Living with Ankylosing Spondylitis can be difficult but I manage one day at a time!
Last post I talked about having been diagnosed with a pulmonary embolism, otherwise known as a blood clot in the lung. At first the docs felt that it was from my taking hormone replacement medication as that can cause blood clots. But something just wasn’t sitting right with me on this whole matter. I’ve had had enough medical problems that when someone tells me it was “caused from this…” something in me clicks on the analytic portion of my brain which then tells me “Um I don’t think so!” I started looking at past research on the subject of blood clots and the information I found made me wonder “How many people with Ankylosing Spondylitis (AS) KNOW they are at risk for blood clots?”
I studied what a blood clot is and the agents in our bodies responsible for keeping the blood from clotting. On Web MD I found that four agents or processes are responsible for the blood to clot. This is a narrowed down version so if you want to know more click on Web MD site. In order for our blood to be effective it has to run smoothly through our bodies for its entire life cycle but when you cut your finger, bruise your arm the brain sends these platelets in your blood to the site of injury and they begin to clot. Then a chemical is released in the blood which sends even more powerful clotting mechanism to the injury. At the same time another agent starts to work to keep the clots from growing and spreading and begins the neutralizing process. Eventually when the tissue has healed the blood clot breaks down and gets absorbed back into the body. Amazing what our bodies can do. But what if these processes don’t work? Then a clot can break off and travel through the body and end up in the heart, lungs or brain causing a considerable amount of damage.
How many times, if you even knew, did you think about how this process works? I know I don’t, even working in healthcare I never knew the implications of having a blood clot. So why is knowing information like this useful? Here are some statistics… Science Daily reported in 2011 that 100,000-180,000 Americans die as a result of a pulmonary embolism. On average, one person dies every 5 minutes due to a blood clot. Kind of makes you wonder?
Back in 2011 the Arthritis Foundation put out an article called “Arthritis Patients Face Increased Risk of Blood Clots” and I can honestly say I didn’t read much of it because it mainly discussed risks with patients in the hospital. There is a lot of research out there that covers RA and risk of blood clots but this article was the first to actually mention AS. If I had looked closer I would have read that persons with AS were 1.9 times more likely to get a blood clot compared to the general population. I know 1.9 times isn’t much in the whole scheme of things, but it is more than what an average person would encounter. The study and pretty much all the other studies having to do with RA, Lupus etc., all mention the propensity of patients with Autoimmune Diseases (AI) getting blood clots. The researchers are thinking that increased inflammation is the reason for increased risk.
Looking back on my recent experience it finally made sense. My blood clot wasn’t caused by my hormone medication or any of the other typical ways a blood clot forms. It was caused from my having AS period! I am 1.9 times more likely to get a blood clot over my sister who is healthy as a horse, but the difference between my sister and I is that my pain tolerance threshold is probably 50 times greater than hers. More on that later.
People with AS are at greater risk for blood clots one because we have an AI and two we hurt too damn much to do anything. We lead sedentary lives. Yes there are those that are “superstars” but not most of us. The other thing you have to think about is our chronic pain. I don’t know about you but mine goes everywhere I go, there are no days off! So put all this information together…. We have an AI disease, we don’t get out much and we are always in pain… yep I think pretty high on that risk scale!
So back to my pain tolerance threshold being greater than my sisters; People say you will “know” when you have a blood clot. Your leg will ache, hurt, have a burning feeling or if it’s in your lungs you will feel the pain in your chest and usually it’s’ gradual. I have to disagree. I didn’t know maybe because I’m in such constant pain that maybe I just thought “Damn it’s another flare”. NO I didn’t know because those of us, whether you believe it or not, have such high pain tolerance thresholds that if something’s wrong it better cause some serious and I mean serious pain. I’m talking pain that would make a 500 lb. gorilla cry; pain that would make the “Rock” Dwayne Johnson crawl into a fetal position, you know that pain don’t you?
So just to summarize this, I got sick and couldn’t go to work. I lay around the house because I can’t do anything without having major pain. I’m already at risk for a blood clot because I have an AI disease and now that I’m lying around my risk just moved up a few notches. Every day I’m in pain, wait tonight my shoulder hurts, wow now my side hurts when I lay down, oh it’s nothing just a little flare. Now I’m having problem breathing that’s a little different, I’m not sure if that is really painful enough but better get it checked out. Drive myself to the ER, “Yes I’m having problems breathing and my side kind of hurts”. “I have a what?” By the time the pain really hit me I had gotten myself to the hospital, I was lucky I should have been dead, end of story.
I’m writing this because so many of us with AI diseases and AS have plenty to deal with already and most of us have learned how to live with our pains that adding something new will be the proverbial straw that breaks the camel’s back. I don’t want to be a fear monger but had I known that this “blood clot” was possible because I had AS I wouldn’t have been so lackadaisical about my health. I wouldn’t have said “Yea I can get a blood clot lying around doing nothing, think I’m just going to lay here all day cause it just hurts too damn much to get up!” No I would have said “Get your ass up and move girlfriend that pain isn’t going to keep you from moving, not today!”
So what can we do? If you have AS or any other AI disease you need to be more proactive; you need to make sure your doctors know that YOU know you are at risk for blood clots. Insist on getting proper blood test that measure your bloods viscosity/thickness levels, and by no means let them shoo you off and tell you “Oh your blood is fine”. We all know doctors don’t know it all so having a simple D-dimer blood test done will help them and you decrease the blood clot risk. We need to make this one of the preventative protocols for our disease whether they think it’s applicable or not.
The other thing you have to do is MOVE. Believe me I don’t like exercise, it’s like a dirty word that should be spoken in back rooms. But we have to in order to keep our blood from settling and forming clots. No matter how much I hurt I get up and walk every hour for 5 minutes, you CAN find something that works for you.
Finally, not trying to scare everyone into the doctor’s office but you really don’t want to go through having a blood clot if you don’t have to. Making sure you get your blood tested and keep moving no matter what is going to prevent lifelong changes from occurring that haven’t already because of our AS. Blood clots are serious and I don’t want any of my friends or fellow ASers to be a statistic. Get it checked out!
A detemined Spondy out to raise awareness for Ankylosing Spondylitis!
Learning to deal with Ankylosing Spondylitis (AS).
Life with Ankylosing Spondylitis. Controlling through diet. London Marathon 2015!
I'm a journalist and author of 'Mostly Cloudy, With Some Bright Spells'. I live beside the seaside with some hideous illnesses (ulcerative colitis, ankylosing spondylitis, fibromyalgia, scoliosis and Crohn's disease) along with my French husband and our stupid cat. Despite being in pain 24/7 I'm a relatively cheerful, mentalistic sort.
Holistic Health & Whole Body Wellness
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The Official Blog of the International Foundation for Autoimmune Arthritis
walking to raise awareness of ankylosing spondylitis