Cyclical autoimmune madness...
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12-03-2013, 12:41 AM (This post was last modified: 12-03-2013 12:46 AM by WeAreTheCosmos.)
Sad Cyclical autoimmune madness...
For those who don't know, I have a type of autoimmune disorder, peripheral nerve hyperexcitability, which causes what is commonly referred to as Cramp Fasciculation Syndrome. The more common, and less debilitating version is Benign Fasciculation Syndrome.

I guess it hit me over 3 and a half years ago. At the time I was a big 230lbs bodybuilder. I worked out 364 days a year, and it was a pretty big part of my life. It was upsetting when I got an abnormally lengthy(for me) sinus infection and had to take a week off. There was an unusually intense fatigue following the illness, which just went on and on. But after about two weeks, the sinus infection had resolved... I tried a workout. It destroyed me. I felt like hell the next day, and the sinus infection returned within a few days.

A few weeks later, I tried a very light workout again. I gassed out within a few minutes and couldn't continue.

A month and a half after first getting sick, the twitches started. I remember when I first felt them. I woke up to what I thought was an earthquake. My bed was shaking... Looking around, I noticed that nothing else was. When I realized it was my quadriceps twitching like crazy, it really freaked me out. I massaged them, and they stopped. I should have taken a moment to enjoy that peace, but I went back to sleep. Ever since waking up that next morning, I've been twitching... I haven't gone a single waking minute without a fasciculation SOMEWHERE, ANYWHERE in my body.

I was tormented by them for a month before something worse started turning the twitches into mere annoyances. I started to get painful cramps in any muscles that were being used for more than a second or two. I started to move like a fluid... Just flowing around, making as few unnecessary movements as possible; trying to avoid the cramps.

Fast forward a two years: I'm not working anymore. Its impossible to get through a meal without my face cramping up. I can't climb the stairs to bed, though I sleep all the time. The only thing keeping me going is reading. I read 3 books a week for over 2 years. Good books... TTA would approve.

About a year ago, my symptoms started to get better, and within a few weeks last spring, they almost completely disappeared. I say almost, because the twitches NEVER go away. They don't bug me anymore, but they are the constant reminder that this thing is still with me...

I was able to DO things again. I started running, which I never cared much for... but now it seems sooooo good, just because I can. I started working out again. Not like before, not overdoing it. I work out to be healthy, and I have shifted to a healthier weight. I really want to put an emphasis on how amazing it feels to be able to run, bike, climb... even smile without painful cramps.

Well, that lasted for 9 months...

I got a respiratory tract infection last month. The infection wasn't even a big deal... But the fatigue was familiar. Sure enough, two weeks later, the cramps are back... They aren't very bad yet, but they didn't start badly before. I knew that in severe cases like mine, it will likely be with me forever, and emerge from time to time... It was bad the first time, but I managed to avoid depression by reading. But now that I've been SO happy for this short time, the contrast is too much to handle. Why the fuck do I get a taste of freedom, and then thrown back in the cage? I wont do this again... not for another 3 years. I feel like I'm sinking fast, and things are getting dark and stretched out and away from me, like falling into a pit.
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13-03-2013, 02:37 PM
RE: Cyclical autoimmune madness...
Its advancing very fast this time. Today the facial cramps started. I'm not happy about this. My hands are cramping whenever I have to write something, which at work, is every few minutes... Can't sleep due to the increase in twitches, wake up sore and tired, and then get up for some more pain and cramps. Fuck this...
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13-03-2013, 05:14 PM
RE: Cyclical autoimmune madness...
I'm sorry. That just sounds awful to go through. Hug


Wind's in the east, a mist coming in
Like something is brewing and about to begin
Can't put my finger on what lies in store
but I feel what's to happen has happened before...


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13-03-2013, 08:37 PM
RE: Cyclical autoimmune madness...
(13-03-2013 05:14 PM)Momsurroundedbyboys Wrote:  I'm sorry. That just sounds awful to go through. Hug

It does sound terrible. Seroquel gives me some twitches like that but only just before I fall asleep, and only briefly. Anticonvuslants don't help none?

Breathing - it's more art than science.
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13-03-2013, 09:34 PM
RE: Cyclical autoimmune madness...
Anticonvulsants help... But the twitches aren't really the big problem, and this other medication I tried made me into an unimaginative idiot... Cause its main use is for treating bipolar.
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13-03-2013, 09:48 PM
RE: Cyclical autoimmune madness...
I'm sorry to hear about your condition. I really don't know what it's like but I hope you know that I don't say anything here litely. Good luck taking this thing on and managing it; and keep track of the research that's going on out there. With all the advancements in science medicine that's being made these days you never know.

Just an outsider looking inn.
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13-03-2013, 10:36 PM
RE: Cyclical autoimmune madness...
Hey WeAre,

I tried searching this but not much came up. Could you be more specific?

Btw, it sounds shitful! Sorry to hear.

EDIT: Cancel that request, I found something

Humankind Dodgy (a total misnomer)
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13-03-2013, 11:01 PM
RE: Cyclical autoimmune madness...
(13-03-2013 10:36 PM)aurora Wrote:  Hey WeAre,

I tried searching this but not much came up. Could you be more specific?

Btw, it sounds shitful! Sorry to hear.

EDIT: Cancel that request, I found something
Yeah there is some wiki info on CFS

As far as benign fasciculation syndrome goes, most people will experience it at some point, even mildly... Unfortunately, the reasons for experiencing benign fasciculations aren't always the same, and aren't always benign.

A couple years ago I went for an MRI, it showed demyelination in my brain (erosion of the protective coating of neurons), like MS, or a bunch of "borderline" MS variants... And I'm not sure why the doctors said it didn't look too concerning, but I am going to try to get a follow-up. I should have had it done when I was feeling better, to check for some relation, and verify if it was caused by an autoimmune reaction. If it shows up again now, it will just seem more concerning, and still give no insight as to whether it is related (though it most likely is).
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13-03-2013, 11:06 PM
RE: Cyclical autoimmune madness...
(13-03-2013 11:01 PM)WeAreTheCosmos Wrote:  
(13-03-2013 10:36 PM)aurora Wrote:  Hey WeAre,

I tried searching this but not much came up. Could you be more specific?

Btw, it sounds shitful! Sorry to hear.

EDIT: Cancel that request, I found something
Yeah there is some wiki info on CFS

As far as benign fasciculation syndrome goes, most people will experience it at some point, even mildly... Unfortunately, the reasons for experiencing benign fasciculations aren't always the same, and aren't always benign.

A couple years ago I went for an MRI, it showed demyelination in my brain (erosion of the protective coating of neurons), like MS, or a bunch of "borderline" MS variants... And I'm not sure why the doctors said it didn't look too concerning, but I am going to try to get a follow-up. I should have had it done when I was feeling better, to check for some relation, and verify if it was caused by an autoimmune reaction. If it shows up again now, it will just seem more concerning, and still give no insight as to whether it is related (though it most likely is).
Okay, young man, back to the doctor you go Dodgy

You don't want a stint in the naughty chair Sleepy

Humankind Dodgy (a total misnomer)
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14-03-2013, 02:17 AM
Cyclical autoimmune madness...
(13-03-2013 09:34 PM)WeAreTheCosmos Wrote:  Anticonvulsants help... But the twitches aren't really the big problem, and this other medication I tried made me into an unimaginative idiot... Cause its main use is for treating bipolar.

That sounds eerily familiar. I believe I've tried 2-3 medications which could be described thus. Lithium was like that. Prozac was just frightening though. Zoloft just gave me the runs...and cramps.
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