Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Up in the night...

The sleep issues are killing me! It's the unending cycle, lack of sleep is my trigger for a flare. And now the pain is keeping me up!!

I spoke with my Rhuemy today, we had a nice long chat. Thanks to this site, I was able fully talk about everything that has been going on instead of thinking it was all in my head. We're taking a different approach to my treatments. The only change I'm on the fence about is that we changing my pain meds to the narcotic level. I really dislike the narcotic pain relief I feel like I get into a fog I can't get out of, but hopefully it will be short lived.

My primary Rhuemy is in his Fellowship for Rhuematolgy, and I've met all of the other Rhuemy's and I really liked the main one I spoke with tonight - he reaffirmed that their goal for me was complete remission. My goal is feeling 50% better than where I'm at now. I can handle slight fatigue and aching off and on, just not the constantly that I'm doing.

On another note - my hubby and I are going to be moving back to Northern Utah. I have to say that I miss home terribly, although - I know the cold that kills me and the climate down here in Tucson is wonderful, but there's no place like home. We are thinking we're going be go back up by the end of summer next year, personally I'd like to be up there before we have to endure another 115 degree summer.

Anyway, sorry for rambling - I'm up in the night cause I can't sleep!

Welcome

I know your pain and wakeful nights.

1. Have you been tested for sleep disorder.
2. Ask about natural med (Seriphos - at health food store), to help with sleep, instead of narcotics.

I had severe sleep apnea until about 4 months ago, when I was diagnosed with Celiac. Now I am down to mild->moderate range - will always have to use CPAP.

I also have severe insomnia - which I take Seriphos, for.

I use lots of pillows, so I don't move around in bed. I can't ever have pain pills because of severe allergies, and elevated liver enzymes (which doctors have no answers for - never drinker or drug user).

Just some thoughts

Hugs

Gerri

Hi there again! I think we all are on the same page with you in regards to the lack of sleep I'm either totally fatigued or wide awake, no in between! I hope you new appraoch works well for you! My dr doesn't seem to want to change mine and I'm getting way worse I hate it. Trying to stay strong but losing the fight. Maybe next week! Its winter here though ;-( Let us know how your treatment works out! Take care!

Hi Misty-

I can't offer any help on the sleeplessness- I just wanted to say Hi and I am in Tucson also. Maybe we see the same Rhuemy. Good luck!

Anna

Hey girl, sorry to hear you can't sleep... I know I usually don't *want* to sleep, knowing how uncomfortable it is to lay down sometimes and how much it will suck in the morning. I actually started a post earlier this week under "Tips" re: the whole sleeping thing. You might want to try something like valerian root or melatonin which can be very effective, as can benadryl or dramamine. Or I would think maybe your doctor could give you something rx.

I sleep with no pillow or a travel pillow (bean filled). It is amazing how much that helps. Electric blanket is essential too, and I usually use a memory foam mattress topper, though I used a featherbed one night earlier this week and I found I slept exceptionally well.

As for pain meds, I can say that I have been on them for a long time already and recently had to up the dose. I find I function much better with them, since without I don't know how I would take care of my kids and work full time. If you're in enough pain to really need them, you may find that you're less "fuzzy" than you think you'll be. If you get really tired or whoozy, it's probably too much medication. I see a pain specialist because of confounding car accident related issues with my back/neck and have herniated discs with nerve involvement throughout all levels of my back plus severe facet syndrome. I am 35...

I wish you well in giving the pain meds a chance just to see if they help and it's always about balancing benefit/risk to some extent. I used to worry a lot about dependence but at this point, I don't anymore. I am lucky to be holding my own in career due to great flexibility for telecommuting throughout the week.

Wishing you a good night, Jess