Topic: One minute I can't walk, the next I can. I min. I can't think, the next I can ??????
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
How is it that my symptoms can be so bad that I feel like death and then I perk up an hour later and don't feel perfect, but much better and nowhere near death.
My legs get like noodles sometimes and I feel like I'm gonna fall down. An hour later I could run a marathon.
My brain get so bad I can't think straight, and hour later I can thing much better, not clear as day, but not as bad.
I wake up every morning shaking, and it goes away about an hour after waking, still feel it during the day, but not as bad.
One minute I'm sedated as can be, than I'm totally awake the next hour, then back and forth, back and forth with everything above and more.
Am I alone with this ? If not, how do you explain it ?
Lymetwister
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
If it's any consolation, no you're not alone.
Explain it? Sorry, I can't.
I went through that at work a few times last week.
I felt crappy for a while, like I might have to go home, but I stuck it out.
Then an hour later, I felt great, like whatever it was worked its way out of my system.
Then an hour later I had a full-blown panic attack.
Although I didn't have another panic attack, I was up and down like that all last week.
Still feeling that way today--I started Rifampin yesterday, and I went from feeling like I was either herxing or having a reaction to feeling just fine.
It's like, make up your mind already!
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
Yeah...and this really helps people who don't understand believe us, right? lol
-------------------- Never doubt in darkness what the daylight proves to you. Posts: 418 | From Utah | Registered: Apr 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I feel the same as you. Last week I posted that I felt wonderful after starting abx. I spoke way too soon.
A few days later, I was (and still am) all over the map with my symptoms.
I thought today, gosh, it would be great to add another dog to our family. I feel so strong and happy, I know I can do it.
Two hours later, I looked at my pets and wondered how I would even get their dinners.
Or, I think, "well, good, my blurry eyes and body trembles have settled down" only to find that they resume full force.
Two nights ago I forgot how to use my cell phone. The next day I didn't have a problem.
This is a crazy, crazy path we are on.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
quote:Originally posted by Starfall1969:
I went through that at work a few times last week.
I give you a lot of credit being able to work with Lyme. I imagine it can make for some painfully long days.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I echo Starfall's estimation:
"If it's any consolation, no you're not alone.
Explain it? Sorry, I can't."
-
But I have read of one excellent explanation - but I don't know who wrote that. It was by a lyme researcher who said (as I experience) the nerves can be nearly paralyzed on minute and then maybe a while later the person can get up, do some things and then when the exhaustion hits again, it is a sort of temporary paralysis.
However, I caution you highly not to try to explain it that way to a doctor. I did that once and he screamed at me "You have NO trouble walking . . . did you see that poor woman in the waiting room in a wheel chair? Now, SHE has trouble walking - not you."
- Since this is so common with lyme patients, though, your LLMD should be able to better explain it. Adrenals are only part of it. The various nervous system dysfunction is also connected.
Also, remember that the brain is overwhelmed and flooded with chemicals from infection and treatment - and that infection short circuits brain function. All circuits simply are not working all the time. It happens. Lots. But it will get better.
And - advice - don't push it. When you have that level of exhaustion, the body is telling you it needs rest. When you get back up again, be frugal with your energy use. I have to work out in my mind while lying down, all the steps so that I can plan the most efficient way to do things - even making breakfast.
If I go through each step in advance in my mind, my body is more on board.
And, oh, this does get BETTER for many. Really. And, as for others who don't believe us, it's best to let them think what they want. We simply don't have the luxury of caring what others think anymore and it can be freeing to let that go. To thine own self, be true.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
This is just the way lyme is.... it's like a roller coaster ride.... you have ups and downs. You can feel good one minute and feel like death the next. I get that all the time... it's confusing and aggrivating and saddening all at the same time.
I have hours where I'm okay and then bad the next hour. I have days where I'm good and bad the next day, etc... always a guessing game with this disease.... and I'm so tired of it.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I just remembered that the passage I read about this said it had to do with slow brain waves. Delta and Theta just get so strong that they seem to nearly paralyze the body.
So, how is your sleep? Are you getting good sleep at night?
If the brain is taken over by Delta and Theta you really just need to give in and let it rest as it really needs that.
Why we can move in an hour, then, says that it rested up a bit. Of course, it will get tired again later.
Brain and body exercises that can help increase Alpha brain waves and Beta, too, are Qi Gong and Tai Chi. (One of those, either Alpha or Beta is sometimes too excited and the other one more for being alert but also calm - that's what we are going for).
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I own an Alpha stim machine, perhaps that would help.
??????????????????
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i had the temporary paralysis when working as a PE teacher. it took a lot of creativity to hide it. if it happened at one end of the gym-i would have to pretend that is where i wanted to be-and change the lesson.
when i had kindergarteners i often taught sitting on a stool-occasionally i would fall off and have to make it like it was a joke or something.
i worked 19 1/2 yrs with lyme. but i only knew i had it for 10.
i can't believe i did that. but i'm glad i did. the kids got thru college and are independent now-
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
YES! I am always like this! It's up and down all the time! Really does make you feel crazy sometimes. Each day brings something new. My day usually starts out okay.. a little pain in my feet, but by mid afternoon I feel worthless (brain fog, weakness, and pain) This persists throughtout most of the day. But strangely enough by the time evening rolls around I start to come out of it (sometimes). I'm usually very fatigued, but the fog kinda lifts. Does anyone else do this?
posted
It is a weird disease. Some things come and go and some things are always there. What is scary is when something that came and went becomes permanent.
I can't tell if I'm making any progress.
Posts: 743 | From New York | Registered: Apr 2009
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