exercise

[cjhnsn29]

I hear everyone saying exercise and working out will help, I don't know about anyone else but I don't have the energy to do so. It might because I don't breath well. I am just drained. Does anyone else have this problem with there WG?

[me2]

Hi cj,
I have had lots of trouble with fatigue and lack of energy. Not breathing well is a double whammy. Quite some time ago I was talking with Al on the Forum here and I ended up ranting about the doctors not taking my fatigue seriously. Drz recently brought it to my attention and I got quite a laugh- except its not really funny. I am doing better now than I was at the time of the rant but I still battle with fatigue even though my breathing is just fine. I hope your energy improves soon - it certainly could. I also do everything I can to eat an exceptional diet and avoid things that are not good for me. It is not THE answer , but it helps. Here is the rant for your amusement (except its not funny) :

Al
I tell them but they don't LISTEN. They hear but they don't understand.
I have been telling my doc about how debilitating the fatigue is and all he does is give me a blank look - until my last visit where he gave me some sage advice. "You should exercise 20 minutes a day"

If I could exercise 20 minutes a day and still have any energy left over I wouldn't be complaining about fatigue. I have to save my energy to do "20 minutes of laundry" or "20 minutes of housecleaning". Most days I don't even have that.
This pencil necked , noodle armed choir boy (I'm stealing that line from the Simpsons) couldn't last 20 minutes doing the heavy physical work I did for most of my life. Like stocking cabinets in new buildings up several flights of stairs. Digging ditches by hand around high voltage lines. Cutting my years worth of fire wood every year.

For recreation I did mountain climbing - real mountains (the Olympics here in Washington state). To the top and back home in one day. Med-boy wouldn't have lasted 15 minutes trying to keep up with me on the trail and he treats me like I'm some fat lazy slob that doesn't know enough to exercise.
Ok, I'm mad enough now I still think I could take him on a 20 minute challenge. Problem is , I would be out of commission for several days and he wouldn't. Do you think he knows that?

[cjhnsn29]

Hey me 2,
I am glad I am not the only one with this problem. (No offense not wishing on you). Well I believe my Dr's understand now that on top of this WG crap, I became anemic well hot damn think I got through when they had to give me 2 pints of blood. (No idea why I am drained) do you have any idea haha! I know I can eat better than I do. They only reason why I know that is I lost 41pds already. I try to stay positive and not complain and everyone always says, I don't think I could handle it like you. You are the most cheerful, happy person I know. Well what choice we have.

My biggest upset is that I worked 3 jobs when I was younger and put my self through college all on my own and now can't work anymore per the Dr's. It's aggravating when my 73 yr old mother does circles around me... Grrrr. Now he would know it (smile) sometime j/k..thx for the giggles. CJ.

[me2]

Hi cj,
I'm glad you were able to chuckle a bit- sometimes its all we can do. I too try and keep a very positive attitude and find it very frustrating that I can't work like I used to , or like I want to. Still, don't loose hope. I'm doing better now than I have for most of the past 14 years. Who would have thought that? I think the regular Rituxan treatments are what really turned things around for me. It has been slow though.

I had a friend who was anemic and she was just wiped out. I hope that is getting under control for you as well. And congratulations on loosing that much weight!! I'm still struggeling with the battle of the bulge
after all these years of being on prednisone and I'm happy to report that I am making good progress.

[cjhnsn29]

Me2

I am so happy u r making good progressive. I just started to get tapered off the Prednisone and was put on methrotrextate and it seems to work on my SED rate at least. When they first checked it my SED was 107 and we started the methrotrextate and it is lower than it has ever been its 87 good for me. I know it's supposed to be 0-20 . I'm getting there lol. So how long you been not able to work?

[pwc51]

By the time I was diagnosed I could not climb a flight of stairs without getting breathless. Two months earlier I had been climbing mountains and riding my mountain bike over the hills!
My rheumy said exercise was OK but 'do not exert yourself' - a tricky definition but one measure I have heard is that you should be able to continue a conversation whilst doing your exercise.
Once treatment started I began walking - initially 15 minutes per day but slowly increased this over 3 months as I improved. I can now walk for a couple of hours over the hills before it becomes uncomfortable.

[cjhnsn29]

PWC,

I hope I can gradually increase my energy levels. I am glad that things are going good for you. It's not like you use to do but it's better than nothing thats for sure. This is not easy having WG. But its great to hear some POSSITVE out comes like you.

[annekat]

PWC,

I hope I can gradually increase my energy levels. I am glad that things are going good for you. It's not like you use to do but it's better than nothing thats for sure. This is not easy having WG. But its great to hear some POSSITVE out comes like you.

I think we all go through this fatigue thing. It just takes time for your body to recover and recondition itself to being close to its former energy levels. I've been on treatment 3.5 years, have not been declared in remission, but just lately have felt MUCH more able to do physically demanding things without getting out of breath or overly fatigued. There is still the issue that I will feel it later in the day, I will be tired and ready for bed sooner or will need to take a little nap. All of this is normal for a Weggie.

[cjhnsn29]

Anne,

Thanks for answering back. I believe everyone has pretty much the same problems. I have a lot of problems sleeping due to the pain in my face area. As I get to talk more to different WG people I feel better knowing that I am normal or somewhat haha! I have a lot of understanding family and friends but of course you have those ones that don't understand. I hope it gets better. I have to give it time I am sure since I just got out of hospital.

Thx again
C.J

[brew22]

A friend took me to the local heath club for their water aerobics for arthritis .. I could hardly make the walk to get there ... Now I go on my own and love it .. the water is so freeing and it makes moving my body easy . My breathing and endurance have improved..

Also does anyone know if wegs peeps should get the flu shot???