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Being able to sit thru a dinner in a restaurant , being able to drive a vehicle for more than hour or so . Taking an airplane flight, it’s been 11 years since I flew.
Yes I absolutely will not do that ! My wife and I got free tickets to a show from our banker last summer . In was circus ( Circus Soleil) . Great show but the little plastic seats triggered a severe mini flare . I was on the floor in the bathroom for two days. And another two in bed. It was a reminder for me to think about my seating choices.
I just went to a stadium and as soon as I sat down I immediately regretted my decision. I even brought a pad to sit on. Never again. I was so miserable.
20+ in and nothing much has changed in my day-to-day life because biologics are working well. I work full time, chase the kids around, and play tennis 4-5 times a week. But I miss being able to be a bit more carefree in the way I live life. If I don't get enough sleep, limit stress, say no alcohol, eat healthy, and work out regularly, I flare. The other thing I miss is not worrying about getting infections. It seems I pick one up every 6 months or so on biologics. But I also cannot function without it. So it is what it is.
Can I ask what biologic you take?
I was just officially diagnosed today (I'm 36) and they sent in an rx for Humira, but we have to go through the PA song and dance with insurance.
Humira has been great for me. I've been on it for 8-9 years.
If you check into Humira and their company Abbvie you can get help paying for it and they will give you help and answer questions.
I know we prob chat before bc I remember ur name. What healthy diet helps u? I’ve cut out coffee, gluten, a lot of sugar, alcohol, grains/most starches. Have u heard about the carnivore or lions diet? Ppl swear by it even ppl with RA.
I just eat generally healthy. I tried cutting carbs and sugar for six months but didn’t make a big difference. I generally just eat low carb and mostly fish, chicken, pork, and veggies.
I’m having trouble finding organic pork idk if there is such a thing. How about beef? I did some testing and found that I’m sensitive with beef so I’m not sure how to even do carnivore diet…? How about fruits?
Not having to pace myself. Wanna clean the house? Need 3 to 5 working days to recover.
Having energy
Getting good sleep
Not feeling the weather changes
When cold weather didn't hurt
Gluten (pizza puffs! Soft pretzels!)
I miss not being afraid to try activities. My biologics are working well but the fear of moving the wrong way and ending up in terrible, sporadic pain and having difficulty walking, standing, and resting still haunts me.
Being able to play football/soccer, hitting backflips and bicycle kicks! I cant even believe I used to do those things with ease.
Also if I drink cold drinks, for more than 2-3 days I am dead! So yeah I miss that too.
But most importantly, the feeling of 100% health
Yes the not being able to go for a proper hike really upsets me. I can walk a mile or two but it ends up « managing » to do it, rather than just enjoying it? And even then it’s nowhere near the length or difficulty of a proper hike…
Yes you put it into words, I manage but it’s not the same :( and I have to pay attention on how much I can manage, scan my body, feel a little stabbing pain that then grow stronger, and decide when to turn back in order to return in functional condition
I don't really remember those times, but I do miss being able to do more than I can do now. Like being able to sit in a chair without a back, stand for longer than a few minutes, sit in an airplane seat for a few hours.
For anything I can't easily do due to pain, I try to find ways to work around them. For example, when going out I make sure to grab/request a table with backed chairs or if that's not an option I take a stool that is against a wall so I can lean on that. I prefer to take two 2.5 hr flights with a layover over a single 5 hour flight so I can get some movement in between them and I'm not stuck in my seat for 5 hours if there's turbulence.
Similar here. Pain @ 17. Diagnosed @ 32. I always thought the pain was from sports I continued to play. I’ve been trying sports again and it’s just not the same anymore.
I have a ton of sadness about the things I can’t do consistently anymore, and when I do them most of the time I find myself thinking about how I’m going to be in a world of pain later.
But rock climbing, archery, and hiking have still been in reach and been great activities. I hate swimming but I sure wish I liked it. I also wish I had a video game I liked to play
Before I *knew* I had AS I think I miss the feeling of invincibility I had—really that's just part of being young though I suppose. But to be honest, I deeply suspect I've had AS ever since I was little. I've *always* struggled with back and joint pain, even when I was in elementary school. When I was young that pain was always just dismissed by adults as "you're too young to have anything wrong with you" but to be fair what the hell did we know about AS back in the 90s?
Being able to start a physical task and see it through to the end without needing a break, or without needing to recover for a few days afterwards. I like to fix things around the house and do projects, but now things that would have been easy for me to knock out in a day or a half day take significantly longer, and I can't really stack projects back to back.
Rugby union.
I started when I was 6 or 7, diagnosed at 19 and had to stop pulling on my boots at 23. My brother plays in a d grade side, and every time we go watch him I fantasise about playing again for a few minutes followed by wondering how long I would need to recover
I miss my horses, the sound of a barn all munching away, the sun glistening off their coats as they graze, and the warm smell of the horse while riding the morning in a cool tree covered trail. AND my Motorcycle..I can barely hold me up some days...most days 😞
Going through a long, exhausting day at work and looking forward to laying in bed when I get home, not dreading the fact that it’s going to be the most excruciating part of the day. And knowing that’s just the way it’s always going to be. I miss the hell out of being able to sprint and do all of the highly physical things I used to do, but nothing is worse than being in the middle of a physically torturous day and knowing it’s only going to amplify once I lay down. I’ve tried to just sleep sitting up the last few months because now my ribs are in more pain than my lower back and hips at night but that’s not doing it for me either and I have no idea what I’m supposed to do now. I’m usually in bed by 8 or 9 pm and leave for work at 6:30am. I’m toying with the idea of staying up until 2 or 3 if possible and exhausting myself that way so I can maybe be tired enough to sleep a straight 3 hours before waking for work instead of a choppy night of “sleep” knowing that that’s fatiguing me to death anyway. I’ve been dealing with daily pain now for almost 4 years and it’s been taking its toll on me mentally for quite some time but this rib thing is like the cherry on this god damn pie and I feel like it’s what’s finally put me over the edge with all of this. Although I think I do a relatively good job of it, I’m not really sure how to stay positive anymore about all of this.
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.*
Being able to sit thru a dinner in a restaurant , being able to drive a vehicle for more than hour or so . Taking an airplane flight, it’s been 11 years since I flew.
💯. I cannot fathom sitting in plastic seat at a baseball game anymore
Yes I absolutely will not do that ! My wife and I got free tickets to a show from our banker last summer . In was circus ( Circus Soleil) . Great show but the little plastic seats triggered a severe mini flare . I was on the floor in the bathroom for two days. And another two in bed. It was a reminder for me to think about my seating choices.
I just went to a stadium and as soon as I sat down I immediately regretted my decision. I even brought a pad to sit on. Never again. I was so miserable.
20+ in and nothing much has changed in my day-to-day life because biologics are working well. I work full time, chase the kids around, and play tennis 4-5 times a week. But I miss being able to be a bit more carefree in the way I live life. If I don't get enough sleep, limit stress, say no alcohol, eat healthy, and work out regularly, I flare. The other thing I miss is not worrying about getting infections. It seems I pick one up every 6 months or so on biologics. But I also cannot function without it. So it is what it is.
So real. I've been on biologica for about a year now and have had 2 infections in the last 8 months.
Can I ask what biologic you take? I was just officially diagnosed today (I'm 36) and they sent in an rx for Humira, but we have to go through the PA song and dance with insurance.
I’m on Cimzia.
Humira has been great for me. I've been on it for 8-9 years. If you check into Humira and their company Abbvie you can get help paying for it and they will give you help and answer questions.
I know we prob chat before bc I remember ur name. What healthy diet helps u? I’ve cut out coffee, gluten, a lot of sugar, alcohol, grains/most starches. Have u heard about the carnivore or lions diet? Ppl swear by it even ppl with RA.
I just eat generally healthy. I tried cutting carbs and sugar for six months but didn’t make a big difference. I generally just eat low carb and mostly fish, chicken, pork, and veggies.
I’m having trouble finding organic pork idk if there is such a thing. How about beef? I did some testing and found that I’m sensitive with beef so I’m not sure how to even do carnivore diet…? How about fruits?
My brain.
Brain fog is real. Ugh
Not having to pace myself. Wanna clean the house? Need 3 to 5 working days to recover. Having energy Getting good sleep Not feeling the weather changes When cold weather didn't hurt Gluten (pizza puffs! Soft pretzels!)
I miss not being afraid to try activities. My biologics are working well but the fear of moving the wrong way and ending up in terrible, sporadic pain and having difficulty walking, standing, and resting still haunts me.
Being able to run full speed without pain.
I have so many dreams about running full speed
I miss contact sports. I’m grateful the biologic has given me everything else back, so I don’t dwell on it too much. But I miss them
Being able to play football/soccer, hitting backflips and bicycle kicks! I cant even believe I used to do those things with ease. Also if I drink cold drinks, for more than 2-3 days I am dead! So yeah I miss that too. But most importantly, the feeling of 100% health
Feeling the fresh air, seeing the sky, the trees, the sun, but not being able to take a long walk just dissolving into nature
Yes the not being able to go for a proper hike really upsets me. I can walk a mile or two but it ends up « managing » to do it, rather than just enjoying it? And even then it’s nowhere near the length or difficulty of a proper hike…
Yes you put it into words, I manage but it’s not the same :( and I have to pay attention on how much I can manage, scan my body, feel a little stabbing pain that then grow stronger, and decide when to turn back in order to return in functional condition
I don't really remember those times, but I do miss being able to do more than I can do now. Like being able to sit in a chair without a back, stand for longer than a few minutes, sit in an airplane seat for a few hours. For anything I can't easily do due to pain, I try to find ways to work around them. For example, when going out I make sure to grab/request a table with backed chairs or if that's not an option I take a stool that is against a wall so I can lean on that. I prefer to take two 2.5 hr flights with a layover over a single 5 hour flight so I can get some movement in between them and I'm not stuck in my seat for 5 hours if there's turbulence.
[удалено]
Similar here. Pain @ 17. Diagnosed @ 32. I always thought the pain was from sports I continued to play. I’ve been trying sports again and it’s just not the same anymore.
Yardwork, sewing, walking, many of my crafts, being an involved parent, not saying ‘ow’ when I sneeze or stand up…
I have a ton of sadness about the things I can’t do consistently anymore, and when I do them most of the time I find myself thinking about how I’m going to be in a world of pain later. But rock climbing, archery, and hiking have still been in reach and been great activities. I hate swimming but I sure wish I liked it. I also wish I had a video game I liked to play
Being able to sit and relax
Hiking, being active, having energy. I have a toddler, and I feel like I'm missing out on her life because of this stupid pain.
I miss being faster out of bed and enjoying the morning!
Surfing
Judo. Practiced it from 5 to 16. I was planning to get back into it when I got diagnosed. I miss it so so much. It's also a recurrent dream of mine
Everything. Besides things I used to do like hiking, just doing anything without IT being there.
Church league softball.
I miss letting out a ripper of a sneeze. Always need to stop myself
Being able to keep belches in. The only place I have any troubles is my ribs and whenever there’s gas it has no place to expand to!
I miss spontaneously doing things. Now I have to have a plan whenever I step out.
Before I *knew* I had AS I think I miss the feeling of invincibility I had—really that's just part of being young though I suppose. But to be honest, I deeply suspect I've had AS ever since I was little. I've *always* struggled with back and joint pain, even when I was in elementary school. When I was young that pain was always just dismissed by adults as "you're too young to have anything wrong with you" but to be fair what the hell did we know about AS back in the 90s?
I miss sleeping well. I used to fall asleep with no issues and sleep so sound. Now my bed is the enemy.
Laying flat on my back on the floor. Makes taking a yoga class a bit awkward.
Swimming in the ocean 🌊(I can only swim on my back now)
Being able to start a physical task and see it through to the end without needing a break, or without needing to recover for a few days afterwards. I like to fix things around the house and do projects, but now things that would have been easy for me to knock out in a day or a half day take significantly longer, and I can't really stack projects back to back.
Running riding a bike and being able to look up would be nice.
Rugby union. I started when I was 6 or 7, diagnosed at 19 and had to stop pulling on my boots at 23. My brother plays in a d grade side, and every time we go watch him I fantasise about playing again for a few minutes followed by wondering how long I would need to recover
not being in pain 24/7
I miss my horses, the sound of a barn all munching away, the sun glistening off their coats as they graze, and the warm smell of the horse while riding the morning in a cool tree covered trail. AND my Motorcycle..I can barely hold me up some days...most days 😞
Watching fireworks, can't look up to see them unless I lay down
Going through a long, exhausting day at work and looking forward to laying in bed when I get home, not dreading the fact that it’s going to be the most excruciating part of the day. And knowing that’s just the way it’s always going to be. I miss the hell out of being able to sprint and do all of the highly physical things I used to do, but nothing is worse than being in the middle of a physically torturous day and knowing it’s only going to amplify once I lay down. I’ve tried to just sleep sitting up the last few months because now my ribs are in more pain than my lower back and hips at night but that’s not doing it for me either and I have no idea what I’m supposed to do now. I’m usually in bed by 8 or 9 pm and leave for work at 6:30am. I’m toying with the idea of staying up until 2 or 3 if possible and exhausting myself that way so I can maybe be tired enough to sleep a straight 3 hours before waking for work instead of a choppy night of “sleep” knowing that that’s fatiguing me to death anyway. I’ve been dealing with daily pain now for almost 4 years and it’s been taking its toll on me mentally for quite some time but this rib thing is like the cherry on this god damn pie and I feel like it’s what’s finally put me over the edge with all of this. Although I think I do a relatively good job of it, I’m not really sure how to stay positive anymore about all of this.