Living with ankylosing spondylitis - Amanda Geard's story
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- เผยแพร่เมื่อ 25 ก.ย. 2021
- Amanda Geard was just 19 when she began experiencing symptoms of ankylosing spondylitis. AS is a form of inflammatory arthritis, which mainly affects the spine, but can also cause pain and/or swelling in the shoulders, hips, knees, heels, chest/ribs and small joints of the hands and feet.
The writer and geologist talks about her story in living with this chronic condition, how she spent 15 years in debilitating pain before finding an effective treatment plan.
Originally from Tasmania, Amanda lives in Co. Kerry, with her husband Barry and two red setters, Harry and Bertie.
This video is produced as part of an awareness campaign about ankylosing spondylitis called Back in Action. For more information on this campaign visit www.arthritisireland.ie/backi...
It is supported by Novartis.
Further information about ankylosing spondylitis is available at www.arthritisireland.ie
#AmandaGeard #ankylosingspondylitis #arthritis
I have AS and I have a very similar route as you. I actually played division 1 baseball and didn’t get symptoms till 25. I then could barely move in paralyzing pain for a year until I was diagnosed and was finally able to use medication and get better. I am now back to baseball at 28 and just signed a professional contract.
Which medicine do you use bro?
I only have admiration for you. I have AS for many, many years l am nearly 77yrs
now.l understand exactly what you have been through, keep it up, never give up.
I have had AS for 20 years, but I didn't let it stop me and had an amazing career in the ocean. I was unfortunately hit by a car, and it made my AS so much worse. I also injured my back further afterwards, and I am barely able to walk now. I have to use a walking stick for the pains in my leg from the car impact, but also to relieve my back pains. After 20 years I have finally been diagnosed, and this video has brought so much hope back to my life. I have done over 5000 scuba dives in 15 years, and in the past 4 years I haven't dived and it has destroyed my soul. Been fighting with severe depression for a very long time now, and there is finally some light at the end of the long dark tunnel.
sending you a big hug, Nathan!
GOD bless you and heal❤️ you’re very strong💕
I’ve had AS diagnosed for over 40 years and agree one needs to keep on moving.
This really helped me Amanda Thankyou, I’m 32 I’m an Australian and I was diagnosed only a few months ago. Sometimes the pain is unbearable. And I’ve been tears many time thinking about what the rest of my life will look like. I was an extremely adventurous young man I love to snowboard hike and travel and all sorts of other physical things. Thankyou for showing me that it isn’t the end and that all those things are still possible for me..Thankyou Thankyou Thankyou
What help? She didn’t say what the treatment was
My father got AS at 19 in the army he died 3 days ago at 82,5 he had AS and COPD he closed his eyes at the hospital then he was gone he simply decided that it was his time he didn't want to experience the risk of a wheelchair and oxygen assistance he told me "if i can't walk on my own then i will stop taking my medications" R.I.P. dad you were a warrior 1941-2024
i'm 32 and i have had AS since 20/21 it's hell on earth he had a older son who died at 46 had severe AS it was a heart attack the heart exploded so yeah AS is quite scary...
I am 32 and after fighting with back pain since 3yrs today I got diagnosed with AS. I was very sad but now happy that they diagnosed it.
She is modest. This is the most diabolical pain a human consciousness can endure.
I’m 45 I was diagnosed when I was 26 and had 6 vertebrae then now I have only 2 vertebra left from total fusion. I was a very active and outdoor person and was in sports growing up football and wrestling 9 years and marching band but it’s so hard at times to stay positive but am involved in church God has been good even when we suffer I count it Joy stay strong and remember there are people that need to hear your story thank you so much
Thank you for sharing. I'm 35 and was diagnosed when I was 16. I remember limping all throughout high school. My parents didn't believe my cries from pain. In college I couldn't even put on my socks or use a sink. Yoga has become my friend, and I completely relate to what you say about pain and excercise. Thank you. Sending you much good health!
what is your condition know thanks for sharing your story please give answer
Needed for madicine
Same here inflammation in ribs then hips started at 12… limped on and off thru out my life 35 and doing great on biologics 🙌
@@0seve291 zimi te rog ce tratamente iei sa fii bune eu sânt dezastru cu SA și respirstie
@@dc.pentrumesteri4893 sorry I only speak English
You go,Strong Woman! i was diagnosed when I was 35, am now 52.Had knee operation and two frozen shoulders as well.AS made me stronger as I train doing weights,walk,run using tumeric cayenne pepper,ginger daily. Feel less tired and beating menopause as well! Keep moving,stay strong!
why don't u go for shoulder surgery and make your shoulder free?
I also suffer from AS could you please tell me the portions of the spices. Thankyou
I've been living with this condition since I was like 15 years old but the pain wasn't as strong as it was 2 years ago, I'm 34 years old now and 2 years ago I was finally diagnosed with AS since then my reumatologist prescribed me a biological treatment and I started to feel much better I'm taking shots of ADALIMUMAB every 15th days and exercise I give my best every day cuz I have a little kid. Well this my story I'm sorry if my english is bad I'm from Mexico
@@manishabhagat4350 pehle theek hoja phir dikhaye side effects
Milo, your English is actually very very good. Let your child continue to inspire you. You give me great hope as I continue to search for a diagnosis and a path forward.
I'm 24 diagnosed when 22..got sad and depressed lost 10kgs but now I'm healing ❤
"The beast had been named, and I now had something to fight". That's exactly how I felt almost 10yrs ago when I was diagnosed with AS after years of pain that I was just told was normal growing pains despite none of my similar aged peers dealing with what I was going through. Just having someone confirm this wasn't in my head gave me hope even though the prognosis was not good.
Now at 38 I am married with 2 kids and life is great. Most of my 30's I've felt better than most of my 20's. I have bad days and bad weeks for sure but the good outweigh the bad and I'm living life that way I want to most days.
I have had lots of prayer that I feel has truly helped change my life with my condition. I live a pretty active life but have always struggled to drink as much water as I should. I realized joints really need water and try to do a better job of drinking more of it which I think has also helped.
Encouraging video...though i could not catch on how exactly she was cured of AS
@@johngeorge8597there's no cure. You have to stay active to fight it and take biologics which suppress the immune system
I m 21 years old n i had AS since i was 15 years old
I’m newly diagnosed and really going through it atm..these videos are helping me to form a better understanding of how life could be..thank you
Thank you Amanda for sharing your story. I'm 41 years old and I got diagnosed with AS yesterday. I can't describe my mental state right now, perhaps searching for answers, reasons for how, why, and now what. Seeing you in this video has given me some hope. Going for my blood tests this afternoon and MRI next week. Thank you Amanda for sharing your story.
Sending you support and well wishes. You can get through this with good doctors, emotional support, the right medication and exercise like Amanda explains.
One of my identical twin daughters was diagnosed with Juvenile Anklosing Spondylitis at 14. She and her identical twin sister turned 17 a few days ago. She's still going strong. Trust God. 🙌💛
Thinking of you and appreciating what you’re going through @Zana Marigold I’ve just turned 42 and have a younger cousin who has been diagnosed with AS which has lead me to realize this is something I need to pursue for my pain that I just “suck it up” and carry on through. I have several other auto immune issues that run in this same family line and I’ve been able to attribute this pain to those for the last 20 years or so but it’s moving now and becoming more apparent that it’s likely AS. I’m so scared to get the confirmation. I feel for you deeply 💖💖💖
Understand totally it’s only 2 weeks since my diagnosis and looking at videos like this does help settle your mind but cannot believe Australia treats people like that for medications that can transform a persons life.
Your not alone, we're all supporting u. Try not to stress , practice deep breathing, have some time for urself. We're in 2022 treatments are more accessible and your Dr will go through different options and treatment plan with u. Stay strong
Fantastic, thank you for sharing Amanda, I'm 65 and live a full and active life even as one that was completely consumed by AS prior to age 40, symptoms started about age 12, diagnosed at age 26 (1984) with fully fused SI joints (today I have full fusion hip to neck including rib cage). My miracle came in 2001 with a biologic which quite literally gave me my life back. I try to help young people overcome the fear of treatments. And stress that AS in not a pretend disease but has the capability to be a brutal crippler. I smiled when you called it "the beast" - that has been my description of my lifelong partner that is AS.
I'm male, 22, and I was diagnosed about a year ago. I've started noticing symptoms when I was about 17 with flares every so often, but I figured that was just regular pains from being more active as I was getting older. Fast forward to just before I turned 20, it flared really bad around Christmas time. Once I came back to work feeling like I couldn't even stand, I constantly had to sit, and this would last for ages. It eventually got to the point where even thinking of getting out of bed would cause so much pain, and my manager gave me one shift a week in hopes that I would recover from this seemingly mysterious pain. My room mate wasn't very helpful either, but long story short I was running dangerously low on funds because I couldn't get into work, and I lent them money which was never returned to me. Later that summer I eventually moved back into my dad's house again. I don't think I have ever been so depressed in my entire life. The weight of the world's expectations on my hurting shoulders and back made me want to cry.
I am getting better now thankfully; the family doctor that my dad had before he quit got me with a Rheumatologist (and funny story, the first one he recommended me to didn't even exist), I made a plan to myself to start going to the pool, and it did me well. I stopped going to the pool for about a month and a half though, what a mistake. I was thrown off by the new price of the membership renewal, but if you're reading this now, remember this:
Your treatments may have a price, but your health is priceless. It is never a bad idea to invest in your health because it is the most important thing, and its so easy to take for granted sometimes.
With that being said though, I am curious about what kind of treatment plan you went on. I do have a membership at the pool, but I only tend to go on days that I work since I live a fair way from town and would prefer not to waste gas just to go there and come home (a little contradictory to what I just said lol), it would be nice to have something I can follow for when I'm already at home.
What kind of work do you have.. I also have AS.. I feel your pain when you mentioned you have the world on your shoulders.. I cried when I heard that.
@@Channelsettings667 I was working at Little Caesar's at the time, but thankfully I work at Gamestop at the moment. Clearly its not the most back breaking job, but it's also not a job that anyone with AS can just "choose" to do. (also the management has been practically non existent for the first year of working there, and clearly even with a lax job, I still hurt.)
Are you currently employed?
I'm a male that has AS which started when I was 14 to 15 years old. I was not diagnosed until my late 30s. I thought everyone hurt like me. So I thought it was normal to hurt the way I was hurting. Movement of all your body joints is one of the key aspects to this disease.
yet, what we fuel the body with in 2023 glyphosate, aluminum riddled Foods we need and can do so much more! Hippocrates told us! Meat and 2x fats resolved all my issues of AS and that's after 20 yrs of not being diagnosed.
Same for me I thought everybody had the aches and pains I had till one day I asked my partner do you hurt when you wake up and get out of bed? He said no and for the first time I thought to myself okay this isn’t normal 😩
I’ve been chronically ill since I was 15 also, 10 years and no diagnosis except fibromyalgia but they don’t give you and resources or treatment plan or anything for that. I feel that I have AS or something similar and I’m asking why none of these treatments were suggested? I’ve always improved with exercise but it wasn’t easy and the illness would get worse off and on so I’d have to stop and that would make it so much harder to do
My father got AS at 19 in the army he died 3 days ago at 82,5 he had AS and COPD he closed his eyes at the hospital then he was gone he simply decided that it was his time he didn't want to experience the risk of a wheelchair and oxygen assistance he told me "if i can't walk on my own then i will stop taking my medications" R.I.P. dad you were a warrior 1941-2024
i'm 32 and i have had AS since 20/21 it's hell on earth he had a older son who died at 46 had severe AS it was a heart attack the heart exploded so yeah AS is quite scary...
@@eivindgjengstjohansen9625 Yes, AS and other auto immune diseases just wear your body out. Sometimes you feel as if you want to give up. But you push forward until you unable to any longer. Just had a small surgery on my hand been off of Humria for a month and half. So I would lessen the chances of infections, also had an ablation done on my neck for a second time. After my fist ablation on my neck I was pain free no migraine headaches for the first time in many years that's until a car rear ended me in November last year. Now starting all over again.
I'm writing this comment with tears in my eyes, because after watching so many youtube videos and twitter comments about people with the disease, I started thinking maybe I should just end it all before it becomes unbearable.
I haven't been diagnosed yet. My pain started about 4 years ago and I've been taking ibuprofen ever since. I've been to 6 different doctors, two physiotherapists, and two chiropractors. Got a lot of MRIs and X-Rays. They diagnosed me all sorts of stuff that kind of explain parts of it, but not the root cause. Finally yesterday I googled: "My back pain is unbearable!" And an internet quiz from appeared. Spam, I said, but I did it anyway. I don't remember the name of the quiz (I was stoned and by the way, it makes the pain much worse).
So I remember it asking me about a bunch of stuff I didn't know, but then there were questions like: Where is the pain? Lower back, but also neck. Actually, the whole thing. Does the pain feel better when you rest or when you are active? Active. Does it get better with pain killers? No. And so on and so on. The it said: "You may have ankylosing spondylitis". I looked into it and there it was. All my symptoms.
I will book a Rheumatologist right away, but I can get all the help I need from the internet and people who can give me support. I am just starting college, and I want to finish it. My dream is to become a Clinical Therapist and help people. I have to read a lot, which is hard to do when you can't stay still.
I appreciate any support and and information. I want to stay positive and stay alive.
Don’t give up. Keep trying to find help and the support you need. I prayed for you today.
@@traciedurant1919 Thanks a lot. Your comment fills me with Determination.
Dear JP I know exactly how you feel. I have had this for over 15 years with predominant neck Pain. I have gone to doctors without a diagnose for 3 years, going to More than 100 appointments between diferent specialists and therapists. I have been depressed for many years and didn't know, no one believes in your pain. You need to be pretending you áre fine and this Is awful. But I now know I am a heck of a strong person and perseverant so wait for the diagnose. This Is the best you can do and in the meantime follow the "London diet" this disease Is related to a bacteria and unbalance in the gut. You can Ask them to make you the blood test for HLA-B27 this one is to show you have this SA disease.
My story is almost a mirror image of yours. I feel all your pain.
I hope you’re well. Look up healing at a cellular level. That’s what I’m on right now to help me heal from the inside and not be on pills for the rest of my life.
Thank you for sharing
Bless you ❤
Great and inspiring!
thank you Amanda!
I cried watching & hearing this ♡
Thanks for sharing🙏
Thank you for sharing your story
Great... Everything links to my self and make me cry..
Thanks for sharing your story, it's motivational
This video gives me so much hope . I was about 18 when I first felt the pain and was diagnosed for Ak about 2years later . I’m 34 now and this video really gives me hope … thanks
thank you!
Thank you for sharing Amanda 🌅 So inspiring
This video makes me feel hopeful. Thanks so much for sharing your testimonial, Amanda.
Thank you for sharing,
I am 17 years old and was recently diagnosed with Ankylosis spondylitis.
Thank you for sharing your inspiration. This September will be 4 years diagnosed with AS. The first 2 years I was treated with biologics, and I was active daily and at work. 3rd year lost biologic because of insurance change, and all the pain plus new complications have set upon me.
I still stretch and go for walks as much as I can, but need a way to get back in with rheumatologist and treatment. I was diagnosed at 50, but 20+ years late.
You are so inspiring-thanks for sharing.
you inspired me,thank you
I am also a patient of (AS) And I did think that it really helped and motivated
my mind to practise and feel reliable to struggle more but this struggling will bring
a piece of cake One day. I strongly believe that I would be able to do this and have relief from
The Pain and So Sweet of you.
Thank you for the motivation. Knowing how to muscle through the pain remains a challenge, and having the tenacity to get through it is a goal. After 40+ years of this, it's how I live my life. It's always good to see folks "hanging in there" and enjoying life as it is.
Thank you for Sharing !! I was diagnosed two years ago, and since then, I’ve been taking immunobiologicals. Truly inspiring to know about your successful treatment.
Great story thanks God bless 🙌 🙏
I can relate to all of this. You are a great ambassador for AS.
Thank you for your honest report. I have just been diagnosis at the age of 73. After being diagnosed with rheumatoid arthritis all this time.
I was just diagnosed yesterday after a major flare up of my whole body. My neck, back, right hip all ached. My knee was the size of a softball. I could barely walk. I felt so hopeless like i was never going to feel relief again. I was very fortunate to meet a doctor who identified it right away because of my bloodwork. I am HLA-B27 positive. I have yet to see a rheumatologist, because it takes a while to get scheduled. Seeing this video gives me hope. I really had no hope during the most painful flare up I've ever experienced.
Ive had symtoms since i was 14-15 years old. I am now 28. It took over 10 years for a diagnosis. Its a hard pill to swallow.
Thank you for sharing your story.
My AS symptoms started with my right shoulder when I was 16. I had mixed diagnosis for years depending on consultant. Most were adamant it couldn’t be AS, despite having the gene and my mum having AS, because there wasn’t any inflammation in my back.
It wasn’t until I was 24 I started experiencing textbook AS back pain and it took some convincing for my GP to refer to rheumatologist (she kept insisting it was because of my mattress). I was seen by rheumatologist a couple of months later, X-rays were normal but MRI and blood tests confirmed inflammation and disc degeneration on my sacroiliac joints.
I was finally diagnosed at 25 and my rheumatologist (who specialises on AS btw) confirmed that the shoulder was also due to AS. So 9 years of pain before I was diagnosed, despite knowing I had high chances of having it.
He explained that in teenagers, AS sometimes shows in the shoulders and/or knees before there is any deterioration of the back.
For my mum, it was almost 20 years of pain before she was diagnosed. They kept thinking she was making it up because she kept getting pain in different places. Shortly after being diagnosed, she had to get her hip replaced because the joint had fuse together. That’s why, the sooner you get diagnosed, the better.
I am now 31 and waiting on starting biological treatment, which has been delayed multiple times because of COVID
When I have a flare up, I find that I get the most relief from doing gentle yoga in the morning or a hot shower.
Mine started in my shoulder then moved to my hip it was the worst ache & pain 😣
Can you explain the treatment you are getting and from where?
Amazing video, im 37 and was diagnosed this morning after failed diagnosis for the last 20 years very similar story, paracetamol and ibuprofen from my gp until i went to see gp recently but instead saw a locum who immediately said we need to do some tests. 5 years ago i had been in so much pain for so long it caused my mental health to deteriorate and i made an attemp to end it. Rather than anyone look into the reason for the pain i was prescribed anti depressants. This video has given me hope of a much more active lifestyle something abit closer to normal. so thank you
Hi Amanda. I enjoyed watching your story. It seems that you live in a pastoral and pleasant place, it's great in general, and in particular to reduce stress which can also worsen the symptoms of the disease. I am Efrat, 48 years old from Israel, and I also deal with ankylosing spondylitis. Right now there is a war here and a lot of uncertainty, this combination with the symptoms of the disease - is really bad. I hope that days of peace and quiet will come soon. I wish you to feel good and continue to be active.
By the way, your dogs are adorable!
I was just diagnosed. They are going to run a few more tests to try and figure out how to tailor a treatment plan. I have been chasing symptoms and having procedures for almost 15 years.
I finally saw the right doctor.
Your story gives me hope and inspiration. Thank you.
This lady seems to be more flexible than most of the normal people who don't have ankylosing spondylitis lol... Motion is lotion for the body, exercise reduces stiffness and inflammation
Its a plus for her to be flexible. I also have AS and am also very flexible, exercise helps my body alot, when I dont exercise my body ceased up. I need to change my diet which I believe make my condition worst.
Yes but when you have RA, anaemia and fibromyalgia it is so debilitating. The fatigue I have does not allow me to exercise like this, plus I am 52.
@@jotheakston2405 You don't have to exercise this hard, but you do need to move and do stretching exercises. It really does help. And over time you will be able to do more. If you do nothing it just gets worse and worse until you can't move at all without help. I'm 53. It's never too late to start.
👍
And can aid in lowering blood pressure too. I found out by keeping a daily BP test, three times a day for almost two months. Like clockwork my records had revealed I could drop my BP at least 30-35 points within a 24 hour period! But when I didn't do a one hour stretching & 10 minute treadmill back up my blood pressure went! So, keep track!!
For at least four out if the past five years alone I couldn't get enough Glacier filtered water 💦 too!! Stay hydrated!!!
Thanks dear Amamda for sharing such an honest presentation. Very touching and very helpful.
Thanks once again.
Thank you for your story. I'm 36 turning 37 in October. I only got diagnosed because I fought the health system here in New Zealand. We came up against the same "blasè-ness' with the same BS of sorry nothing we can do. I thankfully have extremely comprehensive medical insurance ontop of the public health and that has saved my life, literally. I'm now heading into surgery #25 & 26 with both my shoulders needing to be redone and bursitis removed. I'm a competitive horse rider and I will never let AS define my one and only life.❤
Amazing to see your recovery..though treatment varies from person to person ..would love to know your recovery plan which worked for you !!
Ankylosing spondylitis, it turned out I had it all my life since I was 9, And thought everybody just live this way, a fall that caused complications and a blood clot landed in my right lung, I was hospitalized and was sent home to faint and have a more severe damages from a fall back into the tub and my body was hitting and slamming everything in the way down , hospitalized and sent home , to gain again and again, and couldn’t walk for 7 months, then ACDF spine surgery put me back in bed, then was just that , 7 years of extreme pain and finally my neurologist said I need to see the rheumatologist, diagnosed with AS, put on Humira, and let go, as if the pain will take care of it self , I’m 52 male. lost my little family because my ex freaked out and was advised by her father to leave, he hates and resent sickness, he once told me : whatever that shit you have, it’s your problem and it seems that you won’t get any better, and my daughter doesn’t need this in her life anymore, it has been a long life and I got used to having such terrible people around, but finally I stood for myself and decided to cut off ties with anybody who was mean or jerk, my condition is already a stress based disease, and anxiety hit when frustrated with situations , I decided that a guy with such issues shouldn’t be married and when my ex-wife wanted to come back, I politely declined, I’m living day to day, dealing with a sketchy medical system that pretends to know about pain, and always have to go to different doctors to see who will be decent to keep me under their care, I found that good people aren’t really as abundant as you’d think, and I’m thankful that I’m able to get around and keep my moral high. Cheers.
I have AS.. I completely understand.. I'm trying to find out what kind of jobs are out there for us..
@@Channelsettings667 what is your opinion on Benatar's asymmetry argument?
@@lovethyneibor22736 what do you mean
I feel for you. I have AS too, and it's bad. It really opened my eyes about who are the people who love you and you can count on. Now I am weak and can't do shit. Had to quit all my hobbies and work. I have never been this alone in my life before. I started biologicals and got unthinkable side effects. You have "sisu" as we say in my language. This is what you need to overcome hardships of this magnitude. Most people seem insincere and fake to me now. Feels like I was living a lie all my life until now. I wish all the best for you from Finland. Never give up!
Thank you Amanda for sharing. I can relate to everything you said, and i'm really happy that we can move again.
As you said "I may have AS but AS doesn't have me"
Thank you so much for sharing! I was also diagnosed with AS in Australia and found it so frustrating that every rheumatologist I saw told me I had to get worse to get better treatment! As a 21 year old it was so disheartening to have doctor after doctor dismiss my pain, saying it wasn't bad enough, yet I was only able to get around on crutches due to the pain in my SIJ!
have you been able to get help? in this video, she doesn't say what treatment she received.
Hi Happy for you recovery and those who recovered from AS and Who are all suffering from AS will b recovered soon.
Im 27 now, Now i was effected with AS, But 14years back also i got effected so that time doctors said it was RA i took few Tablet for that for 4 to 6 months then that pain completely cured. But suddenly last 2month back i got pain on my pelvis bone so i planned to take a rest later that i got swell on my Knee and right hand ring finger and Little finger. After 2 momths of home rest i went doc and they took HLAB-27 Test it shows Positive so now im taking medication for that now my pain is slightly getting down and im very much strong and ready to fight from AS. So don't worry people we will get recovered soon will get back to normal life don't loos hope ❤️
Thanks for sharing Amanda! Its really motivating for those who have the disease. My wife were diagnosed with AS couple years ago (her mother also have AS) and we were, like " that is it... doenst have cure, its should get worse and worse by the time..." but I decided to go further information by my self - local docs doenst seem to understand quite well all the possibilities to fight this.
I`m sure I can help her to win this. Everything Amanda said in this video was really good to hear.
I was only diagnosed with AS in my 40s although I've lived with it since I was 15 (I'm in my 50s now). It doesn't always have to get worse. I control mine with Tai Chi and other exercise, especially walking. I stopped eating sugar as much as possible and improved my diet generally. I have a couple of fused vertebrae so I always have some pain in my neck and shoulders, but it's easily bearable and I am able to live quite well without medication or pain killers. I have the occasional flare-up and need physio, but in general, I feel better now than I have for years. The key is exercise and movement, particularly exercise that strengthens your core and keeps your joints mobile (Tai Chi, Yoga, Pilates, martial arts). It's never too late to start and the benefits are enormous. I wish your wife luck on her journey. Also, no idea if it actually helps, but I always wear a copper bracelet with magnets. They're supposed to help if you wear them long term. I don't know if it actually does, but it might be worth a try.
Hi I I'm 43 from London and I have been living with a AS for 10 years and I had all the pain so understand about all the pain and suffering and then I have been told to try gluten-free and dairy-free and I did really change a lot. No pain no painkillers.
I encourage everyone to try it.
Don't give up. 🙂
So please explain your story and also share your daily meals please
Yes, a healthy diet is the best medicine!!! Take sugar and preservatives out if your diet, and you will starve AS!!
some says trying new diet will make the symptoms go way temporarly and they evemtually come back. how is it for you. still you are pain free ? please reply i will try that
Thank you for sharing. Been suffering “extreme growing pains” since I was 12 and they never stopped. Making it through days where I couldn’t get up or walk. I wasn’t diagnosed until just a few months ago at 30. Parts of my tailbone and hips are fuzed. Having a name has helped me gain some piece and better identify the things that work and don’t work for me. I was all set up to take TNF-Alpha inhibitors but I’m dragging my feet to do so. Motion and stretching 🙆♂️ have helped me an incredible amount. Water is my favorite. Opens me up so much. But my desk job makes it hard to stay in motion at times. Focusing on joint strengthening. I hike often.
I was diagnosed 10 years ago with AS and Lupus...and I understand the hot searing pain....
It's a wicked and unpredictable thing. I held out pretty well until my early 40s. The illness took a nasty turn and just shut me down. The Humira I switched to nearly killed me. It gave me extreme insomnia that lasted for 4 years after I stopped taking it because it stopped working after 5 months. Much later I found a better treatment that has been working for 7 years now. Instead of the 3 bouts of uveitis I would normally have had in that time period, I had only one very mild one and by now in my late 60s I have very little pain. I would trade that for not having fatigue. That's the game changer that just sucks all the goodness out of your life. Everyone is different.
IM 40 and got diagnosed 3 years ago ... i had a bad reaction to an immune supressent and live daily with stiffness and pain .. im lucky that im able to still go out and run ... i can handle alot of pain but i have my days .
My AS diagnosis came because of Uvitis in my eye at 44, almost went blind. My hips hurt bad in my 20’s and wasn’t able to get a diagnosis. Now my neck is is fusing, ankles and knees. Thank you for this encouraging video!
Same, I had Iritis from my AS when I was 24, didn't really have much back pain just had bad flare ups sometimes but I chalked it up to that it was just from my crappy bed I was sleeping on. Once I went through the horror of Iritis for 2 months, it was worse than the back pain could ever do and the fear of being blind from it was very scary. I didn't get any treatment for my eye for a month because I had to wait so long to see an Ophthalmologist. They prescribed me a Dilator to protect my iris from damage and Steroid drops for my eye to clear inflammation, which was $100 for a very tiny vile which is insane, it wasn't even the best quality steroid either. Immediately after using those steroid drops my Eye began to feel immediately better, the hell I went through was finally over after a few weeks. I couldn't look at any light for months not even my phone screen with the brightness all the way down. I had to take showers in the dark and walk around with a towel over my eyes. Because of the Iritis they tested me for AS and it came back positive and I was surprised because I didn't have much back pain if at all, 2 years later I started to have really bad back pain and eventually spine pain. I am almost 28 now, only had 1 flare up in my eye again about 5 months ago, I immediately got the steroid drops and it went away very quickly, but it wasn't even as close to as bad as last time. I still get flashes of pain through my eyes when immediately looking at bright light, but it goes away within seconds. Thanks to Modern Medicine my Eye was saved with no permanent damage, I still have 20/20 vision , and now that my back pain has progressed I am going to get off the ibuprofen and start taking Humira. Hopefully the medication helps me as much as it has helped others that I know with the same disease, my friend who is the same age as me said it completely got rid of his back pain and he is very overweight and doesn't exercise unlike me who exercises regularly and haven't been over 140 Pounds in my entire life.
From what I understand, AS is Rare but it's also even more Rare to have bad side effects, like being put into a wheel chair or going blind from Iritis. Majority of people with AS will live a long and normal life, you just have to deal with pain management so I hope anyone going through the same thing stays positive, I had no one in my life that believed my pain or cared even when I couldn't open my eyes to see but I made it through it, just make sure to start doing things early before they get bad.
Would love to know the action plan you were put on. I'm having trouble with being diagnosed but every points to this. Getting someone to take you seriously is the biggest obstacle x
i’m 23 and experienced the symptoms after i gave birth a year and a half ago. recently i could not feel my right arm. it just went limp. and before that, i discovered as disease runs in my family.
i went to the er because my neurologist’s nurse said they may be able to help me. er did a ct scan and bloodwork. dr said nothing is wrong. he said if i was 90 years old or a heavy smoker , he would help me. and getting an mri wasn’t needed because it wasn’t an emergency.
he basically said i wasted their time and resources.
i’m seeing a rheumatologist and i’m hoping we finally find out what is wrong, but it’s hard being young & told my symptoms are “reassuring.”
My journey started when I was 16/17. Initially it was extreme pain in the sacroiliac joint. It carried on, intermittently over the years intensifying mostly during winters. It was diagnosed as Ank Spond when I was 28/29.. Now 34, it has moved up to my rib cage and sometimes even laughing or sneezing is a painful affair. Have to wake up atleast 2 times during sleep, due to pain. Although yoga/swimming is advised for flexibility, I stick with very high volume moderate intensity resistance training, to train my mind, to endure physical pain.. On medication, my doc has prescribed TNF blockers, every 4/5 weeks, which helps to some extent, as well..
Thank you gave me some hope to get better sometimes mind over matter
Qué bestia el médico que le dijo que no había nada que hacer y que iba a terminar en sillas de ruedas! Tengo APS y pasé por períodos muy complejos y tengo secuelas que me acompañan pero tuve en claro que cuando el especialista no me convencía o veía pocos resultados, debía cambiar de médico. Hay que buscar opciones y no dejarse caer. Si no peleamos esta batalla diaria nosotros mismos, nadie lo hará. Saludos desde Argentina
You can reverse your Ankylosing Spondylitis by changing your diet which involve stop eating gluten foods like wheat, rye, barley, stop eating grains like rice, corn, oath, stop eating night shades like pepper, white, red or yellow potatoe (you can eat sweet potatoe), stop eating vegetable oils, peanut, stop eating fried foods. stop eating processed foods, stop eating white sugar, stop eating pasta, bread, dairy (milk), eggs, chicken. You can make smoothies like blending green vegetables like kale, spinach, cucumber, you can also cook vegetables, eat a lot of vegetables, eat coconut, avocado, eat home prepared/made whole foods like sweet potatoes, yams and beans. You can also do exercise like walking, cycling.
Hi there
We just watched your video and it is such a relief and a breath fresh air to see .
My wife has just been Diagnosed and is struggling with it may I please ask you for the name of the doctor and his contact details if you have them. That you want to and managed to give you the correct plan that has helped you overcome this horrible disease thank you so much
A low carb diet has been the best thing I could have ever tried for my AS.
In 2019 I was in so much pain I couldnt get out of bed. I had flare up after flare up, each getting worse. I tried a vegan glute free diets for 3 months, which had no improvement. Then I tried a low carb diet, within 3 days of the diet I saw a massive improvement no pain for the first time in over a year, that day was euphoric! I hope it works for you.
My brother had this and he had to go to nine doctors before someone knew what it was sadly. Feel sorry that he was in so much pain we didn't really understand it very well at the time. Now doctors finally know what it is.
My father got AS at 19 in the army he died 3 days ago at 82,5 he had AS and COPD he closed his eyes at the hospital then he was gone he simply decided that it was his time he didn't want to experience the risk of a wheelchair and oxygen assistance he told me "if i can't walk on my own then i will stop taking my medications" R.I.P. dad you were a warrior 1941-2024
i'm 32 and i have had AS since 20/21 it's hell on earth he had a older son who died at 46 had severe AS it was a heart attack the heart exploded so yeah AS is quite scary...
Truly Inspiring and Motivating. Thank You AMANDA!!!! Im RUSHIKESH DESHMUKH, 23 YEAR Young And im also diagnosed with Ankylosing spondylities 'THE BEST' TOday itself. I was down and out Didnt knew what i would do with this untreatable beast, but after watching your story I realized that the so called beast doesnt have me, every thing is under my control and i wont let it come in my way to reach my goals. Im coming to uk next year for my masters program and i would be very thankful if through this platform i can meet you .
20yo got diagnosed last week... And it's scary lol
@@YashSingh-rf7nk bhai same yaar 19 saal ka hu aur ye mc bimari lag gyi, aisi dard hoti h kya batau . 1 month pahle diagnose hui h tab se depression m tha ab thoda theek hu but iss dard ka kya karu
Ab kaisa he bhai tu Or medicine kya le rhe ho
I never heard of AS before until I was diagnosed at the age of 51 . I was misdiagnosed for many years. 😢
My father got AS at 19 in the army he died 3 days ago at 82,5 he had AS and COPD he closed his eyes at the hospital then he was gone he simply decided that it was his time he didn't want to experience the risk of a wheelchair and oxygen assistance he told me "if i can't walk on my own then i will stop taking my medications" R.I.P. dad you were a warrior 1941-2024
i'm 32 and i have had AS since 20/21 it's hell on earth he had a older son who died at 46 had severe AS it was a heart attack the heart exploded so yeah AS is quite scary...
I would love to know they go through the process of diagnosis, images, blood genetics, MRI's. It would nice to know a little more detail as to how it progress, not just an itch but what did happen. Did natural fusion already take place, thats sort of think. Down to the nitty gritty details. I find diagnosis of anything a difficult thing at times, so it's good to know other peoples experiences. Thank you
Been seeing a reuma here in Costa Rica but with my level of high activity , Surviving here through pain with codeine and dexametasone 😢
I used to be a long distance runner
The worst is the pain in the mornings and after long hours standing up
Please share with us the treatment plan u were offered...please
I was diagnosed with AS 5 years ago. Its been quite a journey so far!
I take the biologic Adalimumab, plus anti inflammatories.
ahhh shit, this is my story. I always equivocated my experience to the half year I spent in a hospital bed when I was 16. I thought it was that near death experience that caused it. Guess I'm just lucky. I lived with this for about 30 years without diagnosis or support
Damn almost cried
This is a "moving" Story for my Heart 💖 🙏 ☯️ 🕉️ 🧘
Amazing. I am 61 never diagnosed with AS Even tho fused spine detected after car hit me in the back. Iritis age 30, Dr said MS. Two very serious foot drop falls. Taken to emergency as heart beat almost not detected and irratic.
Brain lesion, shoulder spurs. Flare ups increasing, neck and hip pain. Unable to lift legs. Had serious fall down stairs while working for a lawyer. Serious lack of physicians here. No gp.
I cannot get any help and afraid to walk. My knee is numb then fire hot pain. My hips Crack and buckle.
Thank you for sharing, I’m newly diagnosed and I was wondering if you might be more specific with the treatments that work so well for you?
Thank you so so much for this. I was diagnosed this year.Single parent laying in bed now feeling like my life is over. I haven't been put on any therapy yet, im currently pushing to get this, but as imin NW England, they have to apply for funding to access it. Can I ask what treatment you are on? Oh this gives me so much hope seeing this, and I will do as you said look at this as a light at the end of the tunnel.
Thank you for this. Just been diagnosed after 11 years of pain and in a relapse at the moment after having my covid vaccine.
I’d loved to know the treatment plan. What did they finally do that helped!? Please share.
Another commenter has explained she’s taking biologics. At 4.15 in this video she talks about disease-modifying medication prescribed. Presumably thats what the Irish rheumatologist later prescribed .
With the greatest respect you are probably on bilogics, Ireland is very good at giving out the appropriate meds, in the UK we get nothing.
I had this since i was 16 now im 33
I’ve been in pain many years am now try to get a proper diagnosis,real bad in mornings was told I had subluxation ,but someone else said AS similar pain in area
I was diagnosed a few weeks ago. I’m still skeptical about it bc everything on my bloodwork is fine and I don’t have the gene. My mri did show deteriorating of the sacroiliac joints and I have a lot of deterioration of my left hip tissues. My hands ache in the morning. It’s so painful to lay down or sit. My shoulders pop with pain in my right one. And recently I’ve started having pain in my neck and upper back. I’m doing physical therapy and I refused to be on immuno suppressant pills. I feel like it leads down a road to more pills. I’m currently seeing a functional medicine doctor to see how they can help. I enjoyed watching this video. Give me hope to a happier life.
My father got AS at 19 in the army he died 3 days ago at 82,5 he had AS and COPD he closed his eyes at the hospital then he was gone he simply decided that it was his time he didn't want to experience the risk of a wheelchair and oxygen assistance he told me "if i can't walk on my own then i will stop taking my medications" R.I.P. dad you were a warrior 1941-2024
i'm 32 and i have had AS since 20/21 it's hell on earth he had a older son who died at 46 had severe AS it was a heart attack the heart exploded so yeah AS is quite scary...
@@eivindgjengstjohansen9625 I’m so sorry to hear about your father and his son. My condolences to you. I do want to give you some words of encouragement. You don’t have to live with AS. It is inflammation we are causing ourselves with the foods we eat. Since posting my first comment, I have been able to significantly reduce my pain without medication. I looked into functional medicine and read books on the immune system and out gut microbiome. We live surrounded by “food” that is killing is slowly. Some faster than others. I encourage you to look into your own health. Health does not come in shape of a pill. Those are just band aids. God bless.
I have tried biologics but I was allergic to the preservatives, although it helped me forget even that I had a problem. I have found walking and yoga have helped enormously. I fancy food might play a part too, but not sure.I have had flare ups again now and I am not sure what to do xxx
Try sharkliver oil and green lipped clam. Omega3 and 6 is supposed to help. :)
What treatment you have taken along with this?Please Describe
Can u pls shae the types of exercises u did from the beginning of your journey ? Thanks in advance
I am diagnosed with AS back in July after three years of pains. I am put to biological medicine and that got me a bit better in the first month. I think changing the life style matters a lot in this case as my most of the times, I am sitting home on my bed and working. I am trying to change my life style but it will take a bit of time.
Hope to get better soon.
My wife is AS patient now. Due to pregnancy. Where can I get my wife treatment to be done.
Little baby is 20 days old. Whole family sick now.
Please help me with details
@@ThinkUpTelugu go to a good rheumatologist. It should help
Try removing all Grains from your diet. No one believes me, but I am healed now, and it happened "so quickly" I am blown away with my pain free life, and was told last year to "start taking pills or you won't be able to move at all" or something like that-and treated like crap because I would not take pills to make my spine stop seizing. I am great full my desire to lose weight (by quitting Grains) was so strong....I accidently cured myself.🙏🏼🙏🏼🙏🏼
Incredible coincidence!! I live in Killarney and have just been diagnosed with AS after yrs of terrible pain and soreness. Just getting a diagnosis was a huge wait off my mind. I think I'm about to be put on DMARD's and a treatment plan. If Amanda Geard is reading the comments I would love it if you would get in touch, your experience would be invaluable and, incredibly, we live in the same place.
What are DMARD's? Wishing you well and that you get a good treatment and support
@@scientistatwork4667 dmard means pain killers
@@majiddar5695 Thank you. I have an immune disorder so I have an idea how long it takes to get a correct diagnosis. It is a big relief when you know what you are dealing with. Make sure you see a specialist rather than rely on a GP alone. Having the right support group (even virtually) also makes a huge difference !
@@majiddar5695 you're wrong. DMARDs are Disease Modifying Anti-rheumatic Drugs, which aim at subsidising inflammation and try to control the disease itself. Not the same as painkillers.
@@l.d_. dear ankylosing Spondylotus have no any treatment that can control the disease so it is temporary method to control the pain not disease
Honestly in females the progression is quite slow of As..This lady looks in incredible shape & health condition.
Hi and what treatment did you use beside exercise? Any supplments/