I'm from Syria and I suffer from spondylitis More than war itself .I am following you from the most dangerous areas in the world to keep thinking positively ......
I was just diagnosed with AS in March 2020, I was 32 yrs, it was devastating, i felt my life is over! Im still in my flier up, still getting to know and familiarize with the disease... i thought i was 1 in a million case but while surfing the net and youtube i found other cases such as you, and it helps alot, your positivity and tips are a huge help... thank you soo much for your videos, God Bless, Peace... ❤
Great video, I have AS and lived with all the symptoms for years taking far too many Nsaids, I have just discovered the incredible relief AS sufferers can get from a dramatic diet change and have been almost symptom free for a month now with no more Nsaids for the first time in many years. if you haven't already you need to study up on the starch free diet for A.S. it will amaze you . good luck.
@Tony 'La Haya' Hi Tony, It has worked for so many people , I'm sure you will get relief if you can follow the strict diet, this website has lots of interesting reading about A.S. www.kickas.org/asfood.shtml
I started off really strict eating just meat and green veg, so stopped all grains and rice, sugars and starchy veg, but after a few weeks have started eating fruits and even made my own bread from almond flour, still 95% pain free with no meds at all. I too had a lot of pain for many years Tony and I couldn't believe it could be fixed by diet but it is true.
@Tony 'La Haya' try fasting for 2/3 weeks thats how i got rid if my Rieters Syndrom after 6 months. But i know have AS so i cycle between fasting & meds but it never really goes away completely but my sleep deprevation is the worst part, i can handle pain but after 2or3 nyts not sleeping i become a crabbit nightmare frustrated at everything so good luck on becoming pain free bro! 👍
Hey Izzy, I have AS & Sacoilitis, but mines started from Reiters Syndrom at 26 after contracting an infection, so i had fluid in every joint for almost 6 months & was bed & house bound in severe agony like i was literally a prisoner in both, ive has a couple of accidents in my life too being knocked down at 14 on a dual caridge way so i broke both arms & my right leg & nose so it took 18 months of physiotherapy to get back on my feet, the joined the army at 17 & after 8 months had an accident then was medically discharged after badly breaking the same leg & having PTSD so im up & down with depression & flare ups now so its nice too see your videos, it makes me feel better becacuse im really embarrassed by my disease & trying to explain my symptoms to people really frustrates me because they could never really understand so it makes relationships extremely difficult so your optimism is refresshing so thanks for caring & sharing it has actully made me feel better i hope u feel better too & not in a flare up or to much pain, one love from bonnie Scotland 💚🍀🍀🍀
thank you for making these videos! I was recently diagnosed, and I'm a young woman in her 20s trying to stay as active and healthy as possible. It's great to see you can be happy and enjoy life and stay active even with AS :)
Thank you so much for your videos. I have just been diagnosed with AS a month ago at the age of 43, so pretty late. I am now on day 4 of a flare up and really struggling to stay active as advised by the doctor. I am currently having to use a crutch to help me get around as my hips knees and ankles are all inflamed. I love how upbeat you are it is really encouraging. Thank you once again Xx
Love your positivity! I struggle to have the same positive outlook, get really down about not being able to do the things I want to do. Having a break from my studies as it was all too much, the pain, brain fog, fatigue. I'm interested to know what you do for work when you aren't travelling?? I have always worked in hospitality, but it is so hard being on my feet all day! Just discovered your videos and loving them! Thank you for sharing your story xx
tayla Redhead i read your message and we sound like the same person 😜 it’s been a struggle I’m finally getting placed on a biologic.. have you tried sleeping upright? I have an adjustable base on my bed and its has been the most helpful thing for me! Definitely worth trying out.. sending you well wishes!
Thank you, your vids helped me with my diagnosis, 6 years in (nearly 1 diagnosed) and I find physical exercise to be a huge help and stretching is a god send. I am off all meds (humira, sucukinumab and NSAIDS) due to thrombocytopenia and without stretching daily and exercise I would be dead. My inflammatory markers are off the charts so fatigue is massive, but it’s so important to keep moving, but also rest. The balance can be so hard but so important. Best wishes Izzy.
Hi Izz, how are you? I love your videos, my bf has AS and I'm always trying to find material about it so I can help him. I wanted to show him this video, but hi doesn't understand english that well (we're from Brazil). Am I allowed to subtitle your video to portuguese? Thank you for sharing those videos and your point of view, it really helps me understand his pain
EXCELLENT VIDEO! You were SPOT ON on everything you said & those things (all of those actually) helps me tremendously! Thank you so much for the videos & your channel & good luck on your travels & take care! Dannelle in South Carolina
Have you looked into Hyperbolic oxygen chambers or infrared lights for full body? Looking into these as nothing else seems to be working. I do like your advice about just accepting the pain. I THOUGHT I was doing that but I didn’t follow through. I didn’t do the “move on” part, only the accepting. If you stop at the accepting and don’t move past it, it can cause great lvls of depression. Once depression sets in, one can spiral down fast. I felt this enlightened moment when you spoke about the moving past it part.
Have you tried any heat therapies such as using a sauna? Hot salt baths at home seem to help me quite a bit with my back/knee pain. Awesome video, keep it up!
ah yes!! I used to LOVE the sauna and hot pool at my old gym but travelling means it’s a bit harder to access those things! Hot salt baths are a great idea - will have to try! Thank you! 😘😘
Diaphragmatic breathing is awesome for pain and anxiety! I recently found out I have joint hypermobility and it might explain a lot of my chronic pain. I live in Canada where it gets _very_ cold and my pain is much worse in the winter
@@ThisIzzTheLife its ok 😊 also like you, the change in weather really effects my AS, I'm a lot worse in the cold. Ive recently started cimzia injections and it has really helped. For me, stretching and keeping active does help to a point, but there is a fine line between helping and overdoing it and making the pain and inflammation worse. But part of that is the AS and also hypermobility. Do you also get worse around the time of your period? Hormones really set me off.
I have AS and joint hypermobility too and would love a video on it! Also, I read somewhere that the decrease in oestrogen and increase in progesterone can increase joint mobility which may be why hypermobile joints (hips for me) can get super loose and painful around your period. "Many hypermobile patients, though not all, noticed a worsening in symptoms, more pain in the joints, clumsiness or a greater tendency to dislocate in the five days leading up to menstruation and in the few days after menstruation. This is exactly the time when the progesterone compounds far exceed the stabilising oestrogen compounds." hypermobility.org/help-advice/hormones-hypermobility/
Can anyone answer this? Anyone else with AS find that intermittent fasting for several days seems to bring symptoms down from the type of pain where you need medication to the level where ok there is stiffness and discomfort but no unbearable pain ..?
You will neve have " spine fusion" which is in " spondylitis ankilosante"= fusion of spine.... is not possible to have "hypermobility" in spondilite ankilosant ...please try to understand what i say after 60 years of SA axiale....!!
I wish I could talk about my experience with this disease, or some one els talk about my experience with it :( , I'm talking about it through drawing...
Also I’m sorry to hear that you have no one to talk to directly. Online communities can be a great source of support though. Drawing is a great way to express emotions, I also love to draw. Good luck. 😘
Just in case you haven't come across Ralph I wanted to give you a link to his channel. If you're open to a new perspective, this can change your life. AS i lived it: Healing Chronic Pain & Ankylosing Spondylitis: ua-cam.com/play/PLaEykmIslcxhfEyXj0-imS4kmb3GEs8_x.html
'Spondylis= vertebra and ankilosis= curvature of spine.....you have spondilartitis with hypermobility but not ankilosant spondilitis....i know what i say !!!
Ankilosing Spondylitis is not with " hypermobiliti" is with " fusion of spine'.....you make a great mistake.....not that you have no pains ... but is not ankilosing = spine fusion"..... you will not have ever fision of spine ....is "joints " but not " spine fusion" met in ankilosing spondilitis....believe me......one is joints and another " spine"....
I'm from Syria and I suffer from spondylitis
More than war itself .I am following you from the most dangerous areas in the world to keep thinking positively ......
Hi, thanks for commenting! I’m sorry to hear that you are suffering so much. Wishing you all the luck in the world and keep thinking positively. ♥️
My apologies for the destruction our country has caused yours.. I wish I had power to stop it..
From one AS Warrior to another, wishing u all the best and minimal flares. Cheers fam
I was just diagnosed with AS in March 2020, I was 32 yrs, it was devastating, i felt my life is over! Im still in my flier up, still getting to know and familiarize with the disease... i thought i was 1 in a million case but while surfing the net and youtube i found other cases such as you, and it helps alot, your positivity and tips are a huge help... thank you soo much for your videos, God Bless, Peace... ❤
Any doctor that you can recommend for my brother In India or UAE ? That would be of a great help. Thanks 😊
Great video, I have AS and lived with all the symptoms for years taking far too many Nsaids, I have just discovered the incredible relief AS sufferers can get from a dramatic diet change and have been almost symptom free for a month now with no more Nsaids for the first time in many years. if you haven't already you need to study up on the starch free diet for A.S.
it will amaze you . good luck.
Thank you for sharing!!
@Tony 'La Haya' Hi Tony, It has worked for so many people , I'm sure you will get relief if you can follow the strict diet, this website has lots of interesting reading about A.S. www.kickas.org/asfood.shtml
I started off really strict eating just meat and green veg, so stopped all grains and rice, sugars and starchy veg, but after a few weeks have started eating fruits and even made my own bread from almond flour, still 95% pain free with no meds at all. I too had a lot of pain for many years Tony and I couldn't believe it could be fixed by diet but it is true.
@Tony 'La Haya' try fasting for 2/3 weeks thats how i got rid if my Rieters Syndrom after 6 months. But i know have AS so i cycle between fasting & meds but it never really goes away completely but my sleep deprevation is the worst part, i can handle pain but after 2or3 nyts not sleeping i become a crabbit nightmare frustrated at everything so good luck on becoming pain free bro! 👍
Hey Izzy, I have AS & Sacoilitis, but mines started from Reiters Syndrom at 26 after contracting an infection, so i had fluid in every joint for almost 6 months & was bed & house bound in severe agony like i was literally a prisoner in both, ive has a couple of accidents in my life too being knocked down at 14 on a dual caridge way so i broke both arms & my right leg & nose so it took 18 months of physiotherapy to get back on my feet, the joined the army at 17 & after 8 months had an accident then was medically discharged after badly breaking the same leg & having PTSD so im up & down with depression & flare ups now so its nice too see your videos, it makes me feel better becacuse im really embarrassed by my disease & trying to explain my symptoms to people really frustrates me because they could never really understand so it makes relationships extremely difficult so your optimism is refresshing so thanks for caring & sharing it has actully made me feel better i hope u feel better too & not in a flare up or to much pain, one love from bonnie Scotland 💚🍀🍀🍀
Yes cold increases flare ups and general pain for me..
thank you for making these videos! I was recently diagnosed, and I'm a young woman in her 20s trying to stay as active and healthy as possible. It's great to see you can be happy and enjoy life and stay active even with AS :)
Best distraction.... try to fall in love...no pain for 2 months 😂💕
Great ideas and positive smiley video thanks hun!!!
Thank you so much for your videos. I have just been diagnosed with AS a month ago at the age of 43, so pretty late. I am now on day 4 of a flare up and really struggling to stay active as advised by the doctor. I am currently having to use a crutch to help me get around as my hips knees and ankles are all inflamed.
I love how upbeat you are it is really encouraging. Thank you once again Xx
Thank you so much for sharing this, I just got diagnosed with AS today after a year of sleeplessness... please keep making such nice videos...
Love your positivity! I struggle to have the same positive outlook, get really down about not being able to do the things I want to do. Having a break from my studies as it was all too much, the pain, brain fog, fatigue. I'm interested to know what you do for work when you aren't travelling?? I have always worked in hospitality, but it is so hard being on my feet all day!
Just discovered your videos and loving them! Thank you for sharing your story xx
tayla Redhead i read your message and we sound like the same person 😜 it’s been a struggle I’m finally getting placed on a biologic.. have you tried sleeping upright? I have an adjustable base on my bed and its has been the most helpful thing for me! Definitely worth trying out.. sending you well wishes!
Thanks! I didn't know Costro Condryiitis was a thing, but I definitely experience it.
SponDillyUmptious no worries! 🤗 xx
Same!!!! Omg!
Thank you, your vids helped me with my diagnosis, 6 years in (nearly 1 diagnosed) and I find physical exercise to be a huge help and stretching is a god send. I am off all meds (humira, sucukinumab and NSAIDS) due to thrombocytopenia and without stretching daily and exercise I would be dead. My inflammatory markers are off the charts so fatigue is massive, but it’s so important to keep moving, but also rest. The balance can be so hard but so important. Best wishes Izzy.
And yes... the cold is worse..... I love sunshine and warmth where I used to be a cold Lover.
Thank you very much
I have recently diagnosid with AS iam always thinking about how can i manage this pain ..this will be usfull ..
Thanks for sharing
nour refaai No problem! Thank you for watching! Xxx
Hi Izz, how are you? I love your videos, my bf has AS and I'm always trying to find material about it so I can help him. I wanted to show him this video, but hi doesn't understand english that well (we're from Brazil). Am I allowed to subtitle your video to portuguese? Thank you for sharing those videos and your point of view, it really helps me understand his pain
EXCELLENT VIDEO! You were SPOT ON on everything you said & those things (all of those actually) helps me tremendously! Thank you so much for the videos & your channel & good luck on your travels & take care! Dannelle in South Carolina
Have you looked into Hyperbolic oxygen chambers or infrared lights for full body?
Looking into these as nothing else seems to be working.
I do like your advice about just accepting the pain. I THOUGHT I was doing that but I didn’t follow through. I didn’t do the “move on” part, only the accepting. If you stop at the accepting and don’t move past it, it can cause great lvls of depression. Once depression sets in, one can spiral down fast.
I felt this enlightened moment when you spoke about the moving past it part.
Have you tried any heat therapies such as using a sauna? Hot salt baths at home seem to help me quite a bit with my back/knee pain. Awesome video, keep it up!
ah yes!! I used to LOVE the sauna and hot pool at my old gym but travelling means it’s a bit harder to access those things! Hot salt baths are a great idea - will have to try! Thank you! 😘😘
prolonged heat can sometimes increase inflammation although it soothes and relaxes the muscles, cold therapy will help bring down the inflammation!
Diaphragmatic breathing is awesome for pain and anxiety! I recently found out I have joint hypermobility and it might explain a lot of my chronic pain. I live in Canada where it gets _very_ cold and my pain is much worse in the winter
Very informative. Appreciate a lot
How are you doing now? I see it’s been a long time since you posted a video.
I have joint hypermobility as well as AS too. I would love a video on that
L C thanks for letting me know! ♥️
@@ThisIzzTheLife its ok 😊 also like you, the change in weather really effects my AS, I'm a lot worse in the cold. Ive recently started cimzia injections and it has really helped.
For me, stretching and keeping active does help to a point, but there is a fine line between helping and overdoing it and making the pain and inflammation worse. But part of that is the AS and also hypermobility. Do you also get worse around the time of your period? Hormones really set me off.
I have AS and joint hypermobility too and would love a video on it! Also, I read somewhere that the decrease in oestrogen and increase in progesterone can increase joint mobility which may be why hypermobile joints (hips for me) can get super loose and painful around your period. "Many hypermobile patients, though not all, noticed a worsening in symptoms, more pain in the joints, clumsiness or a greater tendency to dislocate in the five days leading up to menstruation and in the few days after menstruation. This is exactly the time when the progesterone compounds far exceed the stabilising oestrogen compounds." hypermobility.org/help-advice/hormones-hypermobility/
justanotherface14 wow that’s so interesting!! Thank you for sharing! And thanks for letting me know that’s something you would be interested in! 😘😘❤️
L C ah wow! It’s nice to know I’m not alone!
Can anyone answer this?
Anyone else with AS find that intermittent fasting for several days seems to bring symptoms down from the type of pain where you need medication to the level where ok there is stiffness and discomfort but no unbearable pain ..?
You are imazing 🤗
You will neve have " spine fusion" which is in " spondylitis ankilosante"= fusion of spine.... is not possible to have "hypermobility" in spondilite ankilosant ...please try to understand what i say after 60 years of SA axiale....!!
I wish I could talk about my experience with this disease, or some one els talk about my experience with it :( , I'm talking about it through drawing...
Also I’m sorry to hear that you have no one to talk to directly. Online communities can be a great source of support though. Drawing is a great way to express emotions, I also love to draw. Good luck. 😘
👍
Just in case you haven't come across Ralph I wanted to give you a link to his channel. If you're open to a new perspective, this can change your life.
AS i lived it: Healing Chronic Pain & Ankylosing Spondylitis: ua-cam.com/play/PLaEykmIslcxhfEyXj0-imS4kmb3GEs8_x.html
I have the same
Hi
Hi,,u looking gorgeous..👌👌
'Spondylis= vertebra and ankilosis= curvature of spine.....you have spondilartitis with hypermobility but not ankilosant spondilitis....i know what i say !!!
I apreciate YOUR VIDEOS BUT IS A CONFUSION OF DIAGNOSE...!!
Ankilosing Spondylitis is not with " hypermobiliti" is with " fusion of spine'.....you make a great mistake.....not that you have no pains ... but is not ankilosing = spine fusion"..... you will not have ever fision of spine ....is "joints " but not " spine fusion" met in ankilosing spondilitis....believe me......one is joints and another " spine"....
Have u had a baby?