Sunday, September 8, 2013

Thoughts on Pain

My medical training did not cover how to live with pain. My hundreds of encounters as a patient did not focus on how to live with pain. Always, the teaching was about getting rid of pain. 

When the cause of pain can be fixed-a bullet removed, a broken limb casted, an illness cured or put into remission-it is wonderful. The doctor feels successful, the patient is satisfied and relieved. Often, however, a tentative compromise is achieved-some pain relief, a decrease in severity of the illness, a continued need for treatment and monitoring-producing a distinct change in lifestyle for the person affected. When the change involves chronic or recurrent pain, we need to consider more than which pain pill to grab.

I am writing this from the perspective of one currently in pain. This flare of lupus activity has produced severe joint inflammation, and inflammation produces pain and stiffness. I cannot wait for resolution and write this, because our memory for pain is minimal and my best ideas for dealing with it come when I need creative solutions to my own misery. Later, I will forget the pain so thoroughly that it will seem less important to record this information.

Pain serves one purpose. It helps us know that there is a problem, and sometimes where that problem lives. Otherwise, it is not helpful. It doesn't make us stronger or braver or more kind or understanding. It doesn't enrich our lives and help us notice the small wonders of the world. I have to work hard to keep the pain from making me mean, impatient, unfriendly, sad and helpless. It is a grueling experience. It is humbling in the way that being whipped into submission is humbling-no honor in it.

I am a strong advocate of using pain medicines. We have good ones available and-when a doctor accepts their usefulness and educates herself-they should be used whenever indicated, without prejudice or judgment, once the source of the pain has been determined. I am not writing with the intention of eliminating this practice, but with the desire to supplement it. It is rare for pain medication to completely eliminate pain. The usual "successful" outcome is for pain to be diminished by half or more. That is enough for most people to function well and be relatively comfortable. I am writing about dealing with the space in between, where relief is elusive or delayed.

For me, pain magnifies my "To Do" list. I realize that I am hurting and instantly I see all the things I need to accomplish lined up before me. I start rushing to finish things, trying to beat that imaginary clock that pressures me about getting done before the pain takes over completely. That panic has left me crying and exhausted, unable to do the basic things that will help me be more comfortable. My solution has been training myself to slow down at the first twinge of severe pain-slow down and think. I sit down and work my way through a few questions:

1. Why am I hurting so bad? Did I forget to take a dose of medicine? Have I been neglecting sleep? Is this disease getting worse (do other symptoms exist besides pain)? Am I being affected by some other circumstance like loneliness, money stresses, or the pain of someone close to me?

2. What will make me feel better right this minute? Think heat, cold, position, rest, stretching, a cup of coffee or tea, a more supportive pair of shoes...

3. Can I distract myself for a while? Reading, playing a game, watching an episode of a favorite show, knitting, etc.

4. Can I get a cuddle? My dachshund is curled up like a kidney bean right next to me. She is always good for some snuggling. But you also know someone you can call who has an outlook that makes you feel better. Sometimes it isn't Pollyanna. It can be the one that makes you laugh or the one who commiserates about the ugliness of acrylic yarn.

All of those questions help me when I am at home. If I am away, I think a little differently. 

1. What will help me right this minute? A riding cart in the grocery store, putting off this errand until another day, pulling over for a stretch and change of seat position, putting down half this load and making a few slow trips, a cold bottle of water placed against a painful area, the car seat warmer...
and the rest waits until I am home.

Pain is not  necessarily good at telling us about function. Sometimes in acute situations it directs us well-it hurts when I try to move this broken arm, so I keep it still, avoiding further injury. Outside of those acute situations, pain can be misleading. For instance, the severity of the pain doesn't always correlate to the severity of the physical problem. A paper cut hurts terribly but is not life-threatening. However, pain makes us anxious, and the worse the pain the more severe the anxiety. I remember this when I have to function in spite of pain, so that I push away the pain and anxiety and continue to do what I must. If I am in the grocery store and pain grips me, I think "Yes, it hurts to walk, but I am not making the inflammation worse when I walk. This pain isn't teaching me anything new, so control the anxiety, breath it out and keep moving." 

Just now I went for a cup of coffee and took my meds. My body is saying that this is enough for now. Only one more word.



  1. Wonderful advice and philosophy. I've forwarded this to a young friend with RA.

  2. Mary Z forwarded this link to me. I am 37 and living with psoriatic arthritis. I have no solution for you, only an empathy with your to-do list. What I have learned outside the flares is that much of the list is actually unnecessary; something I forget about in my deepest, most irrational points of pain. Wishing you peace and love, and of course, relief.

    1. Peace and love to you too. I hope this new year brings you freedom from the effects of pain and physical limitation. In our minds we can fly!


  3. Mary Z, you are such a positive force! I always appreciate your words of support. Thanks for forwarding to your friend. Governor Jen, you bring up a huge point-much of that to-do list is unnecessary. However, I am divorced and my daughter is in another city, and sometimes I do have to get those dishes done and wash some undies. Thank goodness my mother raised us to have at least 30 pairs of panties, hehehe.

  4. Really inspirational - have forwarded a link to lupus sufferers on our site.

  5. Wow, this is the first time I've heard from someone else that they experience as I do the forgettability of pain. I always thought it weird to be sitting at the doctor's office, answering truthfully that I'm not in pain, then getting slammed by it yet again later the same day when I'm another six months out from the next appointment. I love how you expressed the way pain can affect the way we interact with others. And I didn't know (but fully believe) that the best we can hope for is a reduction of pain to manageable levels. Shucks, I like the whole post and thank you for it. It's been awhile since I've visited your blog. So glad to have bookmarked it. It feels good to return to the well from time to time.

    1. Wendy, this pain business is complex, isn't it? You bring up a great question-what do we do about that after-the-appointment pain. I used to think I didn't need to mention pain that occurred before the appointment, but now I know that my doc needs to understand the severity of my symptoms in order to plan treatment. One of the things that made me decide this was the way my primary care doc would say "You look great. Now we need to get you a job!" It took a lot of detailed reporting to make him see my disease as it truly is. Anyway, many thanks for all the cool compliments. It makes the blogging worth it.