Ankylosing spondylitis

A Walk down “Blood Clot” lane

bloodclotLast 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?

Now that you have been somewhat educated on blood clots, I’ll explain why this is a concern for those of us with AS. 

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!

17 replies »

  1. OH! MY! GOSH!!!! This explains A LOT! My PE was never explained, they just kept telling me that they weren’t convinced that it was my HRT (from my hysterectomy in 2000) but then they could never give me a straight answer. They’ve tested my bloods viscosity but, like all things with my body, sometimes it is all right and sometimes it is just borderline. The other alarming thing that has happened to me is that they will take my blood in the ER or at a lab and by the time they get it to the lab or the tech it has clotted and they have to try again. This has only happened a couple of times, but seeing as I almost died from my PE I think it is one too many! I can’t tell you how many times I’ve rushed to the ER “just in case” since my PE in 2009 because now I never know. Better to be paranoid than dead my hubby always says.

    It was sad, back when it actually happened they drug me to the ER kicking and screaming that it was nothing but a little bronchitis. My leg had been sore all week but I chalked it up to the fact that I’m always sore. Holy moly Joyce reading this was fantastic! This has inspired me to not give the issue up with my doctors especially now that the AS has been officially diagnosed. I have even more ammo in my pouch of reasons why they can’t just “let this one go!”

    Hang in there my friend, I admire your strength and courage. Keep writing about this stuff, you’ll probably never know whose life you save in the process. 🙂

    • I know hu? I just could’t live with the fact that there were no “real” answers so I have to go digging! At least the info will help you and make your docs more aware especially since you had one before. If my blood clotted like yours had on those occasions I wouldn’t have thought anything about it either… We just have to keep ourselves healthy.

      • That is exactly what I do, a massive amount of online research while I am no longer able to work. We rock!!!! : )

      • I do. I use PubMed and a lot of the other journals that comprise world collaborations. What do you use? I think I’m going to tackle Humira on a post after 10 years of use the research is now coming out on it’s pros and cons.

      • I don’t have any particular place I go to research. I just dig as far as I can get to. I will indeed try the ones you mentioned. Thanks for the great tips for computer research!

  2. That is AS I am afraid to say is it. whether it AS or one of the other autoimmune deceases, you are at risk of a blood clot.
    I did run a NASS group here in England for 18 years , if were to tell all what AS can do you. You all be running for the prozac. My thought on it all is, to and Smile keep moving when you can, But always look on the bright side. I am really bad with it and hoping to get Anti TNF as a Christmas present. My Late Dad died early as result of AS and being give Radiotherapy in the late 1940’s right through to the 1970’s. He died in the 1989 aged 68 having surived the Burma and the Jungle. I say to you all don’t go worrying about what might happen.But live with a smile and feel the sun, because life is for living and your best to enjoy it! Iam also badly dyslexic with a lot of problem from Being born 9 weeks early and then contracting meningitis at 11wks old. if say poor me, the world doesn’t want to know. my thing is to smile. I do know how hard it is to smile when your full of pain. Do try it because laughter is on the best medicine. even if it makes your ribs hurt.

    • Thank you for sharing your story Anthony. It’s nice to know other “get” it! I agree that we need to just live our lives and quit worrying about the what ifs luckily I can see further out and future looks bright…

  3. Hiya guys,I am being treated for a clot in my leg at the minute and have just had a scan that showed the clot has gone and there is no signs of any damage at all but my leg is still ridiculously swollen and painful and they don’t seem to be able to give me any explanation for it,so frustrating,am I destined to have a fat leg forever,dony no what to do. Any advice would be much appreciated xxxx

  4. I have had arthritis in my neck for 17 years. Lots of terrible pain but I deal with it. In 2014 I have double PEs and they found a blood clot in my left leg. They ran all the tests and were never able to figure out what caused it.

    Since then I have had progressive pain in my left shoulder, my left rib cage, my back, both hips and the bottom of my feet hurt at times. Lots of pain all over. They have just diagnosed me with a AS. Now everything makes sense!

    • Sorry so slow to respond to you David, life just seems to pass me by lately. I’m sorry you are going through all this, but I know exactly how you feel, been there done that :0) At least you know what the cause is. First thing I can tell you to do is start muscle testing your food as this will make a big impact on your overall well being. The other thing I found is take some good mineral supplements. I have been taking just the Youngevity supplement packs (actual pills), and selenium, which you can get on Amazon. Finally if they are putting you on lots of pain killers and other meds, and they don’t seem to work, look into getting some Kratom for pain relief. It is natural and not addicting. Please let me know if I can help you out. Joyce

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