Healthy Living

Tips to Help Manage Cystic Fibrosis Pain

Help to Manage Cystic Fibrosis Pain
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Tips to Help Manage Cystic Fibrosis Pain

Dealing with the pain of cystic fibrosis (CF) can make each day that much more difficult. As if people living with CF didn’t already have enough medications and treatment to fill up their time, there are many painful side effects that they must be careful in handling.

As far as pain goes, it can be a mild and localized discomfort, or it can manifest as ‘way above a ten’ on the pain scale. That’s where ‘just plain agony’ resides.

Which type is yours?

For adults with CF, pain is a reality.

Tips from Brad Dell to help deal with the pain

“Think of your pain as merely a bunch of nerves acting up. It seems less doom-y when you realize it’s just a bunch of cells in your body throwing a fuss.” (From Brad’s column in Cystic Fibrosis News Today: ‘7 Tips for Managing Your Pain.’)
Brad also suggests you do some “light’ exercise to release your brain’s endorphins which can ‘naturally’ act in your favor by blocking pain signals. Or relax by working on a hobby, or reading a book, etc.

More about pain

Those with cystic fibrosis are living longer than in the past, and it’s been shown that pain increases as the years pass, and the disease progresses (Science Direct).

In fact, the findings of a 2003 study on pain for those with cystic fibrosis are still applicable today.

Science Direct offers internet access to the study, published in the March 2004 edition of Journal of Cystic Fibrosis:

The main purpose of this study was to determine the presence and extent of pain in adults with CF. Results of this study showed a marked incidence of pain in those studied:

  • 32.6% of patients experienced episodes of pain described as intense to severe
  • 29.7% had more than 10 occurrences of pain in the same location over a 2-month period. (The most frequent types of localized pain were headache, belly pain, and backache.)
  • 59.8% of those experiencing pain, identified its presence as negatively impacting their quality of life.

Also, very few of those in the study with CF pain had approached a physician for assistance in managing their pain. (Presence of Pain in Adults with Cystic Fibrosis: Filippo Festini, Silvana Ballarin, and Teresa Codamo, et al)

The study’s conclusion: Painful symptoms can negatively impact quality of life for adults with CF; the relevance of pain in CF adult patients may often be underestimated; and the assessment of pain should be routinely performed as a part of care in CF centers. (Science Direct)

A more recent study, conducted in 2015, compared reported pain levels and occurrence in adults with CF who’d had lung transplants vs. those who did not. The information was acquired via questionnaire. (Journal of Cystic Fibrosis/JCF)

The findings demonstrated that frequent pain is still an issue for adults with CF, whether they’ve had a lung transplant or not. This study again noted the need for frequent pain assessment by the physician. It also called for research with the purpose of implementing a pain-management plan for those with CF.

In fact, Brad Dell tells us “Frankly, cystic fibrosis is a painful disease and we could all use a little help with releasing the burden of pain at some point.” (Cystic Fibrosis News Today)

Read further for some tips in managing CF pain.