My Story Ankylosing spondylitis

Living with Ankylosing spondylitis

Category:

People & Blogs

Tags:

• Ankylosing
• spondylitis
• back
• pain
• sleep
• disorder
• spine

[ASsufferer]

I was wondering if i could ask you a few questions, I am 41 now and I am starting to notice some problems with my legs like lack of muscle tone and general weakness. I am scared it is the AS, but my knees hurt so bad I wonder if its just them not being used as much. When you were in your early 40's, how did AS effect your legs? I have started to scale back my medications as I can see that it is a one way road. if you would be so kind as to watch my videos and tell me how I compared to you?

[namtak47]

@ASsufferer The only true way to know I think is to get and xray. My legs are affected because of my spine, I can't walk fifty feet without my legs just turning to jelly. Movement is the only thing you can do. Good luck to you.

[namtak47]

Sorry for the audio part of the video, cheap cam!!! But I hope at least I got my message across.

[eatmoreraw]

Other things that helped me are, ergonomic seating with lumber support.

Gentle stretching and twisting exercises whilst laying on the floor.

Avoid lifting and twisting whist getting up.

Stand up to sneeze.

Exercise, like walking or running if you can do it.

I used to get pain with cycling. I've been better a few years now, yesterday I cycled 75miles (hilly) and had NO back pain.

Doctors can't do anything, be we can! We need to change our food and lifesyle. It's never too late to stop the rot.

[eatmoreraw]

I have recovered FULLY from spondylitis.

I had a very thin lower back disk. I suffered years with back severe pain. Not sure if it ever fused. Things that helped massively are drinking more water and a low fat raw vegan diet. Check out the 80 10 10 diet. I also now eat complex carbs like potatoes and rice. I eat NO fat food.

I changed my diet due to chronic fatigue, IBS and depression. But it also got rid of loads of other things including spondylitis symptoms from which I am FULLY recovered!

[mirrar01]

This guy knows what he's talking about. The spasms are the worse.  I have AS also.

[goofygirly2010]

I have A.S. too, if you haven't had the HLB-27 disease factor test and you think you may have A.S., demand the test from your Dr.! I have been on Enbrel and it did not help me, I have started Remicade infusions and can feel a difference after only 2 infusions.Keep after the disease, try everything until you find a treatment that helps you, even if only in a small way-you have to be an advocate for yourself and keep going till you find a Dr or team of Dr's that get this disease & are pro-active

[Emmachka2000]

Lovely people, THERE IS HOPE!!! check out the doctor who cured himself from AS, and he can help you. GoldbergClinic in atlanta. Google Paul Goldberg. He is Awesome!!!!! go to his site. Read. Be informed! He IS an answer to my prayers! if you come to see him, contact me and I'll help you with your visit to atlanta as I only live about 2 miles from his clinic. Lovely people, there IS HOPE. NEver give up. NEVER!!!!!! There ARE answers! God bless you!

[ASsufferer]

I feel for you my friend. Thank you for posting your story. I also have AS and I have posted my own 2 stories about a year ago. It was the best thing I ever did. I have spoken to and become friends with so many wonderful people with this dam affliction, and it has humbled me and given me tremendous hope. Thank you again. God bless you

[ELoney]

I've been diagnosed with AS for 18 years and im only 35. You're not alone. We need to find a cure for this !