This condition is so hard to explain to people, esp when you 'look' fine but feel horrible 😞
@eddiebenzz
5 жыл бұрын
Absolutely ! This is a 20 fold demon disease . I’ve been living w/ it for 40 yrs. I’ve been to hell and back. I never stopped fighting it though. I pretend like I DON’T have it ☝️ If you dwell on it , you will die. So ... to hell with it ! Live your life best you can and don’t dwell on this f’kn demon. Don’t feed it .
@IGS92
4 жыл бұрын
Absolutely right
@getbennt
4 жыл бұрын
@@eddiebenzz Sometimes it (AS)makes a person a demon, I mean if you wrote a paragraph to describe a demon, beast, freak, then you would describe some of those who are invisible.
@learnwithammad8074
4 жыл бұрын
so true
@rheajanegermino9135
3 жыл бұрын
Got this 7 years ago... Feeling this way every day we’re so strong ...🦾
@submariner8970
4 жыл бұрын
I was diagnosed with AS more than 25 years ago while I was in my early 30s. The news came as a great shock as if I had been handed a death sentence and even more so after doing some research and seeing the extreme cases of the horrible deformities which came with the disease. As the years went by, I have come to terms with my condition and have learned how to manage and live with it. If you have stumbled on this video and is reading this comment, then I would venture to guess that you are one who has just been told you have AS and would like to learn more about this disease. The first thing you need to realize is AS is NOT a death sentence. The disease manifests itself in different degrees in different people though I must admit some do get it worse than others. Therefore, always try to imagine that you don't count among the latter group so that you will not be discouraged to do the necessary to manage your condition. Second is NOT to solely rely on medications. While they are still important in managing the pain and inflammation, these DO NOT make the disease go away. And as with most medications, they do have long term side effects such as kidney damage and peptic ulcerations. For me, NSAIDs have worked pretty well though I would still advise you to consult your doctor for the best course of management. Basically, NSAIDs address the inflammation while more powerful drugs such as biologics suppress the immune system to stop it from inflaming the spinal joints. But as you might have already realized, messing with our immune system may not really be such a good idea. Third is to realize that AS, though incurable at this time, CAN be managed. Listen to your doctor when he tells you that you will need to exercise regularly, and I mean REGULARLY, to maintain your flexibility and to avoid your spinal joints from fusing together. Google the word "syndesmophytes" and learn more about it. This is the greatest enemy of all AS sufferers. Having a sedentary lifestyle and relying on medications alone are the worse things you can do to yourself. It is never too late to start exercising, whatever stage your disease is in. So make up your mind today to fight back and hit the gym asap. There are loads of videos on youtube to help you get going. Just remember, this is a lifelong thing that you will need to do for the rest of your life in order to achieve the quality of life you deserve. Hold your head up (pun) and deal with it. Finally, a glimmer of hope is that AS does go into remission for some (maybe even many or most.) Even so, please do not wait to do something about it to lessen the damage this disease can cause. Hope my post has helped at least someone. Please do reply to share your experience.
@jecenth
3 жыл бұрын
Thanks
@DhaRuPerera
3 жыл бұрын
Thank you
@laciehunt9535
2 жыл бұрын
Beautifully written, thank you so much.
@rainygamedays5873
2 жыл бұрын
I'm 26, with a 7 year old I raise alone until I met my gf. I found out last year when I nearly broke my back at work and went to the hospital in an ambulance a few nights later. It's been a year now, and I'm having trouble managing all of the medications, feeling ok with my life and self, I feel like I don't know how to a human anymore. I had to do everything alone until last year, and now I need to learnt o be this ungodly vulnerable and I'm scared. If anyone has any, ANY, helpful tips for me please. Figuring out meds, figuring out your mentality of accepting it, relying so heavily on people, what to you do for money? I can't work on or off the meds and I'm trying to figure out some form of finance.
@Natsayala
2 жыл бұрын
Im waiting confirmation of AS and this has helped so much…thank you
@MrsLaLa666
5 жыл бұрын
I’m happy to know that I’m not alone, but it also breaks my heart knowing I’m not alone. No one deserves to face the daily pain and struggle that we have to go through. Some days are better than others, but bad days make you wish you were dead. I’m sorry to all that have to struggle with me, but I hope we all stay strong, and have more good days than bad.
@IGS92
4 жыл бұрын
Me to ☹️
@learnwithammad8074
4 жыл бұрын
so true
@swine13
3 жыл бұрын
Mmm actually I can think of one or two people that could do with a month or two of debilitating pain... Jokes aside, though, im an AS-man of over a decade. Just because my body is like a sack of chicken thighs propped up with toothpicks and can't support anyone to save itself, doesn't mean I can't still show some form of solidarity and support. 😁
@rondarawson6236
3 жыл бұрын
Peace be with you fellow warrior❤
@YaGotdamBoi
2 жыл бұрын
Couldn’t have worded it better myself, it’s bittersweet for sure.
@j.wobbly
4 жыл бұрын
Anytime I feel alone, or like no one close to me in my life understands what I'm going through, I watch this video. It helps me feel like theres people I can relate to, and I'm not alone. Stay strong friends.
@Nightwind-nn9wn
3 ай бұрын
GOD BLESS YOU!!!!
@j.wobbly
3 ай бұрын
@@Nightwind-nn9wn i never check my youtube notifications, literally never. for some reason i did today, i have no clue why. but im very thankful i did. i needed to come back to this, and see this comment and this video at this moment. so thank you.
@aboabdulkerimmurat2898
5 жыл бұрын
I'm taking Homera I am very tired I am in a war zone in Syria and we have no doctor or medicine I wish a beautiful life and good health for all
@amberlol7
3 жыл бұрын
I hope you’re okay 🤲🏽
@theoptimist9605
3 жыл бұрын
Best wishes from California!
@7000eva
3 жыл бұрын
Syria will recover one day, until then be gentle with yourself. Stay strong and kind!
@krimsonjoy3003
6 ай бұрын
My heart broke reading this 💔 I pray you are alive and well today 🙏
@Veteran95B
2 жыл бұрын
I was diagnosed at age 41. I just turned 50 a few weeks ago. I'm so sad seeing how many of us that suffer. It has affected my eyes, I have an enlarged aorta, a fused spine (bamboo spine) as my rheumatologist calls it. I will be keeping all of you and your families in my thoughts and prayers. Thank you for sharing this with us.
@safia3622
2 жыл бұрын
How are you doing now?
@Veteran95B
Жыл бұрын
@@safia3622 I am in a lot of pain still, just trying to live day by day. I am all alone so it's hard sometimes to cook and clean. But I try my best.
@dct7379
5 жыл бұрын
13:03 "I felt like I was losing control of my own body" - This is what I feel like lately.. very well made video. Much love to my fellow AS sufferers!
@ruthhayes4438
5 жыл бұрын
Hey Drew I'm not to bad I am still waiting on an appointment with the pain specialist. The pain has subsided a bit in the last couple of weeks, unfortunately I am not on Twitter. I do have a Gmail account 😊
@stephaniegiguere4685
5 жыл бұрын
That's exactly it. Thank you for watching. It was hard opening up. But I had too
@rebel8114
4 жыл бұрын
Having a bad time right now with this curse. I understand Drew. Much love to our fellow AS sufferers.
@FelixArdLykke
3 жыл бұрын
Did you get any help and what helped you the most? ? Where do you live? They say this effect mens i cold countrys like sweden danmark norway finland.
@undertow9993
11 ай бұрын
There may be someone who needs to read this. The spectrum of progression for AS is very wide; many people live completely normal lives with the disease if they focus on their health (eat well, stay a healthy weight, don't smoke, stretch, lift weights and exercise generally). I was diagnosed 3 years ago, am 36, and am absolutely fine. I have a flare up once or twice a year which, whilst painful, is manageable. I dont need any medication. This is the case for many people for the whole of their lives. So many of these videos and articles focus on people with severe versions of the disease and it can be very daunting and unhelpful for people to see this, particularly if newly diagnosed. Its really quite possible that you have a mild form of the disease which you can successfully control and managed. Why is it we only see the worst of AS online?
@jonathancadoo1
Жыл бұрын
I’ve got a lot going on in my head after this video. A lot of conflicting emotions. I’d like to believe I could turn my fortunes around, but I’ve got my hopes up before several times and ended back at square one. I wish everyone with this horrid condition the very best
@mandy10ca
2 жыл бұрын
I’m a 43 year old woman and I never heard of AS until two weeks ago when I was diagnosed. I was relieved. I have been suffering for almost 30 years with so many different kinds of pains in my back, feet, stomach, knees, hips, neck, fatigue and so on. I finally have some answers. I have extreme pain every day, it has caused anxiety, depression and insomnia. I also find it really effects my temperament. It’s hard to explain it to people who do not suffer with AS. They mean well but they just don’t understand.
@Vixinaful
7 ай бұрын
I suspect I may have this and also have depression and anxiety. How do you cope?
@Vixinaful
7 ай бұрын
Im 47, btw.
@rondarawson6236
3 жыл бұрын
Changing my diet, hydrating helps alot...rest when you need to...shots don't work...I'm one who cannot use medication it just doesn't work.....exercise helps as lot....weather can effect me as I have arthritis as well ,so I have to understand were I am in a day....I used to be a bodybuilder and ran 3 miles a day....so I know what I'm talking about....soft hugs to all the warriors who are fighting everyday....I loved this as it was alot of Irish family here.....My ancestry is alot of Irish....Dublin.....God bless you all..
@mariaalma8419
3 жыл бұрын
It's debilitating, so painful, and what's worse, is when so called "professionals" like Dr's, judges,and such, ignore and doubt your suffering. This adds so much more pain.
@ItsJustMe-nq1dg
7 ай бұрын
I agree. 😔😔😔
@krimsonjoy3003
6 ай бұрын
Agreed 😢
@gemmagroves3825
4 ай бұрын
💯 it's absolutely horrendous hoping of diagnosis in 6 weeks. Suffered all symptoms for 13 years and found out hla b27 8 years ago.
@krimsonjoy3003
3 жыл бұрын
I resonate with every individual in this documentary. There are no words to describe how this really feels, pain is just the tip of the iceberg. As soon as they said "it's a grieving process for time lost", yeah I felt that.
@stephan5673
5 жыл бұрын
I had lots of pain started at 19 Got diagnosed at 39. Can't work anymore now, Try to keep positive and keep Moving.
@latifalifa9463
5 жыл бұрын
Salam What your diagnostic in hlab27 ???
@mjoswong1947
3 жыл бұрын
I thought my diagnosis after 11 yrs of pain was unimaginable but ur story .... my God hope ur r well now
@aldovisanda1732
Жыл бұрын
How about now)
@ItsJustMe-nq1dg
7 ай бұрын
@@mjoswong1947It took me 20 yrs to get diagnosed. Always was fibromyalgia and nothing else. Finally in 2022 I was diagnosed. In pain everyday. 😔
@Recoverycoach78
3 жыл бұрын
Pain everyday but it’s the lack of sleep that’s killer. I haven’t sleep for more than two hours strait from pain in 4 years. My hips are the worst. Blessings to all those with this terrible disease.
@DeeHenry23
Жыл бұрын
I HIGHLY recommend RBD Research Lab, LLC in Spokane, Washington, and their products!! Phenomenal sleep and pain relief ☮️🫠☯️
@krimsonjoy3003
6 ай бұрын
I'm right there with you, every night, all night! My hips (pelvic bones) and lower spine are the worse. I find sleeping upright to be the best position, it keeps the weight off the hips. A good recliner is my best friend! I hope you have found some kind of relief 🙏
@stevemack2004
5 жыл бұрын
Tears. It pisses me off so much. No one cares how much it hurts.
@jjfromthebigland781
5 жыл бұрын
I've come to learn that it's not that people don't care about how much pain we're in (I'm 46 and diagnosed at 18) it's that they just can't comprehend how much it hurts.
@stevemack2004
5 жыл бұрын
@@jjfromthebigland781 I think you are right, and maybe they don't how debilitating it is.
@prashanth-AS-healthcoach
22 күн бұрын
Beautiful movie which tries to show the struggle as well as how we can cope with it. I have been through pain, paralysis, multiple spinal surgeries, uveitis attacks etc but I built my life bit by bit and having a good exercise regime like egoscue along with a happy mindset helped a lot. Today I am a marathon runner, egoscue postural alignment specialist and a youtuber. More power to all the warriors here ❤
@realbeauty938
6 жыл бұрын
This video was refreshing as it’s from a real patient ‘s point of view ( not just a doctor telling about it). I have been up most of the night with AS pain and watched this video as could not sleep. I saw my rheumy nurse last week and tried to make her understand the new pain I now have in my hand after an infected bug bite ,had a strong course of antibiotics as it would not heal. She just commented “oh,look at my thump,everyone gets a bit of osteoarthritis with age so it’s not a big deal”. That was very ignorant of her and felt a bit offended. Since the infection in my hand I have lost the ability to to do a lot with it within three weeks when I never had a problem with it so it hardly is osteoarthritis. Lots of stern got to all of you who are coping with a chronic illness an d chronic pain.
@dct7379
5 жыл бұрын
Sorry to hear about that reaction... I have had similar experiences with many of the doctors I have seen. How are you doing now? Have you explored the idea of potential Lyme's Disease with the bug bite?
@krimsonjoy3003
3 жыл бұрын
One thing that stands out to me the most when people are suffering with this "mysterious" pain is how the healthcare industry IGNORES their cries, or just brushes them off onto somebody else with NO answers. After 20 years of agony and dealing with doctors/specialists who just wouldn't listen, I feel like this is a deeper rooted issue than the disease itself. I got my diagnosis last summer after literally figuring out what my problem was from a movie! I did my own research, then payed out of pocket to see a doctor who was willing to do the appropriate tests, and sure enough, AS. It should NOT be this hard to find answers! I could (and actually considering it) write a book about how much living with this has destroyed/built my life. My advice is to keep speaking out, change drs if you have to, gather your own information and DEMAND answers! Because I tell ya, once you have that diagnosis shit changes real quick for the better. It's a lifetime battle, but knowing the enemy is a powerful thing!
@KernowFishy
Жыл бұрын
This is a very helpful video thing. I've recently been diagnosed, 30 years after my first symptoms and it's a real blessing to finally have answers. It's been a real battle to keep going, never getting answers from the docs, and it impacted my physical and mental health greatly (and my career , having to self manage it with part time work). Resources like this are a real help for communicating this illness.
@mandeep1413
5 жыл бұрын
Heart-rending to hear that lady describe her story - 'it's a cruel disease'. Almost had tears in my eyes. Lovely video and a great concept to get people suffering from AS involved as opposed to doctor's explanations. I really hope one day soon we will find cure for autoimmune diseases.
@bevfergar7769
3 жыл бұрын
Thank you so much for making this video. After being dismissed and ignored since my 20's I have been properly diagnosed at 63! Now awaiting two hip replacements and commencing anti-TNF medications once the funding is approved. Spent years being passed off as 'depressed', 'menopausal' etc etc. until the MRI scans, XRays and blood tests proved categorically that I have AS. Thank You xxxxx
@Polecat-qz5om
2 жыл бұрын
Wow!
@Alisha_M92
5 жыл бұрын
13:30- She's described it perfectly. That's EXACTLY the way I feel during major flares. I started having mild hip stiffness from the age of 23, and was officially diagnosed last month, at the age of 26. Even though the pain comes and goes and it's not a constant thing- I never know what to expect tomorrow. It's like living a life of complete uncertainty and fear! Thank you for making this wonderful video. It's comforting to know that I'm not alone.
@namanbohra7840
3 жыл бұрын
Would suggest you to try ayurvedic..btw how are you lately ?
@stylemethrift997
Жыл бұрын
I was diagnosed after 4 years of horrendous pain. I recently started on biogenic medication and it has made the world of difference, pretty much pain free and I feel so lucky (but also strange because the pain was my normal). Gentle movement everyday has also really helped, having a nap when I need to and eating well. Good luck everyone ❤
@love42productions17
5 жыл бұрын
Great examination of AS and great cinematography! I'm a documentary filmmaker with AS and I appreciate what you and your team did with this short.
@baileysice2715
Жыл бұрын
Are you in the uk?
@bats4748
6 жыл бұрын
Excellent video and information on AS. I have been suffering with this crippling condition for more than 15 years. I am on Etanecept injections. At first the medication worked, but now I don't know if it is making any difference. My last flare up was a few months ago. I could not stand up straight and was sofa ridden for a week. I Then decided to go to the gym to do light cycling. I felt absolutely fine to the extent that I ran on the treadmill for 114 minutes. The most difficult thing about this condition for me is to explain to people that one day I feel like absolutely fit and one day I feel like I am a 85 years old. Many thanks for putting a lot of effort in compiling this awesome video. May god reward you highly for your hard work and I hope you father gets better.
@dct7379
5 жыл бұрын
I understand exactly how you feel! I am an electrician and every day I work it feels like it will be my last. Can totally relate to feeling like an 85yr old.. how is your medication going now? Did the doctor's switch it up to something else?
@Alisha_M92
5 жыл бұрын
I can totally understand. It was the same with me during my last and the most severe flare. I was bedbound for 3 weeks; couldn't roll over, couldn't turn left/right, couldn't take the stairs. Had to take 5/6 NSAIDS daily. Completely immobile. And you're absolutely right, having a disease like this does make one feel like they're 90! Hope you're feeling better now.
@latifalifa9463
5 жыл бұрын
Salam alikom and me i sufre in spondylarthrite ankylansante not yet diagnostic.
@rondarawson6236
3 жыл бұрын
Hydration helps as does balancing electrolytes....have had this since I was a little girl...dropped me at 14 years old...diagnosed at 28...now in my 50s.....as you know doing too much when you feel better can cause a flare in the next three days....I dont know why....but it does for me I cannot tolerate any medication so I do meditation and relaxation techniques....God bless....soft hugs😇
@troyrodgers9790
3 жыл бұрын
@@rondarawson6236 i don’t understand what causes the sudden weight loss! does anyone else’s experience pain throughout their entire body. my back and neck didn’t even start bothering me until 5 months into the onset. had joint pain then muscle then internal then head searing burning sensations across my brain then the neck pain followed by complete loss of arm function at times along with debilitating pain. my spine now burns. sharp pains in my neck. never really never had neck issues i can remember before this sudden onset. i know ive had lots of falls throughout my life being active and an athlete most of my life. been rear ended at least 5 times in my life.
@daviddunn6781
3 жыл бұрын
33 Years old. Fused badly already. Wish it was diagnosed much sooner. Still not on Biologics. HOPE EVERYONE MANAGES TO STAY STRONG!!!
@krizzygirl206
5 жыл бұрын
Very glad to see in this short documentary various women who were diagnosed with AS. A lot of what I've seen and read was always about men's stories with AS, but knowing that I'm not entirely alone in having this disease is a bit of a comfort. I was diagnosed in November 2018, but suffering from this over the last 10 years until it became unbearable and they referred me to a specialist. I've had to leave my dream job, take time off of college and step back from a normal life because of AS. Was crying before the video even hit the 10 minute mark because of how much I can relate to these people. I hope they and everyone watching this video and out there suffering find some relief someday. It's an awful thing, AS, but we're gonna make it.
@nadeemabbasi1561
4 ай бұрын
Stay strong.. I’m suffering since 14 years lots of misdiagnosed but it’s god’s plan
@lorigonzalez4518
3 жыл бұрын
I appreciate how this video actually explains the mental and emotional aspect it’s not just pain mentally and emotionally you feel this huge depression take over you and you don’t know where it’s coming from because it’s not external Lee apparent you’ve always been a tough person a happy go lucky person and suddenly everything in life just feels too overwhelming and exhausting I feel like I failed as a mother I got my diagnosis after being single single mom of four kids for eight years having to raise them has been horrible I have no energy for anything I amNot my usual happy fun adventurous spirited mom it’s depressing because you really lose the death it’s the death of who you were I was unable to run anymore I was unable to even yoga is hard having friends is just way too much it requires too much energy from me
@craigpoole7554
3 жыл бұрын
Great Video, I’ve had AS for 25 years now, it’s a up and down disease, good days, bad days. The thing I find that helps is staying in a positive mind set, not focusing on it, the one thing which would be great is that everyone around knows the symptoms and what you go through, but sadly they don’t. Stay strong mentally and we can get through this 👍
@FelixArdLykke
3 жыл бұрын
agree on mindset, if the pain is related to night maybe it has something to to with the melatonin or food that cause inflammation.
@charleyhullah
6 жыл бұрын
A great video. It was really refreshing to hear from people who are suffering with the same issues as me.
@kelseyraemiller4991
4 жыл бұрын
Thank you for publishing this documentary. I cried the first time I watched this because I can relate so much. I have AS.
@amberlol7
3 жыл бұрын
How long since you were diagnosed? I just got diagnosed yesterday 😦
@joe2night
3 жыл бұрын
How is it going now? Do you feel better or worse?
@kelseyraemiller4991
3 жыл бұрын
I got diagnosed 4 years ago, when I was 23. I went 4 years undiagnosed searching for answers. It was a long journey, but I am finally on route to healing both mentally and physically. Still on pain medicine tho.. Sooner than later I will have the finance to seek medical treatment at a THC clinic instead of falling victim to BIG Pharma!! How are you? I will be praying for you both to find healing!
@kelseyraemiller4991
3 жыл бұрын
@@amberlol7 I got diagnosed 4 years ago, when I was 23. I went 4 years undiagnosed searching for answers. It was a long journey, but I am finally on route to healing both mentally and physically. Still on pain medicine tho.. Sooner than later I will have the finance to seek medical treatment at a THC clinic instead of falling victim to BIG Pharma!! How are you? I will be praying for you both to find healing!
@jakejohansen1889
5 жыл бұрын
I've had A.S. for the past 27 years (I'm 39 yrs now) 30-60 minutes of swimming & water therapy 4-6 times per week for the past 18 years has kept me from becoming crippled. I eat a high fiber diet - tons of veggies & no processed foods - to keep the gastro tract in order, which is key to keeping the A.S. imflammation at a minimum. I never eat fast food,never add salt or sugar to foods, never have caffeine. I also will not take any nsaids or A.S. biological drugs as they tear your body up & don't work well. To deal with the pain I consume copiously quantities of the highest grade medical cannabis.
@jimgood4610
5 жыл бұрын
I was on many different pain meds and Enbrel, Humira and many other drugs . The pain meds masked the pain some , the others don't seem to do anything. 7 years ago , I was taking Fentanyl. I was already on Oxy and Tramadol. The combination helped some but after a few years I could tell that all of those narcotics were killing me and I had to get off of them . That proved to be easier said than done. I moved to Maine where medicinal Marijuana is legal. I really didnt think it would work. After a few weeks of using the Cannabis I was able to stop taking the Oxy and the terrible Fentanyl with no withdrawals. Needless to say I amazed and extremely happy. I still take tramadol but I also take CBD oil and smoke high CBD cannabis. I still have some pain but it is better than it has ever been .
@KingConan
5 жыл бұрын
Thanks, I'm looking for encouragement about doing this nsaid and biologic free. Been eating somewhat keto for a few months now but I think I'm having my first genuine flare and it's really affecting me emotionally.
@rhitrill1819
3 жыл бұрын
I’m switching to a plant based diet to see how this helps manage the pain, I’ve also been advised to cut out starchy food - apparently that helps to minimise inflammation...was wondering if you’ve tried cutting starch out also?
@troyrodgers9790
3 жыл бұрын
@@rhitrill1819 well that sucks for me because i was already on a mostly plant based diet (some fish) dor almost 10yrs when my bad symptoms suddenly started last year. had lower back stiffness on and off for over 20 yrs and would have occasional muscle tightness but always thought it was bcuz of my job as a graphic designer spending long hrs sitting at a desk. i was still active outside of work playing basketball, swimming and cycling when i could. Ive had a a few blows to my spine in the last 27-28 yrs so maybe that set this all in motion. working for a moving company, falls off my cycle and falls playing b-ball and a few car accidents where i got whip lash from being rear ended. all these contributed to the development but never had any serious issues until this exploded. was ill about 10yrs ago and had widespread muscle pain and some stiffness in my spine that didn’t last long. just dealt with fatigue and burning eyes for a long time then i went plant based and everything just about cleared up. even the back and hip tightness was far and few in between. im guessing that was my first flare up and after a year or so got everything under control. this time is on a whole other level 10x worse with joint pain, swelling, weakness and loss of muscle function at times for days. weird thing is symptoms always worsen late in the evening or at night when it’s time to sleep
@michaelkraft218
Жыл бұрын
Right on. Swimming 🏊 everyday almost is the most effective therapy.
@Achayok
5 жыл бұрын
I’m so grateful that I can still walk & drive with AS. So many good friends who help me watch my youngest child, clean my house once a month and help me with shopping. My family has been a great support when I need rest. I love that my doctor lives in my neighborhood and I can text her when things are hard.
@lulu6920
5 жыл бұрын
The boy can skate with such a disease!he's so strong, every patient should be positive like him.
@danplugaru8187
3 жыл бұрын
Is not SA many of them....many make confusion between aspondylite ankylozante and other forms od spondylartrities...not their fault....
@midnightskate
3 жыл бұрын
I am also a skateboarder suffering from AS. Skateboarding is the one thing that allows me to keep stretching and moving. I feel best when I'm on my board, but worst when I have to stop and go to bed. If you're suffering from the stiffness, I'd high recommend finding something that allows you to move like this and do it daily. These brief moments of relief are the only things keeping me mildly sane through the pain.
@Chels-fz5uq
9 ай бұрын
Please don’t make condescending statements like this to people who suffer from diseases like this. Positivity doesn’t relieve pain and suffering….it hides it and telling people who are truly suffering to be positive pushes them into the dark alone.
@danplugaru8187
4 ай бұрын
All People în movie have not AS..... you dont know what you are saying...only advertise.......
@LindaStrand
5 жыл бұрын
This explains all of my symptoms!!!! Some days I do not want to even get out of bed.
@troyrodgers9790
3 жыл бұрын
some days i can’t get out of bed 😞
@FelixArdLykke
3 жыл бұрын
Try vegan diet for couple om months and see if it gets better. The inflammatory could come from the food as well and dont trust medicans since their job is to profit from medicins the give you.
@QUANGIFTed
7 ай бұрын
I Thank You Father Yahuah For This Documentary it’s A Huge Blessing This Film Has Summarized My Entire life In 27 Minutes.There Aren’t Much Words To Say About This Illness To People Who Cannot Relate But Everyone Who Suffers silently from this Only Yahuah our Father in heaven Understands Your Pain truly May You Find Him in the midst of your pain and May the Father Be With You All Who Suffer From This Chronic Illness And May You All Lean On His Strength To Get You Through The Hard Days HalleluYah
@donjuan3528
11 ай бұрын
I'm about to go through a divorce because i am perceived of stop trying. I drank to deal with the pain. I just couldn't keep up with my condition. Its real and I wish everyone in this video for the best. I'm here with you.
@natureexploration
2 жыл бұрын
Thank you for creating this documentary! It is very good, and it is showing the many faces of AS, and different human stories. I was diagnosed with AS only 2 years ago at the age of 54. I have probably had it for most of my life. I have led an active lifestyle (still do), but I am no longer a mountain climber. To keep my mind and body in check I practice karate, and I am an outdoor photographer. This disease is a cruel one, and we have to look it straight in the face and be active. Even on the most painful days, and on days with fatigue, we have to do some exercises. On our good days we can be top performers in many areas of our lives. Stay strong, and keep on moving forward. Don’t give up! On my KZitem channel you can see some of the things I do despite of the AS.
@wanliqiang
5 жыл бұрын
For every AS patient, every day is the best day of the rest of the life, AS will follow us for a lifetime, we must learn how to coexist with the disease. Happiness is the best medicine.
@smitayadav1645
5 жыл бұрын
万里强 👍
@SevasTra420
Жыл бұрын
I recently got diagnosed w A.S .. havin a rough night knowing tomorrow I have to go quit my new job I want to keep so bad cause I need to focus on becoming an A.S warrior along side all my distant unknown fellow A.S fighters. I found a somber comfort in watching this
@ruthhayes4438
5 жыл бұрын
I was diagnosed three years ago and I'm in chronic pain lately. I'm on humira twice monthly but nothing is taking the pain away now. My right leg and my left shoulder are the worst, sleeping is a rarity. I have a fourteen month old son and find it difficult to even pick him up some days. I've taken to using ritches it's like deep heat but used for cattle, that and horse rub. It's relentless and some days are a struggle, the ironic thing is I work for an orthopedic company. Back to hospital next week please wish me luck 😊. Best of luck to you all x
@tr1084
5 жыл бұрын
Have you tried other treatments? I started with enbrel at the age of 19 and went from wheelchair to walking and eventually lifting weights and working and living like a normal human being, now age 27. I hope you're doing well!
@ruthhayes4438
5 жыл бұрын
@@tr1084 thank you so much for your message. I'm going to the specialist on Tues and hopefully yes my treatment will be changed because humira doesn't work. I'm also been tested for lupus as my sister and cousin have it. As long as they get to the bottom of this and I can some pain free time, that's good enough for me. Glad your doing well Tyler x
@ruthhayes4438
5 жыл бұрын
@@tr1084 thanks so much for your response 😘
@dct7379
5 жыл бұрын
Totally hear ya.. they put me on Humira once a week and it seemed to not help any more than 2x a month. What do you try to do to relieve your pain? Anything work like a hot salt bath or the like?
@ruthhayes4438
5 жыл бұрын
@@dct7379 oh yeah heat is my friend, hot baths hot water bottle. I use allot of muscle rubs, tiger balm. I'm only forty in February but I feel like an old lady most days. Gotta suck it up and carry on I've got full time job and a fourteen month old. How are you doing?
@boyangdeng6520
5 жыл бұрын
同一个世界,同一种强直😂😂 I am 21 and I got AS more than 3 years,hope the life of everyone who is suffering from AS could be better and better
@ujjwalruhela4890
5 жыл бұрын
It's really hard to suffer from all this age 20 got AS for a year now.. Can't take any classes Already fail so many exams Depression ... suicidal thoughts... Always have a feeling that I don't have any future no friends no family ....severe neck pain and stiffness...lower back ,knee ,ankle,toes,shoulders everything hurts...also stomach problems....
@auraincreationcompany7466
5 жыл бұрын
ujjwal ruhela u can fight this, love yourself....
@paulawhite2546
5 жыл бұрын
There is always hope. My 56 year old husband was diagnosed three years ago. Symptoms had been missed by two rheumatologist and numerous orthopedic surgeons. We have a hot wax machine. Dip hands ten times, wrap in plastic wrap, and cover with mitts. A teeter inversion table works wonders. He sleeps with a cooling knee pillow to keep spine straight. He has an inverted pillow to prop under knees if watching tv. Swimming helps a lot. I am always on the lookout for any small thing that will bring relief to him. He suffers greatly. Can't turn his head virtually at all. Just keep researching and keep hope.
@themarshall31001
5 жыл бұрын
It is a daily grind but have faith in your self. No one can understand what you are going through.I have had AS since 1969 and am 67 years old. Try to find anything to help you cope from day to day . Music , swimming , singing or what ever helps makes you get through a day. Try not to became hopeless find strength in getting out of bed . Email me if you need someone that understands what you are going through
@vikash23
5 жыл бұрын
Bhai agar no starch diet and nds search kar usse bahut fayda hoga atleast try 10 din m result milne lagega
@hrishikilines9764
4 жыл бұрын
Yesterday i test HLA B 27 test, reports are not ready but my symptoms r exactly like AS so i worried because im etrx engineer and searching for job.
@AnkylosingSpondylitisMan
6 ай бұрын
Knowing that there are many of us on here & on Facebook that talk to each other & lean on each other for support is a huge positive. The support can be vital in helping with the mental health difficulties AS brings.
@gatewayz75
2 жыл бұрын
Pilates once per week in a small group of 4 at a physio clinic really helped, too busy with work and fatigued to go more often but it was amazing. I was diagnosed in 2000. The worst things for me are difficulty getting in and out of a car and most worryingly the iritis eye attacks, one lasted for about 2 weeks and my eyesight isn’t 100% in that eye ever since. I still travel and recently stepped back from a busy senior management role after 17 years and have a simpler job with less stress, it took me years of saving to be able to do that on a single income. I can no longer go shopping for ages, I get tired very quickly in a shopping centre, I can only tolerate going for a walk for 30 minutes and dread shopping for shoes with the drama of putting on shoes especially ones with laces. I have never let AS stop me from having a good time though with friends and travelling, I just can’t go sightseeing and exploring on foot for hours, it’s all taxis between points of interest if I can get in the car 🙂
@Iamgoddessofthemoon
4 жыл бұрын
Much love to all AS sufferers. I know your pain all too well and suffer with you
@tattsallover7437
5 жыл бұрын
I hate having this shit! But we have to stay strong for our loved ones .
@michelleadams9365
5 жыл бұрын
You are so right. But it's hard sometimes.
@stevemack2004
5 жыл бұрын
I sometimes wish Id die, because it hurts so much.
@michelleadams9365
5 жыл бұрын
Me too.
@rashid3553
2 жыл бұрын
Same😭
@Gantzz321
5 жыл бұрын
I remember that pain, the damage it does to your relationships is overwhelming at time (long periods of time). The things that you get used to are amazing. I remember numerous time collapsing to the ground in pain, and having to collect myself enough to tell people not to all for help, that I would be ok, I just need a couple minutes. It cost me more than one job dealing with this pain. I gave up trying to have any personal relationships, they are enough to work without having this added on top of it. For me, my first symptoms hit me when I was 15. By the time I was 25 I walked with a limp. By 40 my back was completely fused from tailbone to shoulder blades. While this sounds horrible, the majority of the pain was gone. If not gone have become so conditioned to pain that what I feel now is a 2-3 at most. putting on my socks each day is my biggest pain in the ass. I have had to make a device to assist me with that action. But after that, I slip my boots or shoes on and continue my day like anyone else. Picking things up off the ground takes a moment to think about how do I get back up after I get down. Because my knees have had to take on much more strain then they should and at the age of 50 they can hurt if I need to get up and down off the ground to many times a day. Other then that I manage ok with most any task I want to do. Today I tilled the garden, all this winter I shovelled snow. I work as a tech and have to get under desks a lot. Whereas co-workers might just kneel I tend to have to lay on the floor because I cannot bend over enough to see well enough. Life is challenging, but that is also part of what makes it worth living, what challenges am I going to meet today and how I am going to get over past it.
@YamCherie
4 жыл бұрын
For getting things off of the floor, or from under your bed, or from up in a high cupboard, you need a "grabber stick". Get a well made one, so it will last. It has a pincher action that will grab ahold of things for you. I've even been able to pick up a heavy can of soup with it. You can also use the grabber stick to reach into your clothes dryer, to get your laundry out. It's also good for picking up trash that has blown into your yard, or for reaching around in your car when you want to collect all of your things. Grabber sticks are found in the "mobility aids" at your pharmacy or medical supply store, or on Amazon. Once you have one of these things, you'll never want to be without it, especially on those days when you're extra stiff and hurting.
@andymcparland7805
5 жыл бұрын
This is such a good film, it's pretty much my journey I was diagnosed at 53 and it totally destroys you, the fatigue is immense.
@michaelkraft218
Жыл бұрын
Thoughts and prayers for all people suffering from AS like myself. It seems like I must go swim everyday of the week or face the consequences of the pain.
@krystaljohnson7654
3 жыл бұрын
I appreciate each one of them for sharing their story, and God bless you all. I'm glad to know I'm not alone through this. I now know I'm not over exaggerating about how I feel. AS is horrible and unbearable that I find myself crying. Not to find comfort in your own body, 99% of the time, is painful. 🙏🙏
@daringcow
4 жыл бұрын
Thank for taking time and effort to make it. Its shown people with the condition in such a compassionate way. I cant do the gym and terminated my membership because for last two years i literally was physically able to use it about 6 week in total. Seeing a lady who is hitting the gym gave me much needed hope. I used to be a runner a gym goes a hiker a cyclist. AS took it all away but now that Im diagnosed and getting help I hope to get some of the old me back in some capacity.
@johnjones4096
2 жыл бұрын
Im here because I just got diagnosed with A.S. last week. I've been in pain since my early 20's, I've had some disc issues, L5S1 herniation at 30 years old, got that fixed with surgery, now I'm 40 and it's back, along with 2 more disc in my thoracic, bone spurs in my neck, I can't move head side to side very well, I have a migraine everyday, I hurt in my hips, my shoulders, my knees, my elbows, even my fingers and toes. Some days I can't stand all the way up, my knees stay slightly bent, back bent slightly forward. I have zero energy, I feel like I'm dying. I was a drywall finisher. I did alot of ceilings. By the end of the day my head neck and shoulders would hurt so bad I'd be crying on the way home. February last year I fell on ice at work, which intensified everything. I went to the hospital where they x-ray me tell me It's just a sprain, sent me back to work in 2 days, the pain got so bad by april I had to quit my job, which means workers comp pays nothing. I haven't made a dime since last April. Im searching for reasons to keep going and coming up with very little. Sad parents and siblings. My wife has really fell off in the last few months. Better or worse right?! Mad about me turning down work I can't physically do. I feel trapped in a hopeless situation. 😔 there's no way out
@Justpeacegia
2 жыл бұрын
Please know you will have good days . Sending prayers ..
@barbiegirlthrifter6841
Жыл бұрын
I hope you are still hanging in there. 😊
@learnwithammad8074
4 жыл бұрын
Thank you for creating AS awareness... as a mother of two toddlers and hit by the worst flareup so far... I cannot explain how much challenged I feel ...I cannot make anyone understnd the pain i m going through they only retort by saying oh its normal after childbirth. I am unable to carry out daily activities with very active toddlers. If only i was diagonised early .. i would never have martied and made other life so dependent on me. I hate when my kids wana play with me and I cannot do that
@omarday9691
3 жыл бұрын
If my rheumatologist said I could be cured if I had my legs amputated I would have the surgery immediately. Had it for 20 year's and now have my first born diagnosed with this terrible infliction. Defeated and devastated
@sandeepdhillon7841
3 жыл бұрын
He is young ,in young age body's healing power is very good, biologicals are the last door for this treatment and they are also not good for overall health. Tell him to use NSAIDs like ibuprofen and that too with antacids because chronic consumption of NSAIDs can cause gastritis or gastric reflux ds.
@sandeepdhillon7841
3 жыл бұрын
Take multivitamins specially vitamin E,C,D,B6 and Omega 3 fatty acids capsules, these will lower the inflammation in your body in longer run and these vitamins will act like anti oxidants and prevent the damage by autoimmunity. Take garlic 🧄 every day it will help to prevent cartilage damage Kickout the sugars and processed foods and gluten from your diet Drink green tea Most important do strecthing exercises and stabilize your mind because most of the people with HLAb27 donot develop this ds ,it only starts by some trigger and depression and bad diet act as a major trigger in most cases
@troyrodgers9790
3 жыл бұрын
@@sandeepdhillon7841 no make sure he cleans up his diet and avoid inflammatory foods. get plenty of water,vit d3+k2 and vit c along with proper rest
@MartinJarvis-hn2bj
5 ай бұрын
Thank you for this video, I was misdiagnosed for 34 yrs with this infernal disease despite being tested positive for HLA-B27 in 1990. Fused spine etc now and I’ve been in that dark place of mind where the lady on canal street talks about, I see the video is 5yr old now but I really hope that lady is ok now. ❤️
@BullCricket75
5 жыл бұрын
Thanks so much for this insightful, informational, and thought provoking video.
@christianansell3170
2 жыл бұрын
Just got the diagnosis and while I’m happy to know what it is, this video has helped me understand it a lot more as still waiting for details from specialist. As I can no longer straighten my spine around the upper chest I just hope it’s not too late
@primarya4156
4 жыл бұрын
AS consist of flare ups and remissions. early diagnosis is the key to live a comfortable life. Unfortunately many ppl are diagnosed too late after the irreversible damage is done. I'm one of the lucky ones because my AS was diagnosed only 2 months after my first finger and heel inflammation. I received decent treatment and I have never been too bad for too long.
@troyrodgers9790
3 жыл бұрын
what type(s) of treatment are u receiving?
@dalienware668
9 ай бұрын
I was diagnosed years ago in my late 20's, early 30's and didn't believe the diagnosis and forgot about it. Fast forward to 51 and have stumbled across the information that basically explains my symptoms to a T. Slow progression, un-explainable symptoms, family and friends don't believe you. I'm getting an appointment on Monday for a back Dr and X-rays to take this seriously.
@glovere2
Жыл бұрын
Pain can be managed. The fatigue is what shuts you down because there is no way to manage it. I've had AS for 30 years. The first 20 was far better than the last 10 when chronic fatigue set in. AS affects the brain after a while, which is where the fatigue comes in. Extreme fatigue you can't understand if you don't have it because it's not like anything in your experience. I would trade this fatigue for all the extreme pain I used to have because I could still have a relatively normal life back then with NSAIDs. Not anymore. The meds can help with some of the symptoms, but the fatigue remains. On the other hand, I have very little pain with my current drug regimen. Every case is different, so you cannot know how the illness will progress in your individual case. Better to try and stay hopeful and do everything you can to help yourself. Spend time being grateful for the good things in your life. Your life will change, but it's not the end of the world. It might feel like that sometimes, but there is always hope, new treatments, diets that work for some people, etc. Try everything and you will eventually find some relief. Lots of little things to keep your spirits up, especially having the support of those who love you. Try not to let yourself fall into isolation. That's a tough one when you can't leave the house but do it online if you cannot go out. Lots of little things add up. You will need to get creative. That's my advice.
@piyushmittal7317
5 жыл бұрын
Thank you for making and sharing this video. It felt like i am seeing my life through your storytelling.
@BLARG09
5 жыл бұрын
I'm finally being sent to a academic reumatologist. Even though no one wants to have this, I hope I can be diagnosed. Because it's been years if this without knowing and being treated like I'm full of it. I have no friends anymore and haven't worked since 2016.
@FelixArdLykke
3 жыл бұрын
where do you live? why they say this illness is more common in western countrys.
@BLARG09
3 жыл бұрын
@@FelixArdLykke US, I don't have this. I still have no diagnosis. Unknown autoimmune disorder. I just can't afford to find out anymore.
@Rene_Christensen
Жыл бұрын
Just diagnosed at 47 after 31 years of issues. Never had any medicin. Fused SI and some other spine issues, but seamingly it has burned out, as it sometimes does. It is a terrible disease, but it does help somewhat knowing finally what is wrong.
@getbennt
5 жыл бұрын
If you think this video scares you, then consider this, none of these AS sufferers has a severe case of it, makes you think what’s past them.
@ste999
5 жыл бұрын
Did not realise this condition was a competition on who has it worse than other. Makes you think
@asterixmush
5 жыл бұрын
That is untrue. And what does “past them” mean?
@icametoreadcomments2217
5 жыл бұрын
exactly i have seen young boys using stick while walking. seriously A.S literally kills you in many fucking ways
@jakejohansen1889
5 жыл бұрын
Mr Mr is right... I have a mild case of A.S. - started at age 12 & I'm 39 now. I've met many people with severe A.S. & I have it nowhere near as bad as them. I have a lot of physics pain but I am in no way crippled or brought down by the other severe effects of advanced & intense A.S.
@freebird-dana8829
5 жыл бұрын
I agree...there are a lot of people with AS that can't even do stretches or work out. I have an online friend who only sees his feet when walking! I'm sure there are more like him in my groups, too. Not everyone is lucky enough to have mild AS symptoms. I sure wish I could only have mild symptoms.
@leoavlo6299
2 жыл бұрын
Trusting in God is helping me deal with my AS, being 2 yrs off job do to my AS ; but finding the way to deal with this with little meds and lots of shiny day! :-)
@sreyoshichatterjee3635
3 жыл бұрын
Dealing with the same situation. Everyday is a bad day. Depression, anxiety and more pain.
@amberlol7
3 жыл бұрын
Hope you’re feeling better sreyoshi. I just got diagnosed yesterday, when did you get diagnosed?
@sreyoshichatterjee3635
3 жыл бұрын
Five months ago
@rarj2031
14 күн бұрын
@@sreyoshichatterjee3635 are you fine now?
@xmomartha
Жыл бұрын
Fighting everyday 💪 Thank you for creating content to inform others!
@robertap7818
3 күн бұрын
Hello from Canada I have had AS since I was 22 years old and now I am 55 it as been hard at times 😔 but I find that for me even if I have pain I must keep moving but sometimes easier said than done - some days 💕
@mikeirwin8528
5 жыл бұрын
Imas suffer too keep your head up take one day or one minute at a and try to keep moving
@dr.sitanshusyesstheticscli6058
2 жыл бұрын
Really loved your work . Thanks for putting it out there for the world 🌻
@amandapittar9398
5 жыл бұрын
I have AS. I think I have had it since my twenties. I have IBS, been treated and operated on both feet for plantar fasciitis, have rib pain, heel pain etc..the sacral pain and joint pain is horrid. I finally had a diagnosis 3 years ago - at 50. My hands and feet are arthritic. I take TNF Enbrel every week which knocks me about for 24hrs, but has reduced my pain by 50%. But the fatigue! The tiredness that you can’t sleep from, the weariness that won’t let you close your eyes because the pain gnaws away at your body. Everything people said I could relate to. I took codeine for 15 yrs to combat the pain and function normally. Then I had to come off it. Two weeks of detox. No addiction, just physical dependency. Why? Because my GP wasn’t happy. Now I have paracetamol- which may as well be smarties. There is nothing else. Time to come up with a new pain drug I 🤔....
@AquariusStarr
2 жыл бұрын
I got diagnosed with AS in October 2013 after 10 years of prior unexplained back pain. I lived in a city where the doctors were, well, to be nice, kinda dumb lol. I got told everything under the sun as to what the pain could be: kidney stones, pulled muscles, too fat (and got told by one doctor to stop eating completely when he asked how often I eat and I said only dinner some days 🙄), and one even said it was bird flu 🤦🏻♀️. I moved to a city where (at the time) had a very good reputation in their medical community. I got a family doctor, she sent me for blood work and within 2 weeks I was diagnosed with AS. In June of 2014 my left shoulder started acting up, getting really stiff and painful, and Off for scans I went. I got asked when I dislocated my shoulder, but that was a mystery to me too as I never have as far as I’m concerned. Fast forward to now (July 2022) and I have absolutely zero range of motion in my left arm, it has affected my neck and caused occipital neuralgia, and I have both an anterior and posterior Hill Sachs lesion as well has a labrum tear and a tear in my supraspinatus muscle in my rotator cuff. This injury is NOT AS related or caused, but every single doctor or specialist I have seen just chalks it up to being AS. I seen a PT for a couple weeks (it was covered, I don’t have insurance otherwise) and she said that after looking at my scans and doing the initial consultation, there is zero evidence of this being AS related. After seeing her doctors have given me no treatments, nothing. Because of living with this shoulder pain for 8 years straight, I have the same thoughts as the lady at 13:32 all the time. 😢 I’m so sick and tired of this shoulder pain and this disease. All I keep hearing from people is “just take a walk and it’ll feel better”, or “well haven’t you taken any Tylenol? I bet if you took Tylenol the pain would go away”.
@adisucipto5386
5 жыл бұрын
Now i'm afraid....i had this problem with my upper back and lower back for some time now. Everytime i go to my physical therapist, he said it inflammation...constant inflammation. What the hell. Come on.
@chelsia11501
3 жыл бұрын
Did you figure it out?
@Deuce7Off
5 жыл бұрын
This is freaking me out I have a lot of AS symptoms and started skating about two years ago when I decided I was tired of letting pain control my life. I figured the longest I could get hurt from skating is a couple weeks to half a year, I've had chronic pain for 8 years, a shinner, bruised knee, bruised hip, those heal fast.
@moniquefacey5760
2 жыл бұрын
How are you now?
@BlackAdder1970
5 жыл бұрын
I was diagnosed with AS last year (I'm 49 now) but I have known since I was19 that something was seriously wrong but no Doctors that I went to had any clue and would brush it off like it was in my head. I have: 1) chronic fatigue/Chronic pain 2) Lower back pain 3) Hip pain 4) Neck pain 5) Shoulder pain 6) Knee pain (both knees) 7) Heel pain (right foot) 8) Arthritic hands 9) Psoriasis on my hands and elbows (They split open and bleed and painful) 9) Stomach problems and abdominal pain (I crap my pants at least once a day) 10) Watery eyes, Blurred vision at times, and sore eyes 11) Severe Sleep apnea (I have to use a CPAP) 12) Otosclerosis in both ears I have had surgery in both ears as well (Stapendectomy) It has restored most of my hearing. But not all. 13) I have tinnitus in both ears (Nerve damage) So I have constant ringing in both ears which is very loud. 14) 2 surgeries on my right knee 15) 1 surgery on my left. My left is actually worse though and I need it replaced 16) Severe seasonal allergies ( I get 4 allergy shots per week for the last 20 year's) I also take 2 Claratin a day and nasal sprays 2 times a day 17) I have Major Depressive Disorder and Generalized anxiety 18) I have traumatic stress from being sexually abused between the ages of 8-12 by my older brother. I still work 50 hours a week and walk my dog 2 miles a day I need to be on disability but my rheumatologist says I will have an uphill fight to get it 😞 But yet some people can get disability for having a damn hangnail! 😠😠 I really need help I can't do this anymore my body hurts so bad!
@penniewyatt9391
5 жыл бұрын
Russ Green hire a lawyer. Keep up with your dr check ups and see a mental therapist at LEAST 2 x a month. Do everything the dr asks of you.They won’t take you seriously unless you do, even if you a practically bankrupting yourself. Took me 2.5 years. It doesn’t solve much, but ensuring medical insurance was a load off my mind.
@michaelkraft218
Жыл бұрын
Don't let the naysayers get you down. You lawfully qualify for SSDI benefits.
@surajnalawade4666
3 жыл бұрын
I m 25 i also suffering from AS ..the hard thing is explain other what i suffer but it's ok i learn how to live with As. Some time it's hard to accept it feel like don't have future nothing do any hard work.but I knw I m strong and I am the warrior I can win with my AS. ...hope for the best
@ms.dev.90
5 жыл бұрын
Yaaaaa.. you made me cry and happy together. Thank you
@TheGuren96
Жыл бұрын
Im 10 years in from 17 to 27, the first years with different docters were the worst, yes you will need to adapt, your way of eating, excersize, no smoking, no alcohol ( or very limited) and mornings are the hardest, it's so hard to realise that yes you have pain but it won't get better by resting, you gotta move, its so counterintuitive, but it also made me more compassionate for others their pain, and on some days it might make me more of an asshole XD. I understand this is so hard for ppl to accept, i heard one say, mourning the life you lost, well i got the disease before it even began. but we won't lie down and surrender. People with chronic illnesses are the strongest souls. Im not on biologicals yet, still doing Nsaids with alot of excersize. Stress also increases flares it seems, cuz ive been so well for a long period of time but now i'm going to uni and i can feel the stress settling in my lower back. sleeping would also be better without AS but you make do with what you have, Excersize and ice cold showers are amazing.
@shaunhaulk3694
6 ай бұрын
I am doing Enbrel, exercise, and anti-inflammatory diet. I feel much better than I ever used to, but the big key is the diet in helping to reduce the inflammation.
@replique176
5 ай бұрын
What anti-inflammatory diet are you following, please?
@shaunhaulk3694
5 ай бұрын
@replique176 Don't eat: Seed or vegetable oils, wheat products, dairy (with the exception of grass fed butter or non processed real cheese) products, sugar or syrups, processed foods, etc. Do eat: All the meat you want, fatty fish like mackerel, salmon, sardines but no tuna, dark leafy green vegetables or any vegetables but be careful to watch out for glyphosate. Look up dirty Dozen and clean 15. Also, olive oil, as long as it is not heated, avocado oil or coconut oil, fruit, and berries in very small amounts and moderation. I read the labels on everything now to see the ingredients because they hide sugar in just about everything and also put soy bean oil in just about everything. Our health care system is broken, and they are unknowingly making us sicker and killing us quicker. If you really want to start turning your overall health around, I recommend listening to everything that this guy teaches right here: kzitem.info/news/bejne/ypeq2oeuhntqho4si=ZAeOiMAGUkC9bBkm
@MohanYadav
Ай бұрын
Thank you so much @@shaunhaulk3694
@nadeemabbasi1561
4 ай бұрын
The worst part is relative’s making fun of how we sit and stand up 😢
@iriamcarlostamayo
2 жыл бұрын
Este documental es increíble. Agradesco enserio saber que no estoy solo. Pensaba que todos mis problemas eran por culpa mía. Que yo era un hombre que se cansaba muy rápido que siempre estaba agotado. Gracias a esto veo que todo este tiempo a Sido por mi enfermedad y no soy el único que la pasa. Gracias. Me encantaría que este documental estuviera en español. Lo agradecería muchísimo. Así comprenderían por lo que paso todos los días de mi vida
@rainygamedays5873
2 жыл бұрын
I take humira every 2 weeks, baclofen three times a day, gabapentin three times a day, perocets twice a day, vitamin d pills once a week, duloxetine once a day. I have such a hard time managing all of these pills in my stomach and eating and doing anything. I'm in constant pain but if I don't take these my body literally cripples itself inwards. Can anyone give me any advice? I'm 26 and just found out last year's exactly. I got hurt at work and half my body started crippling inwards. I don't know what to do, I can't work right now. I have a 7 year old I've raised alone up until now. And my gf, god bless her soul, has come I to my life and has been helping but I feel like I'm not getting any better. I barely just get by it seems but if I'm off any of these it's infinitely worse. I'm scared of anything and see my rheumatologist tomorrow about my meds. Any tips to being up? Ask for? Change? Daily activities? I can't do almost anything right now
@stevemack2004
5 жыл бұрын
I've had it for 25 years. Can barely walk now. Has attacked neck, shoulders, back, hips, and knees. About to have my 5th shoulder surgery. Cant turn my neck and back all. On meds, but no opioids yet. I hope so soon. Hurts to move anywhere. 5 fused vertebrae.
@getbennt
4 жыл бұрын
Steve Mack hmmm, so you have it easy so far?
@spendrera
4 жыл бұрын
So sorry. I feel 100% with you. I use a wheelchair for going out of my home. I know we have to keep moving...but how, if you are in a constant flare and pain is 10/10 while walking...? Mobility aids improved my quality of life. I'm 38. Big hugs.
@stevemack2004
4 жыл бұрын
@@getbennt Are you joking?
@getbennt
4 жыл бұрын
@@stevemack2004 no, I’m serious, without the damage first said, like most AS sufferers are what I call ASS because the second S is for sufferers, but the ones who walk like a sheet of plywood are just AS. Those of us who have range in maybe a few joints, pain from thinking of moving and liquid, molten gas that seeps into every crevice of a body, every layer and burns till new bone appears so no room for old range. I am here for data, I am interested ONLY in the true AS, not the ASS ankylosing spondylitis suffering, but the damage from it.
@stevemack2004
4 жыл бұрын
@@getbennt I'm really not sure what you mean, but okay. From AS I have osteoporosis, osteoarthritis, bone and disk disease, replaced both shoulders and both rotator cuffs, multiple bone spurs and fused vertebrae...I didn't think this was a pissing contest, but right on, man.
@vandross1
4 жыл бұрын
Omg yes thank God I watched this it made me cry but to hear other's going through this made me feel more normal 😪😪😪
@joycemorgan6600
3 жыл бұрын
i was diagnosed in my 30's, but had problems with leg and hip pain in my teens, and often was in the nurse's office because of it when in high school. My Rheumy told me I had to worse case he has ever seen in a woman...I am HLA B-27 negative and there is a missing "T" cell in my immune systems. I am on a biologic right how..but still deal with pain..and inflammation in my joints
@wendyrees8775
Жыл бұрын
I stated with bowel trouble. Emergency illeostomy and protectomy . At 40 Really bad pain in back and hips took a long time to get help many sterieds over time. Im80. in a wheelchair some days very bad others I can manage Drs only give you paracetamol or co-cordamol. Nothing to reduce the flae-ups I live alone and struggle.
@HBR.MetalWorks
3 жыл бұрын
I got diagnosed last week, I'm 38 I've been in pain since I was 15 ! I've had a hip replacement and need the other one done all because of AS !!! So much pain throughout the years has led to two suicide attempts:-( the best medication I've found effective is cannabis, but being in the UK all they can give me is morphine, been on morphine for 13 years ! Great now I got I an opiate addiction! Life's great 👍
@glovere2
5 ай бұрын
I have a similar story. Symptoms in my 20s, worse in my 30s, but it wasn't until I got uveitis at 43 that I was diagnosed. It gets missed all the time. Who doesn't have back problems?
@starsnspoons
6 жыл бұрын
Great video, thank you!
@ryanhadfield4541
2 жыл бұрын
Waiting on mri results for ankylosing spondylitis I have hla b27 positive
@loud6754
5 ай бұрын
I have AS and it breaks my heart to see all the people like me suffering everyday 7:10 This part of the video is really really important.. because I got AS wen I was 19/20 years old.. The first time I felt the pain of AS, was in the insertion of my legs into the hip .. Since then it took me 5 months to figure out that I had to go to a rheumatologist.. After 3 months of diagnosis they said I have AS and 9 months after I was able to get the medication from the government (It took so long because you had to prove it and the HLA B27 being + was kind of mandatory) In any case, this is crucial because since then.. with the meds, I have not had any intense flares and now I'm 27 soon 28 and have been living almost pain free.. So, get diagnosed ASAP.. go to the gym and stretch often and youll be able to live an almost "normal" life
@wendycarr9150
5 жыл бұрын
Some days good and some days bad. The original diagnosis 10 years ago was a life changing decision. Still running on Eternacept, after enbrel. No time off work (even though its my company). ill make it work as long as I can still get out of bed most days. Im in Auckland New Zealand.Not much support or awareness in this country. At least I have a good GP.. Anna @ Glenfield Medical Center. Shes the best, and has been looking after me for the last 20 years.
@rondarawson6236
3 жыл бұрын
I was diagnosed with Ankylosing Spondylosis over ten years ago....flares drop me.....fatigue is exhausting...I can get grumpy in the morning because I have to force myself up with so much pain....throughout the day having to get things done ....no help...my young son has it...he has spine fusion.....he is in serious pain everyday....our family deserted us....we only have eachother....my young daughter has symptoms...but is doing ok ....just waiting for the phone call from her someday as this runs in the family....HLA/B27 gene...
@mohdkhizer433
5 жыл бұрын
I'm surprised to know that yesterday i was diagnosed with AS now I'm 20 and mbbs first prof student. Don't know if i could complete my course...
@Gantzz321
5 жыл бұрын
I wrote this an posted it, then saw your comment... I just copied and past it, not sure if it is of any help, but it tells some of my story of dealing with AS. But even if it doesn't don't stop doing things you want too. I remember that pain, the damage it does to your relationships is overwhelming at time (long periods of time). The things that you get used to are amazing. I remember numerous time collapsing to the ground in pain, and having to collect myself enough to tell people not to all for help, that I would be ok, I just need a couple minutes. It cost me more than one job dealing with this pain. I gave up trying to have any personal relationships, they are enough to work without having this added on top of it. For me, my first symptoms hit me when I was 15. By the time I was 25 I walked with a limp. By 40 my back was completely fused from tailbone to shoulder blades. While this sounds horrible, the majority of the pain was gone. If not gone have become so conditioned to pain that what I feel now is a 2-3 at most. putting on my socks each day is my biggest pain in the ass. I have had to make a device to assist me with that action. But after that, I slip my boots or shoes on and continue my day like anyone else. Picking things up off the ground takes a moment to think about how do I get back up after I get down. Because my knees have had to take on much more strain then they should and at the age of 50 they can hurt if I need to get up and down off the ground to many times a day. Other then that I manage ok with most any task I want to do. Today I tilled the garden, all this winter I shovelled snow. I work as a tech and have to get under desks a lot. Whereas co-workers might just kneel I tend to have to lay on the floor because I cannot bend over enough to see well enough. Life is challenging, but that is also part of what makes it worth living, what challenges am I going to meet today and how I am going to get over past it.
@akshat1182
5 жыл бұрын
R u from India?,,if so give ur contact
@kaziaguy9592
5 жыл бұрын
I'm feeling this way too. All I can say is don't give up
@sandeepdhillon7841
3 жыл бұрын
How are u now ?
@rondarawson6236
3 жыл бұрын
It's super painful...to the point were it drops you....took over 30 years to get diagnosed....with what seemed like a list of issues for years....finally got tested HLB-27...genetic anklosing spondylosis......thought at first it was from a near death horse accident were I broke my neck and had alot of internal damage....but then the doctors found inflammation Rheumatoid arthritis ..already diagnosed with stomach issues at 14 but had stomach issues from age 5 .....joint pain,nausea,fatigue so bad cant get out of bed...when it hits you badly it feels like a truck hit you then backed up and hit you again.....mood swings are normal if it's high pain.....usually I can deal with it...but if it's cold or the weather drops suddenly or it's right before it rains or snows...I'm a mess....I cannot take medication...I cannot digest pills so no pain relief....I have to eat the pain daily....my son who is in his 20s has had this since he was 11 started with juvenile arthritis turned into bamboo spine.....which the spine fuses....he is over 6 ft....he has had depression and what hurts the worse is nobody believed our pain was real.....even if it's something that runs in the family...its genetic...but people dont see the issue.....cant take injections.....we have heavy allergies and celiac disease....so we cannot tolerate the side effects it makes us suicidal....on top of in heavy pain.......we rest when we need to move when we can....I force myself to do alot more then I should and I know I have more neck damage from lifting .....but I dont have help....its just us......my excersise is housecleaning and dishes, laundry grocery shopping driving.....taking my dog for a walk twice a day ....somedays I have to trade off....like I can only make food and lay down...other days I cant even get into a shower because the water hurts.....it never stops. You just get used to the pain... but you will continue to flare if you do too much.....cannot do yoga it hurts too much....but I like to walk.....I used to be a bodybuilder and Chef....but I cannot tolerate it anymore......stretching hurts...my daughter does yoga and has had to have her hip pinned at 12 years old....its not a fun disease .....I wish people would understand...😢
@troyrodgers9790
3 жыл бұрын
i think the key things many have in common but don’t realize are injuries/falls that may have caused digestive issues to the point where we never absorbed nutrients properly. when the body detects weakness in the spine it tries to repair it the only way it knows how, by building support on the spinal column. if we had probably done more stretching and strengthening of core muscles the spinal fusion may not have developed...my theory anyway. im focused on my gut right now as i believe a damaged gut leads to the autoimmune issues/flares. i think if they had a device to break away the syndesmophytes that bridges the vertebrae before it gets too bad, we would be able to strengthen our core muscles and with proper nutrients and diet, stop it from developing.
@chickadee7901
4 жыл бұрын
I'm so glad I came across this. Everything about this I can relate with. I fractured my spine in a horse accident 6 years ago and have had so many doctors dismiss my back pain since telling me i should be better by now. Finally got diagnosed with AS (MRI showed the inflammation and damage). I ALWAYS get told that I look fine. It's so hard.
@fixedguitar47
4 жыл бұрын
“Welcome to the party pal” - John McClain
@bhushanghate2007
6 жыл бұрын
Thanks for making this video. I am going to share the link of this video almost on all social media groups and on my personal profiles. I am an advocate of AS Warriors. Daily I talk to at least 3-4 new AS Warriors. If any one wants any help related to AS you can find me on facebook and Twitter by the name Bhushan Ghate. I will try my best to help you guys.
@godtucigreatho4921
5 жыл бұрын
Sir aap seh help thi, plz contact no send krdo apna
@godtucigreatho4921
5 жыл бұрын
Bhushan sir
@b.k8051
5 жыл бұрын
i don't even believe in god but GOD BLESS THESE PEOPLE AND ANYONE GOING THROUGH SOMETHING TOUGH. I hope other parts of their lives are just extraordinarily better than everyone else's. Some balance. Some justice.
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