I suffer from a condition called Ankylosing Spondylitis. It's not the end of the world - there are far worse things out their and I'm not fishing for sympathy.
I thought my blog might be a good place to document that aspect of my life. I sometimes blog about work, sport whatever, and AnkSpon or AS as it's known to it's "friends" is something that might actually add some value to the "noise" that is the blogosphere.
So if you've found this, chances are it's because you were looking for it(or at least AnkSpon stuff right?). Leave a comment...let's discuss it.
As common as the literature say it is, I have only met one other person who suffers - and suffers far worse than I do.
My symptoms started when I was about 11. Soreness in the thighs back then. I had a brief period of swollen ankles (well ankle actually) then pain progressed to my hips (by aged 14). Then it was actually diagnosed as AS at about 19. By then I started taking Brufen and still am! (19 years later.) In my 20s the pain an stiffness progressed on up the back (spine) and now it's mainly my neck the suffers.
I've recently had some x-rays as part of a consultation with a rheumatologist which confirmed the complete calcification of many of my vertibrae. The back doesn't hurt that much anymore but the neck still has it's moments.
My condition is far better it would seem than many that suffer from AS. I've heard of people who end up in wheel chairs! I turn 38 this month, still play a bit of social "Indoor Cricket", played proper cricket until about 4 years ago, enjoy my family life, gardening etc, so as I said, this isn't a plea for sympathy or any such thing, it's just a blog post, about something about me, that others may relate to and can discuss if they feel so inclined.
I am no expert and have no medical training at all. This is just talk, anecdotes and opinions from experience.
I've seen doctors, physiotherapists, chiropractors, had deep tissue massage - nothing really fixes it. The massages help for a little while, maybe a day, but as doctors keep saying, it comes down to management.
To be honest, swimming and stretching help just as much.
I am a terrible swimmer - terrible! - but it does help. It's hard to motivate yourself to get to the pool especially now it's winter in Victoria. Thank goodness for me, winter here means lows of around 10 degrees (celcius), it must be far worse to live in a truly cold part of the world.
Anyway, swimming and stretching definitely help - warmer dry weather is better .
A recent visit to a rheumatologist tells me I don't qualify for any of the new drugs on offer, which apparently are a minor injection that can help slow the progression of the disease. If you're 20 and have AS - follow this up! I firmly believe that the very limited success I had in local cricket (very limited) would've been less limited, had my flexibility and mobility not been so constrained. (Read, I was a crap fielder which gave selectors a reason to drop me first!)
Anyway, if you have AS, let me know how you deal with it. If you have any ideas that are better than mine - let me know. Mine aren't earth shattering - just stretch and swim!
Hi, I also have AS and I was diagnosed around age 18. Luckily, it's been mostly mild for me. I have morning soreness most mornings. Rarely, and unexpectedly, I go into a "remission" of sorts, where I seem to have no, or dramatically less symptoms. I'm now in my late 20's and my main area of soreness, stiffness, and pain is along my vertebrae between my shoulder blades. When I was a teenager, the pain and stiffness started in my S.I. joints and lower back and slowly over the years has worked upwards to my spine. Two year ago I was able to a self injectable drug called Enbrel. I was only able to afford it for about 7 months. During those 7 months though, I forgot all about my A.S. My symptoms completely went away. I thought I was cured. I even forgot what it was like to be in pain... it simply was not a part of my life anymore. I was even questioning whether I really had A.S. However, after I stopped taking Enbrel, the pain was back in full force in a couple months. Today, the pain is between my shoulder blades and is, I assume, going to creep into my neck next. I am afraid of this part. I've never met anyone with A.S. or even talked about my own condition before. Although, from what I've read, my symptoms appear to be pretty "classic." Anyway, I just felt the urge to post a comment of my experience. Also, as much as A.S. sucks, I don't think it has interfered with the overall quality of my life so far. I do worry about what it's going to be like when it's in my neck. Guess I'll cross that bridge when I get there. Hopefully, I will one day be able to try Enbrel again. As much as I hate to admit it, exercise and stretching really does help. Although, nothing was as good as Enbrel. Anyway, that's my A.S. story.
ReplyDeleteThanks for the comment. I can't believe someone stumbled across this so quickly.
ReplyDeleteIt's amazing the drugs worked so well. When I say I don't qualify for the drugs...(can't remember the name but will look it up) I mean qualify for a prescription in order to receive them at the subsidised rate. Apparently they cost the government (in Australia) about $24,000 per person so you have to qualify for the prescription, which involves still being in really bad pain and your life style being effected, after taking 3 anti-inflamatory pills per day AND swimming and doing the recommended stretches. Once I do all that, I feel pretty good so I won't get the drugs - not yet anyway.
Don't be too worried about the neck - the pain isn't any worse than what you've most likely already had, it's more the inconvenience of a stiff neck. You fell a bit silly as you turn to face people to talk, and they say, "oh, you've got a stiff neck what happened..." and you have to go through the whole thing, or say "ah nothin'", but then every time you see them, they say, "oh, neck still stiff...what have you done"...anyway, as I say, there are worse things out there.
Thanks for the response.
Hi, my name is Sandy and I am 55 yrs old. I also have AS and I was just diagnosed with it less than two years ago. I had been to so many doctors, chiropractors, and even to an acupuncturist. I don't have the gene but I have a severe case of AS. My entire spine is fused and I cannot move my head up or down or from side to side. It was recommended that I get on remicade but I am afraid of the side affects. I have a high ana and fear that the immune blockers might trigger lupas? I currently use a cane; but I am looking into an electric wheel chair.
ReplyDeleteWow! Thanks for commenting Sandy. That really sounds severe and I sympathise.
ReplyDeleteYou've certainly given me a bit of a kick up the backside with your story. I haven't been swimming for about 2 months which is very slack and I will - this week!
I hope you find something that helps with your quality of life in someway.
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