How do I say I still feel terrible all the time without sounding like a whiner?

First off, I love the screen name. 😀 Second, I get what you are saying. For a while I just would say, "fine," because it's so bland and ambiguous. You are right in that there is anew normal to accept, but that doesn't mean you have to love it every day. If someone asks, I say, "you know, pretty good but this isn't great." Or something along those lines. I find most people will be OK with it as long as I don't harp on it for a while. If i'm being honest I have discovered that most people have a tolerance for a little bit of truth in our illness, but not a ton. It's just the reality of it, as painful as it is for me to say. Then again, you probably wouldn't want to hang out with someone who was always saying nothing is going to work out and everything sucks either, so I can kind of see their point. It's a fine, fine, line, but you'll find it, we all do eventually as RA patients and in the meantime remember you're not alone. We are here for whatever we can do! Keep on keepin' on, DPM

Thank you for that. Yeah, with most people I just change the subject - I say something like, "Oh pretty much the same - hey, I heard your kid got a new puppy!" (lol) And I find that even the people closest to me are uninterested, so I generally don't talk about it. I do burst out with "ow!" when I put weight on my feet in a new way, or groans of pain as I walk around or have to bend to pick something up, or have to take hold of something, sometimes, but only when it's really bad, lol!

Thanks for sharing. I can chime in that we're all worned about how terrible prednisone is for you long term, but, honestly, it's the only thing that actually reduces the pain and swelling for me. Compared to the "black box drugs" which will hurt your lungs, liver and everything in between, are the side effects really that bad? As an older woman, I already know I'm facing weight gain and osteoporosis (which I've had since my 30's anyway). If it works, I'm going to keep taking it. Hey, it's alot cheaper than the riskier meds. Maybe that's why we're pushed away from it in order to roll our health dice on the pricier, big pharma drugs?? Hmmmm?

Hey !

Thanks for sharing your story. I am so sorry you are dealing with so much pain.

I think you should seek a second, third or fourth opinion until you find a doctor who is willing to work with you and treat your concerns. I agree there is a "new normal" that involves pain (in my opinion) but you shouldn't have to live with so much of it that it affects your daily life.

I want to share the 'find a doctor' resource from the Arthritis Foundation with you. https://www.arthritis.org/find-a-doctor

It helps you find rheumatologists near your zip code. There is a treatment plan out there that controls your symptoms, just waiting to be found!

I hope you feel better soon. If you are comfortable sharing, we would love to hear an update! All the best, Monica