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

From all your comments I have deduced that I need a recliner!!! Haha.
I'm on Gabapentin and Buprenorphine patches.
I haven't seen a pain specialist. I'm just waiting for my appointment to come through for my Rheumatologist!! I'll ask about biologics when i go!

Pea- have you still got that article or can you please tell me how to find it?

Thanks for your advice everyone! Xxx

Pea, do you have a link for that article?

I have a membership with the A.S. Association and that is how I get the articles. I will have to dig for it and see if it is doable.

Thanks Pea...I would be great to have a read and maybe pass it on to my friends and family. It's difficult to help them understand what's going on with me! I feel like they are bored of hearing about it..especially when I'm flaring up. My dad is a godsend though..he really looks after me!!

Moo xxx

If your friends and family have email, you can consider sending them an AS awareness video, such as:
http://www.youtube.com/watch?v=7Yx9XS7llUo
There are brochures...for sale : (
http://www.spondylitis.org/store/products_all.aspx
And here's a page with a poster, that if you click on the poster you get a pdf:
http://iaamovement.org/Ankylosing_Spondylitis.html

I hope you feel better soon, and this flare is just a short term thing. I'm glad your dad has 'got your back' no pun intended, and I truly understand how challenging it can be sharing what's going on with family and friends, how much to tell, dealing with their reactions...it's hard.

Here is another one that I gave out to my family and friends along with a booklet called "But You look Good" and it is by the Association. Not the one I was referring to but this a good one:http://www.spondylitis.org/about/complications.aspx

Well we have your back to Haley. It's nice to have support from family and friends to but sometimes they are the worst to get it from!

Thanks everyone!!

Tried just sleeping on the sofa last night...same as the bed..woke up in agony. I am so so tired. I just want to be able to have a lie in like I used to! I want to catch up on sleep but I don't seem to be able to.

The pain literally takes your breath away doesn't it!? When I wake up in agony it's difficult to breathe properly.

I'll have a good look at those links...thank you

The support I feel from you all on here is fantastic!!

Moo xxx

I can not sit or lay on our couch even a short time, its too soft.

We bed shopped for years before I found a bed that was good for me.

Even with that, I rarely sleep all night in my bed.

Most nights I either sleep all night in my recliner or

the first half in the recliner, then when I wake, the other half in my bed.

that's best for my neck.

if my SI is really flared, the recliner is usually too much for it, then its to the bed most of the night.

i've been known when like you, to take a hot shower and muscle relaxant before bed, then when I wake, repeat the shower and if its been long enough, the muscle relaxant.

Every night starts with a muscle relaxant.

i've been known when very bad to go to bed with ice packs where needed; usually either the upper back (if its the neck) or SI.

when in bed, i can only use a thin feather pillow because of my neck. and must put pillows under my knees and legs (not too high or i get hamstring tendonitis / enthesitis behind the knees but enough to tilt the pelvis just right) for my SI.

I also suspect that they aren't managing your inflammation well enough.

My rheumy said in between my flares, I should feel as good as I do when on the prednisone for my flares.

That NEVER happens, though better between flares.

Thus will be having a conversation about humira, next visit.

Hi Haylee,
Sorry to hear about your pain and early morning rising.I was waking up at 4am very often. I did some changes to my diet and now I sleep in until 5-7 am. I don't seem to wake up at 4 am as much anymore. Its funny , last year I was up at 4 am often I knew all the 4am shows on TV.
Have to taken out some foods in your diet that might be casuing some pain. Juicing fruits and veggies gets me feeling better. Have you see "Fat Sick and Nearly Dead", it interesting, the man has an autoimmune disease that causes him to have a painful rash, he juices for a couple months and clears up his rash and looses 80 pounds. You can watch it for free on youtube or hulu I think.
Take care!