CF and Bone Health

[baco623]

I am 26 years old and have both cystic fibrosis and cystic fibrosis related diabetes and had a double lung transplant in September of 2010. For about 5 years now I have had serious problems with my bones. My ankles and wrists are particularly weak and my knees are the worst. At times I can barely walk. It is the worst when I try to work out, which I have to do every day in order to maintain good lung function. I can walk on the tredmill but I can't run at all, it feels like both my knees are going to give out.

Has anyone else experienced this before? What do your doctors say about it? Is there anything I can do or anything you would recommend?

Thanks so much,
Annie

CF since I was born/CFRD since age 13/double lung tx on 9/3/2010

 

[SaraNoH]

Well, Cystics are more prone to osteoporosis because of the whole vit. D thing.
However what you are describing sounds like a musculoskeletal problem, not just your bones (but one affects the other in certain ways so...). And by musculoskeletal I mean general deconditioning, weakness, fatigue, that sort of thing, which happens, especially to people who are sick.

Is there any way you could discuss this with your doctor? You may benefit from physical therapy which can help strengthen you up a little and recondition you so you're able to do what it is you need to do. Btw, the more you work your muscles, the more they pull on and stress the bone, meaning they get stronger . Yay strong bones!

 

[Twistofchaos]

Hi there,

Running and to a lesser extent walking is just hard on the knees and some other joints anyway you look at it.
Your step and shoewear have to be spot on to not get problems and even healthy regular runners tend to develop all sorts of problems and often.

Used to be a regular walker/runner too and developed kneeproblems but I also had hurting joints and weak tendons and ligaments all around more and more as a vicious circle of being sick etc. but I changed most of that around by picking up weightlifting. For example squatting with good technique is just a healthier form of load on the knees than running (even though it might not look like it..) and it improved my knees instead of worsening them. So that's worth a try. It fixed a lot of aches and weaknesses around my body and more than likely made my bones significantly stronger though unfortunately I never had that measured.
Varying intensity, volume and rest between sets weightlifting functions to improve cardiofunction just as well.