Cystic Fibrosis Support Group

For our almost 3 yo daughter, it would be a mistake to have "scheduled" or "required" physical exercise or she would resist it as a task. Instead, we make sure she gets plenty of exercise each day doing what she wants - running around outside, kicking or throwing a ball, swingset/climbing, etc. Rather than make it a necessary part of her day because she is "sick" or defective in some way, we just plan to always greatly encourage her physical endeavors. It's important to take into account the psychological factors of this disease when dealing with children on a day-to-day basis.

We will be enrolling her in soccer as soon as she is old enough as this seems to be her favorite activity.

The head of my CF center is a big advocate of exercise. Any patient that is taken into hospital (they are put in isolated rooms cause of segregation policy) is equiped with weights and a hometrainer. A phsyiotherapist is taking care people will train at least twice a day for 20 minutes. To get the best out of it, they can put you on oxygen. Besides improving condition and possibly oxygenation, it is also a good way to loosen secretions. My doc always say "shake that secreations from left to right as hard as possible and they will get kicked out"


I have been quite slacky when it comes to exercise. untill I got a mycobacterium abscessus infection a year ago. I noticed an enormous fatigue. To fight that I have to exercise and I also take COQ10 and GHS supplements to get more energy.
I noticed then we I have forced myself to do something like mowing the grass, I feel better afterwards. So the motto is, even when you are tired, go do something and you will feel better. It is hard if you feel absolutely waisted, but you only get fitter if you do some thing. In hospital I had to cycle twice per day for 20 minutes. I did that for 10 months. Unfortunately didn't get much better as the abscessus was kicking hard, but my legs looked like Armstrong's. So thats's another good reason to exercise.

Something I am personally interested in is to get my hands on exercises that also influence my posture. As like many other CF-ers my posture has changed over the years which influences my lungfunction probably negative.

I found in the abstracts of the European CF Conference in 2006 following study:
Severe changed in posture were observed in 48% of the CF pts studied. In 84% of these, there was a difference in the levels of the shoulders. In 77% there were alterations in the spine, kyphosis, epressed chest, and externally rotated feet. In 69%, the head was slightly inclined to one side and the shoulders protruded. 61% presented lumbar lordosis as well as cervical and abdominal protrusions. All pts studied had a difference in the level of the hips. The incidence of chest alterations was high, which meant that the respiratory pattern was affected.

something even more interesting in the same European CF Conference in 2006 was an article 371 which basically stated the following: 371. This study developed an exercise regimen for
stretching and strengthening the chest, back, and abdominal muscles in order to improve the diaphragmatic length-tension curive. In all pts there was a marked improvement in posture, chest wall mobility, and body strength as well as subjective feelings of wellbeing. FEV1 improved and exacerbations decreased.
It is written by A Demry (Tamar Center)and S Ben Ami (Tamar Center)
Mand others from: Tamar Institute for Physical Therapy and Pulmonary
Rehabilitation, Tel Aviv, Israel.
If anyone can get that study, please let us know. Thanks in advance!

Hello, I work out daily w/ weights or running. I work my chest, arms, legs and back. I recently ran a half marathon in Philly only stopping for a couple minutes because my legs crapped towards the end.

I find that exercise helps a lot more than any treatments. Currently I am on Mucomyst, Albuteral and Chromolyn

My Pft's are in the 90s. I will be seeing Dr. H at UPenn on 10/9 for the first time after being w/ a Pediatrician my whole life.

Adam 23/m

Being 4 exercise is not a problem. He plays soccer 2days a week and takes swim class one day a week. I also take him to the park every day. He rides his bike and I rollerblade. It is a nice chance for us to play together and do something good for ourselves.

i usually walk 2 miles a day...

Exercise your butt off!!! I walk, run, snowboard, anything that keeps me active. Just get out in the sun and do what you love.