Spondylitis sucks the life out of me.

On the 21st I go to my first physical therapy appointment. Here is hoping doing so actually affords me the ability to enjoy some of summer! I'm finding on hotter days my hips get very inflamed. My last bad flair up was when we went to California in May, I'm sure the heat doesn't do me any good. On the hottest days lately I'm very stiff and weak. I'm trying to keep ice packs handy, I guess it helps some. Mostly I just want to sleep. I slept 11 hours last night and then a several hour nap in the middle of the day! I feel like I'm not living when the need to sleep is this great. A.S. is to blame though, the nights I can't get into any comfortable position at all really make the sleep debt add up. I think the most annoying thing I'm currently dealing with is when the hip inflammation makes me feel like I need to pee every 20 minutes!

I am looking through a support group on Facebook for those of us with Spondylitis and I thought I'd save a few quotes from other people. I find that by reading how others describe dealing with this pain in the butt that I can relate and not feel so alone in this disease.

"Hi, I have been living with AS, Rheumatoid Arthritis and Reiter's Syndrome along with all they bring to your life, for 30+ years. I have found out one thing. You do not find a cure for this disease, you only manage the symptoms enough to give you a decent quality of life."

"Hey, I'm 25 years old and was diagnosed about 10 years ago with AS. I've been on most meds. There have been times where I cant get out of bed on my own, or even put my own shoes on. I'm currently on Remicade treatments about every 4 weeks. Remicade really has changed my life, mostly good, but some bad. Since it weakens your immune system, somebody can breath on me the wrong way and I'll get sick, but I guess thats the price you pay when you don't have to walk around in pain 24/7."

"I have AS. It was diagnosed as a slipped disk from my very early 20's until last year (when I was 33yrs old). My spine has fused in my neck and thoracic vertebrae. This is a terrible disease and my heart goes out to anyone dealing with it."

"AS sucks and is ruining all the fun i could be having playing rugby. what can i do before a game so its bearable to run and tackle? i don't care about afterwards...just the game..."

"After some test they found out i have elevated inflamtion in my S.I joints. They then told me that i would have to try different medications to tery and get rid of it. Most of them made me sick to my stomach and i believe one of them was recalled. My mother and I were becoming increasing upset over nothing being done and my mother started looking up disease that it could be. She found AS on the internet and pretty much diagnosed me before any doctor. Just as the Rhumetologist was about to give up they sent me in for a C.T scan. On the results they found erosions on my S.I joints. By this time my mother and i knew that they couldnt have formed over night and must have been there for some time. Once they had discovered this they suggested i start taking Enbrel or Humira.But as a teenager i didnt think i could handle it myself and now i am currently on remicade. It kinda of upsets me how these doctors can give up so easily and puch people to the side."

"I think I hurt everywhere tonight :(
Back, legs, ankles, feet, hands and wrists.
I dropped somthing on my foot at work and I think everything decided it needed to hurt too. I am very stiff tonight after resting from work. My son said I sound like pop rocks whenever I move :("

"I don't mean to sound like a sap, but I'm just wondering if anyone has any suggestions to deal with the whole depression issue of AS. I mean I wouldn't call myself clinically depressed or anything, but during those flare up days, it just seems so hard to deal with emotionally. I'm currently experimenting with different types of meds as prescribed by the rheumatologist, but until I find one that works, I have bad flare ups somedays that seem almost too bad to handle. Any suggestions on coping with this?"

"Dave,lost my job because of spondilitis last year,a very messy affair resulting in a tribunal next month.
Anyway all I am claiming at the moment is incapacity benefit,which is not worth a carrot.Finding a job that I can pyshically do I proving more diffucult than I thought.
Here's to a sucsessful tribunal."