Rheumatoid Arthritis Support Group

I've noticed what I'm sure a lot of you folks have noticed. RA should be named something else. When you mention to someone that you have RA they usually retort with something like, "yeah, my joints really bother me when it rains", or "I hear ya, there's days that my hips hurt like crazy." Now, I'm not putting those people down, it's just that everyone can identify with arthritis, and when RA is mentioned they only hear the A and not the R. My best friend has had RA since I've known him and that's been almost 40 years. I brought this up to him and told him that until I got RA I was of the same mindset. He said that indeed RA should have a different name. I won't repeat what he said. Let's just say blankety blanken RA.

Anyway, here's my report. My hands, especially the left, have been killing me. Every night I've been woken up with a hot spike being pounded through my left hand. It takes up to an hour to work out the pain. Drugs don't do a thing except make me feel worse the next morning. I've got to the Dr. and she put me back on Arava (it worked some in the past, but I switched to Methatrex. with not so good results) to go with the Humira. That was 2 weeks ago. Knock on wood, I'm still waking up with pain, but the spike has been reduced to a large nail, so hopefully the Arava is starting to work.

I'm finding out that people have a tendency to think that you are BS'ing them about your limitations. I'm a pretty big guy, 6'3" at 230 lbs. and it must seem odd that someone my size should shy away from physical things requiring use of the hands. Maybe they'd understand if they saw me on real bad days where I use two hands to open a door knob.

There is a positive side to RA though. Pain thresholds unrelated to RA have increased dramatically. I burned my arm on the grill this week, left a nasty mark, but the pain wasn't nearly as bad as the nighttime RA pain. Several months ago I would have been yelping all weekend, now it barely got my attention. I guess you've got to look at the bright side of everything.

hello, yes i agree it needs a better name...i too have had the same problem of people thinking oh..arthritis.i got that too..lol if they only knew the difference. i can relate to the pain you described, i've had that since May..but it's getting better now..on MTX and Enbrel so my pain is tolerable now vs being in tears and wishing to die to stop my pain. RA has taking my strength and mobility in my hands too..makes me mad..i have to ask my 11 yr granddaughter to open a jar ..etc...over the years i've learned a few small tricks to aid in some of my kitchen duties. hope you have a great day..Ann

Hey Navigate, boy do we know that one, I remember when I first started coming here last year that topic came up quite regularly ... they DEFINITELY need to take the Arthritis part off. People do not have a clue that it is an auto immune disease, that it is so damaging, extremely painful, potentially life threatening and can take years off your life.

Of course until I dealt with the constant pain for years and eventually found out what it was I had no clue either, although at the same point I never did just assume if other people had illnesses I knew what they were without asking or pretended to know what they were going through. Even having the same disease we all still have things that are more troublesome to them than others in the group, in large part we do have a lot in common and we can understand better what others are going through. Its a good thing to have, I think I would be the loneliest person in NY if I did have all of you.

Even seeing us on a bad day they wouldn't understand, I don't even think most people can fathom the kind of pain we feel. I know I didn't know it was possible.

I hope your pain improves soon!

maybe they should call it REPA, Rheumatiod Excruisiating Pain arthritis, lol, not that that would probably make much difference, but i think its hard for ppl to understand how hard it is when you never know day by day how you will do each day,and as for the hand thing, just ask how many ppl have got stuck in a restroom cos they couldnt open the door , lol, me included. I hope your pain improves

I absolutely agree RA is misnamed. As many of you mentioned people hear the word arthritis and stop at that. Even I, until I had it, thought it was more a severe form of OA.

I wish I had been right.

About 4 years ago, soon after dx, we went to the drive-in. I had to go to the bathroom and shuffled down to it. I knew the toilets were low but thought I could manuver it.

Well...I got down with some difficulty and realized as soon as I was sitting I would have a greaty difficulty in standing up.

I looked to my left...nothing to hold on to. I looked to my right...nothing to hold on to. Iknew I was in trouble.

I tried to stand but couldn't because of the extreme lowness of toilet. I tried holding flat handed against the walls. Too slippery. But even if walls had not been slippery I doubt hands would have had the strength to pull me up.

Finally, I called out for help.

How embarressing for someone to help me off toilet while my pants were around my ankles.

But...that is what happens when you get in such a situation with RA.

When Lupus is mentioned people tend to understand the illness it produces.They seem to understand a Lupus patient has good/bad days. But assume the good days come and go.

But when RA is mentioned it is simply thought of as arthritis. Then when an RA patient has a fairly good day they think all is well now...the patient is on the upswing. They never consider RA is a chronic, progressive AI disease.

In fact, few know RA is an AI disease. I didn't once upon a time.

So, yes, the name is very misleading.

Hugs

Post edited by: bits, at: 11/01/2011 03:27 PM

I agree with Bits so very very much.

And on another note.. I agree with you as well Navigate! I had two babies, over 24 hours of labor with each, with NO meds. Not so much as an advil. I broke my arm falling down the stairs and it took me 4 hours, 1 nap and a TON of swelling later to even realize that my arm hurt. RA definately ups the pain thresh hold. Sometimes a great thing!