Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Please help!

Hey guys and gals!

I was just wondering whether anyone was having the same problem as me?
I am waking up from about 4am physically unable to stand a second longer in bed. My back is so painful from the bottom to the middle and incredibly stiff!!
I am currently attempting to lay on the sofa with a hot water bottle.
I have not long since bought a new bed (had it since roughly Jan) and its meant to be orthopaedic...I do think I would experience this regardless of the bed.

I'm at my wits end!!!! Been doing stretches morning and night because I've also had trouble with all the muscles in my back tensing too but I can't really do them in the morning with being in such pain!

Do you guys have any advice? Is anyone having the same problem?
I do have an official diagnosis of AS (1 1/2 years).

Sending healing thoughts to all of you experiencing the Spondy Monster!!!

Love Moo xxx

Hi Moo. Yes indeed, I have the same thing happen. I have to get out of bed and go to my recliner in the living room and finish sleeping there. Been doing that for a long, long time. Sometimes taking an Ibuprophen a few hours before helps or maybe a Celbrex earlier in the evening.
I was at an AS meeting and one lady said she hasn't slept in a bed for 3 years. So....it's a common thing unfortunately.

Good luck!

I've just finished my sleep on the couch. I'm still in pain but it's a pain I can sleep through! May have to start doing this regularly!
I've just started taking Gabapentin so trying that out!

Thank you for your comments!
We're all in this together!

Moo xxx

Hi Moo,

I went thru that for about ten years, now at 50 it has settled down. I slept in my lazy boy recliner for years. Have you been able to try the biologics ?


Janet

10 years!!! Wow! Biologics?? Xxx

Sorry to hear you are having trouble sleeping. I too have had this problem and I haven't slept in my bed for about 3 yrs. I have a mattress on the lounge room floor and my recliner, I alternate between the 2 depending on what is hurting the most.

I am glad you got a bit more sleep on the lounge and hope you find something long term that will work.

Yes this is VERY common. I wake up feeling like my body will burst into flames if I don't move. But, my back and hips are locked up and I CAN'T move. so there is a period of time where I just try to rock my hips enough to get them to move and allow me to get out of the bed. I rotate my sleeping from floor to chair like others have already said.

(Biologics are the anti TNF blockers like Humira and Enbrel, I am on humira and still have this happen)

OH, that's awful. That is something that is unfortunately all too common with AS.
I would take a hot shower immediately when you wake up, walk around a bit, don't even try to stretch or anything.
And I would cut out every bit of starch in your diet and just eat cavegirl style!
http://www.thepointmag.com/2012/essays/plea-human-food
Gentle hugs from,

((Moo)) I am so sorry. Yes, I do this about every night. I am having better nights since I am using Lidocaine patches at bed time and pain meds. Talk to your dr and see if he can't come up with something to help you.

When I wake up like this, I get up and make a cup of herbal tea to help me relax and turn on the heating pad and read a while. Usually I can go back to sleep eventually even if it is in the recliner.

I hope you are having a better day and have a better night tonight.

Hugs and Blessings.
Possi

Hi Haley,

Yes, yes, and yes, we all experience this. I couldn't take it anymore after 4 years. It took to long for my pain med's to kick in. Most of the time, I would take one, my husband would run me a hot bath (yes, in the middle of the night) and I would get in and wait for the medication to kick in. If I didn't take it every 4 hours, I would get into that kind of pain again. I took about 3 baths a day and through the night.

I have tried it all, from diet to procedures to pain med's. Still on a biologic, Remicade for my Uveitis but my pain specialist told me that I was out of options and needed to have a pain pump implant. Now I wish I would have done it at least 2 years sooner. I now sleep through the night and wake up and roll right out of bed and start walking just like a normal!

I feel bad for you and everyone else. There was an article recently put out by the A.S. association that described in detail what is happening when all this pain and fatigue occurs. It was quite and eye opener and I made copies to give out to my friends and family so they could see more clearly, why this crap H-U-R-T-S! Please Haley, let us know if anything helps. Are you seeing a pain specialist?