Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Boulder on my Sitbone

Hey all, I'm just posting to complain a little. I'm pretty sure I've been in flare the last few weeks. It's been so long (since the day I started Remicade, August 11, 2005) that it took me a while to recognize what was happening.

I've been in unremitting pain the last few weeks. Left neck, thoracics, right lower back. Low level alot of the time, escalating when I'm tired or have over-worked. I've kept up my exercise through it, as I'm determined not to let it slide. I've only taken Celebrex a couple of times, not because I didn't need it, but because I don't want ulcers again. So, I'm continuing with everything I've been doing all along - diet, supplements, exercise and my nightly herbal - and I'm hoping mightily that all of the non-pharma treatments I've maintained over the last 2.5 years will continue to do their thing and keep me from horrific pain.

It's been a rough six-weeks. Work stresses more than anything. Most of them are resolved now, thankfully. And then fighting off two colds and the infected toe, not to mention the bashed shin and now a couple of bruises I don't know where they came from. My sleep patterns have been affected and I'm back to rotisserie-ville when I sleep at night. My poor sweetie's sleep is being affected by how restless I've become. Too many days have ended with me wanting to scream from the thoracic pain and now, I have this boulder attached to the end of my right sitbone that is driving me to distraction whenever I sit for any length of time. Which is every day because I work at a desk. And, of course, my period just escalated everything. argh.

My moods have devolved with my pain levels increasing and I'm starting to get ticked off at stupid things again. Haven't done that in a long time either.

My sweetie has been wonderful and appropriately sympathetic. He holds me when I cry (haven't cried over the spondy-monster in, well, 2.5 years - now, it feels like I could cry 24/7) and then holds me as I fall asleep.

I'm off to my chiro in five minutes. My Remicade is Wednesday week, and I have an appointment with my rheumy a week after that to talk about what's going on.

Anyway, I just needed to talk to people who get it. I'm coping pretty well, considering, and I'm very proud of myself for that. If you could call wanting to amputate your right butt cheek to get rid of the boulder "coping pretty well".

Warm hugs,

Dearest Kat,
Stretch out the sitbone!
If it is right under the hip, donotlet it get tighter.
Just my experience, stretch every which way you can untill it makes you cry. Of course, I may be wrong, but might freeze up in a weeks time if I do not bust them lose every day.
I am glad that he loves you so.....

Kat, I wish I was there just to give you a hug. Hopefully the Remicade, will help you get back on track.

Take care

Many hugs going your way.

Hugs

Gerri

Kat, I'm sorry you are having such a hard time. I truly hope things get better soon for you. You are always really supportive of everyone here on KA and deserve an easier time. Feel better soon.

Kat,
Sorry to hear this. AS pain that comes creeping back after a long time of airy-fairy-remicade-wonder can upset you violently. It did me. And it wasn't all just about the pain itself. There was also a lot of fear linked to the memory of pain. Ultimately it was the combination of pain and the memory of many years of pain that made me scream into the pillow. Many times it was more the fear and the painful memories than it was the pain itself.
Be gentle to yourself. And swim, swim, swim, stretch, stretch, stretch as much as you can while you wait for your next infusion.
Here's to relief soon.
N

I'm sending hugs and plenty of white light your way, Kat. I'm so sorry you are heading into a flare and I know it must be frightening when you remember your pre-Remicade days.

I hope you can get some relief, but meanwhile your fighting spirit sounds as if it is alive and kicking.

Karen

i hope you get some relief soon.
i'm always amazed at just how strong everyone here is.

i don't know if this will help you or not, but when my SI and/or buttocks is bad, i take a hot bath or shower before bed and then sleep on an gel ice pack, putting the ice pack under either the spasming muscle or inflamed joint, whichever is the worst.

sometimes there are too many body parts that hurt to ice everything at once, so i have to choose.

during the day i'll alternate ice and heat, but it gets old when i have to do that most of a day.

i'm sure you know what works for you though,
so just sending my thoughts mostly,

sue

(((BIG HUGS))) that's a horrible pain.. in . . the ...rear. I've not found a single thing to take that one away for 12 years..... I'm hoping you'll get back on track soon.

the comments of the fear of the memory of the pain or the fear of the future with pain really struck a cord with me.. That is definately true. Hang in there, hon!!

Thanks, guys. I'm in a bit better shape today. But then, it's only 10am and there's lots of day left.

My chiro helped. By the time I was safely installed on the couch the neck pain had died down and when I left her office the boulder on my butt was half its original size. 300mg of Celebrex when I got home made it possible to get to sleep. I missed my dance class last night. Usually I go regardless of how horrible I feel because I know how much better I'll feel by the end of it, but by the time I was finished at the chiro I was toast. So, I called my sweetie to let him know I was on my way home and got on the streetcar to the subway. I'm so glad I called him because when I got home he was all ready to look after me. Which is a really good thing because I was in tears as soon as I walked in the door.

Fear of devolving to what I was pre-Remicade is definitely a factor for me. Even last night was still better than pre-Remicade. I have always said that if I ever have to go off Remicade, I'll be grateful for the respite it gave me and move on. I'm not saying my Remicade days are over, but I am grateful for the past 2.5 years. They have been a gift. I'm going to fight to keep going with this. I'm not ready to give up on it. But I am truly grateful, never more than I have been the last few weeks when I've had such a visceral reminder of what life was like before Remicade.

Today, my sitbone boulder is as big as it was yesterday. I have Celebrex in my purse in case it gets really bad. And I'm going to the gym tonight come hell or high water, because even if I only do 15 minutes on the treadmill and some stretching or pilates, I know it will be good for me to move. I'll just be extra careful with those areas that are already inflamed.

I don't know that I'll have to go off Remicade. Maybe we can up my dose or something, as I'm on the 300mg dose. Upping the frequency to six weeks could be problematic with my job. They haven't said so, that's my fear talking. It's just been so nice to have energy and be relatively pain free. I don't want to give it up. I warned my sweetie last night that I may become a tad AS obsessed over the next week. He said he'd figured that might happen and is ready for it. Anyway, I should get to work.

Many hugs and thanks again,

Hi Kat,

Hopefully, Dr. I would sort it out for you. You might have to go to six week schedule. That's the protocol they use in US. Hope you feel better soon.

Ali