Sleep advice is like cold remedies, everybody has one, but what works for you is the only thing that matters. Don't worry, I'm not here to tell you that the cure to AS painsomnia is hiding from you on a far flung mountaintop, the result of finally doing "one weird thing" right you've been doing wrong all along, or yours for just $19.99. There's no one cure for AS painsomnia, but there might be some ways to feel better.
Sleep and rest with any chronic illness can feel like a catch-22. Most of the discussion around sleep is geared toward preventing illness, but what about if you're already sick? There is no sick cliff. Our needs for sleep and rest don't evaporate just because we're sick. In fact, it just intensifies, often without the reward of waking up refreshed. This is what makes painsomnia such a serious matter.
Do your painsomnia homework
Try to get a general sense of how much sleep you're getting with journaling or a fitness tracking app. If this isn't doable it might be worth asking your doctor about a sleep study.
Consult your pharmacist about how treatments might impact your sleep. A pharmacist might be able to work on a new schedule or new approaches to treatment. Either way, don't miss out on the valuable insights only a pharmacist can provide into how medications can make patients feel.
Check with respected organizations working in rheumatology. They work with researchers to get the most current information out to patients and clinicians. Here is what The SAA has to say about PainSomnia.
Living with AS is not the same as not having it. It may take time to find the best way for you to get adequate rest. Cultivating an open flexible mindset can help you discover what works for you. Notice I didn’t urge you to stay positive. Just try to be constructive in your actions around sleep and rest. You deserve to be well cared for, even though you're already sick.
Speak honestly with your health care providers about any sleep issues you have. Don't just accept that you'll sleep poorly for the rest of your life. Don't tough it out to avoid looking weak. Painsomnia can dramatically reduce your quality of life, this is not a time to go it alone.
Do you use the word disability to describe your AS?