Fatigue

Information about how to manage or reduce the severity of BFS symptoms

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Fatigue

Postby muppetdog on May 26th, 2013, 3:02 pm

I have been reading through this board for over a year now. I started twitching in Oct 2011 - along with experiencing pretty much every other symptom that people talk about on this board. Twitching is not my main concern, though, or something that I even care about. ONE of the big symptoms for me seems to be fatigue. It has pretty much disrupted my life since this has started I have had to take time off of work and have been concentrating trying to get to the bottom of it all.

I have heard “generalized fatigue” mentioned on the board quite a bit, but I am unsure what that really means for all of you individually. So I guess I am asking is:
What type of fatigue do you guys experience, when does it occur, and has it gone away for some of you?

It seems, ever since all this has started my body has just been worn out and I have to push to do anything. I use to be able to run (6 mile was nothing for me and I have run 3 marathons in the past) and to exercise a lot more. Now a days, have a hard time doing too much of anything. I spend a lot of time watching TV on the couch because I feel like crap. I do have good days but most of the time there is some element of fatigue or having to push through everyday life. I feel like the fatigue waxes and wanes a lot but have not found my personal triggers or cure yet.

Another question:
Do you guys live pretty normal lives with your symptoms? Are you able to work full-time and live life the way you did before all this, or has this effected you enough to where you are less of the person you were before? I usually give me self a daily rating on how a feel compared to what I was like before. I usually fall somewhere in the 60-70% range most of the time.
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Re: Fatigue

Postby chrissi on May 27th, 2013, 2:25 am

There are various types of fatigue that come with BFS. One is that one you describe, that we know from the descriptions of chronic fatigue sufferers but also can come along with depression. The other kind is, that muscles per se feel easily fatigued during workout or just normal daily tasks, like holding your mobile phone to your ear or walking up some stairs. About exercising especially running I found out, that I need some time to get into "my rhythm" before the exercising feels OK, and afterwards I feel shaky a lot. Please PUSH yourself to stay physically active, if you have been a runner before, do it. Physical exercise is a mayor key to getting better here. If you now retire to the couch, it will all get worse and start a bad cycle. Just do what you can. It is obvious that running a marathon is not one thing I would plan in my bad BFS phase (although, if I remember right, Bobajojo (who has really IMMENSE twitching, this guy is twitching nonstop everywhere like mad for 2 years now!!) did a half marathon with BFS. He stayed active in spite of his very strong BFS and is doing good).
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Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Fatigue

Postby mwagner on May 27th, 2013, 10:35 am

Has anyone talked about Chronic Fatigue Syndrome with you? Or have you been evaluated for it? Just curious. Many people on this board have doctors who believe CFS and Fibromyalgia are related conditions to ours.

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Re: Fatigue

Postby muppetdog on May 27th, 2013, 2:08 pm

Has anyone talked about Chronic Fatigue Syndrome with you? Or have you been evaluated for it? Just curious. Many people on this board have doctors who believe CFS and Fibromyalgia are related conditions to ours.

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Yeah I have done my homework on both of those, read a couple books on both, and have done other research; both have also been mentioned by doctors, in the past. from my understanding, they are not really something you get evaluated for, they are more of a diagnosis by exclusion due the the fact that many many many other afflictions can present with the same symptoms. They seem like a way for the doctor to say "I really don't know what you have and I am not sure I want to pursue any other possibilities at this time because I am stumped. Here's some Lyrica" - No thanks.

Besides, it comes down to it i don't really fit the Technical diagnostic criteria for for ether. I don't have any of the tender points, I do get sore and weak muscles from time to time and the fatigue I mentioned in my original post, but nothing like what people with REAL Fibromyalgia Syndrome experience. One of my neurologist said that everyone gets fibromyalgia, it just means "sore muscle" but there is a strict diagnostic criteria for Fibromyalgia Syndrome:

http://www.hindawi.com/journals/prt/2012/426130/

As for Chronic Fatigue Syndrome I, although I do have exercise intolerance its seems to a point (AKA - post exertional malaise, AKA - if you push to hard you will feel like crap a day or two later), fatigue and some soreness from time to time, I don't fit the criteria for that ether: no swollen lymph nodes, no strange immune irregularities.

USA (CDC) Criteria - http://www.cdc.gov/cfs/pdf/cfs-toolkit.pdf
Canadian Criteria - http://www.cfids-cab.org/MESA/me_overview.pdf
International Criteria - http://www.co-cure.org/MEICC.pdf Notice this is written by all the "heavy hitter" doctors for Chronic Fatigue Syndrome. Some of which I have seen mentioned on this site.

By the way, I'm not a doctor, nor a self proclaimed expert, but if anyone is trying to diagnose you with CFS (Chronic Fatigue Syndrome, not Cramp Fasciculation Syndrome) I would probably read through the above links. There are also a bunch of good books and sites (non-pseudo scientific sites) out there :D

Oh, and out off all the fibromyalgia stuff I have read, this one seems to be pretty interesting. It is by an MD that has had it all her life and believes, like many, that it is some overactive Fight or Flight mechanism that cannot be turned off:

http://www.amazon.com/Figuring-out-Fibromyalgia-Treatments-ebook/dp/B004LROWRU/ref=sr_1_7?ie=UTF8&qid=1369680926&sr=8-7&keywords=fibromyalgia

So Mitra - thanks for the suggestion, I do appreciate, and am looking for good ideas.

Chrissi - You really should try a half-marathon, they are a blast.
I do get what I like to call "earl muscle fatigue" sometimes. It is like you described: your holding your cellphone, or leaning on your arm, or walk up a flight of stairs and you think "why are my muscles getting sore like I just picked up a 50lb bag of kitty litter or something." And, as you probably know, or at least with me, it comes and goes.

Ok, so back to my original post. Anyone else like this, or went through it out there.
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Re: Fatigue

Postby chrissi on May 27th, 2013, 2:54 pm

If you read my old posts you will see that the Fibro specialist that treated me was supporting that view of a fight andd flight mode that cannot be turned off. He is a leading specialist here and is treating all those related conditions ( CFS, Fibro, IBS, Vertigo, Tinnitus, Lelvic pain syndrome etc.) very successfully.
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Re: Fatigue

Postby muppetdog on May 30th, 2013, 11:48 am

So I presume that due to the lack of specific examples, fatigue is not really that big of a problem for most of you.
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Re: Fatigue

Postby chrissi on May 30th, 2013, 3:41 pm

Muscle fatigue is a common complaint here. General fatigue like " tiredness" happens to some people, but I would say it s not that often mentioned. Maybe because many people with BFS feel very nervous all the time
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Fatigue

Postby Floydian on May 31st, 2013, 8:05 am

I had some severe (muscle) fatigue in both my arms/hands when it all started for me. Besides a bucket full of other symptoms fatigue was a big issue for me at that time and it certainly affected my life. I experienced fatigue with everyday things such as holding a phone, drying myself with a towel, playing music, stirring food etc... One day my doctor advised me to go out for a run which was a bad idea, I didn't get very far, at 0.5 mile my body refused to go any further (while I've always been sporting and had a very reasonable physical condition). I felt like a complete wreck and was nothing compared to the person I used to be, my rating at that time was 35% max. I'm doing much better now, still having flare ups of symptoms (fatigue included). And after exercising it takes a few days to recover. But If I had to rate myself these days I guess I'm in the 75/85 % range which is very acceptable for me.
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Re: Fatigue

Postby muppetdog on June 1st, 2013, 12:07 pm

Floydian -

A lot of what you described I went through and go through. It's funny how you said "I felt like a complete wreck and was nothing compared to the person I used to be." I had my meltdown Feb 2012, about 4 months after I started twitching, and ever since then that same thought has rolled through my head. It was like a circuit breaker was tripped and by body reset it's self to zero on the physical capability scale. I could go out and exercise but I would pay for it later. One of my doctors called it the "Pay to Play" aspect of whatever I have.

I too was really athletic (sporting) and running was a big part of my life. I am now slowly trying to get back there but still cannot push it that hard or I pay later. It usually 1-4 "couch" days if you push it too hard, for me.

The muscle fatigue you describe also has been happening to me ever since. You said something about drying yourself with a towel and playing music. I keep wondering why, when I'm styling my hair and have my hands over my head for more then 10 sec, my muscles just feel shot and sore. I could not play my guitar for the longest time, maybe a couple months, because my hands were sore, and weak feeling. I had a time period where the fingers on my left hand seriously felt like someone hit them with a hammer or I had just taken them out of a snowbank and let them start to thaw. For any of you reading this, if you would like to experience that, just stick your hand in ice-water for 15 min then run it under warm water. It hurts like sum-b*%ch. Most you you reading this are, at this point, are thinking,"this guy's loon." I know, I know.

The Hammer/Frostbite hand thing has gone away - and I hope it never comes back. I am also able to play my guitar now, although my hands to get unexplainable tired and sore sometimes while doing so. Its way worse when I don't get enough sleep. My Early Muscle Fatiguablity, can pretty well be predicted on the restfulness feel of sleep the previous night.

I am trying to get back up to 85% or more and I know without a shadow of a doubt I will get there, but its a frustrating unpredictable thing. Are you able to run now Floydian? Also, specifically, what kind of exercise can you handle at this point?

And to all: what type of physical activity can you handle?

Thanks for the post guys, keep them coming. I have been trying to write and ask about specific stuff I always wondered about but could never find searching the board. I hope someday someone else will search this and learn from it.

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Re: Fatigue

Postby chrissi on June 1st, 2013, 2:29 pm

If you read my old posts you will see that I was literally stuck to the couch, cound not hold fork and knife, not blowdry my hair, hardly walkup some stairs, had to stop working because my hands were so sore I could not do work that needed fine motor skills. That was 2 years ago. Today I am at more than 100 %, I can run 10k, I can go weightliftng to my limits without being sore the next day, better than before BFS.
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Re: Fatigue

Postby Floydian on June 3rd, 2013, 3:49 am

Hi MD, seems we have a lot in common. I had a time that only the thought of doing things with my arms made me sick and tired. Do you recognize that?
muppetdog wrote:I am trying to get back up to 85% or more and I know without a shadow of a doubt I will get there, but its a frustrating unpredictable thing. Are you able to run now Floydian? Also, specifically, what kind of exercise can you handle at this point?

At this point I play indoor soccer, do some running and cycling but on a 'low-level' base as I call it. Before all of this I really pushed myself with sports but it's what you said 'Pay to Play'. And as my changes to compete on the Olympics are beyond zero I will take it easy :wink:
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Re: Fatigue

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