MS and Anxiety  by J. Lamar Freed  updated 11/7/2004
J. Lamar Freed, Psy.D. is a clinical Gero-psychologist practicing in the northern suburbs of Philadelphia.  He has been diagnosed with MS since 1993.
Many discussions about Multiple Sclerosis (MS) include questions and comments about depression. Anxiety may be mentioned in that discussion as an adjunct, but may be seen as a separate entity in its own right.
Yet anxiety is something that people with MS very frequently  experience, either in the normal course of events or due to specific problems related or unrelated to the disease. Indeed, research indicates that 90% of people with MS experience anxiety.

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).
In this article I want to discuss how anxiety can effect people with MS. I will also review the categories of anxiety used by mental health professionals in diagnosing and treating anxiety in all its manifestations. But let's start with a clear definition. 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).
Most people get anxious
Anxiety touches us at many levels.  Brides and grooms are usually anxious before the wedding day.  .A speeder is generally anxious when the lights of the police cruiser start flashing in the rear view mirror.  One can be anxious before an argument, before a test, before the big game or before speaking in public. The anticipation of any bad news or unwanted event can cause anxiety and like everyone else, people with MS have all of these anxieties.
When people get anxious there are often physical events that go along with it.  These can include muscle tension, trembling, stomach upset (or butterflies), nervous tics, and many others.  Not all of these symptoms of anxiety get to be bad enough to merit the attention of a mental health specialist.   It is usually only when these symptoms cause unremitting distress or interfere with the quality of a persons life that one calls in professional help.
MS makes anxiety reasonable
People with MS also have other causes of anxiety that 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 people with or without MS. With cancer, for example, or heart disease, the fear of death can cause significant anxiety.  WIth AIDS people can be afraid of contagion.  Fortunately worries of whether the illness will be fatal or contagious are not shared by people with MS -- not after good information has been obtained.
Nevertheless, MS offers several unique reasons to cause anxiety. For many, it is a recurring disease. It goes into remission and returns in relapses. For others, it is a progressive disease, steadily reducing a person's abilities. In all versions of the disease, predictability is very low. 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 the symptoms that result from it may make themselves known. The fact that this is the case for MS is often cause for 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 with MS have reduced anxiety because their particular version of MS follows a certain pattern, but many people with MS do not have this experience. The anticipation of a random return of the illness is a significant cause of anxiety.
A second substantial cause for anxiety with MS is the progressive nature of its course and the accompanying concern about prognosis. This is often the first big question brought to discussions about MS by the newly diagnosed. What are the chances for getting a "good" version of the disease, versus a version that would require a wheelchair in five or even one or two years? What percentage of people with MS can work for the rest of their lives? What is going to happen to me? These questions cause a  great deal of anxiety, made worse by the fact that there are no clear answers.
Equally anxiety-provoking is the often lengthy diagnostic process that accompanies 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 which cause anxieties of their own..
Another time of heightened anxiety is when a new symptom appears. This can cause fear or panic. What does this new symptom mean? How long will it last? Will it get worse? Will it be permanent?  A single new, perhaps even innocent symptom can trigger a flood of old anxieties.  Will I be able to keep working?  Can I support my familyl? WIll I be able to walk? Is this the symptom that signals a drastic worsening of this disease? Being diagnosed with MS brings fear to the fore, harboring the anticipation of negative events.
Ninety percent of people with MS suffer from anxiety
When a negative or dangerous event is anticipated, the body can respond in 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.
For many reasons, the experience of anxiety is understandable when one must confront MS.
This is the system implicated in anxiety. When the system is engaged, panic results. Partial engagement of the system can cause other 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.
Anxiety can be a valuable signal
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 if I do too much. 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 began. I made a comment to my wife that I probably shouldn't be out in the heat. She agreed and told me to go in. I kept working. But my anxiety worsened and I started thinking "you shouldn't be doing this." "It's to much for you."  Finally when my knees started notably wobbling after about 20 minutes, I 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.
Simple ways to manage anxiety
If we are anxious about symptoms, there are some things that help minimize or manage them safely. Developing a plan to manage one's particular version of MS can be very helpful in controlling anxiety.  Learning how to deal with fatigue effectively is a particularly helpful way to keep anxiety at bay.
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. 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.
Don't ignore more serious signs of anxiety
Sometimes anxiety gets out of control. Someone with a heightened fear of relapse can live in constant dread of the next returning symptoms. Anxiety can paralyze. Staying too long in a state of anxiety can cause serious digestive problems. Muscle aches and other discomfort can be exacerbated. It 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.
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.
There are many distinct diagnostic labels given to varieties of anxiety.   They range from anxiety that reflects a period of adjustment and is expected to resolve with support and time, to more serious disorders like obsessive-compulsive disorder, that can be life long and debilitating.  People with MS are, of course, not immune to any one of these disorders, but often their anxiety falls into the catagory of adjustment, or the exacerbation of agoraphobic or social phobias that  may be exagerated because of the life changing conditions of their particular version of MS.
Categories in DSM IV:
     Adjustment disorder with anxiety
     Adjustment disorder with mixed anxiety and depression
     Panic disorder without agoraphobia
     Panic disorder with agoraphobia
     Agoraphobia wihout history of panic disorder
     Specific phobia
     Social phobia
     Obsessive compulsive disorder
     Post traumatic stress disorder
     Acute distress disorder
     Generalized anxiety disorder
     Anxiety disorder due to a general medical condition
     Substance induced anxiety disorder

Of particular concern is when symptoms of anxiety overlap with the physiological symptoms that can be cause by MS.  Symptoms of anxiety may come from certain strategically occurring MS lesions. In other words, the anxiety is actually triggered by a physiological event caused by MS. A generalized anxiety disorder may have MS as part of its causal configuration. Social phobias or panic disorders can also be exacerbated by  MS lesions and can go beyond the reaction someone with MS has to the threat to their wellbeing that the illnes represents.
Medical symptoms that can come from anxiety:

pounding heart
accelerated heart rate
trembling, shaking
shortness of breath
feeling of choking
chest pain or discomfort
nausea or abdominal distress
dizziness, unsteadiness
feeling lightheaded or faint

Importantly, panic attacks and other forms of anxiety often produce symptoms very like those of MS: numbness or tingling sensations. When these symptoms present themselves it is important to consult a physician. If no physical cause is found and it is thought to be the result of anxiety, treatment by a mental health professional is in order.
Anxiety can be treated successfully
Anxiety is often caused by MS and its symptoms and our adjustments to the changes it forces us to make. 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 themselves. 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.