A few days ago, Christine Miserandino of ButYouDontLookSick.com posted (reposted?) some thoughts about the ways we describe our pain
. Or I should say, the ways we are asked
to describe our pain.
If you’ve had cancer pain or arthritis pain or lupus pain or migraine pain or any of a number of different kinds of pain, you know what we’re talking about. Often it’s a scale of 1 to 10.
And various commenters have expressed their frustration with this scale. For example, what if you put a 10 one day, and then find that the pain has gone right off the scale the next day?
I avoided this problem early on by saying that 10 was a “theoretical impossibility” – that I would actually pass out if I were in that much pain. But that didn’t keep me from pushing the scale and adding a 9.5 more than once!
Then there’s the almost useless Headache (Yes) (No), or do you feel (GOOD) or (BAD) . . . which I’m afraid makes my life look worse than it is!
Most doctors should be well aware of the limitations of these scales. It’s mostly just a way to see if things are improving or getting worse. And numbers are of course the easy way to measure over time, with all their limitations.
But don’t forget that there are various ways of measuring. As you fill in your headache diary, or prepare to visit the doctor, here are some things to think about.
The Number Scale
This is the most common, usually 1 to 5 or 1 to 10. Also, especially in the case of children, this scale may be translated into faces that look very happy or very sad.
Remember, the most important thing is to compare your pain this time to your pain at other times.
Also, it’s important to know what exactly you’re measuring. For example, you might measure just pain, but that would by no means tell the whole story if you’re having a migraine attack. You could say you’re measuring overall “discomfort” from all your symptoms, or disability.
Mild, Moderate, Severe
This is another one that can easily be translated into numbers (1, 2, 3). Again, be aware what you’re measuring. Symptoms overall? Just pain? Disability?
Using adjectives to describe headache is very important, because different types of pain can indicate different types of headache and causes as well. Here are a few to get you thinking…
Remember, you can use adjectives to describe other symptoms as well.
Some headache diaries specifically mention major symptoms. The most common would be nausea. Do you feel nauseous? Did you vomit?
I’d rather not even answer that question in the middle of an attack, but it is very important to be aware of the symptoms that you have that aren’t headache.
For example, nausea, sensitivity to light, noise, smells. A feeling of heaviness. Fatigue. Stiffness. Weakness. Numbness.
To think this through, check out What is Migraine? (the Story of Symptoms)
Location(s) of Pain
It’s very common for migraine diaries to include questions about the location of the pain. One sided? Behind the eyes? Back of the head?
This is another very important clue about where the headache is coming from and how to treat it.
But something that is often overlooked is pain in other parts of the body. Neck, feet, stomach – make a note, even if it doesn’t seem to be related to the headache.
How it Affects Your Life (Disability)
More and more, researchers and doctors are looking into the actual disability that is a result of headache conditions. They may use fancy tests to measure disability over time, or just ask you how often you’ve missed work or school.
Of course the more specific you can be, the better. You may go to work to make an important presentation, when you otherwise would have stayed home. You may work every day, even though some days your productivity is half of what it is other days.
Jotting down the decrease in productivity on a diary, even using yet another 1 to 10 scale, may help you have a better idea what your symptoms are doing to your life.
“Type” of Headache
When I was younger, I noticed that my attacks seemed to fall into various categories. These were a mix of symptoms. For example, maybe a throbbing, inflamed headache where I became very irritable, as opposed to a piercing headache where I was nauseous and very sensitive to light.
Some people do have attacks that are very similar, for example a menstrual-related headache versus a headache other times of the month. If your attacks don’t seem to regularly fall into “types”, this will be too simplistic for you.
What other ways have you measured your pain/symptoms/disability for yourself and/or your doctors? We would love to hear your tips. Remember, the better we can record and communicate these things, the better we can help ourselves and others with similar symptoms.