]

5/13/2016 8:22:18 AM

jtdenny
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10904 Posts
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I have it. Started on humira a few years ago and run about 60 miles/month to keep moving. Still have pain and discomfort but nothing as bad as before I started taking humira.

6/18/2016 6:58:10 PM

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