Things to Be Sure Your Doctor Actually Understands: Part 1

All pain scales are worthless to fibromyalgia patients. I’m making the mistake of sounding like I talk for everybody. I don’t talk for everybody. I talk for myself. Pain scales are worthless. There are many different types of pain scales: rate your pain on a scale of 1-10, show me what you think your face looks like, and other more complex yet equally useless scales.

Here’s the problem: for fibromyalgia, pain is a constant, not a symptom.

More appropriate questions to ask fibromyalgia patients:

  1. What is your baseline pain? For example, when asked that persistent 1-10 question, I always say, on a scale of 1-10 with 10 being childbirth and kidney stone… If there’s no point of reference for your worst pain ever, there is no meaning for the number you give.
  2. How would you rate your pain when you move? How would you rate your pain when at rest? Yes, they’re different. And if I’m sitting in the doctor’s office and they say what’s your pain right now, I will give a different number than I would have 30 seconds earlier walking into the office. Again though, there has to be a baseline. To many a nurse’s chagrin, I give them two numbers: Right now, sitting still I’m at a 4. If I get up and move around I’m a solid 8, with 10 being childbirth and kidney stone. I don’t care if they don’t have a spot on their worksheet for 2 numbers.
  3. How relentless is your pain? This is the key to fibromyalgia. It’s not the level of pain; it’s the relentlessness of the pain. That is what exhausts fibro patients. Once a psychiatrist who was trying to fit me out with an antidepressant told me he didn’t understand fibromyalgia patients. He will show a fibro patient all the different faces of the pain scale and ask them to rate themselves, 1-10 and they’ll say 12, but their face shows a 3. He didn’t understand that. I did. If you have pain at a level 3 for 78 days straight, you will rate your pain at a 12. It’s not the level of pain the patient is rating. It’s the relentlessness of the pain.

The first step for a doctor to understand and treat a fibro patient is to understand the pain. The only way they can understand the pain (since so many doctors are incredibly healthy) is for you to be able to express in clear terms what your pain is like. If they understand that you understand your own pain, they will listen better when you have a concern.

I hope it doesn’t happen so often anymore, but I had a near-fatal episode in 2002 when a doctor sent me home instead of investigating my complaints. He saw fibromyalgia in my records, his eyes glazed over, and he stopped listening, even when the nurses were all commenting on how terrible I looked. I had a massive pulmonary embolism and was going into heart failure. A week after he sent me home without proper tests, I was rushed to a different health care facility, and those doctors saved my life. In 2002 I was unable to express myself properly to make that doctor understand what I was experiencing was not normal. Almost 20 years later, I understand much better how to explain to doctors how I feel. When I’m in normal pain, I tell them yeah, it’s normal, I’m not worried about it. When I have a new incessant pain, I say, no this is not normal and explain why it’s not normal. It can take some persistence, and that means walking a fine line between standing up for yourself and being aggressive about getting care. As important as it is for them to listen to you, it’s equally important for you to listen to them. The best thing for your care is mutual respect.

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