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Archive for January, 2015

Disclaimer: I am not a medical professional and nothing in this blog is intended as medical advice. The following information is autobiographical. The pronoun “you” is employed as a narrative tool to express my own experience. I do not claim to know the cause of others’ pain nor the remedy others should pursue. I do not mean this post as a denial of the reader’s personal medical situation. Although I hope that someone will find guidance by reading my story, I do not believe my experience can be applied to everyone. 

Starting in 1996, I was in pain every day for 7 long years. I saw many doctors and tried many treatments.  Back pain, hip pain, and foot pain took turns ruling my life, except when they all popped up at once. Occasionally other body parts chimed in. The shifting cloud of diagnoses that hung over me included IT Band injury, Neuroma, Greater Trocanteric Bursitis, Shin splints, Metatarsalgia, Sacroiliac joint dysfunction, and Degenerative Disc Disease.  Today I just call it Tension Myositis Syndrome (TMS).

I give credit for my discovery of TMS to Jeff Galloway, whom I met at his Tahoe running camp in 2003.  I was a bit of a mess. Galloway listened with earnest sympathy. Then he said, “There is a book you might want to read.” (Healing Back Pain by Dr. John E. Sarno.)  He would not tell me more, and now I completely know why. No one talks about TMS. TMS is “weird.” It makes people edge away.

Having been pain-free for so many years, it is hard to dig up this story and retell it. So hard that I’ve been trying to make myself write this for over a year. But a lot of people suffer needlessly, and I am sitting on a story with a truly happy ending. Perhaps what I learned will help someone, so here are some things I know about TMS:

1. Your brain can open or close capillaries in response to psychological events. We all know that an embarrassing thought can lead to blushing.  Likewise, your brain can repress an undesirable emotion by distracting you with pain. The mechanism used is the same one as for blushing: the autonomic nervous system.

2. Certain kinds of people get TMS more often than others. Typical TMS sufferers are conscientious, hard working, and  “good.”  Of course you can be all those things without TMS, but TMS finds good people like bees find flowers. Deep inside our minds, being good means “no anger allowed,” which causes repression.  Anxiety, frustration and fear are also candidates for repression, but anger is the least tolerated emotion  from our earliest age. (More about that in a moment.) Repression of negative emotions is the reason TMS exists.  Some other typical tendencies and experiences of TMS victims include: child abuse or childhood trauma, perfectionism (by which I mean having an attitude of “the right way, or not at all”), driven work ethic, overly generous, and seeking of approval.

3. TMS hops around. One body part hurts, but then a different one hurts. If you are seeking treatment or going through some physical therapy, it can feel like some kind of whack-a-mole game. But this tell-tale shift in location helps you spot TMS and distinguish it from physical injury.

4. TMS does not produce physical evidence other than pain and does not heal with time. True physical injuries produce redness, swelling, bruising, inflammation and other physical evidence. And then they heal with time. A broken femur will heal in 6 weeks and be stronger at the break point than ever before. (A corollary of this point is that cold packs will make a true physical injury feel better but will aggravate TMS. The capillaries don’t need another excuse to stay constricted!)

5. Resting a TMS “injury” does not heal it, but movement and resuming regular activity does.  In the early stages of my “cure” period, one way I knew a pain was TMS was that resting for a day or two made no difference. The part of your brain that is masterminding the disability must be told: No more. I’m not buying it. I’m going to stand, bend, run, whatever. Most importantly, I’m going to think that thought, remember and that dreadful thing that happened, or look that demon in the eye.  The cure for TMS is a mental process. Without its mission of distracting you, TMS loses its reason for being and vanishes.

6. TMS is open to suggestions. A while back, everyone had Tennis Elbow. Years later lots of people wore little wrist braces for Carpal Tunnel Syndrome. More recently I have heard a lot of people suffer from Plantar Fasciitis. I am not saying those diagnoses are invalid. I am saying that my experience with pain included new pains popping up when I heard about other people’s pains.  I often wonder if TMS is to blame for what appear to be injury “fads.”

7. TMS is stupid. Let’s just anthropomorphize TMS for a second while we imagine him sitting up there in the control room saying, “Uh-oh. We’ve got an Unthinkable coming in. What have we got? Foot pain! You’re up! Get in there!”  And you happening to be running so you figure, “My foot is injured! Oh no!”  But the next day you run with a friend and chat about life and feel great. That night, the pain comes back while you are just sitting around watching a movie. TMS doesn’t know that it should only use that one while running, and always while running. So the pain comes and goes without rhyme or reason.  TMS wants to fool you to make the distraction work, but isn’t clever enough to follow the activity. It follows the thoughts. So why do we believe it? Because we live in a culture of injury.  It is considered normal to get injured. We may be horrified at the sudden pain, but we are not surprised. The statistics on running injuries alone are astounding. The species that lived for millennia by their legs and their wits alone cannot be so fragile.

8. TMS relies on a part of your mind that is sometimes called Child Primitive. It is a bit like your inner child, only way more “inner” and way more destructive. Child Primitive can generate of lot of anger that the adult You must repress. Do you get pain right before an important event? Or perhaps pain upon waking up to face a new day? Child Primitive is rolling on the ground in full tantrum mode: “I don’t want to go! I don’t want to have my worth/skills/strength (insert one) tested! I hate this job! I hate having no power!” TMS may put Child Primitive in a time out, but she is still there, raging.

9. You do not have to solve one single problem in your life to get rid of TMS.  TMS is not about being a happy person. It is not even about stress, though it certainly appears that way sometimes. TMS is about distraction. Curing TMS is about thinking the unthinkable. “Whoa. What was I just thinking about when that spasm of pain came on?”  I asked myself and answered that question many times until “poof.” No more pain. It was that simple. Not easy, but simple. Here is more good news: sometimes you do not even need to get a mental grip on the thing Child Primitive is raging about. It is repressed and often hard to find. Sometimes you only have to allow your mind to “think rage.” Free floating rage. Like joy and love, it spreads to where it needs to go.

10. The single most difficult thing to do with TMS is to take this leap of faith: the pain really is TMS and you really can get up and resume physical activity. The only way I could do this was to start with the psychological work. When I saw myself described to a T in the aforementioned book, and when I felt less pain just by concentrating on emotional issues, I took the next step and went for a run. Things were going well until a seemingly innocent thought flitted across my consciousness and I was instantly in pain again. But that just helped me know that I was on the right track. Psychological, not physical. And believe me, once you see that the wizard is just a man behind a curtain you are ten times harder to fool again. Within two weeks I was living pain free for the first time in years.

11. TMS is not “all in your head.” It is real, physical pain. But nothing is “broken.” Like a headache or menstrual cramps, it can hurt like hell without any physical injury present.

12. TMS loves props. TMS wants your attention focused on physical disability so it can do its job: to repress The Unthinkable. I had heel lifts, back cushions, cortisol shots, special ice packs to put on my hip, special pillows for my car, my chair, my bed… Physical aids, doctor appointments, and therapy exercises keep your mind far away from the real cause, and keep TMS going.

13. TMS is trying to help. This seemingly sadistic mechanism is meant to protect you. The need to protect you begins in early childhood. All small children have an involuntary reaction to their parents’ displeasure, dating back to the dawn of humankind: it is the species-preserving concept that rejection from my parents equals death. What good brain wouldn’t work on an early prevention plan for that?  When you were about 3 years old and felt fear, did your parents praise your smarts for being afraid of potential danger or did they deny your reaction with “nothing’s wrong, go to sleep”?  When you were very angry, did your parents say, “Good job! When I see those Cheerios all over the floor I am so glad that you are fully experiencing your emotions!” Small children express emotions with actions more than words — unacceptable actions.  Thus they learn that certain emotions are dangerous, and their wondrous brains learn to protect them.

14. TMS can catch a ride on the back of a true injury. This particular characteristic is not something I personally experienced, but heard about from others. The sufferers had a “real” injury that seemed to heal, and much later started hurting again.  In these cases, it seems TMS just found a nice, believable story to tell them.

15. TMS will gladly cooperate with your doctor. (And vice versa.) When people are in pain, doctors must come up with a diagnosis and a recommended course of action.  TMS loves this validated focus on the physical. If you don’t respond to PT or cortisol or whatever therapy is recommended, another is tried. There is no null hypothesis in this game, no possible proof of falsehood in the assertion that “where there is pain there is injury or illness.” And so we continue to pour our money and our hopes into physical remedies. Over 70% of back surgeries fail to provide relief. But they continue to be performed.  Blood letting was practiced for 3,000 years before people would admit that doctors were hurting people.

16. When someone discovers that all their suffering has come from TMS, it is extremely embarrassing to tell people that you are suddenly OK.  I made so many drastic life changes because of the pain I was in, and I shared it with so many people. Then I was pain free, seemingly overnight.  Friends who saw me limping just last week would ask me how I was doing. Telling someone you have a running injury is a whole lot easier than telling people, “my pain was caused by repressed negative emotions but now that I’m facing my inner rage over childhood trauma, things are really looking up!” Not exactly the kind of thing you want to put in your annual Christmas letter.

Am I really cured of TMS? Yes, with a “but.” I am completely free of chronic pain. I live an active life. I have trained for and run 22 marathons without injury. Nor do I worry about injury. I lift heavy objects without bending my knees, I run as far as I want to in minimalist shoes that are far beyond their recommended mileage limit, and I practice my harp or knit for hours with nary a thought about tendonitis.  But… every now and then when a particular kind event comes into my life, I can feel my TMS trying to “trigger” a pain in one of my old familiar spots. My happy ending is that I now can easily detect and stop TMS. It takes less than a minute. Far from being the Great and Powerful Oz, or even a simple man behind a curtain, TMS has become more like a naughty cat trying to get the food cupboard open.

Recommended reading: Healing Back Pain by Dr. John E. Sarno. He has written a number of books but that one remains my favorite. And you can insert any body part name instead of “back” – it’s all the same to TMS.

2/1/2017 Update: There is a new voice in this field, and I couldn’t be happier that TMS is still being studied and addressed. Please visit Dr. David Hanscom’s site: www.backincontrol.com  His book is the same title as his website, Back In Control (which I think is an absolutely brilliant book title for this subject if you think about it).

June 2017 updates: First, the great Dr. Sarno has passed away at the age of 93. His work in the field of mind-body medicine shows what a huge difference one person can make in the world. Thank you, Dr. Sarno, and rest in peace.  Second, a documentary has been made about Dr. Sarno’s work, the trailer is here.

Online help:

 http://www.mindbodymedicine.com/

http://www.tmshelp.com/

http://www.tmswiki.org/ppd/TMS_Recovery_Program

Local health practioners:

http://www.seattlebiofeedbackpsych.com/

 

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I miss photo albums. I miss those envelopes with the photos in front and the negatives in back. Sigh.

No, I don’t want to go back to where paper was the only option.  I like deleting with a single key stroke those pictures that make me look fat. I like holding a thousand memories on a single page I can scroll through. I’m talking about a nostalgic feeling for a time when “scroll” meant something about Egyptians.

Years ago I decided that photo albums were for suckers (so overpriced) and started putting pictures in shoebox-like “photo-boxes”, where they subsequently languished.  After my recent move, I vowed to go through my photo boxes and at least make them easier to peruse and enjoy. (That is code for: get them out of the damn envelopes, line them up in those boxes in such a way that they can be flipped through, and put the negatives into storage. Honestly, if I haven’t searched for a negative in 25 years, will I ever?) This process has unearthed some lovely gems, but also a few mysteries.

For example, behold a charming scene featuring myself and my adorable siblings. And on the left side of the photo (all on one piece of card stock)… wtf? Mrs. Rohrbach? Our terrifying school principal?  NOOO!  Why??

photo - family, and ?? mrs rohrbach

Let us move beyond this disturbing apparition to a picture that warms my heart. This is my mother (right) with her niece and best friend, circa 1931. My mother lived with her sister’s family for several years during the Depression. This resulted in her not starving to death.

photo - mom with rena 1931

Never fear. When a photograph begins to pull you down, there is sure to be another that lifts you up. No names. You know who you are:

 

photo - s, t

Ok. Next. Now, who are these people?  My photo boxes are filled with mystery guests like this. Note to the wise: label the backs of your photos; I know you think your children will remember these people but trust me, we don’t.

photo - who are they?

The other thing that fills my photo boxes are these childhood shots that are unbearably sweet.  Before the heartaches, bereavements, and wounds that balance out the exuberance of childhood into that thing we call Maturity, this is who we were and what we had. And that is point of taking photographs in the first place.

photo - cutest babies ever

 

 

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If chocolate had a sound

Talk to harpists about their impressions upon first hearing a harp and you will find a common theme.

“I found the sound irresistible.”

“I was drawn to it as I never had been to other instruments.”

“I knew right away: I just had to play harp someday.”

Have you ever heard anyone say, “The first time I heard a trombone, I just dropped everything and was mesmerized by the sound”?  Drums? Flute? Hurdy Gurdy?

I know those instruments have their appeal, their reasons, and their own magnetism. But harp… it’s different. There is so much pleasure in the sound of a harp. Sometimes I think we harpists are the hedonists of the musical world.

Those of us who get snagged by The Harp seem to do so on a deep and mysterious level. We want that sound, and those fingers, and the feeling it gives us when we first hear it. We want it so bad.  And yet, it is so hard to express and describe. What is it that beauty we hear? What is that quality of sound we must pursue?

Wind going between tall buildings.

A piano under water.

Something from a half-forgotten dream.

Soft and round, yet percussive.

A pine tree seen through fog.

A voice, but not voice-like.

The sound of chocolate if chocolate had a sound.

IMG_3658

 

 

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