By Ed Lash
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Having MS is like the weather. We have our ups and downs; we have good days and we have bad days.
Of course, other people have these experiences as well, but with MS it seems to be more pronounced and more confusing as to the “whys and wherefores.” MS is a mystery disease and a large part of that mystery is involved in the question of why symptoms come and go.
A true MS exacerbation (also flare-up or attack) is the result of active inflammation in the central nervous system (CNS). Damage to the myelin covering of CNS nerve cells may result from this inflammation, and the extent of damage varies significantly with each person and with each attack. When the immune system recalls the white blood cells from the CNS (with or without medication), inflammation will disappear and symptoms will usually improve somewhat. Over a longer period of time, as some healing of the myelin takes place, the remaining damage may or may not fully recover depending on the extent of damage and conditions the body is faced with during the healing process. The existing demyelinated (scarred or damaged) area may often function reasonably well under ideal conditions but may no longer adequately conduct a signal under certain varying conditions, and circumstances peculiar to the individual.
These fluctuations are referred to as “mini-relapses” by some people with MS; the medical term is “pseudo-exacerbations.” Mini-relapses may last for minutes, hours or for the whole day, but as long as they last no longer than 24 hours, additional inflammation or damage does not occur, and therefore are not considered to be true exacerbations.
Heat, humidity, infection, exhaustion, pain, injury, stress, allergy, alcohol, and trauma have often been mentioned as possible culprits that may bring on a minirelapse, but it often depends on what the particular individual’s system is sensitive to. Certain medications, including diuretics and antihistamines, increase the risk. Some people have also mentioned weather changes as triggers, while some women seem to have symptom fluctuations at certain times during their monthly cycle. An individual who has had optic neuritis may actually lose vision in very bright light, and see better when lighting conditions are dimmer. In such cases, the wearing of sunglasses on bright days outdoors, or even in brightly lit rooms, may help vision.
Regardless of what may provoke a relapse for you, however, it’s always wise to take precautions and alleviate the situation as best you can and as soon as possible, especially with good medical care when needed. A short-term infection, for example, usually invokes short-term symptoms, but a prolonged infection may possibly trigger a true exacerbation with new symptoms, or more serious impairment of previous symptoms.
Other often-mentioned suggestions for managing symptoms are:
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• Maintain the self-help techniques that work best for you.
• Learn to pace your activity level; listen to your body.
• Drink a sufficient amount of fluids, especially water.
• Avoid strenuous exercise, especially in hot weather.
• Eat properly; keep yourself in good physical shape.
• Read and learn about MS; talk with your doctor.
• Learn to relax; maintain regular sleep habits.
• Keep a normal but moderate lifestyle.
• Join a support group.
As mentioned earlier, life with MS is full of ups and downs. Just because MS has no cure at this time does not mean there is nothing we can do, but it does mean that we need to learn what lifestyle changes and/or strategies should be developed for success in managing our disease.
Note: Self-help is not intended to replace medical treatment. It should be used together with the help of appropriate professionals in a team effort.
Ed Lash is a United Spinal member who lives in Trumbull, Connecticut. This essay is adapted from his book, MULTIPLE SCLEROSIS, Self-help . . . A Patient’s View (Vantage Press 2001). He can be contacted by e-mail via edlash.ms.selfhelp@juno.com, or by phone at 203-445-0118.
