Getting exercised

[Al]

I want to start a new thread on a subject that fascinates me, in regard to possible interactions with ANCA diseases: exercise, as in how much is a good thing; how much is too much; and what kinds of are appropriate.

Up front I will say that I believe in staying active, except when the activity brings about further stress and--especially--relapse. But how to do this? I like to hike and climb, but is this a good idea?

To be blunt, even the professionals I have consulted come up with differing answers. (The first one I asked was one of my hospital nurses, Jeff. Jeff is an avid biker and rock climber, interestingly, he said no one had ever asked that question before, and he had never heard a doctor discuss real exercise [for the patient] either. The assumption was that patients aren’t feeling good enough to exercise.] There are, to be sure, hundreds of articles on exercise and cytokine production listed on PubMed, but, so far as I can tell, few if any discuss it in the context of autoimmune diseases. The best inference I can make so far is that mild-medium exercise is good; heavy aerobic exercise is questionable, even without the matter of getting fatigued. (Exercise releases both pro-inflammatory and anti-inflammatory cytokines, though usually only at the local site of the muscles involved. Systemic cytokine production seems to happen only with heavy exercise.) Of course, a certain amount of resistance work helps prevent prednisone-induced bone loss.

Anyone know more about this subject?

Al

[Dryhill]

This is purely my own thoughts on the matter.

Doing some exercise if you are feeling upto it should be alright as long as you do not go for "the burn". chose a non-strike exercise (ie swimming or cycling) over soemthing like running or weight lifting. Just doing something will probably help you stop feeling like a "sick old man" (of course then you will have to go shopping or to those parties you do not want to go to). Hiking is probably still ok but do watch for stress to the knees and hips.

I used to belong to a running club and during training for a double marathon (52 miles) I sustained an injury, like an idiot I still entered a very hilly marathon the next week and was in the cross-country team the following week. Many months and hundreds of £'s later I was able to walk more or less normally! It is interesting to note that all my running buddies are now having knee troubles.

[elephant]

Al, I often thought of the same question about exercise and Weggeners or autoimmune diseases. Right now I walk 20 miles a week, sometimes less depending how I feel. I was weight training but ended up straining my spine. I do have osteopenia.

[dutch]

My son's rheum said "do everything you can until you can't." The doc put no limitations on his workouts, only those that his body signals. The side effects of the high dose steroids, muscle inconsistency, limit my son.

[Al]

Al, I often thought of the same question about exercise and Weggeners or autoimmune diseases. Right now I walk 20 miles a week, sometimes less depending how I feel. I was weight training but ended up straining my spine. I do have osteopenia.

The walking should help a lot, and feel good, too. Maybe you can do some light lifting?

[Al]

My son's rheum said "do everything you can until you can't." The doc put no limitations on his workouts, only those that his body signals. The side effects of the high dose steroids, muscle inconsistency, limit my son.

Exercise does indeed send important chemical messages throughout the body. The problem for those used to a vigorous workout is in not picking up on the return signals that enough is too much. How do we deal with this? Steroids are a problem, as you say. I tend to cramp up from the prednisone. That's boring, and I don't mean in the good way.

[Rose]

Exercise does indeed send important chemical messages throughout the body. The problem for those used to a vigorous workout is in not picking up on the return signals that enough is too much.

Certainly something to this in my experience over the years. When I push myself to do a bit more I invariably suffer some form of relapse which could take me weeks or months to get over. The line is invisible and my body only lets me know a few days later that I have crossed that line. I just have to plod along on an even keel and no matter how well I feel I have to remind myself to hold back with the exercise.

[Rose]

When I push myself to do a bit more I invariably suffer some form of relapse which could take me weeks or months to get over.


Just want to clarify that statement. The relapse is not usually in the form of muscular aches or pains from over exercised muscles. More a general ill feeling. fatiqued, energy levels much less than before the exercise and gut ache when I have really over done it.

[Dryhill]

Exercise does indeed send important chemical messages throughout the body. The problem for those used to a vigorous workout is in not picking up on the return signals that enough is too much. How do we deal with this? Steroids are a problem, as you say. I tend to cramp up from the prednisone. That's boring, and I don't mean in the good way.

"How do we cope with this?" Now that is a really hard question and the answer is probably going to be different for each individual.

When I used to run there were a few times when I was not able to run due to an injury. My osteopath would tell me when I could resume running and would also give me a training schedule that would slowly bring me back to full fitness. Basically it was always the same, start gently and short distances for a week and then pick up the pace for the same distance then the third week add some distance at the same pace. Each week alternating between increased pace and distance.

I do not know how far you are walking at the moment but my suggestion is to take a nice gentle pace and add say half a mile and do this three or four times a week. After a couple of weeks add another quarter or half a mile and so on. BUT you MUST listen to your body and not overdo things.

[Sangye]

In general, exercise as much as you can. Caveats and cautions:
1) If you're on pred, it's very easy to tear tendons and ligaments. Don't do weightlifting or put high stress on your joints. Stretch very gently. If you're on pred and an antibiotic in the fluoroquinolone category (eg. levaquin) your risk of tearing a tendon or ligament goes quite high.
2) Another caution with pred: High doses will make you feel stronger than you are. Anything other than mild to very moderate exercise while on high dose pred is actually depleting the adrenal glands and will come back to haunt you later.
3) A good way to tell if you're over-exercising is to check how you feel 1 hr, 6 hrs and 24 hrs post-exercise. If you feel very sleepy, you've depleted your adrenals. Emotional irritability is another sign of overexertion.
4) Remember that your body is recovering and dealing with tons of toxins (from drugs and inflammation). That uses a LOT of the body's resources. Don't exercise so much that your body can't heal. You can cause a flare or delay remission.
5) It's best to go for time, rather than intensity or speed.

[Al]

Thanks, everyone. In general, I agree with all the advice: Exercise and stay active, but not to the point of adding extra stress to already stressed systems. I maintain, however, that, while acknowledging the caveats and cautions, some weight work (at least, light-duty) is desirable to combat bone density loss.

My bigger point, I think, is that almost nothing seems to be written about exercise in the context of autoimmune diseases. Given the fact that those ailments are almost certainly on the rise, this would seem to be fruitful field for research.

Al

[pberggren1]

Do what you can. If you can't breath, then I suggest exercising the remote.......lol

[pberggren1]

And being Batman has a few advantages like not having to exercise.......lol

[Al]

And being Batman has a few advantages like not having to exercise.......lol

Though you do have to go to all those conventions in a cape...!

Al

[pberggren1]

Oh no, I do not use the cape for conventions.....lol, I just go as Bruce.

[Dryhill]

"some weight work (at least, light-duty) is desirable to combat bone density loss."

I take two tablets a day of Adcal/Natecal which is calcium carbonate and vitamin D3 and once a week (today actually) 70mg of Alendronic Acid. These are to help protect against bone density loss. However I agree that if one can do some exercise it is better than popping pills all the time. Plus you should feel pleased that good old WG is not in total control.

[Dirty Don]

I think weight work, light or heavy, goes a long ways. I do light reps at least 3 times a week, mostly upper body. Also have added 3D exercises: basically lunges and thrusts (however haphazard they may be!) at different 'working' angles of the body...had a very good PT and he introduced me to these. Anyway, my point is: I'm pretty sure I wouldn't have recovered or be on the road to such if I hadn't been working out. I know it takes time and effort and some days, none of us have that in us...sheesh! But, it does while away the time, takes focus off the disease, pumps adrenalin into the body, sorts out other ills be they physical or mental/emotional. Just keep working out...even if it's a walk around the block...helps so much! Also, stretch...stretch, then stretch some more! Always good for ya!! Right up there with chicken soup!! LOL!

[Al]

I think weight work, light or heavy, goes a long ways. I do light reps at least 3 times a week, mostly upper body. Also have added 3D exercises: basically lunges and thrusts (however haphazard they may be!) at different 'working' angles of the body....Right up there with chicken soup!! LOL!

I had a practitioner show me some Tai Chi and Qigong exerises, which I enjoy a llot. They are low impact, but greatly relaxing, and they do wonders for my lungs. (You don't have to be a "Qi" enthusiast to get some benefit!)

I think there are two kinds of signals to be aware of in exercising. One is that suggested by many in this thread: listen to the body when it says, "enough!" The other kind is the internal chemical signalling system. It is known,for instance, that at a certain level of intensity, the released chemical messengers promote BDNF (Brain Derived Neutrophic Factors), VGF (Nerve Growth Factor), and Dopamine (The "feel-good" neurotransmitter that is is short supply in Parkinson's; indeed, heavy aerobic exercise is now standard therapy for Parkinson's patients). With no movement, the necessary signals are not sent. It's like the body needs to be constantly reminded that it is still alive and kicking! Again, the trick is in balancing things: We are built to require some stress; but healthy people can overdo it without consequences; we can't....

Al

[pberggren1]

Dryhill: Calcium Carbonate is no good. Citrate is much better and find a good quality one from your holistic doc. Carbonate is not really absorbed much by the body where as Citrate is.

Dirty Don: 3D is no good. 4D is much better.........lol

[drz]

Depending upon your stage of recovery, you can get some pretty good guidelines from the PT and OT people working on your rehab program. At the rehab hospital, after I recovered enough to leave ICU and the medical unit, their purpose was to build enough strength so i could walk again and do some normal living activities and enough endurance to complete a small task without over doing it. They measured my heart rate and O2 levels frequently and had strict guidelines on how high my heart rate, respiration could go and how low my O2 levels could drop. If I went beyond these, I stated bleeding in my lungs again and that set back the whole program and destroyed any progress.

The next facility rehab program operated pretty much the same, but added more work on balance issues and fall prevention so I could operate more safely and reduce the risk of a fall since that would end me up back in hospital long term. They frequently tested for improvement in strength and endurance and charted all progress. It was easy to know that walking 30 yards was much better than walking 30 feet so every week you tried to do more without creating any damage to the body that would undo any progress. The exercise equipment all had settings to increase resistance or increase the time of any exercise.

I think the same principles could applied to more vigorous activities where you are talking miles of running and lifting heavier weights.

My wife though had poor luck trying a local sports medicine trainer to help her improve her endurance. They seemed to have little or poor appreciation of the physical limits many of have to deal with from our chronic diseases and health issues. They usually work with high school and college athletes and seem to have trouble recognizing our physical limitations.

[Al]

Good point about balance and fall prevention. (Falls have more dire consequences for us, particularly for those of us on weird drugs.) Your story about the sports medicine trainer is exactly why I ignore the heavy sales of personal trainers at my gym. But it does seem like an open field for someone with the right knowledge and understanding. (This also, by the way, reflects my attitude about nutrition and nutritionists. If we could just get appropriate, accurate and reliable coaching on both exercise and nutrition, that would be a major help!)

I am lucky that most of my pains were, shall we say, emotional rather than physical. I couldn't wait to walk, so I did, for miles each day, in the hospital. The fact that it made the hospital staff nervous improved my spirits immensely!

Al

Al

[Pete]

Thought I would post to this thread because there is some really good info that some of the newer members might not find easily.

I met with a fitness coach at the YMCA this morning to learn what I can do to strengthen my core abs and upper body as well as start losing the belly fat (pred pounds). I'll start with chest press and shoulder press machines (3 sets of 10 reps with 25 lbs resistance). I'll also do three sets of 10 ab crunches. I'll continue to walk - about an hour when I don't use the machines and 20-30 minutes when I do.

I'm hoping to be able to wear my size 34 pants by spring. Wish me luck and perseverance!

[drz]

Thought I would post to this thread because there is some really good info that some of the newer members might not find easily.

I met with a fitness coach at the YMCA this morning to learn what I can do to strengthen my core abs and upper body as well as start losing the belly fat (pred pounds). I'll start with chest press and shoulder press machines (3 sets of 10 reps with 25 lbs resistance). I'll also do three sets of 10 ab crunches. I'll continue to walk - about an hour when I don't use the machines and 20-30 minutes when I do.

I'm hoping to be able to wear my size 34 pants by spring. Wish me luck and perseverance!

Good luck. I gave my size 34 pants away but still have some for a lower size or two smaller. I haven't tried a program as ambitious as your yours but might try increase my exercise levels a bit to see if it helps.

[Pete]

Good luck. I gave my size 34 pants away but still have some for a lower size or two smaller. I haven't tried a program as ambitious as your yours but might try increase my exercise levels a bit to see if it helps.

Go for it!! We can be virtual workout buddies.