What Is a “Nonclassic” Cystic Fibrosis Symptom That You Experience?
Everyone in the cystic fibrosis community can name the telltale symptoms of CF: coughing, shortness of breath, gastrointestinal issues, frequent infections, and salty skin. However, there are so many more possible symptoms. We reached out to our team of cystic fibrosis advocates and asked them what "nonclassic" CF symptoms they experience.
Here is what they had to say:
"Nonclassic" cystic fibrosis symptoms
Response from Janeil Whitworth
Apart from having every classic cystic fibrosis symptom in the book, one of the most upsetting “nonclassic” symptoms I have experienced has been female infertility. Some women with CF have issues getting pregnant due to thick cervical mucus, lack of ovulation, and malnutrition, and some don’t.
With our 3-year-old son, we got pregnant right away, but that wasn’t the case when trying for our second baby. After months and months of failed fertility treatments, we finally got pregnant after I completed a course of IV antibiotics. Sometimes CF can rear its ugly head in the most unusual ways.
Response from Marieliz Landa
A nonclassic cystic fibrosis symptom that I do not hear a lot about is the sheer amount of pain that you are in on a constant basis. Pain becomes so normal that as a patient you get used to it because it has become part of your everyday. Chest pain, joint pain, migraines, etc. There is no shortage of where you have pain. As a person living with CF, I have a high pain tolerance, and that is because I am so used to it that I can tolerate a lot, because it has become my normal.
Hypersensitivity to scents
Response from Emma Boniface
I have never really thought about nonclassic cystic fibrosis symptoms before. Having asked a few CF friends if they experience things I do, I concluded that my sensitivity to certain smells is pretty unique. I have always been hypersensitive to everyday scents that can trigger a tight chest, wheeze, pain, and breathlessness.
We all know the obvious ones like aerosol deodorants, smoke, and fumes. But other things I find trigger me are gasoline, flowers, soil/dirt, perfumes, scented candles, reed diffusers, certain spices, and certain foods.
The effects of being around these different things can last for days after exposure, which has been known to cause my spirometry to dip. I avoid them at all costs now, including telling my boyfriend to lay off the aftershave and ensuring all my cleaning products are scent/alcohol-free.
Response from Holly Williams
Constipation. We have had the hardest time managing my daughter’s GI symptoms because they are so atypical from her fellow toddlers with CF. Her lung health has been steady, but her constipation is painful and sometimes frequent, no matter what we do!
Response from Kate Eveling
A nonclassic cystic fibrosis symptom that I experience is something called “reactive hypoglycemia” or “postprandial hypoglycemia.” This is different from CF-related diabetes hypos, because my blood sugars drop very suddenly 1 to 2 hours after I eat something that has a high GI. The glycemic index (GI) relates to how quickly carbohydrates are absorbed by the body. So if it has a high GI, it will be absorbed quickly; a low GI will be absorbed slowly.
So, in basic terms, my pancreas is slow to release insulin at first, but when it finally does, it releases too much, too quickly, causing things to go downhill quite rapidly. The quick answer is to eat or drink something sugary, like jelly babies, which will bring up those sugars quickly. The long game is to become mindful of what foods I am eating, and how I can prevent or slow that sudden drop.
For me, it started out when I was around 17, and roughly 2 hours after eating breakfast my blood sugars would drop. When this happens, I feel shaky, weak, dizzy, I start sweating a lot, my heart beats faster, my vision can go blurry … in short, it’s not very nice! And it was down to the breakfast cereal that I ate. So things like Cheerios or Frosties (all the nice stuff!) would make my blood glucose level drop. Unfortunately over the years, it has got worse, and now it’s not just with breakfast, it’s any time of day ... or night, for that matter!
My dietician explained that this could eventually turn into CF-related diabetes ... so that’s something to look forward to, eh!
Aches and pains
Response from Katelyn Harlow
I experience a lot of bodily aches and pain. It can be so bad that some days I can’t get out of bed. There are a few things I do to try and manage the pain. Despite my best efforts, sometimes the pain can’t be contained. When my pain is unmanageable I am confined to bed all day.
Response from Ella Balasa
This is not the most easily talked-about symptom (but, then again, what symptoms of CF are?), but I think I burp far more than the average person. Sometimes even in the morning when I have just woken up and haven’t even eaten anything. Sometimes the burps are quite smelly, too, and this can be embarrassing depending on where and who I am with.
What nonclassic cystic fibrosis symptoms do you experience?
These are just a few of the many possible symptoms people with CF may experience. What about you? Have you or your loved one with cystic fibrosis experienced any other symptoms? We would love to hear about your experience. Please share your story with us or connect with others in our forums.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?