Depression, Fibromyalgia and Chronic Fatigue Syndrome-from a Personal and Professional Perspective
Fibromyalgia Solutions, Winter 2016 issue
A common experience of many people who are struggling with FM/CFS is going to the doctor to find out what’s wrong with them, only to be told it’s all in their head. Because a physiological cause cannot be readily determined, providers may assume they are depressed and suggest a referral to a psychiatrist. This is insulting, dismissive and can even be traumatic. I am an experienced mental health professional and this is the response I received from the majority of health care providers I consulted about my chronic widespread pain, debilitating fatigue and drastic change in functioning/energy level-not to mention my sudden sensitivity to seemingly everything in the environment as well as frightening autoimmune issues. This reaction from health care providers only contributes to the psychological pain related to dealing with chronic pain and fatigue.
Being a clinical social worker and psychotherapist, I knew my symptoms weren’t all in my head. But I had to agree that I was depressed. The depression was a result of being sick, stressed and overwhelmed by multiple family and work obligations, while at the same time trying to figure out what was going on with my body. I was used to having plenty of energy and being able to push through anything when I didn’t. I was accustomed to being able to exercise and get an energy boost when I needed one. I was known for working fast and efficiently at home and on the job. My usual coping skills were failing me because I couldn’t just willpower my way through the pain, fatigue and brain fog. I felt as if I no longer had control over my own life and I wasn’t sure the people closest to me even understood what I was going through. I felt isolated, angry and hopeless at times. I was also experiencing grief and sadness related to how much my life was now restricted by my illness.
It was hard for me to admit I was depressed because I didn’t want to give any support to the doctors who tried to dismiss me as a “head case.” However, it was essential that I address the depression as one component of the chronic illness I was struggling to manage. Symptoms of depression have some overlap with symptoms of FM/CFS and they can sometimes be masked by the physical symptoms. There is a tendency to focus on the physical symptoms, but not the underlying depression. I realized I needed to tackle both. Depression, disability, and chronic illness form a vicious cycle. Chronic medical conditions can bring on bouts of depression, which, in turn can impact treatment. I discovered emotional and social support was one of the most important elements I needed on both fronts and it was especially critical to getting a handle on my depression symptoms. Support from peers and professionals who were compassionate and knowledgeable about my symptoms have made the biggest difference in my own treatment and recovery.
Symptoms of Depression
A person who suffers from a major depressive episode must either have a depressed mood or a loss of interest or pleasure in daily activities consistently for at least a 2 week period. This mood must represent a change from the person’s normal mood; social, occupational, educational or other important functioning must also be negatively impaired by the change in mood. A major depressive episode is also characterized by the presence of 5 or more of these symptoms:
- Depressed mood most of the day, nearly every day, as indicated by either subjective report (e.g., feeling sad or empty) or observation made by others (e.g., appears tearful). (In children and adolescents, this may be characterized as an irritable mood.)
- Markedly diminished interest or pleasure in all, or almost all, activities most of the day, nearly every day
- Significant weight loss when not dieting or weight gain (e.g., a change of more than 5% of body weight in a month), or decrease or increase in appetite nearly every day.
- Insomnia (inability to sleep) or hypersomnia (sleeping too much) nearly every day
- Psychomotor agitation or retardation nearly every day
- Fatigue or loss of energy nearly every day
- Feelings of worthlessness or excessive or inappropriate guilt nearly every day
- Diminished ability to think or concentrate, or indecisiveness, nearly every day
- Recurrent thoughts of death (not just fear of dying), recurrent suicidal ideation without a specific plan, or a suicide attempt or a specific plan for committing suicide
Support Tips
Living with a chronic illness is a challenge (to say the least!) and it’s normal to feel grief and sadness at times. But if these feelings don’t go away, or you are having trouble sleeping or eating, or you’ve lost interest in the activities you normally enjoy, please get help right away.
Here are some suggestions for managing your FM/CFS and avoiding depression:
- Maintain social connections and try not to isolate yourself. Reach out to family and friends. If you don’t have a solid support system, take steps to build one NOW! Ask your healthcare provider or therapist about support groups and other community resources.
- Learn as much as you can about your condition. Knowledge is essential when it comes to information about your treatment options and keeping your sense of independence and control.
- Make sure that you have medical support from compassionate providers you trust and can talk to openly about your questions and concerns.
- Keep doing the things you like to do, as much as possible. Staying connected will help your self-confidence and sense of community.
- Support groups are a very useful sharing experience. They provide an environment where you can learn new ways of dealing with your illness. You may want to share approaches you have discovered with others. You will also gain strength in knowing that you are not alone.
- Individual counseling can be a very healing and supportive one-on-one experience in which you are able to express feelings you have about your illness and its impact on your lifestyle and relationships.
Cognitive Distortions and Chronic Fatigue/Pain
National Fibromyalgia & Chronic Pain Association newsletter
Let’s be honest. Sometimes our cognitive and emotional symptoms can be nearly as awful as our physical pain and fatigue. On those really bad days, when every joint and muscle feels sore and painful and when we can barely drag ourselves out of bed, we can be difficult people to be around. We’re not usually the type to complain or whine about our condition. We often avoid talking about our symptoms at all due to having heard all the well-meaning but useless advice from friends and family that we can stand. And we definitely aren’t looking for pity. The fact of the matter is this: chronic pain and fatigue (two of the most prominent symptoms of CFS/FM) really do a number on our mental and emotional functioning.
Brain Fog/”Fibro Fog”
We’ve become used to dealing with concentration and memory issues also known as brain fog or “fibro fog” that accompanies CFS/FM. Brain fog can be one of the most frustrating and embarrassing aspects of living with severe pain and chronic illness. Some of the common signs of fibro fog include difficulty with word finding or substitution, forgetfulness, limited concentration, loss of short-term memory, and occasionally even brief episodic disorientation.
Emotional Distress
Emotional distress is another significantly challenging issue related to CFS/FM. Considerable research has established that emotional distress frequently accompanies chronic pain. It is related partly to specific symptoms, such as sleep disturbance, that are common in chronic pain. Perhaps more importantly, mood change and chronic stress are not surprising because of the restrictions in daily activities, disruptions in role functions, losses of sources of satisfaction and changes in one’s sense of identity and self-esteem that can occur because of chronic pain.
Cognitive + Emotional + Stress
So, together brain fog and emotional symptoms can make us more prone to irritability and cause difficulty with decision-making. We tend to be less patient with people and the overall ability to prioritize becomes compromised. Clarity and insight can be become significantly reduced, especially if we’re triggered by a negative event or dealing with an unexpected stressor. Stress, in particular, can put us over the top resulting in reactivity and defensiveness. We may become more likely to act without thinking, make hasty/impulsive decisions and say things we later regret. We risk doing damage to our relationships with loved ones in this state. Our self-esteem also erodes when we impulsively act out in ways that are negative or harmful.
When we are in crisis, under stress (and dealing with a chronic condition like CFS/FM is stressful!) or depressed, it is common for our thoughts to be anything from slightly skewed to exceptionally negative at times. When we are in an emotional state and/or unsure of the accuracy of perceptions, it can be beneficial to examine our thought patterns. A quick and easy way to do this is to review a list of Cognitive Distortions. This is a helpful inventory which can be used to evaluate your mental clarity before making important decisions or responding to something or someone which has triggered strong emotions. Dr. Aaron Beck first proposed the theory behind cognitive distortions and Dr. David Burns was responsible for popularizing it with common names and examples for the distortions.
Common Cognitive Distortions
1. All or Nothing Thinking: You look at things in absolute, black and white categories. For example, “I won’t fit in” or “I won’t know anyone at the party.” Or if your performance falls short of perfect, you see yourself as a total failure.
2. Mental Filter: You dwell on the negatives and ignore the positives. For example, remembering only the person who didn’t acknowledge your hello as opposed to remembering the dozen people who did respond kindly.
3. Overgeneralization: You view a negative event as a never-ending pattern of defeat. For example, “This always happens to me, nothing ever works out.”
4. Discounting the Positive: You insist that your accomplishments or positive qualities don’t count. For example, “I know I am going to get in trouble because why else would my boss want to talk to me?”
5. Jumping to Conclusions: You make a negative interpretation though there are no definite facts that convincingly support conclusions.
a) Mind-Reading: You assume that people are reacting negatively toward you and you don’t bother to check this out.
b) Fortune-Telling: You arbitrarily predict that things will turn out badly and you feel convinced this is a pre-established fact.
6. Catastrophizing: You expect disaster to strike, no matter what. You hear about a problem and use what if questions (e.g., “What if tragedy strikes?” “What if it happens to me?”). This is also referred to as “magnifying or minimizing.”You blow things way out of proportion (such as a minor goof-up or someone else’s achievement), or you shrink their importance (your own desirable qualities or another’s imperfections. For example, “I was destroyed when those people saw me trip coming up the stairs.”
7. Emotional Reasoning: You reason from how you feel: “I feel like an idiot, so I must be one.”
8. “Should” statements: You criticize yourself or other people with “shoulds,” shoudn’ts,” and “musts.” Includes “have to’s” and “ought’s.”
9. Labeling: Instead of saying, “I made a mistake,” you tell yourself, “I am a complete loser” / “I’m a jerk” / “I’m stupid.” When someone else’s behavior rubs you the wrong way, you attach a negative label to him/her. Mislabeling involves describing an event with language that is inflammatory and emotionally loaded.
10. Personalization/Blame: You blame yourself for something you weren’t entirely responsible for or you blame other people and overlook ways that you contribute to a problem. We hold other people responsible for our pain, or take the other track and blame ourselves for every problem. For example, “Stop making me feel bad about myself!” Nobody can “make” us feel any particular way — only we have control over our own emotions and emotional reactions.
Beck, A. T. (1976). Cognitive therapies and emotional disorders. New York: New American Library.
Burns, D. D. (1980). Feeling good: The new mood therapy. New York: New American Library.
Hart, et al. (2003). Cognitive Impairment in Patients with Chronic Pain: The Significance of Stress. Current Pain and Headache Reports, 7:116-226
Six Strange Signs of Fibromyalgia. From: http://www.everydayhealth.com/fibromyalgia/strange-signs-of-fibromyalgia.aspx.
Sarah L. Schroer, LSCSW has been managing her CFS/FM since 2010. She has over 10 years of experience working as a social worker/therapist in a number of different settings, including outpatient mental health, foster care and the Department of Veterans Affairs. She has a private counseling practice in Overland Park, KS and she specializes in treating individuals affected by chronic illness/pain, sensory processing sensitivity/Highly Sensitive Person trait and trauma/PTSD. Sarah is located at 7270 W. 98th Terrace, Bldg #7, Suite 230, Overland Park, KS 66212, 913-669-1805 www.transforming-care.com.