My life with Ankylosing Spondylitis
Tһіѕ іѕ a video аbουt һοw іt developed fοr mе аחԁ һοw I deal wіtһ іt day tο day.
Dr. Gary Vilke discusses tһе areas οf inflammation іח ankylosing spondylitis аѕ well аѕ kyphosis. 3D animation contained. Fοr more information οח ankylosing spondylitis аחԁ related diseases, visit υѕ аt: www.spondylitis.org
I really agree, I think the same thing about my child. The thing is we are born into a life where more and more is good tasting and less healthy. I’m not sure I have the strength to make the shift into completely natural food all home prepared. @LeadingMyRoxanne I have high hopes there will be cures to this thing in your lifetime. Take comfort in that many people with AS live long and function normally.. Best wishes.
i cant sleep easy at night…my upper body…chest feels as if it is getting real tight….my doc has told me to get the HLA marker test done, it has not come yet but the provisional diagnosis is as. i wonder if chest tightness and clamping up and dizziness while sleeping are also part of the complex of symptoms. right now i couldnt sleep …felt dizzy lying down …so woke up to google the disease and found your video.
i cant sleep at night…my upper body…chest feels as if it is getting real tight….my doc has told me to get the HLA marker test done, it has not come yet but the provisional diagnosis is as. i wonder if chest tightness and clamping up and dizziness while sleeping are also part of the complex of symptoms. right now i couldnt sleep …felt dizzy lying down …so woke up to google the disease and found your video.
@LeadingMyRoxanne As far as exercise, i would do what ever you can within your pain range. Movement is the key. I have always had physical jobs and was active in Martial Arts for most of my life, even though it was painful. I would say be careful of getting injuries as they usually just turn into chronic problem areas later. A.S. is bad for that. I wish I had not been such a daredevil and macho about pain and injuries. It was fun though! Thats what matters, just live your life man. Screw AS!
@LeadingMyRoxanne Man it sucks to get the diagnosis at 15. I guess I could have gotten it then too as thats around when I started to have pain. I am very gratefull that I did not get it till a fews ago, as i think it would have had a bad effect on my mind. I saw it happen to my best freinds brother when he got diagnosed. He was 26 and he just said F, it. Now he is really bad off and he regrets having that attitude. I am running out of space so let me go to the next window!……………..
@ASsufferer I feel the same way, I have a son and I wish I had the strength and determination to be one of those moms who is 100% organic mostly whole foods lots of raw foods all the things I know should do for him. I just found out I have some kind of brain lesion too and the doctor isnt ruling out some kind of immune thing related or peripheral to AS. Right now I”m still mobile and normal acting for the most part and I just try to give thanks every day I’m still alive and usually functional.
Thanks heaps for putting this on youtube.
I recently got diagnosed with AS, i’m 15 years of age.
I’m really worried at what could happen, doing some research etc.
And i really would like to know what i could do, to make it better,
you said gentle excercise and stuff.
would swimming be ok? and I play football. (soccer) is that ok?
thanks mate
Aaron.
@StarsintheRaven I agree, when I think I have a solution then the problem seems to change. I have not ever fasted but i do think our diets are killing us. I get emotional when I look at my 2 young ones and hope I am not hurting them with the foods they eat. I try the best, but its so hard in the world we have created.
@paulgrayuk I never heard of that one but I have heard of injecting a mixture of Novocain and cortisone into the affected joints. its not here in the US but its getting recognition overseas. it helps to rehab the joint.
@paulgrayuk What was it about your legs that started to fail?
@AnushPele I have had to cut back on the out door activities. I cant move like i could before. I always kept my back my business and when I would have a bad flare up I would just suffer through it. I hated to have people baby me and think I could not do things. I wanted to be the one to make the choices on what I did. I realized though that my friends meant well and the funny thing is all the advice you get from people along the way about what your problem is. No one thought it was AS though.
@AnushPele It has had a major effect on my social life as well as the daily activities and work. I always had rather hard physical jobs and I dont know if that is what wore me out, or kept me from rusting solid. I have to plan my activities around my back. I have to carry a folding chair and a blow up matress in the trunk just in case I need them. I used to travel alot for business and I found that bed hopping was killing my back and hips. For me I have just adapted…………………..
@sonamattu9 Thanks man, I need prayers I can get!
God bless you also.
@Chapps Thats is man, you just have to put your head down and charge. When I tell people about my condition and then they see me working hard, they think I am either lying or crazy. I tell them whats the use of sitting down and feeling sorry for myself? I tried that and it just made things worse. I had to realize that waiting for the pain to go away was making my life hell, and that being in pain was going to be my baseline. I just go easy and work smart. But no matter what you have to move!
Thanks for putting your story out there. I know with me diet might be a factor as when I fasted in the past (before diagnosis) I would suddenly feel like I was unfolding and could move around and all these symptoms went away. However after a big flare put me out of commission and I got diagnosis no diet change has helped. I guess it is more than one factor and no real singular answer.
One thing that strikes me as a possible cure to this is the usage of low-dosage snake venom (cobra non nerve type) diluted and built up over time to kill the bacteria that is associated with this and also to educate the immune system to behave itself.
I haven’t seen any use of this approach to curing this and if anybody has then please share there experience. Though seems a logical solution to this problem. I shall be pursing with my doctor though I’m sure the NHS will fall short on this.
I have Aspergers and that in some ways helped my Ankylosing Spondylitis and hindered it. On the plus side I have a extremely high tolerance to pain and on the negative side I have a extremely high tolerance to pain. Upshot was I wasn’t diagnosed until my legs started failing. I’m in my mid 40’s.
Thank you for sharing your story. It is very helpful to understand the condition. Could you tell us how AS impact your daily activities, work and social life?
i’m now taking massage therapy & physiotherapy both.may be god will listen ur pray…
i’m now taking massage therapy & physiotherapy both.may be god will listen ur pray…
i’m now taking massage therapy & physiotherapy both.may be god will listen ur pray…
@jalopotan The only perfect child huh? That would scare the hell out of me!
I would be wondering when my turn would be,.
@jalopotan The only perfect child huh? That would scare the hell out of me!
@sonamattu9 Wow that sucks man. I feel for you and I pray that you will get better. Have you tried any therapy?
@shovelthedirt I loved riding my bike but the back pain is a bad when I do. I can ride the sitting style bikes at the gym, but I dont want to buy one of those for the street. Thanks and good luck to you!
Hi Folks I got AS and was diagnosed in Nov 08 yet have had it for 20 years now. I watched this vid and thought “oh look thats me … but not for much longer” my hunch and neck is so bad I am having surgery done to correct it. Been on Humira now for 12 months and it has helped to turn me around I hate walking around like I am nearly 100 when I am only 36.
Brilliant… I really look forward to having a bamboo spine! Ain’t happening! Even if I have to stretch EVERY FREAKING DAY.
Yep, it sucks, and, yeah, there are a whole lot more areas that get swollen and hurt like hell (can’t use hands sometimes, feet, freakin’ Iritis 5x/year, swollen jaw, etc.).
But for someone who’s been suffering from it for nearly 15 years, I’m really lucky, because my spine shows very little deterioration. Maybe all of the years of insane workouts and weight lifting did some good. Dunno. But starting Remicade next week, so cross your fingers. I’d sure like to have my life back.
i also have AS,its tooooooo painfull….i can’t explain my pain’s areas and my pain also….pray for all patients
lol.. oh man.. I wish I was one of those who can say…. “Yeah, It’s pretty painful at times” lol.. Not too say your not bad.. But Some are bad.. And some live in hell. I like this video. Except it’s missing about 20 other areas that hurt. lol Maybe more.
Yes, I also have Ankylosing Spondylitis. Was diagnosed back in 1991. yeah, it’s pretty painful at times. True, there are a number of common symptoms, but not all patients are the same. Lesser known symptoms include: anemia, weight loss, fatigue, possible heart and lung problems. I hope someday a cure is found.
I have AS and let me tell you, it SUCKS !