Pain Management in Adult with CF

[Nicole Emily Buckley]

Hi All -

I am new to this site and wanted to begin communicating with other members of the CF community to gain information about treatment. My boyfriend is 26 year old male with Cystic Fibrosis. Recently his left lung collapsed and he under went invasive surgery. We are having a hard time with his pain management doctor currently, who no longer feels comfortable prescribing vicodin (fears he will become "addicted")- my question is what pain management are other people using for severe chronic pain and what options are out there. Without pain management I fear the quality of life is very poor for him and he is unable to do simple things like get up out of bed in the morning. Really looking for some HELP!

Thank you!!!

Nicole

 

[giantsfan91]

Is his collapse resolved? My right lung has collapsed 5 times since November (long story) and the only time I would have pain is during a collapse, after a chest tube placement or after a surgery. After a few days my pain was not bad at all in fact I still have a chest tube in and on a heimlich valve and not taking any pain meds. I would suggest your boyfriend try regular tylenol (not advil or any other anti inflammatories) if he's not in the hospital. My thoracic surgeon was very generous with me with pain meds, he gave me a script for a large amount of Dilaudid tablets but I found I only needed them a day or so after I had come home from the hospital. The reason I'm discouraging the narcotic stuff is because they aren't really good for breathing and if your boyfriend had a collapse his FEV1 is most likely < 50% and the last thing he needs is to not be expanding the lungs and coughing stuff up. Unless he's in so much pain that it's stopping him from coughing and taking deep breaths all together, then he should be taking stronger medication that will allow him to cough. I would have his CF doc and thoracic surgeon cooperate to come up with the best pain management plan.

 

[Nicole Emily Buckley]

Thank you for the response. I am so sorry you are still dealing with the collapsed lung issue - my BF went 3 weeks in the hospital with a chest tube realizing his lung would only collapse again if the tube was removed. Surgery was the only solution to fix the collapse long term. Are they giving you that option? Ps his lung collapsed in September 2012and he was out of the hospital 6 weeks later in October. Now he is home on oxygen 24/7...


He has had lots of body pain, back pain, deep chest pain and lung pain for the past two years. Only has been prescribed pain killers such as ultram and Vicodin the past year. Ultram does not seem to help and Vicodin really does control the pain very quickly! Without pain management he coughs much more causing more pain and has a very tough time throughout the night and in the morning.

He takes several hot baths, uses muscle creams, heating pads and nothing seems to get to the deep pain within his body. His base line pain is 6/10.

Frustrated as it is sometimes hard for doctors to understand his level of pain and frequency of his pain.

I thank you for taking the time to respond and I look forward to future communication.

Talk soon!

Nicole