June 7, 2020

Pain and your Emotions with Ankylosing Spondylitis

Pain and your Emotions with Ankylosing Spondylitis

In this episode I discuss the pain that you may experience with having Ankylosing Spondylitis and how it can affect your emotions. 

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Transcript

Hello, welcome to this episode of The Ankylosing Spondylitis Podcast. I hope this show finds everybody doing fantastic. I want to thank those people that went over to spondypodcast.com and signed up for the newsletter, I really appreciate that it's great to see the numbers growing. And, you know, I look forward to communicating with everybody through the newsletter and hearing from you on the Contact link.

 

So, on today's show, one of the things that you know, I've really thought about lately is not so much that it's affecting me but that I've seen it talked about a lot online is the pain that comes along with ankylosing spondylitis and the damage that it can do to you emotionally. So I wanted to look at pain and your emotions today and I happen to find a really neat article on that titled Pain and your Emotions on ankylosingspondylitis.net if you have not gone out to Ankylosing spondylitis.com That, I encourage you to do that. It's a fantastic website filled with a lot of really, really good articles about Ankylosing Spondylitis and all the ramifications that it does and how it affects your life by not only the editorial team, but also by a number of writers with AS. So I encourage you to head over to ankylosingspondylitis.net.

 

 As we all know, Ankylosing Spondylitis is a chronic type of arthritis. It's also as you've heard, in the last few episodes, we refer to it as Axial Spindyloarthritis, which is kind of a little more inclusive term. It is characterized by pain in your hips, your spine, rib cage, neck, really anywhere, it can affect you. We're all affected differently. Mine started in my hips, my si joints, progressed to the actual hip socket damage, and then worked its way up at spine for me So it's been a unique journey on my end. But I know other people have had completely different experiences. And you know, that's the great thing about the community is you can learn from others to help understand what your body is going through. So anyway, it's caused by excess inflammation in the joints. We know that people with ankylosing spondylitis can experience limitations in their ability to move because of the pain and inflammation. One thing we hear over and over is get up and move, you’ve got to get up a movement. And I agree with that, there are some with ankylosing spondylitis like myself, who after multiple hip replacements moving is not as easy I walk with a cane, and in many spots, I use crutches only because I've been having a pretty serious issues with my hips lately. So we're all different. I encourage you to do as much exercise in any given day as you can, because that movement is really going to help to keep you in the long run, feeling better. And then lastly, over time, your spine can fuse. This is what's called bamboo spine. Its kind of where the name of the disease started. And you can see somebody with it very distinctly because they'll generally be hunched over. You know, it's not hard to pick out chronic pain and Ankylosing Spondylitis.

 

So, as Ankylosing Spondylitis progresses, you know, it progresses differently in everybody. Where I had a heavy attack in my sacroiliac joints and my hips when I was younger, others have it in their back, knees, ankles, wherever but one of the most common symptoms that accompanies the disease is the overall just chronic pain. Many AS patients are able to successfully manage their pain using over the counter medications and prescription pain medications. You know, the Nsaids, the heavy strength nsaids, the maloxicam, the Celebrex is whatever your body handles the best. I was on Celebrex for geez, I don't know 17-18 years, something like that worked really well for me. But I now have some kidney damage because I also took other stuff on top of it that I wasn't supposed to, to help. And well, I lost some kidney function, so that can be common for folks. Some people, however, experience what's called breakthrough pain that can feel intense and debilitating. For these people, the pain of a loss may further limit their activities. Experts recommend working with your medical team to develop strategies to manage pain, if you experience pain, even when you are taking pain medication. This may mean you have to tweak your pain medication; you may have to increase it by going and talking with your pain management specialist and seeing what options are available for you. The great thing is that today, there are so many options that did not exist. The best I could get when I was first diagnosed was Tylenol three. I'm not even sure if they even use Tylenol three anymore, but that was that was the epitome of medication you could get at the time. There were no any of these other pain meds So these along with a biologic to help control it, and you can have a fairly normal, I don't want to say pain free life, but you may be able to vastly reduce the pain by controlling the inflammation with a biologic.

 

Once you have this chronic pain, how does it tie into depression? Well, depression is a common symptom for people dealing with chronic illness, as well as with chronic pain. Pain is perceived as a danger and triggers our threat or, you know, fight or flight response. Our bodies are wired to flee threats. But pain is an internal signal. And we tend to experience heightened stress, anxiety and fear in the face of long standing pain, especially when we can't escape it. If it's that day in day out, constant throbbing pain, no matter what you do, you can't get rid of it. That doesn't take very long; few nights have little to no sleep and you can feel like you're at your wits end. So for anybody, there with the young kids at home. Many days I just I wasn't a good father, I was too snappy with them wasn't helpful to my kids. So, you know, I understand when somebody says, I'm at my wit's end; I've been there. The challenge is that in an effort to call attention to this threat, that is our pain, our body becomes more sensitive to the pain signals, the more anxiety and distress we feel, the more threat sensitive areas of our brains become activated, which in turn increases our sensation of pain. It's a dog chasing its tail. Basically, it's just, the more we try to escape it the more we see it, the more we go after it just it's a never ending battle. So feeling trapped with this continual pain, and limited activity can cause people to become anxious and depressed. And those feelings can amplify the sensation of pain and can cause you to do less to experience fewer positive moments to counteract the difficult ones that we encounter.

 

Depression and people living with Ankylosing Spondylitis to get a handle on how common depression is for people diagnosed with AS, researchers recently reviewed multiple studies. Their results showed that depression is common in as with mild depression occurring in 38% of people who were evaluated using a common tool to measure depression and 15%. Experiencing moderate depression. I don't know if those numbers aren't really actually higher, mild and moderate depression. In we're talking 48 53% of the people they ask, I'd really bet that that's maybe higher 60 70% the researchers also determined that people with greater levels of depression had more severe disease activity and more limitations on their ability to function. Well, that stands to reason if you're depressed, you're not sleeping. If you're not managing the inflammation, it's going to get out of hand and have a potential to do much more damage to a weakened body than one that's active strong eating well, so that's not an unusual thing is that you have much more ability to see the damage done.

 

So treating depression could help in a few ways, because depression is known to increase pain, so it may contribute to patients experiencing more severe disease and more physical limitations. So overall, make sure that you are treating everything for Ankylosing Spondylitis. Make sure that you are talking to your doctor about a good biologic that works for you. If you can find a good one and it helps that will really set you on the right path, proper pain medications if you desire to go that route. On top of that, you know, it could be anything as simple as nsaids to some homeopathic medications. I'm not averse to using homeopathic I know I talk a lot about biologics, but a combination of the two certainly can't hurt. The key is to make sure that you're talking with not only your general practitioner, but also any of your other doctors you have. So they're all in loop of what you think the best treatment plan will be for you.

 

And again, I thank everybody for listening. As I said before, the downloaded like 90 countries. Think about that 90 countries where people with ankylosing spondylitis around the world have listened to this same shows. We're really all tied together by this thing called ankylosing spondylitis. And well, it's not great. It does bring us all together. Please head on over to spondee podcast comm sign up for the newsletter. Drop me just a letter to say hello. And if you have any questions, don't hesitate to contact me at Jason at spondee podcast.com take care and I hope everybody has a wonderful week.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

References:

  1. Diagnosis of ankylosing spondylitis. Spondylitis Association of America. Available at https://www.spondylitis.org/Ankylosing-Spondylitis/Diagnosis. Accessed 1/28/19.
  2. Ankylosing spondylitis. Lab Tests Online, American Association for Clinical Chemistry. Available at https://labtestsonline.org/conditions/ankylosing-spondylitis. Accessed 1/28/19.
  3. Erythrocyte sedimentation rate (ESR). Lab Tests Online, American Association for Clinical Chemistry. Available at https://labtestsonline.org/tests/erythrocyte-sedimentation-rate-esr. Accessed 1/28/19.
  4. C-reactive protein (CRP). Lab Tests Online, American Association for Clinical Chemistry. Available at https://labtestsonline.org/tests/c-reactive-protein-crp. Accessed 1/28/19.
  5. Kim K, Cho C. Anemia of chronic disease in ankylosing spondylitis: improvement following anti-TNF therapy. Archives of Rheumatology. 2012 June;27(2):90-97. doi: 10.5606/tjr.2012.014. 
  6. Anemia of chronic disease. National Organization for Rare Disorders. Available at https://rarediseases.org/rare-diseases/anemia-of-chronic-disease/. Accessed 1/28/19.
  7. Lab test guide. Arthritis Foundation. Available at https://www.arthritis.org/living-with-arthritis/tools-resources/lab-test-guide/. Accessed 1/28/19.
  8. Pain and your Emotions. Ankylosingspondylitis.net. Available at https://ankylosingspondylitis.net/living/pain-depression/?via=recommend-reading

 

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