[daryn-body]

Hey all! It’s been a minute since I was on here. Trikafta has changed everything! I find that my body reacts so differently than before. All mostly for the good!

It was my understanding that the lungs can’t actually feel pain; but the surrounding musculature and tissue can as a result of inflammation or tightness; etc. I have always had painful spots that almost seem to “pop” when the hurt starts. The pain is unbearable for the first few seconds and because it is sudden onset, debilitating sometimes. It occurs in the interstitial space between the ribs in the muscle. Almost always it is relieved by massage and stretching. Before trikafta I had more spots variously located around the front chest wall on both sides. Now it seems to occur only on the right only and much less frequently. If I haven’t been keeping up my exercise and stretching routines; it tends to flare up.

Sometimes if I wear a mask for a prolonged period the pain seems to pop off. Probably due to the diminished breathing capacity and labored breathing.

I do find that albuterol helps because of the relaxing effect from opening up the airways.

Great discussion point Jenny!

[daryn-body]

Great topic Jenny! So true!
It’s hard to know what to expect from my body in the Trikafta realm; greater stamina; increased workout tolerance; seeing faster results from workouts; harder to lose weight (putting weight on… what??), simpler therapy (even postponing/skipping sometimes [not recommended]); etc.

Sometime ago I had set a 10 year (non-verbal) plan to get my affairs situated so that when CF finally did the final deed on me, my family would be situated to continue. Well, I’ve blown through some of those years without even noticing and the 10 year has become an unknown timeframe now. Having to plan for the future is so different from the expectation of yesteryear. I was even moved to start up the 401k again.

I keep waiting for the crash and subsequent exacerbation resulting in hospitalization… and it hasn’t happened! Of course there are little dips; but I am able to recover with rest and increasing  therapy temporarily.
I like it! It’s more fun living this way for sure!

[daryn-body]

Hot/cold showers are a great remedy for me! Helps the body aches, congestion (cause of rapid breathing during the cold cycle) and generally resets the body. I have several herbal remedies I use as well. Of course, more rest! Thanks for sharing your experiences. Trikafta has changed the face of CF forever…

[daryn-body]

Absolutely Yay! I have been getting massage for years.
I have found that easing the tension and muscle tightness around the chest cavity makes therapy easier and loosens secretions. I am especially partial to traditional Thai massage; after experiencing my first one in Thailand in 2015. We had a very nice, traditionally run, local place that we would go to once a month pre-Covid. Before that it was sports massages periodically. I also think chiropractic work is essential to CF body management; for the same, and additional postural benefits.
Add to that a Hypervolt; which I use nightly. This is a great tool to help post-workout to loosen everything and flush out lactic acid. Sometimes, I will use it pre-workout also; to prep for running or lifting. I struggle with tight calfs. This is a great tool in my arsenal.
All in all, I think keeping the CF body as limber, pain and inflammation free as possible is beneficial to lung health; not to mention the psychological benefits.