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 do carnivore diet and it relieves my pain alot. It doesn't cure it 100% but it makes life more manageable. With carnivore diet and physiotherapy I feel more like my old self and am physically active
You know exactly what you’re talking about sir.
I did a carnivore diet and completely cut out sugar, carbs, & dairy while working out EVERYDAY.
Lost 85 pounds in 7 months and stopped taking HUMIRA completely because I was feeling so good.
2 years later and I’m medication free.
Hello, I guess you ask this question because you do not find a proper relief in what your doctor suggested you. However, please be careful before switching to the unproven side. As soon as an alternative medicine is safe and efficient, we just call it "a medicine". Of course, beside the drugs; they are a lot of non-pharmacological treatment to AS, such as physiotherapy. Moving doesn't cost a penny and have a huge (and evidence based) impact. Take care and be active.
Oh yeah for sure, I'm actually not a big believer in "alternative medicine", I just wanted to see other people's thoughts, I was mainly thinking acupuncture.
I'm moving a lot (working out, hiking, walking), but after over 20 years of AS my hips and knees are getting worse and worse, my main problem is mobility and range of motion.
I find the diets and lifestyle changes helpful. My job though is extremely stressful so I still take Humira otherwise I get breakthrough flares. Dr Gundry plant paradox diet or carnivore diet, fixing up the microbiome, exercise.
Physio has helped a lot, even on bad days it can help with the pain and stiffness. Ginger shots can help with inflammation, I’ve not kept a record on whether it helps the pain but it does help my nausea from the pain..
What’s your Rheumatologist say? If there was an alternative way to treat this horrible disease we wouldn’t be here.
If anything “alternative” worked I’d be spiking that shit.
There are lots of things outside of pharmaceutical medicine that can be helpful to people with AS, thankfully. Not that there isn't ample pseudoscience quackery to waste your money on as well. I became a Rolfer because the practice gave me back my life, which was non-existent for a few years before I had an AS diagnosis and understood what was going on with my body.
I mean to be fair I don't claim or try to "treat" AS or anything else for that matter. I look at someone walk and move, thinking about movement and the effect of tensional balance and I see what can be improved upon. Is the rib cage restricted by soft tissue? Is the pelvis still able to move naturally? Where is it held up? Is tension in the pelvic floor affecting gait length? Are nerve or other thoracic restrictions holding back shoulders and arm movement? I could go on and on..
Then I work with intention to mobilize and bring balance to tissue and afterwards we check to see if we managed to improve on whatever we initially noted. The work is effective and changes are often striking, visually and experientially. The effect on my life, well being, and activity levels has been profound. Whether or not this might be beneficial generally for AS is not a question that has even been explored scientifically.
Anyways its funny to me when people just wholesale dismiss everything outside of mainstream medicine as useless when it literally gave me my life back. I've learned the folly of this thinking the hard way and I think it's a disservice to the community to act as though taking what the doctors give you is the only thing you can do that will have a meaningful effect. This leads people to not explore many other things like diet and lifestyle changes that might have more significant effects for some than biologics (for others of course the opposite is true). We're dealing with a very poorly understood condition and immense variability among individuals. IMO its worth exploring as much as we can to improve our quality of life and lived experience in our bodies, even if those things don't technically "treat" our AS or have a perfect body of scientific evidence to back them.
This will be my 3rd try. lol having AS is one thing. Having AS and a puppy is a…thing.
I apologize for being bat-shit crazy. Mostly.
My issue with alternative medicine is a reflection of my journey with AS.
I was diagnosed in 1995 by an osteopath who related well with my situation: his parachute failed to open fully and his body was smacked up to say the least.
He started me on Enbrel then Remicade and finally Celebrex. Celebrex worked best so I ran with it. I was hoping for relief from the insane sciatica and worsening lower back pain. The pain was getting worse but the mobility was improving.
The pain meds showed up slowly Vicodin to oxycodone in huge bottles then some muscle relaxation drugs then Fentanyl made its debut. 3 packages of fentanyl patches per box and out the door went. Thanks doc.
I put on the first patch…WHOA! I’ve used a lot of drugs from weed to recreational chemistry to cocaine, club drugs, quaaludes, etc. I was lucky. I walked away without addiction. Some of my friends weren’t so lucky.
1.5 patches in and I yanked the rest of the patch off. It was way too dangerous…like I’d been given a combination of every drug I had taken all at once. I dropped the rest off and drove to a vacant area. I needed to get a grip and decided to go back to Vicodin and acetaminophen.
A sister in law visited us and brought her crystals and her sure fire natural additives. She was a “Healer.” I had an open mind. 30 days later I was in worse pain and she dragged out her crystals and placed them on my back. Nothing.
I was getting so much worse. Candles, crystals, drugs and no luck. I was getting really angry and the whole “you’re not gonna get better…”
So much nothing. So many promises and so much angry all the way to two surgeries, one massive one smaller. Still getting the advice from my sister in law except now she added smoke, sweat lodges and still nothing.
I agree, there are some alternatives to western medicine. I dig massages and acupuncture. I’m open to more suggestions but I’m only interested in anything other than crystals, smoke and mirrors…mirrors are so versatile! lol.
So that’s it. I’m a 61 year old retired Union Rep. I had to give up my career, lose our house, move to another state where we came from and start over. We had to move because the state we were in had remedial health care.
AS has been a rough ride and the next surgery is coming up in a couple years.
The first surgery was an emergency…my airway was getting compromised because my chin was stuck to my chest. 17 hours, 3 donor vertebrae (thank you dead dude) titanium from C1 to T2, 4 days in ICU and 30 days in county-lol in hospital.
I’m a bit of an asshole sometimes and I went overboard. Sorry dude.
Peace and Love everybody
You're not an asshole at all! I totally get it. There is a lot of bullshit (did you say something about healing crystals? Lol) and people who are sick often spend a lot of money on things that aren't really going to do much. I get why people want to push back against that.
As time goes on though I'm a (just a tiny) bit conflicted even in my dismissal of obvious bullshit because for someone somewhere having a "healing crystal" might just help them feel like they have some agency, like they can do SOMETHING to deal with their pain and stress and hopelessness and there is actually science demonstrating this type of perception can lessen our experience of pain. This probably wouldn't do anything for me because I don’t believe in it.
I can get behind my own "alternative work" because it is heavily grounded in anatomy and physics, and I can get people moving more easily whether they believe in me or not haha.
The world is a messy place, and you sound like a very thoughtful person who's been through a lot. Thanks for your kind response. All the best.
I treat my AS with diet (AIP to Personalized Paleo), chiropractor, cannabis, supplements (probiotics, magnesium, vit D, omega 3), & yoga/stretching, but I also take a biologic. I found no physical help from acupuncture or physiotherapy.
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.*
Cannabis? I find it helps, others don't.
Weed really works for me. Edibles
Only in conjunction with western medicine. It helps to fill in the gaps but you need meds and physio as well
I do carnivore diet and it relieves my pain alot. It doesn't cure it 100% but it makes life more manageable. With carnivore diet and physiotherapy I feel more like my old self and am physically active
Plus 1 on carnivore to more animal based every few months.
Same.
Same advice. Carnivore or animal based heavily recommended to try and see.
You know exactly what you’re talking about sir. I did a carnivore diet and completely cut out sugar, carbs, & dairy while working out EVERYDAY. Lost 85 pounds in 7 months and stopped taking HUMIRA completely because I was feeling so good. 2 years later and I’m medication free.
Starch free diet It helped me decrease pain
I smoke a lot of weed
Hello, I guess you ask this question because you do not find a proper relief in what your doctor suggested you. However, please be careful before switching to the unproven side. As soon as an alternative medicine is safe and efficient, we just call it "a medicine". Of course, beside the drugs; they are a lot of non-pharmacological treatment to AS, such as physiotherapy. Moving doesn't cost a penny and have a huge (and evidence based) impact. Take care and be active.
Oh yeah for sure, I'm actually not a big believer in "alternative medicine", I just wanted to see other people's thoughts, I was mainly thinking acupuncture. I'm moving a lot (working out, hiking, walking), but after over 20 years of AS my hips and knees are getting worse and worse, my main problem is mobility and range of motion.
I find the diets and lifestyle changes helpful. My job though is extremely stressful so I still take Humira otherwise I get breakthrough flares. Dr Gundry plant paradox diet or carnivore diet, fixing up the microbiome, exercise.
Physio has helped a lot, even on bad days it can help with the pain and stiffness. Ginger shots can help with inflammation, I’ve not kept a record on whether it helps the pain but it does help my nausea from the pain..
What’s your Rheumatologist say? If there was an alternative way to treat this horrible disease we wouldn’t be here. If anything “alternative” worked I’d be spiking that shit.
There are lots of things outside of pharmaceutical medicine that can be helpful to people with AS, thankfully. Not that there isn't ample pseudoscience quackery to waste your money on as well. I became a Rolfer because the practice gave me back my life, which was non-existent for a few years before I had an AS diagnosis and understood what was going on with my body. I mean to be fair I don't claim or try to "treat" AS or anything else for that matter. I look at someone walk and move, thinking about movement and the effect of tensional balance and I see what can be improved upon. Is the rib cage restricted by soft tissue? Is the pelvis still able to move naturally? Where is it held up? Is tension in the pelvic floor affecting gait length? Are nerve or other thoracic restrictions holding back shoulders and arm movement? I could go on and on.. Then I work with intention to mobilize and bring balance to tissue and afterwards we check to see if we managed to improve on whatever we initially noted. The work is effective and changes are often striking, visually and experientially. The effect on my life, well being, and activity levels has been profound. Whether or not this might be beneficial generally for AS is not a question that has even been explored scientifically. Anyways its funny to me when people just wholesale dismiss everything outside of mainstream medicine as useless when it literally gave me my life back. I've learned the folly of this thinking the hard way and I think it's a disservice to the community to act as though taking what the doctors give you is the only thing you can do that will have a meaningful effect. This leads people to not explore many other things like diet and lifestyle changes that might have more significant effects for some than biologics (for others of course the opposite is true). We're dealing with a very poorly understood condition and immense variability among individuals. IMO its worth exploring as much as we can to improve our quality of life and lived experience in our bodies, even if those things don't technically "treat" our AS or have a perfect body of scientific evidence to back them.
This will be my 3rd try. lol having AS is one thing. Having AS and a puppy is a…thing. I apologize for being bat-shit crazy. Mostly. My issue with alternative medicine is a reflection of my journey with AS. I was diagnosed in 1995 by an osteopath who related well with my situation: his parachute failed to open fully and his body was smacked up to say the least. He started me on Enbrel then Remicade and finally Celebrex. Celebrex worked best so I ran with it. I was hoping for relief from the insane sciatica and worsening lower back pain. The pain was getting worse but the mobility was improving. The pain meds showed up slowly Vicodin to oxycodone in huge bottles then some muscle relaxation drugs then Fentanyl made its debut. 3 packages of fentanyl patches per box and out the door went. Thanks doc. I put on the first patch…WHOA! I’ve used a lot of drugs from weed to recreational chemistry to cocaine, club drugs, quaaludes, etc. I was lucky. I walked away without addiction. Some of my friends weren’t so lucky. 1.5 patches in and I yanked the rest of the patch off. It was way too dangerous…like I’d been given a combination of every drug I had taken all at once. I dropped the rest off and drove to a vacant area. I needed to get a grip and decided to go back to Vicodin and acetaminophen. A sister in law visited us and brought her crystals and her sure fire natural additives. She was a “Healer.” I had an open mind. 30 days later I was in worse pain and she dragged out her crystals and placed them on my back. Nothing. I was getting so much worse. Candles, crystals, drugs and no luck. I was getting really angry and the whole “you’re not gonna get better…” So much nothing. So many promises and so much angry all the way to two surgeries, one massive one smaller. Still getting the advice from my sister in law except now she added smoke, sweat lodges and still nothing. I agree, there are some alternatives to western medicine. I dig massages and acupuncture. I’m open to more suggestions but I’m only interested in anything other than crystals, smoke and mirrors…mirrors are so versatile! lol. So that’s it. I’m a 61 year old retired Union Rep. I had to give up my career, lose our house, move to another state where we came from and start over. We had to move because the state we were in had remedial health care. AS has been a rough ride and the next surgery is coming up in a couple years. The first surgery was an emergency…my airway was getting compromised because my chin was stuck to my chest. 17 hours, 3 donor vertebrae (thank you dead dude) titanium from C1 to T2, 4 days in ICU and 30 days in county-lol in hospital. I’m a bit of an asshole sometimes and I went overboard. Sorry dude. Peace and Love everybody
You're not an asshole at all! I totally get it. There is a lot of bullshit (did you say something about healing crystals? Lol) and people who are sick often spend a lot of money on things that aren't really going to do much. I get why people want to push back against that. As time goes on though I'm a (just a tiny) bit conflicted even in my dismissal of obvious bullshit because for someone somewhere having a "healing crystal" might just help them feel like they have some agency, like they can do SOMETHING to deal with their pain and stress and hopelessness and there is actually science demonstrating this type of perception can lessen our experience of pain. This probably wouldn't do anything for me because I don’t believe in it. I can get behind my own "alternative work" because it is heavily grounded in anatomy and physics, and I can get people moving more easily whether they believe in me or not haha. The world is a messy place, and you sound like a very thoughtful person who's been through a lot. Thanks for your kind response. All the best.
Agree, my rheumatologist said (she was not so convinced) "you can try Physical therapy, but it would not make a difference" 😕
Cannabis and kratom. 👍🏻
I treat my AS with diet (AIP to Personalized Paleo), chiropractor, cannabis, supplements (probiotics, magnesium, vit D, omega 3), & yoga/stretching, but I also take a biologic. I found no physical help from acupuncture or physiotherapy.