November 8, 2018 at 9:12 am #15201
Lately I have been taking what-feels-like excessive sick days both from work and from my day-to-day activities as well. Since being diagnosed with idiopathic pulmonary fibrosis (IPF) two and a half years ago, it has taken me some time to accept that I have to prioritize the needs of my body and slow down or rest when I need it. If I don’t, our bodies have a funny way of making us do this whether we want to accept it or not.
The most difficult thing I’ve found about being sick as a patient with a life-threatening lung disease is not simply having one known/common symptom that others might have when they call in sick. Let me explain further…
When you’re a kid, a pretty significant indicator of having the flu is nausea and vomitting. However, this has become a common symptom I deal with as a patient living with IPF, and no amount of gravol or anti-nauseant medication seems to make it go away. It also doesn’t always mean that I am contagious and need to stay home, it could be medication-related but the problem is that I never really know. Recently I experienced terrible stomach pains that kept me in bed for days. They weren’t causing nausea or vomitting, it was more like I was having hunger pains and hadn’t eaten in days. However, this wasn’t the case because I’d eaten very healthy that day. Maybe I didn’t eat enough? I’m really not sure. Here are some other common symptoms, side effects or ailments that I’ve been dealing with as of late:
- Frequent headaches with accompanying neck pain: the intensity of these can put me in bed for days. I have never experienced these before, so I’m unsure if I am becoming prone to migraines, or if the headaches are weather, temperature or barometric pressure-related.
- Debilitating fatigue: I know this is a common symptom of IPF, but I can no longer fight back against it and simply need to rest my body and brain when they’re tired.
- Muscle, nerve and joint pain: particularly in my feet, hips and upper back muscles. Sometimes this pain is so intense that I just need to lay down for awhile.
- Chest pain / tightness: also a common symptom of a chronic lung disease due to the nagging cough and struggle to breathe, however, this seems to be getting worse and happening more often over the past few months.
In summary, what I have come to realize is “I’m sick” becomes really complicated when you’re living with a chronic illness, like IPF, because you can be experiencing so many different things. Not all of these things are relatable from our healthy friends/family members and thus, people don’t always understand when you need to take yet another sick day from work, school, social plans, etc.
Can you relate to this?
How many of you have been questioned about really being sick when you can’t verbalize how complicated “I’m sick” can be as a patient with IPF/PF?
November 26, 2018 at 11:06 am #15435Chuck HarrisonParticipant
Hi Charlene , Chuck Harrison here,
What you are describing has been with me for a more than a month now ! It’s ,madding , I feel I have no control over these side effects whatsoever . I try powering thru them but to no success . It is hard and exhausting just to write . I nap , and nap , then sleep all night .the pain in my joints is driving me nuts , I always feel I’m coming down with the flu , aches and pains . This is not easy I feel the progression !
November 27, 2018 at 10:31 am #15443
Thanks so much for writing and letting me know you can relate to these struggles, although, I am so sorry you can! I sure wish it was a different reason that we’re all together on these forums. That said, I so appreciate it when others connect back and let me know that I am not alone in how I am feeling.
I completely agree with you, these things are maddening; especially when there appears to be nothing we can do to reduce the symptoms described above or make them go away. Powering through the fatigue used to work for me too, but now I am definitely noticing a difference as this is becoming significantly more difficult. It’s exhausting! Have you found anything helpful for the joint/muscle pain? I am going to post about something that has really helped me. Of course I can’t endorse it, but I can share my experience that an essential oil pain reliever cream has made for me in hopes that it helps others. My doctor also told me drinking tons of water will help “lubricate” the joints and reduce the pain, but then I don’t have the energy to be going to the washroom all the time. The saga continues….
Wishing you nothing but the best and thanks again for connecting, it is so nice to hear from you!
November 27, 2018 at 7:35 pm #15449Chuck HarrisonParticipant
Hi Charlene , for joint pain I just use aspercream it helps !? My doctor recently started me on morphine ( not a big fan ) I don’t use it a a lot . Tell me what do you know about cbd oil , I ask because you seem to have your finger on the pulse of different things . Yea/nay ? .
Charlene I do have to tell you I’m not a down hearted person , actually I’m quite a happy man ?.i know what I have I know the end result , but I refuse to wallow . For instance , a horse walks into a bar and the bartender asks ” why the long face ? ) I’m that kinda man . What bothers me is the lose of the use of my body . You see I have terrible tremors that came out of nowhere , so much for woodworking . I am terrible over medicated ( not happy ) prone to right ventrical heart attack , lots going on , a fifty foot walk can be a real accident waiting to happen . Even though all this is going on I’m a happy guy ! Go figure
So much more to write Charlene !
Your friend from the states
December 2, 2018 at 8:41 am #15489
Thanks so much for your reply, and sorry for the delay in getting back to you – my weekend was filled with birthday festivities so I wasn’t online much, which was actually kind of nice 🙂
I don’t think I’ve heard of aspercream, is it just a topical pain reliever ointment? It might be something we have here in Canada just under a different name. I’m glad it helps, as I don’t think I’d like the morphine either! Regarding CBD oil, this is definitely a “hot topic” for discussion as people really are inquiring a lot about how it helps them. Some people swear it makes a huge difference for them, and I’ve witnessed this personally. A friend’s Mom is on hospice care for metastatic cancer and she couldn’t eat, was in so much pain and had a hard time sleeping. She tried the CBD oil sublingually (under the tongue) and is an entirely different person! Her appetite has returned, her pain is better (not gone of course) and she is finally able to be resting properly now too. I know this situation is different than those of us with IPF/PF, but perhaps it would help? Some members of the forum wrote that it didn’t help them, and they needed to adjust their dose before they had any positives and yet others say it is very helpful. Do you think you’ll try it?
I really admire your attitude about all of this and your approach to living with IPF, positivity (although difficult at times, I certainly understand that) can go a long way in our ability to cope with this disease. I will continue to write for sure, as it really helps me also!
December 7, 2018 at 7:33 pm #15564Faye MooreParticipant
Hello Charlene, unfortunately I also can relate to this, I am 47 years old, was diagnosed with pulmonary fibrosis 3 years ago. Just 4 days ago while at work I thought I had heartburn, trying not to make a big deal of it, but I hardly ever get heartburn and it really hurt, so fast forward, after a few hours of working, I end up in ER with a collapse lung caused from coughing to hard! Ughhhh I hate this disease
December 9, 2018 at 3:05 pm #15586
Thank you so much for writing and sharing a bit about your experience, although I am so sorry you can relate! I also hate this disease, it is so cruel and unfair, isn’t it? Sorry to hear of your early diagnosis, like me it seems there is no definitive target for IPF, it comes after both young and old. So sorry to hear about your collapsed lung from coughing, that is terrible and it must have been so painful! Has your place of employment been supportive with your needs since this happened? I sure hope so. I will be more mindful of the feeling of heartburn potentially being more, thanks for sharing that awareness piece for me. Are you feeling any better now?
Thinking of you!
December 16, 2018 at 7:38 pm #15688Faye MooreParticipant
I am feeling Much better, thank you for asking, And Yes, my workplace has actually been very helpful and understanding of my PF, I am lucky.. it’s amazing how our bodies can heal so fast on some things like my collapse lung, but yet that same lung Can Not get rid of all this scaring to help me stay alive. ?
December 18, 2018 at 8:38 am #15703
Thanks so much for getting back to me, and providing us with a little bit of an update on how you’re doing. Really glad to hear you’re feeling better, and that your workplace has been helpful and accommodating when it comes to your IPF. That is wonderful news, and probably alleviates the stress/worry about disclosing your disease in the workplace. I am happy for you and hope this continues! Yes, the body can certainly be miraculous in terms of what it can do, can’t it? However, when it comes to repairing itself from damage (ie. fibrosis within our lungs), I certainly wish it could do more to help rid this disease. Hang in there and take it one day at a time. Feel free to reach out and connect anytime!
Warm thoughts to you,
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