ME/CFS Researcher Says "This is Going to Turn Very Quickly"

[Lissa]

Anybody else have a wicked tremor that comes and goes depending on PEM status?

What's really odd is that I would say no..... but in the past I've had random bouts of having my hands (& sometimes arms) tremble. It has been so rare though that I just chalked it up to specific muscle fatigue or maybe low blood sugar. Always after I had been doing something "active". Like I held the hose out in front of me to water plants. Apparently that was too stressful one day but not the next. Thus the randomness. For me the trembling is disconcerting, my arms/hands feel weak, and it lasts for about 1/2 hour?

Happened again last night while I was standing at the stove frying up some veggies in a skillet. Suddenly felt PEM/crashy and had to sit down. Hands were shaking. I ate some protein for a snack and then after having dinner - I slowly felt better and the shakiness went away. Felt like low blood sugar maybe, but why?? Same old routine/foods etc. as any other day. Didn't get much protein at lunch yesterday though. But crimeney -- could I be that sensitive?!

 

[San Diego]

@Lissa - I’ve always thought mine was an indicator that I’ve run out of cortisol my body is desperately trying to keep me going with adrenaline.

Once it starts, it will take days to gradually wear off. Benign familial tremor runs in my family, but this is very different. Tremor testing (waste of time and money) didn’t really pin it down. Story of my life!

 

[Hezza]

@Lissa - I’ve always thought mine was an indicator that I’ve run out of cortisol my body is desperately trying to keep me going with adrenaline.

Once it starts, it will take days to gradually wear off. Benign familial tremor runs in my family, but this is very different. Tremor testing (waste of time and money) didn’t really pin it down. Story of my life!

Yes! Seen neurologist for it- right- useless... Mine is usually following use of my muscles. It feels like that old game we used to play with weights when I was a kid called "burn out" (start w the heaviest weight you can bench, doing so until you can't possibly bench it even once more then take a weight off & do it again until you're left w just the bar & your hands & arms are shaking & so weak they can't even bench the bar) except instead of bench pressing weights it could be from holding/gripping my iPad! Or any slight thing. Now there's this new thing w involuntary jerks of my arm or hand especially noticeable when reaching for something, bumbles & fumbles follow...Then at the end of a particularly long or overly stimulating day I get convulsions similar to hard down chills, really hard down. That gets my whole body tight & shaking. Anything sound familiar?

 

[San Diego]

Yes! Seen neurologist for it- right- useless... Mine is usually following use of my muscles. It feels like that old game we used to play with weights when I was a kid called "burn out" (start w the heaviest weight you can bench, doing so until you can't possibly bench it even once more then take a weight off & do it again until you're left w just the bar & your hands & arms are shaking & so weak they can't even bench the bar) except instead of bench pressing weights it could be from holding/gripping my iPad! Or any slight thing. Now there's this new thing w involuntary jerks of my arm or hand especially noticeable when reaching for something, bumbles & fumbles follow...Then at the end of a particularly long or overly stimulating day I get convulsions similar to hard down chills, really hard down. That gets my whole body tight & shaking. Anything sound familiar?

I’d love to read your response, but like many of us on this forum, my brain can no longer read tightly packed text.

You’ll notice that most of us put in paragraph breaks where they don’t even make sense. But it enables all of us to read.

Thanks!

 

[Hezza]

Right! Sorry

Yes! Seen neurologist for it- right- useless...

Mine is usually following use of my muscles.

It feels like that old game we used to play with weights when I was a kid called "burn out"

(start w the heaviest weight you can bench, doing so until you can't possibly bench it even once more then take a weight off & do it again until you're left w just the bar & your hands & arms are shaking & so weak they can't even bench the bar)

Except instead of bench pressing weights it could be from holding/gripping my iPad! Or any slight thing.

Then at the end of a particularly long or overly stimulating day I get convulsions similar to hard down chills, really hard down. That gets my whole body tight & shaking.

Now there's this new thing w random ( @Lissa )involuntary jerks of my thumbs, hands or arms, especially noticeable when trying to text, gripping or reaching for something. Bumbles & fumbles follow...

Anything sound familiar?

 

[Hezza]

I’d love to read your response, but like many of us on this forum, my brain can no longer read tightly packed text.

You’ll notice that most of us put in paragraph breaks where they don’t even make sense. But it enables all of us to read


Always forget something

 

[San Diego]

Right! Sorry

Yes! Seen neurologist for it- right- useless...

Mine is usually following use of my muscles.

It feels like that old game we used to play with weights when I was a kid called "burn out"

(start w the heaviest weight you can bench, doing so until you can't possibly bench it even once more then take a weight off & do it again until you're left w just the bar & your hands & arms are shaking & so weak they can't even bench the bar)

Except instead of bench pressing weights it could be from holding/gripping my iPad! Or any slight thing.

Then at the end of a particularly long or overly stimulating day I get convulsions similar to hard down chills, really hard down. That gets my whole body tight & shaking.

Now there's this new thing w random ( @Lissa )involuntary jerks of my thumbs, hands or arms, especially noticeable when trying to text, gripping or reaching for something. Bumbles & fumbles follow...

Anything sound familiar?

Awesome spacing! Thanks so much.

 

[Lissa]

Y

Right! Sorry

Yes! Seen neurologist for it- right- useless...

Mine is usually following use of my muscles.

It feels like that old game we used to play with weights when I was a kid called "burn out"

(start w the heaviest weight you can bench, doing so until you can't possibly bench it even once more then take a weight off & do it again until you're left w just the bar & your hands & arms are shaking & so weak they can't even bench the bar)

Except instead of bench pressing weights it could be from holding/gripping my iPad! Or any slight thing.

Then at the end of a particularly long or overly stimulating day I get convulsions similar to hard down chills, really hard down. That gets my whole body tight & shaking.

Now there's this new thing w random ( @Lissa )involuntary jerks of my thumbs, hands or arms, especially noticeable when trying to text, gripping or reaching for something. Bumbles & fumbles follow...

Anything sound familiar?

Yes- great description of "burnout". That's totally the feeling after what seems like slight effort. Only happens rarely for me though. Not sure why one time but none of the rest, after doing nothing out of the ordinary.

Can't relate to the chill-like convulsions though. Hmmm....

The involuntary shake or jerk when reaching- yes. But same as above. Rare, and really weird when it happens. Like reaching for my water glass - ????

Only happens though when I'm already having the hand trembles and weak arms.

 

[Danielle Stiles]

Laurel Crosby recently said she thinks "Things are going to turn very quickly in this disease". You've probably never heard of Laurel Crosby, and she's never published on this disease - so why should you listen to her? Because Laurel Crosby is deeply, deeply embedded in Ron Davis's work. In fact, she may be his closest collaborator.

[fright]

[/fright]I happened to meet Laurel Crosby at the San Francisco IACFS/ME meeting two years ago. She was spitting out theories and ideas so quickly my eyes were crossing. What an intellect I thought! (What a humbling experience as well )

I thought, my god, this woman HAS to have a central role in all this - and it turns out she does. She's been working with Ron Davis for four years producing intricate models that attempt to explain what's happening in ME/CFS. Those models took on a new significance when metabolomics testing opened things up tremendously. (More about that later).

Janet Dafoe, Ron's partner, said Laurel can dig up things that nobody else. She's a tenacious, dedicated researcher.

So when she says at the MEAction rally at San Francisco that she thinks "Things are going to turn very quickly" in this disease - she's definitely someone to listen to.

Stay tuned for a talk with Laurel Crosby...

 

[Danielle Stiles]

God Bless you Dr. Laurel Crosby. From all the people with CFS and fibromyalgia and Pots.
I started at the age of 33 and now I am 70. Life is challenging enough without all the side effects that we all go threw CFS/fibro etc. We would all like to be with a strong thinking mind and body. My prayers go out to all,blessings.

 

[Kristine Anderson]

Anybody else have a wicked tremor that comes and goes depending on PEM status?

I do and never have known why. Neither does my doc. I also have severe RLS (and arms) and take a lot of meds and magnesium for that. Tremors come and go. What is PEM status please?

 

[San Diego]

I do and never have known why. Neither does my doc. I also have severe RLS (and arms) and take a lot of meds and magnesium for that. Tremors come and go. What is PEM status please?

PEM = Post exustional malaise. It’s the “crash” we get after too much activity.

The worse my PEM, the worse my tremor - That and other symptoms make me believe my crashes include brain inflammation.

 

[Seven]

Anybody else have a wicked tremor that comes and goes depending on PEM status?

I loose conciousness when I crash really bad and tremble (I think comes from head). It hasn't happened in a while, I had high titters of hh6v so not sure if it was that or comes from autonomic. I was checked and was negative for seizure. I always wonder why is not more talked about. I saw a good video on it in the preview of the documentary of canary in coalmine. I have never being able to record so I can show my doctor. Because ussually my family is too busy trying to tend to me (as to stop and record it) and I am not aware of when it happens. This was very bad when I was at my worst, now that I am so much better, I don't think it happens.

 

[San Diego]

I loose conciousness when I crash really bad and tremble (I think comes from head). It hasn't happened in a while, I had high titters of hh6v so not sure if it was that or comes from autonomic. I was checked and was negative for seizure. I always wonder why is not more talked about. I saw a good video on it in the preview of the documentary of canary in coalmine. I have never being able to record so I can show my doctor. Because ussually my family is too busy trying to tend to me (as to stop and record it) and I am not aware of when it happens. This was very bad when I was at my worst, now that I am so much better, I don't think it happens.

It sure feels like more than autonomic, doesn’t it? It’s got to be the encephalopathy portion of this beast. I never lost consciousness from a crash, per se, but passed out all over town from dysautonomia stuff. Two totally different things in my case. The crashes are much worse.

Do you remember where you saw the preview of Canary? I suspect it will be quite an amazing work when it’s done.

 

[Nina]

Y

Anybody else have a wicked tremor that comes and goes depending on PEM status?

Yes. At times I muse over over all things apparently neurological.

 

[Cort]

I loose conciousness when I crash really bad and tremble (I think comes from head). It hasn't happened in a while, I had high titters of hh6v so not sure if it was that or comes from autonomic. I was checked and was negative for seizure. I always wonder why is not more talked about. I saw a good video on it in the preview of the documentary of canary in coalmine. I have never being able to record so I can show my doctor. Because ussually my family is too busy trying to tend to me (as to stop and record it) and I am not aware of when it happens. This was very bad when I was at my worst, now that I am so much better, I don't think it happens.

Andrea Whittemore had seizures as well. Dan Moricoli who now appears to be mostly well has myoclonic jerks which would cause his arms to flail around. He even hit himself in the face a couple of times!

Glad you've gotten better.

 

[Seven]

It sure feels like more than autonomic, doesn’t it? It’s got to be the encephalopathy portion of this beast. I never lost consciousness from a crash, per se, but passed out all over town from dysautonomia stuff. Two totally different things in my case. The crashes are much worse.

Do you remember where you saw the preview of Canary? I suspect it will be quite an amazing work when it’s done.

seconds 0:05

 

[Aidan Walsh]

Has the diagnosis of Ulcerative Colitis been coming up in CFS EDS Fibro patients?