Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Feeling a little Poopy....

Hi everyone,

Like the subject line says, I'm feeling a little poopy. I have been on Remicade (three loading doses so far) and am not feeling much difference. Was also on Enbrel as well, and it didn't do anything either. Went to the Rheumy on Friday afternoon, told him this, was somewhat breaking down in his office as I'm feeling caught between a rock and a hard place right now, and asked him what was next if the Remi didn't work, and he bluntly said "I have no idea." Oh great . So, he told me to have two more infusions and see how it goes. He is also going to send me for a sleep study to see if I have sleep apnea. The problem is that I'm uncomfortable during the night from the pain, and therefore, and fatigued and exhausted during the day because I don't sleep much...just tossing and turning. Argh . I'm guessing they'll see that and just send me back to him with those types of results.

Anyhoo, I just needed to whine to people who know what I'm feeling right now. Sorry to be posting such a downer

Hope everyone is doing well out there.

Trina

Hi Trina - What a cute way to put it! I can relate, but I'm not so cute about it. I've had a bad week, and I feel like crap! Sorry. Does anyone else with As ever wish they could just get away and live as a hermit? I really don't feel fit to be in society with this disease.

Lexus, I (and nearly everyone else here) knows how you feel; I'm so sorry you're having a tought time. Here's what I do re: sleep. Despite the fact that I have a tempurpedic bed (thanks to an employee discount at Brookstone's), I too go through periods where I wake up nearly every hour due to pain and achiness. Not wanting to go heavy-duty with full-fledged sleeping pills, I take a half-dose of an over the counter sleep aid, just to take the edge off, and take 4 ibuprofen. Now, this is not every night, just when I'm having a particularly rough night. As for breaking down, boy I'm close too. Just when I thought I was free and clear of this thing, wham, back it comes again, worse than ever. I keep wondering if maybe this time the flare will not stop. It's killing me in my ribs and lower back and neck. My legs are so sore in the morning that I can hardly walk, at first anyway. And, I know I'm well off, considering that some of you cannot walk at all. I'm just so worried that I will soon join you. Enough about me, Lexus, just trying to empathize with you. Hang in there and just take one minute at a time. Do what feels good: hot bath, a free massage at your local Brookstone in one of our massage chairs, a hot-fudge sundae, etc.

Hi JeanneMedina,

Yes, I feel like crap...both physically and emotionally right now. And yes, I do feel like becoming a hermit with this poopy disease, as I really don't feel like going swimming tomorrow (or anyday) because I know I will be hurting afterwards. It's so tough to even go grocery shopping...unload the car and then need to lay down to rest. Yuck. I would give my right arm to feel normal and sleep through the night.

Thanks for listening to my whining!!

Take good care and I hope that you don't feel like crap for very much longer.

Trina

Hey Trina,

It's so horrible that our lives have now been devoted to finding any sort of outlet for the pain we feel everyday. I do sincerely hope that either the remicade does kick in for you soon or that something else soon works for you. I'll probably be starting remicade soon too since the humira isn't working for me and enbrel didn't either. So I do know how you feel with the frustration and being a little (or a lot) scared of what's next when your doctors don't even know. ...I definitely agree with JeanneMedina in wanting to be a hermit w/AS...we go from being these strong, social people to wanting to curl up in bed, take a painkiller that works, and either sleep or watch movies.

And definitely don't apologize about being a downer...most of us are feeling the same way and feel for you and wish there was some magic we could do to make it go away.

My advice for you is to do something for you...something that is completely selfish and will at least bring a smile to your face, if only temporarily...and to not lose hope that one day we'll pull through and feel okay.

Hope you start feeling better soon,
Jess

Hi Jess,

Thank you for your kind words. Your right, I should go and do something for myself...hmmm...perhaps a spa treatment of somekind. Good idea.

I hope that the Remi works for you as the Humira dn Enbrel didn't... (I was on Enbrel as well with crappy results).

Thanks a bunch,

Trina

Oh Pete,

My ribs, my ribs...when they get really bad I have such a hard time breathing...I know what you feel like. And then all you do is want to sleep, and everytime you change a position in bed, they scream bloody murder at you. Argh. I hope that you find something to numb that pain...it is the poops. I wish you the best.

Trina

Trina, I am so sorry you are still feeling this way. Your rheumy is wise to suggest sticking with the Remicade for a bit. It can take some people months to get positive results from it.

And no-one can blame you for feeling crappy. This disease just plain sucks the life out of us sometimes, especially when the pain is unremitting. Never worry about coming here to talk about it and get it off your chest. That's the foremost reason for KA's existance - support. When you have trouble carrying the load, come here and let us take some of the weight of it from you, OK?

I know what you mean about tossing and turning at night. Dear god, I've described myself as a rotisserie chicken sometimes! Both shoulders and the ribs and the lower back - between them (when they were all acting up at the same time) there was no comfortable position. And you can't just roll over. You have to partially sit up to do it without horrific pain. I had a sleep study done at one point and was diagnosed with Restless Leg Syndrome, which means that my legs run marathons while the rest of me is tossing and turning! They put me on Amitriptylene to control the restless legs and I bought a memory foam mattress, which almost completely eased the rest. I almost wept the first time I lay down to sleep on it, as it was like being enveloped in a big fluffy cloud! For the first time in years, my shoulders weren't shoved up into my skull and my lower back had support. I was able to sleep on my back for the first time in almost 10 years! I miss my memory foam matress (we use Brian's king size bed, but my mattress is a double, not a king, so it's not big enough - I can't wait until we can afford to buy a king sized memory foam).

Anyway, take care of you, OK? Do whatever you need to do to feel a little better. And trust that we are pulling for you.

Hugs,

Hi again Tina - I am finally feeling better today. The flare has ended. I just had one screw up after another last week, following NSD. At least every flare is a hard lesson learned for me, and I will be more careful. I am almost like a normal person. This disease is so bizzar, in how it can make me feel. When I am in a flare I just wish I was dead, but when its over.........it is SO over, like it never happened.

The only one thing I would have to continue as a hermit is my swimming. I don't know why it is not as beneficial for some people, but it has absolutely changed my life. I very rarely miss a day, only if I am a total cripple, which has not happend often lately, thanks to following the NSD. I am so happy in the pool, I dream of being a mermaid, and living under water.

Have a good day, I hope you will be feeling better soon too.

I am so sorry you are feeling so crummy. I kind of indentify with you. I have had my "load", the 3rd one a week ago yesterday and I have been disappointed that I haven't felt a lot better. I know that I am some better because I am not taking quite as many pain pills and I have been able to do a little in the yard so I have decided to be thankful for these small steps and hope that a couple more infusions will make a difference. From what I read, it can take some people longer and visiting with people at the infusion center, some have had thier doses increased.

Hang in and I will too. We will beat this thing together.

Hugs and Blessings.
Possi