Pain

Question

My daughter (CF, 18 years) has horrifying pain at her joints and "bones". They change from shoulders, neck, hips, legs....sometimes very strong, sometimes very weak. Now I have heard, that there could be a connection with CF. She can stand it sometimes only with painkillers. Where can I get some more information about a possbile connection?

Answer

Hello,
it is true that not few patients with CF suffer from joint problems - it is the so-called CF-arthropathy. Mainly the large joints are involved but every joint can be painful and it comes and goes independent of infections and can last for days and weeks. The cause of these joint pain is not clear, but it leads not to a destruction of the joints in contrast to rheumatism.
Of course other reasons for the joint pain have to be ruled out such as rheumatism, a specific test for the CF-arthropathy does not exist. The only therapy is the intake of painkillers which have also an inflammation depressive effect. In most cases the so-called non steroid-anti-rheumatic drugs are used such as e.g. diclofenac. Unfortunately this has also side-effects and especially with gastro-intestinal problems it can be not well tolerated.
It would be the best that your daughter talks to the CF-doctor in charge, what she can take in the times of pain, in order not to be impaired too much.
There are patients however, who have the pain in some phases of life and later only seldom or not at all, so that there is a good chance that it gets better.
Yours sincerely,
Prof. Dr. Joachim Bargon

21.09.2010

21.09.10 A similar question has been posed on this topic, with much information around CF-associated joint problems. Please see under topics--accompanying diseases--"cystic fibrosis and arthritis".