Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group sleeping

Hey Maggie!

(Yes I was listening - thank you - but I'm far from being a doc yet, might change perversely when I actually am ).

Anyhow - about sleeping. It's been a good two years since I've slept through the night (oh god! make that three). I've got lots of tips.

Heating pads are good - but like you say difficult this time of year. Something that might be a bit more bareable this time of year would be hot/cold treatments. Lots of variations of it out there, I'm sure, but I like 3-4 minutes hot, 1 minute cold. Always end on warm. You might try a few repetitions of this before bed. It might calm things down a bit, and the heat might be more acceptable with the cold.

Alternatively, I almost always just take a bath before bed - might not be acceptable with your warm weather.

Body Pillows are amazing creations. I've found a position that is really comfortable for lower back/SI pain (lots of the pain down your legs is likely referred I might imagine). On your stomach, with the most painful leg out to the side and bent up. Takes lots of the pressure off of those SIs.

Have you thought about trying massage? I know that isnt an immediate sleep aid, but it might help.

If all else fails, you could try sleep aids. One that docs often recommend for people with chronic pain isnt a sleep aid as much as its a low dose antidepressant Elavil (amitriptyline) that seemingly helps to restore natural sleep patterns. It's not addictive like the others. Ther's another newer agent called Zopiclone - less addictive and 'druggy-feeling' as the older ones. They're options too (if you ever go to see a doc that is ).

Hope you find something that helps soon. Losing sleep just makes everything else harder to deal with. Hang in there.

Hugs,
Jeanna

MADE IN CANADA

Maggie.
I can relate to your pain. Luckily though it has not been that intense in a few months. Anyhow what I find helps is sleeping in my recliner part of the night. It takes some of the weight off those pressure points. We went out in the early Spring just to purchase a recliner for me to sleep in. We ended up getting his and hers.
Take care and I hope you get some sleep soon.
Cara

Hi Maggie,

You've had some good advice here, and to add to it I'd like to suggest you give the NSD or LSD a trial (newcomers - these aren't heavy drugs but diets )

Before I did it I never got a full night's sleep in, would sometimes wake up crying from the pain, or wake up just from trying to turn over, could never lie in on my days off as the pain and stiffness drove me out of my much-longed for bed...you know the picture.

The diet has helped make this a distant memory, and on the odd occasion where I might have some kind of (usually minor) flare, it is nowhere near as the bad as the pain I used to have 24/7, and those minor flares make me shudder when I recall how life used to be for me. I know from what you've said in a post way back that you thought we were quite similar energy wise (as in not having any) well I don't have that problem anymore either.

C'mon Maggie, you must be sick to death of me bleating on about this diet...why not try it just to shut me up But seriously, it could well be the best thing you ever did.

Take care,

Jan

http://www.feelgoodcatalog.com/Default.asp

Hi Maggie,
This comfort-U pillow I bought out of the sky mall catalogue after seeing it on a flight once. It was designed by an RN with Fibromyalgia. It has been very helpful to me most of the time...occaissionally even that doesn't help at all and in fact makes things worse, but most often helps.
It is pricey, but the only one of it's kind that I've ever found.

I have the same problems you mention and feel for you....I do hope you find some relief soon.

Leona

consider yourself hugged!
Love like a teddy bear, with imperfect eyesight and arms open wide.
I made the link clickable... Mike

Edited by grinnbearit on 08/21/02 04:49 AM (server time).

Sorry....in the search box, type in Comfort-U

Leona

consider yourself hugged!
Love like a teddy bear, with imperfect eyesight and arms open wide.

Maggie, I too feel your pain. I try to take a klonipin along with a percodan before bed and that gives me at least 3-4 hrs of sleep. Not wanting to take more, because I will be groggy in the am, I sleep in the recliner it keeps my legs elevated some and takes the presure off my back. Other times I just sit and cry, sometimes nothing relieves the pain. I think the pain causes more wrinkles than sleeping on your tummy. If you could sleep painless you would get less wrinkles period. Any who wrinkles add character right?. I wish you many pain free nights and days and I will think of you when I am up wondering the house. Peace. Rose

I too have been through the vicious circle of not being able to sleep because of the pain and having more pain because of lack of sleep.
What's worked for me and I've noticed others are on these meds too are Trazodone (promotes deep restful sleep), and flexeril (muscle relaxer) taken before bedtime.
But until recently (thanks to Vioxx) I still had difficultly because of pain, getting out of bed in the morning, but I did get good sleep. Now on 50 mg of Vioxx I feel pretty normal just a few aches and pains. And I can get right up and out of bed!
I've been told Trazodone is pretty harmless and it works well, I've been on it for years!
Hope this helps.
Becky

Maggie,

Knock on wood I sleep pretty good at night even when in pain. I always take my medication (Celebrax) one hour before going to bed. I have always slept one one side or the other for thirty years but when AS took over I asked the Doc. about sleeping and he told me to learn to sleeep on my back as still as possible and use a firm mattress. I have learned to sleep on my back and very still all night until that dreaded time to go to restroom. Usually about three oclock in the morning. I sleep on a hospital bed with remote to raise or lower legs or head. I have a overhead lift to pull myself out of bed so I do not have to twist. This has helped a lot. When I first go to bed I slowly, over a period of about 10 minutes lower my back and head until they are straight. If in a lot of pain I stay upright a liitle longer. This seems to work real well for me. I tried every kind of sleeping possible and this works for me.

P.S. Even during bad flares I can make bed comfortable to maintain in.

Rickey

Piggy backing on what Becky said, Trazadone has worked wonders for me. It is another anti-depressant but you are given such a low dose to make you sleep good that you aren't into the therapeutic level that they use for an anti-depressant.

I have tried everything, and I mean everything. There is alot of good advice in this thread. See what works for you. If you just can't get it right, talk to your doc about Trazadone. That way you can have a full nights sleep and function all day. It was my last resort.

Good luck!
Cristina

maggie...

gee...how horrible!

i take ambien which is a prescription medication. it makes you fall asleep really fast, no matter how bad it hurts everywhere. and the good news, when you wake up, you're not groggy so you can start the day refreshed.

without sleep, i think i'd go insane.

please call your doctor and ask if he can prescribe it. i used to take 10 mg, but now i take half (5mg) and it works well for me.

leslie