Many people would assume that strength training and cystic fibrosis are mutually exclusive. Nothing could be further from the truth.
First of all – what is cystic fibrosis?
“Cystic fibrosis is an inherited disease caused by a faulty gene. This gene controls the movement of salt and water in and out of your cells, so the lungs and digestive system become clogged with mucus, making it hard to breathe and digest food”
Source: www.cysticfibrosis.org.uk
I have trained my client with cystic fibrosis (CF) for over 4 years now. He came to me knowing that with his condition, he actively needed to be on top of his health and wanted to know how best to do it.
Mark is a partner in a national law firm. As well as the kind of workload you’d expect at that level, he routinely has extensive travel commitments around the UK. He’s also married and has two teenage daughters. For his sins, he’s also a Man Utd season ticket holder and so routinely has a long day every other weekend trekking up the M6 from Nottingham. This is a guy that doesn’t get much free time, and does more than most people that have half the excuses.
Why prioritise strength training in Cystic Fibrosis, and how is it different to everyone else?
The short answer is that it can extend life, and improve quality of life. The answer to the second question is ‘not that different’.
We train together usually twice a week. After work on a Monday, and on a Saturday morning.
Nowadays, we focus on strength training – for a CF sufferer, retaining muscle mass and flexibility is crucial to health. That’s a lot of squats, deadlifts, and a great deal of posterior chain work in general to help prevent the upper spine curvature and pec-tightening, shoulder-rounding common in Cystic Fibrosis. I’ll detail what a typical training day looks like later in the article.
Initially, we trained in Mark’s home though. We had to be inventive with training methods because of limited equipment, and limited fitness. Cystic fibrosis typically restricts lung function, and when we started Mark’s was in the low 40%s. Imagine having a really, really bad chest infection and finding breathing hard – that’s what probably 60% lung function feels like.
So, priorities are to keep lung function as high as possible. That doesn’t mean hammering someone with cardiovascular work until they can’t breathe. It means constantly pushing that boundary, then backing off entirely to allow breathing to recover – however long that takes. To that end, we used kettlebells and bands a lot, as well as bodyweight exercises. This was also stuff that Mark could do in his own time once he got used to technique.
After a year of strength training, a couple of things had happened.
Mark’s lung function had gone up a little. He’s 44 – that doesn’t really happen in cystic fibrosis. His muscle mass had increased. His bone density had increased; another thing that just doesn’t happen naturally.
Exercise had improved his lung function and lean mass. His bone density had improved despite the presence of such a debilitating disease. Any cystic fibrosis sufferers reading this will know what a big deal those things, particularly the lung function and retention of mass, are.
As I said, we now train in the gym at RWF and are able to strength train a little more. We can squat and deadlift relatively heavy, and we have more access to equipment to help keep posterior strength up.
Maintaining muscle mass is really difficult, because Mark is also Type 1 diabetic, insulin dependent, and has to have a nightly feed tube mixture of carbs, fats and protein to keep his weight up. If you imagine ingesting 1500kcals of liquid calories overnight simply to keep your weight up, you can see the challenges involved in keeping someone fairly lean while having to combat such a high fluid kcal intake.
We have noticed that it is possible, with extensive training, to increase muscle mass significantly and keep body weight up. A year ago, Mark took a 5 week break from work and we managed to see each other 4 times a week for most of that period – as a result, that was the first time we got above 80kg in bodyweight. The body responded very well to a large increase in training volume, and if time allows, is definitely something for cystic fibrosis clients to consider – training more (but intelligently) is *less* debilitating than you’d expect, given the other demands the body is facing.
We have had to contend with some difficult health issues as complications common to cystic fibrosis as well. Gout was something to be overcome and worked around, and more recently, a frozen shoulder has developed – both things that are fairly typical with Type 1 diabetes, and are compounded by the presence of cystic fibrosis. We’ve always tried to find a way to work around these issues and –to date – haven’t let those things hold back progress.
Periodically, typically every 4 months, but sometimes more frequently, Mark needs to go into hospital as an in-patient for an anti-biotic IV that helps to clear out the build-up of bacteria. This is a debilitating treatment that has parallels with chemotherapy, and as such, will leave Mark out of action for up to a month afterwards. He comes back in, we start from a new base point, and we re-build. This process will happen repeatedly. So far, we’ve been able to hit new highs in-between each treatment and hopefully can continue with that. It can be demoralising to ‘start from scratch’ every time, but we try to make sure there’s a new target to aim for each time; something different that can be a focus.
We’ve also found that despite these set-backs, the starting point every time is a little higher than the time before. This suggests that the strength gains are held, to some extent, despite the treatment and the 4-6 week layoffs.
A typical strength training day:
On a normal day, this is the kind of session we’ll run for Mark:
Trap bar deadlifts 5×5
Safety bar squats (frozen shoulder issue prevents normal bar at the moment) 5×5
Rotator cuff work in-between sets to help keep the frozen shoulder supple as possible
Inverted rows on TRX/rings 4×10
Swiss/football bar bench presses 4×8
Rest times are dictated by his ability to recover that day; not what is ‘optimal’ in usual circumstances.
So, as we said, it’s a case study of one person. But what it does show is that cystic fibrosis needn’t stop someone from looking out for their health, and the effects of the strength training can be pretty impressive on some key indicators like lung function, lean mass retention and bone density. From the experiences we’ve had, there are no contra-indicators to avoid particular exercises – if you’re a person with CF, don’t be afraid to get lifting. If you’re a personal trainer with a CF client – don’t shy away from treating their training as normally as possible, within the limitations of that individual.
Oh, and well done Mark (even forgiving the football).
