Posted 23 November 2009 - 10:38 AM
I thought I would ask to see if others have the same problem as me and if it is a typical Scleroderma thing. I have lung function tests every year which I seem to be able to pass quite well but this test is carried out using a long, steady breath in and out with variations on that theme. My problem is that it takes more than normal effort to fill my lungs when I breathe and this becomes exhausting especially if I exert myself. I am wondering where to go with this as I can exercise less each year.
Your opinions would be really appreciated.
Posted 23 November 2009 - 12:40 PM
Those pulmonary function tests can really be tiring, can't they? What most of us don't realize is how many muscles are involved in breathing - lots and lots of them. They move the ribs, help the diaphragm (it's a big muscle) push air out, pull air in. When, for whatever reason we're having to work harder to breathe, it's no wonder we get tired. Doing the spirometry (which is what I think your tests are, although I could be wrong) isn't a normal way of breathing for most of us and I think that's tiring in itself.
Of course, this is something best addressed by your doctor, but one thing you can do to help yourself is to keep your chest muscles strong. There are some exercises that can be done with a resistance band. I have a stretching exercise that was prescribed to help with my chest expansion which is somewhat restricted. Always paying attention to your posture is helpful because the same muscles that support good posture are used in breathing. Sigh, no more slouching in a warm and comfortable recliner~
Another thing you can do is watch your weight. My pulmonologist who's pretty hot on the weight issue showed me a comparison of my chest CT's before and after I'd lost only 2 kilograms. The breathing room I acquired was astounding.
I guess the best thing advice I've had that you could also use to motivate yourself to exercise is: the less you exercise the less you can. I'd talk to your doctor about setting up an exercise programme. The stronger your muscles are, especially the big muscle groups, the more efficiently they use oxygen. I suspect your doctor would also point out the cardiac benefits of exercise.
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Posted 24 November 2009 - 10:26 AM
Many of us experience some subtle (or not so subtle) changes in exercise endurance or capacity with systemic scleroderma, even without a significant reduction in lung function (due to pulmonary fibrosis or pulmonary hypertension) or heart problems to account for it.
In fact, they have discovered that some yet-unaccounted for heart/lung/skeletal/calcinosis/whatever changes make it so that the six-minute walk, a standard part of lung function evaluation, is not accurate for evaluating the effectiveness of cardiovascular therapies in scleroderma patients. See: Pulmonary Hypertension Diagnosis: Six Minute Walk for abstracts about this.
You'd want to make sure, of course, that you've already been screened for signs of Heart Failure, which can also cause shortness of breath and exercise intolerance. However, you have likely passed muster on that already, which is why you're perplexed.
Anyway, many of us find that our exercise capacity has changed due to scleroderma. That usually doesn't mean that we can't exercise at all anymore, just that we need to adapt, sometimes with different forms of exercise or modify our expectations for pacing or distance.
It also doesn't mean that we are developing alarming or significant heart or lung problems; just that we have arthritis (in the form of scleroderma) and that things just aren't what they used to be. Our "new normal", so to speak.
So to answer your question, yes, it is a typical scleroderma thing, and yes, many of us experience it even with reasonably good heart and lung function.
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Posted 24 November 2009 - 11:00 AM
Posted 24 November 2009 - 11:50 AM
In answer to your query I would say that the lung function tests are exhausting particularly if your lungs are damaged and therefore not functioning as well as they should. I've also found personally that there is a little bit of technique needed to do the tests correctly.
I have Non Specific Interstitial Pneumonia which is a form of Pulmonary Fibrosis and have full lung function tests every 3 months and a spirometry every month at present. However my lungs are showing signs of improvement as I used to literally cough my guts up throughout the entire tests when I first had to do them; lately though I've been able to do them and have hardly coughed at all. Also my oxygen and carbon dioxide transfer (which was the main problem) has improved; my actual lung capacity was never actually a problem as prior to having Scleroderma I was extremely fit and in fact after the 6 minute test that Shelley mentions my consultant said I had started with 'super' lung capacity so hardly desaturated at all!
I am, however, an exercise addict and spend most of my life at the gym (sad case that I am!! ); thank goodness because that and the fact that I've never smoked saved me from suffering much more than I have. Obviously I have had to tone my exercise regime down as I used to run half marathons which sadly I can't now; nevertheless my quality of life is still pretty good and I put that down to a) keeping a reasonable weight and b ) still being able to exercise albeit not as much as I did. Like you I'm also on a low dose of steroids which have eased my painful joints and so far I've managed not to put on any extra weight because of them ( I'm extremely strict with my food intake and I don't do weight gain!!! )
I do hope this post will be of some encouragement to you; Scleroderma is a beastly disease and we need all the encouragement we can get!!
Kind regards x
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Posted 24 November 2009 - 02:12 PM
I learned that higher than normal lung capacity can often be a symptom of early-stage lung disease, especially for those who get a great deal of exercise.
The problem, however, is with the lung "diffusion" - which is a measure of the amount of oxygen absorbed. This figure was about 70%, indicating that the lungs were not absorbing as much oxygen as they should, so they tend to increase wind capacity to overcome this. It took a pulmonologist to figure this out. My regular physician looked at the high capacity and figured that I could not have a problem. A few years later I was diagnosed with pulmonary hypertension.
Thus I always like to keep a close watch on my "diffusion" figure any time I have one of these tests.