Everyone with AS has this problem - it's probably the first thing that changes in our lives in a significant enough way that we realize we've got a real problem. I battled spinal pain for over 20 years before getting a diagnosis (yes, I went to a lot of docs, none of which even thought about AS), and had a terrible time sleeping for most of those years. What initially started to work for me were NSAIDs and some pain meds (Tramadol). When that stopped doing the job, I moved on the TNF inhibitors ... And now I mostly get a good night's sleep.

It's all about reducing the inflammation. If you can't fully do that, you learn to bring additional pillows to bed to prop up your arms or prevent you from turning over onto a sore hip or ribs.

But nothing beats treating the underlying inflammation. In the meantime, talk to your doc about some of the methods all of us have suggested about getting a comfortable night's sleep. Good luck!

I hear you. I generally take an over the counter sleep aid, pain medicine, go to bed with a heating pad and pillows either under my knees (if I'm on my back), or a bit of pillow wedged behind my back/hip if I'm on my side. This helps me get better sleep than I would otherwise, but there are lots of nights I long for a big comfy recliner.

I sleep with a firm, I mean FIRM mattress, with a 2 inch memory foam topper, and a feather bed on top of that. Its a good mix of support and cusioning. I end up on my front or side alot and it still wakes me up with hip pain several times a night but I can't find a better solution. Bought about 8 beds in past 10 years, tried them all. Benedryl is your freind.

My sleep number bed, zanaflex and a body pillow under my knees!  I can make the bed soft when I'm really sore or firm it up when I feel I want more support.  I had a soft sided water bed for 10 years before that and it was pretty good, but you can't beat the adjustability of the sleep number. And zanaflex really helps me get into a good deep sleep for the whole night.

I take blood pressure meds that make me a bit tired as it is.  But the combination of vicodin, valium and zanaflex makes me want to sleep if Im laying down.

I think Chapps is spot on. The key is controlling the inflammation. For years--before being diagnosed with AS--I could barely lie down flat because of the inflammation. Controlling it with meds is trial and error. I've taken Naproxen, Methotrexate, Enbrel... But nothing worked until I started taking Celebrex. (And no it's not banned in the US. That's Vioxx.) Celebrex has been a God send for me. Still experimenting with bed firmness, pillows, breathing techniques, etc to get a totally restful sleep, but controlling inflammation and pain has helped greatly.

Growin up with it i slept with a plywood under matteress, now i bought a memory foam mattress and it was a god sent, no pressure points, no more soreness and actually helps with pain allows for sleep,  i was misdiagnosed since i was 12 and at 40 now i cant walk and was never monitored, still have not seen a specialist cause i live in the remote bush...  I had so much inflamation i went and had xrays done and you could see the fusion, the inflamation and other things teh doctor wouldnt tell me about cause its up to my GP to decide the next corse of treatment...meantime im on celebrex whiched helps with inflamation but i hear been pulle doff shelves in USA si this true??? Thanks and good luck to everyone cause i hear the pain and frustration, i live it everyday too.....Thank God for these forums!!!

You're right.  Worrying plus physical discomfort make sleep difficult.  If you can't get your mind to stop spinning, you could try reading at bedtime, and read until you are sleepy.  Not a guarantee, but reading helps me to stop replaying things from my day that bother me.  If I turn out the light and start thinking too much about things that worry me, I turn the light back on and read another chapter.  Sometimes I have to turn the light back on twice.

I have completely stopped sleeping in our bed for the time being. I have AS and fibromyalgia so if I have a good day with one the other acts up. My Rheumy recently found disc disease and spinal stenosis and lumbar something or other..lol.

I now sleep on my couch but not alone. I took our feather matress for a queen bed and my memory foam topper and folded in half. It has helped alot with resting but I am not sure if any of us for any extended period sleep through the night on a regular basis. I know I haven't.

I am looking into a waveless water bed myself as I can imagine how amazing it must feels to have such subtle softness to fall into. Wishing you all the best on your quest for sleep.

I wish I had the magic answer.  My heating pad is my friend along with my temperpedic pillow.  But I now understand why people sleep in a recliner chair, some nights are simply beyond sleep.

I have yet to find any one thing that works. I have sleep apnea - both obstructive & central, but the machines, sleep pills, etc. Have not made any miracle changes to my sleep. I thik the heating pad, pillows, and my Tempur Pedic are the only reasons that ever sleep or rest for any length of time at all. I cannot sleep on a terribly hard surface w/o dealing with terribl lasting pain for days. Nor can I tolerate bed springs as pressure points. I would go to a furniture or bed shop and try a few to see what is more comfortable for you. Consider a topper -- 4 inches is what I last read was most recommended for chronic pain. Relax the Back is a shop I found in Chicago that had some ideas. You might try them. I am most comfortable with my Tempur Pedic and would not trade it for anything!! It is ofter the ONLY place I am comfortable.

Try changing your mattress. O good mattress ususally with some form of foam top helps get you thru the night. Today, I came home in extreme pain. I went and laid in my bed for about a half hour and it helped quite a bit. I know they can be expensive , but they are worth it. My doctor also prescribes Ambien and Ultracet for pain. When I take the required doses, I seldom have problems sleeping.

Not much to add, but a good fitting recliner can be a big help...most are way to big these days.  

I do want to respectfully comment on Jerrys position on a waterbed...I have been battling AS for 35+ years and I would say the reason my posture is as good as it is, is that I can lay on my back and do deep breathing to straighten my spine before I go to bed..I'm more or less fully fused but because of the waveless water bed I am able to keep myself in good posture...if I could not do this...and I can't in a hard bed, I am SURE I woudl have lost much more than the four inches of height that I have, when I roll over to my side to sleep I am free of the pressure points that cause such pain in the hips primarly, but also sides and shoulders,  etc.  Understand that during my first 25 years there was not the strong medications that are availiable today...I am absoluetly convinced a waveless waterbed is a great way to go if you have started to fuse into the lumber spine and up...it's a way to lay "flat" on your back and breath to straighten the posture, not to mention the significant relief from the pressue points...I'm sure most of us end up on our sides to sleep regardless...so as long as your spine is straight horizontally you'll be fine..and in a waveless waterbed it is...I would say even more so than a typical mattress bed.

Best wishes...oh, one other thing is be sure you do not have a sleep apnea type thing compounding the problem...if you snore loudly or wake up with a very dry month that is a sign you could have obstrutive sleep apnea...

First off, DON'T soften the bed with tempurpedic or similar mattresses and especially not with a water bed. They feel good for the night but aggravate the curvature issues inherent in having AS. I have lots of pillows but generally sleep on my side with only one under my head and the others keep my spine aligned.

I can completely empathize.  On top of the AS, I have been a "practicing" insomniac for over ten years now.  I have tried just about everything.  Right now, I am on a prescription called "Elavil."  In higher doses, it is used to treat fibromyalgia, so at a lower dose, it works well as a mild pain reliever AND sedative.  It has done wonders for my sleep schedule.  Also-- and I know it is a little bit of an investment-- but I would highly recommend getting a tempurpedic mattress.  If you cannot afford that, at the very least get a memory foam topper for your mattress (make sure it's thicker than 3").  Between my mattress and the mild sedative, I am able to get a full eight hours of sleep.  

I hope you find the rest you deserve!

I have a muscle relaxer and take it with painkillers, also through trial and error found the best pillows for me, I am very bent so can only lie on my side, on a specially bad night use other pillows to push in my back, between knees and between ankles and hug one that way I satay in a comfy position. But its all trial and error and what works one night might not work another. Good luck

Hello Mark,
I have had this problem. I always found that the more tense I am .... The more pain I'm in and the knock on effect is NO SLEEP! Relaxing helped me, find ways to stop your muscles tensing, maybe a bath, relaxation exercises and I also found a 'V' shaped pillow works for me. I did most of my 'thinking' at night worrying about the future, what was going to happen to me etc etc but I've come to realise that my over thinking AS was making me unhappy and that's not me. Yes I have AS, I don't know what I will be like in the next 10 or 20 years but nobody does so I am going to try to keep positive. I hope you find a way of relaxing to get a good nights sleep and stay positive. Take care.

A recliner and Ambien CR.  They had me on regular Ambien, but I would sleep for only a few hours.  That is when they put me on Control Release.  I don't take it all of the time, only after I have had a couple of sleepless nights.  Most of the time a muscle relaxer helps to take the edge off.  I am at the point that I cannot sleep on my right hip and cannot get comfortable in a bed.  It may sound funny and your doc may tell you it is bad for you, but I sleep the best in my recliner.

This has always been my number one problem as well!  These days I take a lyrica before I go to bed to relax the tension and then melatonin about thirty minutes before I go to bed.  It's the natural substance your body makes to help you go to sleep and you can find it in the vitamins section of any health food store.  My rheumatogist suggested taking 3 Mg per night but I find that one (the pills that I have are 1mg) does me just fine for now.  I hope this helps!!!

Hi Mark, I could tell you Valarian Root (actually it does help and is all natural) but I have such a difficult time with sleeping that I take Ambien.  I think it is somewhat controversial to some people and doctors but if I didn't sleep I wouldn't feel as good so that's what I do.  Maybe someday I can figure out the trick without it but for now I sleep.  It's generic now too so it doesn't cost a lot of money.  My doc say that without sleep for people who don't have AS it's terrible and we start with such a difficulty and deficit to begin with.  See if your Doctor has any other suggestions but even if you gave your self a break and tried it for a few days just to catch up??? Jenna