Hi heather, I know how you feel. All of us do. I've always been very big on exercize. I also spent most of my childhood on a farm, so i'm not afraid of hard work. But....Now I find myself not able to do the things I once was able to do. It's a hard thing to face! I have a treadmill and a bicycle and everyone is always telling me I need to get out there and walk!! I'm so tired of that! first of all, I love to exercise, but just can't any more. I would love to go bike rideing and long or short walks! I even have a hard time on the treadmill.
My ashma has gotten worse, my knees are in bad shape, my hip is going out on me and i'm told by my foot doctor ,i need surgery. That is on top of a bad back and carpul-tunnel in both hands. Am I lazy? No, i'm not!! Never have been and never will be!!
I'm not wollowing in my pain either! My point is when you have a disease like lupus , you can't do the things you normally would do to lose weight. I congradulate the ones who still try to do that. But some of us have come to the point that we just.......Can't.
we still need to watch what we eat and move around as much as posible. I'm no expert on what lupus patients should eat, but it sure would be nice to know what foods we should avoid. Because of flare ups.
Sorry, I guess I needed to vent! I now weigh more than i've ever weighed before, and a friend, made a coment to me last evening about getting out and walking more. He didn't mean to offend me , but he did, and I let him know how I felt!
I'm going to print out for him the info on lupus.
Thanks for* listening*
sharon

Well I have been really concerned about how diet can affect this "challenge". I don't call it a disease or ailment. I try to think of this as my personal challenge. Sometimes it gets me.

I have been reading medical journals, etc. (i was a pre-med student when I found out that I had lupus. With the suppression medication I could not make rounds or even take the hep vaccine because my immune system could not have handled it.)

anyway, from what I have been reading most advocate a low protein and low fat diet. Well rounded nutritionally with calcium supplements as needed. I am still wading through journals trying to figure it all out, but if anyone has something that works for them I would be happy to hear about it.

As for exercise, exhausting yes, but as soon as this flare up is over I will return to aqua therapy. (swimming and the hot-tub).

Also my life partner took the time to learn a lot of therapeutic massage techniques. He has been a life-saver. Drink lots of water when you do it, but I cannot begin to express how much help for stress relief and comfort that deep tissue massage is.

Regardless...You *will* gain weight on moderate to high amounts of steroids.

I have a friend who is a transplant nurse for kids. These kids are eating nothing (on iv) and still gain weight because they are on steroids.

After you get off the steroids, watch what you eat and exercise...The only way to *really* lose weight and keep it off.

Hugs,
ladybrannon

Hi all:

i read this thread and felt a need to post.....

Not everyone gains weight on steroids, however it does change the way we process foods....And the cravings...Hmmm

the idea when on steroid treatments is to increase fiber, but not to excess...Change sweets for carrots, exchange soda or tea with water...

I have found the best diet to be on is one that changes your eating patterns while satisfying the inner you....Weight watchers works, it is probably the healthiest way to diet and not be too unhealthy.

Exercise, now there is a tough topic, I used to be very active, aerobics, weight training, scuba, biking, rollerblading....Now I am lucky if I can roll out of bed some mornings....

I worked with a personal trainer/therapist, we started with stretches and then progressed to mild weights (low weight and low reps), since then I am finding that I am exhausted right after the workout....Shaking and twitching...Needful of a nap, however, the next day I have more energy than on the day after no exercise.

Any exercise...Climbing stairs rather then taking the elevator, walking around the building at lunch, sitting and standing(up/down) for 5 minutes a day may be hard at first but will get easier...The more you do the better you may feel....Just remember you will never get skinny or a hard body this way, however is that really our goal? Don't we just to have more energy and feel better...And if we lost a few pound as a result...Cool

do what you can and don't punish yourself for what you can't, just take a small step back so that you eventually take another step forward.

Hate to be argumentative...But *most* people do gain weight on steroids. Want proof? Go to a transplant ward. They are fed through tubes, but are on steroids. These people gain 40 pounds. Steroids makes you system "collect" fat.

As I said, on high dose steroids you *will* gain weight. High dose steroids being 20mg or higher of prednisone.

I can show you the documentation if you would like, but I assure you I *am* correct.

Ladybrannon

I am sorry if I "got your goose" it was not my intention.....I did not say you will not gain weight, I just said that not everyone will gain weight.

I see that the moderators seem to by highly sensitive to opinions different from their own therefore I will no longer voice my opinion on this site.

Again

Sam43...I am very sorry that you thought I was being rude to you. I was simply trying to make sure that you understood that a lot of us on this site are not on small doses of prednisone and we do gain weight! Serious amounts...Serious enough to cause other health problems.

Again, I am terribly sorry. I am also sorry to anyone else that thought I was rude. I was simply trying to make sure that the facts were clearly stated.

A very sorry,
ladybrannon

Ok so far... This is what I have found about the best "diet" (this is not diet as in weight loss) these are the most recommended diet points I have found. The things that it looks like "we" should eat and not eat.

Most recommendations point to a vegetable rich, low animal protein diet. Alfalfa sprouts are a no no. Alot of other things are "in debate".

I am going to work with a couple of dietians that I went to school with and the ones that work with my health care provider to try to wade through this great abundance of information. If any one is interested let me know.

I don't know if it will help any of us, but I am a true believer in information is our best tool.

Hlp:

i think that this is a wonderful idea.

Any information you that you would share with us would be marvelous.

Perhaps we can start a thread for diet ideas, recipies and suggestions. What do you think?

Thanks - stephanie

If it would help and people are interested, sure.

I'm very interested please let me know what you find out. Thanks......Sharon

hi all, i'm new here, i've had lupus for 4 years and it seems to be getting worse. I need to know if any of you are going to a specialist or just a regular doctor. I had gained alot of weight also but i've been doing jorge cruise 8 minutes in the morning routine and it really helps me to move the rest of the day. Lately i've been getting very light headed. I've had to go to the e.R. 3 times in oct. I woke up one morning with lumps on my face. I was given antibiotics and was told it was a flare up. If anyone knows of a real good Dr. (i'm near spokane and seattle). Thanks.

For heather.. Who posted she is suffering from carpal tunnel syndrome.
I had that for years and ignored it due to my lupus. I was afraid to have surgery for fear it would trigger my immune system into a bad relapse.
Well, when my left hand became totally numb.. I broke down and had it done. I had it done at an out patient facility that specializes it it. I was only there for three hous.. The surgery itself only took 15 minutes! The doc told me after it was over that I had a very bad case and he was glad I had it done or it could have caused permanent damage very soon.
I wore a splint for only 2 weeks. It was a little painful for a while, but nothing horrible. But from the day of surgery I never had another numb feeling in my hand! It is totally gone and great!
Now I am trying to find a time to have the other one done.
Since we can't solve many of our pain problems, if you are dealing with carpal tunnel.. Do yourself a favor and have it surgically corrected.
You will be very glad you did.