• Posted by Charlene Marshall on April 10, 2018 at 1:45 pm

    When you are diagnosed with a life-threatening illness such as idiopathic pulmonary fibrosis (IPF), much of your world suddenly revolves around your disease. It’s not uncommon for patients to become hyper-vigilant about how they are feeling physically and wonder whether or not new symptoms are linked to IPF.

    Since this disease progresses differently in each patient, there isn’t a standard treatment protocol that applies to every patient living with IPF, though the course of treatment might be similar (often including the eventual use of supplemental oxygen, anti-fibrotic medications and if eligible, assessment for lung transplantation). But due to the differences in progression and symptoms, patients are often left to figure out whether the new and unusual symptoms they’re experiencing are linked to their IPF. This was my experience this week, and the worry took a toll on  me.

    Below are some unusual symptoms that I’ve experienced over the past 12 days, which made me concerned that my disease was starting to rapidly progress. My concern led to an emergency room visit, an abundance of tests, and various medications. Thankfully, the symptoms have begun to subside, but I can’t help but wonder if they were more than just a virus.

    Persistent migraine
    Headaches are not uncommon for patients living with IPF, especially when their bodies are chronically under-oxygenated. That being said, I am lucky to have never suffered from headaches before or after my diagnosis. So to have a terrible headache that lasted almost two weeks (with varying degrees of intensity), and accompanying dizziness, jaw and neck pain, loss of appetite and extreme fatigue, made me worried. Intravenous medications alleviated the pain to a degree but unfortunately did not rid the headache entirely. I couldn’t help but wonder whether or not this was a sign of my disease progressing.

    Stiff joints and muscles
    In addition to the headache, I noticed extremely stiff joints and sore muscles this past week, sometimes making my morning routine nearly impossible. I always sleep with oxygen on so that my body doesn’t have to work hard to breathe through the night, which allows all my energy to go to resting and healing. Due to the stiffness of my joints and muscles, it almost felt as though I didn’t sleep through the night.

    Frequent dizziness
    One thing I have noticed recently is the increased frequency of dizziness, especially when changing elevation (such as sitting to standing). Thankfully this is brief and does not last long, but it’s enough that I’m uncomfortable changing elevation without someone around me in case I fall. This is not ideal for situations such as driving or while at work. Unless the virus that I’m fighting (according to the ER) has impacted my ears and thus my balance, I can only attribute the increased frequency of dizziness to a lack of oxygen as well.

    Nerve pain
    Thankfully this is not a common symptom, and has been managed through medications under the advice of a rheumatologist. However, certain elements cause this pain to increase and at times become unbearable. These elements include extreme heat or cold, and at times, when I’m completing tasks that require fine motor skills, I find the nerves in my hands become painful in certain joints.

    I do trust the ER doctor who assured me that the symptoms are not a progression of IPF. That said, I’m grateful that he ordered a head CT to ensure that this headache is nothing more than a virus, and that he put in an urgent request for my pulmonary doctor to follow up. Sometimes I wonder if I am being too hyper-vigilant but as an advocate for my own health, I am unsure which symptoms could be caused by my disease progression and which ones might be a virus or something else.

    Do any of you experience these symptoms on a regular basis, and have you been told that they are likely linked to your disease progression?

    Charlene Marshall replied 5 years, 10 months ago 1 Member · 0 Replies
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