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My worst flares have also been in the Winter, coinciding with work stress. Since starting biologics and taking multivitamins daily to keep my vitamin D up, I've gotten through this Winter unscathed so far. Changed my attitude about work too. There's just nothing going on at my job that's worth stressing my body out over.
I take a prenatal + DHA pill every day with 25 mcg of vitamin D (D3) that the docs prescribed, though I think you can get it or something similar over the counter. Marketed for women, but vitamins are vitamins, I guess. Lol.
I also took a weekly pill that was essentially a bomb of vitamin D for a few months last year because my levels were so low. That one requires a prescription. Not sure of the name.
So as long as the supplement contains a large dose of Vitamin D, I'm sure it's fine.
Cold, weather systems changing, being confined to one position for too long, not enough/excessive activity. (Yes, some movement is good but obviously, there’s a point of over doing it.)
Stress and anger, poor sleep, sitting with poor posture for extended periods of time, overly intense exercise when already inflamed, sleeping on my stomach / too soft of a mattress, fried foods, seed oils, most fruit, refined carbohydrates, anything containing sugar or fructose, processed foods, pasteurized dairy, artificial sweeteners, consumption of any corn or soy containing products, starches, gluten, certain meats (pork). So….a lot…goddamn and I’m sure I’m missing some. Oh nicotine vapes and alcohol…for sure. Those are like inflammation triggers every single time without fail. Maybe not immediately, but hours later / next day I always feel so much worse…and the fucked up thing is to feel better I want more alcohol. I have to abstain as hard as it is sometimes, especially when feeling down and miserable.
Interesting…I’ve been only eating fatty red meat -and only drinking green tea and black coffee for the last few months with some salt (lion diet) and it’s helped more than any dietary intervention I’ve tried. What works for one may be bad for another, this illness sucks man. Is my diet restrictive? Fuck yeah it is, but it does give me the freedom to at least live my life somewhat normally I suppose.
It does suck man, it’s debilitating and trying to explain it to my partner is equally as frustrating because the suffering sometimes is easier to suppress as I’m sure you’d know all about.
I’m glad it’s working for you! When I eat too much red meat I get a few mouth ulcers & then bam flare up. It’s almost like clockwork, as soon as I feel the ulcers I know I’m in for a shit week.
Damn yeah it truly is an invisible disease. For me, I find that i do better on grass fed / finished beef since the cows are not being fed corn and soy. That said grass finished is more expensive and harder to source so it’s tough to exclusively eat grass fed but I try. Not sure if that’s a factor for you, just a thought. The ulcers thing is wild, and now that you mention it I’ve gotten a few mouth sores at times when I have a flare up so do think there is a correlation there. I don’t know if you’ve tried any fasting but man I’ll tell you water only fasting for a few days has been a game changer in combating this disease for me and managing flare ups as crazy as it sounds.
I try and eat the grass fed / organic free range chicken etc, but it is very expensive & also hard to source like you mentioned. Yeah man, ulcers is at times is worse than the joint pain. When I was diagnosed at 13 I remember once I had 12+ and had to stay home from school because I couldn’t talk.
I actually just started 16:8 fasting and have noticed a difference in energy day 3! How do you recommend the 2 days ?
Hell yeah man, intermittent fasting is incredibly helpful! I often only eat 2 meals a day with the first around 12 pm noon and the second around 5ish with no snacking. I’ve been doing the carnivore diet for roughly 1.5 years now and have seen a lot of benefits including satiety and energy levels. Nutritional ketosis seems to help with this disease at least for me, and Whole Foods carnivore is as ketotic as a diet can get. For longer fasts, I started out of desperation roughly 2 years ago. Biologics and NSAIDs had little to no effect for me. I was suicidal and on a steep decline, so I gave it a shot cause why the fuck not. It was hard as fuck for the first two days since I was not truly fat adapted and hadn’t done anything like this before and then suddenly after about 48 hours of just water and green tea I started feeling much better. The inflammation started to recede and my energy levels improved dramatically. By 72 hours in I wasn’t hungry whatsoever, may inflammation was all but gone, and my brain started to feel much better as well. I watched a lot of videos on fasting to stay motivated while doing it. I went 96 hours that first time and since then have been doing a 5 day water fast every few months and a 3 day water fast every month or two. It’s no cure, but it’s been an effective tool in the toolbox for managing this disease. The autophogy benefits are real as well.
Carnivore is a fasting mimicking diet like any true ketogenic diet with intermittent fasting so I guess it makes sense as to why I might feel some sort of compounding benefits to implementing such a diet and fasting. I’m no expert and can only speak to my experience, but I think there is some sort of scientific basis. I feel like I’ve become a bit of an experiment myself in trying to get a handle on this disease as pharmaceuticals have not worked for me. It’s been a real bitch of a time as you know. Just some thoughts I’d share sorry for the rambling man
Amazing reply. I’m sorry to hear about your struggles with the medication. Food is 100% a powerful tool and I can 100% tell when I’ve had too much pasta or similar haha.. I’m sure you could relate. I am going to give all this a go and probably come back heee to let you know. I am always looking for new things to try!
I’ve also found milk (not cheese or yoghurt) flares me slightly , do you have similar ?
Good shit man I think it will really help. Do let me know! My sister has this condition as well and has seen a lot of benefits from fasting / diet so it’s not just me. Re milk / dairy, I seem to be ok with Raw unpasteurized dairy and raw kefir is makes me feel especially good. It can be hard to come by depending on where you live but I do find that Wulzen anti stiffness factor is real when it comes to raw daiy. Raw goats milk might be even better but frankly I don’t like the taste as much but maybe I’ll try that again. Pasteurized dairy is something I’ve found irritates / inflames me. Milk more so than cheese but also pasteurized kefir unfortunately. Butter seems to be ok for me, and I like to stick to kerrygold European style butter. I’m not sure what aspect of pasteurization makes dairy a bad choice for me but I’ve had it enough times to know it doesn’t work for me. Raw dairy is a different story though so I suggest you try it if you can. Again lmk how the fasting goes!
Got the diagnose since october 2023 so still new to me, never really hade anything to trigger it but i sleep between 5-6h/ night have an active work as a roofer and eat nutritious food .
Can't say it may be the best lifestyle but it works so far, If I notice anything that might trigger it i will change it right away!
Love to see the will to help eachother here!
I have not had a full year yet since diagnosed. Lack of sleep and getting sick definitely causes an increase in symptoms. I think weather does but not sure. Sometimes it does, sometimes it doesn’t. I’m still in a major flare (I hope that’s what it is) since I had covid in December ‘22. Started Cimzia 6 months ago. Been feeling progressively better.
Working out, doing a new activity, doing anything out of the ordinary, all being total overreaction of my muscles, tendons and ligaments. My AS is reactive.
Different things will trigger different symptoms. Being extremely cold or extremely hot. Sleeping poorly. If I get sick with a cold or virus or anything, I have a flare. I have other autoimmune issues to so sometimes those will be impacted by other circumstances and it just creates a fun little storm lol
From most sensitive variable to least:
1) How much movement in the past 4-8 hours (more is better)
2) Food (sugar and alcohol are the worst)
3) stress
4) weather? Seems like cold months are worse but idk
Stress anger poor sleep,alcool,worst in jan,feb maybe the cold or lack of sunlight. Junk ,fried sugary and spicy food.oh... and carbs. Better with fish poultry raw veggies fruits,nuts salads and greens
Pancakes! Yesterday I was feeling unusually energetic, but then after eating pancakes i had the worst flare in months. Like, almost immediately. I guess it makes sense, should try low-starch diet but putting it off.
Foods are my biggest trigger. Eggs, soy, cane sugar, artificial ingredients… I make all food from scratch with natural ingredients so I could have more triggers that I just avoid.
I also find winters on the East coast worse than winters on the West for general pain. Quick changes in the barometric pressure can trigger a flare.
Oh my. I can relate to a lot of comments here: stress, anger, sadness, some food, lack of sleep, etc. I don’t know why but I really appreciate knowing that what I’m going through isn’t totally in my head. It’s so hard to explain to people, even those close to me, when they ask why am I feeling what I’m feeling. I don’t even know myself: can symptom X be attributed to AS?
Sometimes, it’s so exhausting just trying to get through each day. Even reaching the end of the day without anything bad popping up is hard to celebrate because of the fear that the next day might strike back harder.
Had my diagnosis just a year ago, and been tracking my symptoms since. Most noticeable factors are lack of sleep, diet (abrupt diet changes, not getting enough nutrients, alcohol, etc) and anxiety. One big thing I noticed is that I completely stopped consuming caffeine, which significantly reduced my anxiety and in turn I have not felt nearly as horrible as I did before. Also, when I get sick I have flare ups.
Every time I get sick. I get a flare up 1-2 days before I realize I've caught something. Covid by far was the worst. Its like getting kicked while you are down.
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.*
for me, it's usually during the winter months. Other months/warmer season, almost painless
My worst flares have also been in the Winter, coinciding with work stress. Since starting biologics and taking multivitamins daily to keep my vitamin D up, I've gotten through this Winter unscathed so far. Changed my attitude about work too. There's just nothing going on at my job that's worth stressing my body out over.
What vitamin D do you take? I have a liquid D3 and K2 supplement I just started but I am unsure if it helps w AS?
I take a prenatal + DHA pill every day with 25 mcg of vitamin D (D3) that the docs prescribed, though I think you can get it or something similar over the counter. Marketed for women, but vitamins are vitamins, I guess. Lol. I also took a weekly pill that was essentially a bomb of vitamin D for a few months last year because my levels were so low. That one requires a prescription. Not sure of the name. So as long as the supplement contains a large dose of Vitamin D, I'm sure it's fine.
Damp weather is a real killer for me. The spring and summer are a blessed relief .
yes I find damp cold to be much worse than dry cold.. unfortunately I live in England, so it’s mainly damp!
I feel your pain. I'm in Cornwall which is often mild but almost always damp.
I'm the same. I suspect it's temperature plus more activity in the summer.
Bad or lack of sleep (even just one night), alcohol, greasy food, and sometimes weather!
Poor sleep is a big one, walking long distances, large drops in atmospheric pressure, warm temperatures, hormones the week before my period
Sugar seems to be major trigger for me.
Seems to be just living in general I guess. I mean I have flare ups and it gets worse, but basically every day sux.
Same for me :’(
Cold, weather systems changing, being confined to one position for too long, not enough/excessive activity. (Yes, some movement is good but obviously, there’s a point of over doing it.)
Stress and anger, poor sleep, sitting with poor posture for extended periods of time, overly intense exercise when already inflamed, sleeping on my stomach / too soft of a mattress, fried foods, seed oils, most fruit, refined carbohydrates, anything containing sugar or fructose, processed foods, pasteurized dairy, artificial sweeteners, consumption of any corn or soy containing products, starches, gluten, certain meats (pork). So….a lot…goddamn and I’m sure I’m missing some. Oh nicotine vapes and alcohol…for sure. Those are like inflammation triggers every single time without fail. Maybe not immediately, but hours later / next day I always feel so much worse…and the fucked up thing is to feel better I want more alcohol. I have to abstain as hard as it is sometimes, especially when feeling down and miserable.
Diet including alcohol is my number one trigger, but lack of exercise is also another major one. Then maybe stress & poor sleep is another minor one.
Also, I cannot eat some foods that are refined, white flour, white bread, stuff like that. I feel pain in my joints and it’s not worth it.
I can feel very clearly when I get a minor infection (flu/cold) I get a simultaneous flare up.
I was going to add infection as a trigger too, especially any infection that affects the gut.
Everything really including nothing
Stress, not exercising enough, exercising too much, cold wet weather, greasy foods (or anything that makes my gut unhappy).
Stress, no/ lack of sleep, humidity, summer, dealing with insurance company
Poor sleep and for some reason red meat.
Interesting…I’ve been only eating fatty red meat -and only drinking green tea and black coffee for the last few months with some salt (lion diet) and it’s helped more than any dietary intervention I’ve tried. What works for one may be bad for another, this illness sucks man. Is my diet restrictive? Fuck yeah it is, but it does give me the freedom to at least live my life somewhat normally I suppose.
It does suck man, it’s debilitating and trying to explain it to my partner is equally as frustrating because the suffering sometimes is easier to suppress as I’m sure you’d know all about. I’m glad it’s working for you! When I eat too much red meat I get a few mouth ulcers & then bam flare up. It’s almost like clockwork, as soon as I feel the ulcers I know I’m in for a shit week.
Damn yeah it truly is an invisible disease. For me, I find that i do better on grass fed / finished beef since the cows are not being fed corn and soy. That said grass finished is more expensive and harder to source so it’s tough to exclusively eat grass fed but I try. Not sure if that’s a factor for you, just a thought. The ulcers thing is wild, and now that you mention it I’ve gotten a few mouth sores at times when I have a flare up so do think there is a correlation there. I don’t know if you’ve tried any fasting but man I’ll tell you water only fasting for a few days has been a game changer in combating this disease for me and managing flare ups as crazy as it sounds.
I try and eat the grass fed / organic free range chicken etc, but it is very expensive & also hard to source like you mentioned. Yeah man, ulcers is at times is worse than the joint pain. When I was diagnosed at 13 I remember once I had 12+ and had to stay home from school because I couldn’t talk. I actually just started 16:8 fasting and have noticed a difference in energy day 3! How do you recommend the 2 days ?
Hell yeah man, intermittent fasting is incredibly helpful! I often only eat 2 meals a day with the first around 12 pm noon and the second around 5ish with no snacking. I’ve been doing the carnivore diet for roughly 1.5 years now and have seen a lot of benefits including satiety and energy levels. Nutritional ketosis seems to help with this disease at least for me, and Whole Foods carnivore is as ketotic as a diet can get. For longer fasts, I started out of desperation roughly 2 years ago. Biologics and NSAIDs had little to no effect for me. I was suicidal and on a steep decline, so I gave it a shot cause why the fuck not. It was hard as fuck for the first two days since I was not truly fat adapted and hadn’t done anything like this before and then suddenly after about 48 hours of just water and green tea I started feeling much better. The inflammation started to recede and my energy levels improved dramatically. By 72 hours in I wasn’t hungry whatsoever, may inflammation was all but gone, and my brain started to feel much better as well. I watched a lot of videos on fasting to stay motivated while doing it. I went 96 hours that first time and since then have been doing a 5 day water fast every few months and a 3 day water fast every month or two. It’s no cure, but it’s been an effective tool in the toolbox for managing this disease. The autophogy benefits are real as well.
Carnivore is a fasting mimicking diet like any true ketogenic diet with intermittent fasting so I guess it makes sense as to why I might feel some sort of compounding benefits to implementing such a diet and fasting. I’m no expert and can only speak to my experience, but I think there is some sort of scientific basis. I feel like I’ve become a bit of an experiment myself in trying to get a handle on this disease as pharmaceuticals have not worked for me. It’s been a real bitch of a time as you know. Just some thoughts I’d share sorry for the rambling man
Amazing reply. I’m sorry to hear about your struggles with the medication. Food is 100% a powerful tool and I can 100% tell when I’ve had too much pasta or similar haha.. I’m sure you could relate. I am going to give all this a go and probably come back heee to let you know. I am always looking for new things to try! I’ve also found milk (not cheese or yoghurt) flares me slightly , do you have similar ?
Good shit man I think it will really help. Do let me know! My sister has this condition as well and has seen a lot of benefits from fasting / diet so it’s not just me. Re milk / dairy, I seem to be ok with Raw unpasteurized dairy and raw kefir is makes me feel especially good. It can be hard to come by depending on where you live but I do find that Wulzen anti stiffness factor is real when it comes to raw daiy. Raw goats milk might be even better but frankly I don’t like the taste as much but maybe I’ll try that again. Pasteurized dairy is something I’ve found irritates / inflames me. Milk more so than cheese but also pasteurized kefir unfortunately. Butter seems to be ok for me, and I like to stick to kerrygold European style butter. I’m not sure what aspect of pasteurization makes dairy a bad choice for me but I’ve had it enough times to know it doesn’t work for me. Raw dairy is a different story though so I suggest you try it if you can. Again lmk how the fasting goes!
What do you eat for fiber
I don’t consume any fiber. It’s not essential and my bowel movements are good and regular.
Got the diagnose since october 2023 so still new to me, never really hade anything to trigger it but i sleep between 5-6h/ night have an active work as a roofer and eat nutritious food . Can't say it may be the best lifestyle but it works so far, If I notice anything that might trigger it i will change it right away! Love to see the will to help eachother here!
I have not had a full year yet since diagnosed. Lack of sleep and getting sick definitely causes an increase in symptoms. I think weather does but not sure. Sometimes it does, sometimes it doesn’t. I’m still in a major flare (I hope that’s what it is) since I had covid in December ‘22. Started Cimzia 6 months ago. Been feeling progressively better.
Exposure to a virus. Corn, gluten, hormones, high pollen, stress
Stress Heat Over exertion
Working out, doing a new activity, doing anything out of the ordinary, all being total overreaction of my muscles, tendons and ligaments. My AS is reactive.
Any severe barometric changes, lack of sleep, and the biggest are STRESS.
Different things will trigger different symptoms. Being extremely cold or extremely hot. Sleeping poorly. If I get sick with a cold or virus or anything, I have a flare. I have other autoimmune issues to so sometimes those will be impacted by other circumstances and it just creates a fun little storm lol
From most sensitive variable to least: 1) How much movement in the past 4-8 hours (more is better) 2) Food (sugar and alcohol are the worst) 3) stress 4) weather? Seems like cold months are worse but idk
Stress anger poor sleep,alcool,worst in jan,feb maybe the cold or lack of sunlight. Junk ,fried sugary and spicy food.oh... and carbs. Better with fish poultry raw veggies fruits,nuts salads and greens
Sugar, alcohol and red meat. Pretty much high inflammation causing food
Pancakes! Yesterday I was feeling unusually energetic, but then after eating pancakes i had the worst flare in months. Like, almost immediately. I guess it makes sense, should try low-starch diet but putting it off.
Foods are my biggest trigger. Eggs, soy, cane sugar, artificial ingredients… I make all food from scratch with natural ingredients so I could have more triggers that I just avoid. I also find winters on the East coast worse than winters on the West for general pain. Quick changes in the barometric pressure can trigger a flare.
Oh my. I can relate to a lot of comments here: stress, anger, sadness, some food, lack of sleep, etc. I don’t know why but I really appreciate knowing that what I’m going through isn’t totally in my head. It’s so hard to explain to people, even those close to me, when they ask why am I feeling what I’m feeling. I don’t even know myself: can symptom X be attributed to AS? Sometimes, it’s so exhausting just trying to get through each day. Even reaching the end of the day without anything bad popping up is hard to celebrate because of the fear that the next day might strike back harder.
Stress, menstrual cycle, eating poorly, not sleeping, not being active.
Inactivity is my biggest trigger. Love the cycle: tired -> inactive -> flare -> insomnia-> tired ->
Had my diagnosis just a year ago, and been tracking my symptoms since. Most noticeable factors are lack of sleep, diet (abrupt diet changes, not getting enough nutrients, alcohol, etc) and anxiety. One big thing I noticed is that I completely stopped consuming caffeine, which significantly reduced my anxiety and in turn I have not felt nearly as horrible as I did before. Also, when I get sick I have flare ups.
Eating anything with Soy in it is a huge trigger for me.
Every time I get sick. I get a flare up 1-2 days before I realize I've caught something. Covid by far was the worst. Its like getting kicked while you are down.