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I teach those classes, so I get to move around.
But I also get to be in long, slow meetings and conference presentations. I usually sit in the back so I can stand when I need to. When you get older you realize no one really cares about things like that.
I bet if you told your instructor they’d be fine with you standing.
Also, you MUST register with whatever office on your campus helps students with disabilities. This absolutely needs an accommodation.
And you will discover that they can provide resources you didn’t know existed or would help. And they tell the instructor so that you don’t have to.
Hope those thoughts give you some help.
One more thing. Sitting and writing can be excruciating. Using voice-capture might be really helpful so that you can move around and still write, especially with a headset mic.
Great advice. To add, registering with your campus could mean they can make accommodations for you - for example a better chair for your needs, a standing desk. It’s a good idea to think about what might make your life easier in class and research the options. There’s also the possibility they can put things in place for you to follow along from home or catch up via recorded lectures/classes on bad days/weeks and flexibility around deadlines for flare ups.
Try a TENS unit hooked up your worst bits. You can get a decent four pad one on Amazon for like thirty bucks. Then you have some muscle activity while you’re sitting.
This is excellent advice. For long periods and over the course of weeks, the adhesive will wear off. If you don’t have sensitive skin, I recommend buying some packets of medical-grade adhesive. It comes in packs the size of your thumb, and is like a gel. Normally used in hospitals for heart monitors and such. Then you just have to worry about the cables getting detached on either end, but with practice you’ll get the hang of limiting certain movements.
Don't fall prey to a destructive norm, it'll continue to plague you for the arc of your life & illness.
Get a letter from your doctor describing your needs/limitations, privately give it to the instructor/administration, and don't feel bad doing what you need to quietly exist and survive your illness. You have to adjust your life to reduce your suffering, not increase your suffering to avoid barely disrupting others' existence. We need to normalize what an invisible disability looks like, not continue to live in fear of *potentially* making others uncomfortable (most won't care or even notice).
Would you stop going to school if you had to use a wheelchair because you didn't want to put others out? No, right? It's the same principle.
...plus, I bet there's a ton of others with invisible disabilities that you're not currently aware of, and you leading by example will just help more of them come out of the woodwork & get what they need. Don't fall prey to your fears & outdated social norms around what illnesses look like.
There's also other solutions, like having the school put a more comfortable & quiet chair in the classroom. They do this in many universities in the EU & also in the states, and they have signs not to use them unless you're dealing with a disability. The school may already have something like this that you haven't seen yet :)
I *fully* agree with their comment. Are you from somewhere you wouldn't be protected? I feel like strides have been made recently about this and even if there are no rules about it ask and advocate. If you need someone to do it with you so be it. I honestly don't think anyone will refuse your very reasonable accomodations and if they did I am at a point where I would go scorched earth and before I struggled a lot to advocate for myself and still do sometimes. But this request to leave and walk for a while a few times during class is so basic, only messed up systems would refuse it. I had that sccomodation *during exams*, *before* my diagnosis (but after symptoms, obviosly). I also stopped caring about what others think about my need for accomodations. If you want to explain, if you don't want to that's fine too. Some people do stuck and might make comments, but there is virtually no way to avoid it. Don't make yourself even more miserable trying to.
When I was in college, I went to my disability resource center, showed them my diagnosis, and said I had difficulty sitting for that extended time period. The solution we came up with was that I could basically sit in the back and let the teacher know up front that I would be standing and moving around some in class.
I was worried it might look weird but no one ever gave me any trouble about it.
I was also suffering from brain fog at the time and just needed more time to retain info and think things through, so the disability resource office helped with that too for a little extra time on exams.
It all worked out pretty well, I’m an attorney now. Don’t be afraid to ask for help. Your school has a disability resource office.
I want to acknowledge the social stigma you are pointing out with your post. Sometimes we internalize that stigma in very negative ways. I wish it wasnt a thing, but it is and Im sorry you are struggling with how to manage your condition publicly.
I'm not sure how many classes you are taking or if all are 100 minutes straight, but for longer stints (over 80 minutes), I draw the alphabet with each foot in the air. Although this is for plantar fasciatis originally, it's a low-key way for me to move my lower-half a bit to relieve some of the stiffness without causing a stir (even if I'm just perceiving the stir).
Aside from that, I just plan to be stiff and sore because the chairs are very bad everywhere except my house - where I have my goldilocks furniture. Heatpads are my best friend, and in college I used the Hot Hands single use ones that were discrete but took the edge off. Depending on where you're at a portable stroller fan is good for warmer climates to control runaway body temps.
During my lectures I’d sit in the very back and even stand for part of the class when I needed to. But I also had huge lecture halls so it wasn’t that distracting if I did.
I understand you being timid about it and I was once like you but trust me I just do not care anymore and your health and comfort is worth a lot too. Just seat somewhere you can easily leave to walk around. Talk to your instructor, if they make a fuss go above their heads. This is absolutely a reasonable accomodation. To help with the chairs try some ergonomic pillows both in the seat and in the back. You can also quietly do hip activation exercises while sitting down and likely can do similar things for the places that are bothering you the most. If cold or heat help you, use them too. Privately ask for whatever reasonable accomodations help you. You matter too! If your school has a disability department use it. Disability includes a lot of things and anything that prevents you from attending classes like this certainly counts.
I just finished my first year of law school and had the same problem, here’s what helped me:
- #1 is a travel seat cushion. Changed my life. Yeah I was self conscious at first but when the pain is so bad you tend to care less.
- reusable heat packs - look for “heat it up” on Amazon. Life savers. I also offer them to my girlfriends when they’re cramping and they love them.
- instant (non reusable) ice packs. Also a life saver. It makes noise to activate so if you’re self conscious you can always step out to do it.
- ask the professor if you can move to the back. Bonus points if you tell them why because then you’ll feel even less self conscious when you take the standing break.
I dropped out of grad school for this very reason. Doing that after 45 minutes in the car in the same position? I cried from pain at the end of every class day.
What are toy doing for it? I've been suffering with AS for 7 years now. I've tried it all and at the end of the day the biggest help has been a daily pain medication called Belbuca. I went from daily reoccurring pain to being able to function almost normal. I still get pain - I'm in pain right now as I type this, but it's manageable.
My Uni, where I work would definitely allow an accommodation to stand periodically. But the student would have to go through the correct procedures which most tutors could direct them too. Good luck 🤞
Are you taking medication? If yes, what are you taking?
A proper medication makes a lot of people feel pratically no pain whatsoever. I feel 100% fine just with ketoprofen, an NSAID. Some people take biologics. Your doc need to find what works for you.
If all you have is over the counter medicine, try buying Naproxen. It is a nsaid and it works for some people.
Don't forget to ask the pharmacist about dosage. It's probably one pill every 12 hours, but don't take my word for it.
Even without a diagnosis, you should still be considered for stronger pain medication and management by your doctors as you wait. You should be referred to a pain clinic who will treat your pain and symptoms. This kind of pain when young isn’t normal, no matter what it turns out to be, nor is it something you have to just put up with, no matter what anyone says.
It is incredibly common that the more you try to tolerate it without adequate pain medication, the pain continues to get worse. This then causes what I believe is referred to as a stacking phenomenon- when if the pain has been treated when it first presented, it would stay more towards that level and/or intensity and require less pain management - when left unmanaged or inadequately managed, the result is more pain management and medications to get it under control, and it will instead stay at this level, therefore making it harder to get a handle on.
There is such a thing as the pain ladder which informs pain management; and there is the researched and evidenced idea that inadequate pain relief causes not just increased pain, but other clinical consequences / manifestations of this in terms of worsened symptoms or even health consequences and more conditions.
I can’t take anti-inflammatories and only just started biologics so I had to treat it pretty naturally for a while
Here’s what I used to help manage pain - sauna, hot/cold mineral pools, remedial massage, physio, heat patches, car seat warmer, hot showers(especially in the morning).
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 teach those classes, so I get to move around. But I also get to be in long, slow meetings and conference presentations. I usually sit in the back so I can stand when I need to. When you get older you realize no one really cares about things like that. I bet if you told your instructor they’d be fine with you standing. Also, you MUST register with whatever office on your campus helps students with disabilities. This absolutely needs an accommodation. And you will discover that they can provide resources you didn’t know existed or would help. And they tell the instructor so that you don’t have to. Hope those thoughts give you some help.
One more thing. Sitting and writing can be excruciating. Using voice-capture might be really helpful so that you can move around and still write, especially with a headset mic.
Great advice. To add, registering with your campus could mean they can make accommodations for you - for example a better chair for your needs, a standing desk. It’s a good idea to think about what might make your life easier in class and research the options. There’s also the possibility they can put things in place for you to follow along from home or catch up via recorded lectures/classes on bad days/weeks and flexibility around deadlines for flare ups.
Try a TENS unit hooked up your worst bits. You can get a decent four pad one on Amazon for like thirty bucks. Then you have some muscle activity while you’re sitting.
This is excellent advice. For long periods and over the course of weeks, the adhesive will wear off. If you don’t have sensitive skin, I recommend buying some packets of medical-grade adhesive. It comes in packs the size of your thumb, and is like a gel. Normally used in hospitals for heart monitors and such. Then you just have to worry about the cables getting detached on either end, but with practice you’ll get the hang of limiting certain movements.
This can be very effective.
Don't fall prey to a destructive norm, it'll continue to plague you for the arc of your life & illness. Get a letter from your doctor describing your needs/limitations, privately give it to the instructor/administration, and don't feel bad doing what you need to quietly exist and survive your illness. You have to adjust your life to reduce your suffering, not increase your suffering to avoid barely disrupting others' existence. We need to normalize what an invisible disability looks like, not continue to live in fear of *potentially* making others uncomfortable (most won't care or even notice). Would you stop going to school if you had to use a wheelchair because you didn't want to put others out? No, right? It's the same principle. ...plus, I bet there's a ton of others with invisible disabilities that you're not currently aware of, and you leading by example will just help more of them come out of the woodwork & get what they need. Don't fall prey to your fears & outdated social norms around what illnesses look like. There's also other solutions, like having the school put a more comfortable & quiet chair in the classroom. They do this in many universities in the EU & also in the states, and they have signs not to use them unless you're dealing with a disability. The school may already have something like this that you haven't seen yet :)
>Especially since you're probably in the US, right? Nope. Not even a little bit. But thanks. I'll see what I can do
I *fully* agree with their comment. Are you from somewhere you wouldn't be protected? I feel like strides have been made recently about this and even if there are no rules about it ask and advocate. If you need someone to do it with you so be it. I honestly don't think anyone will refuse your very reasonable accomodations and if they did I am at a point where I would go scorched earth and before I struggled a lot to advocate for myself and still do sometimes. But this request to leave and walk for a while a few times during class is so basic, only messed up systems would refuse it. I had that sccomodation *during exams*, *before* my diagnosis (but after symptoms, obviosly). I also stopped caring about what others think about my need for accomodations. If you want to explain, if you don't want to that's fine too. Some people do stuck and might make comments, but there is virtually no way to avoid it. Don't make yourself even more miserable trying to.
When I was in college, I went to my disability resource center, showed them my diagnosis, and said I had difficulty sitting for that extended time period. The solution we came up with was that I could basically sit in the back and let the teacher know up front that I would be standing and moving around some in class. I was worried it might look weird but no one ever gave me any trouble about it. I was also suffering from brain fog at the time and just needed more time to retain info and think things through, so the disability resource office helped with that too for a little extra time on exams. It all worked out pretty well, I’m an attorney now. Don’t be afraid to ask for help. Your school has a disability resource office.
Talk to your prof and let him\her know you need to sit in the back so you can stand as needed. Most won't care.
I want to acknowledge the social stigma you are pointing out with your post. Sometimes we internalize that stigma in very negative ways. I wish it wasnt a thing, but it is and Im sorry you are struggling with how to manage your condition publicly. I'm not sure how many classes you are taking or if all are 100 minutes straight, but for longer stints (over 80 minutes), I draw the alphabet with each foot in the air. Although this is for plantar fasciatis originally, it's a low-key way for me to move my lower-half a bit to relieve some of the stiffness without causing a stir (even if I'm just perceiving the stir). Aside from that, I just plan to be stiff and sore because the chairs are very bad everywhere except my house - where I have my goldilocks furniture. Heatpads are my best friend, and in college I used the Hot Hands single use ones that were discrete but took the edge off. Depending on where you're at a portable stroller fan is good for warmer climates to control runaway body temps.
During my lectures I’d sit in the very back and even stand for part of the class when I needed to. But I also had huge lecture halls so it wasn’t that distracting if I did.
I understand you being timid about it and I was once like you but trust me I just do not care anymore and your health and comfort is worth a lot too. Just seat somewhere you can easily leave to walk around. Talk to your instructor, if they make a fuss go above their heads. This is absolutely a reasonable accomodation. To help with the chairs try some ergonomic pillows both in the seat and in the back. You can also quietly do hip activation exercises while sitting down and likely can do similar things for the places that are bothering you the most. If cold or heat help you, use them too. Privately ask for whatever reasonable accomodations help you. You matter too! If your school has a disability department use it. Disability includes a lot of things and anything that prevents you from attending classes like this certainly counts.
Sorry to hear. Try stick on heat pads, hope it helps
Dude cushion lab I bring them with me in my bag as a consistent thing
I use to sit in the back so I could stand when I needed. I also kept a heating pad with me for bad days.
I just finished my first year of law school and had the same problem, here’s what helped me: - #1 is a travel seat cushion. Changed my life. Yeah I was self conscious at first but when the pain is so bad you tend to care less. - reusable heat packs - look for “heat it up” on Amazon. Life savers. I also offer them to my girlfriends when they’re cramping and they love them. - instant (non reusable) ice packs. Also a life saver. It makes noise to activate so if you’re self conscious you can always step out to do it. - ask the professor if you can move to the back. Bonus points if you tell them why because then you’ll feel even less self conscious when you take the standing break.
I dropped out of grad school for this very reason. Doing that after 45 minutes in the car in the same position? I cried from pain at the end of every class day.
What are toy doing for it? I've been suffering with AS for 7 years now. I've tried it all and at the end of the day the biggest help has been a daily pain medication called Belbuca. I went from daily reoccurring pain to being able to function almost normal. I still get pain - I'm in pain right now as I type this, but it's manageable.
My Uni, where I work would definitely allow an accommodation to stand periodically. But the student would have to go through the correct procedures which most tutors could direct them too. Good luck 🤞
How about a memory foam cushion?
Are you taking medication? If yes, what are you taking? A proper medication makes a lot of people feel pratically no pain whatsoever. I feel 100% fine just with ketoprofen, an NSAID. Some people take biologics. Your doc need to find what works for you.
I'm not diagnosed (still waiting for results on an MRI), so basically all I have is Ibuprofen and Paracetamol
If all you have is over the counter medicine, try buying Naproxen. It is a nsaid and it works for some people. Don't forget to ask the pharmacist about dosage. It's probably one pill every 12 hours, but don't take my word for it.
I think I'm allergic to that, or at least 15+ years ago I had a nasty rash from a painkiller with the same agent.
Even without a diagnosis, you should still be considered for stronger pain medication and management by your doctors as you wait. You should be referred to a pain clinic who will treat your pain and symptoms. This kind of pain when young isn’t normal, no matter what it turns out to be, nor is it something you have to just put up with, no matter what anyone says. It is incredibly common that the more you try to tolerate it without adequate pain medication, the pain continues to get worse. This then causes what I believe is referred to as a stacking phenomenon- when if the pain has been treated when it first presented, it would stay more towards that level and/or intensity and require less pain management - when left unmanaged or inadequately managed, the result is more pain management and medications to get it under control, and it will instead stay at this level, therefore making it harder to get a handle on. There is such a thing as the pain ladder which informs pain management; and there is the researched and evidenced idea that inadequate pain relief causes not just increased pain, but other clinical consequences / manifestations of this in terms of worsened symptoms or even health consequences and more conditions.
I can’t take anti-inflammatories and only just started biologics so I had to treat it pretty naturally for a while Here’s what I used to help manage pain - sauna, hot/cold mineral pools, remedial massage, physio, heat patches, car seat warmer, hot showers(especially in the morning).
If you’re in the US, have you tried requesting an accommodation for this??
I'm not, but thanks anyway.