What is MS fatigue?

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What is MS fatigue?

Postby adamt » Wed Mar 31, 2010 2:37 pm

I here this is a common MS symptom, but in what context is 'fatigue' meant?

e,g, after walking few minutes my ,egs get very weak/tired.fatigued.

But ive always thought fatigue in MS means feeling tired as in sleepy.
Like having to take naps in the day.

As i am fully awake the whole day i dont feel i have fatigue, but a lot of people say they have it .
Im confused what type of fatigue they mean when they simply say 'faigue; as a symptom?

thanks
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Postby MSUK » Thu Apr 01, 2010 1:45 am

Hi Adam,

You may like to look at the MSRC's Fatigue Page - http://www.msrc.co.uk/index.cfm/fuseact ... pageid/750 also you can download our newly released Choices Fatigue leaflet from here - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/2853

kind regards

squiffs
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MS-UK - http://www.ms-uk.org/
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Postby adamt » Thu Apr 01, 2010 5:37 am

thanks squiff for the link.

Looks like MS Fatigue is not just feeling tired/sleeping a lot, it also includes my problem of legs tiring/weakening fairly quickly
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Postby sou » Thu Apr 01, 2010 6:43 am

My fatigue consisted of always wanting to take a deeper breath and needing to yawn, combined with an odd feeling of tiredness. I thought that I was not affected by fatigue, but only after resolving my CCSVI I realized that this feeling was abnormal. Now, fatigue feels different than what it used to.

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Postby Vhoenecke » Sun Apr 04, 2010 8:54 pm

This sounds weird but I describe my fatigue as a whoosh that goes over my body. I feel like I am spiralling down, down, down. When I get up after a night's sleep it feels like I haven't been to bed in 2 weeks. I think it is because the iron in our brain does not allow us to get into REM sleep stage. This is the rest stage of sleep. I have found that IBT has helped my fatigue.

Val
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Re: What is MS fatigue?

Postby NHE » Sun Apr 04, 2010 10:51 pm

Vhoenecke wrote:This sounds weird but I describe my fatigue as a whoosh that goes over my body. I feel like I am spiralling down, down, down. When I get up after a night's sleep it feels like I haven't been to bed in 2 weeks. I think it is because the iron in our brain does not allow us to get into REM sleep stage. This is the rest stage of sleep. I have found that IBT has helped my fatigue.


I have discovered that in order to get somewhat decent sleep that I need to have my bedroom as near to silent as possible. I have a battery powered clock which makes an audible clicking sound. The sound is negligible except for when I hang it on the wall (its normal position). When it's hanging, the sound is louder. For several years (5-6) I was able to ignore it. However, this became increasingly difficult. One night when it was particularly annoying, I got up and took the battery out of the thing. Afterwards, I had the best sleep that I had had in months. My dreams were more vivid and I actually felt clearer headed in the morning.

The moral of my story is that sometimes it is the simple things that we easily overlook which prevent us from getting a decent night's sleep. My right foot has chronic neuropathic pain and sometimes it can take an hour or more to fall asleep. Add to that the ticking clock and it was much worse.

In keeping with the theme of this thread, this is what MS fatigue means to me. I have several friends that know I have MS and ask me how I'm doing. If I say that I've been really tired all the time, I typically get a response back that they are tired too. I know that they cannot understand an "MS tired" as they have never experienced it. As such, this is my analogy. When I was better fit I used to ski quite a bit (my favorite runs were the steep double diamond runs that required turning down the fall line, oh, and any resemblance of powder when we would get it). The first day of the season always wore me out. I would ski as many runs as possible to maximize my (run)/(lift ticket dollar) ratio and use muscles that I hadn't used all summer and fall. By the end of the day, I could barely walk and would be unsteady on my feet and everything from my back down to my feet ached. It was a good ache and I soon bounced back and subsequent ski trips were not as tiring. However, with MS, I now feel like I've gone on that first ski trip of the season almost every day.

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Postby Vhoenecke » Sun Apr 04, 2010 11:11 pm

Good explanation. I don't even bother telling non-family laypeople that I am tired anymore. When my children were very young I was wondering why I was so tired and if my sleep was interrupted I was totally done for the next day. That fatigue now makes sense that I have been diagnosed. I look forward to one day soon losing this fatigue. Thanks NHE
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Postby Husker48 » Tue Apr 06, 2010 2:22 pm

Glad I found this post. I have extreme fatigue. I am trying to get on medication for it but my insurance will not provide for provigil or nuvigil. Does anyone else have any other suggestions? Also, I know what you mean about other people not understanding your fatigue. My wife doesn't even understand she just tells me to "buck up" or check into going on disability if its that bad.
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Re: What is MS fatigue?

Postby ndwannabe » Sun Apr 11, 2010 11:55 pm

adamt wrote:
But ive always thought fatigue in MS means feeling tired as in sleepy.
Like having to take naps in the day.



Yes.

Some other examples:

* practically falling asleep while driving
* inability to keep ones eyes open while talking, often without any warning - it does not have to be a "slow-developing fatigue"
* an urgent desire to lie down right there and right now - I have lied down right on the bathroom floor because I could not NOT lie down.

It's basically when your body slows down all the functions to the minimum. And there is no "toughing it out"

If you don't have it - 1) GOOD FOR YOU! It's great not to have it 2) You probably won't understand, no matter how well we describe it :)
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Postby EyeDoc » Mon Apr 12, 2010 4:52 pm

Tiredness is a physical condition i.e. "I am sleepy"

Fatigue is a medical condition.

It is difficult to explain MS fatigue to someone who has never felt it.
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Postby Cece » Wed May 05, 2010 2:39 pm

Someone asked about other drugs than provigil or nuvigil for fatigue...I am currently taking amantadine too and feeling it has some benefit.

The fatigue has been well-described. I'd add that there is that feeling of collapse (mental and physical); that it doesn't get better after a night's sleep, so that over-doing it on Saturday can mean still paying for it the following Thursday despite full sleeps each night in between; that it ends up being more limiting than you'd even think, because there's the fear of getting too far from a place where it's okay to collapse; that it is lousy-awful and you probably know it if you have it. :)
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Postby Bethr » Wed May 05, 2010 3:03 pm

By reducing my iron levels, I have got rid of my fatigue. This is absolutely for real. I had been in almost a coma like sleep every afternoon for over two years, (felt like I'd been given an anesthetic, so I know exactly what everyone is describing) and I had developed a brain lesion early in the piece in 2008. My iron levels were at their highest when the lesion developed (but still relatively close to the acceptable range). They thought I might have MS.

I noticed that after large blood tests I felt great and did not sleep in the afternoons for 4 days, and felt very energetic, went on to give a full blood donation after that and stayed awake for four weeks! I went back to afternoon sleeping again. My Dr. is now coming around and sent me for more blood tests. Each time I lost all my fatigue, and each time I was better overall.

My ferritin slowly went down to half what is was, and I feel great.
I am having heart arrythmias though, but quite tolerable, much better than the fatique.

There is something in this, and I'm sure it links to CCSVI and iron metabolism. I don't know if this would work for others either, though a few in here have had good results.

Recent studies have come out that show that Lymphocytes (Killer T cells), ie: immune system, regulate iron metabolism. See studies by Maria De Sousa published 2010.

I would be interested to know what levels of lymphocytes MS people have (normally low or high)? Does anyone out there have any blood test results they could share. Lymphocytes are on most basic test results.
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Postby Loriyas » Wed May 05, 2010 3:26 pm

I have found B12 to help some with fatigue. You can get it over the counter. It is not expensive. I also get B12 injections which do help also.
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Postby msmything » Fri May 07, 2010 11:09 am

For me the fatigue is better described as lassitude..

It's both physical and mental, it's a feeling that I can't get anything accomplished at all, life is just too BIG to deal with.

I have good nights of sleep pretty much all of the time, yesterday I got things done, today, I am pretty useless..
Be kinder than necessary, for everyone you meet is fighting some kind of battle..
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