Rheumatoid Arthritis Support Group

why is it when you tell people that you have ra and that the exhaustion is horrible they say something like "you just need to get more exercise and be more active." so i am exhausted and i hurt like no other and yet i am supposed to feel like exercising. dont overdo it but get more exercise dont hurt your self but be more active i know you dont feel like it but you have to be get more exercise. how about i give you the worst flu you have ever had and add a bout of pnemonia on top of that and then tell you oh you are ok you just need more exercise and to be more active. if you arent better in a day or two we might think about giving you a script or something. i know that the dr. is doing the best he can but it is so frustrating when i am doing the best i can and i am struggling so much to hear just be more active

It seems like the solution is always get more excersise for all arthritis sufferers. We all know that we need to get more excersise but how is that supposed to happen when you can hardly move and hurt soo bad that even the thought of even the mildest types of excersise put you into a flare. I just don't understand how its supposed to make you feel better. Maybe if they would be more willing to give out scripts that help with the pain we could all get out and get more excersise I think its a little bit backwards in how they deal with that type of situation. Hope you feel better soon,

Alicia

When I first started physical therapy to help my hands I was thrown into a horrible flare. What did it was using a rubber band thingy. I would never had dreamed such an exercise could cause the pain I experienced for 4 days. But it did.

Later, when I went back the exercise was very gentle. No rubber bands things for awhile.

I was chair bound for a few years and learned to move my feet, legs, and hands alot while sitting. It really helped.

I agree that it is impossible to exercise when the pain is harsh. When I had physical therapy for a knee replacement I had to take pain meds at least 30 mins before beginning. The pain was awful but I pushed through because I knew I was working toward recovery. I cried everyday for a month...even with pain meds.

But this RA is different. My rheumy told me never to exercise when I am in a flare because I would be damaging my joints even more. Well, how was I suppose to exercise when it hurt tremendously trying? Or knowing it was not good for me while flaring. Heck, I was in flares far more than not. My doc called off aqua therapy because it harmed me more than helped me.

Come to think of it, if we did have enough pain med to exercise while flaring then we could actually harm ourselves. So maybe that is why we aren't given enough to do so. With the knee therapy I could have recieved pain injections so as to get me through the exercises. Hmmm...something to think about.

Still we need to do gentle stretches as much as possible.

Only a few days a month I didn't look sick. Most of the time you could look at me and know by the crippling body language and drawn face I was sick. Even on my good days there was always something in my eyes that told the truth.

When I was dxed with RA it hit hard and fast. Within weeks I looked like a different person.

jl, you describe how many RA sufferes feel. I know exactly what you are saying...I wish others could as well.

Hope you get to feeling better dear.

Oh Poooooot. I'm sorry but i am soooo sick of exercise, exercise, exercise. When i took physical therapy for my knees and ankles (osteo-arthritis) it is what made my wrists poof. I had hand and wrist problems before but they never associated it with RA. I do not tell them about the hips and shoulders and ribs. They suspect the elbows but i don't tell them.

I agree with Bits. Stretching has gotten me thru many a time. Without stretching, my back hurts. With it - i am like a cat. okay a feeble cat but stretchy back like a cat.

When an RA person decides to exercise - it is cause to rejoice. A call to arms. An inspiration or at least a cause for admiration. It is also usually sporadic. We do it when we can.

When a person who does not have RA yaps at us about exercise, it is only because they have read about RA or maybe not even that much. They don't know - they don't understand and they "think" they're being helpful.

I have a mini-trampolene i jump on because i've heard its good for avoiding lymphoma (i have sjogrens and problems). it helps my ankles - bothers my knees (not too much) and is hard on the hips. In general, i feel better with it. It is not for everyone. Some might benefit from sitting in a chair and trying to exercise what they can. Some do well walking - whatever you can do.

Please, dear, just do what you can and don't push too much. Beyond that, just take what the non-RA people advise about exercise with a grain of salt.

Here i go again - preaching to the choir.

Yes, people seem to think that if we exercise it will cure our RA....

How can we exercise when its painful just to sit down or get up, for me just going upstairs to my bedroom is an exercise that takes me longer then I would like it to....

Yes, I would love to pick up my old weights and do 3 sets of bicep curls and then the triceps...maybe some crunches, leg lifts, etc...I have tried many times and have caused more pain....thinking that "this time would be the time I would break through with getting better"

It still amazes me how people that are supposed to have our best interest at heart ever consider that for instance if someone has a sprained ankle or a broken arm, should they just exercise as if nothing is wrong?...Oh yes, do some bicep curls with a broken arm, and maybe some jumping jacks with the sprained ankle.....

Its hard enough for us to accept RA....and when others give us their miracle cure for our RA....its because maybe they are not hearing us.....

because there is no cure....just hopeful remission...

I rememeber discussing exercise with my rheumy. He said don't exercise while in a flare. I said I am almost always in a flare. What am I suppose to do? He said absolutely no exercise (besides gentle stretches) even if I never exercised.

I understand what he was telling me and was grateful he understood. Heck, how in the world do you exercise when you have each finger, your hands, and wrists in splints to keep them still? And feet wrapped up in warming booties becauase of severe pain. And your knees from 4"above and below are swelled up like ballons.

You don't.

The whole point of taking RA meds is to help us and hopefully put one in remission. Then...we can exercise. Until then, I agree to do what you can and don't feel one iota of guilt.

I was thrilled to be able to stretch. Most days that was all I could do and for some reason I felt like I moved a mountain. It gave me wonderful satisfaction.

You are stronger than you know. When you do a strtch it is more than most people hiking. In fact, you will find strength through this journey that will amaze you.

Poohy on the ones who don't understand. You do. And we here do.

hugs

Absolutely!Bah humbug to those who tell us exercise will cure us of our RA. I'm convinced it helps...WHEN YOU'RE ABLE TO DO IT. If you're in a flare, definitely do not do it. I joined a gym about two months ago.. started out great. My trainer swore he, along with the staff.. (gym is part of a hospital for Pete's sake) were WELL VERSED in how to deal with RA. Oh really? I hadn't exercised in years with weights (pre RA days), and this guy had me doing 3 sets of reps with 45-50lbs after a week on upper body, and 90lb leg presses. ARE YOU KIDDING ME?? I'm old and out of shape to start with, and have RA on top of it. Needless to say, my joints were hurting really badly, and you could even HEAR my shoulder "clunking" as I exercised. So here I am... still old and out of shape. LOL Oh well.

Karen!!! Seriously!!!! I'm no expert but i have piddled with fitness centers since i was um lemme see.... i was still in high school and i'm now 53. I'm convinced the heaviest weights we should deal with ever are 60 lbs. On days when my elbows snap - i stop working them. Otherwise, it becomes a problem for days. Same with the ankles. There are days i can use the elyptical machine and then there are days i can't pedal the bike even with no resistance. Also, with RA, if you're having a great day and feel like you could exercise forever - do much less than you feel like. Again - if you do too much, you pay badly later. There will always be days when its a complete workout to just go to the bathroom. Even if you workout regularly, an RA person should not workout longer than 45 minutes w/o a rest. Then, when you're reasonably certain you've not done any damage -- more can be done but not much.

I know what i typed is probably not be true for everyone but it is certainly true for me.

You know, it is bad enough that your average citizen is so clueless but for the professional to be that way is just - well - inexcusable.

I used to get on my staionary bike for 2 mins at a time 5 times a day. Or walk around my home (I should say shuffle) for 2 mins several times a day. Hey, that was big for me and I was proud of every one of those minutes. Sadly, it wasn't everyday I could do this but I did every chance I could.

Now, I am walking much more than that (no shuffling) and can ride my bike much longer. I still can't walk long distances but that is due to other health issues not realted to RA.

This is remission. Believe me, my body works alot like pre-RA days.

Please keep hope alive. Remission can come.

If there was one thing I could magically bring back into my RA life, it would be the gym....I also have a mini gym in my house basement....

It was like a religion to me.....working out made me feel great, and my body was toned and able to do so much...I enjoyed the challenge and also enjoyed running....

It took me a while to understand that my life had changed when RA was diagnosed..I used to try and try and try again...my end result was extreme pain and flaring....I used to think that I would prove everyone wrong, that I could break this RA by forcing the exercising....eventually I learned that I would not be the the very fit person of the past...

I wish I could open up the RA Institute which would hire only people with RA...and it would offer specialized spa treatments, specific exercise programs for RA only clients....and would be structured to accommodate all our needs....nutritionist would be on hand with a chef that prepared RA specific foods...

There would be a huge specialized therapy pool, with heated towels and the chairs surrounding the pool would be cushioned for our comfort....

The best thing is Insurance would pay for everything even our plane ticket if needed...and those with no Insurance that had RA would be coupled up with an insured person because their insurance would have a insure one get one free pass.....

Oh well, I can dream can't I?