Tag Archive | ME

Fluent in the “Language of Pain”

Pain and wisdom

A recent article in U.S.A. Today discussed the “health care crisis” of chronic pain, stating that 40% of Americans now experience chronic pain… 40%!  Just think about that for a moment.  Thankfully, research institutes are also finally paying attention to this startling statistic and studying ways to treat this epidemic.

What stood out most to me in the article is the description of what happens to a being when they experience unrelenting pain.  We learn to become fluent in the Language of Pain.  It’s the old “practice makes perfect” adage. But in this case, it is completely unhelpful.

Our bodies and minds are wired to learn new habits and behaviors through repetition.  The article states:

“In a sense, chronic pain is not all that different from learning to play the piano or speak French.  The more the body ‘practices’ processing pain, the better it gets at it and the stronger the connections between nerves becomes.”

It speaks of a term, us chronically ill are all too familiar with, “allodynia.”   Allodynia is when pain sensations are so out of proportion with the reality that even the slightest breeze on the skin, gentlest of hugs, or softest touch of a feather, can feel like scalding water, the burn of a blowtorch, or thousands of needles stinging the skin all at once.  This can be a very frustrating condition to explain to “non-sufferers.”  How do you tell someone, “I’m sorry, but your hug hurts me,” without hurting their feelings?!

Chronic pain is defined as pain lasting 6 months or more.  It can be triggered by illness, but also by post-surgical pain that doesn’t go away, injury (even after it is technically “healed”), aggressive medical treatments (especially those for cancer), and chronic conditions such as arthritis, back pain and headaches.

Chronic pain effects 100 million Americans and costs between $560-635 billion dollars per year, yet doctors only receive 9 hours on average of pain education during their entire medical school education!

One of the sacriest facts is that it causes permanent damage to the body.  Chronic pain can literally shrink the brain.  It can reduce gray matter as much as 20 years of aging does!! (according to research at Northwestern University)

The biggest enigma of the pain puzzle for me, is the incongruity of my own personal pain responses.  I actually have an extremely high tolerance for pain when it comes to injury, injections, and other invasive procedures.  And then there’s the flip side… my body can be triggered by God knows what (I always equate it to having a switched flipped). When this happens, I am writhing in pain, the touch of the lightest sheet on my body can trigger what feels like an attack on my body… my nervous system is on fire.  I would sell my soul to the devil to make it stop!

Hence the pain conundrum!

And also the reason why scientists state that suicide rates are twice as high in people with chronic pain.  Chronic pain is highly unpredictable and volatile.  And, currently, extremely mistreated and misunderstood.

Although, they are starting to discover that there are several non-invasive, non-drug treatment options for “quieting the pain.”  I have found many of these helpful (when I remember to employ them!) and I would be interested to hear what techniques others use to treat this painful condition.

  1. Exercise:  This can be the hardest to start because when we are in the midst of pain, our minds tell us to be still; we are terrified that if we move, it will only get worse.  But this is the exact opposite from the truth. The USA Today article states, “Exercise is as close as there is to a magic bullet for pain.” Hazzah!  I think of it as re-training the nerves, muscles and brain (just as it has been conditioned to feel pain at every turn).  I started riding my exercise bike daily 2 months back and it has changed my life.  Now when I am having a particularly bad flare of pain, my body actually “tells” me to get on my bike and move. And it works! Truly. NOTE: It may be helpful to begin a exercise program in a warm pool.
  2. Acupuncture: Once dismissed as little more than a “placebo effect,” newer studies in (objective) mice show that acupuncture stimulates adenosine, a powerful pain reliever made naturally in the body.  And studies in humans are showing that after acupuncture, there are powerful changes that occur in the nerve pathways, running from the brain to the rest of the body (an important way the nervous system can control pain). Has anyone had success with this?
  3. Massage: I swear by this! I see my massage therapist every 2-3 weeks and she has changed my body’s response to painful stimuli. My recommendation would be to find someone trained in therapeutic/medical massage that will work long term with you; make sure it is someone you can clearly communicate with. When I first started, my therapist could only “rock” parts of my body until I got used to touch. Now, even when my body is “on-fire,” it responds positively to her touch; she quiets the hyper-active nerves. There is no one else I would trust to touch me.
  4. Cognitive Behavior Therapy, Meditation and Bio-Feedback:  All treatments that use the mind to quiet the body.  I use guided meditations daily and can now almost “leave my physical body” when it is in pain (not always, but often). I know people who have had success with formal bio-feedback training and EFT (Emotional Freedom Technique or Tapping Therapy).

There are other treatment options, not scientifically proven, but people have found comfort with:

  1. Chiropractic Care
  2. Magnet Therapy
  3. Reiki
  4. Heat Therapy
  5. Hydrotherapy
  6. Electrical Stimulation (TENS units)
  7. Ultrasound
  8. And what I like to call: “Distraction Therapy:” engaging the mind in another activity (something simple and repetitive like knitting, coloring, zentangles, bead stringing, crosswords or puzzle books, music, silly kitten videos!, etc.), until the pain becomes distanced from your physical body. This works wonders for me!

Please share your pain coping techniques, so that we can all benefit from the shared experience of this “painful” condition (pun intended!).

If you are interested in reading the full article, follow this link:

Chronic Pain: A Health Care Crisis

Also, here is a link to the American Chronic Pain Association:



Role Reversal~Another Challenging Adjustment


My husband and I have reversed roles; and I am still adjusting to this change even after 5 years.  I still see myself as the one who held our home together, juggling work and household obligations.  And doing it all with aplomb, I might add!  But when I truthfully look at “today,” I see that I am no longer capable of doing it all, being a 21st century women who has eight arms and three brains.   And I miss that old me; the one that everyone relied on, most of all, my husband.

Sometimes when I think back to the women I was (not so long ago), I feel like I am thinking of a character in a story.  I couldn’t possibly have been capable of so much, could I?  Yet, I was.

While living in Boston, I remember waking in the wee morning hours and getting dressed in the dark so as not to disturb my ever-sleeping husband.  Out the door, I would truck across lanes of traffic, deftly moving out of the way of on-coming cars (that feat alone amazes me; I can’t even imagine having to cross the street at anything faster than a limp, drag, stumble these days!).  Climbing a steep incline I would arrive at the transit stop to catch the cross town bus.  On the days I just missed it, I would merely shrug, hold tightly to my (heavily loaded!) briefcase, lunch sack and ever-present coffee mug and hoof it a couple miles to the B.U. bridge, crossing The Charles over to Cambridge where my office sat overlooking the serene waters.  And I wouldn’t even break a sweat! Arriving at the job I truly adored, Director of a large child care center (135 kids and 35 staff!) I would begin work at 7a.m. and continue non-stop through my days until, many times, 11 hours later.  I was constantly on the go; up and down the stairs, up and off the floor from playing with the children who made every day worth the effort, interacting with staff and parents, juggling financials and accounts, trainings, meetings, the list goes on and on. I excelled at my job and was often rewarded with company bonuses. This “excellence” came from a deep passion for my career.  The company I worked for emphasized the fact that “the buck stops with the director.”  And I loved this responsibility.  I adored working with young children and creating an environment where not only the children, but the staff would thrive and grow.

And my day didn’t stop when I locked up the doors for the night.  If I ended any later than 6:15 (which was often), I missed the last bus and would return home by foot, once again.  Then it would be a stop at the market where I would load up with groceries (how in the world did I lug bags laden with water and milk jugs along with all my work gear?!).  Arriving home, I would clean up, make dinner, do work projects as well as squeezing in social activities almost nightly… getting together with friends, playing pool in the league, going out to bars or to dinner, seeing live music.  How the heck did I do it all?!  Week-ends were equally filled, many times including spontaneous trips to hike the Appalachian Trail or overnights in a quaint New England town.  And everything was planned by and implemented by me.

For many years, my husband battled debilitating depression and I was the one-woman army that held our unit together.  Fast forward to today where the tables have completely turned.  Something I would never have predicted.  I watched my mother growing up hold our family together and having this seemingly unending supply of energy to complete a multitude of tasks (she’s still this way, working almost full-time at 67).  This was my inherited role, and for many years, I confidently filled it.

No doubt, there’s a part of me that wonders if this contributed to the development of my autoimmune illnesses.  It’s not uncommon to read reports stating that the common denominator in people who develop these types of chronic conditions (from Fibromyalgia to Multiple Sclerosis to Migraine Disease and Lupus and of course, Polychondritis) is: “women in their late 20’s to early 30’s that are Type-A personalities.”  Sound familiar?!

But I didn’t heed any warning call and slow down before it was too late.  I came to a screeching halt upon facing the train-wreck that is my current life.  God put the brakes on for me.  And just like suddenly coming upon an accident that you have to immediately react to, I had no transition period between being “the woman who can do it all” and “the woman who can barely do anything.”

For a couple years, our home fell into a state of complete disarray.  I was far too sick to even think about cleaning up my external environment when my internal landscape was rapidly being consumed by raging fires.  An apt analogy, because during those years, that was all either my husband or I could do, put out one fire after another, with no energy left to put towards clean-up efforts.  We relied on friends and family to help.  But, for the most part, we just ignored it as dirty dishes and un-paid bills piled up. (Did I mention I was also responsible for all our financial book-keeping, too?).

Then things changed.  As I got sicker, my husband got healthier.  And he started to step up to the plate and take responsibility for our home.  I have to admit, at first, it felt good. To be the one sitting back while he juggled all the tasks required in maintaining a home.  His eyes were opened to all the things I had been doing, mostly unrecognized, for over a decade.  And I soothed my anxious mind over doing nothing, by reminding myself that it was “his turn.”  Of course, that’s when I thought it was temporary!  I figured once I got better and more able-bodied, we would be able to divide the labors, both acting as equal participants.

But, at least so far, we’ve never reached that equilibrium.  Now, it is my husband who truly does it all.  And, oh, how I struggle with this!  Of course, I “look” able-bodied on the outside.  But even the simplest of tasks can throw me into a flare.  For example, I decide to try and cut and prep the veggies for dinner and I end up with cramped, swollen hands, shooting pains in my back, and deep fatigue.  And then I am disappointed when the cheering section doesn’t pop out of the closet, with a “Rah-rah! Sis-boom-bah! Hooray for Tamara. She’s the bomb!”  There is no one celebrating these minor accomplishments that I view as major achievements.  And now that Dave is “super hubbie,” our family and friends see our home clean and our bellies fed, and assume we are handling everything just fine.  But I know the strain this puts on one person.  All I want to do is talk my body into getting off this chair and going into action mode!  Alas, that is not the answer either.

So, I bring myself back to “just for today.”  Obviously, I don’t know what the future holds so there is no reason for me to try and figure it out.  Instead of focusing on all the ways in which I feel “lacking,” I am choosing to focus on all the ways my husband is excelling.  And this fills me with gratitude.  I am extremely blessed to have someone to care for me.  And that’s really the most important thing, after all, isn’t it?