Of all the symptoms of multiple sclerosis, fatigue is, for me, the most debilitating and the most misunderstood. At times, after a good night's sleep, I can barely pull myself out of bed. There are days when I drag around with no energy available for any activity. If I were in a wheelchair, I would accept this better, but my legs still work--just not quickly and not all the time. Fatigue is my silent and invisible nemesis. An article in the Multiple Sclerosis quarterly report (Volume 24, Number 2, Summer 2005) written by Sandra Schmidt Leach, BSM, MA, and Denise Campognota, MD, MS, explains today's understanding of this familiar culprit, and outlines various strategies we can use in dealing with it.
I am one of the 75-90 % of MS sufferers who continues to experience the debilitating effects of fatigue. Fatigue, more than being tired, is defined as a state with reduced capacity for work following a period of mental or physical activity. It quickly upgrades to exhaustion. Fatigue in MS is easily confused with other symptoms of MS, like weakness, spasticity, cognitive impairment, and depression. In my experience MS fatigue causes these other symptoms. Since it is difficult for people who do not suffer with MS to understand this very different type of fatigue, there are specific distinguishing characteristics. MS fatigue worsens in heat. It prevents sustained physical functioning. It comes on easily and without warning. Fatigue interferes with responsibilities, and causes frequent other problems such as cognitive impairment. For me, fatigue caused by MS is like moving through a strong ocean current. An effort is made with every step. Often I simply stop, hold my arms out perpendicular to the ground regaining my balance, and then mentally will each foot into movement.
How can those of us who experience this symptom better deal with it? The authors share different self care strategies that I use. Even when I feel well, I use my handicapped parking sticker and the electric cart supplied by stores. Often I take my rollader walker from the truck of my car for use whenever I'm at the mall. I sit when dressing and folding laundry. I use the microwave, rather than the oven, and prepare meals as easily and quickly as possible. Sometimes I use paper plates to avoid washing dishes. Pushing the vacuum is difficult, so I have hired a cleaning service, but if that is not possible I rest every few minutes between chores.
I have found that fatigue affects my driving. Therefore, I only drive when I am rested and for short periods of time. The car seat and mirrors need to be in the proper adjustment and the air conditioner on at all times. Setting priorities is most important for anyone who suffers with any illness. Occupational therapists can evaluate and share new methods for each individual case.
Even though, I know that this MS fatigue is not my fault, I sometimes wonder if I'm just lazy, using my condition to avoid work. What is it about Multiple Sclerosis that causes this sever tiredness? No one knows. The best we can do right now is to admit the reality of this symptom, change what we can to make our lives easier, and maintain a positive attitude.
So, is there a magic pill, diet, or exercise plan that can help? Yes and no. Nothing will cure Multiple Sclerosis, but a healthy life style helps. Several years ago, the FDA approved the drug Provigil for use in people who suffer with Narcolepsy, so MS doctors prescribed it for their patients. I find that it does help. I also drink lots of caffeine and eat chocolate, but those are not accepted scientific means of dealing with MS fatigue. I do what I can.