New to RA

[Guest guest]

Hi Folks,

I have been recently diagnosed with RA (within the last 6 weeks) and

am still trying to come to terms with the whole thing. From what I

have read here and other places, I seem to have been lucky with my

Rheumatologist. She seems to be on top of everything I've read

about on this list and then some. I have a good friend who is an

internist, and though we live on opposite sides of the U.S., I can

call and run things past her. She also thinks my rheumatologist is

doing everything she should be. I also like her, which I think

counts for a lot.

At this point, I am on 15mg of prednisone a day, Diclofenac, Nexium

(because the diclofenac, like most NSAIDS, bothers my stomach)

methotrexate, folic acid, and just finished a course of high dose

vitamin D, because I was deficient in that, and calcium.(which I

took even before this all started) I tried Plaquinel, but had such

bad diarrhea and bloating that I had to stop. We tried to start

tapering the prednisone, but I immediately got much worse again, so

now she wants me to wait till I've been on the Mtx a month before

starting to taper again. (I've only had two doses of the Mtx so far)

I've also got Tramodol to take for the pain, but am trying to use

that only at night, because it totally gorps me out so that I'm

useless if I take it during the day.

I am also in PT for bursitis in my shoulders, and OT for " range of

motion and joint protection " for my hands/wrists. So far, besides

my hands wrists and shoulders, I've had problems with my feet, knees

and trochanter bursars(the worst). At one point I developed

tenosynovitis in one hand and it curled up so that I couldn't open

it. (it unseized after being injected with cortisone)

I guess main question is one I haven't yet seen addressed either in

the books I've read, or on this web site. All that I've read says

that people with RA should exercize regularly. It also says that

you shouldn't do things that hurt. Well, right now, even though

it's MUCH better with the prednisone, and hopefully the Mtx will

take over soon, often I don't have to do ANYTHING and I still hurt.

I'm also totally exhausted about half the time. (some days I feel

fine)

I have always been a very active person. I ride horses

competitively, which means riding 1-2 horses 6 days per week. I do

the barn work on our farm daily, hike regularly, (day hike mountain

climbing) and ski often in the winter. I am 51 and barring some time

off here and there for child birth and the occasional injury, have

maintained that level of activity all my adult life.

I look at the exercize programs suggested for people with RA that

are supposed to be strengthening programs, and they are a HUGE step

down from where I am physically at this point in time. They

wouldn't even come close to MAINTAINING my level of fitness, let

alone improve it.

On the one hand, I keep hearing that RA is pretty managable these

days, and people can lead pretty normal lives. But the lives I hear

about are not _MY_ " normal life " . There are certainly things that I

can (and already have) cut down to try to take it easier. Living in

the north east, there hasn't been much hiking since this all started

to get bad anyway.<g>

I had to skip our family ski trip in January, because my shoulders

had totally frozen up at that point. (that was when the doc put me

on the prednisone, as well as injecting the worse shoulder) Last

Tuesday, since I'd felt pretty good for several days, and my kids

were begging me to take them skiing, we went to a near-by mountain

for the day. I figured I'd take it easy, and take lots of breaks.

BIG mistake. First, even doing what I would have always

considered " warm-up " terrain, on slopes well within my ability, I

just couldn't stay on my feet. I don't even understand why, but I

just kept falling, over and over again. I didn't hurt myself when I

fell, but I couldn't ski!!! From that first run on, I stayed

strictly on the beginner terrain, and even then was careful to take

frequent rest breaks inside, whether I felt like I needed them at

the time or not. I'm still paying for it.

Skiing is something I am willing to give up if I have to. I love

it, but I can do without it. The horses are different though. I've

always thought I would be riding until I as so old they needed a

crane to hoist me up into the saddle.<g>

When things were at their worst, I couldn't possibly have done barn

work. But fortunately, my show horse boards at an indoor ring for

the winter, and my boarder moved her horses to a different farm in

the fall. SO it just happened that our barn was empty for the

winter for the first time in 17 years.

When I started having what I now know is RA symptoms, I was able to

find someone else to keep my show horse going on days I couldn't

ride. But he is slated to come back home April 1. We can't keep

him indoors year-round, because it is MUCH more expensive than

keeping him at home. (besides the fact that he is a family pet, and

we all miss him when he's gone) I had been planning to get a second

riding horse this spring, to keep my guy company since we have some

extra stall space since a boarder left. Now I don't know what to do

or what to expect.

Are there people who are athletic before they develop RA and can

continue their sports once they get the RA under control? I can't

imagine a life without horses. I have ridden since I was a kid. my

longest time NOT riding has been through my two kids' complicated

pregnancies. I can live with the idea of losing a show season while

we get my RA under control. I'm not sure if I can live with the

idea of giving up riding altogether. Even the idea of it makes me

want to start crying. I'd rather cut off my right hand.

Sorry if I sound like a cry baby, when it is clear that there are

many people here in much worse shape than I am, at least at this

point. But I'm hoping there are people here who can at least help

me put things in perspective.

Thanks in advance,