Questions I Hate: Pain

Pain.

“On a scale of one to 10, with 10 being the worse pain you have ever felt, how bad is the pain?”

This question always annoys me, because the truth is, it is impossible to compare pain A with pain B, at least for me. It is also impossible to truly remember pain.

So, for example, I remember that the birth of my younger son (the older one is adopted) was probably the worst pain I have ever experienced. But I don’t really remember the pain. I just remember that it was excruciatingly painful.

I am not making this up. Human beings do not remember pain. (Read more.)

So why do they ask us to?

I get the “pain question” fairly often because I live with pain. My pain is caused by the bone mets (tumors in my bones, where my cancer spread from its original site in my breast. A medical note: these tumors are not bone cancer, they are breast cancer tumors that have metastasized).

I also have pain as a lingering after-effect of all of the chemotherapy that I have had, or so my doctors tell me.

The trick for me, and for my doctors, is to distinguish pain that means something (i.e., cancer progression, danger of a fracture) from my routine, garden-variety, background pain. And of course, I can have pain for other reasons, like arthritis in my neck, that is not significant, at least not significant as far as my cancer treatment is concerned.

Twice now in my life with cancer, I have had significant pain and not realized that it meant a tumor had broken a bone. Partly, I think, I didn't realize because I have a high pain tolerance. And partly, perhaps, because it is just so hard to tell.

Yes, it hurt, yes, it really hurt, but I didn’t realize that what I was feeling was a broken bone. Broken by a tumor.

The first time, my upper right arm was broken by a 5-centimeter tumor at the time my cancer first metastasized to the bone. I knew that it hurt, but I thought it was a soft-tissue injury.

The second time, just a few months ago, I had a broken rib and didn’t realize it. Again, I knew I was in pain, but I thought the pain was caused by exercise. I had been paddling regularly with a dragon boat team, and I had a lot of new aches and pains as a result, especially in my back and neck.

We didn’t find the broken rib until after it had already healed, when it showed up on one of my routine scans. My oncologist said it could have broken as a result of paddling, or all on its own. Argh.

So now, since the thought of walking around with undetected fractures gives me the willies, I am especially vigilant about checking out new pain.

This lead to an (emotionally) painful comedy of errors with the doctor I saw briefly (a total of two visits) at the Seattle Cancer Care Alliance after Dr. Livingston left for Tucson and before I changed cancer centers (more on that to come).

I told the doctor that I had new pain and tingling down my right arm that seemed to be coming from my neck, which also was hurting, and I had pain in my back. Since I know I have several tumors in my spine, I wanted to make sure things were OK.

Without going into all the weird twists and turns of the conversation, the doctor told me three or four times, “I can’t scan you every month,” and sent me off to see a psychiatrist, because she was convinced that I was there to see her because I was anxious over the departure of Dr. Livingston.

Well, yes, I was anxious, but more anxious at that point about not having a doctor who would LISTEN to me than about the fact that Dr. L had left.

Cut to the chase: When I changed doctors, and told my new doctor about my symptoms, she sent me for MRIs.

These showed that the tumor in T-11 in my spine was bulging out of the bone and moving toward the spinal cord. So I did a series of 14 radiation therapy treatments to my spine to take care of this.

I shudder to think how long it would have been before the Doctor Who Doesn’t Listen would have noticed this one. Would it have been in time to prevent me from being paralyzed? (Fill in expletive of your choice here.)

Obviously, it is important to be able to describe pain. And, as I mentioned, the old 1-to-10, “Ten being the worst pain you have ever felt” scale doesn’t work for me.

So I am proposing a new pain scale. I could use some help filling it in, so please e-mail me your suggestions.

10 Rolling-on-the-floor, screaming, can’t-think-of-anything-else pain; e.g., childbirth

9 Impossible-to-ignore pain; e.g., a broken arm or leg

8

7

6 Keeps-you-awake-at-night, can-ignore-during-the-day pain; e.g., Jeanne's typical bone pain

5 Throbbing, constant pain; e.g. bad tooth ache

4 Only-notice-when-I (fill in the blank) pain

3

2

1 Hangnail pain

The scale may not need ten steps. I’m not sure I can describe pain in ten different ways, and having ten steps is pretty arbitrary anyway. Send me your suggestions, the funnier the better.

Here's a final one: Only hurts when I laugh. Is that a 2 or a 3?

@ Jeanne Sather 2007

Comments

[Laurie Fronek]

It's true the standard pain scale can be tricky. I write health materials for the general public -- most recently, pain mangement articles for a forthcoming Web site designed to inform and support family and friends caring for someone near the end of her life. I'm also a massage therapist, who was taught to use this scale with clients, and a massage instructor, who talks with students about how to use it in their practices.

When you're sitting there in pain, it can sometimes seem silly and even annoying to have someone ask you to assign the feeling a number. And you're right, there are questions about whether we remember pain well enough to make meaningful comparisons between painful events separate by time.

But since there's no device for objectively measuring a person's pain, the best thing we can do is ask her about her perception of it. In a way, all that matters is how bad it seems to her at the moment when she's answering. If she says it's an 8, then we (massage therapists, doctors, other health care providers, family caregivers who are dispensing medicines, and so forth) need to get the message that her pain is pretty severe and act accordingly to help her get relief.

If she could truly remember what childbirth was like, would she still rate today's pain an 8? Maybe not. But the point is to deal with her pain as she perceives it right now.

In any case, I LOVE your much more descriptive version of the scale and look forward to seeing what other readers suggest!

[Jeanne]

Laurie--thanks for giving us the view from the other side.

And in future, I won't worry so much about making any kind of exact comparisons to past pain--I'll just shout "10!" when it really hurts!

Jeanne

[Lisa]

I hate pain scales. I sometimes laugh now at the numbe rof times I have asked my patients (before I only took care of patients who are too young to talk to rate their pain) I now think of things differently. The other day my doctor informed me that my type of cancer tends to metastasize to the spinal cord and to be very aware of any back pain. Great info to give to someone with chronic bak pain. I can just see myself, a- blowing it off of b- freaking out every time I throw my back out. Oh joy oh joy

[Jeanne]

Lisa--I tend to alternate between blowing off my pain and freaking out about it--sometimes within the same day or hour! The reality is, I have to get it checked out, every time.

Jeanne

[Jeanne]

A friend, Beryl Gorbman, e-mailed me her detailed version of the pain scale:

1 – pinprick – temporary and annoying. You avoid it. Like getting an uncomfortable injection.

2 – annoying low-level discomfort like a light headache. Distracting, not disabling.

3 – Tylenol level. Ongoing, annoying, uncomfortable, like a dull headache.

4 – bad enough to make you say “ouch” and do something time-consuming about it, like apply heat or cold. Like strained muscles or a bad scrape from a fall. You pinch yourself hard to make it hurt worse somewhere else.

5 – Ongoing and oppressive. You know you need to see a doc. Somewhat disabling. You are unable to focus or read. You take lots of Tylenol and don’t clean your house or cook.

6 – Hurts enough to prevent you from going to work or pursuing any normal activities. Impedes movements, keeps you awake at night. You shuffle through your medicine cabinet for old codeine pills or whatever. Like a really bad migraine.

7 – Total inability to sleep, needs meds stronger than Tylenol, makes you long for unconsciousness. You think of little else.

8 – Acute, intolerable pain that requires immediate medical attention, like a deep cut or sprained ankle or the kind of toothache that hurts when air hits it. You are consumed by pain at this level and can think of nothing else. No matter how reluctantly, you actively seek medical attention.

9 – unrelenting acute pain so bad you chew on pillows, cry, writhe and yell. Begging docs to do something. You wonder whether anyone has ever hurt as badly as this. Like childbirth or a bad burn or dislocated joint or deep bone pain.

10 – screaming for narcotics, close to losing consciousness, truly unbearable, acute, wish-you-were-dead pain. Pain so bad the human body is not meant to take it and you are stretched beyond all boundaries.

[Jill Cohen]

Hi jeanne,

Just catching up on your blog and thought I would say that although I have not experienced childbirth, when I broke my leg in a pathological fracture due to metastases from my breast cancer, it was absolutely a #10 on your scale -- except that if I rolled on the floor, I would have passed out from the pain. As it was, I made the ambulance drivers go 5 miles/hour over city streets instead of taking the highway so that I would experience the most minimal discomfort when they took me to the hospital.

Keep up the great blogging!

[Michael Boy]

Unfortuntely I've also experienced the upper levels. Good news I'm still here, bad news it ratchets the tolerance another notch, so much for 'worst', moving target.

#11 - pardon me, I have been screaming at the top of my lungs, can't even move, and have thankfully passed into unconsciousness, get back to you later

[Jeanne]

Michael--thanks for extending the scale, and sorry that you are experiencing such pain. Really sorry.

I was in Tucson last week to see my long-time oncologist, and as his assistant was doing my vitals, he asked "the pain question." I didn't even blink, or spend any time thinking about it, I just said, "Oh, a three or four." It's a meaningless question, and I wasn't there to talk about my pain anyway.

Sigh.

Jeanne

[Lisa]

I have never blogged before so I may not be enteringédoing this correctly. Not entirely sure how I see the replies.

I am hoping someone out there can provide some info.

I was diagnosed last year at 46 with Stage 2B BC and underwent a MRM with TAC chemo (sailed through) and radiation (not so great). 1 month after chemo (and before I started (Arimadex/Zolodex)I started experiencing significant pain in all my joints - some days worse than others. It is now constant even with Celebrex. I can sleep at night but have to move regularly as my hips and shoulders ache.

The doctor mentioned chemo induced arthritis but none of the books or sites I have checked mention this as a chemo symptom. Obviously, my concern is that it could be metastatic desease. What I am looking for is:

1) More info on Chemo induced arthritis, if there is such a thing. If there is, why is there so little info out there and why did my doctor not mention this as a possible side effect with all the others that were listed....

2) Since the Celebrex does not appear to be working is are there other things I could try.

3) Has anyone else out there experienced this and can they recommend anything that might help the pain. The idea of spending the next 30 years in constant pain is not a pleasent thought.
i.e. Would exercise help or make it worse - quite frankly the thought of exercising with the pain is not a welcoming thought but I am willing to try anyhting to improve.

[jeanne]

Lisa--part of this I can answer. I also have bone and joint pain caused by chemo. Exercise helps, rather than hurts, in my experience.

If your pain meds aren't working for you, please talk to your doctor about that. I take a combination of two drugs, naproxin and another one that I can't spell off the top of my head, and that works for me most of the time but they are hard on my stomach.

Another thing to consider is accupuncture. Ask your doctor/insurance co. whether or not accupuncture is covered if you have a prescription.

Good luck with getting this under control.

Jeanne

[Becky]

I have have broken ribs and do not know how they broke. Now I have constant upper right abdomen pain that hurts more sometimes after eating. I have very ternder shins and very painful ribs in the back. I have had ultra sounds CT scans to no answer. That is how I found out that I had 4 broken ribs at heart level 2 per side healing. I wish someone would figure out all this pain. I take vicondin or ultran. The ultram give me bad headaches. The vicodin barely helps the pain at all. I need to know what is wrong with me. I am over weight. My feet bones hurt on the top of me feet too. Feeling broken sometimes.