Is fatigue debilitating or can it be more mild?

[jorbsid]

I have days where I would prefer to stay in bed and rest but I have to get up and go to work - so I do.  I also have days where I come home from work and don't move off the couch until bed.  I have not yet experienced fatigue that won't allow me to function.  

Are there levels of fatigue?

[supermum_ms]

Are there levels of fatigue, absolutely YES!

From Lulu's list i experience no's 3 and 5, no 3 is every day and my normal. I have to physically rest before i can eat, so finishing off dinner that i've been preping incrementally all day still requires me to rest. Even something like having a visitor tires out the muscles in my mouth, they need rest too or I can't talk by the end of the day and eating just doesn't happen.lol I need a 2-3 hour nap every day and i'm still having to sit between borring daily activities.

Physically i am forever reminded of being a human string puppet, the more i expect from my body the less it functions, the stronger the tremor, the more off balance and bouncy i am. The trick is doing 'enough' to resemble normal, its a slippery slope and always changing.

No 5 is my house burning around my ears type, everything shuts down, mind, body and sole lol i even drool which is soooooo not a good look. I liken it to every unessesary function has temperarily shut down (days), my brain is sustaining life, everything else is classed by my brain as unessesary. I dont feel, think, swollow, move etc i'm a blob lol 'Elvis has left the building'.

No 5 is when i'm in a relapse, thankfully when the fatigue starts to lift i know i'm back on the upward climb and theres work to do!

Cheers.........JJ

[Jg216]

I read recently in one of my MS books that the extreme fatigue we feel is not like the non MS people.  It is best described as a MULTI SYSTEM failure.  We have physical, emotional, and mental fatigue all at once.  We need to simply lay down no reading, no noise, no tv, no talk...eyes shut!  That's how I describe it...and when I overdue it like being on vacation and doing to much or running around with my teens and activities, driving here and there....it is sometimes this feeling of "total depletion of vitamins" almost flu like.....weak in my extremities.....it is more so when I return from vacation and have had pushed late evenings!!!  Anyone else feel the same way?

[Sumanadevii]

Simply put, I have experienced two types of fatigue.  One is the fatigue that exhausts me.  Examples are just cutting a tomato up for dinner or mixing a boxed brownie.  The other fatigue is the extreme.  I fall asleep right there and now in the middle of a conversation.  I might wake enough to say, I need to be off to bed.

Both are fatigue and no the second is not sleep apnea as I have been tested and nope..I ain't got it.

[Sidesteps]

I've had had a few different experiences with fatigue in my life.

First, I have a hereditary blood disease called Spherocytosis. This blood disease would cause anemia which would cause muscle fatigue as well as just being tired all the time. I just didn't have the energy to do extra things.  I think what surprised many was that it also would make me physically sick --- if I over exerted myself over a weekend, I would become so fatigued I slept all day long until I restored my energy levels.

Another time was during each of my pregnancies. I was so tired I could have gone right back to bed after sleeping 10 hours and/or napping.

The fatigue during my flare last fall was undeniable. Not only did I have the fatigue that was similar to my pregnancy where I could have slept all the time... I was also so tired I was napping as soon as I came home from work. I felt sick. The physical fatigue was more like weakness - I had a hard time walking stairs, walking distances and holding a blow dryer. I also felt extremely fatigued after showers and had to lay down to gain my energy.

Right now, I had have the fatigue that was similiar to my anemia or like when I was early in my pregnancies. I just feel like I haven't slept well and am run down. I could go right back to bed despite sleeping 9 hours. This is not constant for me. I do have better days where this isn't as noticeable yet my level of fatigue is not the same as it was over a year ago. This is quite noticeable. I also have physical fatigue where I seem like I've exerted myself more at lower levels - walking stairs, working out or holding a blow dyer - but it's not as bad as my flares.

So, if I were to put it on graph paper, it probably would look like a mountain range where I have peaks and valleys yet I'm not any where near where I was.  One thing - I fall asleep at family events now, I will lay on the couch with 20 people in the room and sleep. :(

[essdipity]

The health page and Lu's post are both excellent info on fatigue in MS.

Here's my own experience: I always have a certain amount of fatigue that is more than non-MSers have, and is way more than I had back in the day, before MS.

Sometimes I just crash. This is a lot worse than the above, and has caused me to drop out of activities where I am depended upon to show up on a regular basis, much to my sorrow.

I've never had the kind that would cause me to debate whether to get out of the way of a fire :-)

I sleep a lot more than I used to, but this varies a lot too.

So yes, based on my experience, you can have several kinds of MS fatigue, not at once, of course. Another grin.

ess

[Lulu54]

we also have a great health page on fatigue written by Quix -

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Fatigue-in-People-with-MS/show/63?cid=36

[Lulu54]

There was a great seminar on fatigue in the spring and here is what I wrote back then.....

http://www.medhelp.org/user_journals/show/278310/Fatigue---Exercise-and-Therapy-Tips?personal_page_id=865800


This 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.


best, Lulu