i hear that. a lot of people around me thought i was just lazy. trying to explain to people (before my diagnosis) that it was like walking on broken feet. my heels, toes and tendons in the back of my foot felt like walk on nails. waking up in the middle of the night, having my wife help me to the bathroom to pee. i was treated much differently from my family and my wife's family after a doctor told me what was wrong with me.
Totally relate with you. I got it in my teens and everyone way remotely understanding the everyday struggles. There is stigma around AS that needs to break. I think it directly effects ones nerves and induces stress but compund that with emotional stress of people not understanding AS sufferes daily struggles.
I am grain free since 1 month and got to feel difference in 8 days,will continue with this diet After 20 days I started eating grains and on 4 day flare up happened stopped it and continued with no grain Also the flare up is happening from.having sweet fruits to have it in moderation
So true Brother.. I just got diagnosed and still struggling on how to manage this Pain which is Painful & Depressing.. However what U said about our loved ones doing that to us are the Unbearable truth.. Would feel stronger and more motivated to Survive if they understood what we are going trough..
I am patient of AS since 10 years but diagnose 2 years back, My age is 28 now, so i will suggest every patient of AS to be active, take medicines and go to gym everyday, do stretching and do not sit or sleep for a longer time, it will help you a lot and it will increase your mobility by 80% . Do not think you are alone Allah almighty is with you and He did not made any disease which is not cure able, be positive never loose hope ✌🏻
I took a desk job because I had been managing events for a decade and feared the future. That comes with it's own problems, but I have faith that my exercises and meds will stop things getting worse.
This is so beautiful. I almost started crying at work. It's a depressing video, but damn it is so true. Shout out to all my other AS people out there. Keep on living!
My boyfriend/love of my life has AS... He's 23 and has had both of his hips replaced, and now it's his shoulders that are starting to deteriorate. His spine is already fusing too. It is truly heartbreaking watching him go through all of this. Every moment of every day he's in pain, sometimes less and sometimes he tells me its unbearable. The worst part for me is that I cant do anything to help him, nobody can. I do my best by picking things up off the ground for him, doing all the heavy lifting, clipping his toenails for him, and other things. Sometimes we just stay in bed all day. If I had just one wish, it would be to take his disease away. I'm sending well wishes to anyone out there with AS reading this, I hope you all find something that lessens your pain.
I also am a AS patient and I'm 21 years old. sometimes i can't even bend over and put my shoes on. I would never wish this daily pain to anybody :(... yeah this does make you depressed.. you don't feel young anymore :(
I have this - alternating pain in either side of my buttocks, pain so bad it stops me from breathing - I've been limping on and off for 5 years now. The hardest thing is how unknown it is. At work I simply say I have a football injury because the truth is much to sad and too long to say. I don't even bother saying the truth to anyone these days. You know when you get a really bad cold and you just want to go to bed because when your sick you feel alone and no one can help... Well when you have this every day, every day you feel alone. Nothing really has a point anymore. Pain when I wake and pain when I sleep. What a wonderful thing we have called life. I hope others who see this video can help them with their goal, lots of silent sufferers like me in the world.Good luck to all of you
I have been where you describe. An AS patient myself I was unable to walk most of the time. For a 30 something BARBER this is not good. 3 kids and a great wife. Anyway wanted to say there is hope. I was lucky enough to have a great doctor at the VA and he found the AS had caused bilateral a vascular necrosis the deterioration. Two hip replacements, learning to walk again and nearly three years later. Med free and feeling great. There's always hope.
My husband has AS. It's heartbreaking to see him in so much pain. Especially as there is no cure. It's hard knowing he will have a life time of taking medication, all of which comes with a list of side effects longer than your arm. For everyone out there who has AS I'm sending you a big hug because it's so tough and there is very little support or understanding of the condition out there.
It made me emotional to read these comments. I've been living with AS pain a long time but I'm only now seeing that I'm not alone. It's hard to live when it hurts to breathe. But people think you look fine.
🙁SPONDYLITIS S- strong P- people O- overcoming N- never-ending D- disease. Y- Your L- life I-is T-therefore I-inspirational... S- stand tall! Nothing's is unbeatable🙂
I'm in pain every day and at first I'm telling my parents and family they listen and now it's like part of me haunting me and i can't tell everyone everyday same shit again and again so i stop complaining but end of most the i cry in dark room at night sleeping there wishing that next day will come without pain or with painless death. I have big dreams but my dreams will be never true. I imagine my past life without AS enjoying with friends playing football, cricket do all the things that i couldn't do express my feelings to school crush and see in people's eyes respect instead of pitiness for me.
Early diagnosis and stretching is the best way to fight with AS. Don't take rest when AS is active. Continue with your daily activities and be active don't give up 💪 we are the Worrier's.
I was diagnosed with AS in my early 20s. I still remember to this day, my friend that came with me to the hospital said, "oh, at least it's not cancer". Little did she know. Or that anyone who doesn't have AS know. It's sometimes like being sent to prison. I try hard to rise above but damn man, it's hard. This video shows precisely why
You are right.,this pain is not less than having cancer at 3/4th stage.it may not kill you but destroys your mental stage for sure, I've been through this
Diagnosed at 16. I'm 32 now. I feel grateful that I'm able to walk most of the time without painkillers.. I do light running and workout to keep myself fit.. life is not easy but we need to keep pushing forward..
@@himanshurai1674brother I recently diagnosed AS but i don't have sever symptom..I can run ,walk comfortable with little pain ...I live AS like without AS but I have always little pain in my joineds but not sever....for diagnose u should test your blood like hlb27,ra factor,CCP,crp
Hey man,I am also from India from where you have been diagnosed.because since last 10 years I am at high dosage of painkiller daily 2 times.but it often didn't work sometimes . So please help me to get out of this.
I have AS, My job can be very physical / labour intensive so people think I am a hard worker but in reality the only time im not in pain is when im constantly moving.
my dad had this from his late teens, some of his joints were fused had no movement in his neck and his spine was badly bent. was still the most optomistic man, always whistling and smiling even though his pain was constant. it's a terrible condition.
I've been dealing with the same condition for over 25 years. I've had 2 spinal surgeries as a result of this condition. I've had over a 12 spinal epidural injections because of this condition. I've lost several friends and several opportunities in life because of this situation. I don't understand how something can take away so many things and leave you with nothing. I've learned the you have to have a strong will and drive in order to get through even a single day much less a week or a month or even a year. I wish they told me in the doctors office that your mental fortitude is going to be your only strength because your body will be in a state of shambles most of the time. For all that have this disease remember we are not alone and we must find a way to work together even if it's just watching these videos to know we're not alone....😢
I was just diagnosed and im 25...used to be an MMA fighter. After reading this its like whats the hope it literally gets worse over time with no cure. I see no hope anymore
@@Dre1Way Don't give up, man. I trained MMA too, weights, cardio etc. I live for tai chi and whatever calisthenics I can manage these days. It's a tough mental battle, but I hope you can find your balance 🙂
One of the nightmares is when you’re planning to bed, you know you will never be able to get off form it. Every breath and small movements are killing you. Thank you for making this animation. It is so real I have to say. I hope there will have some affordable “Elixir” can free our life.
I was diagnosed when I was 17. It’s been two years now, and even with treatment, I’m just...tired. I’m tired of pain and I’m tired of limitation. I miss the old me...
This video describes my whole life, I have been suffering from AS since 15 years and still fighting the hard thing about it nobody could imaging the level of pain that we living with even with medication with no hope for a cure. My support to everyone whos diagnosed recently with this disease don't give up keep fighting!
With my pain, I don't go to work for weeks at a time. I sleep during the morning due to anxiety all night of hoping to take care of things in the morning. I mess my days and nights up. I feel shameful and anxious to find out what I can do about my problem.
Just turned 17 and this is what's been thrown at me😅 this video breaks my heart, I also think it's sad that hardly anyone knows about this disease. I know that before I was diagnosed with it I had no idea what it was! At least I'm not alone with it I suppose!
I was diagnosed with it when I was thirteen. Other kids in school used to tease me saying I had butt ache 😂. There was a time when I got bedridden for two weeks straight. Not being able to move my body because every little movement would hurt like as if I was being electrocuted. I had to stop dancing and playing football because of it. Anyhow, it’s been 9 years now. I’ve been doing physiotherapy exercises and hoping that the pain won’t come visiting again anytime soon. Btw I do some light sports at times just to make sure I stay active and healthy. You’re definitely not alone. :) We’re all in this together. I just wonder how I’ll deal with this as I grow old.
this is what we are facing, but the thing that motivate me to live with this AS is that many people have their disease, some are more danger than AS. but what i m worry about, i m 29 and not marry yet, how can my future wife will accept and understand my situation
This is such a true fact... BUT so depressing to hear out loud cause it's like being trapped in an existence of relentless pain and no one understands IT IS LONELY and it can mentally deplete you from any happiness if you think about how your trapped in this vessel of aching pain with no way out.
I was diagnosed with AS last year. And I know how painful it is. But regular walk and exercise have made life easier. I'll continue working out and also I am planning to start yoga. I am very positive, I know I will defeat it.
Did you start the yoga? I do what I can, tai chi too and I feel like I'm doing myself harm, but my consultant reassured me that I'm doing the right thing persisting.
I have AS. I've been fighting it every day for 53 years and at times faced the deepest despair. It has defined my life. But I'm still working, still swimming and still giving of myself until I drop.
Thanks for taking an intrest in a disease you don't even suffer from. It's nurse's like you who are (called) into your field. My wife is a nurse like you. Very caring and nurturing. God Bless you!
I am a young patient and victim of AS. I was diagnosed at 15 and at 16 I'm currently in remission. This disease is so painful and kills your soul. People don't take notice and it hurts. I was on crutches for two months straight last year. I couldn't function. Can't wait for a cure, it'd make my life so much easier.
On time medication, being active, healthy diet with low starch, do yoga , stretching and strengthening is the key, make core muscle strong, loose weight and daily walk or swim, you'll become the horse of long run.
This made me cry! 😢 I have same diagnosis .. it's so hard and painful 😔💔 what makes it harder is that it becomes worse day after day! There's no going back! I am a 33 old young lady in a 85 year old body!
AS is like living in pain most of the time & it is frustrating to think about resting ur body cause u definitely know that would double what ur going through
I have had symptoms of AS starting at 19, Im am now 40. But didnt get diagnosed until i was 35. multiple Specialist mri's, x-rays, pain clinics, physio, and a myriad of other thing since i was 19, never got me a diagnoses until i finally was sent to a Rheumatologist at age 35. Ive been through almost all the different biologic's with minimal success. Ive had to come to terms with fact that i can never get better, only worse. This video is an accurate description of life with AS.
I feel I have AS or something equally awful, but like you I’ve been through the medical system and I will never go back. Ten years of apathetic and sometimes cruel, unkind treatment is enough. What would be the point of a diagnosis anyway? Might as well pickup drugs and Alcohol and try to do some physical therapy on my own and screw the doctors.
It's hard when you come to realize the most important things you own are the canes, crutches, and wheelchair. I'm 17 and walking into the high school with a cane is very embarrassing. I constantly get questions or comments about if it's a style choice. People don't realize how much it impacts our lives.
sulphasalazine on a daily basis seems to lower the pain for me. Also, retoz helps with the pain on immidiate basis. Experiment with sleeping positions. Personally, i feel much better lying on stomach. And DO NOT EXERCISE while there is inflammation. Wait for it to completely go away. Hope you get well. No matter how many precautions you take, you WILL have pain episodes. Ive found that its much easier now that ive accepted these pain episodes as a part of my life. Do not think too much about the disease. We will all pass away someday and this pain is not permanent. Might as well have some fun in between the pain episodes. Also, very important to Maintain proper posture while sitting.Thats all the things i personally do. Wish you all the very best ❤️ 🕊️🕊️
I also have AS.. for the longest time I was in so much pain and felt like... if this is my life... if I have to suffer like this forever.. well I don’t want it.. I wanted to end it.. but I found a way to make the pain go away. It’s not easy at first. Your joints at first will feel like they are on fire and you will want to quit before you even start. But believe me when I say I have never felt better now.. in fact I’m running again, smiling again and sneezing.. a non issue. Exercise.. stretch.. cut down on sugar, fatty food.. I know it seems like it’s not related but think about it.. what we do when we are in pain and depressed.. we eat bad, we stay inactive, we eat fatty and sugary foods.. all this causes more joint inflation, muscle atrophy.. keep active my friends.. I know it’s not a cure.. but it’s made a world of difference for me.. and it’s a cheap and easy way to help yourself in so may ways!
Thanks Novartis for raising awareness on AS !! I got diagnosed few weeks back,as per my experience AS affects your body physically as well as psychologically.
I was diagnosed earlier this year with AS. My rheumatologist said she wishes I was her patient 10 years ago because I could have gotten a head start on treatment. Obviously there’s no cure but managing life everyday has changed my outlook.
I got diagnosed with AS about 3 years ago. I was 19. I remember trying to explain to doctors what the pain I was feeling in my right hip and lower back felt like. The best description I could come up with was "imagine being stabbed by a red hot knife and then having that pain shoot down your leg". Soon after I was diagnosed I started feeling the same pain in my left hip. I got an MRI thinking "maybe it won't be so bad". Turns out I have the most severe case my rrheumatologist has ever seen in someone my age. I've had to accept at the age of 22 that in the future I will most likley need 1 or both hips replaced with artifficial ones. It hasn't been an easy 3 years and knowing that it will most likely only get worse is....hard. To everyone else who has AS, as much as it may feel like it you're not alone. Having this condition is a constant battle but it is one that we must fight to the very end. There are days when you just want to give up but in those moments remember that you are strong. Let's kick some AS butt.
That's exactly my life since I was diagnosed at 19 years old and I'm 30 by now. Keep it up everyone sure there will be hope for us even if it's coming at the end of our journey, just don't give up.
I'm crying while I'm watching this because my husband is suffering from this.He is 28 years old now.I don't know what I can do for him to decrease his pain.
This last year I was diagnosed with juvenile AS (18 now) and this video is the first thing that’s ever captured every second of what it feels like. While the medication has helped and brought me back to about 80% mobility I’m still tired of it. Tired of never knowing if that day I’ll have a flare, have to cancel my plans in place of trying desperately to stretch and loosen anything I can. No one understand unless they’ve been through it. They can’t see it so the pain becomes less real to them. I can’t wait for a day when I don’t have to worry so much about whether I’ll be able to move
This touched my heart. I also struggle with AS, and in a way it is refreshing to know I am not the only one, but at the same time I feel for this man and wish the pain of AS on nobody. Keep on fighting, to all of the people who combat this horrible disease.
I was diagnosed with ankylosing spondylitis in 1978 today I am 64 years old the first time I had ankylosing spondylitis it feel like a safe fell on my back it was so terribly painful expecially in the lower back I will tell you what I did for myself before you do anything check with your doctor find out a good plan for you the worst thing you can do is remain stagnant best bet is gentle stretching walking swimming so there are activities you can do what's the most important don't give up on yourself you can do it but make sure you see your doctor and he or she will suggest a good plan and proper medication I'm sorry I talk so much I wish you well have a good evening
Thank you ❤️ i feel bad that watching this brought happy tears to my eyes, knowing that i am not alone ❤️ Im better managed these days, but i dont forget those days at All. They still loom over me, coming back to haunt me now and again
I ve been diagnosed with ankylosing spondylitis at 18 years old male and it came like a shock for me . The gene HLA-B27 was positive Since i was a child, i was a spontanious person and i ve been practising a lot of sports. I was enjoying life and i loved my body. When i turned 15 years old, pains appeared in different spots of my body including: back, ankles, and especially knees, I thought its a normal thing wich occurs to normal people, but the pains didnt stop. There were getting worse and worse. Every morning i couldnt get out of my bed, i felt like my joints were fusing togheter. Im trying to have a healthy life based on fruits and vegetables and exercising. I cant stop this autoimune disease but im trying my best
Fighting with this deadly disease from the past 19 years I am 29 years old and i have replaced my right hip joint . I try each and everything but theres just no cure 😭😭😭😢😢😢😭😭😭 I was the fittest person till grade 7..... Best sprinter of the college. AS ruined my childhood and now killing my maturity. Still fighting with this deadly disease..... Lets see hiw far can i go 😭😭😭😭😢
I've been struggling with this for years. In the middle of a really bad flare up. Its really getting me down right now. I've met the most amazing guy person that helps me through it. My diet and exercise routine has now changed dramatically. The pain is so bad sometimes that I can barely breathe at times. If anyone knows of some good support groups, website, remedies etc, then send them on. Take care x
I am 21 years old and for the past 4 years i am suffering from AS they just 1 year ago dignosis what my problem is and all family members is always telling me that i am lazy and always resting don't do any exceecise to make my condition better and always tell me that you sleep too much i always say that i don't feel any comfortness and i can't get any comfortable sleep and they always say you are just exaggerating but honestly in these 4 years there isn't a day were i was able to sleep comfortably and the pain it just like became a daily thing😩
Sometimes I want to cry a lot because I am AS patient. I don't know why this happened to me. How cruel God is to me. I cannot express my pain in words. This disease does not allow me to breathe properly and if I sneeze I die. But I am living in the hope that one day everything will be fine.
Some things though make it a little more bearable, but yeah the amount of videos on youtube of AS suffers saying they switched to diet X or biologic Y, and are cured are giving their advice to soon. Their symptoms will inevitably reappear. I've been there done that also, thinking i've found the magic bullet. The long long progressing of AS never seems to cease and never fails to reappear.
Diagnosed at the age of 16 now im 21 my dream is to join NDA for pursuing my country at the time but I can't do anything I lost many thing during 4,5 years it hurt when I see any civil uniform service man such as police,army now living in pain sometime I takes painkiller or sometimes not I joined gym n I do daily workouts with painkillers when I have pain A.S is worst but keep pushing yourself.. #jaishriramradheradhe 🙏
The real struggle is when you sneeze.
Oh yeah. I get an excruciating pain all the way down my chest, and down into my lower back. Sometimes the pain is so bad, it stops the sneeze midway.
Damn trueee bro😑😑
Or cough, it feels like you might die
Or having Bronchitis….
Feeling the cought building up, trying to hold it back and knowing it will hurt as hell when it comes.
So relatable
I have it, worst part is everyone calling you lazy because it’s an invisible disease.
i hear that. a lot of people around me thought i was just lazy.
trying to explain to people (before my diagnosis) that it was like walking on broken feet. my heels, toes and tendons in the back of my foot felt like walk on nails.
waking up in the middle of the night, having my wife help me to the bathroom to pee.
i was treated much differently from my family and my wife's family after a doctor told me what was wrong with me.
Totally relate with you. I got it in my teens and everyone way remotely understanding the everyday struggles. There is stigma around AS that needs to break. I think it directly effects ones nerves and induces stress but compund that with emotional stress of people not understanding AS sufferes daily struggles.
I am grain free since 1 month and got to feel difference in 8 days,will continue with this diet
After 20 days I started eating grains and on 4 day flare up happened stopped it and continued with no grain
Also the flare up is happening from.having sweet fruits to have it in moderation
Had to hold my breath to keep from crying. This is me everyday. It is hard to explain to others what I feel mentally and physically.
I'm suffering from AS
Me too. Every day. Do not go gentle.
I feel ur pain I'm in same boat there is no describing the pain
Same people saying and blaming that your so weak and lazy. I don't know hot to explain them.
Is their any surgery that can fix spondylitis?
This... And the hardest part is when the people who love you have moments of understanding, but then soon forget and get mad at you.
So true Brother.. I just got diagnosed and still struggling on how to manage this Pain which is Painful & Depressing..
However what U said about our loved ones doing that to us are the Unbearable truth.. Would feel stronger and more motivated to Survive if they understood what we are going trough..
I am patient of AS since 10 years but diagnose 2 years back, My age is 28 now, so i will suggest every patient of AS to be active, take medicines and go to gym everyday, do stretching and do not sit or sleep for a longer time, it will help you a lot and it will increase your mobility by 80% . Do not think you are alone Allah almighty is with you and He did not made any disease which is not cure able, be positive never loose hope ✌🏻
How can these immortal stories with Allah help you or me?
Can you bend or not? My posture is hunched right now.
I took a desk job because I had been managing events for a decade and feared the future. That comes with it's own problems, but I have faith that my exercises and meds will stop things getting worse.
If Allah made this disease, I am kinder than him, as I would not wish this level of pain on him, even though he wishes it on me.
Got it👍🏾 blame Allah❤
i want to scream not like a human but like an animal....23 years of pains...
This is so beautiful. I almost started crying at work. It's a depressing video, but damn it is so true. Shout out to all my other AS people out there. Keep on living!
+08bourquem How??? :(
momthree789
depressing because there is no cure
today I'm crying in office due to heavy pain in waist
I dont know there’s still no cure.
Just recently diagnosed this year. I'm a very athletic person and its turned my whole life upside down. Always thought it was a pulled muscle
How are u now
Same
Same brother 🥲..stay strong
Think I have the same thing too. My thoughts are with you!
34 just found out this year as well my an avid hunter and fisher it's really slowed me down
My boyfriend/love of my life has AS... He's 23 and has had both of his hips replaced, and now it's his shoulders that are starting to deteriorate. His spine is already fusing too. It is truly heartbreaking watching him go through all of this. Every moment of every day he's in pain, sometimes less and sometimes he tells me its unbearable. The worst part for me is that I cant do anything to help him, nobody can. I do my best by picking things up off the ground for him, doing all the heavy lifting, clipping his toenails for him, and other things. Sometimes we just stay in bed all day. If I had just one wish, it would be to take his disease away. I'm sending well wishes to anyone out there with AS reading this, I hope you all find something that lessens your pain.
Thnx sister
Your soul is beautiful
You help more than you’ll even know. Keep it up.
GOD BLESS YOU BOTH 🙏❤️🙏
Your a great woman.
I also am a AS patient and I'm 21 years old. sometimes i can't even bend over and put my shoes on. I would never wish this daily pain to anybody :(... yeah this does make you depressed.. you don't feel young anymore :(
I have this - alternating pain in either side of my buttocks, pain so bad it stops me from breathing - I've been limping on and off for 5 years now. The hardest thing is how unknown it is. At work I simply say I have a football injury because the truth is much to sad and too long to say. I don't even bother saying the truth to anyone these days. You know when you get a really bad cold and you just want to go to bed because when your sick you feel alone and no one can help... Well when you have this every day, every day you feel alone. Nothing really has a point anymore. Pain when I wake and pain when I sleep. What a wonderful thing we have called life. I hope others who see this video can help them with their goal, lots of silent sufferers like me in the world.Good luck to all of you
I have been where you describe. An AS patient myself I was unable to walk most of the time. For a 30 something BARBER this is not good. 3 kids and a great wife.
Anyway wanted to say there is hope. I was lucky enough to have a great doctor at the VA and he found the AS had caused bilateral a vascular necrosis the deterioration.
Two hip replacements, learning to walk again and nearly three years later. Med free and feeling great. There's always hope.
Did you see my rely mate?
It took me a while to notice that It's been 7 years since you commented this, how are you now??
My husband has AS. It's heartbreaking to see him in so much pain. Especially as there is no cure. It's hard knowing he will have a life time of taking medication, all of which comes with a list of side effects longer than your arm. For everyone out there who has AS I'm sending you a big hug because it's so tough and there is very little support or understanding of the condition out there.
Same
It made me emotional to read these comments. I've been living with AS pain a long time but I'm only now seeing that I'm not alone. It's hard to live when it hurts to breathe. But people think you look fine.
@Wonderful world Amen
Same here
Thank you for that. My husband has AS as well and he fights every day! He is the strongest person I know❤
🙁SPONDYLITIS
S- strong
P- people
O- overcoming
N- never-ending
D- disease.
Y- Your
L- life
I-is
T-therefore
I-inspirational...
S- stand tall!
Nothing's is unbeatable🙂
I'm in pain every day and at first I'm telling my parents and family they listen and now it's like part of me haunting me and i can't tell everyone everyday same shit again and again so i stop complaining but end of most the i cry in dark room at night sleeping there wishing that next day will come without pain or with painless death. I have big dreams but my dreams will be never true. I imagine my past life without AS enjoying with friends playing football, cricket do all the things that i couldn't do express my feelings to school crush and see in people's eyes respect instead of pitiness for me.
Just recently diagnosed ..And I don't wish this on my worst enemy! Keep your head up everyone !
how u recovered???
there's no cure dude
Early diagnosis and stretching is the best way to fight with AS. Don't take rest when AS is active. Continue with your daily activities and be active don't give up 💪 we are the Worrier's.
Warriors*
I was diagnosed with AS in my early 20s. I still remember to this day, my friend that came with me to the hospital said, "oh, at least it's not cancer". Little did she know. Or that anyone who doesn't have AS know. It's sometimes like being sent to prison. I try hard to rise above but damn man, it's hard. This video shows precisely why
You are right.,this pain is not less than having cancer at 3/4th stage.it may not kill you but destroys your mental stage for sure, I've been through this
I'm an AS patient since twenty years, watching this video now because I can't sleep because of pain .it is eating me alive
It's a little bit more comforting knowing there are others out there in the same amount of pain as I am in daily...
yes man you are right...😟
i have AS as well and i am so depressed from the pain . I am 43 and i feel as though i am 93.
Diagnosed at 16. I'm 32 now. I feel grateful that I'm able to walk most of the time without painkillers.. I do light running and workout to keep myself fit.. life is not easy but we need to keep pushing forward..
Hey brother please tell wher e u hav diagnosed and how does it help you..
@@himanshurai1674brother I recently diagnosed AS but i don't have sever symptom..I can run ,walk comfortable with little pain ...I live AS like without AS but I have always little pain in my joineds but not sever....for diagnose u should test your blood like hlb27,ra factor,CCP,crp
Hey man,I am also from India from where you have been diagnosed.because since last 10 years I am at high dosage of painkiller daily 2 times.but it often didn't work sometimes . So please help me to get out of this.
"I've had the same tomorrow for eight years, now."
That sums it up.
I have AS, My job can be very physical / labour intensive so people think I am a hard worker but in reality the only time im not in pain is when im constantly moving.
I started to cry. I'm not diagnosed with anything, but I'm 19 and the pain started when I turned 17. This is accurate to what it's like.
my dad had this from his late teens, some of his joints were fused had no movement in his neck and his spine was badly bent. was still the most optomistic man, always whistling and smiling even though his pain was constant. it's a terrible condition.
I've been dealing with the same condition for over 25 years. I've had 2 spinal surgeries as a result of this condition. I've had over a 12 spinal epidural injections because of this condition. I've lost several friends and several opportunities in life because of this situation. I don't understand how something can take away so many things and leave you with nothing. I've learned the you have to have a strong will and drive in order to get through even a single day much less a week or a month or even a year. I wish they told me in the doctors office that your mental fortitude is going to be your only strength because your body will be in a state of shambles most of the time. For all that have this disease remember we are not alone and we must find a way to work together even if it's just watching these videos to know we're not alone....😢
At what age were you diagnosed Nathan?
Moon Stars
I was diagnosed at 25 and I'm now 46.
don't worry you will be ok soon...❤️❤️
I was just diagnosed and im 25...used to be an MMA fighter. After reading this its like whats the hope it literally gets worse over time with no cure. I see no hope anymore
@@Dre1Way Don't give up, man. I trained MMA too, weights, cardio etc. I live for tai chi and whatever calisthenics I can manage these days. It's a tough mental battle, but I hope you can find your balance 🙂
One of the nightmares is when you’re planning to bed, you know you will never be able to get off form it. Every breath and small movements are killing you. Thank you for making this animation. It is so real I have to say. I hope there will have some affordable “Elixir” can free our life.
I was diagnosed when I was 17. It’s been two years now, and even with treatment, I’m just...tired. I’m tired of pain and I’m tired of limitation.
I miss the old me...
This video describes my whole life, I have been suffering from AS since 15 years and still fighting the hard thing about it nobody could imaging the level of pain that we living with even with medication with no hope for a cure. My support to everyone whos diagnosed recently with this disease don't give up keep fighting!
Brother i have diagnosed with ankylosing spondylitis and have inflammation in left sacroiliac joints
Yes only. AS affected people can feel how much pain we have get through
@@khalidshaikh4727 I am also suffering from right SI joint pain. I couldn't even getup and walk today.
please get a medicine to cure it we are dying for it
Those people having as are more determined and hard-working capacity than others
When tears came in my eyes while watching this video I didn't notice. Very true description of AS
With my pain, I don't go to work for weeks at a time. I sleep during the morning due to anxiety all night of hoping to take care of things in the morning. I mess my days and nights up. I feel shameful and anxious to find out what I can do about my problem.
keep on stretching n strengthening your core . working out is the best thing an AS patient can do
please get a simple medicine to cure it we are dying for it .
Just turned 17 and this is what's been thrown at me😅 this video breaks my heart, I also think it's sad that hardly anyone knows about this disease. I know that before I was diagnosed with it I had no idea what it was! At least I'm not alone with it I suppose!
I was diagnosed with it when I was thirteen. Other kids in school used to tease me saying I had butt ache 😂. There was a time when I got bedridden for two weeks straight. Not being able to move my body because every little movement would hurt like as if I was being electrocuted.
I had to stop dancing and playing football because of it.
Anyhow, it’s been 9 years now. I’ve been doing physiotherapy exercises and hoping that the pain won’t come visiting again anytime soon.
Btw I do some light sports at times just to make sure I stay active and healthy.
You’re definitely not alone. :)
We’re all in this together.
I just wonder how I’ll deal with this as I grow old.
this is what we are facing, but the thing that motivate me to live with this AS is that many people have their disease, some are more danger than AS.
but what i m worry about, i m 29 and not marry yet, how can my future wife will accept and understand my situation
This is such a true fact... BUT so depressing to hear out loud cause it's like being trapped in an existence of relentless pain and no one understands
IT IS LONELY and it can mentally deplete you from any happiness if you think about how your trapped in this vessel of aching pain with no way out.
this video described my life...I am in pain for four years and counting😢
I was diagnosed with AS last year. And I know how painful it is. But regular walk and exercise have made life easier. I'll continue working out and also I am planning to start yoga. I am very positive, I know I will defeat it.
Did you start the yoga? I do what I can, tai chi too and I feel like I'm doing myself harm, but my consultant reassured me that I'm doing the right thing persisting.
I have AS. I've been fighting it every day for 53 years and at times faced the deepest despair. It has defined my life. But I'm still working, still swimming and still giving of myself until I drop.
Hello, I’m a Nurse, I honestly have never heard of this medical condition but I plan to research it. God bless you & thanks for sharing.
Thanks for taking an intrest in a disease you don't even suffer from. It's nurse's like you who are (called) into your field. My wife is a nurse like you. Very caring and nurturing. God Bless you!
I am a young patient and victim of AS. I was diagnosed at 15 and at 16 I'm currently in remission. This disease is so painful and kills your soul. People don't take notice and it hurts. I was on crutches for two months straight last year. I couldn't function. Can't wait for a cure, it'd make my life so much easier.
Hiw are u now?
On time medication, being active, healthy diet with low starch, do yoga , stretching and strengthening is the key, make core muscle strong, loose weight and daily walk or swim, you'll become the horse of long run.
Interested on how you are doing now, I was diagnosed at 16 had it for 3 years
What medication are you taking? 🙏🏼
Hello Can You Reply me now after 5 years
This made me cry! 😢 I have same diagnosis .. it's so hard and painful 😔💔 what makes it harder is that it becomes worse day after day! There's no going back! I am a 33 old young lady in a 85 year old body!
Don’t give up on yourself.
Got it and no one understands what I go through every day. Thanks for the video.
AS is like living in pain most of the time & it is frustrating to think about resting ur body cause u definitely know that would double what ur going through
I have AS as well, this video gets the man tears going every time.
I am also diagnosed with AS and I am committed to living my life with peace, joy, and harmony.
How are u now? N how is the pain
Are there not good doctors related to this problem where you live?
I have had symptoms of AS starting at 19, Im am now 40. But didnt get diagnosed until i was 35. multiple Specialist mri's, x-rays, pain clinics, physio, and a myriad of other thing since i was 19, never got me a diagnoses until i finally was sent to a Rheumatologist at age 35. Ive been through almost all the different biologic's with minimal success. Ive had to come to terms with fact that i can never get better, only worse. This video is an accurate description of life with AS.
I feel I have AS or something equally awful, but like you I’ve been through the medical system and I will never go back. Ten years of apathetic and sometimes cruel, unkind treatment is enough. What would be the point of a diagnosis anyway? Might as well pickup drugs and Alcohol and try to do some physical therapy on my own and screw the doctors.
I have AS, on biologics & morphine and TBH - I agree with you @@MyDuckSaysFucc
Makes me want to cry but I can’t bcz I just might lose myself some more..
My dad has this I always see pain in him I can’t help him! This video was helpful it gave me hope . 🤒🥰
It's hard when you come to realize the most important things you own are the canes, crutches, and wheelchair. I'm 17 and walking into the high school with a cane is very embarrassing. I constantly get questions or comments about if it's a style choice. People don't realize how much it impacts our lives.
sulphasalazine on a daily basis seems to lower the pain for me. Also, retoz helps with the pain on immidiate basis. Experiment with sleeping positions. Personally, i feel much better lying on stomach. And DO NOT EXERCISE while there is inflammation. Wait for it to completely go away. Hope you get well. No matter how many precautions you take, you WILL have pain episodes. Ive found that its much easier now that ive accepted these pain episodes as a part of my life. Do not think too much about the disease. We will all pass away someday and this pain is not permanent. Might as well have some fun in between the pain episodes. Also, very important to Maintain proper posture while sitting.Thats all the things i personally do. Wish you all the very best ❤️ 🕊️🕊️
I also have AS.. for the longest time I was in so much pain and felt like... if this is my life... if I have to suffer like this forever.. well I don’t want it.. I wanted to end it.. but I found a way to make the pain go away. It’s not easy at first. Your joints at first will feel like they are on fire and you will want to quit before you even start. But believe me when I say I have never felt better now.. in fact I’m running again, smiling again and sneezing.. a non issue. Exercise.. stretch.. cut down on sugar, fatty food.. I know it seems like it’s not related but think about it.. what we do when we are in pain and depressed.. we eat bad, we stay inactive, we eat fatty and sugary foods.. all this causes more joint inflation, muscle atrophy.. keep active my friends.. I know it’s not a cure.. but it’s made a world of difference for me.. and it’s a cheap and easy way to help yourself in so may ways!
This is giving me hope!
Thanks for this video, it helped me explaining my friends and family a little bit of what it is to live with AS.
I feel this video. Great illustrations. I hope you have more painfree days
This is what a major flare feels like! What a great video to show loved ones what we deal with.
this touch my heart and make me cry
Thanks Novartis for raising awareness on AS !! I got diagnosed few weeks back,as per my experience AS affects your body physically as well as psychologically.
Been there. I am in legit tears right now. Thank you! And to all my fellow spoonies, you're not alone. Be positive.
What did you do to get back to life ?
Yes
I hope i can live without NSAID's
I was diagnosed earlier this year with AS. My rheumatologist said she wishes I was her patient 10 years ago because I could have gotten a head start on treatment. Obviously there’s no cure but managing life everyday has changed my outlook.
Sending virtual hugs to all of my AS Warrior 💕 stay strong and stay positive 🌼🦋
I got diagnosed with AS about 3 years ago. I was 19. I remember trying to explain to doctors what the pain I was feeling in my right hip and lower back felt like. The best description I could come up with was "imagine being stabbed by a red hot knife and then having that pain shoot down your leg". Soon after I was diagnosed I started feeling the same pain in my left hip. I got an MRI thinking "maybe it won't be so bad". Turns out I have the most severe case my rrheumatologist has ever seen in someone my age.
I've had to accept at the age of 22 that in the future I will most likley need 1 or both hips replaced with artifficial ones. It hasn't been an easy 3 years and knowing that it will most likely only get worse is....hard.
To everyone else who has AS, as much as it may feel like it you're not alone. Having this condition is a constant battle but it is one that we must fight to the very end. There are days when you just want to give up but in those moments remember that you are strong.
Let's kick some AS butt.
Our condition is similar. Had hit my hip and back both. Now I am 32. One hip is fuse. What’s your age now?
As an AS patient. This is spot on.
That's exactly my life since I was diagnosed at 19 years old and I'm 30 by now. Keep it up everyone sure there will be hope for us even if it's coming at the end of our journey, just don't give up.
I'm crying while I'm watching this because my husband is suffering from this.He is 28 years old now.I don't know what I can do for him to decrease his pain.
That's right Peter, tell it like it really is. Spot on.
Perfect explanation 😩
This last year I was diagnosed with juvenile AS (18 now) and this video is the first thing that’s ever captured every second of what it feels like. While the medication has helped and brought me back to about 80% mobility I’m still tired of it. Tired of never knowing if that day I’ll have a flare, have to cancel my plans in place of trying desperately to stretch and loosen anything I can. No one understand unless they’ve been through it. They can’t see it so the pain becomes less real to them. I can’t wait for a day when I don’t have to worry so much about whether I’ll be able to move
Ye, no one can understand what situation we have through only and only AS affected patien can feel/ understands this🤞
This touched my heart. I also struggle with AS, and in a way it is refreshing to know I am not the only one, but at the same time I feel for this man and wish the pain of AS on nobody. Keep on fighting, to all of the people who combat this horrible disease.
I never post to videos. Made me cry as I have had AS for 50 yrs and thought I was alone. Keep moving and keep the faith!
I got diagnosed yesterday and it was heartbreaking. But the video describes exactly how i feel
Big love for sharing this, from a fellow AS warrior x
I was diagnosed with ankylosing spondylitis in 1978 today I am 64 years old the first time I had ankylosing spondylitis it feel like a safe fell on my back it was so terribly painful expecially in the lower back I will tell you what I did for myself before you do anything check with your doctor find out a good plan for you the worst thing you can do is remain stagnant best bet is gentle stretching walking swimming so there are activities you can do what's the most important don't give up on yourself you can do it but make sure you see your doctor and he or she will suggest a good plan and proper medication I'm sorry I talk so much I wish you well have a good evening
I am a one of the person who suffered with ankylosing spondylitis
prayeds and salutations too you ..God Bless
Thank you ❤️ i feel bad that watching this brought happy tears to my eyes, knowing that i am not alone ❤️ Im better managed these days, but i dont forget those days at All. They still loom over me, coming back to haunt me now and again
AS warrior here. Keep on fighting, keep on moving!
I ve been diagnosed with ankylosing spondylitis at 18 years old male and
it came like a shock for me . The gene HLA-B27 was positive
Since i was a child, i was a spontanious person and i ve been practising
a lot of sports. I was enjoying life and i loved my body. When i turned
15 years old, pains appeared in different spots of my body including:
back, ankles, and especially knees, I thought its a normal thing wich
occurs to normal people, but the pains didnt stop. There were getting
worse and worse. Every morning i couldnt get out of my bed, i felt like
my joints were fusing togheter. Im trying to have a healthy life based
on fruits and vegetables and exercising. I cant stop this autoimune
disease but im trying my best
What is your condition now please tell me , I am also as patient and diagnosed recently. I am just 18 years old
Peter is a hero!
love you so much dear u just poured our daily storeis in most possible best way...
My sister has this i cry for her every day .. i dont know wt to do
Happens to me as well, but I crawl
I’m dying from the pain. This was a really good animation. I have spondylosis, but I need to get some scans to see if it is ankylosing spondylitis
Wow this exactly explains how I feel ! 😢
Good work, Novartis.
The worst part is when your friends don't understand what you are going through
😓💯
Exactly 😢
Factssss
Fighting with this deadly disease from the past 19 years
I am 29 years old and i have replaced my right hip joint .
I try each and everything but theres just no cure 😭😭😭😢😢😢😭😭😭
I was the fittest person till grade 7..... Best sprinter of the college.
AS ruined my childhood and now killing my maturity.
Still fighting with this deadly disease..... Lets see hiw far can i go 😭😭😭😭😢
Where are you from?
Best explained in just 90secs, Sjmply Superb 👌👌👌👌👌👌
I've been struggling with this for years. In the middle of a really bad flare up. Its really getting me down right now. I've met the most amazing guy person that helps me through it. My diet and exercise routine has now changed dramatically. The pain is so bad sometimes that I can barely breathe at times. If anyone knows of some good support groups, website, remedies etc, then send them on. Take care x
I am 21 years old and for the past 4 years i am suffering from AS they just 1 year ago dignosis what my problem is and all family members is always telling me that i am lazy and always resting don't do any exceecise to make my condition better and always tell me that you sleep too much i always say that i don't feel any comfortness and i can't get any comfortable sleep and they always say you are just exaggerating but honestly in these 4 years there isn't a day were i was able to sleep comfortably and the pain it just like became a daily thing😩
Wonderful video.
I have been suffering from AD for few years now. I wouldn't even wish this to happen to my worst enemy
Sometimes I want to cry a lot because I am AS patient. I don't know why this happened to me. How cruel God is to me. I cannot express my pain in words. This disease does not allow me to breathe properly and if I sneeze I die. But I am living in the hope that one day everything will be fine.
Some things though make it a little more bearable, but yeah the amount of videos on youtube of AS suffers saying they switched to diet X or biologic Y, and are cured are giving their advice to soon. Their symptoms will inevitably reappear. I've been there done that also, thinking i've found the magic bullet. The long long progressing of AS never seems to cease and never fails to reappear.
Everyday is a struggle especially first few steps when you wake up.
Was diagnose with this today.
I feel it daily ❤️😭
Diagnosed at the age of 16 now im 21 my dream is to join NDA for pursuing my country at the time but I can't do anything I lost many thing during 4,5 years it hurt when I see any civil uniform service man such as police,army now living in pain sometime I takes painkiller or sometimes not I joined gym n I do daily workouts with painkillers when I have pain A.S is worst but keep pushing yourself..
#jaishriramradheradhe 🙏
What you have to say about Khanzadi??
Such a sad video!! But I get what he's talking about but I have good day's and bad ones.