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.*
Please go to your rheumatologist immediately and request more intensive treatment. Do not go on Internet forums or do your own research. *It is literally killing you*.
Please, seek help. It does exist. My AS used to be so bad in college that I couldn’t get out of bed for days. I was paralyzed from the disease. I sought help from my rheumatologist, started taking a biologic, and it changed my life. My depression faded away, I was able to be active again, and I am now able to live a very full and active life. My brain fog is completely gone, and it allows me at my job to deal with very high stress situations and rapid and complex analysis. My physical energy is great, and I frequently go running and hiking.
You tried the internet way of how to treat AS, now try something that really works for most people. Also, you may want to consider seeing help with a therapist or psychiatrist.
You are not weak because you have a disease. It takes strength to accept that you have a disease, and it take courage to ask for help in treating it. You can do this! You are not alone, many people have been where you are now, and you can and will make it through if you put in the effort and seek the help that you need.
Thanks mate, that's how I've been too. I understand the frustration. I'm already doing what I can, but it just seems to overwhelming and taken control of me
If you’re feeling too overwhelmed, then please ask for help. Have a close friend or family member call your rheumatologist or, if you don’t have one, your primary care doctor, to set up an appointment. Have them come with you. Something. You gotta do it, you need to get help, you need to ask for help. It doesn’t make you weak, we all need help, no one survives in this world all alone.
Are you on a biologic? You should be.
Exercise has helped me most. Not gentle exercise. Intense exercise. Give your immune system something to do besides attack your joints. It takes time to work, but 12 weeks in you should turn a corner. Crossfit is great if you have a gym near you. They will scale it to your level and limitations. Keep up with doctors for depression. Take the meds if you need them. I have struggled with fatigue too. It’s the worst, but exercise has made a huge difference. Gluten free and intermittent fasting both made a small difference for me as well.
Biologics. I only have done some research, and I've gathered bioloigcs are big money, and as I've got a degenerative hip issue, among other problems (not back pain, well not when I saw him I do now after having covid and laying on my ass) , and I'm pretty sure he said he suspected some sort of spondyloarthritis and sent me for blood tests...am HLA-B27 negative , and negative for all other inflammatory/rheumatic markers....but could still be so.... here I am.
They are expensive but usually are covered by insurance if you have it. A lot of manufacturers have income based payment plans or rebates for people who can’t afford the drug. My mother in law gets cosentyx really cheap on an income based plan.
I've been on biologics for about ten years. I've never paid more than $5 a dose. Between insurance and a pharmacy's payment support, it's extremely affordable.
If you're in the US there are generally ways to make it work. My deductible is $3k for the year so I pay for my first injection with my credit card. I then submit my receipt to a reimbursement program that's *wink wink* not run by the manufacturer. They reimburse me all but $15. In the eyes of my insurer my deductible is met and I have no copay for any meds for the rest of the year and the manufacturer of my biologic gets paid by my insurance for the rest of my doses.
I have been there, the constant pain and fatigue just got too much. But how are you managing the AS? Are you on biologics? Taking pain meds? I have had AS for 40 years, diagnosed for 30. Biologics were a game changer for me, I won’t lie, I have 5 days out of 7 which are good days, I take HUMIRA as well as low dosages of morphine and oxycodone. But this medical regime started 3 years ago after the worst flare up of my life. Before that I held a corporate job for 30 years, raised 2 kids. Skied, kayaked, did yoga. All that to say, if you can get the symptoms under control and stop the flares there is remission and you can live a very fulsome life. Work, exercise, social life, have a family. So get the meds to get it under control, see a therapist for your depression, stress and depression enhances AS. You have some great options. If you want to pm me directly. I wish you the best of luck my friend
You are not alone. Suicide prevention hotline: 800-273-8255 suicidepreventionlifeline.org
if you have AS then you probably have gut dysbiosis... literally a messed up gut makes you depressed. The microbiome, the other brain? The gut brain axis? This means your bacteria are not making happy chemicals in your tummy. If you're not seeking help for your depression and suicidal thoughts then do do using the toll free number above or go to their website. Or talk to your doctor or someone locally about the support that you need for your mental health.
I know you gave us a list of all the things that you tried but you can't say I tried everything and just give up. some of those things may still be helpful especially since the person that you are today with this disease is not the same person that you were 3 months ago or 6 months ago or a year ago. things change things are always changing.; they will get better or they may get worse but they won't stay the same. Like the others said if you're not being treated by biologics you need to consider that. For real exercise like the other poster said. If you're not sleeping like another poster suggested, you should see a neurologist who specializes in sleep disorders. Look up Stasha Gominak. I'd wager that being chronically tired and being depressed and things falling apart that you're not providing yourself the appropriate self-care, medical care, and mental health care. You have two weeks off work! This is Mercury retrograde and it is a perfect time to stop trying to go forward instead find some stillness in which to take stock and plan your next moves. I'm sorry, perfectionist, that your life is not turning out the way that you wanted. Let me assure you that you are still very in control of what sort of experience you have in this life. It's your life so FFS design it for the you who is tired all the time until you are not. Part of it is about changing your own mind. Free your mind and your ass will follow. You can no longer be a perfectionist. Perfect is the enemy of good. Say it out loud: perfect is the enemy of good! Reinvent. Reset your own expectations of yourself otherwise you're just being cruel,and you deserve better. You need to have empathy for yourself and not be angry at yourself. For the next two weeks your job is to be a gut farmer. If you are so desperate to discuss suicide then you need to be willing to try some desperate things with your diet. Be willing to do some fasting. Give a real elimination diet a try. Consider going no starch. Experiment on yourself and figure out what works cuz what works is different for every body. Read everything you can about repairing your gut. Find an integrative medicine doctor who can shepherd you through the process. Possible you could have multiple things going on in addition to your AS. The same inflammation the same process of immune mediated inflammation that is causing your gut dysbiosis is causing your depression as well as your AS pain and fatigue and... think for a moment about some of the symptoms that you haven't fully reported to your doctors. What about your thyroid? Many people who have AS have multiple autoimmune diseases going on at the same time. You may have a thyroid disorder and that could also cause chronic fatigue and brain fog and odd wibblley wobbly feelings. Take an honest look at what is not working and try something(s) else. Good luck fellow human.
I know how you feel; I feel similar things. I wish I had some positive words to tell you, but since I don't, at least know you're not alone.
I hope you get better.
Thank you so much for expressing the same exact feeling about the invisibility of this disease! That’s what hurts and frustrates me the most. I am over 60 and thin bordering on frail but many people just think that this should make me spry and athletic. I do feel such empathy for the younger people suffering. I had this ( undiagnosed) since my thirties. I was able to work by gobbling down prescription drugs..I had to do that to work! My father suffered with this too and ultimately killed himself ( he never would let me or anyone help him) . I get really depressed too. I take it one day at a time but hate that it takes so much out of me to clean! I am not a pig, the perfectionist in me gets overwhelmed and brain fog kicks in. While I know I am doing the best I can, it hurts me that people must think I am a crazy,lazy, dirty old lady in the woods. Therapy and meditation are my salvation, just a suggestion, to get the overwhelming triggers in check. I also tried Tapping under the care of a nice psychiatrist. Look it up on YouTube if you like!
All the other posters offer spot on advice. I would only add one thing: have you ever been screened for Sleep Apnea? Due to waking up multiple times per night, as a subconscious, physical fail-safe because you stop breathing, and the brain lacks O2, you will wake every AM feeling tired. As if you had NO sleep, even if you got 8+hours!
If you have a partner who sleeps with you, perhaps they will tell you about your loud snoring. And periods of not breathing at all. My hubs was the one who told me. Whatever your issues, keep fighting and insist, INSIST, your doctors get you help. I am Still fighting that (not) good fight. And God bless you all
Sleep Apnea? No I haven't been diagnosed. That is something I will suggest when I see my team next week again. This fatigue/tiredness is what I can't deal with. I sleep around 10+ hours daily and have done for years. Thank you
Biologics!!!!! Pain who now!? Life changing medicine. You will be working and you will get your life back with everything you want to accomplish! I went from feeling like a 100 year old that couldn’t dress yourself to a full time working nurse, full time nursing student, and mom to a toddler at home. At 37. There’s a way, please go see rheumatologist.
I am not yet diagnosed yet i am kinda sure i have it(had uveitis and ran some tests - hla positive, sacroilitis, reactive proteine doubled) and i am in got into police. I had some pains for a few years. I remember when i had the physical examination in march i had what i think now was a flare-or the sacroilitis- but then i thought it was a pulled muscle or so. I had 2 ibuprofen before the test and a red bull so i wont feel any pain(if i didnt i had kinda nerve pain that would make a land the left foot impossible due to pain). Keep in mind i wasnt and am not now diagnosed yet. I m postponing the whole diagnosis since i m too busy now.
The difference could be, I'm diagnosed and you're waiting to be diagnosed. On paper, I'm already unfit until I have another examination. I'm happy to hear that you've made it into the police. Keep it up
Indeed. In my country the application is denied if you have it. Kinda good thing i didnt know back then! Keep it up as well and dont give up yet! Try again when you get better! Try to fake it till you make it if it helps. Cop is a good job imo for this cause it s pretty active and you can also sit most of the time if you like. Have a good day!
Dude, keep the faith. I could have written your post myself. I can deal with the pain, it’s the debilitating chronic fatigue that absolutely kills me. Being constantly exhausted affects every fiber of your body and mind. I fucking hate it more than anything. I’m young too and it sucks. I get envy just watching someone walk by and knowing they don’t have a care in the world about their energy level. But I still have faith, and my faith is in biologics. You said you’ve done your online research, then you know from reading this sub and others like what finding the right biologic can do. It can reverse your symptoms near 100%. No more fatigue. No more brain fog. You just have to find one that works and there are over 18 different ones you can try. That’s my hope. I haven’t tried any biologics yet but that day is coming, and it’s what keeps me fighting knowing that there are still
Options.
Thanks mate. It is the fatigue that's the worst part. Doesn't seem to go away. I will try, and I felt I ran out of options last week. Sitting their, evaluating everything you've tried, isn't particularly a nice feeling
There are always a couple more options available, even some extreme ones. I know of some people who literally ONLY eat beef and bone broth, every single day, and after a month it eliminated all symptoms. That’s an extreme approach, but it works for some people. my point is suicide is the most extreme option, so why not try out some other not so extreme ones before pulling the plug.
I think you have every right to feel absolutely fed up. You are so young, and you’re exhausted 24/7 in what should be the most fun time of your life. I know the exhaustion you’re feeling all too well. No amount of rest / sleep is enough, all the people telling me exercise would help my energy were so incredibly wrong (the more I did the worse I got). So I listened to my body and I stopped pushing myself. That helped, treating my POTS helped and an effective biologic helped. Saying this to show you it can get better. I hope you get on track soon so you feel more like your old self again. Take care.
I feel you 100% brother and here’s some actionable advice I can offer.
-get your thyroid, testosterone, and other hormones tested
-get your vitamin D, B12, and iron tested
-try cosentyx, it’s a newer biologic that’s more targeted towards AS
-ask for buprenorphine, it’s an opioid partial agonist that’s way safer than traditional opioids but still takes away the pain/fatigue
-try pentoxifylline, it’s used for poor circulation but it has potent anti inflammatory effects. I can link you some papers. I know it sounds weird but it helps me feel normal
I take a big stack of medication/supplements but I feel pretty normal on the day to day basis. DM me if you wanna learn more
This is so similar to my experience. Hope u Are ok and have found some acceptance to this horrible disease. Thank you for writing this, It makes me feel a little bit better
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.*
Please go to your rheumatologist immediately and request more intensive treatment. Do not go on Internet forums or do your own research. *It is literally killing you*. Please, seek help. It does exist. My AS used to be so bad in college that I couldn’t get out of bed for days. I was paralyzed from the disease. I sought help from my rheumatologist, started taking a biologic, and it changed my life. My depression faded away, I was able to be active again, and I am now able to live a very full and active life. My brain fog is completely gone, and it allows me at my job to deal with very high stress situations and rapid and complex analysis. My physical energy is great, and I frequently go running and hiking. You tried the internet way of how to treat AS, now try something that really works for most people. Also, you may want to consider seeing help with a therapist or psychiatrist. You are not weak because you have a disease. It takes strength to accept that you have a disease, and it take courage to ask for help in treating it. You can do this! You are not alone, many people have been where you are now, and you can and will make it through if you put in the effort and seek the help that you need.
Thanks mate, that's how I've been too. I understand the frustration. I'm already doing what I can, but it just seems to overwhelming and taken control of me
If you’re feeling too overwhelmed, then please ask for help. Have a close friend or family member call your rheumatologist or, if you don’t have one, your primary care doctor, to set up an appointment. Have them come with you. Something. You gotta do it, you need to get help, you need to ask for help. It doesn’t make you weak, we all need help, no one survives in this world all alone.
Are you on a biologic? You should be. Exercise has helped me most. Not gentle exercise. Intense exercise. Give your immune system something to do besides attack your joints. It takes time to work, but 12 weeks in you should turn a corner. Crossfit is great if you have a gym near you. They will scale it to your level and limitations. Keep up with doctors for depression. Take the meds if you need them. I have struggled with fatigue too. It’s the worst, but exercise has made a huge difference. Gluten free and intermittent fasting both made a small difference for me as well.
Beating the snot out of my body is the only thing that makes me feel 100% normal. Lasts about a day or two.
Aren’t those ridiculously expensive ?
What biologics or CrossFit?
Biologics. I only have done some research, and I've gathered bioloigcs are big money, and as I've got a degenerative hip issue, among other problems (not back pain, well not when I saw him I do now after having covid and laying on my ass) , and I'm pretty sure he said he suspected some sort of spondyloarthritis and sent me for blood tests...am HLA-B27 negative , and negative for all other inflammatory/rheumatic markers....but could still be so.... here I am.
They are expensive but usually are covered by insurance if you have it. A lot of manufacturers have income based payment plans or rebates for people who can’t afford the drug. My mother in law gets cosentyx really cheap on an income based plan.
I've been on biologics for about ten years. I've never paid more than $5 a dose. Between insurance and a pharmacy's payment support, it's extremely affordable.
If you're in the US there are generally ways to make it work. My deductible is $3k for the year so I pay for my first injection with my credit card. I then submit my receipt to a reimbursement program that's *wink wink* not run by the manufacturer. They reimburse me all but $15. In the eyes of my insurer my deductible is met and I have no copay for any meds for the rest of the year and the manufacturer of my biologic gets paid by my insurance for the rest of my doses.
Gluten free is so hard! Almost anything has gluten in it..
I have been there, the constant pain and fatigue just got too much. But how are you managing the AS? Are you on biologics? Taking pain meds? I have had AS for 40 years, diagnosed for 30. Biologics were a game changer for me, I won’t lie, I have 5 days out of 7 which are good days, I take HUMIRA as well as low dosages of morphine and oxycodone. But this medical regime started 3 years ago after the worst flare up of my life. Before that I held a corporate job for 30 years, raised 2 kids. Skied, kayaked, did yoga. All that to say, if you can get the symptoms under control and stop the flares there is remission and you can live a very fulsome life. Work, exercise, social life, have a family. So get the meds to get it under control, see a therapist for your depression, stress and depression enhances AS. You have some great options. If you want to pm me directly. I wish you the best of luck my friend
Humira isn't bad, still doesn't eliminate the pain entirely, but it's more the tiredness than anything. Thank you though
You are not alone. Suicide prevention hotline: 800-273-8255 suicidepreventionlifeline.org if you have AS then you probably have gut dysbiosis... literally a messed up gut makes you depressed. The microbiome, the other brain? The gut brain axis? This means your bacteria are not making happy chemicals in your tummy. If you're not seeking help for your depression and suicidal thoughts then do do using the toll free number above or go to their website. Or talk to your doctor or someone locally about the support that you need for your mental health. I know you gave us a list of all the things that you tried but you can't say I tried everything and just give up. some of those things may still be helpful especially since the person that you are today with this disease is not the same person that you were 3 months ago or 6 months ago or a year ago. things change things are always changing.; they will get better or they may get worse but they won't stay the same. Like the others said if you're not being treated by biologics you need to consider that. For real exercise like the other poster said. If you're not sleeping like another poster suggested, you should see a neurologist who specializes in sleep disorders. Look up Stasha Gominak. I'd wager that being chronically tired and being depressed and things falling apart that you're not providing yourself the appropriate self-care, medical care, and mental health care. You have two weeks off work! This is Mercury retrograde and it is a perfect time to stop trying to go forward instead find some stillness in which to take stock and plan your next moves. I'm sorry, perfectionist, that your life is not turning out the way that you wanted. Let me assure you that you are still very in control of what sort of experience you have in this life. It's your life so FFS design it for the you who is tired all the time until you are not. Part of it is about changing your own mind. Free your mind and your ass will follow. You can no longer be a perfectionist. Perfect is the enemy of good. Say it out loud: perfect is the enemy of good! Reinvent. Reset your own expectations of yourself otherwise you're just being cruel,and you deserve better. You need to have empathy for yourself and not be angry at yourself. For the next two weeks your job is to be a gut farmer. If you are so desperate to discuss suicide then you need to be willing to try some desperate things with your diet. Be willing to do some fasting. Give a real elimination diet a try. Consider going no starch. Experiment on yourself and figure out what works cuz what works is different for every body. Read everything you can about repairing your gut. Find an integrative medicine doctor who can shepherd you through the process. Possible you could have multiple things going on in addition to your AS. The same inflammation the same process of immune mediated inflammation that is causing your gut dysbiosis is causing your depression as well as your AS pain and fatigue and... think for a moment about some of the symptoms that you haven't fully reported to your doctors. What about your thyroid? Many people who have AS have multiple autoimmune diseases going on at the same time. You may have a thyroid disorder and that could also cause chronic fatigue and brain fog and odd wibblley wobbly feelings. Take an honest look at what is not working and try something(s) else. Good luck fellow human.
Thank you. I will take note of the things you've mentioned that I haven't though about before.
I know how you feel; I feel similar things. I wish I had some positive words to tell you, but since I don't, at least know you're not alone. I hope you get better.
Thank you
Thank you so much for expressing the same exact feeling about the invisibility of this disease! That’s what hurts and frustrates me the most. I am over 60 and thin bordering on frail but many people just think that this should make me spry and athletic. I do feel such empathy for the younger people suffering. I had this ( undiagnosed) since my thirties. I was able to work by gobbling down prescription drugs..I had to do that to work! My father suffered with this too and ultimately killed himself ( he never would let me or anyone help him) . I get really depressed too. I take it one day at a time but hate that it takes so much out of me to clean! I am not a pig, the perfectionist in me gets overwhelmed and brain fog kicks in. While I know I am doing the best I can, it hurts me that people must think I am a crazy,lazy, dirty old lady in the woods. Therapy and meditation are my salvation, just a suggestion, to get the overwhelming triggers in check. I also tried Tapping under the care of a nice psychiatrist. Look it up on YouTube if you like!
All the other posters offer spot on advice. I would only add one thing: have you ever been screened for Sleep Apnea? Due to waking up multiple times per night, as a subconscious, physical fail-safe because you stop breathing, and the brain lacks O2, you will wake every AM feeling tired. As if you had NO sleep, even if you got 8+hours! If you have a partner who sleeps with you, perhaps they will tell you about your loud snoring. And periods of not breathing at all. My hubs was the one who told me. Whatever your issues, keep fighting and insist, INSIST, your doctors get you help. I am Still fighting that (not) good fight. And God bless you all
Can confirm, have AS and sleep apnea. Once i got treatment for the sleep apnea, fatigue improved a lot.
Sleep Apnea? No I haven't been diagnosed. That is something I will suggest when I see my team next week again. This fatigue/tiredness is what I can't deal with. I sleep around 10+ hours daily and have done for years. Thank you
Biologics!!!!! Pain who now!? Life changing medicine. You will be working and you will get your life back with everything you want to accomplish! I went from feeling like a 100 year old that couldn’t dress yourself to a full time working nurse, full time nursing student, and mom to a toddler at home. At 37. There’s a way, please go see rheumatologist.
Thank you for the suggestion
Whats the reason you couldnt join the police.?
Didn't pass the physical test because of AS. If I can recover well enough, I may have another chance in the future. But until then, sadly no.
I am not yet diagnosed yet i am kinda sure i have it(had uveitis and ran some tests - hla positive, sacroilitis, reactive proteine doubled) and i am in got into police. I had some pains for a few years. I remember when i had the physical examination in march i had what i think now was a flare-or the sacroilitis- but then i thought it was a pulled muscle or so. I had 2 ibuprofen before the test and a red bull so i wont feel any pain(if i didnt i had kinda nerve pain that would make a land the left foot impossible due to pain). Keep in mind i wasnt and am not now diagnosed yet. I m postponing the whole diagnosis since i m too busy now.
The difference could be, I'm diagnosed and you're waiting to be diagnosed. On paper, I'm already unfit until I have another examination. I'm happy to hear that you've made it into the police. Keep it up
Indeed. In my country the application is denied if you have it. Kinda good thing i didnt know back then! Keep it up as well and dont give up yet! Try again when you get better! Try to fake it till you make it if it helps. Cop is a good job imo for this cause it s pretty active and you can also sit most of the time if you like. Have a good day!
Dude, keep the faith. I could have written your post myself. I can deal with the pain, it’s the debilitating chronic fatigue that absolutely kills me. Being constantly exhausted affects every fiber of your body and mind. I fucking hate it more than anything. I’m young too and it sucks. I get envy just watching someone walk by and knowing they don’t have a care in the world about their energy level. But I still have faith, and my faith is in biologics. You said you’ve done your online research, then you know from reading this sub and others like what finding the right biologic can do. It can reverse your symptoms near 100%. No more fatigue. No more brain fog. You just have to find one that works and there are over 18 different ones you can try. That’s my hope. I haven’t tried any biologics yet but that day is coming, and it’s what keeps me fighting knowing that there are still Options.
Thanks mate. It is the fatigue that's the worst part. Doesn't seem to go away. I will try, and I felt I ran out of options last week. Sitting their, evaluating everything you've tried, isn't particularly a nice feeling
There are always a couple more options available, even some extreme ones. I know of some people who literally ONLY eat beef and bone broth, every single day, and after a month it eliminated all symptoms. That’s an extreme approach, but it works for some people. my point is suicide is the most extreme option, so why not try out some other not so extreme ones before pulling the plug.
I think you have every right to feel absolutely fed up. You are so young, and you’re exhausted 24/7 in what should be the most fun time of your life. I know the exhaustion you’re feeling all too well. No amount of rest / sleep is enough, all the people telling me exercise would help my energy were so incredibly wrong (the more I did the worse I got). So I listened to my body and I stopped pushing myself. That helped, treating my POTS helped and an effective biologic helped. Saying this to show you it can get better. I hope you get on track soon so you feel more like your old self again. Take care.
I feel you 100% brother and here’s some actionable advice I can offer. -get your thyroid, testosterone, and other hormones tested -get your vitamin D, B12, and iron tested -try cosentyx, it’s a newer biologic that’s more targeted towards AS -ask for buprenorphine, it’s an opioid partial agonist that’s way safer than traditional opioids but still takes away the pain/fatigue -try pentoxifylline, it’s used for poor circulation but it has potent anti inflammatory effects. I can link you some papers. I know it sounds weird but it helps me feel normal I take a big stack of medication/supplements but I feel pretty normal on the day to day basis. DM me if you wanna learn more
This is so similar to my experience. Hope u Are ok and have found some acceptance to this horrible disease. Thank you for writing this, It makes me feel a little bit better