Pain Scales

A 1-10 ranking is the best way to express the severity of the pain, but it’s so subjective that I frequently question my own ratings. Is an 8 this week the same as it was a year ago, or even a month ago? How can I rate a headache higher than 9? Can my pain really be a 10? Am I tempting fate by rating a migraine 10 — couldn’t the pain get worse than it is?

The American Chronic Pain Association and The International Pudendal Neuropathy Association both offer great pain scales. I particularly like the one from TIPNA, so I’ve included it below.

Perhaps more important that using one of these pain scales is to create your own Everyone experiences pain from their own perspectives, so a scale can be highly subjective. Having your own scale helps identify the pain relative to recent months or years. It’s also helpful to share your own scale with your doctor, who may then better understand what you’re going through.

Interestingly, a doctor that I’m friends with told me that ER patients tend to rate their pain as a 3 or a 10. This may contribute to the skepticism headache sufferers encounter in the ER.

Comparative Pain Scale (from TIPNA)

0: No pain. Feeling perfectly normal.

1: Very mild = Very light barely noticeable pain, like a mosquito bite or a poison ivy itch. Most of the time you never think about the pain.

2: Uncomfortable = Minor pain, like lightly pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails. (Note that people react differently to this self-test)

3: Tolerable = Very noticeable pain, like an accidental cut, a blow to the nose causing a bloody nose, or a doctor giving you a shot. The pain isn’t so strong that you can’t get used to it. Eventually, most of the time you don’t notice the pain. You’ve adapted to it.

4: Distressing = Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma like stubbing your toe real hard. So strong that you notice the pain all the time and can’t completely adapt. This level of pain can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails and squeezing really hard. Not how the simulated pain is initially piercing but becomes dull after that.

5: Very distressing = Strong, deep, piercing pain, such as a sprained ankle when you stand on it wrong, or mild back pain. Not only do you notice the pain all the time, you are now so preoccupied with managing it that your normal lifestyle is curtailed. Temporary personality disorders are frequent.

6: Intense = Strong, deep, piercing pain, so strong that it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad non-migraine headache combined with several bee stings or a bad back pain. (The person who posted this scale on the forum said that her migraine diary indicates this as her average pain on most days. I reach this level almost every day, but usually rate it a 3 or 4.)

7: Very intense = Same as 6 except that the pain completely dominates your senses causing you to think unclearly about half the time. at this point you’re effectively disabled and frequently can’t live alone. Comparable to an average migraine headache.

8: Utterly horrible = Pain so intense that you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a real bad migraine.

9: Excruciating unbearable = Pain so intense that you can’t tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn’t work, suicide is frequent since there is no more joy in life whatsoever. Comparable to throat cancer. (It’s scary to think about, but this was me for at least a year before I got my stimulator. Thus I was willing to give up a lot of money and mobility for an unproven treatment.)

10: Unimaginable unspeakable = Pain so intense that you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident, such as a crushed hand, and lost consciousness as a result of the pain rather than the blood loss, have experienced level 10.


Chemistry Can Induce Sleep

If your headaches cause you to lose sleep, a sleep aid may be an invaluable med to add to your arsenal. Not only will you sleep better, your better sleep might reduce the frequency or duration of your headaches.

The Mayo Clinic provides an excellent summary of the available sleep aids, including their side effects, precautions and warnings.

Kitchen-Based Medicine

Instead of letting fibromyalgia force her out of the kitchen, Jennifer Hess revamped her approach, making cooking and eating a medicine that treats her physically and mentally. In her Chronic in the Kitchen series on ChronicBabe, she kindly shares lessons that she’s learned and some delicious recipes.

Jennifer broke the recipe-following rules when she developed her
recipes — follow her lead! If an ingredient is a known trigger for
you, make a substitution. Black bean soup made with garbanzo beans?
Chives instead of onions? The first few incarnations may be strange,
but you’ll eventually get a recipe that’s tasty and doesn’t invoke pain.

Avoiding Sausage Headaches
Two of Jennifer’s recipes use sausage, which can spell trouble for people with headache. Because it’s so tasty and easy to use, I’ve searched far and wide for sausage that doesn’t trigger headaches. Here’s what I’ve learned:

Always check the labels and try to avoid varieties with nitrates or any form of MSG. Trader Joe’s, Whole Foods and Wild Oats all carry brands that fit the criteria or come really close. Many stores in the Safeway family (which includes Von’s, Dominick’s, Randalls, Tom Thumb, Genuardi’s and Carrs) also carry some varieties.

Brands that taste good and aren’t filled with junk include Applegate Farms, Cantella’s, Gerhard’s and Organic Prairie. Again, check the labels. One variety of one brand might be fine, but another sausage by the same company may contain MSG.

Also, a little bit of a “bad” additive might not cause problems for you. Try it out when you feel brave.

Hope and Headache Clouds

I’ve been thinking a lot about the question that I posed on Monday: How would you represent hope visually? It’s a tough one. I’ve looked at the pink blossoms of the cherry trees and the bulbs that are starting to sprout. I’ve admired our amazingly sunny days and the promise that when the rain returns, it will bring even more flowers. These are all unmistakable symbols of hope, but still don’t capture my experience.

When I stopped looking so hard for it, the answer was obvious: clouds. After living in Seattle for a year, I realized that one of the ways I cope with all the rain is to notice the ever-changing clouds. Their colors, density and position in the sky take dramatic shifts throughout each day. Unless the sky is a uniform gray, there’s always something to admire.

Like the clouds, sometimes my pain is light; other times it is unbearable and accompanied by a host of other symptoms. The changes occur from day to day, but also from hour to hour. Even on these days, I catch glimpses of blue sky; there’s always something to be thankful for, something to enjoy.

Plenty of my days are perfectly described by the dense, dark gray overhead. I’ve become grateful for the variations in my headache clouds. They give me hope that headaches won’t destroy my joy. Even if I have a headache every day of the rest of my life, the subtle changes within a day make me appreciate every moment I have.

(P.S. My questions wasn’t rhetorical, but I know the answer isn’t easy to find. If you have any thoughts about your own or some general symbols of hope, please share them in the comments. Other readers and I value what you have to share.)

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Annual Meeting on Pain

The American Academy of Pain Medicine‘s 22nd annual meeting begins tomorrow. Topics include FDA regulation of pain treatments, advocacy issues and alternative therapies for treating pain.

Could be good stuff. I’ll let you know what comes out of it.

I’m a Babe!

A ChronicBabe, that is. The latest LadyBlogger profile is a Q&A with yours truly. You can also learn more about fellow headache patient Tracy Young, from Moogle’s Thoughts, who was a featured LadyBlogger in December..

Digging around for photos to go with the profile, I was reminded of how active and joyful I’m still able to be. The picture of me rappelling into a cave is definitely one of my visual representations of hope. It shows not only a triumph over illness, but a triumph over my inner chicken.

Seeing Hope

Hope inspires patients, families and physicians to persevere in even the most dire of circumstances. An elusive idea, hope is a powerful tool for healing.

University of Washington photography student Sarah Skinner sought to capture this concept the way she knows best. She gave a trauma surgeon,a patient’s wife and a patient cameras to make hope “visible through the eyes of those who inhale it, as much a form of life support as supplemental oxygen.”

All three photographers captured very different images of hope: a child, flowers, skyscapes. How would you represent hope visually?