The Fibromyalgia Dialectic: Finding the Balance Between Rest and Move

One of the most confusing aspects of Fibro is that often the person suffering does not know whether to rest more or to move more. These two ideas seem to be diametrically opposed. The truth is, they are both right. And that’s the confusing part.

There is a new and growing trend in treatment called DBT — Dialectical Behavior Therapy. The dialectic addresses two states of mind that seem to be opposites, but actually coexist: the need to accept wherever we are in the moment and the need to change. For the ideal therapeutic result, both the therapist and the patient must understand that they are both true, and operative in the moment. For Fibro patients, they are often caught between the body’s desire to stay still — as interpreted through the amount of pain being perceived, and the knowledge that motion may relieve pain.

It is no secret that exercise helps Fibro, and in fact helps all kinds of chronic pain and illness. The problem with the Fibro sufferer is that they are thinking two things at once:

Mind says, “Go to the pool! Take a walk! You’ll feel so much better!”

Body says, “Accept me where I am! Listen, I’m telling you to rest!”

This is often followed by, “If you go for that walk/swim/yoga class you’ll pay a price. You’ll feel worse later. You’ll over do it. And the pain will be worse tomorrow.”

Pain is then multiplied by the added layer of fear, and motion no longer seems possible.

The therapeutic goal is to recognize that these ideas can and do exist together in the mind, and that does not mean you stay stuck. The secret to successful treatment is to find the balance, and not allow fear to dominate the internal conversation.

Acknowledge pain. Move gently. Allow for healing as a possibility. Be a warrior.

A Better Model for Treatment of Fibromyalgia

It is estimated that over 5 million Americans suffer from Fibromyalgia, most of them women, the vast majority of those over 40. Fibro is clinically defined as pain in a number of points throughout the body, and symptoms can also include fatigue, sleep disorder, nausea, headaches, memory loss and depression. Pain and other symptoms can range from mild to severe, and from acute to chronic. While a number of medical treatments have emerged in the last few years, no one treatment helps everyone, and in some cases, treatments that work for a while stop being helpful.

Many doctors feel defeated by Fibro. It’s complicated to treat and Fibro patients are frequently ill. Many physicians are now referring Fibro cases for CBT. This is a great step and can be the key to successful management, even cure. So, how does it work? Let’s take a look:

Now, all of these treatments can be helpful. A combination of these treatments may be the ideal cocktail for lifelong management of Fibro symptoms. However, if the patient is like most of mine, they are not in either a mental or physical state to pursue any treatment that involves getting up out of bed. As it is presented, this treatment model overwhelms the Fibro sufferer with guilt, as they now know how many things they are not doing to help themselves, in addition to being in constant pain. This compounds depression and keeps people in bed.

So, practitioners would be more effective if they learned to think about the treatment model differently. The central goal is to improve the person’s quality of life, which begins with increasing basic level of functioning. When a person is in extreme pain, can’t sleep, and is also depressed, it is not likely that person will be able to get to the gym. So, here is my alternative treatment model:

In this model, the therapist focuses on helping the patient recognize destructive patterns of thought and behavior that keep them stuck.

People often ask me if I believe Fibromyalgia is “all in your head.” I don’t. I think pain and suffering in the body are real. I do believe that there is an emotional/psychological component though, and often the gateway to successful treatment is through the thoughts and feelings. This is also why traditional western medicine is not very successful as a treatment model.

Fibromyalgia is a complex condition, but it can be treated and managed well. A word of caution, though: If someone tells you they have the one cure that works for everyone, try someone else. It’s just not true. But we’ll keep at it until we find one that works for you.

(this post first appeared on Get Help Israel)

Depression with FMS and CFS

Depression can be viewed as both a symptom of fibro and a co-morbid condition. Often when a teenager is finally referred to me for fibro he will report a long-standing depression. Childhood onset depression is slippery and often overlooked. Interestingly enough, symptoms of depression in children and teenagers can include vague aches and pains,[1] particularly headaches and back pain often associated with fibro. As a co-morbid condition, depression is virtually indistinguishable from fibro. Chronic pain and illness are depressing. The question may be whether fibro is a symptom of depression or depression a symptom of fibro, or whether they are simply partners. In either case, it is important to note:

-       Fibro symptoms are known to be alleviated in many cases by SSRIs (like Prozac), SNRIs (like Cymbalta) and other anti-depressant groups[2]

-       SSRIs can cause detrimental side effects and suicidal ideation

-       While psychodynamic therapy might help adults with depression, it is not a good therapeutic choice for an adolescent. Go with CBT.

-       Ritalin can cause or exacerbate depression in teens[3]

-       A severe depression may require hospitalization

 In every case, depression should be taken seriously; it's a serious matter.

---

[1] http://www.mayoclinic.com/health/teendepression/DS01188/DSECTION=symptoms Your adolescent - depressive disorders. American Academy of Child and Adolescent Psychiatry. 

[2] http://www.scientificamerican.com/article.cfm?id=new-study-antidepressants-fibromyalgia

[3] Talking Back to Ritalin, Revised : 
What Doctors Aren't Telling You About Stimulants and ADHD
by Peter Breggin, M.D.  Perseus Books, 2001

Diagnosis: Sick of It

Boundary issues

There are a few common themes with young fibro patients, and this is one: Weak boundaries. They tend to be very caring, very empathic with their friends, siblings, parents. They are the family peacemakers, the one the other family members count on to be solidly supportive at all times. Parents see them as very intelligent, caring, hard working, intense. This is the child who cannot let it go. Often the phenomenon of adolescent onset illness can be attributed to a specific stressor; SATs, death of a loved one, illness or absence of a parent; the teen is unable to stop the stressor at the surface and allows it to penetrate her actual physical being. It can also be triggered by an upcoming event; adulthood. This sounds oversimplified. More often than not, however, I see a young woman, 17 years old, in the prime of her life, bright, talented, friendly, pretty, now lying in bed for months at a time. This is simply not a coincidence. The responsibilities of adulthood are daunting enough; for the particularly sensitive adolescent, the competition and drive required to succeed can be so emotionally overwhelming that they manifest physical symptoms. A child will not achieve his developmental task of individuation while lying in bed, needing his parents’ care and attention! This is a complex psychological and medical picture. If your teenager is so stressed out that she is making herself sick, CBT is a good place to start.

Building Trust With Practitioners

I recently treated a teenager who had learned to mistrust her doctors. Though she clearly was suffering from a severely debilitating case of Fibro, many of the physicians she had consulted had been derailed by her obesity. Instead of viewing her weight as a symptom (one of many) of Fibro, the doctors had decided the presenting pathology was obesity. Not only was this unhelpful to the diagnostic process, it delayed treatment and was humiliating and harmful to the already suffering child; somewhere between insensitive and negligent, at the very least it was not good medicine.

As with all things adolescent, trust is imperative in the treatment of Fibro/CFS. The more information the doctors have, the more effective the treatment process will be. The key to gleaning pertinent information from the adolescent patient is good listening. If she feels heard and taken seriously, she will tell you what you need to know. If he feels stupid or judged, he will shut down. In the famous words of Sean Covey (adult son of "7 Habits" author Stephen Covey): Listen more than you talk. You have two ears and one mouth. Duh!

All in your head?

Psyche and Soma

Fibro is, in the strictest sense, psychosomatic; in other words, there is a clear connection between the mind and body. Stress exacerbates symptoms; relaxation and stress reduction alleviate symptoms. However, this is not to say that the pain is not real, or, as many of my cases have been told, “all in your head.” If this were the case, heart disease, stroke and ulcers could also be deemed psychosomatic. It is abundantly clear to the suffering adolescent that stress affects her symptoms. It is in the best interest of all the practitioners involved to not only understand and acknowledge this, but to strengthen awareness of the mind-body link throughout treatment.

While practitioners have come to understand that Fibromyalgia is a real syndrome, there is a social phenomenon that perpetuates the belief that it is a “soft” diagnosis. This myth is often then reinforced by the absence of Fibro’s most common presenting symptom (pain points) in children and teens. The diverse and often varying or shifting symptoms in adolescent onset Fibro further confuse many practitioners. 

The next step is to assemble a treatment team. 

If the teen does not trust the PCP, it may be necessary to find her a doc of her own. In choosing a physician, consider the following statement; Fibromyalgia hurts. It really, really hurts. If the PCP suggests the symptoms are not real, or are in some way exaggerated, this is an indication that this doctor may not be appropriate for your treatment team. Fibro and its symptoms are largely subjective and self-reported. So, Fibro must be treated in the spirit of the great truism of mental health, “everyone’s pain hurts.”

The core of the treatment team should be a cognitive behavioral therapist.

Next: How can CBT help?

Diagnosing a fatigue illness in a teenager

We all know that many teenagers spend a lot of time sleeping. This is not an illness, this is a fact of rapid growth, biorhythms and stress that characterize adolescence. But what if your teen can't get out of bed? Misses school for days, weeks, even months at a time? Complains of vague aches and pains, but never seems to be REALLY sick? He or she could be suffering from adolescent (or childhood) onset FMS or CFS. Truly, it is hard to know.

The diagnostic criteria for FMS, according to the Mayo Clinic, FMS can be diagnosed by presence of 11 0f 18 tender points on the body. There are a number of other symptoms that may or may not be present as well, including:

v    Chronic headaches

v    Migraines

v    Vague aches in arms and legs

v    Sore throats

v    Low-grade fevers

v    Hair loss

v    Weight gain

v    Sleep disorder and non-restorative sleep

v    Fatigue

v    Depression

v    Bladder/bowel pain, urinary frequency

v    Sensitivity to light and/or sound

v    Jaw clenching/TMJ

With teenagers, it's a little more complicated. Very often the main diagnostic symptom of pain in specific places is not present. This fact creates a very confusing picture for both parents and physicians, often leading to misdiagnosis, non-diagnosis and prolonged suffering. As with adult onset FMS or CFS, the illness can follow a specific stressor or more severe illness, or a prolonged period of mild depression and /or vague complaints.

The unfortunate reality is that the diagnosis of FMS or CFS is something of a guessing game, and the guessing involves a process of elimination. (Headaches? Check iron, vision, allergies, blood pressure, etc. ) It is a laborious and frustrating process.

So, if your teenager is not getting out of bed, even for things they love to do, speak to your doctor. The doctor will order a series of standard blood tests, including thyroid function. Once the doc has eliminated any number of life-threatening or serious medical conditions, then we take the next step.

Next time: After the Diagnosis: Now what?