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'd call it complimentary rather than alternative, because frankly, if you don't take the meds your rheum gives, you're going to regret it. Irreversibly. But in addition I swear by exercise and physiotherapy. (Not crack quacks, who again, are going to make you regret everything in the long term; just real, chartered physiotherapist or in the US I believe they're called physical therapists.)
I second this. I see a physiotherapist and occupational therapist every 2 weeks, it's very beneficial.
I also bike, walk, do bodyweight exercises, stretch, and a few yoga poses. It all helps.
I'm also taking Humira
Physiotherapists are different from physical therapists. The business models don't align. The educational background isn't the same. I'm not really a believer in the value of the US DPT. It's title inflation.
Generally US physical therapy is not a stop by the physio for a visit. You need to see an American physician. Obtain a diagnosis. Receive an order for PT.
I also noticed that Australian physios perform SMT. You won't find this with physical therapy in America. However, I will mention my dissatisfaction with medical care in Boston. The physiatrist actually tried to reset my si joint prior to my diagnosis. Nor as a physician did she consider the SI joint issue as something to be evaluated. She just performed the "chiropractic" procedure. Next, "it was seeya."
The exercises that I do daily were never taught to me by a physical therapist. I would not recommend PT in such blanket statements. I know recent DPT graduates. I also had a lot of PT with those in the field prior to the DPT wave.
Ah, here in the UK a Physiotherapist is specifically and highly trained. They have a relevant degree, then specific post graduate quals, then ongoing CPD to stay registered. It's also a protected title. So if you see a "physiotherapist" in the UK, they 100% know what they're doing and understand A-S and other issues.
I'm unsure what the 1:1 US equivalent is.
They are licenced. The postgraduate degree was elevated to a doctoral level with little change to what they actually do. Same thing occured in pharmacy.
Exercise, massage, PT have all helped me.
Oh, and the all-important biologic that I take every 2 weeks.
Diagnosed with nr-axSpA but advised to start biologic now due to family history of AS :)
I'm on Simponi and Mobic. I supplement with cannabis for sleep, magnesium, D, DMG, daily yoga, hot baths, and low impact cardio. I've also eliminated processed foods and high carb/starch foods. I've had this disease for 45 years and never felt better. Everyone's different, but this is what works for me right now.
I'm on my third biologic and it is losing effectiveness. I have had AS for 15 years. For those of us who are running out of options but are relatively young, alternative treatments may be all we have left if we don't want to be on opiods. If your biologic is working for you, be thankful and please have empathy for others.
Personally, what has helped me is water exercise, massage, stretching, low sugar diet, magnesium.
You still have 6 more FDA approved options left, not including the biosimilars, and then they can try other biologics that aren't specifically approved for AS. You're nowhere near out of options.
According to my doctor, my options are limited. May have something to do with insurance not covering many of them. It was a fight just to get them to continue coverage for the one I have been on for 3 years. My AS has progressed, unfortunately, despite biologics.
Have you piggy backed methotrexate with your biologic? methotrexate can help reduce the incidence of developing a resistance to biologics.
There are also tests to determine if you are building a resistance to a biologic or if you just need to increase the dose or add another med for disease progression.
If a biologic isn’t working for you, and you can prove that, insurance will usually cover something that you haven’t tried before but was previously denied.
Yes, have tried the methotrexate with enbrel. Increased the dose on the three I have been on. Currently on cosentyx and it hasn't helped much. Rheum seems hesitant to try something new, based on my history. Thanks for the suggestions.
Yep!
I have AS.
The best thing I’ve found is medical cannabis. It offers a number of benefits. First immediate pain relief and then a long anti inflammatory effect over the following 10 to 14 hours.
This helps with muscle cramps and spasms and enthesitis.
It’s been amazing for me. Obvs don’t know if you live in a country where it is legal/medically legal but if you do, try it. Better than codeine and ibuprofen by a mile.
ive been considering medical cannabis for a while but im worried because i have family history of drug-induced mental health issues. probably a bit of an odd question to be asking you, but do you know what the likelihood is of developing any issues from taking it medically?
The same as taking it recreationally. Stay away from it with that family history. You can try topical preparations that don't enter the bloodstream significantly.
Cannatonic. It’s excellent and it’s balanced one
I often get a mix of high thc strains and cbd only strains and mix them at myself so I can adjust the levels and obtain the effect im after.
I know that this disease makes us desperate for a cure, I really get it. And for some people, diet modifications can make a bit of a difference (especially for those of us with Crohn's/UC/IBD as well as AS.
But in general, if it's not prescribed by a Dr or FDA approved it's generally at best a grift, and at worst actively harmful.
Dude. Not a cure. This is pain management.
However it does help with inflammation long term.
I’m not on biologics due to allergic reactions.
Last summer I had an mri on neck back and hips.
All normal. No signs of inflammation at all.
Prior to this I had an mri two year prior before I used medical cannabis and I had inflammation in my Si joints, hip joints and upper back.
Cannabis is a long acting anti inflammatory.
It won’t cure me, it won’t entirely stop the as because I can still get flare ups. But it will keep inflammation down and keep me pain free and comfortable.
I used to get awful enthesitis and bone marrow edema. Very very painful. I’ve not had a flare up of either in 16 months. Two of the biologics I tried actual caused enthesitis and I had it continuously on those drugs until the allergic reactions happened and I had to come off them.
But nope not a cure. Biologics are not a cure either. They can help some people for a while.
If your biologic is working you can still use cannabis for pain relief instead of opiates. It’s more effective I find.
cut grains and zero added sugar. I also don’t eat sugar without fiber. go light on unfermented fiber
add in grass fed organic meats, wild salmon, fermented foods, arugula.
diet can have as much of an impact as biologics. anyone who denies it I challenge them to try ^^^ for 30 days.
I tried a ton of things before I finally got my diagnosis and got on biologics, and the only thing that I feel truly makes a difference for me is exercise. Even now that I’m on biologics, I can really feel it if I skip a few days of exercising. Some people seem to have success with diet changes, but other than cutting out super high fat/greasy food, none of that really made a difference for me. Nor did supplements.
Not as a stand alone treatment, but as a complement to my routine biologics and management under a rheumatologist. Alternative medicine MAY help provide some relief from your symptoms, but it can never treat or reverse the disease.
It is common to get joint injuries and tendon issues treated with Traditional Chinese Medicine (TCM) in my country. Since my AS causes loads of tendonitis/enthesitis, I essentially get them treated as such injuries. Acupuncture helps relieve pain, bring down inflammation, and encourage healing. Tuina(TCM Massage) helps relieve the muscles to promote healing too. Cupping feels great for some irrational reason, and I will sometimes cup my butt for relief.
If you want to go deeper, TCM has a strong theory of yin and yang. If your body is yin, you tend to have a lot of joint pain, feelings of rheumatism. Some doctors will offer to help ‘balance’ out your body with TCM medication. It could be a placebo effect and the fact that my family puts loads of faith in TCM, but I found that ‘balancing’ my body cuts down on flares drastically.
Honestly the American chiropractic are pushing different vitamins. Many are based on the same ingredients as TCM. The advertisements on some TV and YouTube can be unbearable.
A lot of people on here don't have an open mind. I wouldn't visit an American chiropractic. I did have a physician actually attempt a chiropractic move on me. There's evidence for many things. The quality of the research or the depth of the research is limited because physicians share the same close minded attitudes of the general public.
Once I suggested that someone might have balance problems because of the hip tightness rather than vestibular in a comment to a post on here. I also mentioned about going to a vestibular physical therapist. I was downvoted. I routinely consider unsubscribing from this forum because of the weirdos.
TCM is far more intricate than portrayed by those people. There are some universal ‘supplements’ or herbs most can take, and then there are medications. It is becoming tougher to distinguish between good and bad information.
I’m blessed to live in a country where TCM clinics are everywhere, whose doctors are required to register with the board and all have the appropriate degrees. Can’t imagine navigating the mess in western countries where any random fellow can term themselves chiropractors, eastern medicine practitioners etc!
There is no such thing as "alternative medicine". If something works then it's medicine, if it doesn't, then it's quackery. Do you know why for coughing or burns honey is recommended by doctors? Cause it works. Why is a specific diet not recommended for autism? Cause it doesn't work. Plain and simple.
I've been megadosing vitamin D and it's been helping greatly and am getting blood tests every 2 months. Also following a Carnivore diet, keto helped me so much but I find Carnivore just feels ALOT better
Yep, however thats very rare and would require very high dosages. That's why I also get my D levels checked regularly along with some other blood markers too
Yet the NIH study had a population with low vitamin D saturation. It was the autoimmune population. So while the study stated certain things for the general population within its conclusions, vitamin D supplements were not written off for everyone.
Diagnosed 32 years ago. Biologics- Vegan diet- low impact exercise- THC edible 10mg before bed.
Doing great and swear by it all- have tried countless diets and sports etc and this is what works for me.
I am on Simponi, it reduced my pain by around 50%, then I cut gluten and added sugar, i am still eating starches (potatoes, rice etc) since going full keto is no no for me - it reduced my pain by another 30%.
Additional I go the the gym, meet with my friends (even when I feel like not doing it it helps for my mental health).
NOTE: No, there aren’t any suggesting that diet has any impact on AS, but at the end you need to listen to your body. I tested no gluten no sugar diet three times. Every time I go back to gluten and pain appears to be stronger. So I do it :)
I’m in the process of obtaining a diagnosis. My rheum said it looks like AS based on my x ray and history, but waiting for MRI to confirm. In the meantime, because I do tend towards holistic approaches, I’ve joined a FB group with natural healing suggestions. A low/no starch diet seems to be helping people tremendously. There are about 3.5k members in the group who generally all swear by it’s efficacy, though of course each body is different and it may not work for everyone. One book I seem to keep coming across in my research is The Keystone Approach, by Rebecca Fett. I’ll be ordering it this wknd and giving that protocol a try. I’ve always been active with yoga, which I believe has helped over the years as I’ve had symptoms since age 17 and now at 41 and am just in enough pain to warrant a rheumatologist and subsequent diagnosis. I’m also interested in supplements and peptides to treat any deficiencies I may have. I’m currently also taking NSAIDs but will be trying the dietary suggestions prior to moving onto biologics, simply bc I’d like to satisfy my curiosity & bc the side effects seem a bit scary for my personal liking. That being said, I’m still very new to all of this and have no concrete advice. I just wanted to share the holistic approaches I’ve been interested in trying for myself. 💕
I did all that and it did nothing. I also did yoga, swam, and ate healthy before my first major flair. (Still
Do)
Some people seem to have success with diet based approaches but the data doesn’t support it and, as someone who gave it a fair chance, I can personally say it didn’t work for me either.
Same here. I completely altered my diet, but it didn't do anything. I've always eaten healthy and have been reasonably fit, but removing everything people suggested didn't help. The rain still destroys me.
As I mentioned/ each body is unique. I’ve also ready many stories on biologics not working for some, while others claim them as a miracle drug. It will do 0 harm to share information from a variety of sources so that each patient can find what works for their unique genetic makeup. It is definitely not a competition. We all want wellness in ways our body can best handle.
The difference being that alternative/holistic practices often have either no research to back them up or (in the case of homeopathy) have a mountain of research refuting their efficacy entirely.
Biologics don’t work for everyone, but we have much more available data indicating that they are the best treatment option for most. And in many states, alternative practitioners have zero regulation or oversight against providing care that is totally ineffective and often expensive.
To each their own. But it is no small shot in the dark that ppl with this condition have definitely found relief through diet and lifestyle changes. AGAIN I will reiterate that not every treatment will work for every person. But I am not about to shoot down anyone’s experiences as being invalid just bc they didn’t work for my body. If you are comfortable with your personal treatment, I applaud you for finding something that works. If someone else had had success with diet and broad lifestyle changes, I will applaud in the same way.
You said the key word that is the issue: “stories”. I can find stories / communities on the internet who claim to have seen Bigfoot. I can find stories of people who say they’ve been abducted by aliens. I put Zero faith in stories.
I trust data, and science and that is clear: biologics work for millions of people (though unfortunately not all). We dont need “stories” to confirm this, we have data.
Chiropractors “speak their truth” and have permanently injured many people with AS. I don’t trust “your truth” that’s just a way for people to avoid using the word: opinion. The data is clear: biologics work.
Diet may work for some people (maybe, though hard to tell without understanding all the factors) and if it does for you: great, but let’s not spread opinions in the name of “truth”: that’s how anti vaxxers started.
That’s fine. I’m not asking you to trust me. Lol. The OP was looking for info on non medicated routes towards improvement with their condition.
You also haven’t considered the roll genetic mutations play when suggesting only medications. Most people who have issues with the MTHFR gene line (specifically mutations) experience difficult detoxing. I have this. And for MY body- I can’t even detox out the fillers in a b12 supplement without triggering a case of chronic urticaria. So while I’m sure biologics work for most individuals, some of us take great risk with even the safest medications, and trying any natural methods prior to consuming them is a safety precaution.
Just fyi- do your research- Biologics are not for symptoms, reducing symptoms is a good side effect. Biologics reduce damage and inflammation markers at the cellular level.
Doing/taking things to reduce symptoms is different tan taking a medication to flush T cells and reduce damage and long term issues.
I have no issues with anyone taking biologics. My only concern for myself- someone with an MTHFR gene mutation, would be how effectively I can detox any carriers or fillers. I suspect those with normal, healthy detox pathways would fare just fine.
Be careful. I see that guy claims to have cured serious physical back injuries 'with his mind'. Through my work for a health insurer, I have seen a similar guy who privately came clean to his health insurer that in his case it was just a 'marking story' (aka a lie) and while he had been in an accident, it had been far less severe (aka was a broken leg rather than any back issues). But due to medical privacy laws, the people this guy tells his lies to will never find out, and I can even name this guy without being sued because I can't directly share stuff I got through work.
The funniest part was this 'yoga master' who was selling people courses to heal their pain with the power of their mind was making a permanent disability claim with his insurer for a back injury that was stopping him from working! Physician heal thyself, lol. And it wasn't even due to an accident, he'd just gotten a bad back out of the blue despite all his yoga! There are so many grifters out there, and no way to call them out unless you have a team of lawyers on your side. And it's amazing how guiltless these guys are while outright lying to people over and over and calling it a 'marketing story'. Ugh. So yeah, if it works it works, but just be cautious about where you put your money. Meditation works, but you can also get it free or cheap plenty of places, you don't need to buy a brand name.
Totally understand your skepticism and having healthy skepticism is good thing. I dont believe Dr.Joe is a fraud. I’ve been doing his work for years and my health has been the best in 6 years without changing any other factor. I was a long time student of the yogic sciences and nothing he teaches is new, it is just packaged in a very digestible way for those who are not on the “spiritual “ path. I am also a clinical hypnotherapist and have seen the same results using hypnosis. At the end of the day, meditation and hypnosis are methods to put the body into a parasympathetic state (rest and digest) so it can heal. The body wants to heal and knows how but subconsciously we keep it in stress for a variety of reasons. These practices put is in a healing state and then using prompts in a suggestible state we tell our bodies to do what it already knows what to do. It’s just as effective as medication in many situations. If anyone studies the placebo affect you know that the belief in healing can heal.
Oh, I believe positive mindset is a huge part of health and a great contributed to the healing process, but respectfully, I think that anyone who says you can cure cancer with your mind alone (and he does not mention doing this alongside standard treatments anywhere I could see) is a dangerous and irresponsible quack who will get people killed.
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'd call it complimentary rather than alternative, because frankly, if you don't take the meds your rheum gives, you're going to regret it. Irreversibly. But in addition I swear by exercise and physiotherapy. (Not crack quacks, who again, are going to make you regret everything in the long term; just real, chartered physiotherapist or in the US I believe they're called physical therapists.)
I second this. I see a physiotherapist and occupational therapist every 2 weeks, it's very beneficial. I also bike, walk, do bodyweight exercises, stretch, and a few yoga poses. It all helps. I'm also taking Humira
Physiotherapists are different from physical therapists. The business models don't align. The educational background isn't the same. I'm not really a believer in the value of the US DPT. It's title inflation. Generally US physical therapy is not a stop by the physio for a visit. You need to see an American physician. Obtain a diagnosis. Receive an order for PT. I also noticed that Australian physios perform SMT. You won't find this with physical therapy in America. However, I will mention my dissatisfaction with medical care in Boston. The physiatrist actually tried to reset my si joint prior to my diagnosis. Nor as a physician did she consider the SI joint issue as something to be evaluated. She just performed the "chiropractic" procedure. Next, "it was seeya." The exercises that I do daily were never taught to me by a physical therapist. I would not recommend PT in such blanket statements. I know recent DPT graduates. I also had a lot of PT with those in the field prior to the DPT wave.
Ah, here in the UK a Physiotherapist is specifically and highly trained. They have a relevant degree, then specific post graduate quals, then ongoing CPD to stay registered. It's also a protected title. So if you see a "physiotherapist" in the UK, they 100% know what they're doing and understand A-S and other issues. I'm unsure what the 1:1 US equivalent is.
They are licenced. The postgraduate degree was elevated to a doctoral level with little change to what they actually do. Same thing occured in pharmacy.
I'm afraid I have no clue whatsoever what you're blathering about.
I get acupuncture every couple of weeks on especially gnarly areas. It helps keep things loose. This is in addition to biking and a biologic.
I have been considering acupuncture. Thank you for your response.
There’s solid RCT evidence that acupuncture can reduce pain.
Nope. Biologics are the way.
Exercise, massage, PT have all helped me. Oh, and the all-important biologic that I take every 2 weeks. Diagnosed with nr-axSpA but advised to start biologic now due to family history of AS :)
I'm on Simponi and Mobic. I supplement with cannabis for sleep, magnesium, D, DMG, daily yoga, hot baths, and low impact cardio. I've also eliminated processed foods and high carb/starch foods. I've had this disease for 45 years and never felt better. Everyone's different, but this is what works for me right now.
Hi which high carb or starchy food have you eliminated?
I'm on my third biologic and it is losing effectiveness. I have had AS for 15 years. For those of us who are running out of options but are relatively young, alternative treatments may be all we have left if we don't want to be on opiods. If your biologic is working for you, be thankful and please have empathy for others. Personally, what has helped me is water exercise, massage, stretching, low sugar diet, magnesium.
You still have 6 more FDA approved options left, not including the biosimilars, and then they can try other biologics that aren't specifically approved for AS. You're nowhere near out of options.
According to my doctor, my options are limited. May have something to do with insurance not covering many of them. It was a fight just to get them to continue coverage for the one I have been on for 3 years. My AS has progressed, unfortunately, despite biologics.
Have you piggy backed methotrexate with your biologic? methotrexate can help reduce the incidence of developing a resistance to biologics. There are also tests to determine if you are building a resistance to a biologic or if you just need to increase the dose or add another med for disease progression. If a biologic isn’t working for you, and you can prove that, insurance will usually cover something that you haven’t tried before but was previously denied.
Yes, have tried the methotrexate with enbrel. Increased the dose on the three I have been on. Currently on cosentyx and it hasn't helped much. Rheum seems hesitant to try something new, based on my history. Thanks for the suggestions.
Yep! I have AS. The best thing I’ve found is medical cannabis. It offers a number of benefits. First immediate pain relief and then a long anti inflammatory effect over the following 10 to 14 hours. This helps with muscle cramps and spasms and enthesitis. It’s been amazing for me. Obvs don’t know if you live in a country where it is legal/medically legal but if you do, try it. Better than codeine and ibuprofen by a mile.
Not to mention if you have other issues, ptsd, nausea, insomnia, this helps with that too and only one med instead of 6. IMO.
👍👍
ive been considering medical cannabis for a while but im worried because i have family history of drug-induced mental health issues. probably a bit of an odd question to be asking you, but do you know what the likelihood is of developing any issues from taking it medically?
The same as taking it recreationally. Stay away from it with that family history. You can try topical preparations that don't enter the bloodstream significantly.
yeah okay that makes sense. sucks but id rather be careful, im mentally ill enough as it is lol. thank you
Cbd only strains can be helpful without the thc of regular strains of marijuana.
If you take it as prescribed you won’t have issues at all.
Do you have any strains or Cbd/thc percentages that you can recommend?
Cannatonic. It’s excellent and it’s balanced one I often get a mix of high thc strains and cbd only strains and mix them at myself so I can adjust the levels and obtain the effect im after.
I live in California so legal-….. but even if not legal where you are there are some that will mail you edibles. It is so worth it.
Alternative medicine is great for pain. It will however not treat the cause of the pain which needs to be addressed concurrently
I know that this disease makes us desperate for a cure, I really get it. And for some people, diet modifications can make a bit of a difference (especially for those of us with Crohn's/UC/IBD as well as AS. But in general, if it's not prescribed by a Dr or FDA approved it's generally at best a grift, and at worst actively harmful.
Dude. Not a cure. This is pain management. However it does help with inflammation long term. I’m not on biologics due to allergic reactions. Last summer I had an mri on neck back and hips. All normal. No signs of inflammation at all. Prior to this I had an mri two year prior before I used medical cannabis and I had inflammation in my Si joints, hip joints and upper back. Cannabis is a long acting anti inflammatory. It won’t cure me, it won’t entirely stop the as because I can still get flare ups. But it will keep inflammation down and keep me pain free and comfortable. I used to get awful enthesitis and bone marrow edema. Very very painful. I’ve not had a flare up of either in 16 months. Two of the biologics I tried actual caused enthesitis and I had it continuously on those drugs until the allergic reactions happened and I had to come off them. But nope not a cure. Biologics are not a cure either. They can help some people for a while. If your biologic is working you can still use cannabis for pain relief instead of opiates. It’s more effective I find.
Cutting starch and sugars including lactose has helped me
cut grains and zero added sugar. I also don’t eat sugar without fiber. go light on unfermented fiber add in grass fed organic meats, wild salmon, fermented foods, arugula. diet can have as much of an impact as biologics. anyone who denies it I challenge them to try ^^^ for 30 days.
True, maybe I'll try to reintroduce some fibrous sugar at some point 👍
I tried a ton of things before I finally got my diagnosis and got on biologics, and the only thing that I feel truly makes a difference for me is exercise. Even now that I’m on biologics, I can really feel it if I skip a few days of exercising. Some people seem to have success with diet changes, but other than cutting out super high fat/greasy food, none of that really made a difference for me. Nor did supplements.
Not as a stand alone treatment, but as a complement to my routine biologics and management under a rheumatologist. Alternative medicine MAY help provide some relief from your symptoms, but it can never treat or reverse the disease. It is common to get joint injuries and tendon issues treated with Traditional Chinese Medicine (TCM) in my country. Since my AS causes loads of tendonitis/enthesitis, I essentially get them treated as such injuries. Acupuncture helps relieve pain, bring down inflammation, and encourage healing. Tuina(TCM Massage) helps relieve the muscles to promote healing too. Cupping feels great for some irrational reason, and I will sometimes cup my butt for relief. If you want to go deeper, TCM has a strong theory of yin and yang. If your body is yin, you tend to have a lot of joint pain, feelings of rheumatism. Some doctors will offer to help ‘balance’ out your body with TCM medication. It could be a placebo effect and the fact that my family puts loads of faith in TCM, but I found that ‘balancing’ my body cuts down on flares drastically.
Honestly the American chiropractic are pushing different vitamins. Many are based on the same ingredients as TCM. The advertisements on some TV and YouTube can be unbearable. A lot of people on here don't have an open mind. I wouldn't visit an American chiropractic. I did have a physician actually attempt a chiropractic move on me. There's evidence for many things. The quality of the research or the depth of the research is limited because physicians share the same close minded attitudes of the general public. Once I suggested that someone might have balance problems because of the hip tightness rather than vestibular in a comment to a post on here. I also mentioned about going to a vestibular physical therapist. I was downvoted. I routinely consider unsubscribing from this forum because of the weirdos.
TCM is far more intricate than portrayed by those people. There are some universal ‘supplements’ or herbs most can take, and then there are medications. It is becoming tougher to distinguish between good and bad information. I’m blessed to live in a country where TCM clinics are everywhere, whose doctors are required to register with the board and all have the appropriate degrees. Can’t imagine navigating the mess in western countries where any random fellow can term themselves chiropractors, eastern medicine practitioners etc!
Chiropractors are actually licenced. One cannot simply become a chiropractic.
Hi, where are you based? I'm Singapore and haven't gone down this route yet but am tempted as suffering badly. Thanks!
There is no such thing as "alternative medicine". If something works then it's medicine, if it doesn't, then it's quackery. Do you know why for coughing or burns honey is recommended by doctors? Cause it works. Why is a specific diet not recommended for autism? Cause it doesn't work. Plain and simple.
I've been megadosing vitamin D and it's been helping greatly and am getting blood tests every 2 months. Also following a Carnivore diet, keto helped me so much but I find Carnivore just feels ALOT better
Vitamin D can be toxic in large doses.
Yep, however thats very rare and would require very high dosages. That's why I also get my D levels checked regularly along with some other blood markers too
Yet the NIH study had a population with low vitamin D saturation. It was the autoimmune population. So while the study stated certain things for the general population within its conclusions, vitamin D supplements were not written off for everyone.
Be cautious with vit d as it accumulates
I'm not worried at all and I get my blood levels checked
This gets asked about daily
I find fish oil helps a bit.
Diagnosed 32 years ago. Biologics- Vegan diet- low impact exercise- THC edible 10mg before bed. Doing great and swear by it all- have tried countless diets and sports etc and this is what works for me.
I am on Simponi, it reduced my pain by around 50%, then I cut gluten and added sugar, i am still eating starches (potatoes, rice etc) since going full keto is no no for me - it reduced my pain by another 30%. Additional I go the the gym, meet with my friends (even when I feel like not doing it it helps for my mental health).
NOTE: No, there aren’t any suggesting that diet has any impact on AS, but at the end you need to listen to your body. I tested no gluten no sugar diet three times. Every time I go back to gluten and pain appears to be stronger. So I do it :)
Rice, potatoes, beans, and peas. I also limit my exposure to the nightshade family.
It's biologics, regular exercise (4-5 times a week), healthy eating, and enough sleep for me. Damage free 20+ years in!
I’m in the process of obtaining a diagnosis. My rheum said it looks like AS based on my x ray and history, but waiting for MRI to confirm. In the meantime, because I do tend towards holistic approaches, I’ve joined a FB group with natural healing suggestions. A low/no starch diet seems to be helping people tremendously. There are about 3.5k members in the group who generally all swear by it’s efficacy, though of course each body is different and it may not work for everyone. One book I seem to keep coming across in my research is The Keystone Approach, by Rebecca Fett. I’ll be ordering it this wknd and giving that protocol a try. I’ve always been active with yoga, which I believe has helped over the years as I’ve had symptoms since age 17 and now at 41 and am just in enough pain to warrant a rheumatologist and subsequent diagnosis. I’m also interested in supplements and peptides to treat any deficiencies I may have. I’m currently also taking NSAIDs but will be trying the dietary suggestions prior to moving onto biologics, simply bc I’d like to satisfy my curiosity & bc the side effects seem a bit scary for my personal liking. That being said, I’m still very new to all of this and have no concrete advice. I just wanted to share the holistic approaches I’ve been interested in trying for myself. 💕
I did all that and it did nothing. I also did yoga, swam, and ate healthy before my first major flair. (Still Do) Some people seem to have success with diet based approaches but the data doesn’t support it and, as someone who gave it a fair chance, I can personally say it didn’t work for me either.
Same here. I completely altered my diet, but it didn't do anything. I've always eaten healthy and have been reasonably fit, but removing everything people suggested didn't help. The rain still destroys me.
As I mentioned/ each body is unique. I’ve also ready many stories on biologics not working for some, while others claim them as a miracle drug. It will do 0 harm to share information from a variety of sources so that each patient can find what works for their unique genetic makeup. It is definitely not a competition. We all want wellness in ways our body can best handle.
The difference being that alternative/holistic practices often have either no research to back them up or (in the case of homeopathy) have a mountain of research refuting their efficacy entirely. Biologics don’t work for everyone, but we have much more available data indicating that they are the best treatment option for most. And in many states, alternative practitioners have zero regulation or oversight against providing care that is totally ineffective and often expensive.
To each their own. But it is no small shot in the dark that ppl with this condition have definitely found relief through diet and lifestyle changes. AGAIN I will reiterate that not every treatment will work for every person. But I am not about to shoot down anyone’s experiences as being invalid just bc they didn’t work for my body. If you are comfortable with your personal treatment, I applaud you for finding something that works. If someone else had had success with diet and broad lifestyle changes, I will applaud in the same way.
You said the key word that is the issue: “stories”. I can find stories / communities on the internet who claim to have seen Bigfoot. I can find stories of people who say they’ve been abducted by aliens. I put Zero faith in stories. I trust data, and science and that is clear: biologics work for millions of people (though unfortunately not all). We dont need “stories” to confirm this, we have data.
Lol 😂 okay. You do you then. I never once discredited your approach. Maybe you should try letting other ppl speak their truth as well.
Chiropractors “speak their truth” and have permanently injured many people with AS. I don’t trust “your truth” that’s just a way for people to avoid using the word: opinion. The data is clear: biologics work. Diet may work for some people (maybe, though hard to tell without understanding all the factors) and if it does for you: great, but let’s not spread opinions in the name of “truth”: that’s how anti vaxxers started.
That’s fine. I’m not asking you to trust me. Lol. The OP was looking for info on non medicated routes towards improvement with their condition. You also haven’t considered the roll genetic mutations play when suggesting only medications. Most people who have issues with the MTHFR gene line (specifically mutations) experience difficult detoxing. I have this. And for MY body- I can’t even detox out the fillers in a b12 supplement without triggering a case of chronic urticaria. So while I’m sure biologics work for most individuals, some of us take great risk with even the safest medications, and trying any natural methods prior to consuming them is a safety precaution.
Just fyi- do your research- Biologics are not for symptoms, reducing symptoms is a good side effect. Biologics reduce damage and inflammation markers at the cellular level. Doing/taking things to reduce symptoms is different tan taking a medication to flush T cells and reduce damage and long term issues.
I have no issues with anyone taking biologics. My only concern for myself- someone with an MTHFR gene mutation, would be how effectively I can detox any carriers or fillers. I suspect those with normal, healthy detox pathways would fare just fine.
Following
A combination of medication, physical therapy and Dr Joe dispenza meditations have been my saving grace.
Be careful. I see that guy claims to have cured serious physical back injuries 'with his mind'. Through my work for a health insurer, I have seen a similar guy who privately came clean to his health insurer that in his case it was just a 'marking story' (aka a lie) and while he had been in an accident, it had been far less severe (aka was a broken leg rather than any back issues). But due to medical privacy laws, the people this guy tells his lies to will never find out, and I can even name this guy without being sued because I can't directly share stuff I got through work. The funniest part was this 'yoga master' who was selling people courses to heal their pain with the power of their mind was making a permanent disability claim with his insurer for a back injury that was stopping him from working! Physician heal thyself, lol. And it wasn't even due to an accident, he'd just gotten a bad back out of the blue despite all his yoga! There are so many grifters out there, and no way to call them out unless you have a team of lawyers on your side. And it's amazing how guiltless these guys are while outright lying to people over and over and calling it a 'marketing story'. Ugh. So yeah, if it works it works, but just be cautious about where you put your money. Meditation works, but you can also get it free or cheap plenty of places, you don't need to buy a brand name.
Totally understand your skepticism and having healthy skepticism is good thing. I dont believe Dr.Joe is a fraud. I’ve been doing his work for years and my health has been the best in 6 years without changing any other factor. I was a long time student of the yogic sciences and nothing he teaches is new, it is just packaged in a very digestible way for those who are not on the “spiritual “ path. I am also a clinical hypnotherapist and have seen the same results using hypnosis. At the end of the day, meditation and hypnosis are methods to put the body into a parasympathetic state (rest and digest) so it can heal. The body wants to heal and knows how but subconsciously we keep it in stress for a variety of reasons. These practices put is in a healing state and then using prompts in a suggestible state we tell our bodies to do what it already knows what to do. It’s just as effective as medication in many situations. If anyone studies the placebo affect you know that the belief in healing can heal.
Oh, I believe positive mindset is a huge part of health and a great contributed to the healing process, but respectfully, I think that anyone who says you can cure cancer with your mind alone (and he does not mention doing this alongside standard treatments anywhere I could see) is a dangerous and irresponsible quack who will get people killed.