I'm a Newbie!

Hello Everyone!

I am so very excited to find "Creaky Joints"!  I have PsA and AS.  I've dealt with the PsA for 30 years, but the AS just sneaked up on me last October.  So, I am learning to cope all over again.   I look well, so it's hard for people to understand that I hurt most of the time.  That's why I'm so glad I found all of you who do understand.  I know it will help me to communicate with others in the same boat, but I hope at the same time that I may be of some help to others, also.

Right now I'm on Remicade, Arava, Plaquenil, Ultram, and an occasional Lortab.  Been through the Enbrel and Humira steps, both stopped working, so I keep searching.  I've had four infusions of Remicade, which helps, but stops helping long before the next infusion.  So, then I go on the steroids to get me through to the next infusion.  I don't like taking steroids.  My Rheumy keeps telling me it will get better.  Another of life's unexpected adventures!

Anyway, enough about me.  I'm just glad to be here.  

Hi there Grundoon- welcome to creakyjoints!

I know what you mean about having trouble getting other people to understand that hurting is just a normal state for us, and how hard it is to function that way. I actually had one office mate throw her neck out, and finally she looked at me and said 'man, I can't imagine how you focus all day when you're in pain like this!', and I realized I have no idea how I do it, its just the way things are, at this point, which is a weird thought. Some people around here have had luck using "the spoon theory" to explain how wearing pain and fatigue are, I haven't used it myself (as in, given it to someone close to me to read), but I found the ideas in it helpful.

http://butyoudontlooksick.com/2009/03/the_spoon_theory.php

I've been on Enbrel and Remicade, and now am on Humira which is working pretty well (knock on wood!!!). If it helps, when I asked my doctor about some of the new medications coming out that aren't TNF-alpha inhibitors like those three are, and whether I would be on one some day, he told me that in his experience, some people are TNF people, some people need to be treated by some other mechanism. So, maybe those three haven't been that helpful because they all work the same way, but now that they're coming out with all these new meds with new mechanisms of action, one of those will really be the one that does it for you. At least thats the thing with these diseases... enough people have them that they're always coming up with something new!

Anyhow, I think finding this site has been a huge help to me in dealing with my RA- it is SO nice just to have people to share this experience with! welcome, and I hope it helps you too!

Grundoon,

Welcome to CreakyJoints! We are glad to have you on the board adn look forward to sharing and hearing all of yours/our experiences. 

As Kate has mentioned about "The Spoon Theory" I have used it several times and too be honest with my kids and family it has done wonders for them to understand, that if they don't clean up their dishes, I might not be able to help them with something else later that day!! So i believe it works.  But that's me.

Post away on the board. I am only on once a week now due to being back to work and my hands hurt after 10 hour day's so usually sunday's is when I have recooped enough to type again.

Tess

Thanks for the warm welcome!  I'm going to check out "The Spoon Theory", sounds intriguing.  Tess, I hope you can find something to help your hands.  My sister had severe rheumatoid arthritis and hand deformities which made EVERYTHING a challenge for her.  I imagine you've also become quite creative in finding ways and tools to be functional.

Kate,  Don't you love it when people say "Oh, I understand, I have (osteo)arthritis in my knee".  But all you can do is sympathize and wish for them that it gets no worse, and go on.  I guess that's where "The Spoon Theory" might come in handy.

My rheumy took me off my Arava because my liver function test were abnormal, so now I hurt more on just the Remicade than I did when I was on Humira!  I realize I'm in a transition period, have only had 5 Remicade infusions, but I sure hope it starts working better soon!  

Again, thanks for the welcome, and I look forward to learning from all of you.

Grundoon