Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group so so so much pain

i'm hurting so bad today. i can't even think straight. yesterday, my friend and i drove to portland (about an hour and 15 min away) to go to her cousin's graduation. i was feeling really nauseous i think because of my pills. and she was driving and i get car sick anyways so it was a double whammy. thankfully we made it up there without having to stop. so we get to the school, we have to wait in this outrageously long line. i got to sit somewhere until it was almost time to go in because that would have KILLED my back. we get into the gym and there are tons of people there, so its sooooo freaking hot, and the pills make me hot and sweaty on their own, so again another double whammy. we have to climb up to the top of the bleachers, but it was good because that way i could lean back against the wall like a chair...i lasted about half way through before i had to get out of there cuz it was so hot and i was hurting. i did stay to watch her cousin graduate tho so anna and i left, we went to go get some food.

by this time i'm sweating buckets and hurting like hell. we find a taco bell (yummy yummy in my tummy!) we then get lost trying to find her uncles house...we were staying the night and coming back the next morning. my pills were at the uncles house and it was past due for me to take them. we found the house. then her uncle and grandma want to talk. jeeeeezzzzeeeee. i excused myself for a little bit to take pills and get into comfy clothes. then they drop a bomb on me: we are sleeping on a hyda-bed. totally NOT NOT NOT good for my back. so i'm dreading it. when we finally climb into bed i'm so tired but i can't get comfortable. needless to say i had a very bad night. then we had to get up at 7:30 because anna had to work at 10. just letting you know that 7:30 am isn't even in my vocab.

on the way home i was feeling very car sick, and when i walked into my house the first thing i did was run straight to the bathroom and puke my brains out...thankfully i made it to the toilet. i crawl into bed with a pan and pass out. when i woke up 2 hours later i didn't feel sick anymore but i was hurting like CRAZY. i wanted to kick the [*bleep*] out of the person who ran me over THEN beat me with a baseball bat.

i've taken 2 very hot showers today to try to ease the pain, that didn't work. i've taken all the pills i can...that hasn't worked...i've even drank a few mike's to take the edge off...that didn't work either. i don't know what to do!!! i can't take this pain.

i go see my rheummy on monday and hopefully am going to start Humira, but we haven't heard back from the company yet to tell us that they will pay for me to use the medicine.

i keep crying, but that doesn't help either lol funny thing it just makes it harder to breathe.

Aww Pink, you sound like you've been through hell, you poor thing. But you did it! You made it through! So pat (lightly) on the back for that. Ya, that probably doesn't help, but I really, really hope the pain eases. Hopefully now that you're back home in your own bed, a good sleep will help.

For the nausea, you might consider a non-drowsy type of anti-nauseant. Seriously, zofran has saved my life regarding the barfing thing. No joke. One other thing, I seriously keep a pillow in the bathroom for when I do end up barfing - it's best to pass out on a pillow - can you tell I do this regularly? lol I feel for ya. Pain and puking are not a party.

Hope the humira comes through for you soon. Enbrel was amazing for me for awhile.

Good luck and try to hang in there...
Lots and lots of (gentle) hugs

Oh Pink you poor thing *gentle hug*. Bad bad flare.
I guess you have tried a heatpack.
If you can get someone to make one for you that wraps 360 deg around you. I made one for my daughter for her rib pain and it works a treat.
We both use heatpacks most of the time.
I hope the humira comes through soon

Noelene

I can't imagine how hard this is to get AS as a young student. I contracted when I was 30 (now 35)...so I at least didn't have to deal with AS while living the crazy student life. Big hug to you. Humira has really helped me with the nausea/pain. I used to get a massive flare 1xweek, and now it's about 1xmonth. Hoping it comes through quickly for you so you can get back to semi-normal. For me, I even improved enough to return to trapeze and aerial dance! So many of us have made remarkable progress.

Not sure if I posted to the group, but here's a girl who was so ill with rheumatoid arthritis that she was in a wheelchair. After going on Enbrel, she returned to professional dance and is now in a company. Gives us all hope!! For someone who couldn't walk - look at her incredible flexibility and joint strength.

Article: http://www.arthritistoday.org/community/people-profiles/gabi-rojas.php

Dance on Youtube: http://www.youtube.com/watch?v=g4U9Z2Cl-ZE

Dear Pink, I am so sorry you are hurting. Too bad your story is so typical, (it reminds me of many of my days and other people I know as well) it sounds like a bad flare day coupled with overdoing it. Sometimes nothing helps the pain except heat and getting as relaxed as possible,just not too long, don't want to stiffen up. Survival is the best I can come up with. Plan everything, don't over-do it and take it slow and easy whenever possible. It gets so old hurting and feeling like crap all of the time, trying to function, begging out sick or hurt, having to explain it. AS sucks for me but it sucks even worse for others and when I am really suffering Ilike to go comfort them, that's the best medicine, comforting and encouraging others!!! I tried for so long to get help and it was such a revloving door that I gave up on help. (I know it is a matter of time before I go back to doc though,I am actually trying to figure that out now.) I hope and pray that you find some relief. Heat and the right combination of activity vs rest is the best I can tell you. You might as well get used to the pain. I have felt this way for most of my life no matter the doc or med I am on or not on. Now all meds make me sick, even eating is hard alot. (I hate nausea and stomach problems.) I don't know if IBS or meds or both did that. It sucks but it's reality. Build your life around it and don't let people who don't understand get you down. You most likely will have to live the rest of your life dealing with stuff like this so plan accordingly. In the end, the bulk of your care is up to you. peace and comfort from one hurting new member to another hurting new member, I feel your pain
alan

I don't know if it will help, but my sister swore by ginger when she was suffering from morning sickness! I know a few people who also says it helps with car sickness. Pain is awful, but feeling sick is worse! I always say I would rather have pain than nausea

Hope you have recovered from this.

All the best,
Emma.

Ah, Pink, I can feel your pain coming through the monitor after that story. What a nightmare, and while I haven't encountered anything quite that bad when traveling, I've certainly had my share of surprises regarding seating, or bad weather, or so many other things that can sneak up and make a seemingly innocent trip suddenly turn hellish. In fact, I'm sure about every person here at KA can sympathize with and relate to that tale!

I sure hope you are feeling better now, and, if not, I hope your doc is able to help you out when you go in for your appointment. Good luck!

Brad

Pink, I'm so sorry that your pain is so bad. It sounds like you had the day from hell. I hardly know what to suggest but talking to your doc about pain management seems important. It doesn't sound as though anything you are taking right now is helping.

Hope things improve soon.

hi pink,
I was on both amitryptoline and ......alazoprame..when i stoped both, at the same time, I was amazed at how I clear up.
Keep at it. journal what you take and when.
as well as foods.
I bloat so bad, it is obvious when I am reacting to some foods
Keep us posted...