I think many doctors think of pain as a generic term, a sensation we can rate on a scale of 1 to 10. When they say that 10 is the worst pain you’ve ever felt, I believe they’re thinking in terms of a “normal” person’s pain, not chronic pain.

Those of us with fibro have a totally different pain scale. It seems to me there should be a better way to let our doctors know what our pain is actually like. Following are some suggestions.

Keep a pain diary or journal. This would be a daily accounting of what your pain is like, something in black-and-white that can give a better overall picture. Helping your doctor identify patterns, especially if your appointment happens to fall on a low pain day, would be helpful in providing that clearer picture. You could set up a spreadsheet of sorts, or even use an app that will remind you to add an entry. 

Another idea is to find more descriptive words to define your pain. Words such as aching, burning, cramping, dull, piercing, pinching, shooting, stabbing, tender, tingling, throbbing — you get the idea. The more descriptive you can be, the better. 

Be specific about how your pain is impacting your daily life. Does it affect your ability to work or maintain your relationships, or impact your self-care? Does it limit your ability to focus, drive, socialize, exercise, or even get out of bed? How does it impact your parenting, chores, and ability to cook healthy meals?

Define what the number on the pain scale means to you. For example, you could say that a “5” means the pain is distracting, but not unmanageable. A “6” might mean you need to take medication to get some relief. Be as specific as you can. 

I would encourage you to bring someone with you to back you up; I bring my husband every time. It’s also a good idea to have your companion take notes, as we often don’t remember everything that was said. 

Living with chronic pain is different for everyone, so be aware of what it is like for you, and never be afraid to advocate for yourself. 

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Note: Pulmonary Fibrosis 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 Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.