At 28, from Pakistan, I've battled this condition since age 10, losing 18 precious years. Initially dismissed as leg pain, it worsened, stumping doctors due to a lack of awareness about HLA B27/AS. Misguided painkiller prescriptions led to digestive issues, forcing me into two years of bedridden agony and halting my education. After three years of futile treatments, I found relief in a more advanced city, where a renowned rheumatologist diagnosed AS and recommended surgery as the sole remedy. Even at this moment, I find it challenging to lie down fully, as my posture remains constantly bent. Sitting on the floor or walking for more than 10 minutes leaves me breathless, and I struggle to bend or lift my legs.
People might also want to check out the physical therapists channel "Bob and Brad" the video is called Ankylosis Spondylitis Self-Treatment . One of the PT's has AS. He talks about this in several videos and how he treats himself.
Just a relief to see a guy around my age with the same condition. I’m 20 years deep with this, and honestly I deal with this in typical male fashion (ignore it and carry on with life) now that I’m 38, it’s becoming apparent that daily exercise is going to be required in order to maintain a quality of life. Thanks for the video, I’ll be sure to check out the rest of your videos, all the best from Scotland
your points on the impact of nutrition is so so warranted. had similar experience in that physicians didnt recognize value of nutritional changes, even after i experienced impactful lasting improvements. for me the most difficult thing has been trying to find a manageable balance between doing enough to stay fit, while being realistic about the limitations and importance of walking the razors edge of "just enough". it can be wildly frustrating for somebody who is used to being very active to accept that things must be experienced at a lower boil. wishing all those who suffer from AS strength and resilience in managing the disease, while continuing to live a full life and have energy to bring their focus elsewhere if possible. now, 60 yeras of age, ive suffered with the disease since my early 20s, and have managed the condition without meds so i feel very very fortunate. BUT, i was not properly diagnosed until i was 50. had i known earlier, i would have taken actions to be more fully educated and aware of the dynamics and value of cautiousness in my athletic endeavors, rather than pushing myself hard that put more wear and tear on my joints than would be ideal, and have come home to roost in my 4th quarter of life.
Keep moving don’t overload or tomorrow will cost. 52 here since childhood but ok. Lost my job as an electrician at 40 for cervical spine problems. Sleeping becomes impossible sometimes feels like rigor mortise setting in so I move. Great work spreading awareness;)
I was diagnosed at the beginning of the pandemic. The rheumatologist told me i had it and told me to take prednisone. I looked it up and it didn't sound like me. Fatigue was absolutely horrible. I was bedridden for months and would yell because of the cramping that felt like is was pulling my muscle out of the socket. So they started looking for other things. One day i had an ad come up for AS and I went down a rabbit hole. I realized that every single thing I have is found with AS. Teaching regarding a new disease is essential. Thank you for doing this.
I’m 62 and never knew I had AS. I found out because my older brother got diagnosed, so I got tested. I’m a lifetime martial artist with 53 years of training and 40 years of teaching. I looked at my growing aches and pains and tightness as a part of my decades in the martial arts and in weight training. But these past four years got more and more painful. I’m grateful to finally know why. I jumped on a plant based diet and herbs and supplements and lowered my inflammatory markers tremendously. I’m learning more each day, and I’m glad to have found your channel.
I'm B27 positive and had unusal symptoms all my life, I've had an inflamed neck and eyes all my life and now get inflamed middle back intermittently at night, so weird but not full blown AS, I've been gyming for 20 years, my go to is heavy decline bench, over 200lb to stretch myself out, also heavy close grip pull down to stretch myself out, heavy row machine but with chest support so no pressure to lower back, all this helps with going deep into my back to make sure those facet joints are moving and my nerves are stretched... Keep posting and giving tips for AS sufferers, youll get a large following
Changing my diet to AIP made a huge difference. It is difficult to stick to it though and I feel the difference. The other thing is yoga and moving - but not overdoing it. Weight gain is a major issue - not sure how I can address it (came though menopause and pandemic). I am too tired for more exercise…
Cant do the diet its sould destroying but have inflammatory bowel because of ankylosing spondylitis so need to do something but will i be attacked anyway ..
Best advise I got - Motion is lotion. For me it's a trade off due to spinal and neck fusions, so the impact just from walking causes neck pain at the base of my skull but I still feel much less pain everywhere else from a half hour walk during my lunch break.
Yes! Same here. I walk my son to school and the days i dont I am so much stiffer! My dr did say movement is your best friend thats the best advice i got but she never asks if i actually move
Can someone test positive for the HLA-B27 and not have this? I tested positive for the gene and was sent to a rheumatologist because I was having shoulder neck and spine problems but my rheumatologist doesn’t seem to think that I have this because my blood work other than the gene being positive was normal My inflammatory markers were normal, but I was diagnosed with degenerative disc disease and C6 in C7. With cervical osteoarthritis, also osteoarthritis in the AC joint with a slight curvature of the spine. Also, I have spondylosis but rheumatologist seems to think it’s from wear and tear so I’m confused I do not understand why I tested positive for the gene and have all of these issues including fatigue pain at night in my thoracic back, especially when I take deep breaths. I also have arthritis in my thoracic spine too and I’m thinking is all of this due to me having AS or is it wear and tear and then there’s the gene which was positive but yet he doesn’t seem to think that I have this I don’t want to be overdiagnosed, but I certainly don’t want to be underdiagnosed, he did a full body x-ray of my spine and said that my SI joints looked normal in the spaces in my back were wide-open and clear other than some bone spurs which I had a few and those other issues I mentioned, so my question is where do I go from here? Do I take his word or do I get a second opinion? I don’t know if someone can test positive for this gene and not have it. I don’t understand what kind of weight it carries, any feedback would be helpful.
5:11 Please go to someone else. Yes, you can HLA-B27 and not have it. You saw changes on your X-Ray. You have symptoms. Everyone is different in how they present. My cervical spine was shot long before my SI joint was affected, for example. My first symptom was shoulder pain.
Hey bro, I appreciate the video and your intentions with the channel. I’m 27 with AS going on 8 years, I’m huge into fitness and diet control. My symptoms have been pretty mild thankfully. But lately Iv been waking up every night after 4-5hrs of sleep with lower back pain, I usually have to take something to fall back asleep. Have you experienced this? Any suggestions on how to correct, Iv noticed sleep position sometimes helps but otherwise I’m not sure. Hate taking meds also
I was newly diagnosed with AS, months ago I changed my diet, weight train(I use mostly machines) it really always helps. My doctor wants to start me on biologics and I am scared to death to start . That being said I want to know if you are taking any kind of medicine. I read many you tube stories, most never mention if they are also taking medication?
I was diagnosed at 40 after years of no diagnosis. I have tried many biologics and finally found success with remicade and methotrexate. I was scared to try them but I’ve finally got my life back. I’m almost pain free and able to function. I also do physical therapy and changed my diet. It all helps. Don’t be led by fear. They will monitor your bloodwork regularly and the first sign of things going wrong you can easily stop the drug and try something else. Good drs will ensure you remain safe throughout your biologic journey if you go that route. Wishing you well.
I’m 27 and was diagnosed two years ago.I said no to biologics at first but my symptoms progressed so much that I needed something. Been on Humira for almost two months now and feel better than I have in as long as I can remember. Diet is still key and so is exercise. Just makes it so much easier with mobility back in action. Hope the best for you 🙏
Try Homeopathy medicine it would work. The idea is to retain flexibility. If the tissue of the spine could be repaired that would help to regain flexibility.
Carnivore is great, but be prepared for oxalate dumping. It's brutal. When you dump oxalates, you will feel much worse. It's best to slowly enter the carnivore diet over a period of a year, slowly ending veggies.
Hard to sustain it and I had a lot of electrolyte issues…but finding the best diet for you is key…reducing processed carbs and going low starch was the most beneficial thing I saw
At 28, from Pakistan, I've battled this condition since age 10, losing 18 precious years. Initially dismissed as leg pain, it worsened, stumping doctors due to a lack of awareness about HLA B27/AS. Misguided painkiller prescriptions led to digestive issues, forcing me into two years of bedridden agony and halting my education. After three years of futile treatments, I found relief in a more advanced city, where a renowned rheumatologist diagnosed AS and recommended surgery as the sole remedy. Even at this moment, I find it challenging to lie down fully, as my posture remains constantly bent. Sitting on the floor or walking for more than 10 minutes leaves me breathless, and I struggle to bend or lift my legs.
People might also want to check out the physical therapists channel "Bob and Brad" the video is called Ankylosis Spondylitis Self-Treatment . One of the PT's has AS. He talks about this in several videos and how he treats himself.
Just a relief to see a guy around my age with the same condition. I’m 20 years deep with this, and honestly I deal with this in typical male fashion (ignore it and carry on with life) now that I’m 38, it’s becoming apparent that daily exercise is going to be required in order to maintain a quality of life. Thanks for the video, I’ll be sure to check out the rest of your videos, all the best from Scotland
🙏🙏
your points on the impact of nutrition is so so warranted. had similar experience in that physicians didnt recognize value of nutritional changes, even after i experienced impactful lasting improvements. for me the most difficult thing has been trying to find a manageable balance between doing enough to stay fit, while being realistic about the limitations and importance of walking the razors edge of "just enough". it can be wildly frustrating for somebody who is used to being very active to accept that things must be experienced at a lower boil. wishing all those who suffer from AS strength and resilience in managing the disease, while continuing to live a full life and have energy to bring their focus elsewhere if possible. now, 60 yeras of age, ive suffered with the disease since my early 20s, and have managed the condition without meds so i feel very very fortunate. BUT, i was not properly diagnosed until i was 50. had i known earlier, i would have taken actions to be more fully educated and aware of the dynamics and value of cautiousness in my athletic endeavors, rather than pushing myself hard that put more wear and tear on my joints than would be ideal, and have come home to roost in my 4th quarter of life.
Appreciate it!!
Keep moving don’t overload or tomorrow will cost. 52 here since childhood but ok. Lost my job as an electrician at 40 for cervical spine problems. Sleeping becomes impossible sometimes feels like rigor mortise setting in so I move. Great work spreading awareness;)
Appreciate that 🙏🙏
I was diagnosed at the beginning of the pandemic. The rheumatologist told me i had it and told me to take prednisone. I looked it up and it didn't sound like me. Fatigue was absolutely horrible. I was bedridden for months and would yell because of the cramping that felt like is was pulling my muscle out of the socket. So they started looking for other things.
One day i had an ad come up for AS and I went down a rabbit hole. I realized that every single thing I have is found with AS.
Teaching regarding a new disease is essential. Thank you for doing this.
I’m 62 and never knew I had AS. I found out because my older brother got diagnosed, so I got tested. I’m a lifetime martial artist with 53 years of training and 40 years of teaching. I looked at my growing aches and pains and tightness as a part of my decades in the martial arts and in weight training. But these past four years got more and more painful. I’m grateful to finally know why. I jumped on a plant based diet and herbs and supplements and lowered my inflammatory markers tremendously. I’m learning more each day, and I’m glad to have found your channel.
Ive had AS for amost 7 years , unfortunately 2 years ago i got a c6/7 spinal cord injury and now im quadriplegic and more stiff
I'm B27 positive and had unusal symptoms all my life, I've had an inflamed neck and eyes all my life and now get inflamed middle back intermittently at night, so weird but not full blown AS, I've been gyming for 20 years, my go to is heavy decline bench, over 200lb to stretch myself out, also heavy close grip pull down to stretch myself out, heavy row machine but with chest support so no pressure to lower back, all this helps with going deep into my back to make sure those facet joints are moving and my nerves are stretched...
Keep posting and giving tips for AS sufferers, youll get a large following
I really needed to see this video today! 10 years with AS and I can’t get out of the future to be present for right now in life! Thank you!
🙏🙏
Glad I found your channel.. I'm 35 been diagnosed for close to 12 years. My posture has been shot .. but still trying to stay active
Yeah I shrunk 3 inches...at least I have long legs...😂
🙌 thank you
Thanks for this
Cant believe you have this, you seem so... Full of life!
I’m trying haha
Getting mental health medical help as well as physical.💗
Absolutely
Sem problem
Changing my diet to AIP made a huge difference. It is difficult to stick to it though and I feel the difference. The other thing is yoga and moving - but not overdoing it. Weight gain is a major issue - not sure how I can address it (came though menopause and pandemic). I am too tired for more exercise…
Keep going!
Cant do the diet its sould destroying but have inflammatory bowel because of ankylosing spondylitis so need to do something but will i be attacked anyway ..
Changing my diet now. Movement is a real challenge.
It is for sure…it took me awhile to piece it together. Keep trying different methods and shorter routines at first.
Best advise I got - Motion is lotion. For me it's a trade off due to spinal and neck fusions, so the impact just from walking causes neck pain at the base of my skull but I still feel much less pain everywhere else from a half hour walk during my lunch break.
Yes! Same here. I walk my son to school and the days i dont I am so much stiffer! My dr did say movement is your best friend thats the best advice i got but she never asks if i actually move
🙌🙌🙌
U are a blessing! Are you medicated?
diet and exercise are everything!
Yes 💪💪💪
Can someone test positive for the HLA-B27 and not have this? I tested positive for the gene and was sent to a rheumatologist because I was having shoulder neck and spine problems but my rheumatologist doesn’t seem to think that I have this because my blood work other than the gene being positive was normal My inflammatory markers were normal, but I was diagnosed with degenerative disc disease and C6 in C7. With cervical osteoarthritis, also osteoarthritis in the AC joint with a slight curvature of the spine. Also, I have spondylosis but rheumatologist seems to think it’s from wear and tear so I’m confused I do not understand why I tested positive for the gene and have all of these issues including fatigue pain at night in my thoracic back, especially when I take deep breaths. I also have arthritis in my thoracic spine too and I’m thinking is all of this due to me having AS or is it wear and tear and then there’s the gene which was positive but yet he doesn’t seem to think that I have this I don’t want to be overdiagnosed, but I certainly don’t want to be underdiagnosed, he did a full body x-ray of my spine and said that my SI joints looked normal in the spaces in my back were wide-open and clear other than some bone spurs which I had a few and those other issues I mentioned, so my question is where do I go from here? Do I take his word or do I get a second opinion? I don’t know if someone can test positive for this gene and not have it. I don’t understand what kind of weight it carries, any feedback would be helpful.
5:11 Please go to someone else. Yes, you can HLA-B27 and not have it. You saw changes on your X-Ray. You have symptoms. Everyone is different in how they present. My cervical spine was shot long before my SI joint was affected, for example. My first symptom was shoulder pain.
@@Katie-qg7xz Thank you!!!!
Hey bro, I appreciate the video and your intentions with the channel. I’m 27 with AS going on 8 years, I’m huge into fitness and diet control. My symptoms have been pretty mild thankfully. But lately Iv been waking up every night after 4-5hrs of sleep with lower back pain, I usually have to take something to fall back asleep. Have you experienced this? Any suggestions on how to correct, Iv noticed sleep position sometimes helps but otherwise I’m not sure. Hate taking meds also
I was newly diagnosed with AS, months ago I changed my diet, weight train(I use mostly machines) it really always helps. My doctor wants to start me on biologics and I am scared to death to start . That being said I want to know if you are taking any kind of medicine. I read many you tube stories, most never mention if they are also taking medication?
I was diagnosed at 40 after years of no diagnosis. I have tried many biologics and finally found success with remicade and methotrexate. I was scared to try them but I’ve finally got my life back. I’m almost pain free and able to function. I also do physical therapy and changed my diet. It all helps. Don’t be led by fear. They will monitor your bloodwork regularly and the first sign of things going wrong you can easily stop the drug and try something else. Good drs will ensure you remain safe throughout your biologic journey if you go that route. Wishing you well.
I’m 27 and was diagnosed two years ago.I said no to biologics at first but my symptoms progressed so much that I needed something. Been on Humira for almost two months now and feel better than I have in as long as I can remember. Diet is still key and so is exercise. Just makes it so much easier with mobility back in action. Hope the best for you 🙏
Machines have helped me so much
@@jarrydmoore8727keep going!!
@@HappyCatHappyLifegreat stuff!!
Diet & movement 100% my dr always discredits the nutrition part
🤦♂️🤦♂️
Try Homeopathy medicine it would work. The idea is to retain flexibility. If the tissue of the spine could be repaired that would help to regain flexibility.
Anyone here had an ESR SED rate blood test?
I do just like that. 💪🌱 and I eat raw low-calorie fruits and vegetables, no proteins or meat. I fell great!
I’m trying carnivore/keto to see how inflammation goes …..anybody seen any changes? I
Carnivore is great, but be prepared for oxalate dumping. It's brutal. When you dump oxalates, you will feel much worse. It's best to slowly enter the carnivore diet over a period of a year, slowly ending veggies.
Hard to sustain it and I had a lot of electrolyte issues…but finding the best diet for you is key…reducing processed carbs and going low starch was the most beneficial thing I saw