Mastering Multiple Sclerosis
A Guide To Management

Management Of Exhaustion

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Many MSers suffer from unexplained Exhaustion before the appearance of any specific symptom of MS. They may look fine and function normally, except for Fatigue.

There can be no loss of Sensory perceptions, no Tremor nor Paralysis; but, there is just enough disruption of Brain activity to produce Exhaustion.

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Every thought, every association, every action requires more effort because damaged portions of the Brain can not maintain a smooth chain of command. Picture the Brain as a series of detours.

Neural messages must travel around damaged portions of the Brain, just as highway traffic must make detours. Both use unimproved byways to reach their destinations.

Imagine spending an entire life with such detoured Neural traffic. Imagine the agony of Exhaustion when no definite symptom proclaims MS the cause!

Exaustion may be a measure of the amount of damage to Association Pathways, in the Brain. These pathways facilitate the transfer of information, from one Brain region to another.

We have no direct way of measuring damage to these pathways. The Neurological examination offers, only a gross assessment of the few pathways accessable for examination.

Some MSers suffer no Exhaustion despite significant Paralysis and Incoordination. In such people MS plaques may be confined to pathways that transmit specific movement or feeling.

Maybe absence of exhaustion in these people, means there is little involvement of Association Pathways in the Brain. For such Exhaustion there is no specific treatment, so MSers, must learn to live with it.

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But Spasticity, Depression, Incoordination, Tremor and Imbalance do respond. As you read this chapter try to discover whether your Fatigue may result in part from one of these treatable causes.

If so, get treatment and learn to manage better.

Spasticity:
Have you done everthing you can to reduce Spasticity?

Spastic muscles work against each other because they receive inaccurate information from the Spinal Cord.

As a leg is thrown forward in walking, Spastic muscles on each side of the knee and hip joints contract simultaneously instead of waiting their turn as normal muscles do.

The Spastic leg is pulled in both directions at once. Muscles ache. Walking is slowed. Fatigue becomes Exhaustion.

Because Spasticity causes loss of power, it requires more effort just to stand up. Muscle strengthening exercises help to improve muscle power even though the exercise itself causes some fatigue.

It is important to keep your muscles toned up to their best level of function. The energy you spend on exercise is well spent, not wasted.

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If muscle strengthening exercises are not enough, aids to mobility can keep you active: Wheelchair, Ankle Brace, Canadian Crutch, Walker.

Buy them early for use in times of heavy physical activity. Then they will become old friends and trusted allies against future loss of mobility. If you could use aids to ambulation occasionally now, buy them now.

Function more efficiently now and keep yourself mobile despite advancing disability. Now and then, use a Wheelchair. Save your energy for activities that interest and please you.

Depression:
Exhaustion is a major symptom of Depression. If you are weepy and sleepless, if outbursts of anger express Depression and if Depression causes Fatigue, help is available. Get help pronto and begin to feel human again.

The Tremor and Incoordination of Cerebellar Disease force muscles of trunk and limbs into a zig-zag course.

How much further than it should, does your body move during a day as you dress, work, eat and play? Each zig and zag adds to your Exhaustion.

An electric toothbrush allows the MSer to brush his teeth unassisted despite considerable Tremor.

Sometimes, wrist weights, held on by Velcro straps, can dampen Tremor if there is little loss of muscle power. One or two pound are usually all people can tolerate.

Your Occupational Therapist has catalogs of ideas about aids to arm and hand mobility. If you have useful ideas of control of arm and hand, try them out.

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Some MSers appear normal when they sit in a chair or lie quietly in bed. The voluntary movement of feeding themselves or combing their hair causes Tremor that may become extremely severe.

When they stop, Tremor subsides. This kind of Tremor has not responded to Isoniazid. Other MSers shake during all their waking hours; lying, sitting, working, resting. This Tremor does respond to Isoniazid. If your Tremor is severe and continuous, read on.

You may get help. If your constant Tremor is mild, or if you have Tremor only on voluntary movement, but want to try anyway, read on cautiouslly. Isoniazid is not always easy to use, and can cause serious side effects.

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The major dangerous side effect of Isoniazid is Hepatitis ie, Liver Damage. The development of Hepatitis is not necessarily serious. After Isoniazid is stopped Liver function returns to normal.

Fatal isoniazid Hepatitis has been reported. Isoniazid should not be used for trivial Tremor, and should be stopped instantly if symptoms of Liver Damage appear: gray or yellow bowel movements or frank Jaundice.

If some other symptom suggests Liver Damage to you while you take Isoniazid, call your doctor. Use of any alcohol while taking Isoniazid will increase the risk of Hepatitis.

Because of the danger of Hepatitis, have Liver function studies done on a blood sample before taking the first dose. If there is evidence of pre-existing Liver Damage, do not use this medication.

Once you start treatment, have Liver function studies performed regularly: frequently at first, perhaps every week or two, and then less frequently as you reach your effective dose and gain confidence that your Liver will not be damaged.

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Because there is no definite limit to the risk of Hepatitis, no one can tell precisely how often nor how long to continue Liver function studies.

Most Hepatitis develops early in the course of treatment, sometimes because of pre-existing Liver Damage. This is why it is so important to monitor Liver function frequently as you begin, then less frequently once you have found your safe dose.

The major symptoms of Hepatitis include Loss Of Appetite, Nausea, Vomiting and Jaundice. Bowl movements may lose their normal brown color and become yellow or gray. Bile pigments excreted in the urine turn it dark brown.

The most common side effect of Isoniazid is Sleepiness. This may become so severe that the person cannot be awakened. This is not a serious side effect. If Isoniazid is stopped, the person wakes again.

Some people have become sleepy on as little as 600mg. per day. There is some tolerance to this side effect, so a MSer who becomes sleepy on a given dose, may later be able to take that same dose without trouble.

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When Isoniazid is used as an AntiTuberculous medication, Pyridoxine (Vitamin B6) is also given to prevent damage to Peripheral Nerves. MSers should use Pyridoxine while taking Isoniazid.

The dose is 50 mg per day, regardless of the Isoniazid dose. After all these warnings, you may decide not to take Isoniazid. Do not make that mistake.

If you have serious continuous Tremor Isoniazid can be important to your well-being. If you have mild Tremor or no Tremor unless you are eating or doing some other active movement avoid Isoniazid.

If you decide to use Isoniazid, remember its long biological half-life. Take your dose only once in 24 hrs, not twice or three times a day. Plan to change the dose not more frequently than once every 10 days.

Begin at 300mg each bedtime. Chances are this dose will do nothing for you. Ten to 14 days later, increase the dose to 600mg a day. Ten days after that, begin to observe the effect on Tremor.

If there is no change no sleepiness and no signs of Liver Damage, then go on to 900, 1200, and 1500mg per day, increasing the dose at 10-14 day intervals.

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If there is no change in your Tremor after 10-14 days on the 1500mg per day, you will probably get no benefit from Isoniazid. If there is some change, consider going to higher doses.

But remember, higher doses carry an increased risk of Hepatitis. Do not continue to take any medication, at any dose, if it fails to produce the desired effect.

If you do, you waste your money and increase your risk of side effects. Since sleepiness may make it impossible for the MSer to manage Isoniazid, family members must help with the dosage schedule.

If your MSer goes to sleep can't wake up for meals, stop the Isoniazid. Once your MSer is back to normal, start again if it has been useful, but at a lower dose.

Spasticity is only one cause of Imbalance. Other causes include direct involvement of the Cerebellum and its connections, or interruptions of conscious and unconscious Sensory pathways from muscles, joints and skin.

With no medication to correct Imbalance from these other causes, and only marginal benefit from physical therapy, a set of Canadian crutches can greatly improve your gait and prevent falls.

Sometimes, when MSers fall because of a weak ankle, they mistakenly think Imbalance was the cause. Check Peroneus and Anterior Tibial Muscle strength.

Analyze the reasons for the fall. Were you truly unbalanced, or did the ankle give way? If Ankle Weakness is the cause of Gait Disturbance and Fatigue, get an Ankle Splint for additional support.

What have you done to conserve your precious energy? Do you continue to try to do things as you always have?

Do you believe you should be as productive as you were before you had MS? Just as physically healthy people plan their day's work to fit the time and energy available, MSers must also plan their time and activities to fit available energy reserves.

Are you a might owl who must rise early to get to work? Arrange your bladder management to provide more uninterrupted hours of sleep.

Are you wakeful nights? Can you change your work schedule to allow you to sleep later in the morning and bring work home to do in bed? Can you cut your full time job to part time?

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Do everthing you can to adjust your work to your energy level. Forget goals that require you to pass for healthy. Forget the artificial requirements to have the same normal day you would have had without MS.

Establish your priorities carefully. Then pursue important activities unswervingly and reject those that are less important or burdensome. Make changes in your life deliberately. Treat every treatable cause of Exhaustion. Be constructively exhausted.

MS will change your life. No amount of reading and thinking can change the accumulation of plaques in your Brain and Spinal Cord. But changes in life-style can be made with forethought.

Think ahead and decide which activities are least important to you and abandon them one at a time. Do not allow disability to rob you of important joys.

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Do what you can to avoid early retirement. Although retirement looks sweet through the blur of fatiguing days, it is often bitter once the pressure to achieve is removed.

Early retirement is almost always permanent. It is lonely to be home. Many people are dissatisfied with early retirement. The demands of daily work weigh heavily on everyone, healthy or sick.

Most employers will try to help you adjust your work schedule so you can continue to be productive. If your job, your employer and energy can be coordinated, keep working.

Then , when you can't work any more, find constructive things to do with your time. Keep as busy as your body will allow.

Continued In 02-05