PEM vs Crashing in Chronic Fatigue Syndrome (ME/CFS) and/or Fibromyalgia

[San Diego]

I had a very rough “crash” recently, and realized it’s quite different than a PEM episode. Am I using the words “crash” and “PEM” the same as everyone else?

[fright]

[/fright]CRASH: If I’m forced to be upright in a busy environment for more than a few minutes, the crash comes on VERY quickly. I feel pain and buzzing in my brain as I get overwhelmed and lose the ability to process conversation and other stimuli. I get confused and frantic to get out of the troublesome environment.

If I don’t get to a dark place and lie down immediately, I crash hard. Vomiting, vertigo, severe diarrhea, confusion, head pain, intolerance to light and sound, chills, shaking, and an overwhelming feeling of “DON’T MOVE ME!!!” I’ve lost consciousness on several occasions.

I’ve learned the only way to handle a crash is to get out of the room, or get home, ASAP (the trip home is pure hell), take 2 Valium and a Zofran, crawl in bed with heating pads and a barf bucket in a completely dark quiet room, and sleep it off for the rest of the day. Many times I end up laying on my bathroom floor until the "double bucket blues" pass.

Of course, I’m then left PEM’d for days after.

PEM: This comes on more gradually, with a sense that I’m overdoing it and will pay. It doesn’t take hold completely for at least a day, and isn’t generally as severe as a crash.

Anybody else? What are the different mechanisms at play here? Is the “crash” a dysautonomia thing and the PEM more an ME/CFS thing?

My neurologist thinks the crash episodes sound like low intracranial pressure secondary to connective tissue disorder. Whatever they are, they are hell - scary and completely debilitating. They are very similar to my first year bed bound with ME/CFS when I literally thought I was dying and didn’t know how I could go on.

 

[Who Me?]

For me PEM is delayed after usually after doing something for over an hour. I did a a lot of talking to a contractor yesterday and had to lug groceries in. My bad PEM day is 2 days after the major exertion so I know tomorrow I am going to pay for a few days.

This morning I felt too good (being lulled into a false sense of security) so did too much, cleaning, cooking. Immediately after stopping I'm going to crash. This will just make my PEM worse.

If I do to much around here, taking care of stuff I will crash within a few hours but that does not lay me up for days.

I don't get too much into the what was I doing, what is the mechanism because PEM=CRASH=SUCK

 

[Remy]

Is the “crash” a dysautonomia thing and the PEM more an ME/CFS thing?

I think the way you're describing it, yes. My completely non-profession opinion is that the crash parts sounds like brain excitotoxicity. The fact that it's relieved by Valium (a GABA agonist) makes me think you've got some excitatory neurotransmitter (glutamate?) on overdrive after being exposed to noxious stimuli (WalMart) that isn't getting shut down quickly enough.

PEM may be more of a dysfunctional metabolic state, where your cells literally don't have what they need to carry on making ATP.

For me, I think of a crash as a part of PEM. The PEM is the climate and the crash is the weather. But I'm not at all sure that's how other people use those terms and as I said, I don't get a lot of PEM anyway. (Knock wood).

Whatever it is...I feel your pain and understand the fear. I would post the hugging emoji if I could find it.

 

[IrisRV]

I had a very rough “crash” recently, and realized it’s quite different than a PEM episode. Am I using the words “crash” and “PEM” the same as everyone else?

I used to use the word crash for PEM episodes, but I now realize they two are not really the same.

Nowadays I don't use the word crash much because I don't have the sudden-onset collapses anymore. However, if I needed to make the distinction in the future, I'd call the sudden onset "I have to lie down right now" episode a crash. For me, PEM doesn't hit for 2-4 days and is much more complete exhaustion and flu-like.

Is the “crash” a dysautonomia thing and the PEM more an ME/CFS thing?

For me, this appears to be the case. OI medications and minor OI management techniques have pretty much put an end to my crash-type episodes, so I'm assuming they're dysautonomia for the moment.

PEM has been more intractable, so I think of it more as an ME/CFS thing. Exquisitely careful pacing and infection avoidance has kept PEM episodes to a minimum, but we all know neither of those things can be perfectly achieved.

That said, if I had another months-long bedbound/couchbound PEM episode, saying "I have PEM" just doesn't get the debility across, so I'd probably say I've crashed. Just to be confusing, I guess.

 

[Denise Jasak]

Can someone perhaps advise? I pushed for many years feeling extremely ill,finally retired at 54. Retirement helped, but I continued to be completely up and down with CFS symptoms,often disabled, sometimes functional. Several years ago, I decided to see Dr. Cheney. After seeing him my health improved and quality of life improved. I Still relapsed, but it became a more infrequentevent..... Recently, doing nothing different, I started to go downhill...and can not get backonmyfeet.. I am in a constant cycle of feeling OK for a few days, maybe a week, being a little active, and then relapsing. This cycle is persistent for now 6months. I often feel like I have the flu; Feverish, uncomfortable in my own skin,weepy,just want to cry. EBV and HHV6 came back inactive. Anybody experience this pattern of the illness?

 

[Cort]

I had a very rough “crash” recently, and realized it’s quite different than a PEM episode. Am I using the words “crash” and “PEM” the same as everyone else?

CRASH: If I’m forced to be upright in a busy environment for more than a few minutes, the crash comes on VERY quickly. I feel pain and buzzing in my brain as I get overwhelmed and lose the ability to process conversation and other stimuli. I get confused and frantic to get out of the troublesome environment.

If I don’t get to a dark place and lie down immediately, I crash hard. Vomiting, vertigo, severe diarrhea, confusion, head pain, intolerance to light and sound, chills, shaking, and an overwhelming feeling of “DON’T MOVE ME!!!” I’ve lost consciousness on several occasions.

I’ve learned the only way to handle a crash is to get out of the room, or get home, ASAP (the trip home is pure hell), take 2 Valium and a Zofran, crawl in bed with heating pads and a barf bucket in a completely dark quiet room, and sleep it off for the rest of the day. Many times I end up laying on my bathroom floor until the "double bucket blues" pass.

Of course, I’m then left PEM’d for days after.

PEM: This comes on more gradually, with a sense that I’m overdoing it and will pay. It doesn’t take hold completely for at least a day, and isn’t generally as severe as a crash.

Anybody else? What are the different mechanisms at play here? Is the “crash” a dysautonomia thing and the PEM more an ME/CFS thing?

My neurologist thinks the crash episodes sound like low intracranial pressure secondary to connective tissue disorder. Whatever they are, they are hell - scary and completely debilitating. They are very similar to my first year bed bound with ME/CFS when I literally thought I was dying and didn’t know how I could go on.

That sounds so frigging painful. I am so glad my ME/CFS/FM as much as trouble as I have with it - is still pretty darn moderate! .

Your experience reminds me of Dan Moricoli's experience. He could feel it coming on and he would have to head to the bedroom fast. I don't know if he would experience vomiting but it as if something overcame his nervous system.

My guess is that you're right on the nose with dysautonomia thing...vomiting, vertigo, chills - that makes me think the autonomic nervous system altho I imagine other systems are involved.

Interesting about the PEM - because PEM does take some time to develop for me. Usually it's the next day or the day after that it's at its peak.

That's a great distinction between the two....I don't experience anything like the first (thank god) where things come on suddenly and then just totally wipe me out....

 

[Cort]

Can someone perhaps advise? I pushed for many years feeling extremely ill,finally retired at 54. Retirement helped, but I continued to be completely up and down with CFS symptoms,often disabled, sometimes functional. Several years ago, I decided to see Dr. Cheney. After seeing him my health improved and quality of life improved. I Still relapsed, but it became a more infrequentevent..... Recently, doing nothing different, I started to go downhill...and can not get backonmyfeet.. I am in a constant cycle of feeling OK for a few days, maybe a week, being a little active, and then relapsing. This cycle is persistent for now 6months. I often feel like I have the flu; Feverish, uncomfortable in my own skin,weepy,just want to cry. EBV and HHV6 came back inactive. Anybody experience this pattern of the illness?

Darn.... I don't know....I guess Cheney is not seeing patients anymore?

One thing you might try is stopping whatever supplements you are taking. That may sound weird but those symptoms you describe - feeling fluey, feverish, weak etc. - is what I experience when I take things that help me for very long. It seems that when I reach a plateau of health my health starts to fall apart. I believe my immune system is being pushing in the wrong direction. It's like my energy is improving and it's lifting all boats but my immune system is askew and the increased energy is knocking it further askew...That's a guess, course.

I would just go off your supplements/medications you can go off of - and see what happens.

 

[Denise Jasak]

Darn.... I don't know....I guess Cheney is not seeing patients anymore?

One thing you might try is stopping whatever supplements you are taking. That may sound weird but those symptoms you describe - feeling fluey, feverish, weak etc. - is what I experience when I take things that help me for very long. It seems that when I reach a plateau of health my health starts to fall apart. I believe my immune system is being pushing in the wrong direction. It's like my energy is improving and it's lifting all boats but my immune system is askew and the increased energy is knocking it further askew...That's a guess, course.

I would just go off your supplements/medications you can go off of - and see what happens.

Thanks very much for your reply.....Interesting take...I tried a bit of that, and am still experimenting. It's a vicious cycle, as when I feel worse I start to think it's because I've stopped taking something I really need. But I think I will adhere to that more strictly...But my gut feeling of this illness Has often been that "less" is "more."
Dr. Cheney is doing pretty well actually. I m not totally sure but he may take on new patients but only on a consulting basis. The clinic is officially closed. He is available to his former patients via phone, and emails.

 

[San Diego]

Thanks. It sounds like many of us do use similar language.

@Cort I’ll have to look up more of Dan’s stuff. Specifically, what he did about it. Maybe many of us have the sudden onset crashes, but we don’t really specify time and severity of onset. It’s one of the main reasons I’m virtually housebound - one too many times I couldn’t get home without help or was found unconscious. And yeah, it’s pretty brutal, and that’s coming from a tough-as-nails midwestern farm girl.

@IrisRV I’ve got my BP and HR pretty stabilized now. I naively thought that would solve the dysautonomia troubles. Maybe the other stuff is as Remy says?:

I think the way you're describing it, yes. My completely non-profession opinion is that the crash parts sounds like brain excitotoxicity. The fact that it's relieved by Valium (a GABA agonist) makes me think you've got some excitatory neurotransmitter (glutamate?) on overdrive after being exposed to noxious stimuli (WalMart) that isn't getting shut down quickly enough.

It certainly sounds like something doesn’t shut down appropriately. I’ve just restarted (again) GABA supplement several times daily. The “Valium Cure” makes it sound like anxiety, which it clearly is not. Thankfully, my doc recognizes Valium’s effect as a muscle relaxant, GABA agonist, and other things I don’t remember. It is definitely my rescue med, but I wonder if that’s just because it knocks me out.

Wouldn’t it be nice to have Spect scans during an episode? I wonder if Younger is considering this (or even knows about it?).

 

[Cort]

Thanks. It sounds like many of us do use similar language.

@Cort I’ll have to look up more of Dan’s stuff. Specifically, what he did about it. Maybe many of us have the sudden onset crashes, but we don’t really specify time and severity of onset. It’s one of the main reasons I’m virtually housebound - one too many times I couldn’t get home without help or was found unconscious. And yeah, it’s pretty brutal, and that’s coming from a tough-as-nails midwestern farm girl.

@IrisRV I’ve got my BP and HR pretty stabilized now. I naively thought that would solve the dysautonomia troubles. Maybe the other stuff is as Remy says?:


It certainly sounds like something doesn’t shut down appropriately. I’ve just restarted (again) GABA supplement several times daily. The “Valium Cure” makes it sound like anxiety, which it clearly is not. Thankfully, my doc recognizes Valium’s effect as a muscle relaxant, GABA agonist, and other things I don’t remember. It is definitely my rescue med, but I wonder if that’s just because it knocks me out.

Wouldn’t it be nice to have Spect scans during an episode? I wonder if Younger is considering this (or even knows about it?).

Dan has the most amazing story. All he did was pace very carefully and then exercise very, very slowly and carefully. Then he took up yoga and it slowly all just about disappeared over time. I think he's probably just about healthy now.

His arms used to flop around uncontrollably when he crashed. Sometimes his legs would too. His speech would become very slurred. There's a video of him speaking in that state - it's very evocative.

It makes me wonder. I never had the really debilitating completely wipe you out crashes but Dan did and it made him very, very careful. I've never been very careful; I wonder if I had if I would be a lot better.

 

[Croatoan]

I had a very rough “crash” recently, and realized it’s quite different than a PEM episode. Am I using the words “crash” and “PEM” the same as everyone else?

CRASH: If I’m forced to be upright in a busy environment for more than a few minutes, the crash comes on VERY quickly. I feel pain and buzzing in my brain as I get overwhelmed and lose the ability to process conversation and other stimuli. I get confused and frantic to get out of the troublesome environment.

If I don’t get to a dark place and lie down immediately, I crash hard. Vomiting, vertigo, severe diarrhea, confusion, head pain, intolerance to light and sound, chills, shaking, and an overwhelming feeling of “DON’T MOVE ME!!!” I’ve lost consciousness on several occasions.

I’ve learned the only way to handle a crash is to get out of the room, or get home, ASAP (the trip home is pure hell), take 2 Valium and a Zofran, crawl in bed with heating pads and a barf bucket in a completely dark quiet room, and sleep it off for the rest of the day. Many times I end up laying on my bathroom floor until the "double bucket blues" pass.

Of course, I’m then left PEM’d for days after.

PEM: This comes on more gradually, with a sense that I’m overdoing it and will pay. It doesn’t take hold completely for at least a day, and isn’t generally as severe as a crash.

Anybody else? What are the different mechanisms at play here? Is the “crash” a dysautonomia thing and the PEM more an ME/CFS thing?

My neurologist thinks the crash episodes sound like low intracranial pressure secondary to connective tissue disorder. Whatever they are, they are hell - scary and completely debilitating. They are very similar to my first year bed bound with ME/CFS when I literally thought I was dying and didn’t know how I could go on.

All your crash symptoms are also experienced during serotonin syndrome.
http://www.mayoclinic.org/diseases-conditions/serotonin-syndrome/basics/symptoms/con-20028946

I can bet that if you watched you diet you would find one big trigger would be high amine foods.
https://docs.google.com/spreadsheet...7JSW0w03spHfvz220emxJ7fus/edit?hl=en_US#gid=0

It does not shock me that a neurologist would not recognize these symptoms.

I used to have the same "crashes" by the way and one they led me to be admitted to the psychiatric hospital.

I

 

[Croatoan]

Thanks. It sounds like many of us do use similar language.

@Cort I’ll have to look up more of Dan’s stuff. Specifically, what he did about it. Maybe many of us have the sudden onset crashes, but we don’t really specify time and severity of onset. It’s one of the main reasons I’m virtually housebound - one too many times I couldn’t get home without help or was found unconscious. And yeah, it’s pretty brutal, and that’s coming from a tough-as-nails midwestern farm girl.

@IrisRV I’ve got my BP and HR pretty stabilized now. I naively thought that would solve the dysautonomia troubles. Maybe the other stuff is as Remy says?:


It certainly sounds like something doesn’t shut down appropriately. I’ve just restarted (again) GABA supplement several times daily. The “Valium Cure” makes it sound like anxiety, which it clearly is not. Thankfully, my doc recognizes Valium’s effect as a muscle relaxant, GABA agonist, and other things I don’t remember. It is definitely my rescue med, but I wonder if that’s just because it knocks me out.

Wouldn’t it be nice to have Spect scans during an episode? I wonder if Younger is considering this (or even knows about it?).

Glutamate and GABA are totally important as well, however, if she has excess serotoin she might not want to decrease glutamate since it might be the thing that is trying to help her reduce serotonin. Note in this study high glumamte decreases serotonin but increased dopmaine.
http://www.sciencedirect.com/science/article/pii/S0920121107003208
And this study
https://www.researchgate.net/profil...nditioning/links/53e0ec1d0cf24f90ff60c238.pdf

I am just unclear on the glutamate gaba role though, it might be that the changing level can be a direct cause or health issues, or a result of changed catecholamine levels.

 

[Croatoan]

For me PEM is delayed after usually after doing something for over an hour. I did a a lot of talking to a contractor yesterday and had to lug groceries in. My bad PEM day is 2 days after the major exertion so I know tomorrow I am going to pay for a few days.

This morning I felt too good (being lulled into a false sense of security) so did too much, cleaning, cooking. Immediately after stopping I'm going to crash. This will just make my PEM worse.

If I do to much around here, taking care of stuff I will crash within a few hours but that does not lay me up for days.

I don't get too much into the what was I doing, what is the mechanism because PEM=CRASH=SUCK

I do not know why I did not look into exercise and serotonin before but this post triggered the idea to use this as another connection.
http://onlinelibrary.wiley.com/doi/10.1111/j.1748-1716.1989.tb08715.x/abstract
http://www.sciencedirect.com/science/article/pii/0031938494901414

This was me, by the way. People always called me a "wuss" when I was younger because of it. :/

 

[Cort]

So interesting...serotonin syndrome syndrome is usually the result of taking drugs that increase serotonin levels. Could it be occurring naturally in some ME/CFS patients?

https://en.wikipedia.org/wiki/Serotonin_syndrome

Serotonin syndrome is not an idiopathic drug reaction; it is a predictable consequence of excess serotonin on the CNS and/or peripheral nervous system.[1] For this reason, some experts strongly prefer the terms serotonin toxicity or serotonin toxidrome which more accurately reflect that it is a form of poisoning.

The symptoms are often described as a clinical triad of abnormalities:[1][5]

• Cognitive effects: headache, agitation, hypomania, mental confusion, hallucinations, coma
• Autonomic effects: shivering, sweating, hyperthermia, vasoconstriction, tachycardia, nausea, diarrhea.
• Somatic effects: myoclonus (muscle twitching), hyperreflexia (manifested by clonus), tremor.

I would have thought we would be looking at low not high serotonin levels but the symptoms are quite close.

That's a nice chart of high amine foods. Do you know why they might trigger SS?

 

[Remy]

I would have thought we would be looking at low not high serotonin levels

There's actually some research that discusses potential high serotonin levels in MECFS. I'll dig it up later and start a thread.

 

[Cort]

There's actually some research that discusses potential high serotonin levels in MECFS. I'll dig it up later and start a thread.

I just added a poll to this thread - see the top post.

 

[Simon]

Great idea to have a poll, and to have patients discussing this whole issue, as I don't think any research questionnaires probe this well

Sadly none of the poll Qs really fit

If I overdo things a little, I crash ie sudden and dramatic loss of mental and physical energy. I crave sugar, need to lie down, go pale etc, though PEM (particularly pain and feeling ill) takes a little longer, sometimes not til the next day. Then it wanes/gets better over time (what's the difference?), usually with in a day or a few

Then there are relapses: much deeper crashes, worse PEM and takes months to years to get over.

 

[Cort]

Great idea to have a poll, and to have patients discussing this whole issue, as I don't think any research questionnaires probe this well

Sadly none of the poll Qs really fit

If I overdo things a little, I crash ie sudden and dramatic loss of mental and physical energy. I crave sugar, need to lie down, go pale etc, though PEM (particularly pain and feeling ill) takes a little longer, sometimes not til the next day. Then it wanes/gets better over time (what's the difference?), usually with in a day or a few

Then there are relapses: much deeper crashes, worse PEM and takes months to years to get over.

We definitely need to do a more complex poll or survey.

It sounds like you're experiencing a crash AND PEM ...

I added relapse and the Crash AND PEM options to the poll.

I have never, thankfully, experienced a sudden crash...For me I can feel it coming on and after I stop whatever exertion caused it it tends to get worse for a couple of days and then get better.

I get the sugar craving part - that's really interesting...

 

[Arashisora]

I get sudden crashes that feel like all the strength has been leached from my body, nausea, headache, body aches, etc. but, more often, symptom severity peaks more gradually, 2-3 days after exertion. I think this is because I've restricted my activity levels over the years so that I don't reach the point of crashing as much as I used to. I'm also taking a low dose of Neurontin (a GABA agonist). I've noticed that the "crashes" can also precede a cold or flu and follow within 15-20 minutes of vaccinations.

 

[Croatoan]

So interesting...serotonin syndrome syndrome is usually the result of taking drugs that increase serotonin levels. Could it be occurring naturally in some ME/CFS patients?

https://en.wikipedia.org/wiki/Serotonin_syndrome

Serotonin syndrome is not an idiopathic drug reaction; it is a predictable consequence of excess serotonin on the CNS and/or peripheral nervous system.[1] For this reason, some experts strongly prefer the terms serotonin toxicity or serotonin toxidrome which more accurately reflect that it is a form of poisoning.

The symptoms are often described as a clinical triad of abnormalities:[1][5]

• Cognitive effects: headache, agitation, hypomania, mental confusion, hallucinations, coma
• Autonomic effects: shivering, sweating, hyperthermia, vasoconstriction, tachycardia, nausea, diarrhea.
• Somatic effects: myoclonus (muscle twitching), hyperreflexia (manifested by clonus), tremor.

I would have thought we would be looking at low not high serotonin levels but the symptoms are quite close.

That's a nice chart of high amine foods. Do you know why they might trigger SS?

Too high or too low can cause problems. I am !ore "bipolar" in that respect.

Serotonin is an amine, and both it, and exogenous amines,are broken down by MAO. This is why they trek people to not eat certain foods, like cheddar cheese, when they are on MAO inhibitors.

I have an ide as to what happens, and it is that we deplete the cofactor for MAO (FAD) when we eat amines and does not leave enough left to break down amines like serotonin.

I am pretty sure one SNP I have in my MAOA gene essential gives me a built in MAOA inhibitor that I can correct with high dose riboflavin. I am able to eat high amine foods again with no effect.

By the way, Bananas are very high in serotonin.