Fatigue/Exhaustion and MS question?

[alli_alli]

My boyfriend is in "limbo land" right now,  and hes going to see a new neuro pretty soon.  But we have a question about the correlation between movement and fatigue in MS.  

Basically when his symptoms started a few months ago, he used to complain a lot about extreme fatigue. He was always sooo tired.  But ever since he's been at home on the couch 24-7, he doesn't complain about fatigue/exhaustion anymore!  But something interesting happened today when we went to an event and had to park our car pretty far and had to walk quite a bit. He got really REALLY tired, the same way he used to feel a few months ago.  It made me think of his job that he had when his symptoms started and when he complained about the extreme fatigue.  His job involved tons of walking.  But ever since he's been off from work, he barely walks around and I was thinking maybe that's why he doesn't have that specific symptom anymore?  

So we were wondering if the fatigue as a symptom of MS is only related to walking/movement.  Or if fatigue is constant with people with MS regardless if the person is sitting or moving around? Thanks!

[Lulu54]

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.

[crwriter]

I like her answer muuuuuuuuuuuuuuuch  better.  I am just a baby at this as I just received a confirmed diagnosis this past week.  I have yet to explore all aspects of this disease.  I  woke up earlier with my legs writhing in pain from doing too much yesterday, but Sarah covers all bases.

[Sparkysarah]

Hi and welcome to the forum, and it is very refreshing to have a post from you showing such support for your boyfriend. I think that the way we all experience MS is individual to each of us.

For me my fatigue has definitely been worse under the following cirucmstances;

1.  when in relapse
2.  when I have exercised or done too much
3.  if I have flown by airplane and particularly if jet lagged
4.  if i am under the weather and have either an infection, cold or virus
5.  a few days before my period and during menstruation (not relevant for your bf!)
6.  some days there is no obvious trigger or reason..I am just exhausted and need to rest
     and sleep.

MS is unpredictable but I think that the better we understand our own bodies and manage them, the better able we are to retain control of how we are each day. Personally I find that even when I am just moderately tired I try and keep mobile..but when the overwhelming fatigue hits, then I know I need to rest, lie down and do nothing.

Hope this give a little insight..but this is just my own experience and as I said we are all different and what works for one person may be completely different for someone else. So my advice to your boyfriend is to be his own advocate, listen to his gut instinct and do what feels right for him.

With best wishes and feel free to dip in to the forum again..it can be hard supporting someone with MS.

Sarah

[crwriter]

I find movement to be completely exhausting.  It's tough to keep my legs moving.  We take movement so darn forgranted.  I long for the days when I could simply keep up.  I'm hoping infusion might halt the disease somewhat and who knows?  Lesions come and lesions go and perhaps some wil go.  I find even those with msers in their families walk too fast.

[Sumanadevii]

Here is a link that helps to explain MS fatigue.  It is not a one size fits all thing..

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/fatigue/index.aspx

I think it is wonderful that you are supportive and standing with your bf.  Not all MSers are so lucky.  I wish you well.