My Ankylosing Spondylitis Story by Carrie Kellenberger

My Ankylosing Spondylitis Story by Carrie Kellenberger

Well, where does one begin? Yes, things have been moving slowly over here in Taiwan. I haven’t felt much like blogging lately. After two years of being unable to convince doctors that there is something wrong with me, I’ve finally had success.

I was diagnosed with Ankylosing Spondylitis in February 2009. Since then, I’ve had to cut back on all my extracurricular activities and classes. I’m focusing on finding some way to manage the pain and fatigue that comes with this inflammatory type of spinal arthritis.

The following information about Ankylosing Spondylitis was taken from Medicine Net. It has been a great source of information for me. There’s comfort in knowing that other people are going through what I’m going through.

Ankylosing spondylitis is a form of chronic inflammation of the spine and the sacroiliac joints.  Chronic inflammation in these areas causes pain and stiffness in and around the spine. Over time, chronic spinal inflammation (spondylitis) can cause the vertebrae to fuse together, ultimately leading to loss of spine mobility.

AS is also a systemic disease. It can affect other tissues throughout the body. It can cause inflammation in or injury to other joints away from the spine, as well as to other organs, such as the eyes, heart, lungs, and kidneys.  In my case, I’ve had aching back pain for years, as well as problems with my shoulders and knees.

Symptoms of this disease vary greatly among sufferers of AS. Others can go for years without being properly diagnosed. I’ve experienced classic symptoms of AS for over ten years.

The Spondylitis Association of America has an informational video on this page that talks about what to look for with your chronic back pain. The text below is from their site. It is one of the best sites on the Internet for information. The SAA is the reason why I was able to get help so quickly in Taiwan once we knew what I was dealing with.

Could Your Chronic Back Pain Be Caused by Ankylosing Spondylitis?

Only a physician can diagnose ankylosing spondylitis, but the following five questions can help determine if your pain and symptoms are characteristic of inflammatory back pain, which is strongly associated with ankylosing spondylitis. This quiz is not a diagnostic tool, but is created for informational purposes.

My Ankylosing Spondylitis Story by Carrie Kellenberger
February 2017 when I received my CRPS diagnosis.

For more than a decade, I was waking up in the morning in tremendous pain. I was stiff, unable to move, my body would be throbbing everywhere. It took ages for me to get out of bed and start moving, and I had days when I’ve been unable to walk because my back and legs hurt so bad.

At other times, I’ve woken up and been unable to lift my arm or turn my neck.

I get tired easily, and there are days when it hurts to sit. I get severe stinging pain in my lower legs. My legs felt like someone was stabbing them with a blunt knife and then, after a while, my legs would go numb. I had swelling in my knees that would go up and down every four of five days.

My back pain was out of control.

When I think about how bad it is and how long I thought it was due to something else, I feel so much regret. If I had been treated sooner, maybe things would be different for me now.

It amazes me to think of the excuses I was able to make for my illness. It amazes me that I’ve felt like crap for so long and was told repeatedly by many doctors that what I was experiencing was normal.

Acute, chronic pain is not normal. It's a sure sign from your body that something is not right. Click To Tweet

I tried not to complain too much or too loudly. I was accused of being a hypochondriac. People trivialized my pain and made me feel like I was going crazy.

It was NOT in my head. Ankylosing Spondylitis was right there all along. My silent partner in pain. My torturer was me. My body was the betrayer. Click To Tweet

Now I’m finding out that I’ve had Ankylosing Spondylitis for years and I was untreated for it, which means the damage was already done by the time the doctors figured out what was going on.

My life would be different if we had caught it early. Maybe I’d still be able to run and dance. Maybe I wouldn’t be locked into a wheelchair or have to depend on a cane so much if we had found it earlier.

It’s awful knowing that in a desperate search for answers, I convinced myself that the fear and the pain was just a normal part of life that everyone experiences because doctors told me there was nothing wrong with me.Piss On Akylosing Spondylitis

All of this started in my early 20s. I was working at a jewelry store in Ottawa, Canada as a store manager and saleswoman, and I suffered low back pain, problems with my shoulders, mysterious swelling and all-around feelings of malaise.

Like every young person that age, I led a fairly active social life, but I always felt that there was something wrong and at times people made me feel like I wasn’t allowed to feel this way or they thought I was making it up.

After all, I didn’t really look sick. I just felt awful all the time.Ankylosing Spondylitis

I remember showing up at the airport one morning to meet my boss because he was flying me to Toronto to deal with a new store opening.

It was an early morning flight, I was super-stiff and feeling very nauseous, and I remember him looking at me in the airport and rolling his eyes. ‘She’s sick again? Has she been out all night?

I could just see the accusation in his eyes. He wanted to know how much of a bender I’d been on the night before.

I’ve noticed this reaction is a common reaction that many AS patients encounter. Disbelief. We look normal, so how can we possibly be sick?

How could someone so young be in that kind of pain with no visible illness or injury?

Since moving to Taiwan, I’ve experienced pain in some form or another every day. At first it was mildly annoying. I had pain in my back, shoulders or legs, and I felt stiff. I also experienced unexplainable swelling in my limbs.

Within two years, I was waking up in extreme pain every other day. Some days, I couldn’t get out of bed.

John and I first realized that there was something really wrong with me in 2008. All year, I had been experiencing a stinging pain in my calves that felt like bee stings. My knees would swell up and go down, sometimes reaching the size of softballs. My back felt like it was on fire.

It didn’t matter whether I was sitting, lying down or standing, the pain was intolerable. I cried every night going to bed and then I’d cry again when I woke up.

We got married in December 2008 and in February 2009, less than two months after we got married, I woke up to horribly swollen knees. My back felt like it was twisted. I couldn’t stand up or sit up.

I developed a fever that lasted all weekend and John finally decided we needed to go to the ER. They drained my knees there and I wasn’t able to walk for about three days. I remember sitting in a wheelchair in the ER and I kept moving in my chair. My husband asked me to please stop moving, but the pain was so bad, it felt like if I didn’t move, I was going to die. I’ve never felt pain that bad before.

 

Autoimmune Flares

Taiwan Adventist Hospital got back to us within a matter of days with results from my labs and they referred me to a rheumatologist at National Taiwan University Hospital (NTUH).

They suspected I had something called Ankylosing Spondylitis, but they didn’t have anyone at Adventist who could help me, so we moved to NTUH where I spent the next three years being treated.

I started taking Sulfasalazine to help with the inflammation, but my rheumatologist felt it might be weeks or a few months before the medicine kicked in and started helping. I spent the rest of 2009 hobbling around on a cane and keeping my knees wrapped up.

We spent our honeymoon in Singapore four months after my diagnosis, and I used my cane or a wheelchair for most of that trip.

In one way, it’s a relief to finally know what’s going on. On the other hand, figuring out how to deal with all of this has been rough. I cry almost every day. I get angry and frustrated easily.

My life is full of good days and bad days. I look forward to the good days and fill them with as much joy and fun as I can. I deal with the bad days when they come along. This isn’t going to stop me from living my life to the fullest extent.

My quality of life is ok. I’m not in a wheelchair full time yet, but every year that I’ve had this, I’ve been able to do less and less activity. This isn’t all related to Ankylosing Spondylitis. I was diagnosed with several other autoimmune issues after I got my AS diagnosis. When we put our family history together, we realized everyone in my immediate family has some type of autoimmune illness, and inflammatory arthritis goes back on both sides of our family

I can walk about 30 minutes at a time without having any adverse effects. The doctors insist that I will eventually be able to return to my active lifestyle. I hate having to pace myself this way, but it is necessary.

The lesson in all of this is to listen to your body and don’t be afraid to look for and pursue answers. No one knows your body better than you do.

Make sure you watch the video I listed above on the Spondylitis Association of America website if you have had chronic and persistent back pain for more than three months.

The best thing you can do is stay vigilant, keep looking for answers, and don’t be afraid to move on to another doctor if someone dismisses your pain.

Post Author: Carrie Kellenberger

I'm a chronically ill Canadian expat who has been living abroad in Asia since 2003. I moved from China to Taiwan in 2006. My husband and I have owned our own business in Taiwan since 2012. In addition to my own work, I've been writing professionally about Asia, travel and health advocacy since 2007, providing regular content to several publishing companies and travel publications in Asia and North America. Follow Carrie on on Twitter @globetrotteri or on Instagram at https://www.instagram.com/carriekellenberger/.

65 thoughts on “My Ankylosing Spondylitis Story by Carrie Kellenberger

    marcus

    (May 24, 2009 - 10:35 am)

    i hope this is the first in the process of getting better for you

      Carrie

      (May 24, 2009 - 12:53 pm)

      Marcus and Michael. Thanks for your thoughts.

    Expatriate Games

    (May 24, 2009 - 10:43 am)

    Hang in there Carrie… your friends all wish you a full recovery and a pain free life.

    Barbara Dale

    (May 24, 2009 - 12:09 pm)

    Finally ….. a diagnosis …… now that you know what you’re fighting, the fight for good health can begin!

      Carrie

      (May 24, 2009 - 12:54 pm)

      Hi Barb,

      Yeah. It’s only taken years. And yes, I feel much more focused know that I know what I’m up against. It’s a good thing I’m from the Marshall family. We try not to take things lying down for too long. 😉

    Cahleen

    (May 24, 2009 - 12:27 pm)

    My situation is a little different because it’s more mental than physical, but I went through a similar thing. I had horrible, debilitating anxiety, panic attacks, and insomnia and it took forever to finally find the right medication that worked for me. With things like anxiety and depression, people are always telling you just to “not think so much,” which makes one think that they’re just crazy or making a big deal out of nothing. I’m glad you stuck to your guns and finally found out what’s wrong! When I went through my ordeal, the only thing that got me through was thinking these things:

    1. This feeling IS NOT PERMANENT. It CANNOT and WILL NOT last forever. (Maybe your condition is permanent, but the feeling like absolute crap part should only be temporary.)

    2. I AM NOT BROKEN. I’m human, so I deal with a bunch of crap that goes along with being in a human body. I have my problems, other people have theirs.

    3. Thank God for meds!!!

    I hope you feel better soon, Carrie. Take advantage of this down time to learn about something interesting that you just never had time to do before.

      Carrie

      (May 24, 2009 - 12:57 pm)

      Hi Cahleen,

      Thanks for your support and encouragement. I’ve suffered from panic attacks before. They are NOT fun. It’s funny, but the three things you mentioned are what go through my head too. There always has to be something to look forward to when dealing with this kind of stuff. I try to stay focused on the positive things happening right now. And yes, thank God for meds! 🙂

    michelle G

    (May 24, 2009 - 1:01 pm)

    I am trying to figure out what I have, I am in pain alot and very tired. I wake up in pain and go to bed in pain as well. Recently it has started in my ankles, and I can’t walk very far because of the pain.

      Carrie

      (May 25, 2009 - 5:33 am)

      Michelle,

      I know how frustrating it is to feel this way. Keep looking until you get the answers that you need. There’s nothing worse than feeling terrible and not knowing why, especially if it is a long-term thing. Based on your comments and emails, our symptoms sound quite similar. Perhaps you should get checked for AS. A simple x-ray of your pelvis and lower spine can determine this and put your mind at ease.

    WildJunket

    (May 24, 2009 - 1:13 pm)

    Carrie, have faith. Sorry to hear about your illness, but I’m sure with your friends and loved ones, you will get through with it. Let’s thank God you finally got a diagnosis! I’ll see you in Singapore pronto!

      Carrie

      (May 25, 2009 - 5:34 am)

      Thanks Nellie. I’m looking forward to seeing you in Singapore.

    Craig Ferguson

    (May 24, 2009 - 1:22 pm)

    I’m both sorry to hear it and happy to hear that you have a firm diagnosis. All the best to you. If there’s anything Selina and I can do, let us know. Best wishes.

      Carrie

      (May 25, 2009 - 5:36 am)

      Thanks Craig. At least now I know why I’m hobbling. One benefit to all of this are the photos I’ve been taking. I’m surprised at what comes my way when I’m sitting quietly. I’ve really been enjoying the parks in and around Taipei. 🙂

    krzysztof

    (May 24, 2009 - 5:03 pm)

    It must be hard to resign for all these things which you like. However the best news is that you will be able to return to your active lifestyle. I hope the pain won’t be back persistently. Besides Cahleen has absolutely right. This situation isn’t permanent.
    What was really annoying – your words weren’t convincing the doctors. Of course it isn’t general but sometimes doctors aren’t able to hear a patient…
    Anyway you have the answer for the question: what’s wrong with your body. Getting well needs a bit time but I hope everything will be fine soon. Take care!

      Carrie

      (May 25, 2009 - 5:39 am)

      Hi K,

      It has been difficult. My mom has always told me that I go like a “bat out of hell”. It’s been hard to let things go, but on the other hand I’m relieved as well. I slept my whole Saturday afternoon away this weekend and felt really good yesterday. So, learning to listen to my body’s needs have been a good lesson in patience.

      Although it’s been frustrating, I keep thinking that I’ve managed quite well over the past ten years despite these problems. That in itself is an indication that life will return to normal one of these days. When I’m not feeling well, I stop for a few days and after a while, things are bound to become normal again.

    MJ Klein

    (May 24, 2009 - 5:10 pm)

    Carrie, i hope your story can help others to have the courage to press forward to find the root cause of their own aliments and not just accept pain as a normal way of life. it isn’t.

      Carrie

      (May 25, 2009 - 5:40 am)

      Hi MJ,

      That’s why I wrote this, and within a 24 hour window I’ve received three emails from other people who suffer from this condition and one comment from a young woman is exhibiting the same symptoms. If my story helps then my goal is fulfilled. Thanks to you and HC for all your support and help over the past year. You’ve both been incredibly kind and amazing friends!

    June

    (May 24, 2009 - 9:35 pm)

    I do hope you’ll get better Carrie. Just hang in there; it’s slow but sure progress toward recovery. Take care always.

      Carrie

      (May 25, 2009 - 5:41 am)

      Thanks June. We’re heading to Singapore at the end of this week so I’m thinking that our normal protocols for traveling will change, but we’re looking forward to working around these problems and enjoying our vacation.

    Onedia

    (May 25, 2009 - 12:30 am)

    Carrie, how dreadful. I hope your progress continues smoothly. I can empathize with you about taking the recovery at a pace that is right for your body even though is is awful for your mind to slow down. Keep your head up and eyes on the path ahead. I will send positive energy your way.

    O.

      Carrie

      (May 25, 2009 - 5:42 am)

      Thanks very much for your kind message Onedia. Things are finally starting to look up.

    Stevo

    (May 25, 2009 - 2:24 am)

    Carrie: I’m glad you finally got some answers. Being sick in Asia is difficult even with minor ailments. I can only imagine what you (and John) have gone through.

    I hope all gets more manageable from here.

      Carrie

      (May 25, 2009 - 5:44 am)

      Hey Stevo,
      Being sick and away from everything you know and everyone you love is really tough. My husband has been amazing. He’s pushed me to keep looking for answers even when I haven’t felt like it. This is not the way we envisioned our first year of marriage to be, but I’m thankful that I have John in my life. He’s really great at making things seem better and never fails to show me how much he loves me.

    roentarre

    (May 25, 2009 - 8:24 am)

    I am so sorry to hear about this. This is a very treatable condition where prevention to get bamboo spine and pulmonary hypertension through pulmonary fibrosis are the key to maintain a good prognosis.

    Salazine can potentially cause neuropathy and agranulocytosis where it requires close monitoring.

    I hope that you maintain good spirit and keep yourself positive. You will enjoy your life to the fullest I am sure

      Carrie

      (May 25, 2009 - 1:38 pm)

      Roentarre,

      Thanks for your thoughts and advice. My doctor is keeping a close eye on me, and has seen me each week to be sure that I’m not having any adverse effects to Salazine.

    kim

    (May 25, 2009 - 9:59 am)

    Hi Carrie, I hope you’ll start getting (and feeling) better soon! I can only imagine how frustrating this situation must be for you.

    My mom’s had a similar experience – for years she’s been suffering from backpains, headaches and ‘a lot of murmur noise’ in her head. For years doctors have said that they couldn’t find anything, while the pains got worse and worse (luckily getting her spine ‘cracked’ regularly by a chiropractor helps a lot). Finally my dad pushed her into contacting specialists herself (in theory you never contact them yourself here, you always get referred by your doctor) and now they’ve diagnosed her with both a hernia and arthritis (a ‘pinched’ nerve causes the headaches and noise). Now that she finally knows what’s wrong at least she can have the proper medication, and that’s a big relieve already.

    Go easy on yourself & pamper yourself a bit, you deserve and need it 🙂

      Carrie

      (May 25, 2009 - 1:40 pm)

      Thanks, Kim. I hope your mom starts to feel better soon. John and I are heading to Singapore later this week for some R&R. I’m thinking some time at the spa might be just the thing to get me back on track.

    Fili An

    (May 25, 2009 - 2:56 pm)

    Oh wow, can’t imagine what’s that like 🙁

    Hang in there.

    Graham

    (May 26, 2009 - 8:18 am)

    I’m so glad you finally got all of your fears and doubts answered. It’s certainly not good what you have, and what you will have to deal with in the future, but it is good that you know what the problem is and can now begin to tackle it. Growing up with a very stoic father (he choose to crawl around on his knees for three days instead of going to the hospital after an accident) I am no stranger to putting up with aches and pains. And I rarely ever complain about it, except in passing. Your story is a lesson to me–to all of us really–that when you think something is wrong, you should stand by your instinct and keep pressing it, no matter what the doctors may say.

    Good luck on your road to recovery. My thoughts are with you.

      Carrie

      (May 26, 2009 - 2:36 pm)

      Hi Graham,
      I wonder if all men are cut from the same cloth? My father and husband are the same – neither one will go to a doctor unless it’s a life or death situation. 🙂

      I’m glad that my message is getting across to people. This was my intent all along. Thanks very much for your support and your emails!

    Sjr

    (May 26, 2009 - 1:24 pm)

    Hey Carrie – P.M.A babe

    Ya know that ClinicalTrials dot gov has 83 studies open in various stages for the treatment of AS. Some of them may end up slowing or stopping the progress of the disease so who knows what tomorrow will bring right? The EULAR meets on June 10 and that’s something to keep an eye on. A ton of money is being pour into RA treatments because of the increases in the number of people being diagnosed with it.

    Anyways, I would not be surprised to hear that in two, maybe three months from now that your quality of life is better with the pain gone.

    Tale care – peace out – the best is yet to come!

      Carrie

      (May 26, 2009 - 2:39 pm)

      Hey SnorkyJr!
      I wasn’t aware of any of these clinical trials. This is still all so new to me. I’m amazed at the number of links and advice that are coming from people all around the world. I really hesitate over whether I should post or not, but I’m glad I did, if only for the outpouring of support that I’ve received. I’m blown away by everyone’s thoughtfulness and kindness.
      I’ve been quite lax with Twitter lately, but I’ll be sure to send you some good links when I get back from Singapore. Peace and love!

    Eric Mesa

    (May 26, 2009 - 5:16 pm)

    Sucks about teh illness, but now that you have a diagnosis you can take the steps to get better!

    andre

    (May 27, 2009 - 8:56 am)

    Carrie,
    We’re really saddened to hear about this but at the same time glad you have found an answer and can focus on it. Keep your head up. Knowing you, this isn’t a showstopper and you will continue to live life to the fullest. If there’s anything we can do or if you ever need anything or help, please do not hesitate to let us know.

      Carrie

      (June 3, 2009 - 1:30 pm)

      Hi Andres,

      Thanks for your kind words of support. Every day things get a little better. I should have my strength back soon!

    jen laceda

    (May 27, 2009 - 6:57 pm)

    You are so brave in sharing your story to us. It must be rough, but you seem to be a tough woman, with unwavering faith, resilience, and tenacity. This should be all the more reason to live life to the fullest, right? 🙂

      Carrie

      (June 3, 2009 - 1:32 pm)

      Thank you, Jen. That’s really kind of you to say. BTW, welcome to My Several Worlds. This is a first visit for you, isn’t it?

    Erica

    (May 29, 2009 - 7:42 pm)

    I’m sorry to hear about this, Carrie. I can’t even imagine what a struggle it must have been to go through this, searching for answers without knowing what the real problem was. I’m glad to hear that you finally got properly diagnosed and I wish you all the best!

      Carrie

      (June 3, 2009 - 1:57 pm)

      Thank-you Erica.

    David

    (June 3, 2009 - 12:49 pm)

    Hi Carrie, it’s been a LONG time, too long in fact. It’s also been a long time feeling crappy and we all are very happy that some answers have come your way. Speaking of “come your way,” I will be moving to Taiwan in July. Just wanted to let you know and hope that we can meet up for some catching up. The memories of Changchun are as vivid today as they were years ago when we first met. I have nightmares re-living Shu laoshi dancing at Pierre’s wedding!!

      Carrie

      (June 3, 2009 - 2:09 pm)

      Hi David,

      Wow. Two great surprises – a visit from you on MSW and I get to see you in person in July. I’m so excited! I’ll shoot you an email and let you know how to get in touch with me. You just missed David Akast. Carlos was supposed to come last week, but wasn’t able to at the last minute. I was hoping for a trip down memory lane, but I can wait until July. Let me know if you need any help with anything or if we can keep an eye out on accommodations and postings for you. See you soon!

    Joanna

    (June 5, 2009 - 5:01 am)

    Your story is courageous and brave Carrie. I am glad to read that you are sharing this experience with others as you are not alone in this. While it is hard to be in pain at least you now know what your body is going through and are getting the help you need. Once you have found the right routine for your exercise and mobility I am sure you will be feeling 100% better. At least now you know how to tackle the problem instead of having it tackle you. Lots of love,

    Jo

      Carrie

      (June 7, 2009 - 3:23 am)

      Jo,
      I owe you a big thank you for putting up with my constant frantic phone calls and for giving me so much love and support. I’m blessed to have friends like you and Claire!

    Robinbath

    (June 8, 2009 - 11:03 pm)

    I have had AS for 45 years, diagnosed 27 years. understand where your coming from.
    I have found joining an AS support group really helpful early on – helped with the anger stuff and the practical advice, meds, excercise, morale, who the good doctors were etc.
    Getting the right anti-inflammatory is important – there are loads to have ago at; then getting to grips with pain relief and its limitations.
    There is life – even a good life with AS.
    Best of luck.

      Carrie

      (June 9, 2009 - 10:14 am)

      Robin,
      Thank you so much for sharing your thoughts and your story. I’ll look into some of the support groups. Do you know of any online? I really need to learn how to deal with the anger and frustration, and I would also like to learn more about food and exercise. Thanks again for commenting. There’s peace in knowing that I’m not alone and that I can look forward to better days.

    Jon ovington

    (October 7, 2009 - 11:37 am)

    Hi there Carrie,
    I Just happened to stumble across your blog thingy here, for no particular reason. But what I have to write you might find interesting. I have AS as well, had it for what seems like years, and yes it is a real sod. I have been through a lot of clinic doors and hospitals, i live in Scotland. I am a bad case of AS for sure, I used to be 5′ 9″ but my height has decreased by a whopping 14″. My spine is unrecognisable on the scans, and x rays! My neck is fused, and leans forward a bit, and to the left, and by spine is tilted forward as well. I have had two hip replacements, one shoulder op, a foot operation, and had surgery on fingers on the left hand, oh yeah, and my toes are all over the place.
    But I have 2 great kids, before I got the As or even knew about it, I was married, and had family you see, ( I worry about the kids getting it, but there is a chance they won’t and anyway, the treatments are improving. ) They are both at University in Glasgow now, but the condition cost me my marriage, 1 years married, but it changed my appearance so much, my wife left. Is that selfish? maybe, but look at it this way, she is 5 years younger than me, and is it fair to expect she spends the rest of her life looking after me, and having a lot of activities a no go area. No it isn’t really, she has a life to live, and anyway I am quite happy now.
    But look, back to the interesting bit I mentioned. Believe me I have tried a load of medications, a ot of them work a bit, but not well. I have settled now for Zydol, which is tramadol hydrochloride and I have a heavy dose of these every day, around 300mgs, But NOTE these things can be really habit forming, and I have a dependency on them now. They are an opioid, now the company that makes them says dependency is rare, I would doubt that. Bt it is in their interest to play it down of course. It works well, some folks it reacts to, but some seem ok with it. It will kick the soreness into touch thats for sure, but I found I took more and more to keep on top of things, hence the dependency. Use them sure, but be careful not to ovedo it. I also take a non steroidal anti inflammatory, diclofenec, a lot of these are similar, they work, to a point, but nothing startling. The last and the most impressive thing I want to tell you about is the best.
    NOW THIS IS IMPORTANT YOU MUST READ THIS IF YOU WANT TO GET THAT PAIN SHIT OUT OF YOUR LIFE. I am not kidding, I noticed one of your previous replies said there is a lot of work going on in the labs to try and find a good med for AS well it is available now. But it is expensive, of course. I am really fortunate, I get it in Scotland free. On the National Health in the UK I qualify for it. Let me say that if I were you, and I knew I could get this in a certain country, I would move there in order to get it prescribed. You might have read about them, No one so far here has mentioned his drug. It is known as an anti TNF which stands for tumour necrosis factor. It works at the molecular level, interrupts the signals where the inflammation occurs, and stops the pain. And this stuff really works. I take this only once a week, by injection, sub cutaneous, but it is easy, in the thigh for instance. Iw as concerned at first about giving my self a jab, but it is easier than I thought, and I can get it so it doesn’t hurt, if I jab a bit of skin for instance and it is sore, I shift the needle to find a less sensitive spot, sometimes I don’t even feel it.
    The one I take is called ENBREL Take a note of this, as it can change your life. There are one or two others, but their names escape me. I was on the list for this stuff when it first came out. It has only been available for a few years here, and the UK seems to be at the forefront of the technology. Before I took his, I was completely knackered. The marines call it FUBAR,
    **UCKED UP BEYOND ALL RECOGNITION. I felt bad, sore, and bloody miserable. I could barely walk some days, and I was tired as hell. I had to quit working.
    Now listen, your condition may well not go as far as what I have had. Usually the female gender fares better in AS. Apart from the fact that less females get it in the first place. So what you read, might sound a bit disconcering, but it might not happen that way in your case. But one thing I am certain of, if you can get hold of this medication, it will put the brakes on it. If I had had Enbrel when I was first diagnosed, it would never have become so debilitationg, thats for sure. It is all the inflammation that creates the pain, that creates the deformity. Cut that out, and things will be a lot better, not least that you will be able to function. Believe I was so sore some days, and just like you mornings were the worse. When I sneezed at one point, until the ribs fused up, it hurt like blazes. Plus it made me irritable and grumpy, it wasn’t easy to live with.
    So, that must be your mission now. Track down this drug. Enbrel, insist on it. It is the ONLY thing out there that will actually make a difference. As I said, if it isn’t available where you are, and that tends to be the case. I was told that I was extremely lucky as it was available in Scotland, but not in England. That was then, it might be available in England now, I am not sure. The NASS is a good site as well, they will have a lot of information available, the National AS society, based in London. If your As gets worse, or just stays at an intolerable level, I would seriouslty think about moving to where it was available. As I said it is expensive, I get about 3 boxes delivered every couple of months, in a refrigerated box, it is stored in the fridge as it deteriorates quickly apparently. That contains about two months supply, and I believe the value of that is in the thousands of pounds.
    Well, I hope this helps, I wish I had had a line like this thrown to me when I was atthe early stage, but then it wasn’t available anyway. So, in the mean time, good luck, it can get better, if you want ot mail me direct you are welcome to do so. ziggypuss@btinternet.com
    Oh yeah, btw. Now I am totally active, walk no problem, drive the car, not tired, life is pretty much ok.
    🙂 JonO

    Jon ovington

    (October 7, 2009 - 11:49 am)

    Oh btw, I forgot to mention, the anti tnf treatment is effective. I have heard a lot of success stories, but I wonder if it works for everyone. I hope so. Also there is a slight possibility of contracting Tuberculosis. Not sure why, but it is a small risk I am told. Having said that, this can be treated these days, and personally at the point I was at I couldn’t have cared less. I needed a regime that would work, if TB cropped up, well, I would deal with that if it did. Besides, they monitor the meds with blood tests, and if anything shows up, they just stop the medication, or try another anti tnf.

    Just thought I should add this 🙂

    JonO

    sue

    (October 8, 2009 - 4:48 pm)

    robinbath did u try enbril? my hubby is the worst he has ever been and they are going to talk to him about it,,,he would never go to a group meeting…he wouldnt sit that long!!!….thanks

    Stephen Chappell

    (April 18, 2010 - 10:57 pm)

    Carrie –

    I just stumbled across your blog while doing my usual searches on AS. I, too, have the disease and have been dealing with it since my 20’s. And just like you, I find all sorts of reasons for the horrible back pain, etc (I also have psoriatic arthritis, PsA, so that confused some of the doctors, since it affects nearly *all* other joints, including my jaw – jeez!).

    I’m in the advanced stages, but … the rheumatologists are really amazed that I don’t show massive degeneration of the spine. There’s a reason for that. Couple of things that I’d suggest to anyone who suffers from AS or PsA:

    1. Do *not* expect your GP (general practitioner) to know enough to combat AS. This requires the big guns, and only rheumatologists should be treating you.

    2. Salazine is an older drug and effective for inflammatory bowel disease, and it’s never going to improve your condition in the long run. It can help a bit, but it’s like plugging a finger into a dam that’s about to burst. In my opinion, a person needs to be aggressive with this disease, or it will continue to progress and start destroying bone and quality of life. You sound like you’re farther down the road with AS, and Salazine may not be able to give you that quality of life.

    3. Jon is right – you should at least look into the new DMARDs/biologics, which suppress the TNF (tumor necrosing factor). Right now, they’re the ‘big guns’ – they can potentially arrest the disease and give you a normal life. But they’re very expensive. I’m currently on Remicade (Infliximab) and after 6 weeks have noticed big gains, I’ve cut my NSAID use by 60%, my pain med use by over 50%, etc. I’m looking to eliminate those drugs entirely within the next couple of months, once we increase my dosage. It’s up and down right now, but when the drug is working strongest, all of my symptoms are nearly gone. After nearly 30 years of suffering from this stupid disease, that’s a blessing. I’ve also just started taking Arava, but … that does a number on my guts, so I’m not sure I’ll continue. I’ll give it some time.

    4. Finally, the reason that I’m showing so little spinal/joint damage, even though I’m in an advance stage of AS … I’ve been fortunate enough to benefit from lots of exercise and weight lifting. Exercise – even moderate amounts – have been shown to reduce AS pain and progression. My body has never worked well ever since I had surgery to correct a twisted gut condition when I was 7. I’ve used exercise to keep my body strong, and the more it hurt, the more I fought back with exercise. Lucky me – little did I know. Now that the medication is working well, my temporary absence from the gym and the hiking paths has ended. Don’t forget to exercise!

    I know I sound bossy, but AS is nothing to fool around with, as you know. I feel very strongly for Jon, because he’s really had it rougher than both of us combined. But listen to his passion – like me, he’s learned some hard lessons. I was almost crippled before my new treatments, and now most people see a tall, strong, athletic and *healthy* man when they look at me. I’m going to work hard to keep it that way.

    Bless you – I hope everything works out well!

    Steve

    Carrie

    (April 22, 2010 - 3:30 am)

    Hi Stephen,

    Thank you for taking the time to write such a detailed post about your condition. I’m still learning a lot about this disease. I haven’t had any major flare-ups since last March. My doctors have kept me on Salazine and in December, they told me that my x-rays were clear. The inflammation in my spine is gone.

    I’m not really sure what to think about all this. It’s like I was never sick. Like you, I’ve been really aggressive with an exercise and diet routine. I’ve always been regular with my exercise, and I’ve been a runner for years. The doctors told me last May that I shouldn’t run, but I don’t like taking no for an answer and I got back into it in September. Since then, I’ve also added yoga and pilates to my exercise routine for core strength.

    Have you ever heard of an AS sufferer whose symptoms have disappeared completely on Salazine? Although I still have low energy days, I don’t wake up in pain anymore. It’s the strangest thing.

    Anyway, I really appreciate you sharing your story. Reading what other AS sufferers are going through keeps me armed and motivated to stay on top of things.

    Stephen Chappell

    (April 22, 2010 - 4:09 pm)

    Wow … that’s a great outcome and I’m incredibly jealous. Shows you how variable the human condition is. You just may be one of those prime candidates for something like Salazine (which isn’t approved for use in the U.S., by the way). Your workouts also undoubtedly help.

    And it’s a good thing that you respond to something as ‘mild’ as Salazine – moving up the medicine chain gets progressively expensive. But, yes, I’ve heard of this type of remission on all sorts of meds. Some AS sufferers only need mild intervention, others like myself need the big guns. The fact that you still experience AS-associated fatigue shows that there’s still something to tackle, but having eliminated the inflammation portion of the equation is huge.

    Sounds like you’re on the right track, very aware, and very in tune with keeping your body in good shape. As you age, you’ll probably need to adjust treatment, but if you keep ahead of it and smack down things as they happen, you’ll do well.

    VERY good to hear such a great outcome. Really makes me hope for the best myself (and I am doing very well on Remicade now and back to the gym and hiking every day).

    Congrats!

    Steve

      Carrie

      (April 24, 2010 - 1:16 am)

      Hi Stephen,

      First of all, I’d like to thank you. Living in Taiwan and dealing with this disease has been rough. There are no support groups here. I don’t know anyone who suffers from AS. The only information I’ve been able to find has either been through my doctor or what I’ve found online. You’re the first person I’ve chatted with about this in depth, so thank you for taking the time to come back. Can you recommend any online sources that you’ve found helpful?

      My doctor monitors me closely. I see him every three months and at that time, he runs a battery of tests on me. I was originally taking two pills a day and he has dropped me down to one. I haven’t suffered any side effects from Salazine, and I keep a close eye out for anything weird. I tried looking for information on why it isn’t approved for use in the US, but I couldn’t find anything. Any thoughts?

      It also makes me happy to hear that remission is possible with AS. It keeps me motivated to continue watching what I eat, taking ‘me’ time, and exercising on a regular basis. I’ve certainly learned over this past year to listen to what my body is telling me. I wish I’d learned that lesson earlier on (and not the hard way).

      I’m really glad to hear that you are doing better and that you are back in the gym and hiking. That is great news. Best wishes for a beautiful and painfree summer.

    Gibs

    (May 28, 2010 - 10:22 am)

    The first ten years tend to suggest the severity of AS – if in the first years you dont suffer fusion of SI or other joints or other major symptoms you are less likely to ever experience them. The first ten years dictate how disabled you may become with AS.
    Ive got it as well and its not much fun – and totally unpredictable. And some foods seem to trigger it in me – and not hte starchie ones like some people might suggest.

      Carrie

      (May 31, 2010 - 2:16 pm)

      Gibs,

      Thank you very much for stopping by to comment. My symptoms seem under control now. I haven’t had any major flare-ups (knock on wood). With that said, I freely admit that I’m made some major changes to my diet and exercise routine. Perhaps this is why I’m doing okay for the time being.

    alex

    (July 18, 2010 - 1:48 am)

    Hello my name is alex, i am from Chile. i was diagnosed with AS since four years, then i begin a fight with this condition and the first i knew is that i will need to learn the most about it, because if you want to overcome something first you must to know it, i was googling for months looking for cures and theories about how this disase is produced , and i concludes that is produced for a imbalance in the inmune system, produced for stress, and because a malfunction of the digestive system, so i will strike on this.
    because of this i have taked l-glutamin, minerals, probiotics, omega 3, and every natural substance that help my gut and my inmune system and i had take out the stress of my life. surprisingly i had feeling better and i have let down the drugs (indometacin, prednison, etc.) and i have two months without any drugs, i tell you my history because i really believe that many people could be better only learning how the disase works.

    my best desires

    Paul Liu

    (October 31, 2011 - 10:16 am)

    Hey Carrie, good to know you are doing better. I was diagnosed with AS in 2006 and had several major flare ups ever since. Beside anti inflammatory pills & Sulfa Salazine, I recently started taking Traditional Chinese Medicine (TCM). They are of natural herbal content and do not have side effects. TCM treatment goes into the root causes of the condition and treatment is more long term approach. It is working well for me so far. You may want to check it out. All the best! Cheers!

      Carrie

      (November 8, 2011 - 4:39 am)

      Hi Paul,

      I’ve looked into TCM. In fact, my co-worker is an acupuncturist. He recommended someone here in Taiwan Do you know what kind of herbs you are taking?

    Michael smith

    (November 23, 2011 - 7:35 pm)

    Hi Carrie,

    I have had AS since I was 16 correctly diagnosed at 28 now I am 39. I have a severe case and fuse in SI and most of my vertebrae so my friends call me the hunchback lol. Anyway there are some great places to get information including spondyville.com and facebook has an AS group with very knowledgable members. I have been on almost every drug out there from Sulfsalazine (which is legal in the U.S. BTW) methotrexate, Enbrel etc. My regiment know is Enbrel 75MG’s a week Oxycodone twice daily unless I feel good then nothing. Methotrexate and sulfasalzine have both been less prescribed by rheumatologists the last few years as studies do not show a decrease in symptoms for most. Anyway check out those two places great sources for info. Have a great day!

      Carrie

      (November 25, 2011 - 2:09 am)

      Hi Michael,

      Thank you so much for sharing. I found the AS group on Facebook, but wasn’t aware of spondyville.com. Thanks for the tip!

      Sulfasalazine seems to be working well for me so far. This is the second time I’ve gone into remission on it in the past three and a half years, and I’m thankful that I haven’t had to increase my meds too much.

      Carrie Kellenberger

      (February 28, 2018 - 4:46 pm)

      Michael,

      You are greatly missed. I was updating this post today and you’ve been gone from our lives for over a year now. The AS community is still in mourning for you. Thank you for everything you did to shed light on this invisible illness. Many of us would not have the proper care or information we needed without your Spondyville site and Facebook group.

    justin

    (January 19, 2012 - 12:34 am)

    Hi Carrie.

    My name is Justin and I’m also living with Ankylosing Spondylitis. I’m currently building a blog on wordpress, the web address is antiinflammatorylife.wordpress.com. The site will contain recommendations on diet, exercise, lifestyle, etc. All information is free, and I hope some of the things I do on a daily basis will help you and anyone else living with this affliction. You will find pictures and descriptions of meals, exercise routines, yoga, and other helpful advice – and of course you can ask me any questions anytime. The site is currently under construction, but I did throw a couple pics and info on there. I will post daily meals and exercise routines so you and anyone else can follow me, if you like. Soon I will finish a quick Bio on the site so you can get know a little about me. Let me know if you like what I’m doing and if its helpful to you in anyway. Also, thank you for sharing your your story.

    alan mah

    (March 22, 2012 - 2:00 pm)

    hi carrie,
    my name is alan mah and i have AS.
    how are you coping with your AS? I hope that you are doing well. I was diagnosed with it when i was 20 in 1989. I know exactly what you are going through.
    The purpose of this mail to you is that i am looking for someone to help me to organise and write down what i know about this illness. The reason why i want to do this is that i believe that AS can be very well controlled and improved and hope to knock some senses to our local western medical practicioners that they are not the only way out. In fact, they believe that there is no way out of this illness, which i seriously dont think so. The worst thing is that, in Singapore, only western medicine care is heavily subsidised. And I believe this is also the same case in many western and europe countries. What I hope to do is to collect enough evidences that there are many effective ways to improve the arthritic conditions and hope that the main stream medical practicioners can improvised and blend them into their system.
    I hope that you want to be a part of this.
    thanks
    alan mah
    singapore
    email: aaremoval@hotmail.com
    tel: +6591004069

      Carrie Kellenberger

      (February 28, 2018 - 4:44 pm)

      I’m not sure what you are asking me for, Alan. I’m compiling information about Ankylosing Spondylitis here on my site. You’re more than welcome to use any of the information posted here. I’m very sorry to hear that you’re dealing with this too.

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