From Both Sides of the Couch

A therapist reflects on her time with patients, and her time as a patient.

The Enigma of Fibromyalgia

I remained perplexed by this disorder until I encountered it myself.

Several of my female patients have been diagnosed with fibromyalgia. I have to admit that when I first began working with them between one to two years ago, I didn’t know much about the illness. The little that I knew consisted of bits and pieces that I had heard; questions about it being a “real” condition, questions concerning how much of it involved a physical component and how much of it entailed an emotional component.

I read on the subject and when I first began what I read appeared to be fairly controversial. I wasn’t sure what to believe. I read about the all-over pain and fatigue and wondered how bad it could be, and if it was true, how anyone could bear it and function day to day.

I listened to my patients and tried to blend what they told me with some of what I had read, until I thought that I had the best of both worlds in order to be able to help provide constructive feedback and empower these women.

The manner in which they presented with the condition varied widely from being open with their physical complaints to going to great lengths to avoid talking about them to some middle ground. Some of them seemed content to let the condition limit their activities and subsequently their achievements; a few were determined to finish what they had set out to accomplish before the onset of the syndrome.

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I came to understand that fibromyalgia is a unique condition; that it affects each individual differently and it is not up to me to judge how each person who suffers from it reacts to its symptoms. Each person does what they can when they can. Each person has good days and bad days and needs to listen to their body and act accordingly, using their best judgment.

 

About a month after I started to recover from a relapse of anorexia this past summer, I noticed my joints and muscles aching more than they had been while I had been underweight. Additionally, while I proceeded to gain weight, I continued to be extremely fatigued, often having to shut my office door in the middle of the day and close my eyes for twenty minutes. The pain didn’t go away as my weight normalized; it got worse, especially after I had been in one position for a while. When I exited my car after my hour commute, it seemed like I had to actually unfold myself and I had to keep myself from crying out. Getting out of bed in the morning was torture.

Earlier this month I made an appointment with a rheumatologist and after ruling out other conditions with blood tests, she diagnosed me with fibromyalgia. I had been coming home from work at six or seven in the evening and going straight to bed, sometimes not even eating dinner because I didn't have the energy. I slept until five in the morning and woke up unrefreshed.

I started physical therapy this morning and the stretching part and exercise part were hard. I realize that I need to make regular exercise a part of my routine, but I also realize that I can’t go at it like I used to; full speed, an hour a day, seven days a week. It will be a difficult adjustment for anything less will feel like a failure.

No medications were prescribed because I already take an antidepressant and Cymbalta is the first-line drug prescribed for fibromyalgia. I respect the doctor for taking the stand that my mental health and sanity take priority, especially since my psychiatric illness was so severe.

I have not disclosed the syndrome to anyone but family and several close friends; no one at work. I let my psychiatric illness define me and limit me for such a long time and I have no intention of allowing fibromyalgia to restrict my activities and goals. I have every intention to continue to work as a clinician, to keep writing and publishing, seeing my family, and having a social life. I have worked too hard and come too far to put a cap on my future.

After I was diagnosed I did some additional reading on the subject. I found an article on mayoclinic.com that speaks to the point that fibromyalgia is a real condition. Here is the link:

http://www.mayoclinic.com/health/fibromyalgia/AR00056

Just as I came not to judge my patients and came to have respect for each of them and what they were enduring as individuals, I need to do the same for myself. Just as I encouraged them to make themselves the priority in their lives, I must learn to do the same for myself.

Now is the time to call on the DBT (Dialectical Behavior Therapy) skill that I first learned twenty years ago during my long-term hospitalization for borderline personality disorder. That key skill is Radical Acceptance. I need to radically accept that I have this condition and that it won’t go away. That I will have to adjust, to accommodate, to learn to live with the ups and downs of it for the rest of my life.

In 2003 I had the privilege and the pleasure of meeting Dr. Marsha Linehan at a conference on DBT. My mother had passed away less than a year ago so I asked her how I should go about radically accepting her death. I’ll never forget her answer, and her words are the same words I turn to now as my life has taken this twist.

“Practice, practice, practice.”

 

Gerri Luce is a licensed clinical social worker who publishes under a pseudonym.

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