Fibromyalgia and Disability

Fibromyalgia is considered a functional disorder with unknown etiology and unclear pathophysiology. It's not well understood because there is little objective information to support the physical and psychological impairment that affected individuals report. This often becomes a challenge for individuals that feel disabled by the disorder and try to prove that the disorder prevents productive and meaningful work, so they qualify for disability benefits. Fibromyalgia is characterized by complaints of widespread musculoskeletal pain, fatigue and poor sleep, cognitive and psychiatric symptoms, headaches including migraines, and a variety of other symptoms. With or without psychosomatic symptoms, depression and anxiety are common in fibromyalgia (Ghiggia, et al. 2017) and should always be assessed when evaluating the presence of and effects of fibromyalgia. Individuals with fibromyalgia experience a heightened response to stimuli. Mild stimuli can be perceived as severe pain, or at least burdensome. Stimuli can be perceived as much greater than other people would expect, impacting an individual's perception of what they are capable of doing, and therefore their overall function becomes limited. Alexithymia, or the inability to identify or verbally describe feelings, is also prevalent in people with fibromyalgia.

The CDC reports that fibromyalgia in the US affects approximately 2% of the adult population, although fibromyalgia awareness groups estimate the prevalence to be two to three times that. A physician seeing 20 patients per day has nearly 5,000 patient encounters per year, which by straight odds would be about 100 patient encounters per year. Persons with fibromyalgia tend to be higher users of healthcare though because they have troublesome symptoms that persist despite physician's best efforts. Patients with fibromyalgia are memorable to physicians because they are a challenge. The challenge being that we are generally not well equipped to make the patient with fibromyalgia a happy or at least a satisfied customer. Doctors like to fix or at least help people. With the limited time we have with patients, the challenges persons with fibromyalgia present with, our own understanding or misunderstanding of the disease and our personal limitations to make a difference can make the entire experience frustrating for both the doctor and the patient. Unfortunately, there are many times that the individual with fibromyalgia returns for a follow up visit without any indication of improvement, feeling discouraged, or even having worsening or new symptoms.

Individuals with fibromyalgia may recognize that there are many times when they can perform essentially any function. Often there are concerns or even fears that there could be consequences of increased pain and fatigue as a result of doing something. This fear and anticipation of feeling bad can keep the individual from fully engaging in daily activities, and is in essence functionally limiting, but only by self-imposed limits. When consequences of pain and fatigue are worth the reward in participating in an activity, the person with fibromyalgia can generally overcome a lot of hesitancy. The result may be pain and fatigue, and if severe enough, it could cause a feeling of regret and make it less likely that the individual will participate in a similar activity in the future. The challenge becomes keeping the individual with fibromyalgia as active as possible, at home and at work. When the individual with fibromyalgia is active, fatigue, aches, and pains give short-term feedback that the individual feels they did too much and should do less. There is long term benefit in remaining active including increased physical conditioning. With increased activity, there can be progressive improvement in symptoms and the opposite is true when individuals allow themselves to restrict activity to avoid discomfort. Short periods of rest does allow for recovery, but rest also allows for deconditioning and needs to be kept to a minimum. As an individual becomes more deconditioned, they actually feel worse and their physical fitness is now part of why they cannot function like they used to. In regards to returning to work, when an individual is off work for an extended period of time, even weeks, let alone years, new routines are developed and the day becomes filled up, making the idea of returning to work difficult for the individual to believe that they can. The negative feedback experienced from activity with fibromyalgia, the deconditioning that occurs with rest and inactivity, and the psychological effects of filling up a day with a routine other than a work day make returning to work extremely difficult, every time any break is taken from work for fibromyalgia.

A person's average daily activity represents their overall physical fitness. Just as in athletics, it is recommended to increase the amount of activity gradually over time, with short rest periods. When a relatively inactive person has a very active day, the pain and fatigue following may provide too much negative feedback, and require too much recovery time. It is therefore better to have a stepwise program of activity that the individual can adapt to and see progress that will encourage continued improvement. It is generally recommended for all adults to have at least 30 minutes a day of moderately vigorous activity per day for five days per week. It is really important to look at an individual's current activity level to determine what is an appropriate exercise program.

I have assessed many individuals with fibromyalgia. Determining their function is not a straight forward task, and fairly often I see physicians go to extremes of recommending no work, which can be counterproductive. A recommendation of no work is agreeing with the individual that they are disabled and also that they should not be active, which as I described above can be a downward spiral. There are also physicians that don't seem to understand, or have doubt about the validity of the symptoms associated with fibromyalgia and make recommendations that are ultimately going to set the worker up for failure, frustration, and probably pursuing litigation. Both the employee and employer are best served with recommendations that are reasonable and achievable. As has been noted in other studies, Fizcharles et al. (2016) noted increased disability in patients with fibromyalgia that previously had more physically demanding jobs. Job reassignment to lower demanding jobs, or making reasonable accommodations may also serve the employee well. Work at any physical demand level, even a sedentary position, is likely keeping the person with fibromyalgia more active than if they were not working and on disability, which is better for their overall wellbeing and health. Muller et al. (2017) found an association of full time employment and fewer health problems in individuals with fibromyalgia, and therefore also recommend health promotion and vocational rehabilitation interventions to assist individuals to stay at work longer.

A functional assessment should be based on what the individual can actually perform at that point in time. Even when there are valid medical and behavioral reasons why an individual may believe he or she cannot perform some of these functions regularly, it doesn't mean that they can't. It is also reasonable to expect that an individual with fibromyalgia can improve functionally, especially if provided the opportunity to increase the total activity gradually.

If you have questions about contents of this article, please contact me at Jerald.Cook.MD@gmail.com.

If you are interested in learning more about fibromyalgia, I recommend the following online resources:

American College of Rheumatology

National Fibromyalgia and Chronic Pain Association

National Institute of Arthritis and Musculoskeletal and Skin Diseases

References:

Ghiggia, A., Torta, R., Tesio, V., Di Tella, M., Romeo, A., Colonna, F., Geminiani, G., Fusaro., E., Batticciotto, A., Castelli, L. (2017). Psychosomatic Syndromes in Fibromyalgia. Clinical and Experimental Rheumatology, 35, 106-111

Fitzcharles, M. A., Ste-Marie, P. A., Rampakakis, E., Sampalis, J. S., & Shir, Y. (2016). Disability in Fibromyalgia Associates with Symptom Severity and Characteristics. The Journal of Rheumatology, 43, 931-936.

Muller, V., Chiu, C., Tang, X., Eagle, D., Peebles, M. C., Kanako, I., Brooks, J., & Chan, F. (2017). Association of Employment and Health and Well-Being in People with Fibromyalgia. Journal of Rehabilitation, 83, 37-43.