Treating Ankylosing Spondylitis with Chinese Medicine and Acupuncture

Ankylosing Spondylitis and TCM

Today is World Autoimmune Arthritis Day, so I’m writing about treating Ankylosing Spondylitis with Chinese Medicine and acupuncture. I thought I’d write a little about the alternative treatments for chronic illness that I’ve been using over the past few months. 

This post was written in May 2013. I’ve given up on alternative treatments, but I hope my post is informative for readers.

I live in Taiwan. Naturally, any time someone learns that I have severe arthritis, they automatically suggest acupuncture and Traditional Chinese Medicine (TCM). I can’t tell you how many times someone has said I SIMPLY MUST TRY their famous TCM doctor. It seems like every TCM doctor here is famous, by the way. 

My Story with Treating Ankylosing Spondylitis with Chinese Medicine and Acupuncture

I was diagnosed with Ankylosing Spondylitis in Taipei in February 2009 after suffering from a variety of strange symptoms over a span of ten years.

I might not look sick, but there is a maelstrom being waged in my body every day. My body is in a perpetual state of chronic inflammation. 

Ankylosing Spondylitis is a horrible and painful disease. I’ve tried everything to reduce the chronic inflammation that I’ve experienced since my diagnosis. I’ve tried over a dozen kinds of medications, I’ve done detoxes and elimination diets, including an anti-inflammatory diet in November 2013 that did not alleviate my symptoms.

Having tried all this, I have very little patience for people who suggest that food is a cure for chronic illness. 

Food is not a cure for chronic illness, although there is no disease in the world that can't be made a little bit better with eating a clean, balanced, and healthy diet. Click To Tweet

One bout of AS related complications started in early October 2012 and progressed through to March 2013. Despite my best efforts to bring things under control, my symptoms continued to worsen through November and December 2012.

My ears, in particular, have given me an enormous amount of trouble since I was a child. I experienced non stop cycles of my ear canals swelling and weeping with infection. Then the skin would dry up and crack. It affected my hearing and I am partially deaf in my left ear because of  infections. In January 2013, I experienced my first bout of AS-related uveitis.

By late January, chronic fatigue set in and I was miserable. Fatigue is a major complaint among patients with rheumatic diseases. It’s related to many things such as loss of sleep or stress, but it’s also a symptom of the disease itself.  When inflammation is present in your body, your body uses enormous amounts of energy to deal with it. 

In February 2013, I was in bad shape. 

At that point, someone who saw me struggling every day suggested I see a Chinese herbal medicine doctor. Having worked for this doctor, he suggested I see a famous Chinese medicine doctor in Taipei. 

At the time, Dr. Yu was famous for successfully treating a number of brain and spine diseases. He also had success stories of patients with  autoimmune illnesses improving under his care.

This was not my first time seeking help from a TCM doctor. I was treated with acupuncture in mainland China for AS complications in 2003, but the treatments did not help. I also tried cupping and scraping in Taipei in 2007. 

My Treatment Plan with Dr Yu

My first treatment with Dr Yu began on March 4, 2013. The clinic was on the 4th floor of a building that smelled like it had been doused in herbal solutions. Upon entering, patients are greeted at an old beat-up desk. Staff are busily  measuring out different kinds of herbs on old fashioned hand scales a long counter against the wall. The herbs are funneled into a special bag that is used to steep the tea. Stepping into the office, there are several narrow cots for acupuncture to the right.

READ:  Chronic Ear Infections and Ankylosing Spondylitis

The smell of burning incense is strong, but it does nothing to detract from the overwhelmingly musty smell of steeped herbs. It’s a pungent smell that immediately sets my stomach off in spasms of queasiness. 

I was greeted by an American herbalist who has been studying with this doctor for eight years. He’s just one of half a dozen foreign doctors in the clinic. As I bring him up to speed on my medical history, he tells me that they had successfully treated other patients with AS.

This gave me pause for thought. I was there to relieve the pain and inflammation that had developed in my joints, ears, and eyes and this man was telling me that they could not only help with my eyes and ears, but they could also get me off my AS medication completely. I was stupid and stopped taking my AS medication.

Finally I meet Dr. Yu. We go over my symptoms as Dr. Yu measures my pulse in both wrists with his thumbs. He tells me that all of my problems are connected. Treatment must begin immediately. It’s going to take a long time. Am I ready to commit? 

As he begins outlining my treatment, I learn that I need to drink his herbal tea three times a day and take a round herbal pill once a day.


Week One

What follows can only be described as an unpleasant experience.

The treatment begins with bloodletting. Yes, you read that right.

He starts by pricking the skin in front of my swollen ears twice with a pin. He then places a suction over the pricked area and draws the blood to the surface. Then he does this again at the top of my spine, on the inside of both wrists, and on the back of my knees. This, they say, helps to open up the meridian lines and draw out inflammation.

Next, the acupuncture treatment begins. Two needles are placed in the back of my head under my cranium, two in the tender part of skin between my thumb and forefinger, and two behind my knees. I experience immediate throbbing and discomfort, but only on the left side of my body. He leaves me there for 20 minutes.

When the needles are taken out, the doctor pushes hard on those spots and then asks me to sit up slowly. I am immediately lightheaded. It felt like the room was moving away from me. Then I felt overwhelmingly tired and I wanted to cry. He asked me to sit for a few minutes and try to relax.

I leave while they are brewing my medicine and they tell me it will be delivered that evening. Since Dr Yu’s treatments aren’t covered under  health insurance, I end up paying NT$4,800 ($160USD) for my first session and a week’s worth of disgusting herbal tea.

Week Two

The following week, I go back to the clinic for another acupuncture treatment. This time, I feel like I am going to throw up. The smell of incense keeps my stomach rolling for the duration of my visit. (It turns out that I’m allergic to incense. One of 200+ allergies.)

When I sit up after the treatment is finished, I feel energized. I was up until 5am that day. I had so much energy that I ended up rearranging the kitchen cupboards in the wee hours of the morning.

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I’m starting to suspect that acupuncture might not be a good treatment for me. I’ve read that people who suffer from autoimmune disorders can react in different ways with acupuncture. It seems I’m one of those people.

Meanwhile, my symptoms are getting worse. My entire body was in overdrive. After that initial burst of energy, I barely had energy to leave my house the rest of the week. 

Perhaps this is not working.

Week Three

My third week of treatment came and went with similar results. This time, the acupuncture treatment was extremely uncomfortable. When I got home, I was emotional and fatigued. I got home at 5pm and slept through until 9am the next day.

After discussing things with my husband, we decided that I was just too sensitive to acupuncture, and I decided to stop that portion of the treatment plan and focus on the tea three times a day.

Let me tell you, the herbal tea was the worst thing I’ve ever had to ingest in my entire life.

It’s like drinking dirt. I had a very hard time keeping it down. Six weeks later, I was still having a hard time keeping it down. The tea makes my stomach extremely upset, and I feel queasy all the time. Certain smells sent me running for the bathroom. It was difficult for me to spend NT$4,800 a week on something that was making me so ill.

I kept telling myself that I must be crazy to spend that much money on bloodletting, acupuncture, and medicine that makes me  violently sick, but the doctor kept urging me to stick with it. It turns out I shouldn’t have been drinking that damn tea! I got an IBS diagnosis later that year.

By the end of March, I had spent NT$24,000 ($800USD) on medicine and doctor visits in the month of March. NT$20,000 went to the clinic, the rest of it went to my regular doctor appointments.

Week Six

I started to notice an improvement in my energy levels. The inflammation was down everywhere in my body, my ears were almost back to normal, and I was able to go back to the gym. I was still having massive problems with my stomach that started with drinking the tea. Was it worth it to continue?

Week Eight

My ears haven’t been this clear in over two years, and the skin rashes and eye infections are starting to slow down as well. Had time and rest helped me heal or is it the tea and treatments?

Has the NT$40,000 in cash that I’ve spent on my treatment been worth it so far? I’m not sure. There is improvement in my eyes and ears, and I’ve had more energy, but the problems I’ve had with my stomach haven’t been worth it.

Now it’s May and we’re here at World AS Day, and I have to say that I’m feeling ok, but I’ve also been resting hard for over eight months. During week nine, my husband and I decided that I should stop seeing the doctor due to the fact that his teas were making me violently ill. My husband thought I was nuts to spend that much money, brew tea, and then vomit it all up for hours afterwards.

This is when I decided to move to a clinic that is covered by my insurance.

I started seeing a doctor at the Taipei Chinese Medicine Hospital in Ximending. My visits and medicine are covered under Taiwan’s National Health care system. I pay NT$140 per visit and I’ve been seeing him since May.

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This ‘tea’ comes in a powder package and I haven’t experienced as much stomach discomfort.

My new doctor at the hospital speaks perfect English and he’s got the best bedside manner of any doctor I’ve met in Taiwan. (I still believe this to this day and it’s now 2021.)

He is also the only doctor to date that has actually touched my back during a flare to assess where the pain is located. I’ve been seeing him since May 2013 and I’m happy with the care I’m receiving.

One major mistake that I made is that I never told my rheumatologist that I was doing TCM treatments. I stopped taking the anti inflammatory medications that he prescribed in order to let the TCM work. That was a HUGE mistake because it allowed my AS to progress. 

When I finally let it slip, my rheumy asked me sharply if I’d kept up with the Western meds he’d been prescribing. When I admitted I had not, he said that untreated, my AS had progressed.

In 2014, I started experiencing a different sort of pain and that is when I received my fibromyalgia diagnosis. We never talked about why that happened, but I suspect stopping my Western medications, pushing through with work, and doing too much weight bearing exercise caused damage. I was also under a lot of stress being a new business owner and trying to keep my business going. Hello, fibro!

Seeing a TCM doctor has had its ups and downs. I liked the bursts of energy I got, but the energy was almost manic and there was no explanation for it other than ‘this is how you react to acupuncture’. The herbal tea in liquid form was a bad option for me. The powder mix was better, but I NEVER SHOULD’VE GONE OFF MY WESTERN MEDS!

However, TCM did seem to help my ears immensely. I’ve never had a problem since then and that’s great, because I experienced decades of chronic ear infections prior to TCM treatment. I’m very glad I don’t have to deal with that anymore, but I wish I had known better and had thought to tell my rheumy what I was doing. 

This is my veteran patient tip to you for this post: Make sure you tell your primary physician or specialist everything you’re doing. If you’re taking TCM, supplements, or doing a special diet, your doctor MUST know about it.

I was simply too new to AS ten years ago and too naive to know better. I regret that I didn’t say something because the end result is that I allowed myself to go untreated for AS and that resulted in my disease activity getting worse.

AS sufferers around the world will agree that relief of any kind from chronic pain and inflammation is a veritable gold mine; it’s meant to be cherished. 

You never know when life is going to give you a kick in the pants, so it’s important to try new things. Just be smart about how you do it and make sure your doctor is always informed. 

Finally, I’d like to mention that I know plenty of patients who have had great success with TCM. Everyone reacts in different ways, so again, it’s important to try new things, as long as you’re trying them and being smart about it.

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Post Author: Carrie Kellenberger

I'm a chronically ill Canadian who has been living in Asia since 2003. I moved from China to Taiwan in 2006. I'm an experienced businesswoman and have worked in many leadership positions in Asia. In addition to my own work, I've been writing professionally about Asia, travel and health advocacy since 2007, providing regular content to publishing companies and travel publications in Asia and North America. I started writing about my health journey in 2009 after being diagnosed with Ankylosing Spondylitis. In 2014, I was diagnosed with Fibromyalgia and ME/CFS, which came with other massive health issues. These diagnoses were the start of my journey as a health advocate and patient leader. Since then, My Several Worlds has been recognized worldwide as a top site for AS, fibromyalgia, and chronic illness by WEGO Health and Healthline.

26 thoughts on “Treating Ankylosing Spondylitis with Chinese Medicine and Acupuncture

    Milan

    (September 21, 2013 - 12:46 pm)

    Hi,
    You seem to be one hell of a fighter to fly across the ocean to treat for AS. And how have you been lately? Are you still treating with accupunture and TENS unit?

    Let me introduce myself. I have been diagonised as RA and AS back in 1997 and was treated with N-SAID and steoroids. That time I was advised for TCM by my fellow friends and this practice obviously new in my country (Nepal), I had a go as advised but didn’t went well. May be that could have been at the increasing moments of pain.
    Then, I tried ayurvedeic treatment, homeopathy, shammans; and worshiped deities as that could have or may obstructed the path of recovery. But it all went for nothing. The inflammation would derive pain and it would be no ordinary as you have experienced yourself.
    Now, tired of taking medicine and abusing body with its side effects, I have decided to give it a go for TCM and your article really inspired me. Like yours, my treatment is arranged and corroleted wtih panchakarma(part of yoga) along with ayurvedic herbal medicines, and the first three weeks were progressive and pain and inflammation were reduced to nearly one -third.
    But, as the physios were introduced, in fourth week, my pain and inflammation level rose (not back to square) but enough to restrict my mobility. Currently, I am in six week, after stopping physios throughout week five, my pain is as in week three.
    The therapist are urging me to start doing physios to manageble state but I am in dual mind as I will have to bear the pain and if not when and how will I get better as to have my mobility. I know, I won;t be as good as I used too, but moderate mobility for walking without cruches and support is all I expect.
    My TCM doctor has suggested as by yours saying it will take prolong treatment.and it has been five weeks already. I wonder how many more weeks may it take? As you have been advised for steroids, what are your drugs taking prescribtion? or have you dropped all of them after your TCM regime? Please, adivise me If you could.
    Thanking you
    Milan

      Carrie

      (October 19, 2013 - 4:32 am)

      Hi Milan,

      I’ve stopped doing my acupuncture sessions and I’m using traditional Chinese medicine and yoga along with my Western medicine prescription. I’ve been taking Chinese medicine since March 2013. I really don’t want to move to the next class of drugs unless absolutely necessary. It’s a real roller coaster, isn’t it? I hope you’ve been able to find some relief.

    Lisa

    (March 25, 2014 - 6:42 pm)

    Carrie I had no idea you were dealing with an autoimmune disease! For the past year I’ve had misdiagnoses that led to what one doctor here believed was autoimmune and incurable. It’s been chronic pain and inflammation HELL. This “mystery illness” is the main reason I didn’t travel over my winter break (*heartbreaking*). I was actually going through a rough bout of it while I was in Taipei but I pushed through anyway. It wasn’t the greatest holiday. Anyway, it turns out my doctor had it all wrong and I’m dealing with something that’s definitely curable. However, since I went almost an entire year treating the wrong thing, it’s going to take time. I never thought I’d be dealing with a chronic pain condition at 28/29 years old. It’s horrible when you look healthy on the outside but are really suffering. (Also, I’ve been doing acupuncture weekly and it helps. LOVE that it’s so cheap here!!)

      Carrie Kellenberger

      (April 4, 2014 - 2:39 pm)

      Sorry for the late reply, Lisa. I was diagnosed in 2009, and it has been a constant battle for good health ever since. I was suffering through a flare while you were here as well. You can tell by my puffy face and my lack of energy. I’m usually MUCH more energetic than the night I met you!

      Chronic pain sucks. I’ve tried everything from cupping and acupuncture to Chinese medicine, reiki, massage, and good old-fashioned painkillers. Nothing really ever takes the edge off it though. I also suffer from Fibromyalgia, and other auto-immune related illnesses.

      It sounds like you’ve got a proper diagnosis and you’re dealing with things properly now. It took over a decade for me to get a proper diagnosis, and to this day, I still get looks from people who think I’m trying to cop out of something.

      Carrie Kellenberger

      (June 10, 2014 - 9:04 am)

      Sorry, Lisa. I didn’t realize I missed replying to your comment. If you’re going through this, I really feel for you. No one really understands what it’s like to suffer from chronic pain and inflammation unless they’ve actually been through it. One of the things I struggle with constantly when I’m flaring is convincing people that I’m really sick. For example, last summer I flared for 63 days. One of the last big events I attended last summer was the Cirque du Soleil show, and up until then, no one had really seen me in a full flare. They were shocked to see me looking so ill, but two weeks later, one of my friends couldn’t understand why I wasn’t over it. I felt really pressured to go out and do something with them, but I simply didn’t have the energy or strength to do it, and then I had to go through explaining all of it all over again. It sucks. I’m glad that you were able to get to the bottom of things, and it sounds like you’re on the path to recovery!

    Shantelle

    (May 14, 2014 - 11:51 am)

    My husband was diagnosed with AS after 3years of pain. Chiropractic, massage, NSAIDs, acupuncture, exercise, and even narcotic pain killers gave him temporary relief. This week I learned about another therapy. Honey bee venom. Seems crazy but sting yourself with honey bees. Their venom has different properties than other bees. A friend of mine met an 80 year old man who was diagnosed with early onset RA and became wheelchair bound. Honey bees set him free and my friend knew him as an avid, active gardener and beekeeper who stung himself once a day. We have only just begun with my husband, but last night I had to almost carry him up our stairs and today his left SI joint was pain free after working through his morning stiffness. It is worth looking into. I wish you the best of luck!

    Vivek Nigam

    (September 21, 2014 - 10:49 am)

    Hi Guys,

    I am also suffering from AS. 3 years ago this disease was highly active in my body. I was completely on bed for almost 3 months. I got inflammation in my knees, shoulders, neck joint and hip joints. I was not able to sit even. I tried almost every therapy and all pathy’s. Nothing was working to me. Then i came to know about a herb and a vaidya who use to prepare medicine in powder form. I started taking that twice a day for 15 days. That too was not working , so i decided to stop that too. but after 2-3 days of stopping it i felt life was pretty good when i was taking that medicine. I started that again and in around 1-2 months i was in my office doing the same pathetic work again. My life started rolling again. I am continuing that medicine now also but once a day and 5 days a week. I am able to do all of my tough jobs, playing with my kids and bearing my wife.

    Vivek

      Carrie Kellenberger

      (September 23, 2014 - 10:10 pm)

      Thanks for dropping by and sharing your story, Vivek. I am really glad to hear that your treatment is working for you. Every pain free day is a blessing!

    Krista Sepp

    (November 18, 2014 - 1:36 am)

    Hi Sweetie, I’m 68 yr woman who has been through a WHOOOOLE lot in my life. What I have found to seriously help the pain is the mind. DON’T get me wrong. I have used my my Chinese/ Korean etc. They WORK! My daughter was grounded by the FAA & had to get her medical clearance ASAP. Cardiology shows serious problems with heart possible (stents) etc. Within 28 days she recievedher 1st Class Medical. Have 30 pages of test results. Lady at cardiac testing asked why was she there as even her urine was totally clear.Still is 2+ yrs still is. Our Asian DrLee @ Bejing Clinic Orlando Fl. Did Moxa, liquid formula & some acupunture cured her. I had both Menicus removed,wish I didn’t ,(accident case) so followed Lawyers directive. Anyway I have pix etc. Dr Lee did acupunture,cupping & formula. You should see what came out of my knees.even a piece cartilage. If hadn’t had help to get treatment,I would not be walking.. I was pain free also in hip spine neck.but those area need treatment. I had most ALL those things you mentioned I have plus& minus. Western medicine creates more problems. I am on Percocet helps pain,Gabapebtin for muscle pain helps. Insurance covers. Only reason not Dr. LEE,I DONT HAVE THE $$ Even though cheap to get treatments as I should. Plus I hate going by self. April is in Dallas,best caretaker.it is painful when u get serious treatment. Yr later I’ve had marvelous continued results. Law case so can’t say much. The mind thing is my point, when I’m traveling (free) pain different. At home soon as I stress even when I don’t know I am,lower back pain unsufferable. +++ other parts. Kidney Liver are ur engine & transmission. Had Papason in LA now deceased.learned this. I can tell stories galore about results 4 family.If u have right Dr. Even cancer can be cured. Mind work is IMPORTANT! I will b in tai pei 20 – 24. I want to see a Implant Dentist while there.( need gum treatment ,must hve)& a ulcer Dr.for Jen. Do u have any recommendations?we will b at crew hotel .would b great to meet if u want to.Once I get my suit $ I will b gung-ho TCM also korean. I have to stop now cz I can blah blah forever. LOL& can’t really get into details on line. PS gem healing is real also but always a person HAS to use mind to evacuate negative factions in body& mind. Hard! But works. Hollah back ! 20th Ishould b there.Not typical tourists,I’m European ,Chicagoan & southern. Any insights? Thanks later. Krista no Facebook twitter never.

    Mustafa Dündar

    (January 20, 2015 - 3:35 am)

    hello my name is Mustafa I am writing from turkey
    Unfortunately, I have 5 years ASI sick and I started using the latest anti-TNF drugs have tried many treatments but I want to overcome this disorder with far eastern herbal methods help me in this regard, please waiting for your advice ..

      Carrie Kellenberger

      (January 23, 2015 - 2:49 pm)

      Dear Mustafa,

      Thank you for your email.

      I have tried TCM, but to be honest, it only relieved a little of my inflammation. It didn’t come close to allowing me to overcome the disease. I do my best to control my symptoms through a clean diet, regular exercise (walking and yoga), and I try to get at least eight hours of sleep each night. I am really sorry to hear that you’re dealing with this awful disease. I wish you good health!

        Katie

        (January 30, 2015 - 2:27 am)

        Hi! Hearing your story is so moving. Thank you for sharing. The more of us that can share the more we can help. I too have AS. It took me around 8 years to get diagnosed. I have tried just about every diet out there but it was not until the spring of 2014 that I started experimenting with Paleo and Autoimmune Protocol. If you have not already researched the Paleo Autoimmune Protocol I highly recommend you do. I went from wanting to cry every day to living a normal life again. My recent check up in Nov 2014 showed normal blood work! I am pretty much pain free most days and my morning stiffness has almost entirely gone away. I do still have small flares from time to time but when I do its almost always attributed to a slip up with my diet. Anyway, just wanted you to know how much diet has helped me if its not something you have tried before. If you are interested my blog has my entire story as well as lots of recipes that comply to Paleo and AIP. I guess I should also mention I am and have always been med free. TNF blockers scare me to death! All the luck to you in your continued healing journey.

          Carrie Kellenberger

          (January 30, 2015 - 11:18 am)

          Hi Katie,

          Thanks for stopping by. I’m sorry to hear that you have AS too, but it’s great that you’ve achieved a healthy lifestyle. I have looked into the Paleo Autoimmune diet as well as other natural remedies and I will be sure to stop by your blog and read up on what you’ve accomplished. TNF blockers scare me to death too, but I haven’t been able to manage a med-free lifestyle. I’m currently on 1,000mg of Sulfasalazine, 250mg of Celebrex, and Tramadol to keep the inflammation and pain levels at bay.

    KartikeyaDinesh

    (March 1, 2015 - 2:10 pm)

    Hai I too an AS patient. I am currently taking infusion for AS. The infusion is Remicade 300mg per course. Now there is no pain at all but still my movement of neck is restricted. After taking the infusion for 4 times my ESR level drop from 105mm to 5mm per hour. Any advice for me because I still having the limitation of movement of my neck.

    mohamed sheriff

    (April 1, 2017 - 5:03 am)

    hello my name is sheriff written from India now my age is 29 last 13 years I have the ankylosing Spondylitis problem I try lot of treatment but any treatment is not supporting for me finally the doctor say you are hip joint is very critical so he suggest there operation but I am not interested that I hope for me without surgery any treatment please suggest and help for me now I take Acupressure treatment that is fine for me what do you say please reply soon yours lovingly Sharif

      Carrie Kellenberger

      (September 27, 2017 - 4:39 pm)

      Hi Sharif. Thank you so much for stopping by and commenting. I am so sorry to hear that you have AS. I wish I could make suggestions for you, but I’m not a doctor and I am not qualified to answer. I am still searching for my own answers. My disease activity is progressing quickly and to date, I haven’t found anything that really helps me. I wish you the best of luck and hope that you can find some relief soon.

    Aqeel

    (May 17, 2017 - 1:08 am)

    Hi, I was suffering from AS since 1990 but major pain started since 1996.
    Can you please suggest any treatment

    Thank you

      Carrie Kellenberger

      (July 11, 2017 - 2:08 pm)

      Hi Aqeel,

      I wish I could suggest treatment for you, but everyone is different and everyone responds differently to different medications. To date, I have only been able to manage my disease. There is no cure for AS. I just try to do my best to manage my time efficiently, minimize the impact on my body and make sure I get plenty of rest. I also have Chronic Fatigue Syndrome and Fibromyalgia among a host of other issues, so it’s important to stay on top of managing my day to day energy output. Good luck!

    Andi

    (November 16, 2017 - 9:15 am)

    Hi Carrie and all,
    Let me share with you my case, hmmm. Lets start with childhood being misdiagnosed for more than 10 years.
    AS, i’ve experienced 80% of it. It’ll affect 7 common areas who suffer AS.
    1) Eye – Uveitis (under control now)
    2) Ears – Fortunately i have no encounter this yet
    3) Heart – Heart sharp pain when my blood vessel got blocked (1 min)
    4) Lungs – Inflammation and causing pain.
    5) Nerves – Come and go
    6) Kidney and Prostate – Yes, inflammation as well.
    7) amyloidosis – Nope, luckily.
    Alright, let share with you guys my bone inflammation and abnormal growth of bone. It’ll affect bone like Chest front ,back, rib cage, shoulder joint, bowel, butt bone, pelvis bone, ankles, feet and toes. Usually it’ll last more
    than a week.

    Lets talk about cause of triggering and activation of AS:
    1) Environment – What i observed was Food,water and air (Air pollution) Example: 2nd hand smoke, non fresh air environment, moldy area.
    Uncooked water, Unfiltered tap water, soft drinks.
    Meats that injected antibiotic and hormone etc….
    2) Genes – HLA-B27 Positive
    3) Immune disorder or dysfunction – due to Klebsiella for one of the bacteria which has similar antibody towards our immune system, in layman term, it can swim freely in our body without getting attack from our immune defense system. (This is serious and hard to kill it)
    4) Metabolism – Low metabolism cause our body get rid toxic out of our body slower and helps to reduce 5%-15% of inflammation.

    Therefore, we AS people need to find our own source of information that what trigger it and find the root of the source before we can treat it under control. That’s what i do, i studied western medicine and seen over 100 of Specialists which follow their by book “protocols” NSAIDs, TNF, Pain killers with serious side effects which affect your kidney, stomach tracts and TNF tumor.
    Western medicine work like this, it treat surface of the problem, example: you get pain, eat pain killer by stopping your nerve by cheating oneself not to feel it was there, and not find what causing the pain, the root of the problem. (one example)

    So…. I move on towards studying tcm, study tcm is a bit complicated, it is not so straight forward by learning it. i am still on the process of learning tcm. TCM is a slow process which need to observe the change of dosage and herbs. TCM is a way of changing your body balancing mode in your body. Example: if you cold hands and feet every time – you’re cold body type. If your body always too hot, it relate to extreme hot and cold body. When there is extreme and out of balance, body will get sick and become chronic, tumor and cancer. That’s how tcm point of view. In Chinese tcm saying : All kinds of medicines contain at least 30% of poison in it.

    For myself, 13 years ago, i was Warm and Hot body type, and hope to live in a north pole as i could not take heat. 13 years later, i became too cold, cold hands and feets. this is what i meant by extreme. When extreme hot,cold or both. It’ll trigger AS.

    Exercise is important and this is tricky as what Carrie had shared ” boundaries between too much exercise and the right amount. If I’m feeling fatigued in the slightest bit, I don’t go to the gym. And I’ve really started to notice a difference between good pain and bad pain.”
    I also noticed this problem when i do weight training, i slim down from 70kg to 62kg, quite sad, my 6 pack abs is gone.

    Conclusion : we need to be our own doctor. Why? Because nowadays doctor don’t really have time to hear you out and treat patients like white mice and test on drug and herbs, A does work, try B, B doesn’t work, try C, in the end, we the one who suffer even more like kidney failure. find out more about our self (allergies), study more like me, read more, observe more.
    Diet – eat clean, don’t let our body get infected as it will trigger AS even more from what i have notice and experienced, Especially diarrhea.
    Eat more vegetables and fruits, deep sea fish like salmon, try to avoid fed fishes (i know it’s hard to difficult)
    Test on your Vitamin D blood test see whether is it deficient.
    Less Stress as it will worsen AS.
    Eat less soya bean, bread, Artificial products and avoid fast food.
    Eat a bit of healthy oil from walnut, pine nuts, avocado etc…. in a balance amount, not too much. Everything too much will get adverse effect.
    Balance diet ,exercise is a key to control AS.
    Oh yes, Shampoo and body wash products try to use organic and avoid SLS etc…. those you read and chemical wording that you don’t understand. (Avoid)
    I notice Kidney (Qi) weaken will also trigger AS.
    Lastly, Do not burn midnight oil, it will worsen AS (like me)
    That’s all i can share for now, if in the future i can fixed my AS, i will share with you guys and help you guys out. Let me study tcm books more and do experiment on my own body to test.
    As you know, find the right doctor is a key too.
    nowadays outside doctor just want to earn money and don’t really care about patient needs.
    Good luck to all AS patients.

    Jack Graham

    (March 7, 2018 - 9:59 am)

    Hi. I was diagnosed with AS about 38 years ago. Glad i found this site. I have many storys i will tell soon. Anybody ever heard of haritaki? This is my next venture. I ll talk to you all soon. I want to read everybodies stories first. Hope you are all kicking AS.

    Claire

    (April 10, 2021 - 4:17 pm)

    I think, as you say, that treatments and therapies such as acupuncture are so individual. I tried acupuncture a few times for migraine (it’s even endorsed as a therapy by the NHS) but it didn’t help me. The first treatment I actually felt far worse afterwards, and was later told it isn’t always well tolerated by those with vestibular migraine. I am curious as to whether it could help with joint pain though.

      Carrie Kellenberger

      (April 13, 2021 - 3:40 pm)

      I think it’s always worth it to try. Although now that I’m 13+ years into this, I’m less apt to try alternative therapies. I think that has a lot to do with the extreme fatigue and weakness I have all the time. I don’t want to do anything to make it worse and would rather ‘save the spoons’. Besides, I feel like I gave acupuncture a really fair shot and tried it several times across many years before finally giving up on it. Others swear by it though!

    Alison Hayes

    (April 11, 2021 - 8:36 pm)

    Carrie, thanks so much for that vivid discription of your experience! You are quite committed – impressed how long you stuck with it, despite everything! I remember overcommitting to a neurochiropracter’s treatment plan. I spent months trying to do these weird exercises that were supposed to mimic infant/toddler growth steps . They needed to be done hourly and took me 20 plus minutes to do because they flared my movement symptoms. They also brought back my urinary incontinence issues! Eventually, I gave up, but I gave it several months a few times.
    I really appreciate your honesty about the whole situation, and your insistence that trying new things is absolutely worth doing, as long as you are smart about it!

      Carrie Kellenberger

      (April 13, 2021 - 3:42 pm)

      I hope it wasn’t too vivid! I wrote this post in 2013 after going through all of this and the entries were kept here in a draft until I got through all of it. It was good for me to look back on this last week and remember that I’ve tried many things! It’s also a good reminder that things don’t work right away, if they work, and that it’s important to commit to something fully if you’re going to try it. That way, you can say you gave it a fair shot later if it didn’t work! Always good to hear from you, Alison!

    Sheryl Chan

    (April 15, 2021 - 12:20 pm)

    I love how you explore various therapies for chronic pain, I truly believe there can be benefits from a mix of things, too. Never know til you try! (Unless of course, it’s contraindicated e.g. my blood clotting disorder and cupping therapy.) Do share more experiences I’d love to learn more about them!

      Carrie Kellenberger

      (April 15, 2021 - 2:01 pm)

      Thank you! This was back in the days when I still had the strength to try new things. The thing I benefit most from now is reflexology and that’s because my muscles are so tight, I can actually feel a huge difference after a painful reflexology session. Some pain with it, but I do gain. I’ve also found my pain threshold during these sessions is very high because if I take newbies who want to try the Taiwanese experience, they can’t handle it, especially most Westerners who are visiting for the first time. LOL. But I think maybe you can’t do that either because that would cause bruising, right? I read somewhere that APS is listed with AS and fibro with some similarities and I meant to send you the article just out of sheer interest! That was the first time I’d seen APS listed with my illnesses!

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