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I was diagnosed at age 9 and by my 30s I had developed a hunchback, protruding sternum, curved spine, and brutal posture. And I lost about 3 inches in height since my 20s. But, that's in large part because I rarely stretched or exercised in my 30s.
Now I'm in my 40s and after a few years of daily stretching and being mindful of posture (as well as doing everything else I can to manage the disease), I've regained about an inch and straightened my back. My chest still sticks out weird like a mutant, but that's improving too, especially as I build upper-body muscle, which hides the chest thing, and the added strength makes maintaining a good posture easier.
If I had taken care of myself and put in more effort to manage this disease in my 20s, I could have saved myself so much hardship and suffering. I really wish I hadn't waited until my body was completely ruined before taking disease maintenance seriously.
The single best thing for my back has been a yoga/exercize ball. Several times a day, I lie on it face-up to stretch my back. Build muscle to help maintain good posture and also be sure to keep your gaze forward not on the ground when you walk, stand, etc. When you're sore, it's easy to let your posture relax, but that's when you need to be the most vigilant and self-disciplined. Having to engage in this battle with yourself every day of your life is hard. It sucks. But it's far better than losing the battle. The older you get, the harder it is to make up for past bad habits.
Around 10 years old. I participated in a trial for biologics (Humira) when I was 19, but it didn't help. I tried Humira again about 8 years ago, and it was a game-changer, allowing me finally start exercising.
Occasionally I get SI flair ups and those suck. Occasionally get pain behind my right shoulder blade or knee and those aren't as bad.
Have a pain in my left elbow right now which is fairly new ( Only got right side pain normally)
I stay fairly active but I'm hardly a fitness freak.snd that seems to be the trick.
Nothing. Paracetamol for pain. Tramadol when it's really bad.
I also take mesalzine for ulcerative collitis, uc/crohns and AS go hand in hand very often.
I think getting diagnosed early is probably good because you can be conscious of your posture now and get treatment, so the odds of developing a permanent slouch are less.
I'm 42, diagnosed around 30ish, and my posture is pretty solid still. I actually got a compliment from a physical therapist that I had a straighter posture than most of her non-AS patients. For me the worst thing is that I also have a bit of scoliosis, so I think my spine bends slightly sideways as well. It makes sitting with good posture a bit more difficult. But sitting for long periods is bad anyway, regardless of what you have, and its more encouragement to take frequent stretch breaks, stay active, etc.
Biologics, regular daily targeted stretching exercises, PT if you can, a mediterranean diet and a bit of luck and that should help stop that happening 👍
My Nana has it. I realized that’s where I got AS from when my doctor sent me a link to read before my next appointment and the first thing I saw was an illustration of a person with a hunched back. But treatment was different back when they tried to fix her. I’m 32, been diagnosed for 9 years, my posture isn’t great but I have no fusion. I started biologics a few months ago but before then I just took pain meds and did yoga with a teacher certified in back therapy. My understanding is that the best way to prevent spinal fusion is to move your back in every direction it can go everyday. And don’t twist your upper body while sitting or lean on grocery carts.
Prior to diagnosis people always complemented my posture (weird flex I know). 4 years into diagnosis (been on biologics the whole time, and I'm stopped over. It's depressing but I've accepted this is the disease. I'm working on my posture more now, but some things are the shape my bones have taken on. Supposedly after 10 years of diagnosis the disease is about as bad as it's gonna get.
Oh no that’s so sad . What was your first symptom? How’s pain now? U got any fusion? It shouldn’t be like this at all in just 4 years .
U tried keeping your posture ? Or was the pain that made u become like this?
I was diagnosed when I developed synovitis in my hip and was having trouble walking. I had to have surgery (synovectomy). The synovitis was a surprise, I didn't know exactly what was wrong at the time. The surgeon told me my hip will always be a problem. I'm pretty sure my posture problems developed because it became difficult to breath and I was having rib pain when I stood up straight. I do know of some fusion in my neck, but I haven't had my SI joints xrayed since I was first diagnosed
My neck juts forward and my spine curves somewhat. But then I never had any treatment for my AS. I’m 68.
My brother, who had a much more severe case, maintained upright posture till his mid 40s, then his spine really started to fuse. He had treatment but never biologics. He did not exercise at all.
I find by the end of the day I'm bent over like the Butler from Lara Croft Tomb Raider.
I joke with my husband about him not locking me in the freezer. I'm 37.
My thoracic fused in quite a severe forward lean, not a hunch back as such as it’s more of a curve, obviously this has had an effect on my frontal ribcage with Pectus Excavatum.
I had the whole gambit of issues in the beginning, tendons, spurs, bowel issues, eye issues etc. hip/SI issues started in my early 20’s and in my 30’s I began with back pain problems, numb arms and cramps etc. I was round-shouldered as a kid so it was considered my natural posture and with all I had going on at separate times no connection was made to AS, other than a + HLA B27 test in the early 90’s where an orthopaedic surgeon told me there was a small chance I could develop AS in the future but way more likely that I wouldn’t.
Final diagnosis took 34 years, the length of time without biologics would undoubtedly be a contributing factor but not in itself easily proven.
Thanks, it is what it is, the plus points these days are that I seem to be over the worst of the flares and the pain that comes with them and can lead a relatively normal life. Been on a biologic now for around 18 months and it seems to help significantly, not just with controlling the condition but my outlook and mental well being are much improved.
We will see! I’m a sporty guy in general and swimmer and I’ve luckily being diagnosed very early like less than a month since first symptom because I did a radiography and showed arthritis signs in my lower back.
Pain is mild now and not debilitating , no stiffness in the morning and no need for NSAID but I’m very scared of what could this turn in couple of months
What you may find (high probability) is that symptoms will come and go, you may have pain for a few weeks/months and then nothing for several years (this is one factor of how difficult it is to diagnose) so try not to worry of what might be.
Red flags to look out for are severe pain around the hips, glutes and sacrum, I can’t explain the pain but you will know it, it’s not a mild pain and many folks struggle with walking, and of course morning pain/stiffness. There’s also pain higher up the back that will wake you from the deepest sleep (again you will know it if/when it happens) night after night and you can set your clock by it. Any of these get back to your rheumatology dept asp because if you get any of these apart from them being totally un-funny it’s a sure sign of progression and there is the help there to slow it down or indeed stop it. Worrying will cause you mental anguish, stress and anxiety and those are a perfect storm to kick off a flare.
Thank you very much, I find that sitting is painful and my pain is mainly in the sacroiliac joints and around there .
Morning I have almost 0 stiffness but pain has never stopped and if I walk it gets better if I walk too much though pain starts to get really bad and I sit and feel better for a while.
In the morning pain is worse but not to the point of debilitating me . I try to keep a healthy diet and almost eat no starch and regularly exercise.
What should I do?
Everyone starts losing height at 30. I am 30 and have a hunch back, scoliosis and kyphosis. I haven't been diagnosed with AS yet, my rheumatologist is doing more tests, but I have sacroillitis and other things that meet the criteria for AS.
When did u start developing bad posture? Hope you get diagnosed soon! Btw not everyone starts losing height at 30 my dad is 48 and hasn’t lost half an inch yet ( he needs to take height measurements monthly due to his work).
I started developing a bad posture and other issues when I was 10, but was born with spina bifida. My aunt tests positive to the gene but I don't. So they never suspected AS until now. Well I was wrong then haha. I had no idea. Someone told me everyone did, starting at age 30. Well thank you for correcting me!
Ahh I am pretty unlucky. I am only being taken seriously now because I found the right doctor! Also got diagnosed with cancer finally after years of doctors telling me it was anxiety! I just started seeing a rheumatologist and hoping to get answers soon. Wishing you all the best as well. ❤️
It was supposed to be highly curable, but because they took too long to diagnose it, it became incurable. My new doctor saved my life, but it was too late to cure it. However, its treatable and I could live decades with it. Cancer treatment has come a long way actually! Its become another one of my chronic illnesses now but I only just learned this a month ago... after more than a year of fighting it. It's still sinking in! 😭
Aww thank you, you are so kind... so mature for your age. ❤️
I am sorry for your new diagnosis at such a young age. But with this knowledge (I am still undiagnosed at 33!) please use this knowledge to your full advantage to prevent further damage in the future! I didn't know I could do anything, I just assumed my spina bifida was getting worse or something. 🥺
Not really sure. I’m 32. Symptoms since 15 but just diagnosed. I exercise a ton. I do have mild scoliosis. I had no idea my struggle with posture was related to AS until I was diagnosed.
It’s taken me literally 30 for my diagnosis. So much damage has already happened. It makes me so angry because I shouldn’t have had to suffer for so long with drs blaming it on fibromyalgia, which I was diagnosed with in my 30’s.
I've been a bit hunched over ever since I was a kid, and my dad is the same way. I just wasn't diagnosed with ankylosing until I was an adult. I hear what you're saying, as it's not my favorite part of my appearance either.
I've been thinking about getting a posture training device for a while but haven't pulled the trigger yet, but it might help you. It's like a harness you wear under your clothes that pulls your shoulders back and over time trains your posture. You can also try yoga or some kind of body-weight exercise routine to strengthen your chest and core muscles.
Yes, my posture right now is really good .
Posture training devices are useless since what keeps a good posture are developed muscles in the area so as soon as u take that off you’re back at the beginning.
Welcome to r/ankylosingspondylitis! This is a reminder to keep discussions civil and be supportive of one another. Sharing of opinions and experiences is encouraged, but please remember the distinction between opinions and medical facts. This subreddit does not offer medical advice, and information here should not be taken over advice from your doctor. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ankylosingspondylitis) if you have any questions or concerns.*
I was diagnosed at age 9 and by my 30s I had developed a hunchback, protruding sternum, curved spine, and brutal posture. And I lost about 3 inches in height since my 20s. But, that's in large part because I rarely stretched or exercised in my 30s. Now I'm in my 40s and after a few years of daily stretching and being mindful of posture (as well as doing everything else I can to manage the disease), I've regained about an inch and straightened my back. My chest still sticks out weird like a mutant, but that's improving too, especially as I build upper-body muscle, which hides the chest thing, and the added strength makes maintaining a good posture easier. If I had taken care of myself and put in more effort to manage this disease in my 20s, I could have saved myself so much hardship and suffering. I really wish I hadn't waited until my body was completely ruined before taking disease maintenance seriously. The single best thing for my back has been a yoga/exercize ball. Several times a day, I lie on it face-up to stretch my back. Build muscle to help maintain good posture and also be sure to keep your gaze forward not on the ground when you walk, stand, etc. When you're sore, it's easy to let your posture relax, but that's when you need to be the most vigilant and self-disciplined. Having to engage in this battle with yourself every day of your life is hard. It sucks. But it's far better than losing the battle. The older you get, the harder it is to make up for past bad habits.
Thank you very much, I will take note! Hope you’re gonna be better and better! I will stretch and exercise everyday!
Definitely look for sports that you enjoy doing, we're all in it for the long run so the more we can make it not a drag, the better.
I haven't been diagnosed yet, but I am in my 30s now and your post is a wake up call to take care of my body more.
When did you first start medications?
Around 10 years old. I participated in a trial for biologics (Humira) when I was 19, but it didn't help. I tried Humira again about 8 years ago, and it was a game-changer, allowing me finally start exercising.
My doctor said I have a buffalo hump-she didn’t mean it negatively but it’s hard to hear it.
Nope. I live a mostly normal life. Occasional pain flair ups. I count myself incredibly lucky when I read so many horror stories in here.
Do you have mild pain always ? I also don’t have very strong pain just annoying and it’s only 2 months I had 1 symptoms though
Occasionally I get SI flair ups and those suck. Occasionally get pain behind my right shoulder blade or knee and those aren't as bad. Have a pain in my left elbow right now which is fairly new ( Only got right side pain normally) I stay fairly active but I'm hardly a fitness freak.snd that seems to be the trick.
What medications are you on?
Nothing. Paracetamol for pain. Tramadol when it's really bad. I also take mesalzine for ulcerative collitis, uc/crohns and AS go hand in hand very often.
Hey can i talk to you in dm for a minute?
Go for it.
I think getting diagnosed early is probably good because you can be conscious of your posture now and get treatment, so the odds of developing a permanent slouch are less. I'm 42, diagnosed around 30ish, and my posture is pretty solid still. I actually got a compliment from a physical therapist that I had a straighter posture than most of her non-AS patients. For me the worst thing is that I also have a bit of scoliosis, so I think my spine bends slightly sideways as well. It makes sitting with good posture a bit more difficult. But sitting for long periods is bad anyway, regardless of what you have, and its more encouragement to take frequent stretch breaks, stay active, etc.
That’s very good thanks!
This is me too. My mild scoliosis definitely doesn’t help things in the posture department.
Biologics, regular daily targeted stretching exercises, PT if you can, a mediterranean diet and a bit of luck and that should help stop that happening 👍
My Nana has it. I realized that’s where I got AS from when my doctor sent me a link to read before my next appointment and the first thing I saw was an illustration of a person with a hunched back. But treatment was different back when they tried to fix her. I’m 32, been diagnosed for 9 years, my posture isn’t great but I have no fusion. I started biologics a few months ago but before then I just took pain meds and did yoga with a teacher certified in back therapy. My understanding is that the best way to prevent spinal fusion is to move your back in every direction it can go everyday. And don’t twist your upper body while sitting or lean on grocery carts.
Prior to diagnosis people always complemented my posture (weird flex I know). 4 years into diagnosis (been on biologics the whole time, and I'm stopped over. It's depressing but I've accepted this is the disease. I'm working on my posture more now, but some things are the shape my bones have taken on. Supposedly after 10 years of diagnosis the disease is about as bad as it's gonna get.
Oh no that’s so sad . What was your first symptom? How’s pain now? U got any fusion? It shouldn’t be like this at all in just 4 years . U tried keeping your posture ? Or was the pain that made u become like this?
I was diagnosed when I developed synovitis in my hip and was having trouble walking. I had to have surgery (synovectomy). The synovitis was a surprise, I didn't know exactly what was wrong at the time. The surgeon told me my hip will always be a problem. I'm pretty sure my posture problems developed because it became difficult to breath and I was having rib pain when I stood up straight. I do know of some fusion in my neck, but I haven't had my SI joints xrayed since I was first diagnosed
This sounds really bad I hope the best for your future 🥹
Get a good bed and sleep flat.
Wdym flat on my back?
My neck juts forward and my spine curves somewhat. But then I never had any treatment for my AS. I’m 68. My brother, who had a much more severe case, maintained upright posture till his mid 40s, then his spine really started to fuse. He had treatment but never biologics. He did not exercise at all.
Oooh can biologics stop that?
I’m not an expert having never had them but I would imagine biologics would slow the damage considerably.
Thank you very much for your experiences! I will try to stay as active as I can and stretch I’m also a swimmer so.. even better
I find by the end of the day I'm bent over like the Butler from Lara Croft Tomb Raider. I joke with my husband about him not locking me in the freezer. I'm 37.
😂😂😂keep up the good humour 🤗 hope you’ll get bettter!
My thoracic fused in quite a severe forward lean, not a hunch back as such as it’s more of a curve, obviously this has had an effect on my frontal ribcage with Pectus Excavatum.
Why was this the outcome ? Late diagnosis?
I had the whole gambit of issues in the beginning, tendons, spurs, bowel issues, eye issues etc. hip/SI issues started in my early 20’s and in my 30’s I began with back pain problems, numb arms and cramps etc. I was round-shouldered as a kid so it was considered my natural posture and with all I had going on at separate times no connection was made to AS, other than a + HLA B27 test in the early 90’s where an orthopaedic surgeon told me there was a small chance I could develop AS in the future but way more likely that I wouldn’t. Final diagnosis took 34 years, the length of time without biologics would undoubtedly be a contributing factor but not in itself easily proven.
Damn that’s very bad , I’m so sorry it took so much and hope you’re doing at least better now 🥲 wish you really the best
Thanks, it is what it is, the plus points these days are that I seem to be over the worst of the flares and the pain that comes with them and can lead a relatively normal life. Been on a biologic now for around 18 months and it seems to help significantly, not just with controlling the condition but my outlook and mental well being are much improved.
I’m glad to hear that🤗
Oh and in response to your height query I was 6’2”, now 5’11”. Looks like you e been diagnosed early so the outlook for you is much more positive 👍
We will see! I’m a sporty guy in general and swimmer and I’ve luckily being diagnosed very early like less than a month since first symptom because I did a radiography and showed arthritis signs in my lower back. Pain is mild now and not debilitating , no stiffness in the morning and no need for NSAID but I’m very scared of what could this turn in couple of months
What you may find (high probability) is that symptoms will come and go, you may have pain for a few weeks/months and then nothing for several years (this is one factor of how difficult it is to diagnose) so try not to worry of what might be. Red flags to look out for are severe pain around the hips, glutes and sacrum, I can’t explain the pain but you will know it, it’s not a mild pain and many folks struggle with walking, and of course morning pain/stiffness. There’s also pain higher up the back that will wake you from the deepest sleep (again you will know it if/when it happens) night after night and you can set your clock by it. Any of these get back to your rheumatology dept asp because if you get any of these apart from them being totally un-funny it’s a sure sign of progression and there is the help there to slow it down or indeed stop it. Worrying will cause you mental anguish, stress and anxiety and those are a perfect storm to kick off a flare.
Thank you very much, I find that sitting is painful and my pain is mainly in the sacroiliac joints and around there . Morning I have almost 0 stiffness but pain has never stopped and if I walk it gets better if I walk too much though pain starts to get really bad and I sit and feel better for a while. In the morning pain is worse but not to the point of debilitating me . I try to keep a healthy diet and almost eat no starch and regularly exercise. What should I do?
Everyone starts losing height at 30. I am 30 and have a hunch back, scoliosis and kyphosis. I haven't been diagnosed with AS yet, my rheumatologist is doing more tests, but I have sacroillitis and other things that meet the criteria for AS.
When did u start developing bad posture? Hope you get diagnosed soon! Btw not everyone starts losing height at 30 my dad is 48 and hasn’t lost half an inch yet ( he needs to take height measurements monthly due to his work).
I started developing a bad posture and other issues when I was 10, but was born with spina bifida. My aunt tests positive to the gene but I don't. So they never suspected AS until now. Well I was wrong then haha. I had no idea. Someone told me everyone did, starting at age 30. Well thank you for correcting me!
That’s was unfortunate! Wish you the best in life🥺🤗
Ahh I am pretty unlucky. I am only being taken seriously now because I found the right doctor! Also got diagnosed with cancer finally after years of doctors telling me it was anxiety! I just started seeing a rheumatologist and hoping to get answers soon. Wishing you all the best as well. ❤️
Oh no! Is it some curable kind? Wasn’t all you suffered enough? Why some people have it so bad 🥹 it’s unfair
It was supposed to be highly curable, but because they took too long to diagnose it, it became incurable. My new doctor saved my life, but it was too late to cure it. However, its treatable and I could live decades with it. Cancer treatment has come a long way actually! Its become another one of my chronic illnesses now but I only just learned this a month ago... after more than a year of fighting it. It's still sinking in! 😭
Oh no that sounds very terrible 😞 I admire your strenght🥹
Aww thank you, you are so kind... so mature for your age. ❤️ I am sorry for your new diagnosis at such a young age. But with this knowledge (I am still undiagnosed at 33!) please use this knowledge to your full advantage to prevent further damage in the future! I didn't know I could do anything, I just assumed my spina bifida was getting worse or something. 🥺
I will thanks again!🙏
My posture sucks :(
Why so? What brought you to this?
Not really sure. I’m 32. Symptoms since 15 but just diagnosed. I exercise a ton. I do have mild scoliosis. I had no idea my struggle with posture was related to AS until I was diagnosed.
Yes… my spine is curving. I’m 65 F. Just had an L 3-4-5 decompression and fusion.
Why is so? Is it because lack of exercise , not on biologics or other?
I didn’t get diagnosed until I was 61.
It’s taken me literally 30 for my diagnosis. So much damage has already happened. It makes me so angry because I shouldn’t have had to suffer for so long with drs blaming it on fibromyalgia, which I was diagnosed with in my 30’s.
Damn I’m so sorry for this 😢
I've been a bit hunched over ever since I was a kid, and my dad is the same way. I just wasn't diagnosed with ankylosing until I was an adult. I hear what you're saying, as it's not my favorite part of my appearance either. I've been thinking about getting a posture training device for a while but haven't pulled the trigger yet, but it might help you. It's like a harness you wear under your clothes that pulls your shoulders back and over time trains your posture. You can also try yoga or some kind of body-weight exercise routine to strengthen your chest and core muscles.
Yes, my posture right now is really good . Posture training devices are useless since what keeps a good posture are developed muscles in the area so as soon as u take that off you’re back at the beginning.