Hey there. I was diagnosed when I was 12, and I'm 36 now. I've had both shoulders replaced and 2 rotator cuff surgeries. On heaps of meds, and just got Humera. Mine is severe, so I've applied for disability and just got accepted. I have 5 vertebrae that have fused and cannot move my neck. It's nice to know that there are people like me in the world. Hope all is well!
Hi Steve, thanks so much for sharing your story. I’m sorry to hear everything you’ve been through. It’s good you’ve got accepted for disability though! There are definitely lots of others like us in the world - it’s why I started sharing my story ♥️ wishing you all the best! Xx
Thanks! And you are spot on about it leading to other autoimmune disorders. I've got osteoporosis and degenerative bone and disc disease as well. I can manage with meds, but the flare ups suck. Hope you are feeling okay today.
I was recently diagnosed in early August 2018 and I was overwhelmed at first with the news. My older brother also has AS and seeing the pain that he goes through helped diagnose me quicker. I’m glad that there is a community of people with AS who share their stories because it makes me feel like I’m not alone and it’s also an opportunity for all of us to learn from each other and support each other as well.
Sorry to hear about your diagnosis and brother. I hope that you’re both feeling a bit better soon! ♥️ Aw that’s exactly how I feel too & why I made the channel! I’m so glad it was helpful to you! Wishing you all the best! 💕💕💕
I'm also having the same disease...I had low back pain when I was 12 ..It took around 5 yrs to get this disease diagnosed...I seeked many neurologist and orthopedics but all they became unsuccessful to point out my disease...one of the neurologists even said that I developed the pain through over thinking and negative thoughts...finally a orthopedic doctor was able to suspect the disease by studying my medical history and confirmed through bone scan...I'm very glad to know that there is a community of people having the same disease like me...
It really is nice to connect with others who share in this pain. I was diagnosed with AS back in 1991. Daily battles against pain and fatigue...I'm sure you can relate!
@@daveglassman4779 from 1991 up to now it's about 28 years old, how about your condition now ?? Please try to answer it because there are people with AS who think that they can't life long, they think they are going to die
@@aloycesapro4765, technically speaking, the disease for me has actually progressed, but I'm not completely disabled (thank God!). Everyone is different, and symptoms and severity differ from one person to the next. It's unpredictable, too. I've got a moderate level of kyphosis, and there are a LOT of things I can't do anymore, but I am still pretty ambulatory. A person just has to take it one day at a time. Keep going, keep moving forward. Joining a support group is helpful (I'm a part of one on Facebook). Talking about it IS therapeutic. Here's part of my philosophy and plan regarding AS: Gentle movement/exercise, rest, a good diet, support and faith. Hope this helps.
As someone who is newly diagnosed, it's so nice to see someone roughly my age also with it! Makes me glad that you are able to still get around, I'm 1/3 through my nursing degree, and this is giving me hope! I thought I'd have to give it all up but I'm glad that that's not the case! :)
Ah you definitely don’t have to give up your degree! Even though I didn’t know at the time it was AS I studied for my degree while I had the symptoms. Definitely try and get an occupational health assessment though, some adaptations might be helpful if you have to sit a lot! I found a standing desk really helped me at my job, which in involved writing a lot of reports on a computer. With a diagnosis you should be eligible for funding adjustments like that! Good luck with everything! 💕💕💕🤗
Faith Kerlin I’m so glad that it was helpful! ♥️ It’s scary getting diagnosed but there are plenty of people who are dealing with AS and still living their lives! Good luck with everything, stay strong and enjoy dancing! 💪🏼✨ xx
I was your age when i started with what I still struggle with daily. I was told by a dr to stop dancing, stop exercising , etc. So i did, and when i was 18 (im 26 now), the drs told me that it was the worst advice i could have been given. At 13 dancing was basically my entire personality. It was my passion and i was devastated to leave. My point is yes take the drs seriously but consider what they are saying i dont know why they even suggested stop exercising because it just made everything seize up
I know this is a late comment but hopefully you will see this. Thank you very much for making this video. There really aren’t enough younger people talking about this.
I am starting my freshman year in college and I was diagnosed a year ago! It has made me have to change my plans, stay local, and not go full time. But I believe it is so important to keep ,moving forward and stay in touch with your passions!
Hughes Vernon Sorry to hear you had to change your plans. Great that you’re at college perusing your dreams though! I couldn’t agree more! Good luck with everything 🤗
Hi, I can sympathise with you and understand the challenges that AS sufferers have to face on a daily basis. I first suffered the symptoms when I was around 10 years old and am 62 years old now, so like you presented symptoms at a young age. Back in the 1960's AS was not even recognised so sufferers would have gone undiagnosed. Despite this debilitating disease I have managed to live a full and active life, including a 30 year career in the armed forces. In fact, my condition wasn't correctly diagnosed until I had my discharge medical when I left the military. My treatment towards the end of my career was physio therapy and painkillers, but the key factors were, I didn't know what my condition was and remained active despite the pain. Even though I am much older now I still remain active and listen to my body and adjust my activities accordingly. My condition progressively got worse as I grew older and I managed to tolerate the pain until the medication became ineffective and the side effects outwayed the benefits. Key points are to stay positive and keep active and enjoy life as I have.
Hi Tony, thank-you so much for sharing! It’s great to hear that you had such a fulfilling and active lifestyle & were able to work in the military for so long. I completely agree that keeping active and listening to you body are key in managing AS and it’s great to hear from someone who has lived it themselves. I think it’s so important to keep positive and try to keep moving forward, doing what you want to do in life. I’m hoping my videos inspire that in people! Good luck with everything & thanks again for sharing! 🤗
Hi guys, I had AS over 40 years, started in early teens, let me say it gets better and less painful as you get older. I'm pain free now. Look after yourself , keep exercising, eat well and enjoy life. It's not death sentence. I haven’t let it stop me doing anything in life. Good luck. 😊
Please all of you with AS, do the no starch diet. It absolutely works. I’ve gone from 9/10 pain to none, without meds, by identifying what causes my inflammation.
I was diagnosed in 2014, but suffered the symptoms for approx 18 years, therefore I have fusion in the neck, back and sacroiliac joints, I am now on Humira, which made a world of difference with the pain, but the fatigue is what I now find the hardest along with the flare ups, thankyou for being open and honest, it’s a difficult disease to get people to understand how it affects you
Thanks so much for your comment. I’m sorry to hear about the fusion and the fatigue that you are experiencing. Glad that Humira is helping with the pain though. Wishing you all the best! 💕💕
Hey there, I was prescribed Enbrel for a year, and I really didn't get relief. Plus all those side effects, like cancer, really bummed me out. I have surgery in a few days, and will start Humera in 2 weeks. Does it work well?
I am on cosyntex myself and have found it great. Haven’t had a fusion since I’ve been on it. But like you, I find the fatigue the hardest to cope with. Can’t do a lot and get very lonely too because of it all.
I'm 53 & joined the AS club 5 years ago. I've been through 2 heart attacks made it through ok had my gall bladder removed precancerous and cancerous polyps removed from my large intestine and L5-S1 fusion with hardware removal . AS is the worst thing I have ever been through in my life. It's in every major joint of my body now. The will to move and walk is really getting hard. I'm doing everything I can not to be bedridden and not let this disease take my life away. The only way I get by right now is using Cymbalta to block pain in my brain and even that is getting hard to deal with now. I feel for somebody so young in your position. Good luck in dealing with this disease. PS Humira and Enbrel were a fail for me.
green dream Sorry to hear you’ve had a tough time of it. Good luck with everything! Thank you for sharing your story & experience. Wishing you all the best. 🧡
Hi! I just wanted to thank you so so much for making this video. I was diagnosed with AS about a month ago after about 2 years of being misdiagnosed, confused, and sometimes just not believed, which in turn made me wonder is my pain really that bad? Of course it is, and I'm learning how to deal with it now through injections, naproxen, and lots of exercise. It also started with back pain while trying to sleep. The tightness would get worse after sitting for a long period of time, and only be relieved through movement. As a theatre artist, I chalked up the pain to long rehearsals, teaching, and being on my feat all the time. Now, in my early 20s and graduated, I am FINALLY getting the help I need. I also only have it on one side, funnily enough. It is so refreshing to see someone who seems to be in somewhat the same lifestyle as me talking about the disease. It is scary, painful, and hard to explain, but it is good to know there are people out there lie yourself, and that you can manage your pain and maintain the life you want to live. Thanks again! Much love
Thank you for sharing your story. I have been diagnosed with AS since a month ago and I was astounded to notice how similar your case is to mine. I also have hypermobility in several joints and my affected area is the thoracic spine. I'm glad to see you're pursuing your dreams! All the best!
Glad you're sharing your story. Talking about it really DOES help. I too, have Ankylosing Spondylitis. Been dealing with this for the past 28 years. AS is a real pain in the you-know-what! Anyway, thanks again for the video here - it's nice to connect with others who understand this painful and debilitating disease.
Hello guys I am Indian and I have diagnosed with AS two months before and now I am 20 years old but fit and cured my AS 90 percent. Now I have hoping it will not happen again and I will live normal life. I am taking physiotherapy and medicine like indomethacin and sulfhasazine God bless all people.
@@ankitpandey1946 brother don't worry so much, keep calm and pray for your better health. Bro meri halat bahut kharab thi, mai dande se chalta tha aur wheel chair pe aa gya tha. Pehle to maine allopathy me treatment karaya aur 2-3 mahine physiotherapy karaya halka relief mila. Aur presently ayurvedic treatment le raha hu. Dekh bhai bhagwaan ek exam lete hai. Mujhe dard mila to 20 ki age me sarkari naukri bhi mil gyi. Isiliye be happy and motivated
Happy for u! For me last year was diagnosed. My full body stopped moving and my fiance left me, I lost my muscle mass(17kg), my savings got wasted in buying medication and paying diagnosis bills 🙂I was fired from job I become totally dependent on my parents 🙂but u know still I am crying just crying imaging what the hell happened to me
Was diagnosed 4 years ago and decided to go down the path of Ayurvedic meds and using food as medicine. Went 90% vegan, regular exercise and as long as you have a low body fat count you will be able to live a normal life
I was on pain meds for 10 years, so i was numb, but when I quit them all, I started having back pain that wouldn't stop. Couldn't sleep. I got diagnosed with ankylosing spondylitis on my birthday this year, so I am new to all of this.
Just been diagnosed with this I've had back pain since I was 14 , I am nearly 30 thank you for making this i also have just been told about it been offered medication and left to my own devices X
I am 19 and I just got diagnosed with AS after years of pain and being told it's all in my head. It's scary being young and not really knowing the future. It is so relieving to see someone in a similar age with similar life goals
Just found your video. Hello! My AS started when I was 15 and started as lower back pain, hip pain, numbness, insomnia but I wasn't diagnosed for 16 years (was diagnosed only in March this year). Due to this it has progressed quite a lot and my mobility has worsened a lot. For the last 6 years I have got worse and worse and it is hard being 31 and friends and family not understanding as I am young. I continually down play it to everyone especially since I have a 3 1/2 year old daughter. I like you felt embarrassed talking about It, felt like I making it all up and because it has took so long that I would never find out what is going on. I also have joint hypermobility too and normal bloods. I've just started cimzia to try and slow the progression as well as arcoxia and tramadol. Kudos to you. I've just come back from being in Spain for 2 weeks and not sure I could do further travel. Coming back has thrown me into a huge flare. I hope you are well and have a pain free day.
l cub Thanks so much for sharing your story. I’m glad you’ve finally got a diagnosis and hope that the medication starts to help your symptoms more! It took a while for me before I really noticed the effects so don’t lose hope. Good luck getting over your current flare up & with your daughter!
This is brilliant, so glad I found you. I have AS too, quite severe, just thought I’d type it in the UA-cam search to see if anyone else has it and I found you! I’ve subscribed and look forward to making my way through the rest of your videos. Thankyou for putting this info on here to help others suffering so we don’t feel so alone.
Thank you so much for this video! Loved it! I'm 26 and was diagnosed 2 months back. Was 23 when the first symptom (hip stiffness) appeared. I'm HLA B27 +ve & have inflammation in my left SI joint. Accepting and getting over the shock of the initial diagnosis was one of the toughest things I ever had to do. It's comforting to know that I'm not alone in this. :)
I have hyper mobility which I’ve knows about for years and in jan, I was diagnosed with AS literally such a similar story to you but had to go private just to get someone to listen to me! I had an MRI and my whole spine neck and hip joints. Didn’t test positive for the common gene either! Just happy to have answers after years of trying to get them:)
Becky Louise aw crazy you have such a similar story to me!! Sorry to hear you had to go private to get listened too but so glad you’ve finally got answers! Sending so much love 💖💖💖 xx
Thanks for sharing your AS story! I've been diagnosed with AS for 15 years now. I'm 39. Have flare-ups a few times a year. But, recently I've begun to suspect my tummy troubles may be AS in origin. I was on the NASS site looking up biologics and linked to a youtube video on it. I then saw your video, and it's nice to just hear about someone else who's also going through it. So, thanks for sharing!
I am over three decades living with AS, ever since I was in my late teens. I was undiagnosed for about half of that time, and it was an eye doctor that diagnosed me. I was prescribed indocin, which helped but I have not taken anything for years. I get a bad flare up once every few months, as is the case now, but I just deal with the pain in my SI joint by stretching, exercising, crying, and if really severe than I take a few ibuprofen. I know that AS affects people differently, and I did not see any mention of eyes. Please please please, if anyone with AS ever feels that your eyes are slightly off or sensitive, drop everything and get yourself to an ophthalmologist immediately. You may be in the beginning stages of an iritis / uveitis episode, which is the inflammation of the iris. To put it plainly, I would rather have every tooth ripped from my mouth using rusty pliers and no Novocain than deal with Uveitis again. It comes on very quickly, and you can go from a normal day to suffering the worst pain you will ever experience in a matter of hours. I can take body pain for days on end and just deal with it, but Uveitis gave me a whole new appreciation for severe stabbing pain. I now know what to look for and am ready for it by always having the proper eye drops nearby. The drop to knock this out is prednisolone, but you will need another drop that dilates the eye as well. I hope that my terrible experience will help someone else to avoid the pain. The drop will help almost immediately, although prepare yourself for no contact lenses and a dilated eye for a month or two afterwards.
Interesting video, I'm going through the process of diagnosis but suspect AS. Sounds like you've been incredibly brave and stoic dealing with the pain of the condition.
The biggest thing as Someone who has AS and searches the internet for videos on it.. I look for perspectives of the disease from the people who have it, not all of the dated Doctors videos from 7 years ago, etc. I want to get confirmation and reaffirmation that the symptoms I fee everyday are not in my head, and make sense when you explain them to someone who knows what AS is! My biggest issue is being believed by a bunch of non-believers who think I’m faking it. My doctor won’t even refer to me to a rheumatologist because in California, our area of 750k citizens, has 2 RA doctors serving over 200 new patients. They said Covid is more important than me getting a diagnosis, and it’s been over a year I’ve been trying. Meanwhile I’ve lost 80lbs, I’m 99% sure I have AS, I already was diagnosed with EoE but they don’t know what caused it... duh, my AS inflammation! Oh yeah and the Neuropathy pain isn’t talked about enough. Years of inflammation killed my feet and hands. As a guitarist, my job is a struggle everyday now. But I do it anyway! A.S. Will NOT take my music away from me. I don’t care how painful it is.
Great info. I was diagnosed with AS this past year but now that I understand it better, I know that I had symptoms in my 20’s. In my 20’s, I, an American, traveled all over the world. I had times where I hurt badly as by now I seem to have nearly all the symptoms. I still traveled and saw the world.....something like 25 of them and actually I lived in the Philippines for 5 years, and I wouldn’t change taking any chances because of the AS label. You go, girl!
Thank you so much for making this video! I'm about your age and my mum has AS and it's possible I do as well but I've been hesitant to seek out getting tested for it or not because I'm quite scared of the idea of having it. So it's inspiring seeing someone like me who has it and is coping with it, sounds like you've been so strong to be diagnosed at such a young age and still pursue your life the way you want to while managing your condition :)
I am from India, I have been diagnosed with AS since 10 yrs back, now I am 32. I am feel courageous having seen you that there are any one to advocating for AS. Thanks
I received my diagnose yesterday and was worried because I am about to move to a new country in a month. Glad to know that you are coping with it while on the road. I am not sure how I will keep up changing my life completely like this but you gotta do what you gotta do right heheh
Definitely! It can be tricky getting organised at points but it is 100% doable - just make sure you put yourself first and care for your back as much as possible. Good luck & I hope you have the best time travelling! 🤗♥️
I had very hard back pain since the age of 10. First, the doctor told me that it was because I was growing up. I did physiotherapy and it got worse. Years after they told me that it was in my head and long story short, I was diagnosed with AS when I was 22! So my sacroiliac joints looks pretty bad now... I have tried all the anti-inflammatory medicine possible and nothing worked for me. I have had anti-TNF (Sympony) which worked in the beginning and I ended up having antibody to the medicine. I am trying another one (Humira) now which is not working... So now I am in a lot of pain and I am so glad that I found someone who openly talks about it on youtube. I also felt so lost with the diagnose in the beginning and I am still a bit since the medication is not doing much anymore... Thank you for this video, it is good to know that we are not alone even if it is sad to see that others are also struggling with AS. I wish you all the best to all of you in the comment section!
Thank you so much for sharing this video and providing all those helpful links as well!! I'm 32 years old with AS and my neck is fused. I'm on Humira now but took about 20 years to get diagnosed so my SI joints have so much damage too. Talking about it and raising awareness is key so people can get on treatment sooner to prevent fusion!
I also had pain since I was mid college (about 21). I noticed the effects heavily as I could never get a full night of sleep. I would wake up in the middle of the night and just could not stay lying down. I started getting into the habit of placing 3 pillows behind my back (in order to give it some sort of curvature) and that helps sometimes. I got diagnosed this year but I knew all along something was wrong (even though everything was normal until the MRI). To diagnose it they used the MRI which showed sacroileitis (both sides) and a specific blood test called HLA-27 which in some cases of AS 6can be positive (as mine was). To relieve the pain ibuprofen was my way of getting a few more hours of sleep but regarding NSAIDS( ibuprofen, naproxen, diclofenac) I would be cautious not to take it without food as it can lead to stomach issues (omeprazole helps to reduce the risks). You can also get injections in the spine which help temporarily. Also has anybody noticed that when we get a cold or something that leaves us feeling drained, the pain is much lesser without medication? To me at least it does.
I was diagnosed when I was 38 and have had the symptoms since early 20s. I'm now 56 and yes living with AS sucks! It's cost me 2 marriages maybe a 3rd. I'm on Simponi TNF blocker black box injectable drug. A.S. can cause other medical problems too, I've had the eye iritis, gerd, leaky gut, diabetic type 2, high cholesterol, high blood pressure, additional arthritis in my shoulders, hips and groin area.To make matters worse I only have 1 kidney the other one didn't fully develop. My brother in law thinks I'm a lazy SOB, kinda hurts to hear from your nephew that you like to lounge. I wish parents wouldn't talk about family members in front of their children, yes AS sucks!
Hi! I was diagnosed in 2011, but the signs of it appeared in 2008. 10 years have passed since that moment. What really helps me to live fully: 1) non-steroidal anti-inflammatory drugs (Arcoxia), 2) physical activity (fitness, cycling, boxing, morning excercises and excercises during the daytime, swimming, kinesitherapy). Of course excercise intensity depends on your current health status, cause in case of exacebration you can hardly be active and can even worsen the situation. Thus, it is really important to discuss your physical excercise programme with a doctor and also find a qualified coach, 3) healthy diet - it's really individually, because in my situation, the cause of exacebration was I ate too much pastry, salami and fast food. It's better to exclude those foods from your diet, 4) Fasting - I usually do it 1 time a month, 7 days a time. No food during the fasting. I do it under the remote control of a physician. It really works, cause during the fasting it is possible not to take Arcoxia, because you feel well. But after the fasting is over, I can feel pain again, but it's not so painful as it was. It also helps to get out from desease aggravation. I have it every spring, and it will be enough to fast 2 times (7 days per time), with one-week interval. Good luck! And, please, do not try fasting on your own.
That is great. How do you find time for all that. I get up at 5am. Try to get through my work day. Get off at 4 . I am exhausted well before I leave work. Then I go home and get my boys homework, dinner, showers. Let me know your secret. Because the way I am doing it I have no time. 🙄
Thanks, I am also an AS patient from India. We can discuss our problem raises from this disses to reduce the pain symptoms also. Can we share each other about this problem and I hope we get any help as we r from different countries. There may be different treatment also in our country
I had bad symptoms starting at 21 years old. Didnt get diagnosed until 31 years old when it fully attacked my si joints. Chronic back pain at a young age and during sleep is not normal people need to go to a doctor.
Hi, sorry to hear about your symptoms. Glad you’ve finally got a diagnosis. I completely agree, I think it’s too easy to normalise chronic pain & more should be done to raise awareness of AS in order to help others 🧡 xx
Yea, I am thinking this is what I have. I starting have pain in the SI joint in early 20s. The doctors said it was SI disorder at the time. Now fast forward to now 42 year old. I have been suffering with pain on and off. It became chronic 4 years ago. Onto many doctors not finding the problem. Many misdiagnosis. Now they want to test to see if I have the gene hla b27. That's when I learned of anyklosing spondylitis. I have many of the symptoms. The rhuemtology test came back normal as she said in the video. They did an MRI without contrast and said that was normal as well. They want to do another one with contrast to see if there is inflammation. Ugg, I am tired of going through tests. Last year I was diagnosed with an autoimmune disorder alopecia areata which caused my hair to fall out. They say if you have one autoimmune disease you might have another. I am so tired of being in chronic pain everyday, I wish they could just cure it and be done with it.
@@rachaelpeterson1767 wtf my hair too they're starting to fall from the back right side of my head but I'm pretty sure its cz of vitamin D and B12 deficiency . Btw I'm 20 y/o and suffering Frm AS
I was just recently diagnosed a few months back. I felt scared too and kind of do still but less. My inflammation keeps rising and I’m medicated with a couple different pills already. My doctor told me that I had to be put on Humira and that’s what has me a little frightened at the moment. It makes me feel better knowing that I’m not the only one. I guess you know but at the same time feel so alone. Thank you for telling us your journey with this disease, it really helped a lot.
I was fine one day and never had any joint issues. One day I woke up and I couldn't get out of bed because my hips wouldn't move and the bottom of my heels hurt. The pain in walking was so bad that I couldn't even shop for groceries anymore. I went to a chiropractor and physical therapist but the pain wouldn't heal. My MRI showed sacrolitis and osteitis pubis, which would explain why the pain all around my hips on every side. I finally told my regular doctor that I injured myself and I don't know how I did that and it's been a year and I'm not healing. She then took a blood test and I tested positive for inflammation and also rheumatoid factor. She sent me to the rheumatologist where he basically walked into the room and said that I have anklyosing spondylitis. So far I've had this for two years, no fusing yet, and prednisone is my best friend. I'm on biologics and it does help.
Hi Amanda, thank you so much for sharing your experience. I’m so glad you find biologics help you and that you’re doing well overall. Wishing you all the best xxx
Never let what other people think effect your outcome. I've had to use a cane since i was 45 because of the pain and stability. I hate it but I know some people who rather not go out in public because they are embarrassed being younger having to use an old person mobility devise. But that's the worst thing to do. You need to get out and live your life.
I was 26 years old. I felt alone. Because when I was diagnosed there was very little known about it. Because I am 45 years old now. But I didn't allow it to stop me.
Thanks so much for this! I'm waiting for a diagnosis but I'm 95% sure I do have AS. Seeing your video has made me feel so much better about the diagnosis. Especially because your life kind of mirrors mine... I left home in March 2018 to move to Vietnam and I've been living in asia ever since so I was kind of worried about how I was gonna keep up this kind of lifestyle with AS but seems like it's totally possible. I'm going to watch more of your videos now :D
I want to thank you for doing this video. As a long time sufferer of AS I need to correct you on your comment about bone fusion. I was diagnosed with AS in 1997 since than went through different medications most of them useless 2012 I was on Humera .what I want to say is after everything in 2013 my neck and spine was fused there is no good treatment but exercise ,diet and emotional support from family and friends.
I had my appointment with rheumatology around a week ago. They have pretty much told me that I have AS, pending the bloodwork comes back supporting the diagnosis, but my doctor is almost sure at this point that this is what I have. Both of my sacroiliac joints are showing the signs of AS, so much so that my doctor said it was "extremely concerning for a 25 year old to have hips that look like that". Not showing fusions in any other areas of my body, but I am dealing with pretty painful swelling in my neck, back, elbows, and my knees. Luckily I've seen this coming for a few years now, my father was diagnosed with AS when I was a baby, so I've grown up my entire life seeing how the disease affects the human body. Unfortunately, my father has such a severe case that it has caused almost complete spinal fusion, and he has also had a knee and hip replacement due to the progression of the disease. But despite all of this, he is still as active as he can be and lives a fairly normal life. The thing that tipped me off is that the pain started in my knees, which is also where my father's started before he was diagnosed. I feel your pain, as I was also a runner prior to this, and I very much miss it now (lol). For the moment, they have me on a daily dose of Celebrex (celecoxib) and after my bloodwork comes back, we'll decide if we want to keep me on that or potentially move me to a biologic like Cimzia or Humira. I'm also on Flexeril and Hydrocodone 10mg to deal with sudden flare-ups of pain, which is often at the moment as I live in the southern US and it is currently hurricane season.
Hi, I’m so sorry to hear about your symptoms and experience so far. I really hope that you can find if it is AS soon and find a medication that works for you. I hope that your dad is doing okay too. Always here if you need to chat 💕🤗
Thank you so much for this I got diagnosed with this 4 months ago I also have another autoimmune disease called pernicious anemia so it’s been really difficult
Hey, thanks for this video, im always looking for women who have our condition, when I was diagnosed 10+ years ago it was really uncommon for women, back then it took me 2 years from the start to be diagnosed. I find it interesting you are hypomobile, as am I. I still remember the early days - it can be a bit scary especially if no one else in your family is experiencing symptoms. Im the only one in my family. The important thing is to take it seriously and use all the resources you can as early on as possible. Its really easy to brush things off while you are younger and things "aren't so bad" but the longer you can keep the condition progressing the better life you will have. Thanks for sharing, wishing you the best.
Thanks so much for this! It's great to meet other women with the disease and hear some of your advice! I think you're right that its important to start using resources as early as possible and I will definitely carry on making an effort to do so! Thanks again and take care. :)
Hlo everyone ....I have recently been diagnosed with this problem .. M so depressed don't know what to do and how m gna manage this disease...Please guide me with ur experiences. Thanks
nanu sharma Hi Nanu, I’m sorry to hear that you’re finding it hard. If you have an AS Society available where you are, then personally I found them to be a really great source of support. I think in some respects it’s normal to feel sad and afraid after a diagnosis so you’re not alone in that. I know that I certainly did. It’s it’s really severe then maybe consider speaking to a professional about how you’re feeling. I just want to reassure you that you are not alone and I certainly felt that things got better as I realised I could still achieve what I wanted! I hope that helps. Good luck & stay strong! Izzy x
I am currently residing in Melbourne on student visa and treatment here is too expensive .... .As u are also suffering from same disease can u please tell whats ur routine Thanks
nanu sharma bro... only yoga and Ayurvedic medicines can cure this problem... i am suffering from last 2 yrs but yoga helped me alott... someone who can't even walk properly is now playing badminton on regular basis... so don't get late... start practicing yoga and remember, don't push yourself too much while practicing... yoga will take some time but it will definitely improve your mobility... take care😊
It started with me when I was in first grade in the 70s but back then. The Drs did not know what it was I have never met anyone with it except for lead guitarist of motley crew Mick mars
Diagnosed with this today..I'm 18 just trying to get out on my own and I'm honestly terrified..though I also have a ruptured disk so I will have to have surgery as well...luckily we caught it I guess earlyish cause I've only been dealing with this for 8 months..can't sleep..can't work..still somehow getting through college..hopefully it will all get kind of better
Thanks for doing this video! Until recently/youtubers, its been so difficult to connect with others on this. I was diagnosed at 20 years old. Doctors missed the diagnosis for about 2 years before I demanded to see a rheumatologist after learning my grandmother has this disease and putting two + two together. Doctors would say I was "flexible" therefore everything was structurally fine even though I was getting lightening sharp pain in my lower back/hips that would zap me at random times so strongly I saw black, and I would also get "locked up" with inflammation and have to limp around at 20 years old! I'm now 32. I'd say until about 3/4 years ago it was on/off with pain + symptoms but since then its been a constant low-grade pain and stiffness. I've given up on doctors because all they offer is biologics which have their own set of symptoms and repercussions, opting to try out nutrition-based remedies and exercise even when in pain, biking helps! But obviously there are times when its been so bad I'm just home-bound. I tried LDN last year, pain-free for about 9 months and was even able to start running on the treadmill but then it stopped working. It affects my life completely, but I never give in totally to the identity of it because I do believe the mind and spirit can affect health outcomes. Craniosacral therapy and hatha yoga (alignment-based, not fast flow) has been essential to my healing!
I appreciate this video so much! I was diagnosed just under a week ago. I've had small symptoms since about 14, but they symptoms didn't really pick up until I turned 17. It started as a snapping in my hip and I thought I had just injured myself while working out. but sure enough it never really went away, just came and went in phases. I am now 21, and after the last 4 years of searching for answers, my doctor finally ordered a bone scan where we found I had AS. For me though it is the worst on my left side, affecting my SI joints, left knee, feet, upper chest where my ribs connect, and the C7T1 junction. The only reason I found out so early is that my mother has AS and once I started experiencing symptoms, pushed to get answers and be checked. 4 years is a long time, but there are so many who wait so much longer! my mother took over a decade to get a diagnosis
thank you so much for sharing your story.i was diagnosed by AS last month and i was really dipresed about this . your story really helped me. pleas share the workout too.
Hi Izzy Thanks for sharing your story. Just seen your video. I was diagnosed with AS about 2 years ago. To be honest I've been trying to ignore it but it's just hit me really badly this week. Can barely walk. What medication are you currently taking? I've got to start taking action now. It's good to know that you can manage the symptoms without it ruining your life. Kind regards Jamie
Hi Jamie, thanks so much for your message. Right now I am on a medication called Piroxicam although prior to that I was taking Arcoxia. Here’s a video I filmed on my experience of Arcoxia where I explain how it works - ua-cam.com/video/H0iNYFg39_I/v-deo.html ..and a more recent update where I mention my experience of Piroxicam so far - ua-cam.com/video/PR0Zo6SlZYk/v-deo.html So sorry to hear you’re struggling this week. Make sure you take time for yourself ♥️ sending lots of love and hope that things improve soon. Izzy xxx
I was recently diagnosed with AS and the back pain is phenomenal. (I'm only 15) there's no damage. But I'm waiting to be able to do physical therapy. But I was wondering if u had any notes about it
This was a informative video :) Thank you, I have been taking note of my symptoms to take to the rheumatologist when they refer me, I just need to do some blood tests first. I wish you well
Thank you for sharing .I was diagnosed today,and I am 25 years old .Didn’t know a lot about it.English is not my mother tongue,could you give me more information about the disease and recovery exercise you do to keep the spine healthy?
So glad i found this. I have been for a few blood tests, i had test done for rhumatoid arthiritis it came back false negative, my test for imflammation came back positive, my vitamin D came back low. I had xrays in my back/hip they came back as nothing showing, my neck and back came back saying i have arthitis. Its so confusing as my worst pain comes from my back and hip, although my full body aches, i wake up 2-3 times a night with my forearms, elbow and shoulders aching, my hands ache, wrist, ankles, hip and lower back, And my groin. Also have plantar fascitits in both feet. I have been referred to a rhumatalogist but going to be a long wait. Dont know if i can wait months i have been trying to get this sorted for years this is them just doing these tests. I am so down about my day to day life, my pain on a good day is a 7 out of 10 on a bad day 10. So tired and fed up. Take meloxicam and dihydrcodiene, vitamin d, and onzeprole. Is AS classed as a disability in the UK?
I think I have this disease and I'm certain my dad has it, but because of my age, my doctor just thinks this is growing pain or I'm faking it due to my sister's chronic lying.😭
Thanks for this! Recently diagnosed at 34, but I've had hip pain for as long as I remember.. then it turned into all over random joint swelling (fingers, wrists, ankles, toes). Drs never listened, always said it was growing pains or sciatica.. all my blood work came back ok but I have tested posi for the AS gene itself. MRIs and xray are also pretty normal, but the dr did say that my right sacroiliac joint appears loose and a bit more separated than the left.. just waiting on the referral to a rheumatologist now. I cant wait to be treated and feel better... I cant sit, stand or walk for more than a few minutes.. use a cane and have even resigned from my job. Just want to see the light at the end of this tunnel, if there is one?
Hi. I have also ankylosing spondylitis. I was nit taking medicie because I know the side effects. I tried the method of dark-field microskopy and It is a method the can find many illness in your blood which is not possible to find with blood tests. My procedure with this illness is I changed my nutrition to vegan and take natural madicine they gave me like basic powder because of my acidose they found and zeolith for the heavy metals in my blood and some natural vitamin B complex. If you could, I would recommend you also to try the dark-field microscopy. It is a few weeks ago I have done it and that I take take natural medicine and I have not so much pain anymore as before. I hope I could help you and wish you to stay healthy🙂!
I imagine Maria, this is for sure not easy. I started heavy symptoms in 2002 and was only diagnosed 2 months ago as I had a severe uveitis in November that made me searching... I sometimes feel not being diagnosed for 17 years has been in some ways a blessing. I wish that you reply well to Ibuprofen or one of those, as I react very well and it helps me a lot. I also started wearing shoe insoles that helped a lot with pelvic pain. But I believe most important is that you stay positive and optimistic. Not knowing what caused me in 17 years thousands of painful days gave me no choice. I lived a very intense full life so far. I kept doing all sports I wanted when possible, traveled extensively and was even heavy into clubbing for about 10 years. Don't let them get you was always my Motto... Eat conscious and healthy. Live life Maria!
Michael P Thank you so much, no Ibuprofen or Arcoxia dont help me anymore, I need Biologika (Simponi) I feel better now but not good. I do a lot of Sport and eat healthy and I hope i will feel better soon... Thank you !
@@marialolou6100 I am sorry to hear that Ibuprofen alone doesn't help anymore. Let me know more please about your experience with Biologika. I only learnt about this 6 weeks ago when i learnt officially I have AS, after hearing first time about it a month earlier only. So i am concerned of side effects of the Biologic treatments and any feedback from users is appreciated as I might also at some point have to go that way. My main affected area was the hip and center back, but after the eye, it now really bothers my shoulder/ neck area. What is your experience? If you prefer, email me on michaelisairborne@gmail.com . If you are part of a community somewhere else, let me know please as I am as I said very new to this, although I have it for 17 years.
Michael P my english is not so good. But I Hope you will understand it.😀 Biologika are my best Friends now. I can work, sleep, go out and have fun without Pain. Sometime it hurts but I feel really better. I also was afraid because of the side effects but I dont have any of them. Two days After I get the Injection I feel really tired and like a cold, but Then the Pain goes away and I feel better. I get the injection every month, 4 days before the injection I feel again a Lots of pain and I take Arcoxia 120mg. But I really have a better Live now. Hope you are good !
I had pain in my back for 12 years before I was diagnosed in 2012 when I was 36. I was diagnosed in the March and in April my sister gave birth to a still born baby. I really don't know how we got through it as a family. I just pray that my niece and nephew won't get it x
This Izz The Life Omg thank you! I’m a nurse in the US and I know I have all the symptoms, high cpr, sed rate, anemia of unknown cause, chronic vit d deficiency even with mega dose. I have psoriasis and psoriatic arthritis and my hips, SI and bad are rapidly degenerating. I also had a lot of fertility issues but have one little boy now. I used to be so active and was a diver and loved traveling so I loooove what you are doing. It is hard to not be able to do what I used too. Thank you for the making this VLOG it can be so depressing and this is so amazing and hopeful for people like us. Thank you❤️
John S aw that sucks! I really hope you find the cause and your symptoms improve! I think the MRI and HLA-B27 test were the 2 most definitive factors in my diagnosis as my CRP came back within normal limits & at that point I hadn’t experienced any additional complications! But I will deffo do a video and discuss in more detail. So glad that you found my video hopeful as that’s exactly what I want to inspire and show people! Thank you 💖
I'm having a flare right now hence why I'm watching this . I noticed a comment that someone takes arcoxia also known as etoricoxib available in 30, 60, 90, 120mg. I'm usually take 90s cos I don't always take them only when the pain starts but sometimes like now it gets ahead of me . So I take 120 but you can only take these for 3 days as it can cause stomach ulsers. With the etoricoxib you have to take emeprazole which help the stomach deal with these strong anti inflammatorys hope this helps .
How are you doing now Dear?? I also diagnosed with it in December 2020 😭😭 rheumatologist suggested me Humira 😩 i am so scared to using Biologics 😭😩😫😖 but now my condition getting worse day by day…
Juan Le Garcon Hi, no although I have been offered immuno-suppressors, I currently just take the anti inflammatory medication. I actually talk about this a bit in my most recent video. Hope that helps! Xx
Get a job with good medical insurance and start using Humira. I was diagnosed in 2005 and was becoming disabled fast. Started Humira in 2006 and has improved my symptoms by 90%! There are other health risks and everyone is different, but my daily life has improved greatly from Humira. Without it I would be in a living hell.
I have a question. Has anyone dx with this also dx with adult scoliosis? Bc i have all the symptoms of this . but havnt seen if there are any info on as and adult scoliosis
Hey there. I was diagnosed when I was 12, and I'm 36 now. I've had both shoulders replaced and 2 rotator cuff surgeries. On heaps of meds, and just got Humera. Mine is severe, so I've applied for disability and just got accepted. I have 5 vertebrae that have fused and cannot move my neck. It's nice to know that there are people like me in the world. Hope all is well!
Hi Steve, thanks so much for sharing your story. I’m sorry to hear everything you’ve been through. It’s good you’ve got accepted for disability though! There are definitely lots of others like us in the world - it’s why I started sharing my story ♥️ wishing you all the best! Xx
Thanks! And you are spot on about it leading to other autoimmune disorders. I've got osteoporosis and degenerative bone and disc disease as well. I can manage with meds, but the flare ups suck. Hope you are feeling okay today.
@dagmastr They used to work, but had been on a decline for a while. It seemed that once I had one going, the other ones started to get worse.
Glad you are utilizing the community around you. Staying connected really helps. Makes a huge difference!
Steve Mack do research on boron and borax
I was recently diagnosed in early August 2018 and I was overwhelmed at first with the news. My older brother also has AS and seeing the pain that he goes through helped diagnose me quicker. I’m glad that there is a community of people with AS who share their stories because it makes me feel like I’m not alone and it’s also an opportunity for all of us to learn from each other and support each other as well.
Sorry to hear about your diagnosis and brother. I hope that you’re both feeling a bit better soon! ♥️
Aw that’s exactly how I feel too & why I made the channel! I’m so glad it was helpful to you! Wishing you all the best! 💕💕💕
I'm also having the same disease...I had low back pain when I was 12 ..It took around 5 yrs to get this disease diagnosed...I seeked many neurologist and orthopedics but all they became unsuccessful to point out my disease...one of the neurologists even said that I developed the pain through over thinking and negative thoughts...finally a orthopedic doctor was able to suspect the disease by studying my medical history and confirmed through bone scan...I'm very glad to know that there is a community of people having the same disease like me...
It really is nice to connect with others who share in this pain. I was diagnosed with AS back in 1991. Daily battles against pain and fatigue...I'm sure you can relate!
@@daveglassman4779 from 1991 up to now it's about 28 years old, how about your condition now ??
Please try to answer it because there are people with AS who think that they can't life long, they think they are going to die
@@aloycesapro4765, technically speaking, the disease for me has actually progressed, but I'm not completely disabled (thank God!). Everyone is different, and symptoms and severity differ from one person to the next. It's unpredictable, too. I've got a moderate level of kyphosis, and there are a LOT of things I can't do anymore, but I am still pretty ambulatory. A person just has to take it one day at a time. Keep going, keep moving forward. Joining a support group is helpful (I'm a part of one on Facebook). Talking about it IS therapeutic. Here's part of my philosophy and plan regarding AS: Gentle movement/exercise, rest, a good diet, support and faith. Hope this helps.
As someone who is newly diagnosed, it's so nice to see someone roughly my age also with it! Makes me glad that you are able to still get around, I'm 1/3 through my nursing degree, and this is giving me hope! I thought I'd have to give it all up but I'm glad that that's not the case! :)
Ah you definitely don’t have to give up your degree! Even though I didn’t know at the time it was AS I studied for my degree while I had the symptoms. Definitely try and get an occupational health assessment though, some adaptations might be helpful if you have to sit a lot! I found a standing desk really helped me at my job, which in involved writing a lot of reports on a computer. With a diagnosis you should be eligible for funding adjustments like that! Good luck with everything! 💕💕💕🤗
This is so helpful
Faith Kerlin I’m so glad that it was helpful! ♥️ It’s scary getting diagnosed but there are plenty of people who are dealing with AS and still living their lives! Good luck with everything, stay strong and enjoy dancing! 💪🏼✨ xx
I was your age when i started with what I still struggle with daily. I was told by a dr to stop dancing, stop exercising , etc. So i did, and when i was 18 (im 26 now), the drs told me that it was the worst advice i could have been given. At 13 dancing was basically my entire personality. It was my passion and i was devastated to leave. My point is yes take the drs seriously but consider what they are saying i dont know why they even suggested stop exercising because it just made everything seize up
I know this is a late comment but hopefully you will see this. Thank you very much for making this video. There really aren’t enough younger people talking about this.
No worries! I hope it was helpful! 🤗💕
I am starting my freshman year in college and I was diagnosed a year ago! It has made me have to change my plans, stay local, and not go full time. But I believe it is so important to keep ,moving forward and stay in touch with your passions!
Hughes Vernon Sorry to hear you had to change your plans. Great that you’re at college perusing your dreams though! I couldn’t agree more! Good luck with everything 🤗
Hi, I can sympathise with you and understand the challenges that AS sufferers have to face on a daily basis.
I first suffered the symptoms when I was around 10 years old and am 62 years old now, so like you presented symptoms at a young age.
Back in the 1960's AS was not even recognised so sufferers would have gone undiagnosed.
Despite this debilitating disease I have managed to live a full and active life, including a 30 year career in the armed forces. In fact, my condition wasn't correctly diagnosed until I had my discharge medical when I left the military.
My treatment towards the end of my career was physio therapy and painkillers, but the key factors were, I didn't know what my condition was and remained active despite the pain.
Even though I am much older now I still remain active and listen to my body and adjust my activities accordingly.
My condition progressively got worse as I grew older and I managed to tolerate the pain until the medication became ineffective and the side effects outwayed the benefits.
Key points are to stay positive and keep active and enjoy life as I have.
Hi Tony, thank-you so much for sharing! It’s great to hear that you had such a fulfilling and active lifestyle & were able to work in the military for so long. I completely agree that keeping active and listening to you body are key in managing AS and it’s great to hear from someone who has lived it themselves.
I think it’s so important to keep positive and try to keep moving forward, doing what you want to do in life. I’m hoping my videos inspire that in people!
Good luck with everything & thanks again for sharing! 🤗
did you had a disc herniation or hip replacement ?
Thank you for sharing this. It has cheered me up. I hope you are still doing well.
You were lucky, they don't prescribe pain killers anymore. I suffer, the chronic pain keeps me from working and doing what I want to do.
U r great...ur storey is inspiring
Hi guys, I had AS over 40 years, started in early teens, let me say it gets better and less painful as you get older. I'm pain free now. Look after yourself , keep exercising, eat well and enjoy life. It's not death sentence. I haven’t let it stop me doing anything in life. Good luck. 😊
Please all of you with AS, do the no starch diet. It absolutely works. I’ve gone from 9/10 pain to none, without meds, by identifying what causes my inflammation.
Well, tell us all that you eat instead of starchy bread, because most food contains starch.
I was diagnosed in 2014, but suffered the symptoms for approx 18 years, therefore I have fusion in the neck, back and sacroiliac joints, I am now on Humira, which made a world of difference with the pain, but the fatigue is what I now find the hardest along with the flare ups, thankyou for being open and honest, it’s a difficult disease to get people to understand how it affects you
Thanks so much for your comment. I’m sorry to hear about the fusion and the fatigue that you are experiencing. Glad that Humira is helping with the pain though. Wishing you all the best! 💕💕
Hey there, I was prescribed Enbrel for a year, and I really didn't get relief. Plus all those side effects, like cancer, really bummed me out. I have surgery in a few days, and will start Humera in 2 weeks. Does it work well?
Also good luck with your new meds! Xx
I found a huge improvement with Humira, Good luck with it, fingers crossed it all works out for you
I am on cosyntex myself and have found it great. Haven’t had a fusion since I’ve been on it. But like you, I find the fatigue the hardest to cope with. Can’t do a lot and get very lonely too because of it all.
I'm 53 & joined the AS club 5 years ago. I've been through 2 heart attacks made it through ok had my gall bladder removed precancerous and cancerous polyps removed from my large intestine and L5-S1 fusion with hardware removal . AS is the worst thing I have ever been through in my life. It's in every major joint of my body now. The will to move and walk is really getting hard. I'm doing everything I can not to be bedridden and not let this disease take my life away. The only way I get by right now is using Cymbalta to block pain in my brain and even that is getting hard to deal with now. I feel for somebody so young in your position. Good luck in dealing with this disease. PS Humira and Enbrel were a fail for me.
green dream Sorry to hear you’ve had a tough time of it. Good luck with everything! Thank you for sharing your story & experience. Wishing you all the best. 🧡
Hi! I just wanted to thank you so so much for making this video. I was diagnosed with AS about a month ago after about 2 years of being misdiagnosed, confused, and sometimes just not believed, which in turn made me wonder is my pain really that bad? Of course it is, and I'm learning how to deal with it now through injections, naproxen, and lots of exercise. It also started with back pain while trying to sleep. The tightness would get worse after sitting for a long period of time, and only be relieved through movement. As a theatre artist, I chalked up the pain to long rehearsals, teaching, and being on my feat all the time. Now, in my early 20s and graduated, I am FINALLY getting the help I need. I also only have it on one side, funnily enough. It is so refreshing to see someone who seems to be in somewhat the same lifestyle as me talking about the disease. It is scary, painful, and hard to explain, but it is good to know there are people out there lie yourself, and that you can manage your pain and maintain the life you want to live. Thanks again! Much love
Thank you for sharing your story. I have been diagnosed with AS since a month ago and I was astounded to notice how similar your case is to mine. I also have hypermobility in several joints and my affected area is the thoracic spine. I'm glad to see you're pursuing your dreams! All the best!
Natália Assis wow! thanks for watching & I’m glad it was helpful! Good luck with everything! 💕🤗✨
Glad you're sharing your story. Talking about it really DOES help. I too, have Ankylosing Spondylitis. Been dealing with this for the past 28 years. AS is a real pain in the you-know-what! Anyway, thanks again for the video here - it's nice to connect with others who understand this painful and debilitating disease.
Hello guys I am Indian and I have diagnosed with AS two months before and now I am 20 years old but fit and cured my AS 90 percent. Now I have hoping it will not happen again and I will live normal life. I am taking physiotherapy and medicine like indomethacin and sulfhasazine
God bless all people.
I have diagnosed with AS three days before. I am so so afraid now and i also don't have any idea what to do. So pls help me brother
@@ankitpandey1946 brother don't worry so much, keep calm and pray for your better health.
Bro meri halat bahut kharab thi, mai dande se chalta tha aur wheel chair pe aa gya tha.
Pehle to maine allopathy me treatment karaya aur 2-3 mahine physiotherapy karaya halka relief mila. Aur presently ayurvedic treatment le raha hu.
Dekh bhai bhagwaan ek exam lete hai.
Mujhe dard mila to 20 ki age me sarkari naukri bhi mil gyi. Isiliye be happy and motivated
Happy for u! For me last year was diagnosed. My full body stopped moving and my fiance left me, I lost my muscle mass(17kg), my savings got wasted in buying medication and paying diagnosis bills 🙂I was fired from job I become totally dependent on my parents 🙂but u know still I am crying just crying imaging what the hell happened to me
How about now?
Was diagnosed 4 years ago and decided to go down the path of Ayurvedic meds and using food as medicine. Went 90% vegan, regular exercise and as long as you have a low body fat count you will be able to live a normal life
Thanks for taking the time to make this. It's super helpful, relatable and fun to watch! Keep it up!
Just got diagnosed today. I’m 34. Answers a lot of questions from the past decade
Mam I'm a As patient , can I share my problem to reduce pain, if any treatment is available there
I was on pain meds for 10 years, so i was numb, but when I quit them all, I started having back pain that wouldn't stop. Couldn't sleep. I got diagnosed with ankylosing spondylitis on my birthday this year, so I am new to all of this.
Just been diagnosed with this I've had back pain since I was 14 , I am nearly 30 thank you for making this i also have just been told about it been offered medication and left to my own devices X
I am 19 and I just got diagnosed with AS after years of pain and being told it's all in my head. It's scary being young and not really knowing the future. It is so relieving to see someone in a similar age with similar life goals
Hlo
I am feeling same
Just found your video. Hello! My AS started when I was 15 and started as lower back pain, hip pain, numbness, insomnia but I wasn't diagnosed for 16 years (was diagnosed only in March this year). Due to this it has progressed quite a lot and my mobility has worsened a lot. For the last 6 years I have got worse and worse and it is hard being 31 and friends and family not understanding as I am young. I continually down play it to everyone especially since I have a 3 1/2 year old daughter. I like you felt embarrassed talking about It, felt like I making it all up and because it has took so long that I would never find out what is going on. I also have joint hypermobility too and normal bloods.
I've just started cimzia to try and slow the progression as well as arcoxia and tramadol. Kudos to you. I've just come back from being in Spain for 2 weeks and not sure I could do further travel. Coming back has thrown me into a huge flare.
I hope you are well and have a pain free day.
l cub Thanks so much for sharing your story. I’m glad you’ve finally got a diagnosis and hope that the medication starts to help your symptoms more! It took a while for me before I really noticed the effects so don’t lose hope. Good luck getting over your current flare up & with your daughter!
This is brilliant, so glad I found you. I have AS too, quite severe, just thought I’d type it in the UA-cam search to see if anyone else has it and I found you! I’ve subscribed and look forward to making my way through the rest of your videos. Thankyou for putting this info on here to help others suffering so we don’t feel so alone.
Aw I’m so glad you liked it! Thank you so much! ♥️ xxx
Hi Rachel what are you using to manage the AS ?
Thank you so much for this video! Loved it! I'm 26 and was diagnosed 2 months back. Was 23 when the first symptom (hip stiffness) appeared. I'm HLA B27 +ve & have inflammation in my left SI joint. Accepting and getting over the shock of the initial diagnosis was one of the toughest things I ever had to do. It's comforting to know that I'm not alone in this. :)
you are so so welcome! ♥️♥️ good luck with everything! Xxx
gluten caused my A S now i control it 100% by grain free.
Thank you for posting! I suspect I have AS, so It's nice to hear other people's experience with it. Happy trails!
Troys World no problem! Good luck finding the cause / getting a diagnosis!
I have hyper mobility which I’ve knows about for years and in jan, I was diagnosed with AS literally such a similar story to you but had to go private just to get someone to listen to me! I had an MRI and my whole spine neck and hip joints. Didn’t test positive for the common gene either! Just happy to have answers after years of trying to get them:)
Becky Louise aw crazy you have such a similar story to me!! Sorry to hear you had to go private to get listened too but so glad you’ve finally got answers! Sending so much love 💖💖💖 xx
Thanks for sharing your AS story!
I've been diagnosed with AS for 15 years now. I'm 39. Have flare-ups a few times a year. But, recently I've begun to suspect my tummy troubles may be AS in origin. I was on the NASS site looking up biologics and linked to a youtube video on it. I then saw your video, and it's nice to just hear about someone else who's also going through it. So, thanks for sharing!
I am over three decades living with AS, ever since I was in my late teens. I was undiagnosed for about half of that time, and it was an eye doctor that diagnosed me. I was prescribed indocin, which helped but I have not taken anything for years. I get a bad flare up once every few months, as is the case now, but I just deal with the pain in my SI joint by stretching, exercising, crying, and if really severe than I take a few ibuprofen.
I know that AS affects people differently, and I did not see any mention of eyes. Please please please, if anyone with AS ever feels that your eyes are slightly off or sensitive, drop everything and get yourself to an ophthalmologist immediately. You may be in the beginning stages of an iritis / uveitis episode, which is the inflammation of the iris. To put it plainly, I would rather have every tooth ripped from my mouth using rusty pliers and no Novocain than deal with Uveitis again. It comes on very quickly, and you can go from a normal day to suffering the worst pain you will ever experience in a matter of hours. I can take body pain for days on end and just deal with it, but Uveitis gave me a whole new appreciation for severe stabbing pain. I now know what to look for and am ready for it by always having the proper eye drops nearby. The drop to knock this out is prednisolone, but you will need another drop that dilates the eye as well.
I hope that my terrible experience will help someone else to avoid the pain. The drop will help almost immediately, although prepare yourself for no contact lenses and a dilated eye for a month or two afterwards.
Interesting video, I'm going through the process of diagnosis but suspect AS. Sounds like you've been incredibly brave and stoic dealing with the pain of the condition.
Simon Hoban good luck finding the cause & getting a diagnosis! Thank you, that’s kind of you to say so 🤗
Thank you for this video honey. I’ve just been diagnosed today. I’ve got crohns. Your links are very helpful x
Aw sorry to hear that! I’m so glad I could help a little! Good luck with everything! Xx
The biggest thing as Someone who has AS and searches the internet for videos on it.. I look for perspectives of the disease from the people who have it, not all of the dated Doctors videos from 7 years ago, etc. I want to get confirmation and reaffirmation that the symptoms I fee everyday are not in my head, and make sense when you explain them to someone who knows what AS is! My biggest issue is being believed by a bunch of non-believers who think I’m faking it. My doctor won’t even refer to me to a rheumatologist because in California, our area of 750k citizens, has 2 RA doctors serving over 200 new patients. They said Covid is more important than me getting a diagnosis, and it’s been over a year I’ve been trying. Meanwhile I’ve lost 80lbs, I’m 99% sure I have AS, I already was diagnosed with EoE but they don’t know what caused it... duh, my AS inflammation! Oh yeah and the Neuropathy pain isn’t talked about enough. Years of inflammation killed my feet and hands. As a guitarist, my job is a struggle everyday now. But I do it anyway! A.S. Will NOT take my music away from me. I don’t care how painful it is.
Great info. I was diagnosed with AS this past year but now that I understand it better, I know that I had symptoms in my 20’s. In my 20’s, I, an American, traveled all over the world. I had times where I hurt badly as by now I seem to have nearly all the symptoms. I still traveled and saw the world.....something like 25 of them and actually I lived in the Philippines for 5 years, and I wouldn’t change taking any chances because of the AS label. You go, girl!
Thank you so much for making this video! I'm about your age and my mum has AS and it's possible I do as well but I've been hesitant to seek out getting tested for it or not because I'm quite scared of the idea of having it. So it's inspiring seeing someone like me who has it and is coping with it, sounds like you've been so strong to be diagnosed at such a young age and still pursue your life the way you want to while managing your condition :)
I am from India, I have been diagnosed with AS since 10 yrs back, now I am 32. I am feel courageous having seen you that there are any one to advocating for AS. Thanks
I received my diagnose yesterday and was worried because I am about to move to a new country in a month. Glad to know that you are coping with it while on the road. I am not sure how I will keep up changing my life completely like this but you gotta do what you gotta do right heheh
Definitely! It can be tricky getting organised at points but it is 100% doable - just make sure you put yourself first and care for your back as much as possible. Good luck & I hope you have the best time travelling! 🤗♥️
I had very hard back pain since the age of 10. First, the doctor told me that it was because I was growing up. I did physiotherapy and it got worse. Years after they told me that it was in my head and long story short, I was diagnosed with AS when I was 22! So my sacroiliac joints looks pretty bad now... I have tried all the anti-inflammatory medicine possible and nothing worked for me. I have had anti-TNF (Sympony) which worked in the beginning and I ended up having antibody to the medicine. I am trying another one (Humira) now which is not working... So now I am in a lot of pain and I am so glad that I found someone who openly talks about it on youtube. I also felt so lost with the diagnose in the beginning and I am still a bit since the medication is not doing much anymore... Thank you for this video, it is good to know that we are not alone even if it is sad to see that others are also struggling with AS. I wish you all the best to all of you in the comment section!
Thank you so much for sharing this video and providing all those helpful links as well!! I'm 32 years old with AS and my neck is fused. I'm on Humira now but took about 20 years to get diagnosed so my SI joints have so much damage too. Talking about it and raising awareness is key so people can get on treatment sooner to prevent fusion!
I also had pain since I was mid college (about 21). I noticed the effects heavily as I could never get a full night of sleep. I would wake up in the middle of the night and just could not stay lying down. I started getting into the habit of placing 3 pillows behind my back (in order to give it some sort of curvature) and that helps sometimes. I got diagnosed this year but I knew all along something was wrong (even though everything was normal until the MRI). To diagnose it they used the MRI which showed sacroileitis (both sides) and a specific blood test called HLA-27 which in some cases of AS 6can be positive (as mine was). To relieve the pain ibuprofen was my way of getting a few more hours of sleep but regarding NSAIDS( ibuprofen, naproxen, diclofenac) I would be cautious not to take it without food as it can lead to stomach issues (omeprazole helps to reduce the risks). You can also get injections in the spine which help temporarily. Also has anybody noticed that when we get a cold or something that leaves us feeling drained, the pain is much lesser without medication? To me at least it does.
I was diagnosed when I was 38 and have had the symptoms since early 20s. I'm now 56 and yes living with AS sucks!
It's cost me 2 marriages maybe a 3rd. I'm on Simponi TNF blocker black box injectable drug.
A.S. can cause other medical problems too, I've had the eye iritis, gerd, leaky gut, diabetic type 2, high cholesterol, high blood pressure, additional arthritis in my shoulders, hips and groin area.To make matters worse I only have 1 kidney the other one didn't fully develop.
My brother in law thinks I'm a lazy SOB, kinda hurts to hear from your nephew that you like to lounge.
I wish parents wouldn't talk about family members in front of their children, yes AS sucks!
Hi! I was diagnosed in 2011, but the signs of it appeared in 2008. 10 years have passed since that moment. What really helps me to live fully: 1) non-steroidal anti-inflammatory drugs (Arcoxia), 2) physical activity (fitness, cycling, boxing, morning excercises and excercises during the daytime, swimming, kinesitherapy). Of course excercise intensity depends on your current health status, cause in case of exacebration you can hardly be active and can even worsen the situation. Thus, it is really important to discuss your physical excercise programme with a doctor and also find a qualified coach, 3) healthy diet - it's really individually, because in my situation, the cause of exacebration was I ate too much pastry, salami and fast food. It's better to exclude those foods from your diet, 4) Fasting - I usually do it 1 time a month, 7 days a time. No food during the fasting. I do it under the remote control of a physician. It really works, cause during the fasting it is possible not to take Arcoxia, because you feel well. But after the fasting is over, I can feel pain again, but it's not so painful as it was. It also helps to get out from desease aggravation. I have it every spring, and it will be enough to fast 2 times (7 days per time), with one-week interval. Good luck! And, please, do not try fasting on your own.
Bronislav Fein thank you for sharing! It’s so interesting to learn what helps others!
You are welcome)
Bronislav Fein i wanted to know how old are you? And do you take Arcoxia every day or just when you need it? Thanks
That is great. How do you find time for all that. I get up at 5am. Try to get through my work day. Get off at 4 . I am exhausted well before I leave work. Then I go home and get my boys homework, dinner, showers. Let me know your secret. Because the way I am doing it I have no time. 🙄
hey girly! i am in canada and have had ankylosing spondylitis for 8 years! came by to check out your channel
Hey! Thanks! 🤗💕
Thanks, I am also an AS patient from India. We can discuss our problem raises from this disses to reduce the pain symptoms also. Can we share each other about this problem and I hope we get any help as we r from different countries. There may be different treatment also in our country
I had bad symptoms starting at 21 years old. Didnt get diagnosed until 31 years old when it fully attacked my si joints. Chronic back pain at a young age and during sleep is not normal people need to go to a doctor.
Hi, sorry to hear about your symptoms. Glad you’ve finally got a diagnosis. I completely agree, I think it’s too easy to normalise chronic pain & more should be done to raise awareness of AS in order to help others 🧡 xx
Yea, I am thinking this is what I have. I starting have pain in the SI joint in early 20s. The doctors said it was SI disorder at the time. Now fast forward to now 42 year old. I have been suffering with pain on and off. It became chronic 4 years ago. Onto many doctors not finding the problem. Many misdiagnosis. Now they want to test to see if I have the gene hla b27. That's when I learned of anyklosing spondylitis. I have many of the symptoms. The rhuemtology test came back normal as she said in the video. They did an MRI without contrast and said that was normal as well. They want to do another one with contrast to see if there is inflammation. Ugg, I am tired of going through tests. Last year I was diagnosed with an autoimmune disorder alopecia areata which caused my hair to fall out. They say if you have one autoimmune disease you might have another. I am so tired of being in chronic pain everyday, I wish they could just cure it and be done with it.
Me also 😟
@@ThisIzzTheLife me also late si joints fused totally 😥
@@rachaelpeterson1767 wtf my hair too they're starting to fall from the back right side of my head but I'm pretty sure its cz of vitamin D and B12 deficiency . Btw I'm 20 y/o and suffering Frm AS
I was just recently diagnosed a few months back. I felt scared too and kind of do still but less. My inflammation keeps rising and I’m medicated with a couple different pills already. My doctor told me that I had to be put on Humira and that’s what has me a little frightened at the moment. It makes me feel better knowing that I’m not the only one. I guess you know but at the same time feel so alone. Thank you for telling us your journey with this disease, it really helped a lot.
I was fine one day and never had any joint issues. One day I woke up and I couldn't get out of bed because my hips wouldn't move and the bottom of my heels hurt. The pain in walking was so bad that I couldn't even shop for groceries anymore. I went to a chiropractor and physical therapist but the pain wouldn't heal. My MRI showed sacrolitis and osteitis pubis, which would explain why the pain all around my hips on every side. I finally told my regular doctor that I injured myself and I don't know how I did that and it's been a year and I'm not healing. She then took a blood test and I tested positive for inflammation and also rheumatoid factor. She sent me to the rheumatologist where he basically walked into the room and said that I have anklyosing spondylitis. So far I've had this for two years, no fusing yet, and prednisone is my best friend. I'm on biologics and it does help.
Hi Amanda, thank you so much for sharing your experience. I’m so glad you find biologics help you and that you’re doing well overall. Wishing you all the best xxx
Never let what other people think effect your outcome. I've had to use a cane since i was 45 because of the pain and stability. I hate it but I know some people who rather not go out in public because they are embarrassed being younger having to use an old person mobility devise. But that's the worst thing to do. You need to get out and live your life.
I was 26 years old. I felt alone. Because when I was diagnosed there was very little known about it. Because I am 45 years old now. But I didn't allow it to stop me.
Can u help me Paul
Thanks so much for this! I'm waiting for a diagnosis but I'm 95% sure I do have AS. Seeing your video has made me feel so much better about the diagnosis. Especially because your life kind of mirrors mine... I left home in March 2018 to move to Vietnam and I've been living in asia ever since so I was kind of worried about how I was gonna keep up this kind of lifestyle with AS but seems like it's totally possible. I'm going to watch more of your videos now :D
I want to thank you for doing this video. As a long time sufferer of AS I need to correct you on your comment about bone fusion. I was diagnosed with AS in 1997 since than went through different medications most of them useless 2012 I was on Humera .what I want to say is after everything in 2013 my neck and spine was fused there is no good treatment but exercise ,diet and emotional support from family and friends.
i recently been diagnosed officially, been having weird sternum pains and it always pops for so long
I had my appointment with rheumatology around a week ago. They have pretty much told me that I have AS, pending the bloodwork comes back supporting the diagnosis, but my doctor is almost sure at this point that this is what I have. Both of my sacroiliac joints are showing the signs of AS, so much so that my doctor said it was "extremely concerning for a 25 year old to have hips that look like that". Not showing fusions in any other areas of my body, but I am dealing with pretty painful swelling in my neck, back, elbows, and my knees.
Luckily I've seen this coming for a few years now, my father was diagnosed with AS when I was a baby, so I've grown up my entire life seeing how the disease affects the human body. Unfortunately, my father has such a severe case that it has caused almost complete spinal fusion, and he has also had a knee and hip replacement due to the progression of the disease. But despite all of this, he is still as active as he can be and lives a fairly normal life. The thing that tipped me off is that the pain started in my knees, which is also where my father's started before he was diagnosed. I feel your pain, as I was also a runner prior to this, and I very much miss it now (lol).
For the moment, they have me on a daily dose of Celebrex (celecoxib) and after my bloodwork comes back, we'll decide if we want to keep me on that or potentially move me to a biologic like Cimzia or Humira. I'm also on Flexeril and Hydrocodone 10mg to deal with sudden flare-ups of pain, which is often at the moment as I live in the southern US and it is currently hurricane season.
Hi, I’m so sorry to hear about your symptoms and experience so far. I really hope that you can find if it is AS soon and find a medication that works for you. I hope that your dad is doing okay too. Always here if you need to chat 💕🤗
That's what would help me , pain killers. They won't prescribe them anymore here in Minnesota.
Thank you so much for this I got diagnosed with this 4 months ago I also have another autoimmune disease called pernicious anemia so it’s been really difficult
Hi Emily I’m so sorry to hear that. I hope that you’re doing okay. Lots of love 💕💕
Hey, thanks for this video, im always looking for women who have our condition, when I was diagnosed 10+ years ago it was really uncommon for women, back then it took me 2 years from the start to be diagnosed.
I find it interesting you are hypomobile, as am I.
I still remember the early days - it can be a bit scary especially if no one else in your family is experiencing symptoms. Im the only one in my family. The important thing is to take it seriously and use all the resources you can as early on as possible. Its really easy to brush things off while you are younger and things "aren't so bad" but the longer you can keep the condition progressing the better life you will have.
Thanks for sharing, wishing you the best.
Thanks so much for this! It's great to meet other women with the disease and hear some of your advice! I think you're right that its important to start using resources as early as possible and I will definitely carry on making an effort to do so! Thanks again and take care. :)
Hlo everyone ....I have recently been diagnosed with this problem .. M so depressed don't know what to do and how m gna manage this disease...Please guide me with ur experiences. Thanks
nanu sharma Hi Nanu, I’m sorry to hear that you’re finding it hard. If you have an AS Society available where you are, then personally I found them to be a really great source of support. I think in some respects it’s normal to feel sad and afraid after a diagnosis so you’re not alone in that. I know that I certainly did. It’s it’s really severe then maybe consider speaking to a professional about how you’re feeling.
I just want to reassure you that you are not alone and I certainly felt that things got better as I realised I could still achieve what I wanted! I hope that helps. Good luck & stay strong! Izzy x
I am currently residing in Melbourne on student visa and treatment here is too expensive .... .As u are also suffering from same disease can u please tell whats ur routine
Thanks
nanu sharma bro... only yoga and Ayurvedic medicines can cure this problem... i am suffering from last 2 yrs but yoga helped me alott... someone who can't even walk properly is now playing badminton on regular basis... so don't get late... start practicing yoga and remember, don't push yourself too much while practicing... yoga will take some time but it will definitely improve your mobility... take care😊
It started with me when I was in first grade in the 70s but back then. The Drs did not know what it was I have never met anyone with it except for lead guitarist of motley crew Mick mars
Diagnosed with this today..I'm 18 just trying to get out on my own and I'm honestly terrified..though I also have a ruptured disk so I will have to have surgery as well...luckily we caught it I guess earlyish cause I've only been dealing with this for 8 months..can't sleep..can't work..still somehow getting through college..hopefully it will all get kind of better
Thanks for doing this video! Until recently/youtubers, its been so difficult to connect with others on this. I was diagnosed at 20 years old. Doctors missed the diagnosis for about 2 years before I demanded to see a rheumatologist after learning my grandmother has this disease and putting two + two together. Doctors would say I was "flexible" therefore everything was structurally fine even though I was getting lightening sharp pain in my lower back/hips that would zap me at random times so strongly I saw black, and I would also get "locked up" with inflammation and have to limp around at 20 years old! I'm now 32. I'd say until about 3/4 years ago it was on/off with pain + symptoms but since then its been a constant low-grade pain and stiffness. I've given up on doctors because all they offer is biologics which have their own set of symptoms and repercussions, opting to try out nutrition-based remedies and exercise even when in pain, biking helps! But obviously there are times when its been so bad I'm just home-bound. I tried LDN last year, pain-free for about 9 months and was even able to start running on the treadmill but then it stopped working. It affects my life completely, but I never give in totally to the identity of it because I do believe the mind and spirit can affect health outcomes. Craniosacral therapy and hatha yoga (alignment-based, not fast flow) has been essential to my healing!
I too have being on LDN for the longest time and for some reason started having painful flare ups one after the other. So I quit the LDN.
I appreciate this video so much! I was diagnosed just under a week ago. I've had small symptoms since about 14, but they symptoms didn't really pick up until I turned 17. It started as a snapping in my hip and I thought I had just injured myself while working out. but sure enough it never really went away, just came and went in phases. I am now 21, and after the last 4 years of searching for answers, my doctor finally ordered a bone scan where we found I had AS. For me though it is the worst on my left side, affecting my SI joints, left knee, feet, upper chest where my ribs connect, and the C7T1 junction. The only reason I found out so early is that my mother has AS and once I started experiencing symptoms, pushed to get answers and be checked. 4 years is a long time, but there are so many who wait so much longer! my mother took over a decade to get a diagnosis
thank you so much this has helped as I just got diagnosed a couple days ago, I am only 20
thank you so much for sharing your story.i was diagnosed by AS last month and i was really dipresed about this . your story really helped me. pleas share the workout too.
Hi Izzy
Thanks for sharing your story. Just seen your video. I was diagnosed with AS about 2 years ago. To be honest I've been trying to ignore it but it's just hit me really badly this week. Can barely walk. What medication are you currently taking? I've got to start taking action now. It's good to know that you can manage the symptoms without it ruining your life.
Kind regards
Jamie
Hi Jamie, thanks so much for your message. Right now I am on a medication called Piroxicam although prior to that I was taking Arcoxia.
Here’s a video I filmed on my experience of Arcoxia where I explain how it works - ua-cam.com/video/H0iNYFg39_I/v-deo.html
..and a more recent update where I mention my experience of Piroxicam so far - ua-cam.com/video/PR0Zo6SlZYk/v-deo.html
So sorry to hear you’re struggling this week. Make sure you take time for yourself ♥️ sending lots of love and hope that things improve soon. Izzy xxx
I was recently diagnosed with AS and the back pain is phenomenal. (I'm only 15) there's no damage. But I'm waiting to be able to do physical therapy. But I was wondering if u had any notes about it
This was a informative video :) Thank you, I have been taking note of my symptoms to take to the rheumatologist when they refer me, I just need to do some blood tests first. I wish you well
Siham Noor glad you found it helpful!! Good luck 🤗
This Izz The Life Thank you 😊
Thank you for sharing .I was diagnosed today,and I am 25 years old .Didn’t know a lot about it.English is not my mother tongue,could you give me more information about the disease and recovery exercise you do to keep the spine healthy?
Great info, thanks :). I am battling AS too!
Thank you for the info about women with AS. I don't have typical symptoms, but they are similar to yours.
Thank you so much for sharing! I have AS too.
Elhanan Gutorov no worries! Hope it was helpful! Good luck with your AS!
It takes approximately 8yrs to get a diagnosis and the symptoms are allllll over the map!! So all you had was back pain?
And i am on the AS lifeclub 24 years now...😊
What do you use to manage it ? Humira ?
I have this too. Hi from NC, USA! 😊
So glad i found this. I have been for a few blood tests, i had test done for rhumatoid arthiritis it came back false negative, my test for imflammation came back positive, my vitamin D came back low. I had xrays in my back/hip they came back as nothing showing, my neck and back came back saying i have arthitis. Its so confusing as my worst pain comes from my back and hip, although my full body aches, i wake up 2-3 times a night with my forearms, elbow and shoulders aching, my hands ache, wrist, ankles, hip and lower back, And my groin. Also have plantar fascitits in both feet. I have been referred to a rhumatalogist but going to be a long wait. Dont know if i can wait months i have been trying to get this sorted for years this is them just doing these tests. I am so down about my day to day life, my pain on a good day is a 7 out of 10 on a bad day 10. So tired and fed up. Take meloxicam and dihydrcodiene, vitamin d, and onzeprole. Is AS classed as a disability in the UK?
I think I have this disease and I'm certain my dad has it, but because of my age, my doctor just thinks this is growing pain or I'm faking it due to my sister's chronic lying.😭
Thanks for this! Recently diagnosed at 34, but I've had hip pain for as long as I remember.. then it turned into all over random joint swelling (fingers, wrists, ankles, toes). Drs never listened, always said it was growing pains or sciatica.. all my blood work came back ok but I have tested posi for the AS gene itself. MRIs and xray are also pretty normal, but the dr did say that my right sacroiliac joint appears loose and a bit more separated than the left.. just waiting on the referral to a rheumatologist now. I cant wait to be treated and feel better... I cant sit, stand or walk for more than a few minutes.. use a cane and have even resigned from my job. Just want to see the light at the end of this tunnel, if there is one?
Starts at 3:32 you are welcome
Hi. I have also ankylosing spondylitis. I was nit taking medicie because I know the side effects. I tried the method of dark-field microskopy and It is a method the can find many illness in your blood which is not possible to find with blood tests. My procedure with this illness is I changed my nutrition to vegan and take natural madicine they gave me like basic powder because of my acidose they found and zeolith for the heavy metals in my blood and some natural vitamin B complex. If you could, I would recommend you also to try the dark-field microscopy. It is a few weeks ago I have done it and that I take take natural medicine and I have not so much pain anymore as before.
I hope I could help you and wish you to stay healthy🙂!
Agathe Sangha thanks for sharing! 🤗 good luck with everything xx
I Hope you will see this, i was diagnosted 1 week ago (I am 24) and I am totally afraid.. your Video makes me smile.. Thank you so much
I imagine Maria, this is for sure not easy. I started heavy symptoms in 2002 and was only diagnosed 2 months ago as I had a severe uveitis in November that made me searching... I sometimes feel not being diagnosed for 17 years has been in some ways a blessing. I wish that you reply well to Ibuprofen or one of those, as I react very well and it helps me a lot. I also started wearing shoe insoles that helped a lot with pelvic pain. But I believe most important is that you stay positive and optimistic. Not knowing what caused me in 17 years thousands of painful days gave me no choice. I lived a very intense full life so far. I kept doing all sports I wanted when possible, traveled extensively and was even heavy into clubbing for about 10 years. Don't let them get you was always my Motto... Eat conscious and healthy. Live life Maria!
Michael P Thank you so much, no Ibuprofen or Arcoxia dont help me anymore, I need Biologika (Simponi) I feel better now but not good. I do a lot of Sport and eat healthy and I hope i will feel better soon... Thank you !
@@marialolou6100 I am sorry to hear that Ibuprofen alone doesn't help anymore. Let me know more please about your experience with Biologika. I only learnt about this 6 weeks ago when i learnt officially I have AS, after hearing first time about it a month earlier only. So i am concerned of side effects of the Biologic treatments and any feedback from users is appreciated as I might also at some point have to go that way. My main affected area was the hip and center back, but after the eye, it now really bothers my shoulder/ neck area. What is your experience? If you prefer, email me on michaelisairborne@gmail.com . If you are part of a community somewhere else, let me know please as I am as I said very new to this, although I have it for 17 years.
Michael P my english is not so good. But I Hope you will understand it.😀 Biologika are my best Friends now. I can work, sleep, go out and have fun without Pain. Sometime it hurts but I feel really better. I also was afraid because of the side effects but I dont have any of them. Two days After I get the Injection I feel really tired and like a cold, but Then the Pain goes away and I feel better. I get the injection every month, 4 days before the injection I feel again a Lots of pain and I take Arcoxia 120mg. But I really have a better Live now. Hope you are good !
do u guys have pain on chest and lack of breath (specially at night)?
I had pain in my back for 12 years before I was diagnosed in
2012 when I was 36. I was diagnosed in the March and in April my sister gave birth to a still born baby. I really don't know how we got through it as a family. I just pray that my niece and nephew won't get it x
Aw I’m so sorry to hear that you’ve had such a hard time as a family. I hope you’re all doing okay and I hope they don’t too! Sending lots of love xx
I have AS that was diagnosed around September 2017 too! Omg I'm so excited to find your channel!!
Aw I’m so glad!! 🤗💕💕
Can you talk about what exactly got you diagnosed? What was your mri like and labs if you don’t mind. Thanks for sharing!
John S thanks for asking! I can definitely do a video on that. Bear with and I will try and get something on in the next week or so!
This Izz The Life
Omg thank you! I’m a nurse in the US and I know I have all the symptoms, high cpr, sed rate, anemia of unknown cause, chronic vit d deficiency even with mega dose. I have psoriasis and psoriatic arthritis and my hips, SI and bad are rapidly degenerating. I also had a lot of fertility issues but have one little boy now.
I used to be so active and was a diver and loved traveling so I loooove what you are doing. It is hard to not be able to do what I used too. Thank you for the making this VLOG it can be so depressing and this is so amazing and hopeful for people like us. Thank you❤️
John S aw that sucks! I really hope you find the cause and your symptoms improve! I think the MRI and HLA-B27 test were the 2 most definitive factors in my diagnosis as my CRP came back within normal limits & at that point I hadn’t experienced any additional complications! But I will deffo do a video and discuss in more detail. So glad that you found my video hopeful as that’s exactly what I want to inspire and show people! Thank you 💖
New video now on about the specifics of my diagnosis! Hope it’s helpful! 🤗
If it helps. My MRI showed SI inflammation and t4-t5 degen. Crp and ESR negative. Some people may have a positive HLA-27 gene.
What about AIP PROTOCOL IN THIS ILNESS. GOOD OR NOT?
IS THERE SOMEBODY WHICH IS NOT ON BIOLOGICAL TREATMENT. thanks!
I understand you because i have it Too , ^^'
Hey! fancy meeting you here :')
Hahah , Hi are here Too ;)
i have it too. 10 years now.
I'm having a flare right now hence why I'm watching this . I noticed a comment that someone takes arcoxia also known as etoricoxib available in 30, 60, 90, 120mg. I'm usually take 90s cos I don't always take them only when the pain starts but sometimes like now it gets ahead of me . So I take 120 but you can only take these for 3 days as it can cause stomach ulsers. With the etoricoxib you have to take emeprazole which help the stomach deal with these strong anti inflammatorys hope this helps .
Alan Hatch good luck with your flare up! Hope you feel better soon!
Hello, thanks alot for helping
Are you on Biological treatment ?
Hope all is well. I was diagnosed around 2017 same time..From here in dublin,hope you are pain free and all is good. How are you getting on with it...
Like biologics that i am getting right now
How are you doing now Dear?? I also diagnosed with it in December 2020 😭😭 rheumatologist suggested me Humira 😩 i am so scared to using Biologics 😭😩😫😖 but now my condition getting worse day by day…
Could you please let us know what helped you?
IAM from INDIA suffering the same
I just found out I was born with it because I collapsed and went to the hospital
Hi, I was wondering. You are on treatment with antiinflamatory/pain meds, but are you taking immunosuppresors too?
Juan Le Garcon Hi, no although I have been offered immuno-suppressors, I currently just take the anti inflammatory medication. I actually talk about this a bit in my most recent video. Hope that helps! Xx
I too have AS. Thank you for sharing.
Thank you for much for sharing this ❤
I'm 30 years old with AS
Get a job with good medical insurance and start using Humira. I was diagnosed in 2005 and was becoming disabled fast. Started Humira in 2006 and has improved my symptoms by 90%! There are other health risks and everyone is different, but my daily life has improved greatly from Humira. Without it I would be in a living hell.
Thank you for making this :-)
Thank you so much for sharing :-)
Andrew Sambrooks no problem! Hope it was helpful!
I have too HLAB-27 positive /AS with recurrent Uvetitis right eye from past 10years and chronic pain...fed up 😭😭
does AS cause headache low fever nd fatigue???
I have a question. Has anyone dx with this also dx with adult scoliosis? Bc i have all the symptoms of this . but havnt seen if there are any info on as and adult scoliosis