Spondylitis Association of America
Does anyone find a particular way of sleeping that helps with pain and stiffness?
Since my symptoms started I have changed beds several times.I now have a memory foam topped matress with a sturdy divan base.I use two pillows but I also have a V-Shaped pillow I need to use.I struggle to get a comfortable nights sleep as I know many of us do.I always wake up in the early hours very sore and especially around my mid back and inbetween shoulder blades and also my lower back across my lower back and bottom.I also have pain on outer side of thighs and sometimes numbness.Ive tried sleeping with a pillow inbetween my legs and also tried less pillows & More pillows.When it comes to the second half of the night the only relief I get is if I get up and stretch,after shuffling like an old lady to the toilet.And then propping my pillows up to almost sleep in an upright/sitting position.Then take more pain relief.I seem to get a little relief from this position.
Does anyone else find this or find another way more comfortable?
Any tips?

Thanks
Lotus, I can't speak for everyone but I have struggled for several years trying to sleep. Memory foam pillow helped for a while then it too ceased to help. Sleeping pills (restoril) and muscle relaxers (tizanidine) have been my best help. I still wake very stiff and struggle to get out of bed but do sleep.
Posted By: cemc Re: Sleeping positions or tips for more comfort - 09/22/13 09:47 PM
I just know that unless I am on a short steroid course (the only real treatment option I have right now) there is no way I can survive a full 8 hours straight in bed. I deliberately have something to drink fairly close to the time I go to bed, to force a middle-of-the-night bathroom trip, because that helps me move around just enough that I can get back to sleep comfortably enough to get the sleep I need. I've long since given up on staying in bed the whole night.

As far as pillows go - like you I have a range of different ones, and use them whereever necessary. I usually only have a very thin pillow (a small squishy microbead filled one) under my neck, but if side sleeping will have one between my legs and another thick one to rest my upper arm on (to keep my upper back and shoulder in a good position).
The only thing that helps with pain and stiffness for me is getting up during the night. I generally get up twice, sometimes three times, stagger to the bathroom, then get back in bed. The bathroom trip loosens me up just enough to get back to sleep.

I can't sleep on my right side because of enthesitis pain in my right elbow and wrist, so I alternate between sleeping on my left side and on my back. I start on my left side with a standard bed pillow between my legs. When I roll to my back I fold the pillow and put under my knees.

Sometimes in the wee hours of the morning I can't get back to sleep no matter what I do. When that happens I head for the recliner. Sometimes I can fall back asleep right away in the recliner; other times I read my Kindle or play solitaire on my tablet until exhaustion takes over.
It's crazy how sleeping is so hard for us! Homemade ice packs help me numb the aching and stiffness. If I can sleep two hours between retrieving new ice packs I consider it a good night. When it's only one or one and a half between trips to the freezer, I start feeling pretty disappointed. I started using a very thin blanket for my pillow four years ago. That helped and any real height will trigger nerve spasms.
At one time, I was taking 4 muscle relaxers, a lunesta, about 6 or more antihistamine, and 2-4 Ty Pms for any real sleep, but I have backed off on the Tylenol and antihistamines when I can. I started taking magnesium malate recently, which I was told is a good natl muscle relaxer, and several forms of melatonin. Who knows?! *lol*
Well, to be honest, my sleep arrangements are almost irrelevant but sleep hygiene is extremely important as is timing my medication. For example, I frequently fall asleep in the floor and sleep there all night, without a pillow. Now, my floor has a thick pad and thick carpet, but I've slept in the living room floor, office floor, bedroom floor, etc. Also, I've been on campouts where I slept on a 2" air mattress. None of this seems to matter much despite my fused and messed up neck, hip replacement, etc.

What does matter for me is good sleep hygiene and taking medicine carefully. I am careful to turn off the lights at least an hour before bed, so my natural melatonin starts working. I also stretch for about 2 hours right before bed, which is why I often fall asleep in the floor - because I had been stretching. I use a small space heater while I stretch because it relaxes my back muscles. No caffeine after 3 PM in the daytime, no sugar at night, no exercise within 2 hours of bed, etc. No loud TV or noise or music. I do use a fan for white noise.

As for medicine, I punted sleeping pills 2 years ago, after being on Ambien for 10 years then Restoril for 10 years. I could tell it wasn't working anymore, and although it took me 4 months to taper off, I slept much better without the pills and still do 2 years later.

I do take muscle relaxers and pain pills, along with 2 antidepressants that have sedative properties, before I sleep. I synchronize all the pills to hit the peak blood plasma levels concurrrently, and timed to end with the 2 hours of stretching. No, this isn't always the perfect recipe, but I do pretty well considering how messed up my neck is and the fused state of my spine.
Do you take the amitriptyline regularly? It has been the only thing that has worked wonders for my sleep. Before starting it, I could not sleep on my back for six months. Of course, when I'm in a flare like now, I might need tramadol in addition to my nightly amitriptyline - acetaminophen - muscle relaxer combo to get a decent night, but all in all I'm very pleased with it. Getting better sleep has made waking up easier in the morning, quite the opposite of what some people experience with the tricyclics.

(my current dose is 30 mg, FWIW)
I haven't slept on my back in years. I have to sleep on my side. I also have a large bone spur (endthesis) {spelling}, on my right AC joint which causes considerable pain after sleeping on my right side. I take Cymbalta, Restoril, and Tizanidine before bedtime. Dark room would be nice but my wife can't sleep without the tv on. Honestly, if I turn it off she wakes up. I am sleeping a bit better since I got my cpap.
I usually sleep on my back, with a soft pillow behind my knees. Then a sort of 'frog-legged' leg position. It seems to relax my SI and hips. And usually get up once during night, but usually go back to sleep afterwards. Maybe 3 hrs sleep on either side of the bathroom trip. And I have a Tempurpedic mattress. Good luck. Hope you get some good tips.
Originally Posted By: Poppa_John
I haven't slept on my back in years. I have to sleep on my side. I also have a large bone spur (endthesis) {spelling}, on my right AC joint which causes considerable pain after sleeping on my right side. I take Cymbalta, Restoril, and Tizanidine before bedtime. Dark room would be nice but my wife can't sleep without the tv on. Honestly, if I turn it off she wakes up. I am sleeping a bit better since I got my cpap.


Your life of sleeping with the TV on sounds like the definition of hell to me.

If you need all those strong medications (with harmful long term side effects) to sleep through the spondylitis, that is one thing, but if you are taking some of them to sleep through the TV, that is quite another. I would really speak with your wife about it if I were you. It sounds really selfish on her part to expect you to risk your health with meds just so she can sleep better. And even if it doesn't harm your health but just bothers you it sounds selfish on her part. Can't she just wear earphones to bed if she must have noise?
I'm getting pretty intolerant of noise when I try to sleep, so I started wearing soft earplugs. My hubby snores and earplugs are preferable to repeatedly elbowing him to turn over. smile Another problem with a TV is the flickering picture...also keeps you from relaxing. Sorry you are being pushed into having the TV on all night. Maybe earplugs and a sleep mask could help if you are forced to put up with it, though seekonk points out she could wear headphones for the noise factor. Good luck.
Ugh. I'm having one of those sleepless nights, so I figured I would catch up on this thread. I have to have something between my knees when sleeping on my side and I really can't sleep in any other position for long. I also cannot sleep with lights on. My fiancÚ and I had an agreement when we got a place together that we wouldn't have a tv in the bedroom. When I saw the sleep specialists about my bouts of hypersomnolence mixed with bits of insomnia both said it was important to maintain important bedroom hygiene (most of what Jeffn said) along with also maintaining the bedroom for only sleeping and sex; no eating, paying bills, reading, watching tv, etc.
Ha, alot of people talking about their partners and noise from TV snoring, etc. My fiancee and I actually have seperate bedrooms for that reason. I sleep really weird though, so its kind of a necessity. I have to have the TV on and I sleep with a fan pretty much right in my face. I like the breeze and the white noise that comes from it. I also sleep upside down (head where the feet should be) and diagonally on my queen size bed stretching out and taking up the whole thing. I sleep on my stomach usually. I can't really fall asleep lying on my back and sleeping on my side really hurts after a while.

We share a bed every once in a while, but for the msot part, we're each much more comfortable sleeping in our own bed. This way she gets her soft mattress and I get my firm one. And she doesn't have to put up with all my weird sleeping habits.
I so miss the days I could snuggle in and get nice and comfy and sleepy. =(

Sleeping position is so important, and unfortunately there is no position has been comfortable for me in 5 years, no matter what I do with mattresses and pillows. Whatever is milder on my back hurts my shoulders and neck more and vice versa. I probably don't have much active inflammation now but still get pain from pretty much any position, probably because of prior damage. The best way I can describe it is that every position starts feeling at some point like when you pull a finger backward with your other hand and keep it pulled back like that for a while. You may not have inflammation in your finger but it will become sore very quickly.

Because of this, I have to change position every 10 minutes while waiting to fall asleep, which plays havoc with sleep latency, wakes me up hundreds of times during the night, and wakes me early unable to lie down any more.

In five years I have had only 2 good nights' sleep, namely when I went to Mexico on vacation and bought and took a sufficient dose of Xanax, something that would not be prescribed to me here. It was heaven. I woke up and felt like a hundred bucks during the day too.
Originally Posted By: autisto
Sleeping position is very important in getting relief from hip and spinal problems. But it's only a part of the overall puzzle. A book called "Eliminating Pain: Your Guide to a Better Lifestyle" explains the whole mystery. It can be found on Amazon.


thanks for the advertisement. now go away.
hey seekonk, since you can't take the xanex, do you take any drugs now before going to bed? I know a few people have mentioned the tramadol before bed, that helps me a little bit too.
when I need a bit of extra help on top of lunista, I take tizanidine...

Mike, careful with tramadol, personally, its bad stuff.
Originally Posted By: Roqufort
when I need a bit of extra help on top of lunista,
Mike, careful with tramadol, personally, its bad stuff.


Hey Roquefort, can you elaborate on that at all? Right now I'm only taking it maybe once every 2 or 3 days. It helps with pain considerably and I haven't noticed any side effects at all.
Mike, personally, i found it to have very high dependent tendencies. after just taking it each morning for 3 days, I was waking up on day 4 with a withdrawal headache. day 5 and day 6 same thing.

just my experience.
Most people have very mild withdrawl if any from tramadol though. No way to tell how sensitive you are until you try for yourself. I've seen some people taking it every day for 30+ years without the need to increase dosage. Very rare I'd imagine, but reactions seem to vary. I'm actually considering it for myself lately.
I've always read that firm mattresses are best for SpA, and that's true for me. We got a nice 3" memory foam mattress topper, and it made me hurt even worse. I have to sleep on my stomach (thin pillow) so my thoracic spine stretches a certain way. My back gets extra stiff and spazzes otherwise. I also can't sleep through the night because of pain. :-(
Dark, umm, i know of quite a few people that have had bad withdrawal from it with just a few days taking it.
I've just had a 2 week course of Tramadol and for it's benefit I might as well just taken M&Ms. No benefit whatsoever.

Back to the drawing board
I've taken tramadol post hysterectomy 5 years ago and had some relief, but after talking it every night for the past month, I've not felt any relief. I am somewhat disappointed as I am hesitant to begin narcotics 1. because of possible dependency and 2. I have teenagers who bring friends over daily and don't want a temptation. I did not experience withdrawal the last time I took tramadol and I was taking it much more frequently than just at night.
Originally Posted By: an0thermike
hey seekonk, since you can't take the xanex, do you take any drugs now before going to bed? I know a few people have mentioned the tramadol before bed, that helps me a little bit too.


Tramadol is stimulating to me so it keeps me awake frown

I am actually trying to get off Tramadol (again - I was off it for almost a year before starting it up again) and I cannot. Even though I only take 2 pills of 50 mg a day, I get horrible withdrawal when I try to reduce it even a little. I have been trying to quit now, unsuccessfully, for most of the year.
This might sound crazy, but Melatonin is a lifesaver. I have a sleep disorder as well as Psoriatic Arthritis. 6MG about 1 hour before bed and you can feel it putting you to sleep. No hangover feeling in the AM at all. I had taken muscle relaxers for a year and quit that. The melatonin works better. I also agree about the sleep practices. My sleep doctor recommends it.
I do still have some pain-induced awakening if I am in flare, but otherwise - sleeping is pretty good these days!
I hope it helps!
Sharon
I'm still a newbie, but my sleep problems have been getting progressively worse over the past few months. My doc is still trying to find something that works for me (starting Humira next week after trying sulfasalazine unsuccessfully).

I have a firm mattress right now and a triangle pillow to prop up on, but lately have not been falling completely asleep until 2 or 3am despite trying to sleep around 10...

I take cyclobenzaprine and 2 tramadol before bed, but don't think the muscle relaxer is doing much to help anymore. Only thing I've found that works to get me to sleep is if I'm super super tired and have missed my daytime naps for two or more days in a row. Not the best method, but thankful for the sleep!
What are the withdrawal symptoms of tramadol? My doctor keeps giving it to me, but I am scared to take it.
Originally Posted By: poodlegirl
What are the withdrawal symptoms of tramadol? My doctor keeps giving it to me, but I am scared to take it.


Increased pain, agitation, akathisia (keeping your legs still at night feels unbearable so you have to move them every few seconds), insomnia, chills or "electric" shocks, sneezing, stuffy nose, and flulike feeling, body aches all over.

To me everything is bearable but the akathisia. Akathisia is totally the boss of me.

And I'm not a drug fiend. I take only two a day, sometimes 3.
Wow, Seekonk. I hope you are able to get thru it. Some of that is similar to when I quit klonipin a few years ago. The insomnia and electric shocks. I also had depersonalization.

I did a quick google search and found a you tube video of a guy who said he found that flexeril helped with the akathisia. Not sure if you have already tried that, but thought I would mention it just in case.

I also found an article that says there is a rapid detox available with a drug called buprenorphine. They said it helps you avoid the withdrawal symptoms and is safe and effective. I don't know if that is really true or not, but thought I would share in case you wanted to check it out.

http://www.wisegeek.org/how-do-i-treat-tramadol-withdrawal.htm

Thank you for sharing your experience. It was very helpful to me.
Flexeril is what I am on for a muscle relaxer. I've found that you build up a tolerance after a while. I can now take 2 10mg pills and still be functional, whereas some people can take only 1 and it'll knock them out for 15 hrs.

As for Tramadol, I've been on that for almost a year now and have only had a period of a week without it. I was just lazy and hadn't made it to the pharmacy for a week. I didn't feel any withdrawal symptoms whatsoever. I started off only taking one a day and now take 4 per day. 2 in the morning and 2 at night. It helps me enormously.
For some reason my rheumy seemed to think that I would be better off with tramadol than with codeine (Vicodin) regarding dependency issues. I took codeine for two months last spring, almost every day, and had a week of withdrawal after stopping. Not nice but endurable. Now I've been taking tramadol for six weeks, trying to have as many days off as possible. I haven't experienced dependency so far (not saying it won't come, I just don't know yet).

I've taken Tramadol on and off for four years. I've never had withdrawal or dependency issues with this drug. It's been really helpful and an essential part of my arsenal.

I guess we are all different.
Yes, we are different and there is unfortunately little known on how to determinke vulnerability of dependence. My 23andme gives a little clue in suggesting that I have increased risk of heroin addiction if exposed to it (not that I would ever touch the stuff, but Tramadol is also an opioid). OTOH, I am completely immune to the charms of alcohol, I love red wine at first but it starts to taste really spit-it-out awful after the first glass, and that unfortunately has made me a rather boring party guest all my life. smile God divides.

I don't want my experience to scare off people from pain therspies that can improve their quality of life. I am not abusing the Tramadol given that I take only 2-3 pills a day (I am allowed up to 8), so I am clearly not behaving like an addict. It also works really well for my pain, much better than Vicodin did. I just cannot use it "as needed", since the days I don't need it for pain I would be miserable with withdrawal. I really would like another effective option that can be used as needed, but ai just haven't found it.
I'm a little tardy, but I wanted to respond to this sleep thread. I just started flexeril and it's helping tremendously. As far as sleep positions, I'm a side sleeper and a pillow juggler. One pillow between the knees, one under the head, one or two to support the shoulder. I'm up once or twice during the night for the geriatric style restroom shuffle, and then I have to repack myself in with the pillows. Same routine every time I turn over. One great thing I just found at Sam's Club last month is a firm memory foam wedge pillow with rounded edges by Brookstone. It's perfect "anti-canoe " support for the shoulder (keeps my shoulder from sagging and pulling on my neck and keeps my shoulders from folding me like a canoe). I wish I had bought several of those pillows! They were sold out when I went back, but you may be able to purchase it online from Sam's or somewhere else. I use the narrow pointed edge at my shoulder with the wide edge at the bottom and I add another small pillow beside it so my entire arm is just lying there parallel with the mattress, at shoulder height. This totally takes the stress off of the neck if the elbow and hand are all at shoulder level. I hope this helps someone. It really helps me, although it's a pain to manage all the pillows when turning, but that's just part of the program unless you have a duplicate set up on both sides so you don't have to move the pillows. That's what I'll do if I find THE pillow again. Otherwise I'll keep juggling...it's that good. I take it everywhere with me. It also works well for lots of other positions.
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