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Im filling out a form for CCSVI Testing/treatment

anf the questions is 'Intensive fatigue - YES/NO'

Ive always thought fatigue is when you get sleepy/tired often, easily

my symptoms are mobility - legs strength, balance -weight loss and bladder

So yes by legs do fatigue quickly, but i am wide awake all day, i never get tired easily, unless ive had luittle sleep


So do you think when they say 'Intensive fatigue' they are talking about sleeping a lot/getting tired in the day?
is thats what is meant by fatigue?

Maybe think of it in terms of intense lack of energy and stamina, rather than just sleepiness by itself. Do you ever experience episodes where you are suddenly lacking in energy or stamina for no apparent reason?

This doesn't happen to everybody with MS but it can make life sheer hell if it does, and because of its unpredictable nature can arouse suspicion in other people that you are simply being lazy, or making up the fatigue to avoid doing something - especially before doctors give you an official diagnosis.

Gainsbourg
even with an official diagnosis, people often think you are exaggerating--
intensive fatigue is so pervasive, you can just about feel that your bones have stopped their turnover--something in your core just stops working, leaving you drained of all energy. Even thinking slows down incredibly.
It is very hard to describe to anyone who has not experienced it--the rare professional has a grasp of it.

So do you think when they say 'Intensive fatigue' they are talking about sleeping a lot/getting tired in the day?
is thats what is meant by fatigue?

You would know if you had it. It probably means what I have - needing a nap most days, forgetting words if I don't, feeling like you are just about dragging yourself through from day to day, legs and arms feel like they have weights attached to them, painful body, and you are just stupid with exhaustion. You know there are things to do but you just want to lie on the ground and sleep.

I occasionally get a few days when I don't have it, and my god, then I can do so much!

If you've ever had real influenza it feels like the exhaustion you get when recoevering from that. It feels nearly flu-ey.

I like to think of it as "Extreme Body Fatigue". When it hits, it hits. For me it can come on in an hours time. When it comes on, you know it. I dont get sleepy with it. But when I have an episode ie... If I need to get up off the couch to use the bathroom or get a drink, I dread it, just an absolute loss of energy.

Just as wonderfulworld describes if you do not have it some days it feels like heaven! Just like after influenza when you're better again you think life is another thing.

If have it I'm in a cloudy/tired brain and just my body totally exhausted - you just can fall in your bed and not do anything...every physical effort, just simple things as cooking or picking up something takes you triple of time and I then have to really force myself hard to get my last duties done and fall in my bed. And if I overdo it one day in doing a lots of things and it hits me, I often say to myself: this is unfair to get punished for being active and diligent! So unfair to be condamned to slowing down and then worse if maybe interpreted as laziness by people that cannot understand...

The answer for you in the questionnaire is certainly NO

Hi,

I describe MS Fatigue as if someone unexpectedly snuck up behind me and injecte3d me with horse tranquilizer.

It comes on very quickly. My mouth goes all slurry and even trying to think let alone talk is impossible. I drop every thing I touch, I can't stand up at all as my legs go to mush and I just HAVE to lie down NOW!!!!

Usually I crash into the deepest sleep imaginable for a coupe of hours and then I am OK again.

I get this everyday usually about 3.00pm. Great time as I have to do the school run, ballet etc.

If I get a nanna nap in at lunch time I may ward it off but it can hit me at any time, especially if it is warm or I have overdone it.

From what you describe I would say "NO" is the answer on the form Thankfully for you!

Cheers,

Belinda

There is "sleepy" which can be a pleasant or not-painful feeling.

Then there is "fatigue" which is heavy and crushing and painful. Pushing through just makes it crush harder. And it is daily and unavoidable...getting enough sleep doesn't prevent it in the least, nor does exercising or eating well or anything that might work for a healthy person. It is not constant, but it might grow over a period of time or it might slam-hit unexpectedly. It can also stay all day or -- very surprising -- I can feel like I'm at death's door, lie down for ten minutes, and be fully recovered. Sometimes. The unpredictability is part of it.