Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Newer member saying hello

Howdy, new here.


My name is Jason, I live in MN. I work full time, have a family, a home, am an avid gardener, artist, reader, and cook. I am in my 40's and co-habitating with A.S., and... 'even though he can be a total Di** at times'... he's been with me since I was in my late teens. I guess my attitude, outlook on life, and worldview is a bit unusual; Perhaps what I find tolerable or manageable is a bit skewed as I've never had a remission period in my adult life; so I am not sure my story will be too helpful for those seeking relief and I am a terrible patient but, it is another story and I'd just like to say hi as I've been lurking here for quite some time. I just wanted to say I've enjoyed reading about everyones stories. Thanks for sharing.

As for me, when it comes to A.S. I'd like to think I've gotten by mainly on stubbornness and sarcasm. Actually I've had significant symptoms for so long that I honestly don't know how I've managed. A.S. is just there. It is what it is....Autoimmune diseases run in my family. I certainly wasn't surprised or dismayed by my diagnosis as over 20 years of symptoms, misdiagnosis, and therapies that didn't work passed before I was told. Actually I was relieved. My symptoms were bad enough I'd begun to think I was a super-freak.

The disease started affecting me in my in my late teens and early 20's with heel and foot pain. At the time I was very active and had a physically demanding job. I chucked the pain up to that or poor shoes and just took pain killers. In my mid twenties I started having extreme problems with my hip. At one point I couldn't get out of bed or walk but with extreme pain and difficulty. My docs thought it was due to work and exercise injury. No xray was taken. More pills. In my mid to late 20's the insidious low back and chest pain started. I used to pile blankets on my bed to sleep on and changed my mattress out 3 times trying to help it. My docs thought that I 'simply exercising and stretching wrong, and must have a simple heart murmur or pluresy. PT, eco, and pills. In my early 30's my mid back and upper spine and neck started getting painful. xrays, mri, PT. Docs said I had DDD and bone spurs, and herniated disks. Cortisone shots, and pills. Yea!!! seeing a theme yet? lol..... At this point I decided Pt's were a total waist of my time, and I needed to find find someone else to help. I should also mention here, that I also have significant scoliosis, sleep apnea, and blood pressure issues and psoriasis. So as I was saying, I found a chiropractor near me who also did acupuncture and massage. For the next 10 years I exclusively went to her to manage my pain. For the most part I was able to remain physically active albeit with no sustaining pain relief. For the first 8 years or so, the chiropractor was the only one who was able to give me temporary pain relief. As well, I must say, I love love love Acupuncture. For me, it works better than oxycontin for several hours. Too bad it's so expensive.

Now, starting a couple of years before I turned 40 my symptoms started getting progressively worse. Things got so bad that last year there were many points I had great difficulty walking and getting around. The neck pain at times is out of this world. More pills..and several bouts of severe depression..... at some point I started getting really worried. After several changes of doctors and more tests or anything exotic... it was discovered that many years ago I tested positive for HLA-B27 and yet for some reason wasn't informed, and no flags were raised. At this point I was referred to a rheumatologist. After 3 months of waiting for one to be available, I was diagnosed with A.S. What cinched the matter for me was the gene marker, family history, a very extensive history of my pain and symptoms that I typed up for the doc, I have every symptom except kidney problems, and very visible changes and fusing on xray. Whoopieee! right? Nope, I was actually relieved. Finally I had a reason, a name for all the pain and BS. It totally changed my frame of mind overnight. I felt like I had this huge burden lifted off me. Now all I have to do is channel my inner Quasimoto and life will be ok...lol.

So now I am taking once a week Enbrel, Indomethacin, Advil, Tylenol, and steroids as needed. I am of mixed mind about the drugs. Enbrel worked great the first 6 months. I still remember the morning after I took it. It was like I had the body of my 20 year old self back. All the inflammation, stiffness and pain had vanished. I was super excited. Although that has puttered out a bit. Now I have 40-75% improvement 3-5 days a week, for the most part the it knocks the inflammation and stiffness down enough I can get around just fine. It doesn't do much for the areas of my spine that are actively fusing or have pain from spurring or fibrosis. Frankly not much other than alcohol does, not that I am lounging around getting sloshed, but when I have flair ups I have been known to grab a glass of wine with a pill so I can sleep. No judgement, no guilt. I hate Indomethacin. It makes my ears ring and stomach hurt. I do follow a lower starch diet as if I have more than a cup's worth of starches I get GI related symptoms, but I hate it. I am an amature foodie and avid cook. It's torture to me. I think the most annoying symptoms are the eyes, skin, lungs and neck pain. My spouse also has an auto immune disease. I don't use a pillow to sleep, but I can't sleep on my back due to my sleep apnea and pain. I use a sleep number bed. I still think PT's are a total waste of time. You can find everything you need to know about posture and exercise online for free.

I think what has gotten me through it all the most over the years was sheer stubbornness, willpower, sarcasm, humor and changing my world view and outlook on life, beliefs, the world around me, etc. I like to joke and try and shock people and tell them things like, 'I am on the bacon and vodka diet' or how instead of potatoes for dinner I am cooking up gin and regret. Why can't we all just fuse together and get along? Or, when I am feeling especially bad, I'll say things like, 'no starch? well, you'll be prying that doughnut out of my cold dead hand when I suicide on french fries'.... or some such thing.

But seriously, If I was to give any advice for those seeking answers to their pain, it would this:

* Make sure you like your doctors and they mesh with your personality.
* Write out a list of your expectations and questions to give the doctor.
* Write out a detailed history of your symptoms and treatments for them
* Be at peace with having to educate medical staff and people in your life on an ongoing basis.
* Don't seek sympathy, or understanding, seek to be heard.
* Find an activity that brings you joy and don't let it go.
* Have compassion for yourself. Don't be too hard on yourself.
* Accept what you CAN do now, and let go of what you CANT do today.
* What others think, judge, or feel isn't any of your business. It's about them, not you. Let it go and don't worry.
* You are your biggest advocate. Don't give your power away.
* Your pain and your experience is just as valid as anyone elses.
* This suffering is not who you are. It may be a part of you, but it doesn't define you.

Well, that's it. Like I said. Thanks for your stories and thanks for listening.

Hi Jason, I like your perspective. I'm newly diagnosed in my 40's. Looking back, I think AS has been with me for a long time too but I just made excuses for the pain.
I haven't decided if this site is doing more harm or good for me. I have been getting a little freaked out by some of the stories. AS already scares the crap outta me, and then I read about people that are much further along and I worry about my future.

Must be the age of the excitement 40s. Nice to meet you.

Hello, nice to meet you

A lot of what you say rings true for me as well

For me, the GI stuff actually goes back to childhood, now that I know what I know. That hit full out when I was 30. I was lucky not to have to deal with the joint stuff full out til age 35. Wonder if all those years of ibuprofen a few days each month for migraines was actually helping keep joint stuff at bay. But then when the gastritis hit at 30, the ibuprofen stopped. Then maybe when I was say about 40, the other symptoms starting piling on.

For me, I was lucky to have a really good manual PT very early on. Like your chiro, my first then second PT kept putting me back together. But I've also experienced the kinds of PTs that you must have experienced and those were less than useful, sometimes even harmful. Now I have a chiro a lot like my first manual PTs were and he's great. But too, went to a number of not as good chiros who I wouldn't allow to touch me cause they kept wanting to do those thrusting adjustments and I said "NO WAY!" But the gentle stuff is great.

A few years back, my neck took a turn for the worst. It had been a big issue since I was 35, but it got worse.I found an interventionalist who did a few cortisone injections in my cervical facet joints. That and only sleeping in my recliner have helped my neck a lot. I can't sit in most chairs, but can sit on flat chairs (no sloping in or back, nothing too "sinky") and car seats are such a nightmare that I still drive my 1995 saturn with over 240K miles. But the interventionalist has been great as has been my recliner. I also have this contraption that helps when it flares big time; i think it must put my neck in neutral and relieve the nerve compression. Its cheap but really does help. Ultrasound when things are bad. Ice comes into play often. Here's the contraption and I just lay on it for a little while:

http://www.amazon.com/Real-Ease-Neck-and-Shoulder-Relaxer/dp/B000BMI4SW

I started Humira in June 2013 and have been lucky that it has stayed a game changer for me. It worked so well right away. A year and a half later, the highs aren't so high now, but the lows are as low either. rather it seems to have evened me out. I was taking it the typical every 14 days, now taking it every 10 days and that seems to help even more. Decided on the Humira due to it being a human derived antibody instead of mouse, so I thought the potential reactions to it were less likely; my rheumy agreed with my hypothesis, so we went for it.

it may not have taken me as long as you for a dx. Here it was 12 years and 5 rheumies. Finally I flew to another city in another state for a dx and paid my own money, but it was so worth it. with the dx and that piece of paper, was finally able to get into the good practice I'm in now. But it took my aunt 50 years and being practically unable to walk (using a walker by then) before she got her dx and immediately put on remicade. it has helped her, but after 50 years, even more damage done.

Like you said, the biologics can help with the inflammation, but won't fix the damage done. Thus the bone spurs in my neck and the "arthritis" in my SI are here to stay, but the Humira still helps a lot.

Anyway, nice to meet you.

Hello Jason,

Welcome to Kickas, long story, but not unlike many here. Hope you can have more good days than bad and you find something that works for your pain relief now that you know it is AS behind it.

Keep on kicking!

Tim