Physical fitness for Weggies

[chrisTIn@]

Today I did a two hours bike-ride. This is the first time in months that I felt good enough to do such a physical excercise.
I did a trip in the countryside, near the city that I live in, and I enjoyed it very much.
I'm curious how my muscles will react.

Do you other Weggies practice some kind of physical training?
And how do your bodies respond?
That's what I would like to know...:rolleyes1:

[hilhoff]

Whenever i used to feel really good I would go out and either walk, try some sit ups, push ups, ride on a bike. normal exercise stuff.
but afterward i was usually unable to function 3-4 days after doing it. :/
I'm glad your able to get out and work out, as soon as them dang blood clots are gone I'll be doing the same thing.
:) hope all keeps moving forward.

[drz]

Today I did a two hours bike-ride. This is the first time in months that I felt good enough to do such a physical excercise.
I did a trip in the countryside, near the city that I live in, and I enjoyed it very much.
I'm curious how my muscles will react.

Do you other Weggies practice some kind of physical training?
And how do your bodies respond?
That's what I would like to know...:rolleyes1:

I recently started a program of walking on the tread mill to try build up muscle strength in my legs and my endurance. I started out at .6 mph (one Km) per hour and initially I could only go 1/8 mile or a couple hundred meters. Last time i was able to walk at 1.7 mph or 2 km hour and lasted 12 minutes for .35 mile. I can do this and keep my heart rate now at 70% of suggested red line maximum. If I walk slower I can walk longer but just going up a dozen steps will push my heart rate up 80-90% of max rate.

I find it hard to get appropriate guidance about exercise programs. Physical Therapy and occupational therapy were designed just to get me able to walk again and relearn the basic things like walking up some stairs and getting strong enough to get out of chair from a sitting position. The sports medicine trainers seem to think everyone is training for a marathon or some Olympic sport and are way too ambitious and strenuous for me. The best advice I got was to monitor my breathing and heart rate and oxygen levels and to try to keep the heart rate at 75% of suggested max and O2 levels in high 90s, usually 97-98 % for me. I plan to start working out on the weight machines next. I had to be careful about starting any exercise program because any over exertion when the Wegener's disease was active in the past would cause my lungs to start bleeding or leave me so exhausted I could not do any thing for a couple days. Yet, if you do nothing at all your muscles quickly deteriorate and it takes a while to regain any normal function again. I guess finding a proper balance in exercise is like the rest of our treatment for Wegener's disease, a lot of juggling and trial and error.

[Hammy8241]

Today I did a two hours bike-ride. This is the first time in months that I felt good enough to do such a physical excercise.
I did a trip in the countryside, near the city that I live in, and I enjoyed it very much.
I'm curious how my muscles will react.

Do you other Weggies practice some kind of physical training?
And how do your bodies respond?
That's what I would like to know...:rolleyes1:

Great work ChrisTIn. Hope you don't suffer adversly to the exercise.

With regard to re-commencing exercise, I found that I could only manage twice or three times a week as the next day, my body caught up with me and I'd just sit around feeling rough. As I started to get the WG under some sort of control, things improved to allow me to run (my exercise) every other day with the rest day being a slow day.

I only run when I/my body feels ok which has meant several starts and stops for me. Certainly move forward in small steps as doing too much will/can put you back and bring symptoms back that you may have thought to be in the past.

As a marathon runner in a former life, I am now so very much slower and if I can manage 5k (3 miles) twice a week, without reaction then I am really happy - does not always work!!

Best advice i can give is to listen to your body and STOP before your body starts talking to you!!

"plan to start working out on the weight machines next"
Drz. Take care with the weights as they can cause damage very easily. (Due to the pred!) I'm sure Sangye will coment further:biggrin1:

Slow and steady wins every time:flapper:

[coffeelover]

I do at least 20 minutes of a walk outside with dogs, or treadmill walk or indoor bike 6 days a week during these winter months. When the weather is nice I do a bit more. For example a walk in the am and a bike ride in the evening.
I always feel better when I get a chance to do a little bit of exercise. I figure, it cant hurt! I do take it easier than I used to though. But something is better than nothing.
LIsa (coffeelover)

[Jaha]

I just went to my Rheumy on Friday. She also dx me with Fibro Myalagia, she wants me to start moving and exercising if I can. After being immobile, for a year that's going to be very hard. But I think I'm going to start trying short walks. Good luck to all with their programs.
Jana

[elephant]

Jaha, since you live in OHIO do you go to the Cleveland Clinic to see a Wegeners specialist?

[Sangye]

drz, ask your doc to give you a prescription for PT to restore strength. They call it "work hardening" which sounds awful but it's meant to build you back up to a normal level of activity. The PT you had was rehab from bedrest. They can do much more for you.

Jaha, how much sugar and white flour do you eat?

[Jaha]

Elephant,

Yes I go to Dr Alexandria Villa-Forte at CC. She is great, and I'm very comfortable and confident in my plan of treatment. Sangye, I eat alot of sugar, but not so much white flour, I think away. I have been looking into a gluten free diet, and it's pretty complicated. I do insurance billing for Ohio Universities Physical Therapy dept and I think I need to talk to the boss about using me for student instruction or get a Rx from my Dr. Thanks for your concern. I hope to get stronger soon.
Jana

[Sangye]

Sangye, I eat alot of sugar, but not so much white flour, I think away.
Jana
Bingo, there's your "fibromyalgia." Cut out the sugar and watch it disappear.

[elephant]

Hate it when your right Sangye! I need to do the same! :biggrin1:

[Brooke]

I am on my 7th week of working out. It is great to be able to breathe! I walk on my parents treadmill and I have been building up my time each time I go on it. For the past 2 weeks I walk between 3.5 and 4.1 mph and I walk for 63-65 min, that will get me 4 miles. I have lost about 15 pounds since mid Dec. I started to lose some weight mid Dec ( prob from being of pred) and I think that gave me just the kick I need to start working out. I feel like it is coming off ssslllooowwwww.
A guy at my job is doing the HCG diet and is losing tons of weight but since I hear it isn't that safe I don't know if I should try it. He is only eating 500 calories a day and putting a drop of this HCG on his tongue - supposidly to make you not hungry and you aren't supposed to be losing muscle just fat. It is definately working for him as far as losing weight.

[gurinbasra]

I'm surprised that guy eating only 500 calories a day hasn't passed out yet - what kind of a diet is not about a life time commitment, it has to be something you can live with! Anyway, exercise is something I dearly miss. I was so much into my Pilates and Yoga classes for so long (10 yrs prior to WG) and now after being sick so often, at first I used to still sign up for classes for which most of them I was always too sick to attend and now I just don't go. Between that and the hearing loss, it's hard to take a fitness class anymore. Now I seem to have this guilt factor that I should be doing something, but as most of you have mentioned, you go ahead and do something strenous because you feel great that day only to pay for it in the next four days!

I've learned to just take it easy and push myself in the everyday daily routine, like always taking the stairs at work, standing on the train, and I do sometimes just casually go on my eleptical machine at home when watching TV instead of sitting and then I throw in a few pilates and yoga moves but not all at once. And right now its hockey season so I'm busy running my son to practices and games - it became exercise yesterday when I ended up carrying the heavy hockey jerseys and I realized how weak I was! Pacing myself is the key and I've been really lucky with the Prednisone for which I've now been on for 3 years and am still on, in that I never put on any weight even though my upper body & face grew to the point where my clothes won't fit, so losing weight is not my issue, but not having the muscle strength is something I have to work on. It's now 2 weeks since I completed my Rituxan and only now I'm feeling that I can do a few of my normal things and I'm hoping that by the summer I can do a few more things like a nice long bike ride or a hike in the Rockies.

[freakyschizogirl]

I do an hour a week (sounds really bad) of Zumba! Its high energy and i feel great after, wish i could do it everyday. Sadly i havent lost weight but i've lost inches. I also walk my pooch for at least half hour a night. Not to mention all the walking i do with my job. I should be super model thin! :w00t:

[Sangye]

Brooke, you're losing about 2 lbs a week-- a healthy rate. Faster than that is not safe. Your friend is putting his life at risk with such a plan. 500 calories is not enough to sustain the body during normal activities, and certainly not enough to rebuild tissue. If he's only eating 500 calories he's losing a ton of muscle. No matter what you do it's not possible to have such a low caloric intake and only lose fat. 500 calories is a starvation level. He is prone to sudden heart attack among other things, and some of the organ damage he creates can be permanent.

[Brooke]

Thanks Sangye - I almost considered doing that diet but I know it isn't the healthy way and "long term" way to do it. I just wish the weight could come off faster! That is what keeps me motivated - looking at the scale every morning.

[freakyschizogirl]

I work with people who have Prader-Willi syndrome, who are prone to over-eating and massive weight gain. They gain weight quicker than the "average" human so they are on a restricted diet of 800-1200 calories a day to maintain their weight. So your friend is doing a lot of damage with his diet.

And Brooke please dont look at the scales everyday...for one you dont need to and two you will only stress yourself out cos you're not losing enough day to day. Weighing yourself once a week is sufficient enough. But keep going, 2lbs off is 2lbs off. You'll get there in the end.

[elephant]

I agree with Sangye, you should not go under 1200 calories a day. Anyone who stays on that kind of diet ( less than 500 calories) for a week, can have severe medical problems. Weight Watchers is a good one to follow. Many of my friends have lost weight from Weight Watchers and kept it off.

[chrisTIn@]

...I'm glad your able to get out and work out, as soon as them dang blood clots are gone I'll be doing the same thing.
:) hope all keeps moving forward.

Hi Hilhoff! Very nice to see you here again. Hope your blood clots will be gone soon. Also hope you 'll be writing some more about yourself.
Did you allready see the Wegs specialist?

Thanks for all the other reactions on this thread too. Very inspiring!
Nice to see that forum-members practice so many different types of exercise. Running, hiking, walking the threadmill, Zumba, yoga and so on...
I had no setback from my little biking-tour, so I'm certainly going to do more of those things. Maybe swimming and the fitness-centre one of these days, but only if I feel like it. :tongue1:

[Bren]

Does anyone know if you exercise will it will lessen a flare? and make your blood work look better? I do 1 hour cardio and 1/2 strength training I am trying to stay a head of the game.. I have limited wegners and subglotic stenois so my breathing is harder I sound like a steam engine but I am exercising I am coming off a flare tapering me off Predizone starting @ 60mg I had lost my hearing it has coming back but I do have some problems in crowds . They have me on MTX also.

[Psyborg]

No idea on if it will, my gut feeling is in a true flare it would be nearly impossible to excercise. Coming off the flare would be different of course.

I'd be very careful @60 mg Pred. Damaging joints and tendons is very easy with high levels of Pred. The Prednisone also makes you feel invisible (well it did for me at that level anyway :p) and you might work harder than you normally would.

[NicShaf]

I have been walking regularly, for about 30 minutes 5 times a week, but it took me a while to work up to this. I started with 10 minute workouts, and slowly added 5 minute increments as my current workout got easier.

I'm not sure if working out will help a flare, but I think it has helped my blood work, namely my liver function tests. As I started putting on Pred weight, my ALT tests started creeping upward. As I started exercising, they went back down again and have been within normal range since...I can't help but think there is a correlation.

[pberggren1]

My doc told me not to worry about losing weight or doing cardio or strength training or muscle building until I am off of pred or at least a very low dose.

[Sangye]

Does anyone know if you exercise will it will lessen a flare? and make your blood work look better? I do 1 hour cardio and 1/2 strength training I am trying to stay a head of the game.. I have limited wegners and subglotic stenois so my breathing is harder I sound like a steam engine but I am exercising I am coming off a flare tapering me off Predizone starting @ 60mg I had lost my hearing it has coming back but I do have some problems in crowds . They have me on MTX also.
No, exercise will not lessen a flare and it could actually exacerbate one if you're overdoing it. If you're on 60mg of pred much of the energy you're feeling is from the pred. You have to be careful not to overexert and use up the resources your body needs for healing and dealing with the meds. Also, pred makes you more likely to rupture tendons and ligaments. If you're having trouble breathing at your current exercise rate, that is putting a lot of stress on your heart.

Having said that, some exercise is very good for keeping some muscle and all the other normal benefits. I suggest you exercise at a rate where you can breathe easily. You might also check out other forms of exercise that do not stress the body--eg yoga, tai chi, chi gong.

[Sangye]

The Prednisone also makes you feel invisible (well it did for me at that level anyway :p)
LOL Pred has made me feel more visible than ever. Enormously visible. :laugh: (just teasing you, Bob!)

[aewaustin]

Just a quick note... I am a runner, when I am healthy, and get quite frustrated at my limitations right now and tend to overdo it. I wear a heartrate monitor when walking or doing the elliptical and it really helps me to go too crazy with the exercise. If you are getting your heartrate up with any activities I highly recommend using a heartrate monitor so you know where you are at. This is an article written for runners but the information is good MarathonGuide.com - Heart Monitor Training (http://www.marathonguide.com/training/articles/HeartMonitorTraining.cfm)

[Psyborg]

LOL Pred has made me feel more visible than ever. Enormously visible. :laugh: (just teasing you, Bob!)

ROFL...I mean invincible. Invisible...not so much :)

[pwc51]

The rule from my rheumy when I was first diagnosed was to exercise but not exert. An interesting dilemma as there was no definition of either. A definition I have since heard is that, providing you can continue a conversation whilst exercising you are not exerting.

When I was first diagnosed I could not climb a flight of stairs without getting breathless yet a matter of weeks before I had been cycling over large hills near where I live. Once undergoing treatment I started walking daily, gradually bulding up to about 1 hour per day over the hills and covering 3.5 miles and a couple of hundred metres of ascent. Needless to say as soon as I was back at work full time the walking has become occasional weekend sorties and I feel the lack of exercise. I did head out on the bike for an hour this weekend but it was very gentle - descending is fun but any hills I find really difficult now!

[JanW]

I think that you also have to be careful when exercising with subglottic stenosis. Under the best of circumstances and no exertion you are more 'air hungry' than a normal person, and this in turn has all sorts of adverse impact on your health. You want to be careful about doing things that require even more oxygen.

[Bren]

thanks everyone! I really appreciate it :smile1: