Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
First time here. I'm 38. I've had RA for 10 years. I'm a single Mom, 2 young kids and I have them 24/7. Dad is not around.
I've plateaued on MTX.
Tried Humira for about 2 years then it stopped working.
Enbrel didn't work.
Just started Rituxan 4 days ago.
But am I crazy? Am I pushing too hard to be 100% pain-free when really I should be focused on being mostly pain-free? I have no perspective.
I can get through my day fairly well. Stiff and wrists on fire every morning. Usually goes away within 2 hours. I can get kids ready for school. I can work all day, make dinner, get kids to bed. But I am tiredreally tired by 8 every night. And the pain comes back once I slow down because I don't have a distraction.
I have a LOT of years ahead of me with this disease. I know I am much better off than others. But maybe I don't notice medications working becauseI'm not that bad off???
I just want to feel better. More energy. More hope. Less pain.
I've plateaued on MTX.
Tried Humira for about 2 years then it stopped working.
Enbrel didn't work.
Just started Rituxan 4 days ago.
But am I crazy? Am I pushing too hard to be 100% pain-free when really I should be focused on being mostly pain-free? I have no perspective.
I can get through my day fairly well. Stiff and wrists on fire every morning. Usually goes away within 2 hours. I can get kids ready for school. I can work all day, make dinner, get kids to bed. But I am tiredreally tired by 8 every night. And the pain comes back once I slow down because I don't have a distraction.
I have a LOT of years ahead of me with this disease. I know I am much better off than others. But maybe I don't notice medications working becauseI'm not that bad off???
I just want to feel better. More energy. More hope. Less pain.
I'm not sure how it works for other people, but for me,I'm happy when the pain is at a level where I can function.
If I can get through my day with an ibuprofen or 2 to take the edge off I feel like I'm having my best days.
To be completely pain free is a wonderful goal, I'm just not sure if it is truly attainable.
By the way I did MTX, and Enbrel had serious reactions, ended up with drug induced Lupus. So now I am taking Orencia infusions I have seen a great improvement in just 4 months, also 400 mg plaquenil, and 3 mg Prednisone.
Good luck I really hope you can get to a place where you are 100% pain free.
Hugs,
Jan
The tireness improves also, but you still need rest/breaks during the day. When you get that fire under control, life will get better. That fire is your RA eating your joints. Hope your new bio will work, it took me 4 to get to the one that worked.
Hugs
Lin
I struggle because I've had doctors look at my charts and see "nothing." My inflammation isn't always visible.
I'll be toldwhat are you complaining for? You can walk, move around, work. Stop complaining."
So I'm stuck trying to decide if I still have room to push for improvement. Understand? Or if I'm being extra whiny
You will see that posted alot... and it's true, you will hear all kinds of dumb remarks.. I usually get the ."How can you be in constant pain ? I never heard of such a thing. hang in there...
I am doing pretty good now, but I am not as I used to be. I can do everything I need to and some of what I want to. Just trying to find a way to be happy with what I have. It helps to try and focus on positive things and on how much better I am now.
I think everyone's pain tolerance is different so it's kind of hard to gauge if medicines are working except for lab work. But needless to say I also like all other folks with RA strive for better days and hope and wish for pain free days, for one day reaching remission. We can loose hope we must stay positive.
Best wishes,
Roni
I think we do have to accept our limitations, but never give up and never stop trying. You have asked a very important question. RA does not make us someone else, but we do need to work at finding meaning in life in spite of this disability.
people who look at that like you should be well. are not your friends or even a understanding doctor
hugs sandi
And I totally agree...there should be no fire!!!!!!!!!!!!!!!!!!
If you pain is that bad, you need more pain meds for relief, you are already trying on the RA meds. With pain meds, and mtx working, I expept to be able to do things without constantly thiking of pain. I expect to be able to relax to rest. I don't expect tiredness to go away, and I sleep about 14 hrs, night and naps, plus resting. I am doing more now that I have done for several years.
51 Percent...I was unhappy to see your comments about back surgury. I have three "bad" vertabraes, one pinching the nerve in my right arm and making it hurt terribly. My Rheumy told me to call it Inflammatory Arthritis, and that I would would end up having surgury at some point. I was really hoping that, when they did do surgury, they could get rid of that nerve pain....doesn't sound like it though.