It’s been a while since I’ve posted on here, originally DXed with AS in 2011 and symptoms since about 2007. Married for 13 years this year and three kiddos, 8, 6, and 2. I’m 35.
I responded to TNFs well and was taking pain meds in order to reach a near-pain free state until I was diagnosed with meloanina in 2015. Since then, my only option has been high dose NSAIDS, Rituxan, prednisone, injections, and opioids (just to keep the pain between a 5-8). I’m tired of the opioids, but my thoracic pain is dang near unlivable sometimes. I have bone spurs and fusion around T12 (imaging 3 years ago, I’m sure it’s worse now) and I’m looking for advice. Im hopeful that the next gen biologics that target a different inflammatory pathway won’t carry the malignancy risk, but I’m still probably a couple years out from being able to try those (if they’re even on the market).
Sleep is terrible beyond about 4-5 hours in bed and I now cannot sleep without either pain meds or a sleeping pill (have used ambien and Xanax in the past and currently take Belsomra from time to time). We have a sleep number bed and I have it set to very soft, because any firmness at all destroys my back. Hotels are hell.
Has anyone tried the Purple mattress?
What do you take if TNFs are off the table?
What do you do about sleep?
I tried CBD oil, but it didn’t seem to help much. I hate taking prednisone because of the rapid weight gain. I’m fighting to get into and stay in shape, having lost 30+ lbs in the last year or so and within 15-20 of my goal. It’s like I have to choose between pain and health. I’m just tired of it and looking for advice and encouragement. Thanks in advance to all of you.