Multiple Sclerosis and Anxiety 2013

by J. Lamar Freed, Psy.D.

Many discussions about Multiple Sclerosis (MS) include questions and comments about depression. Anxiety may be mentioned in that discussion, not seen as a separate entity in its own right.

Yet anxiety is something that people with MS often experience, either in the normal course of events or due to specific problems related or unrelated to the disease.

Anxiety is “distress or uneasiness of mind caused by fear of danger or misfortune.” It is “a state of apprehension and psychic tension occurring in some forms of mental disorder” (Random House Webster’s Dictionary).

Anxiety shows itself in many ways. It can include muscle tension, trembling, stomach upset (or butterflies), nervous tics, and many others. Anxiety often occurs because someone expects something bad to happen. Small wonder that 90% of people with MS get anxiety.

Anxiety touches us at many levels. The anxious bride. The speeder stopped by a policeman. Getting anxious when expecting an argument, or before speaking in public. The expectation of a bill or more than one bill. A test or an important meeting can cause anxiety. Like everyone else, people with MS have all of these anxieties.

But people with MS also have other causes of anxiety, some of which are unique to being ill and specifically to being ill with MS.

People with any illness often have anxieties and worries that haunt them. Fears about pain or debilitation are shared by many people with MS. But worries about a fatal illness or a contagious one is not something people with MS have, not if they have gotten good information.

MS offers several unique reasons to cause anxiety. For many, it is a recurring disease. It goes into remission and returns in relapse. For others, it is a progressive disease, with steadily reducing abilities. All versions of the illness are hard to predict. That means on any day, at any moment, on any morning, the disease can raise its ugly head. A new lesion can develop at random in the brain and new symptoms can develop. This can often cause significant anxiety in people with the disease. What will tomorrow hold? Will I be able to work or shop or pick up my child? Some people find that their particular version of MS follows a certain pattern, but many people with MS do not have this experience.

A second substantial cause for anxiety with MS is the progressive nature of its course and worries about prognosis. This was the first big question I brought to discussions about MS. What are my chances for getting a “good” version of the disease, versus a version that would put me in a wheelchair in five or even one or two years? What percentage of people with MS can work for the rest of their lives? How long will I work? These are scary questions.

Another scary time is when a new symptom appears. This can cause fear or panic. What does it mean? How long will it last? Will it get worse? Will it be permanent? Will I be able to keep working? Is this the symptom that signals a drastic worsening of this disease? Being diagnosed with MS means having to manage these fears.

Sometimes a lengthy diagnostic process can accompanu early symptoms. For many, a clear diagnosis of MS takes many years. For others, the diagnosis is accompanied by many unpleasant, intrusive, and potentially painful medical tests. Each of these has its accompanying anxieties.

For these and many other reasons, the experience of anxiety is understandable with a diagnosis of MS.
When a negative or dangerous event is anticipated, the body can respond in very primitive ways. In the primordial world of ancient history, anxiety resulted when a saber-toothed tiger jumped out from behind a rock, or when a hunter approached his prey. The anticipation of danger causes the body to do a number of helpful things. The body sends adrenaline to the muscles to optimize their functioning. It shuts down nonessential functions, like digestion, so that all energy can be funneled to essential systems. It increases heart rate and breathing, to provide a maximum of oxygen to the muscles. It automatically charges up the fight and flight systems in order to increase chances for survival.

This is the system implicated in anxiety. When the system is fully engaged, panic results. Partial engagement of the system can cause other, less extreme, responses. But it is important to remember that anxiety is not always a bad thing. It saved many of our ancestors and it can be a useful signal for us today.

I went out in the heat to garden for a few minutes the other day. I was anxious about doing so. I had a work day scheduled the following day and the kind of MS fatigue I have carries over into the next day when I overdo. While I was outside, my wife was digging a hole for a tree we had ordered. I got a hoe and began to help her. I was hot, but it was initially pleasant. Then I stumbled slightly and my anxiety increased. I made a comment to my wife that I probably shouldn’t be out in the heat. She told me to go in. I kept working. But I started thinking “you shouldn’t be doing this.” “It’s to much for you.” And my anxiety grew. Finally when my knees started notably wobbling after about 20 minutes, I finally listened to my anxiety and went into the air conditioning.

Anxiety is often a signal to tells us something is amiss. When we know what the signal means and listen to it, it serves an important function. If we are anxious about a meeting, we will prepare more for it, or we will increase attention and concentration to pay attention to nuances we could have missed in a relaxed state.

If we are anxious about symptoms, there are some things that help minimize or manage them safely. Developing a plan to manage a particular version of MS can be very helpful in controlling anxiety.

Sometimes anxiety gets out of control. Someone with a fear of a relapse can live in constant dread of the next returning symptoms. Anxiety can be paralyzing. But chronic anxiety has costs of its own. Staying too long in a state of anxiety can cause serious digestive problems. Muscle aches and other discomfort can be worsened. Anxiety can cause headaches and other symptoms. Anxiety can make us irritable and interfere with our ability to relate comfortably to people who are important to us. When anxiety reaches such proportions, it is time to do something about it.

There are simple ways to manage anxiety that most people with MS should be able to do. Getting the most information about the disease and understanding it as best you can is a good start to keep anxiety reasonable and within bounds. Utilizing the social support available to you by talking with people close to you should also help. When this is not enough, supplementing natural support systems with more formal opportunities for emotional support can also be helpful. People can find an MS support group, a psychotherapist, or other more general support groups. Finding a team of trusted professionals to monitor and provide care for the disease and its symptoms can also go a long way in reducing painful fear and anxiety.

Anxiety is an important feeling. We should pay attention to it. But it can get out of hand and cause substantial unpleasantness. When this happens, a mental health professional should be consulted. Treatments for anxiety range from supportive and cognitive therapy, to systematic desensitization, to flooding and can include a variety of very effective medications. Each treatment is personalized so that the particular kind of anxiety is targeted.

Anxiety is often caused by MS and its symptoms. To a certain degree this is unavoidable and even appropriate. MS is a real, dangerous, and often debilitating disease that offers much to fear. But the fears, worries, and anxieties that can come as a result of MS also can cause damage. Much can be done to manage these anxieties. Leaving them untreated or ignoring them is a mistake that can have both immediate and long term consequences.


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