I'm a little confussed. I'm new to all this stuff. I went to my rheum doctor today. Because a week ago my wrist swelled up. I couldn't get in until today and acourse the swelling is gone. Every time I get into see him I'm all better.
My stomach as been hurting alot so he told me to take 2 mtx in morning then 1 at night once a week and two celebrex every day. He also said to take 4 folic acid a day also. I sure hope that help the belly.
The last two months my alt was up to 60 a little high. He didn't say any thing about it.
I aske him if he really thought I had RA since I only get pain for 1 or two day once a week. He looked at me real dumb and said you know that answer. I guess I still dont believe it yet.
I asked him if this was going to get better stay the same or worst. And I knew the answer was you don't know.
I already have arthritis in my spine, and in my right shoulder. I also had a head injury in 2003. I has in a lot of pain from that accident. Two yrs of ph threaphy and one yr of cognitive. I had back pain for 2 yrs straight I was to the point to just give up. I was all muscle pain different from this. Well any way I got the shots in my back and it was great was pain free for 2 yrs. The in Oct I found out I had RA.
I'm a little confussed because I read what you guys are saying and it sounds like most of you are still in pain. I thought all the meds was supposed to help all that.
Can my pain get worst even though I'm on med and increase more often?
The rheum doc act like I should know all the answers. All he said if you don't take the meds you will be crippled.
I will be out of insurance at the end of Dec. because they let alot of people go at the hospital because of cenuse. I can pick up cobra but it is like 380 a month.
Please respond with any input. By the way I can not spell.
Hi Barb,
I was diagnosed in June I think.I'm still trying to figure out the right medications because so many make me sick. The nsaids all bother my tummy and the dmards (disease modifying) that I've tried haven't been working. I'm in alot of pain,mostly my hands and wrists and my feet. I can't work because of this.
It's very discouraging and frustrating. I just want to be out of pain. This process of finding the right medications can take a long time. It can take months before seeing the results of the disease modifying drugs. I'm trying to be patient but there are times when I lose it and just break down and cry. In order to get through the day I tell myself that it will get better. It HAS to get better.
Hang in there and read the posts often. There is alot of encourgement to be found here and alot of laughter too
miles
Hi 1newbarb. RA is a confusing thing!
I don't know if it helps much to get input from another newbie. My experience is limited. But I've read a mountain of stuff trying to figure what's ahead (after I stopped reading it just to try to find something else this could be). Somebody suggested "Arthritis for Dummies." Sounds like a good alternative to the mountain I waded through.
Docs don't seem to be real quick to diagnose RA, even when it seems the most likely diagnosis. Still, if you really feel like the diagnosis doesn't fit you should try to get another opinion. Too much unnecessary mental anguish to feel like you've had a diagnosis and treatments forced on you inappropriately!
Does your PCP agree with your RA that the diagnosis fits? Could he/she help you get in to see another doc for a second opinon before you're out of insurance, as you say? (I sure hope you can keep it up through cobra. RA without insurance is pretty scary, as others on this board have described.)
Being pain-free with RA seems to be the exception, though not an impossibility. I've been dealing with it just about three months, and I'm just starting the real RA drugs. A round of steroids and switching pain from ibuprofen to celebrex both helped a bunch. But still there's not a day, not a minute, that's pain free, and some days it's well and truly bad.
I've learned that chronic pain is sometimes not as awful a thing as it sounds. Somebody described chronic lower-grade pain as background noise, and I'm learning that it's true.
You know how when you grieve a big loss, at first the pain seems unbearable. Eventually it gets to bearable but still rotten. Finally it fades to the background. The loss is always there, and sometimes it jumps up to grab you again fresh. Then it fades back again and gives you room to continue your life. That's how I'm thinking about chronic mild-moderate pain. I think that's what we hope for with RA. Anything even better seems to be considered an awesome gift.
But at some point chronic pain is just plain suffering, as you know from your accident!
That's what all the RA treatment seems to be about. Keeping joint damage down, and keeping pain below the suffering level as much or as often as possible. People with more experience will correct me if I'm wrong.
I think we can live a good life, if not ideal, with chronic discomfort and tolerable pain. Living a good life with long-term suffering is something I don't know how to do yet. Maybe I won't have to learn. Maybe you won't have to learn. I really hope not.
I'm still coming to terms myself with the idea that this thing just can't be fixed, that there's a good possibility the pain and troubles with functioning will be with me every day the rest of my life, that these may be the good old days. This is possibly the best I'll ever be. I've never been in this position before, and maybe you haven't either.
I've faced fairly serious things that were treatable, even when they were long term or the treatment wasn't a good deal. Like your bad pain from the accident that eventually was treated. You had pain free years at last. And it's totally, outrageously unfair that after all that work to recover and regain your strength, suddenly you're faced with something else. And now it's something that you can't get well from. At least I'm guessing that's how you feel, because that's the boat I happen to be in.
As to your specific questions, yes, it appears most of us can expect to get worse over time despite the meds. I think the hope is that with the meds we slow things down, make as many good days and months as years as we can, keep as many options in our lives open to us as we can. And yes, apparently most people who had RA before the new drugs became available were/are crippled because of the lack of treatment.
We're supposed to be grateful that our RA comes at a time when we have these new treatments. And I am grateful. But not rolling in the aisles grateful, even though maybe I should be. The treatments don't cure, they're scary, and for some people they only help a little instead of a lot, or a short time instead of a long time. But apparently they buy most people time, and maybe one day they will also cure us, or someone.
People on this board seem to run the gamut from long-term severe suffering, perhaps complicated by things other than RA, to very little suffering at this point. It's so impossible to say how you, or I, or any of us will be in a few months or many years, despite how bad or how good we have it today. I figure there must be a 12-step program out there somewhere for chronic diseases--one that preaches one-day-at-a-time and you-can't-do-this-alone.
Good luck getting the information you need to know for yourself what is wrong with you and what you need to do for it. You need to have confidence that you know what you're facing and that you're taking the right care of yourself. With that, you can do all the rest.
Yes I know they have the right dx.
I'm sorry to hear you are in pain every day. I guess I'm luck at least for now. These people that has had this for a long time are real troopers it is good thing they have a site like this to come to and talk to other people. I know it has helped me just in the few days I have used it.
I had to come to terms with my head injury that I would never be the same. I have problems in the frontal lobe area. I went from supervisor to a MST at a hospital. about a 30,000 cut in pay. But at least I was able to find a job. It was hard to find a job with my disabilities and now this on top.
I couldn't do it with out GOD.
I'm sorry for wining. I'm a talker so if any one see me on here drop me a line.
Well, I think I was in your situation 2 years ago. It started with wrist pain for me as well. I thought I had carpel tunnel. It would come and go. Then it started spreading (ie sholders, knees, fingers....all at different times). I went to my gen. physican and she called back and left me a phone message, saying it looked like I had lupus. Well, I was shocked and appauled that a DR. would tell me I had some crazy life threatening disease on my cell phone message.
Anyways, it took a year to diagnosis RA. I found a great Rummy, but it still didnt help. I thought they were wrong (partly due to the coming and going of symptoms and the fact that MY RA does not occur symetrically). I DID GET A SECOND OPINION! I suggest you do the same. I just needed another rummy to look over my blood work info and tell me the same thing, which he did. I now accept I have this, and accept the fact that I have to be on meds. Once you get the right med combo, you do feel better.
I am functioning very well now. My sed rate goes up and down from 13 to 22....but at my worst it was 47. I work, I play, I have a good productive life right now. The difference I have in my life is that I know tomorrow I may not feel so good, and I have to accept that daily and make it through as best as possible.
I do know its important to control it as soon as possible, which is hard to do when we think they might be wrong. I think the damage occurs within the 1st 2 years. Some of the new meds, are suppose to not only control the symptoms, but keep the RA from getting worse, so we will see. I think we are all guinie pigs!! LOL
It good that u are seeking out support, I think thats one of the hardest parts (it was for me). I felt all alone and now atleast I know Im not.