Summer 2001 ~ Newsletter
Pain Management
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Patient and Parent Perspectives
Medicine May Help
by John Rasimas
I am 29 years old and currently live in Michigan. Only in the past three (3) years has my CF begun causing real problems. For the past 2 years, I've been on oxygen 24 hours a day, 7 days a week. Before this time, I had been working a kitchen, and living a life as normal as possible, with CF.
I went to college for almost 4 years before deciding that I needed time off. A friend and I began to travel. It is hard to believe that just six or seven years ago the only medicine I was taking was Pancrease MT 16's. I'm telling you this ;to help give a better view on my background.
Now, on to the subject at hand...pain with CF. To be honest, I didn't really deal with pain that often, up until the past few years. The most pain I have is in my back, due to poor posture by leaning forward to breathe easier and to help bring up phlegm. At night, my back pain is at its worst.
Another issue that I deal with is getting bad headaches. My headaches are aggravated by coughing spells. My digestion has also started to give some amount of discomfort. I try to eat as healthy as possible. Many times it is hard even to work up an appetite because of cramping that makes me not even want to eat.
In the past, I have taken some pain killers, the majority being codeine types, like Vicodin. When I was on these meds, my digestion became 80 - 90 % better. I found these meds may cause constipation, which because of the CF almost made me "regular". These kinds of meds also seemed to give me more energy to get around and be able to do things again. I exercise more, my appetite increased, and basically I felt better all around.
I have found some doctors may not like using certain pain medications because some may suppress coughing and in turn lead to more infections. At this point in my life, if pain medicines make me feel better and more active, I take them. My daily activities are what keeps my healthy. Allowing myself to be busy may assist towards a more productive cough rather than lying in bed and sitting up every 5 minutes to cough. In addition, I feel being active is god for your spirits, and that is half the battle!
Is My Pain Caused by CF, or Just Getting Old?
by Kathy Gunter
Brett has asked that I write a small article regarding pain associated with CF. When first asked to do this, my response was, "How do I know what pain is specifically cause with CF, vs. the plain old aging process?" Neither of us really knew the answer to that question!
As to the question of whether or not I experience daily pain, most certainly, I do. I have chest pains, body and join pains, headaches (usually sinus related), and various other nagging little complaints. The pain is only rated "severe" on a rare occasion. If that occurs, I usually make a trip to the doctor to rule out any complications, such as pneumothorax. If bleeding ever occurs during a cough, I do the same.
How do I treat my own pain? Very carefully! The reason behind this is probably my own paranoia. Years ago, we were told (as aging CF's) not to use Ibuprofen. To be honest, I can't remember the specific reason for that. Aspirin things the blood, and from personal experience, I have found that this can contribute to hemoptysis. Tylenol or acetaminophens is the typical drug of choice, however, if the pain is frequent, these use of this on a continual basis can affect liver functions.
That is also a concern of mine since I am now (by the time this is published) 31 years old. I try a little harder to take care of my precious organs that I know have taken years of abuse from the required antibiotics and other medications.
I have tried Vioxx and Celebrex. My blood pressure went up slightly, so this is not something that I feel comfortable with either. I suppose my bottom line is that I won't take anything lightly. If I can bear the pain, I do. That may or may not be the best answer, but maybe with all of our compiled information, the doctors can make an informed suggestion. Until then, I will be grinning and bearing it!
Do You See The Signs In Front Of You?
by Denise Miley
Hello, my name is Denise, and I have a 7 year old daughter, named Gin, with Cystic Fibrosis. I consider Gin to be a strong person. By that, I mean that she doesn't let CF keep her from enjoying life and playing sports that rob a lot of energy from her. She never complains of hurting, even though I can tell when she is experiencing a lot of discomfort. She never turns down the chance of being outside and playing. On the days when she is not "feeling well", she likes to stay in watching movies and usually letting me hold her. This is when I know she is beginning to get sick.
I am very proud of her, for her faith, her strong will, and never letting CF get her down. So if you have a child with CF, by now, you probably know the signs and symptoms that your child gives when experiencing episodes of pain or discomfort. The sign Gin gives is just "not feeling well."
Is the Pain Real?
by Donna Hovater
My sixteen-year old son, Cade, is very vocal when he experiences pain. If he feels it...you're going to know it! His pain has been primarily limited to sinus headaches caused by chronic sinus infections. Usually acetaminophen and decongestant medication, along with a nap, will make him feel better.
While on the subject of pain, I'd like to pass along a word of advice to parents. Most likely, the pain your child is voicing is genuine, and you'll want to take steps to relieve it. Watch for patters, however. If repeated aches and pains suddenly crop up before school tests or when homework hasn't been completed, your child may be taking advantage of their CF. While this isn't universal among CF children, many adults will admit to having "selective pain" situation at some time during their childhood. Parents may feel uncomfortable acting as "pain police", but if these events occur, talk to you child about the consequences of this behavior. Schools test and homework have to made up, and it's easy to get behind if many absences occur. If you're missing school or work unnecessarily, it will soon come to the attention of your teachers or employers. Discuss with your child the importance of cultivating habits that will lead them into happy, productive futures.