I wasn’t feeling well two weeks ago after completely overdoing it in a heat wave and convincing myself that paddle boating was a good idea. (Spoiler alert: It wasn’t.) Feeling the need to take care of myself, I decided to accept defeat, cancel my plans for the day and resort to watching Netflix in my sweat pants. It was the release date of the Lady Gaga documentary Gaga: Five Foot Two, so I decided to watch it, knowing that her chronic pain would be highlighted briefly.
There is a scene where Lady Gaga is laying on her couch with only a towel covering her, tearfully asking if she looks pathetic. As she covered her face with her hands, I couldn’t help but empathize with her fear of looking vulnerable. This is a question I have asked myself throughout my PH diagnosis, and even during moments when I have experienced chronic pain.
The truth is I, too, have found myself crying because of chronic pain. It can be embarrassing, but unless you have experienced it, it can be difficult to imagine just how debilitating chronic pain can be.
I never had suffered from chronic pain until I was diagnosed with pulmonary hypertension. In fact, I had never experienced a headache or migraine until I was placed on tadalafil, a common PH medication that is known to cause headaches. According to the prescribing information, tadalafil also may cause pain in extremities, back pain and myalgia. Until I began taking this medication, I had no idea how truly crippling something like a migraine or chronic pain could be.
My doctors are not sure what is causing the pain I experience. Some have suggested I may have an undiagnosed syndrome, because of other issues I have (there was a short period of time when it was believed I had lupus), while others have mentioned that my PH medications could be the culprit as well.
PH patients may experience chronic pain because of a secondary condition often associated with PH (such as scleroderma or lupus), or from their medications (such as site pain associated with Sub Q Remodulin). Last year, I interviewed several young adults with PH about their chronic pain to discuss the possibility of a hidden drug abuse problem among PH patients. These interviews helped give me more insight into chronic pain within the PH community.
I suffer from nerve pain, which frequently contains itself to one thigh, where it feels as if I am being stabbed with a knife, or crippling sinus headaches. When it is widespread, it feels like all the nerves in my body are being electrocuted. I also have had a few trigminal neuralgia episodes, which started a year-and-half after my PH diagnosis. It was, by far, the most intense pain I had ever experienced, and unfortunately, over-the-counter painkillers do nothing for this pain.
Fortunately, my experience with chronic pain flare-ups have been mostly few and far between. But when I do experience an episode, it feels like the end of the world because finding relief is impossible. When experiencing chronic pain, there is not much I can do but stay in bed and hope the pain passes as I sob. Like Lady Gaga, I’ve often wondered if I look pathetic during these moments – a fear many of us with chronic pain or illness understand.
Watching Lady Gaga struggle with chronic pain reminded me of the importance of empathy and self-compassion. The moments where we struggle the most with chronic illness or pain are when we are in greatest need for compassion not only from others, but also from ourselves. Self-compassion empowers us to be patient and take better care of ourselves during a challenging time.
I hope to see more discussion about chronic pain among PH patients so we can help support one another through the struggles we may face.
Have you ever experienced chronic pain as a person living with PH? Please share your experience in the comments below. I would love to hear from you.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.