Wegeners flaring when doing too much question??

[elephant]

I noticed when I exercise, that my sinuses get worse more stuffy and runny. I get the feeling that this means my Wegeners is still active, do you think I am overacting? I see my Wegeners specialist in June, my local Rhuemy in a few weeks. Thoughts?

[Sangye]

Was it happening before (when you were certain you weren't flaring) at the same level of exercise?

No matter what level of Wegs activity I have, I've always found that overexerting will cause symptoms to "break through" the meds. That could be because I've always had active Wegs, though.

[elephant]

The thing is I don't exercise all the time because of circumstances ( surgeries, getting over a infection, ect) so when I do exercise I noticed more sinus issue's. I seem to forget that every time I exercise my sinuses are worse, when I take a nap my sinuses are better.
I am wondering if I am in the same boat as you Sangye....Wegener's being active. This is a question for my Specialist to answer.

[Sangye]

I'll be interested to know what she says. Can you keep a journal of your symptoms and activity level? It'll help both of you see what's really going on.

[elephant]

Thanks Sangye, I am going to do that. I am grateful that I have no blood spooing out of my nose or lungs, or being short of breath, joint /swelling or pain...ect

[calfaro443]

I noticed when I exercise, that my sinuses get worse more stuffy and runny. I get the feeling that this means my Wegeners is still active, do you think I am overacting? I see my Wegeners specialist in June, my local Rhuemy in a few weeks. Thoughts?

The same thing happens to me. All I do is walk for a good 15 min.a day and I pay for it "till my meds are due the next day. The my stomach feels sore for days. It suxs.

[elephant]

I didn't exercise yesterday and I have less sinus drainage. When I nap my sinus are better. Geez....all Wegener's wants us to do is lay like broccoli. :)

[Sangye]

LOL--that's for sure. Elephant, try lowering the intensity of your exercise and see what happens. Go for time, not speed or intensity.

[TBulger]

Lowering intensity has helped me. I used to try and take long walks in the park but found that it really wore me out. Now I take short walks from the couch to the refrigerator and I'm not nearly as tired.

I find that the amount of exercise that my body will tolerate keeps fluctuating.

[calfaro443]

Are we doomed or what!LOL. I use to excersise for atleast 30 min. when my WG was under control, and now like TBulger said "from the couch to the fridge". Everyone keeps telling me I'll feel better when I lose weight. REALLY! I can't excersise 'cause it upsets MR. Weggie and I can't control my eating 'cause steroids make me crave chocolate cake, iced coffee, fried chicken and if I don't get it I want to bite someone's head off!

[elephant]

Calfaro, don't deprive yourself or feel guilty about eating chocolate cake. Eating one piece a day helps curb those" I got to have my sweets!" I think what I am going to do is nap everyday. I don't know why Wegeners does not like it when we exercise...is it the fire (hot) thing? I really wish I could figure out a cure for this disease!
So lets all do a experiment and take a 30 -60 minute nap a day and exercise ( yoga, walk, bike ride..ect) 30-45 minutes and write down how we feel. I don't exercise everyday, so the day that I am going to exercise I will nap.

[Sangye]

If you exercise in the middle of the day--especially when it's hot-- you'll definitely increase the fire element. That's true for healthy people, too. I see people running at noon on a hot summer day and think "I wouldn't want to be around them in an hour or so-- they're gonna be cranky as heck." Too much fire makes you irritable. It also makes for an unhappy liver and digestion problems (among other things!).

I haven't been able to get in the pool for months-- since December. I'm just starting to feel strong enough again. I did notice that I had to keep the intensity WAY lower than I wanted to or I'd feel lousy within an hour. Try exercising at a ridiculously low intensity and stop while you still feel as strong as you did the first minute (ie, leave a lot of reserves).

[elephant]

Thanks Sangye, I am actually going to slow down. I guess I was trying to catch up for the lack of exericise in the last two years. Crazy! I know! I know better, I guess it's the fight in me...that Wegeners is not going to control my life!!

[Sangye]

Elephant, you've got to slow down, especially since you're been on pred a long time. You know that your adrenals don't produce their own hormones yet, but you might not realize how much exercise demands of the adrenal glands. If you demand too much from them, it's the same as taking too little pred--the Wegs will micro-flare. Your body right now needs about 10mg pred to keep the Wegs in check. Overexerting uses more than that and you have no way to get it.

Particularly since you're trying to taper, you've got to be sure not to put your body into a corticosteroid deficit. If you do that on a regular basis, you might be guaranteeing that you can't taper the pred. "Slowly but surely wins the race."

Does this make sense? It does in my head! :D

[elephant]

Sangye that makes sense, so what your saying once I am off the prednisone I can exercise more? I think that is what's happening micro flare after exercise ( more stuffy, runny nose and ear starts to clog up). It is so annoying!!!!! So glad I am seeing my Wegeners specialist mid June. I noticed exercise helps me feel better mentally and physically except the sinuses does not like it!

[Sangye]

Once you're off pred you can do anything you want. :D

[pberggren1]

Don't overdo it though. Slowly get back into moderate exercise.

[Sangye]

LOL-- I was kidding! :D

[Natalie]

Elephant, you've got to slow down, especially since you're been on pred a long time. You know that your adrenals don't produce their own hormones yet, but you might not realize how much exercise demands of the adrenal glands. If you demand too much from them, it's the same as taking too little pred--the Wegs will micro-flare. Your body right now needs about 10mg pred to keep the Wegs in check. Overexerting uses more than that and you have no way to get it.

Particularly since you're trying to taper, you've got to be sure not to put your body into a corticosteroid deficit. If you do that on a regular basis, you might be guaranteeing that you can't taper the pred. "Slowly but surely wins the race."

Does this make sense? It does in my head! :D I have never stopped my normal life because of this disease , I got sick but still went to work every day , Till I was hospitalized , out in a week back to work in two high as a kite coulnt sleep and wanted to take on the world I felt so good. I must have a high pain threash hold as I lived on pain pills to get me to work and through the bad times but never once did I stop never once was I told to SLOW DOWN . All I knew was I needed these pills to get ride of this disease you will be right in a few yrs . After 13 yrs of not stopping for the disease well Im tired go figure ! but starting to learn that I am aloud to get tired , thats its normal for weggies . I would like to ask some questions about this because I Need to slow down at work . Cut back some hours .. I have to go now get to the doctors appointment but will be back tonight . :) have a good day all . NAt

[Doug]

Natalie- Believe it when I say I felt much better when I retired because I determined what I could and would do, not the contingencies of the job. The job, mostly, was data analysis, some teaching, meetings attendance, but included one BIG "etc.": I evaluated returned hose to determine cause of failure and whether or not the customer was due credit. One of the hoses, a LPG refueling hose, was a 4 inch diameter monster (16cm- if I did my mental math correctly enough), and weighed close to 100 lbs. (45.5kg) in the typical cut length. The massive fittings alone weighed a lot. It took quite a bit more energy than I typically had to manhandle these returned hoses to a cutoff saw to cut out a section of hose where it failed (for evaluation), and I'd be drenched in sweat for the effort. Part of the time I was doing this, I was getting around with a cane. My employer was very good about making it possible for me to work, but I think they were as happy as I when I took them up on retirement after nearly 36 years with the company. I was a few weeks short of 61, which meant I was unable to draw on Social Security, but I did have funds I could and did live on until just recently. Just recently, my actual retirement accounts have taken over my money needs. I won't have as much money available for retirement because I took early retirement, but I'm not hurting. Good for me!

[Lola]

Natalie, I have been a hard worker like you are...sickness and health. Aug 09 I finally realized I could not tolerate fulltime. The group I work for was good enough to allow me to work 1/2 time with a bit of it being from home.

Still, I am planning to retire early with July 9, 2010 my last day of work. I have to, for my own sake. I don't know what my message is, other than to take good care of yourself and cut back if you can possibly afford it.

Doug, it's good to hear that you felt better after retiring, and that you can afford the retirement. I think my employers were just as happy to hear that I will be retiring as yours probably were. Good for you - Good for me!

[elephant]

I say good for Doug and Natalie, I had to quit my jobs because I was thinking I could handle it and my health was spiraling out of control. So I chose my health first, and mabey when I am in remission I might go back to work. I know my past employees are screaming from the rooftops," Yahoo!" :)

[Natalie]

Natalie- Believe it when I say I felt much better when I retired because I determined what I could and would do, not the contingencies of the job. The job, mostly, was data analysis, some teaching, meetings attendance, but included one BIG "etc.": I evaluated returned hose to determine cause of failure and whether or not the customer was due credit. One of the hoses, a LPG refueling hose, was a 4 inch diameter monster (16cm- if I did my mental math correctly enough), and weighed close to 100 lbs. (45.5kg) in the typical cut length. The massive fittings alone weighed a lot. It took quite a bit more energy than I typically had to manhandle these returned hoses to a cutoff saw to cut out a section of hose where it failed (for evaluation), and I'd be drenched in sweat for the effort. Part of the time I was doing this, I was getting around with a cane. My employer was very good about making it possible for me to work, but I think they were as happy as I when I took them up on retirement after nearly 36 years with the company. I was a few weeks short of 61, which meant I was unable to draw on Social Security, but I did have funds I could and did live on until just recently. Just recently, my actual retirement accounts have taken over my money needs. I won't have as much money available for retirement because I took early retirement, but I'm not hurting. Good for me! Hio doug that was some very heavey lifting you were doing gee !no wonder you had to use a cane . 36 yrs is a big stint too. :O My last employer I was with for 11 yrs I was working here when I go sick with wegeners and for a long time I blamed them for making me sick , It was a chicken abattoir with alot of bugs I used to work in the kill area so all day wascovered in blood and guts breathing in chlorine and crap from the vats .. but I couldnt pin that on them but I had to point my anger towards some one :) I had to leave these guys when I got sick again and lost my sight , this was extreamally hard for me to leave my future was uncertain. but 6 months off and delt with my eye never being able see again through it , takin on another new normal , I was ready to work again :) started off slow but was pushed into a managment position what I tryed to explain to them NO its not for me Just because I can do the job dosent mean should they couldnt comprehend this. A fear of leaving them In the lurch like my last job , but I did warn them this time so I guess they are just going to have to deal with it .
See I need to work and I can work just not 10 hr nights back to back , not enough down time and I am suffering now . so im anger with my self for letting them walk all over me and angery at them for pushing me making me feel like if I didnt take the position I would lose my job .. Gee these big companys are ( Nasty work incerted here)!!!...

[Natalie]

Natalie, I have been a hard worker like you are...sickness and health. Aug 09 I finally realized I could not tolerate fulltime. The group I work for was good enough to allow me to work 1/2 time with a bit of it being from home.

Still, I am planning to retire early with July 9, 2010 my last day of work. I have to, for my own sake. I don't know what my message is, other than to take good care of yourself and cut back if you can possibly afford it.

Doug, it's good to hear that you felt better after retiring, and that you can afford the retirement. I think my employers were just as happy to hear that I will be retiring as yours probably were. Good for you - Good for me! thats it hey Lola got to do what right for ME not them ME mE mE ME , It is in my bloody to always put others before me And I found this very hard to say NO me first , but I am learning , because if I dont no one will . :)

[Sangye]

Natalie, I echo the others when they say please take care of yourself. You definitely can't keep pushing when you have Wegs. I'm worried that you work nights-- a bad idea for anyone, but really bad for someone with Wegs and on pred. Working at night causes chronically elevated cortisol-- strong correlation with cancer. Pred already messes up cortisol levels, so this is a bad combination.

[Natalie]

I say good for Doug and Natalie, I had to quit my jobs because I was thinking I could handle it and my health was spiraling out of control. So I chose my health first, and mabey when I am in remission I might go back to work. I know my past employees are screaming from the rooftops," Yahoo!" :) was this really hard for you to quite ? I dint deal with it really well at first I hate being the centre of attention especailly for the wrong reasons like health issues . everyone wanting know how you are but I couldnt deal with them couldnt deal with myself .

[elephant]

Yes Natalie, it was very hard for me to quit because I loved being a nurse.....but It really was not fair to me or my co-workers. So I play Nurse on this forum. :)
I probably won't go back to nursing, mabey something else. This disease is really full time for me and then taking care of a family and home ect....is enough!
I totally understand the "center of attention", I felt like everyone was like how do you feel today? " I feel like crap and know I am not well!" that's what I was thinking...

[Natalie]

Yes Natalie, it was very hard for me to quit because of loved being a nurse.....but It really was not fair to me or my co-workers. So I play Nurse on this forum. :)
I probably won't go back to nursing, mabey something else. This disease is really full time for me and then taking care of a family and home ect....is enough!
I totally understand the "center of attention", I felt like everyone was like how do you feel today? " I feel like crap and know I am not well!" that's what I was thinking... yep well your being a great nurse on here Ele keep it up :)

[Lola]

...It is in my bloody to always put others before me And I found this very hard to say NO me first... :)

Gosh, Natalie - with that attitude you'd make a great nurse. We seem to be too good at putting others first.

[elephant]

Natalie thanks for the compliment. Dido to what Lola said!