Trouble Sleeping With Ankylosing Spondylitis

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1. 

   CommunityMember6922237

   <p> Hi Nicky -<br/><br/><br/>My episodes of “fight or flight” definitely is impacted by multiple stressors that hit me in a short period of time. The level of stimulation can be overwhelming for my body and I can feel it everywhere. It seems that with an over acting immune system it could all be related in my opinion at this point. I know that your adrenals suffer when your in this state because of the up kick in cortisol and adrenaline. It definitely effects my sleep and painsomnia. I can be in meditative state in bed at night, feeling relaxed, no racing thoughts but my body just can’t step into the next stage to restorative sleep. I’ve pulled “all nighters” in this state. I use to have racing thoughts but for the most part, I’ve told myself “it’s time to sleep” as each thought tries to creep in, over and over again as each thought comes to my mind. I’ve been doing this for years and it’s finally paying off. After several hours tho, I eventually have to get out of bed just to move around because of the pain.<br/>Also I started trauma counseling recently since there are studies that show a link between autoimmune and past trauma. Unfortunately I do have an ugly list of traumas and I don’t want to get sicker. I know I’m not alone. Although I would prefer not to “dig up the past” and feel these emotions, I am starting feel “lighter”. <br/>I found a therapist that uses the EMDR technique that’s used for the military, police, first responders. It’s different then traditional talk therapy, there’s a methodology supported by science.<br/>So as far as “fight or flight” goes my therapist believes that I have triggers which are basically unknown at this point. I do know that a loud tv, women or children screaming, the news all trigger me. My husband has made an effort to keep his voice lower when we talk. He was screaming or anything, he can just sound intense to me sometimes. My body responds with this “fight or flight”, I feel the surge in my body and then all the pain. <br/><br/></p>

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2. 

   CommunityMember6922237

   <p>I’m struggling with painsomnia too. Lack of sleep really makes this so much worse. I recently learned about a recent study that concluded that you are 80% more likely to develop dementia using Big Pharma for sleep. So I’m trying to avoid them but I have for backup when nothing else works.<br/><br/><br/>Does anyone find themselves in a constant state of “fight or flight” mode when stressful issues come up? It’s hard for me to get out of it so I think this is part of my sleep problem. <br/><br/></p>

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   1. 

      Nicky-Flikas-aks Moderator

      <p>Hi @Standtall</p> <p>Oh wow I am sorry this happened to you. Painsomnia is real and I been struggling with it so I can relate when you mentioned "fight or flight". I would love for you to describe more of what you go through with this. Have you found anything that helps?</p> <p>Hugs !!<br> Nicky (Team Member)</p>

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3. 

   CommunityMember7faf90

   <p>I&#39;ve not been diagnosed with this , however after reading on all the symptoms I feel almost certain I could have it. I have been diagnosed with fibromyalgia and arthritis for many years. I&#39;m now 60. I HAVE to have trazodone and gabapentin to sleep. </p>

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   1. 

      Anne-Marie Raymond Moderator

      <p>Do you have a rheumatologist or primary care doctor you could ask about this? AS is so frequently mis-diagnosed or just missed completely, and often it's through patients self-educating that it's brought to light. <br><br><br>Diagnosis and treatment are extremely important in a progressive illness such as AS, so please do seek out some medical advice. And let us know the outcome, this is a very supportive community where you can come for encouragement, company and to ask questions. <br><br><br>Wishing you all the very best. <br><br><br>Anne-Marie (Patient Leader)</p>

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4. 

   jeb1743

   <p>I too have trouble sleeping. Ibfind some relief in cannabis use and gummies</p>

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5. 

   Don g

   <p>Thank you James.<br/>All suggestions and advice gratefully accepted </p>

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6. 

   James Hollens Moderator

   <p>Hey <inline-mention username="Don g" user-id="4170631"/> ,<br/><br/><br/>I guess it all comes down to what it is that is giving you sleep troubles. I was having issues with my sleep due to my fatigue levels and I found a few tricks that helped me a lot.<br/><br/><br/>Here is a link to some of them and I hope that this may be of some use to you!<br/><br/><br/>https://axialspondyloarthritis.net/living/sleep-improve<br/><br/><br/><br/><br/><br/>I hope you are able to find something that works for you soon!<br/><br/><br/>Wishing you all the best,<br/>James (Community Member)</p>

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7. 

   Don g

   <p>Struggling Nicky.<br/>Consistent lack of quality sleep over the last few weeks has me shattered today</p>

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   1. 

      Nicky-Flikas-aks Moderator

      <p>Don I feel you on this. I am sorry to hear you been having trouble with sleep over the last few weeks. I know how that can make your whole day be harder when you are not getting good sleep. How are you coping? I get often nights were not able to sleep from pain. I usually try to listen to some podcast hoping it will help me sleep. I sometimes will even take a warm shower to reduce the pain. I know sometimes we can try everything. Sending you hugs.</p> <p>Nicky (Team Member)</p>

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8. 

   nickyannajones

   <p>Ive been using melotonin. So far it&#39;s helping. I do have some big pharma pills on back up tho</p>

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   1. 

      Nicky-Flikas-aks Moderator

      <p>I have head many day melatonin helps. I am glad your seeing it help. I use to take some before bed. I have to be more consistent with it. Hope your doing well. How are you feeling today? </p> <p>Nicky (Team Member)</p>

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