TOUCHED BY LYME: How the “pain scale” inflicts even more pain on children
Children with Lyme disease experience many different kinds of pain, which don’t always fit neatly into categories on a medical chart.
When my then-13 year old daughter was, out the blue, struck down by unremitting, body-wide, disabling pain in her legs, ankles, feet and back, we’d barely heard of Lyme disease and had no idea that’s what we were dealing with. So, like other families in such bewildering circumstances, we began what felt like a forced march from primary care doctor to a variety of specialists, with regular side-trips for lab work, x-rays, scans and other procedures. The tests all came back “normal.” Pain medications didn’t help. The doctors eyed us warily, because we didn’t fit into a neat diagnostic category, and we were shuffled off to the next specialist on the list.
After our second or third go-round, I noticed an alarming pattern. After we’d filled out some kind of a questionnaire about symptoms and medical history, my daughter would be asked to rate her pain on a scale of 1 to 10, with 10 being “the worst pain you can imagine.” She’d promptly reply “10.”
Nurse: “Oh, no, dear. Ten is the worst pain you can imagine. You’re not a ten. Maybe you’re a six.”
She: “10.”
Nurse: “Sweetheart, you’re not a ten. Ten is the worst you can imagine. Like childbirth, or getting hit by a car.” (As if my 13 year old had a frame of reference for that?)
At that point, I’d see my daughter shut down in frustration. Here was one more adult who didn’t believe her. Sometimes, I’d try to intervene.
Me (to nurse): “You know, this is the worst that SHE can imagine.”
Nurse (to me, coldly): “I want to hear from her, not you.”
Although the nurses and doctors claimed they wanted to hear from her, they wouldn’t accept HER opinion of how she felt. They had a preconceived notion of what each of those numbers one through ten meant and they wanted corresponding data points they could put on a chart.
The first time that happened, my daughter turned to me later and plaintively said, “Why did she even ask? Why didn’t she just make up a number?” That was something we’d wonder many times over our months of visiting doctors, trying to find out what was wrong.
When we finally landed in the office of a Lyme-literate MD, to our relief he didn’t ask about the dreaded pain scale. My daughter said he was the first doctor who listened to and believed what she told him. It was the first time things seemed like they had a chance of getting better.
Other parents of children with Lyme report similar experiences. Here’s the mother of a girl who at age 14 developed foot pain in both heels and bottoms of her feet:
“She couldn’t stand or walk around for more than 20 minutes or it would be too much and her feet would ache for days. The doctors assumed it was plantar fasciitis and had her do stretches. She bounced around to several doctors, who never suspected a tick-borne disease. Many of them asked her about the 1-10 pain scale and she always had a really difficult time describing her pain or giving it a number. I guess because she was young and had never experienced a similar pain to compare it to. And they would ask, is it sharp pain, burning pain, throbbing, or tingling? And she would always say ‘I don’t know.’ ”
And the mother of a child whose troublesome symptoms began at age five: “I was told that the eye pain was because she was in kindergarten and starting to read, the joint pain was growing pains, and the fatigue was just her talking and getting attention or being lazy and she needed more exercise.”
Three years later, the girl’s symptoms and pain intensified. “They mentioned psychiatric stuff and took her in a separate room to ask if this was attention getting because maybe she had been molested (their theory). They said to wear supportive shoes. They gave her no good pain meds. They offered ibuprofen….She was supposed to go to a special study for children with inexplicable pain (since she absolutely positively could not possibly have Lyme because it doesn’t exist in California) but somehow that never happened.”
I am in the process of writing a comprehensive article about children with Lyme disease and their experiences with pain. If you are willing to share some experiences with me for use in the article, please email me directly. I won’t identify you in print, but please tell me your name so I’ll know who I’m corresponding with.
Here’s what I’m looking for: how old was your child when the pain started? What kind of pain? Did any particular treatments help? When you first took your child to the doctor for the pain, what kind of response did you get? Did the doctor take your concerns seriously? What did the doctor say was likely causing the pain? Was your child ever asked to “rate” the pain on a scale of 1-10? If so, what was your child’s experience with that?
Based on your responses, I may send a follow-up email with additional questions. Please put “child pain” in the subject line and email to: dleland@lymedisease.org
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
My (then 7 year old) son’s worst pain initially was in his eyes but he had intense pain in what seemed like his entire body.
At one point he described the pain was as if “someone poured boiling water on his brain”.
It’s still painful for me to recount that specific experience and his entire experience with tick-borne disease in general.
My daughter was twelve years old, enjoying sixth grade; all of a sudden, in February 2006, she became very ill. She said it felt like the worst flu imaginable. Dr.’s I took her to in the following 12 months, even Infectious Disease specialists) had no idea what was wrong with her. She would keep trying to go back to school but was always sick. Her Lyme manifested itself with symptoms of extreme fatigue, dizziness, nausea and migrating aches and pains. She had three different pediatricians, during these months who sort of threw up their hands and told me she was “just depressed”. She never had much luck with the 1-10 pain scale, always dreaded it. How is a kid supposed to know about rating pain, plus, many kids with undiagnosed Lyme “get used” to feeling crummy all of the time. She was diagnosed with Chronic Fatigue Syndrome and it wasn’t until I took her to Lyme-literate Dr.’s that she began antibiotic treatment; also treatment for Babesia. She was unable to attend school, which meant she became isolated without friends, very lonely. After doxy, azithromicin, bicillin injections and other antibiotics and herbs she began to feel better, but the dizziness never left her until 2013. She was never able to attend high school or get a job. She now attends community college, taking two courses at a time, which is all she has the energy for. She finds a gentle exercise regimen very helpful, now that she is not too dizzy, and is thinking about getting her drivers learning permit. She is now 21 years old.
The nurse phrased her question poorly. This pain scale was created by Karen Lee Richards, co-founder of the National Fibromyalgia Association, and does a good job of matching a specific pain level number to how it plays out in the real world and not an imaginary one.
Pain free: 0
Mild Pain: 1-3 – Nagging, annoying, but doesn’t really interfere with daily living activities.
1 – Pain is very mild, barely noticeable. Most of the time you don’t think about it.
2 – Minor pain. Annoying and may have occasional stronger twinges.
3 – Pain is noticeable and distracting, however, you can get used to it and adapt.
Moderate Pain: 4-6 – Interferes significantly with daily living activities.
4 – Moderate pain. If you are deeply involved in an activity, it can be ignored for a period of time, but is still distracting.
5 – Moderately strong pain. It can’t be ignored for more than a few minutes, but with effort you still can manage to work or participate in some social activities.
6 – Moderately strong pain that interferes with normal daily activities. Difficulty concentrating.
Severe Pain: 7-10 – Disabling; unable to perform daily living activities.
7 – Severe pain that dominates your senses and significantly limits your ability to perform normal daily activities or maintain social relationships. Interferes with sleep.
8 – Intense pain. Physical activity is severely limited. Conversing requires great effort.
9 – Excruciating pain. Unable to converse. Crying out and/or moaning uncontrollably.
10 – Unspeakable pain. Bedridden and possibly delirious. Very few people will ever experience this level of pain.
Betty, I agree the nurse phrased her question poorly. As did every medical practitioner we ever encountered that used the pain scale. (We saw lots.) I’ve heard comparable stories from many, many Lyme patients–of all ages, not just kids. The pain scale as you describe it here might be useful, but in my experience, that’s not how it’s often used.
Lyme disease is very vicious, and almost impossible to cure. Most time doctors focus only relieve symptoms. However, our body is God given, nothing is impossible in God’s view. We need to increase our immune system to fight off disease, and this won’t do with modern laboratory made chemicals. Let me talk straight. Drink your own urine (as our own body fights off with different disease everyday, our urine develops antibody for the specific disease) everyday, especially the first urine in the morning. You can take entire urine produced by your body everyday if your disease is real bad. Urine has different route to stool. Urine comes out through the genitourinary system, which is sterile, while stool comes out of gastrourinary system, which is non sterile. Urine is like blood but no hemoglobin part. God let us not drinking blood as this will brings us bad consequences. But drinking urine is the best thing for us. There is a short old story in Korea: Old noble man scolded a little boy next door. “you must’ve eaten salty food last night? it’s very salty!!” He was directed by doctor to drink child’s urine for his long time ailments, and he got cured from this. It’s like we no longer practice ancient proven remedies as we have ‘supposed’ to be better man made drugs. But let me tell you, not all modern techniques cure the disease. So be wise and careful.