Living Well: Learning the Language of Pain

Living Well: Learning the Language of Pain

(Editor’s Note: National Pain Report is very pleased to welcome Joy Selak as our newest columnist. Joy’s personal mission is to help other patients who live with chronic illness find ways to build meaningful lives and access effective health care.)

When I was diagnosed with interstitial cystitis, a painful bladder disease, my new urologist, after a brief discussion, prescribed a single medication for me.

I am drug sensitive and developed a rapid heartbeat on the drug, which I felt was dangerous. When I told him about this he reacted by saying, “None of my other patients have reported that side effect.”

Joy Selak

Joy Selak

He seemed to blame me for being non-compliant to his regime, rather than willing to work with me as a unique individual.

I moved on and found a wonderful female urologist, who referred me to a rheumatologist. When my rheumatologist gave me a second diagnosis of mixed connective tissue disease, an autoimmune disorder, he told me up front that my treatment would be an experiment.

“This is a vague illness and we will learn through trial and error what can improve your symptoms. As we zero in on what helps, we can develop a personal, comprehensive plan for you,” he said.

As part of the team, I had to learn to be an observant and accurate reporter of my symptoms, especially my pain. Pain is very difficult to treat, as it is subjectively reported and cannot yet be empirically tested or measured.

In a personal or social setting, we may effectively draw on vivid descriptions for our pain to aid in understanding and encourage sympathy and compassion: It’s like being cut with a thousand shards of glass, it feels like my skin is on fire, I feel like lightning bolts are hitting my body.

In a clinical setting, our job is to work with our provider to develop a shared language of pain, one that is broad enough to include how we experience pain, as well as what triggers and soothes it.

Saying “I hurt all over” or “On a scale of 1-10, my pain is a 10,” is certainly part of the conversation, but it doesn’t get the dialogue much past conveying that the pain is widespread and severe.

My rheumatologist helped me dig deeper.

“We need to discover the driver of your pain in order to treat it successfully,” he explained. “Is it the central nervous system, is it inflammation, is it caused by exertion, or due to low serotonin in the brain? The kind of pain that is driven by inflammation in the joints is different than the kind of pain that comes from a neurological condition,” he said.

I went to the Internet for help and found a memory aid from the American Pain Foundation that helped me zero in. It is called LOCATES:

  • Location of the pain and whether it travels to other body parts.
  • Other associated symptoms such as nausea, numbness, or weakness.
  • Character of the pain, whether it’s throbbing, sharp, dull, or burning.
  • Aggravating and alleviating factors. What makes the pain better or worse?
  • Timing of the pain, how long it lasts, is it constant or intermittent?
  • Environment where the pain occurs, for example, while working or at home.
  • Severity of the pain. Use a 0-to-10 pain scale from no pain to worst ever.

Keeping a pain diary also helped me understand and describe my pain more accurately. I began to learn how pain operates in my body, find manageable patterns and develop strategies to work with the pain, instead of futilely fighting it.

Here are some things you might want to keep track of in your diary and what I learned from doing this myself. Partners Against Pain also has several templates for Tracking Your Pain that you might find useful.

  • Rate your pain on the 1-10 scale at different times of the day. (My pain was worse after 3 PM and in the evening, best when I first woke up.)
  • Note the activities your pain interrupts. (Strenuous exercise of any kind was a trigger, as was stress, fatigue and sitting at a desk.)
  • List aids or therapies, other than medication, that improve your pain. (Massage therapy, gentle pool exercise and bed rest twice a day helped.)
  • Note the meds you take, when you take them, the relief they provide and for how long. (Because I am drug sensitive, opioids often provided mild, continuing relief for several days, and also allowed me to temporarily forget what pain felt like, which was tremendously valuable.)
  • Keep track of any side effects of your pain meds. (I felt a little drunk in the first hours after taking Vicodin, so I learned to take it several hours before meeting any performance demands, including socializing.)

To help you expand your pain vocabulary, a workshop handout on Pain Management from the Idaho Health Care Association lists words that can be used to describe pain and its physical and emotional signs and symptoms.

Some words to describe pain are crushing, gnawing, radiating, ripping, squeezing and tearing. When your body responds to pain, you may experience symptoms like dizziness, nausea, pale skin, appetite changes, vomiting or sweating. And you may behave in different ways than a person who is pain free by clenching your jaw, grimacing, grunting or becoming very quiet or still.

You may also find your speech changes when your pain flares, becoming faster, slower, louder or quieter. My husband learned that if I became very quiet, I was likely having pain and he would kindly ask, “What can I do to help?”

These are just a few ideas from a few resources for learning the language of pain. Through you physician, pain specialist, alternative practitioners, support group or your own searches you may find many more. If you do, please add them as comments to this column, so others might share and benefit from our collective effort. I wish you every success in learning to Live Well, even if you can’t get well.

YDLS2Cover.jpg.w300h451Joy Selak has been diagnosed with Interstitial Cystitis, Fibromyalgia, Mixed Connective Tissue Disease and Trigeminal Neuralgia.

Her book, You Don’t LOOK Sick! Living Well with Invisible Chronic Illness, takes readers through the 4 phases of chronic illness experience — Getting Sick, Being Sick, Grief and Acceptance, and Living Well — and is written from the alternating perspective of a patient and her physician.

Joy has two blogs, Joy Writes and Chronic Invisible Illness. She lives in Austin, TX.

Authored by: Joy Selak, Columnist

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Thanks so much, Alice. And if you do have some tips yourself, please share them!

Alice McBride

Joy, I love this article. Your writting is wonderful and so helpful. It seems I have spent my whole life trying to describe symptons that take years to finally diagnose. I learned long ago that you must be your own advocate but I havent been very good at it. Thanks for all the ideas on how to keep the diary. Love you and so glad you are doing better. Alice

I just looked you up on the ICA website, program development, my dream. As I end a long tenure in leadership on an arts board, I am looking for a new direction. I so want to find ways to help patients access better care and physicians deliver it.
I just submitted my application for the ICA board, because I think yours is the finest patient advocacy group I’ve encountered over all these many years.
Kudos to you and the work you do!

What a wonderful article, Joy! I enjoyed reading this as much as I did your interview in the fall 2012 issue of the ICA Update. You hit the nail on the head — it is important for the patient to be their own best advocate and be a participant in their care. This is exactly what the Interstitial Cystitis Association (ICA), the only non-profit dedicated to IC patients, strives to accomplish. We are also developing a free online self-management tool which will include pain tracker; it will debut at the end of this month. For more information, visit