here is the information I reported on last month regarding teleconferences on this theme - I've copied the info on fatigue here - you can read the entire repot at
http://www.medhelp.org/user_journals/show/278310/Fatigue---Exercise-and-Therapy-Tips?personal_page_id=
I hope this helps you to understand the fatigue your partner may be facing.
best, Lulu
The second set of teleconferences was hosted by Shared Solutions and featured Jayne Ward, DO, Associate Professor of Neurology , Michigan State University. Her topic was Fatigue and MS.
She began with discussing attitude and that she knows there are two types of PwMS. The first are those people who acknowledge they have MS , but don’t let it rule who they are and what they do.
The second type is those people who find everything they do is overwhelmed by the fact that they have MS. It sounds like a simplistic approach, but echoes many of our previous discussions about maintaining a positive attitude, even in light of having this crappy disease.
According to Dr. Ward, people with the positive attitude are shown to do so much better than the people who struggle daily with living with MS.
She identified several causes of fatigue, which 80% of PwMS list as their #1 complaint –
1) Normal fatigue. Everyone gets fatigue - from overdoing something, lack of sleep, poor eating habits, etc. She talked about how even PwMS get normal fatigue and that is just part of life.
2) Deconditioning fatigue - this comes from stopping or slowing your activity level.
3) Neuromuscular fatigue is common to MS. This is a motor fatigue that comes from the short circuiting of our systems thanks to the demyelization.
4) Depression fatigue - Dr. Ward said this is not MS specific and can happen to anyone. Some clues that depression is the cause of fatigue is to look at other complaints - if you have problems with sleep, appetite (too much or too little), or somatic complaints, the fatigue may very well be from depression.
5) Lassitude - this fatigue is overwhelming and is the most common type of MS fatigue. She gave the example of you’re on the couch and your house is on fire and you’re debating with yourself whether you are going to move or not.
Dr. Ward said that she recommends all PwMS have a proper sleep study done – that sleep apnea and other sleep disorders are common in the MS population and are under-diagnosed. Seven hours of sleep per night is the minimum amount we need.
She recommends that we keep a fatigue diary and track the schedule - does the fatigue worsen at certain times of the day? Does the temperature affect the fatigue? How does the fatigue onset correlate to our medication schedule? The intent of the fatigue diary is to look at what co-factors might be present with the fatigue.
Strategies that Dr. Ward offered for dealing with fatigue include:
- Rest – schedule rest for the times you know you fatigue. Even if this means just a brief break, give your body the chance to recover
- Control the temperature – heat and cold can affect fatigue. Dress appropriately; perhaps get cooling garments if heat can’t be avoided.
- Exercise- she again emphasized what we know (but it flies in the face of conventional thinking) – exercise really does help with fatigue. She said we should start small – she starts her patients who haven’t exercised regularly on 3-5 minutes of exercise a day. She will then have them add additional minutes each week. She sets a goal of 20 minutes of exercise a day for her patients and it may take months to get there, but she says it is possible. The benefit from exercise includes the release of positive endorphins for our brains.
As with Dr. Karpatkin, the cost of ongoing physical therapy being financially difficult was brought up. Dr. Ward suggested that PwMS request a home therapy prescription from their doctor. This rx will allow you to meet with a physical therapist two times to develop a home exercise plan and a follow-up visit in six months to assess progress. She said that this home therapy rx can be done annually.
- Diet – she restated that there is no diet approved to help MS, but research shows that eating a heart healthy improves overall health and as a bonus can improve physical stamina and fatigue. It is known that diet can be a stressor to overall health.
She said that if these strategies don’t make a significant difference, then the doctors need to revisit the question of depression.
There are absolutely no drugs approved by the FDA for MS fatigue. Everything pharmacological that is given for fatigue is prescribed for off-label use. Dr. Ward said she would rather give a drug to aid in sleep than give a drug to stay awake. She said many of the anti-depressants (Zoloft, Prozac and Wellbutrin were the examples she gave) can help with fatigue, but unlike other drugs that work immediately, these can take 4-6 weeks to notice a difference (and sometimes up to 3 months).
Her approach is to first look at what co-factors can be removed/changed, including drugs rather than adding more.
Here is a summary of her major points about fatigue:
Fatigue is the #1 complaint of PwMS.
Fatigue is the #1 side effect of most of the drugs that are rx’d for our symptoms.
Fatigue is the #1 side effect of pain – so we should control the pain.
Fatigue is the #1 side effect of spasticity – so perhaps we need to change dosages and times for the spasticity drugs.
Fatigue is the #1 side effect of sleep disorders – get a sleep study performed and make sure the quality and quantity of sleep are sufficient.
Fatigue can be decreased through exercise, diet and good sleep habits.
Fatigue for PwMS is a given but can be managed with a comprehensive approach.