Post-exertional malaise or not?

[xchocoholic]

Hi

I have read alot about TTT an wil never have one as i don tno think they tell you anything useful and make you crash majorly
MY OI was diagnosed by symptoms, history and correct blood prsessure measurements tht showed a drop of 20 mmHG when i stood up

( you need to rest firs quietly and calmy in a darkened room for 15 min - no talking
thenk measure BP every 2 mins for 10 mins lying then satnd and measure same again standing with a chair back in frontt of you for support - els you panic and get more adrenilaine out

so my machie alarmed twice before it gae a readigof a 20 mm systolic drop - then buy the next reading it had coreected up - th tiw how quicly our adrnaline repsonse kicks in.

I have read tht if you dread standing in queues - as i do - you likely have OI and do not need a TTT to tell you this.

There are other reasons for not liking to stand in line. For ex, I used to feel like I was standing on a rocking
boat when I was in line but that went away when my ataxia did. Ataxia makes standing in line
difficult too.

It takes my heart and maybe other organs an hour, not 15 minutes, to recover if I've been up too long. I get pots after 9 - 10 minutes
of being upright.

I used my hr bp monitor on several occassions to see if I could determine how my oi affects me.

After becoming potsy, I laid down. My hr went into the 70 range after laying down for 15 minutes but dropped into the mid 60s after 45 minutes. I feel best in the mid 60 range.

I already knew it took me an hour to feel "healthy" again but this test explained why. By healthy I mean my lungs, brain, etc work freely again. The tightness in my chest is gone so I can take a deep breath.

Another time I tested what happens if am potsy and I get up before an hour and found that my hr goes back up to my pots
range within the first minute. If I wait an hour, it remains in my normal range for 9 - 10 minutes.

I'm pretty sure this is covered in the diy pmttt thread. Others detailed their experiences too.

Btw, I'm assuming not everyone gets sick doing the ttt. But doing a pmttt yourself with someone standing by to catch you if needed can help you understand your oi. Tc .. X

 

[xchocoholic]

I'd google mental exhaustion treatment. Imho it would be a shame to think this was pem and untreatable
if there are others who've found solutions for this.

I get this too so I understand what you're talking about. Like you I recover overnight if not sooner. Eating something
healthy, particularly a healthy meat, helps within 20 minutes sometimes.

Imho, Pem isn't that easy to recover from. Mine can last up to 3 days and requires complete rest because I'm a zombie
with no co-ordination. All my cognitive abilities are slowed. Mostly asleep but with my eyes open is a better description.lol.

Hth ... X

 

[Sherlock]

In 2009, Alan Light et al published an article in the Journal of Pain titled:

“Moderate exercise increases expression for sensory, adrenergic and immune genes in​

chronic fatigue syndrome patients, but not in normal subjects”​

which showed that “increases [in gene expression] were also seen in the CFS subgroup with comorbid FMS and were highly correlated with symptoms of physical fatigue, mental fatigue and pain.”

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2757484/pdf/nihms125894.pdf

Here is Kathy Light talking about the study, as it was beginning:

Exercise reduces the receptors that probably are kicking off PEM. The trick might very well be to only do exercise that won't create hypoxia.

 

[Sherlock]

PEM means malasie after physicala exercise

I just discovered the work of the Lights this week. They might have the connection between exercise-induced and mental-stress induced PEM-like symptoms: monocytes have receptors (TLR4) which get activated by exercise. In PWCs the number of TLR4s get increased after exercise, which is bad because then the monocytes end up releasing IL-6 and other inflamers.

Monocytes also have other receptors that get triggered by mental stress/effort. So then the monocytes release the same IL-6 etc.

That kicks things off, then for whatever reason it can be hard to get out of that.

Hypoxia (as from OI) can also trigger monocytes (and macrophages, etc) to do the same thing. "Heat shock proteins" (which really should be called stress-detector proteins, since heat is not always involved) trigger the receptors.

Thinking out loud here as I am digesting the Light stuff...

How does this help? Naltrexone/naloxone inhibit TLR4s, but obviously that's not a perfect answer or everybody would be reporting miracles benefits by now.

Btw, heat shock proteins are also involved in creating leaky gut after exercise.

 

[soxfan]

I have talked with my doctors about this so many times and I am not sure they fully understand what I am talking about. They know I can do physical exercise and have no issues. I am at the point now where I know I am going to feel like crap when I do any of these mental tasks so I I expect it to happen. My sleep is beyond horrible...
Not the fact that I can't sleep but that I do sleep but feel horrible in the mornings. I am sure that affects my mental abilities.

No doctor has been able to get me a quality sleep...I wake most mornings feeling spacey...sometime my eyes feel burning and I feel just off the entire day..almost like I am off kilter but I am really not. I know the moment I get up from bed if it will be one of those days...

If my sleep could be corrected I would feel 80 percent better during the day...

 

[xchocoholic]

imho, we pwcs understand each other better than our doctors. It's just because we have so
many similiar symptoms and we're living with these most or all the time.

Lack of sleep kills me too.

It took me a long time to come up with a sleep regime that works everytime. This may not
work for others but I use between 50 - 300 mg natural factors 5htp. This depends on
how much stress I'm under and how much caffeine I had. No other brand worked for me.

Plus 2 - 5 mg melatonin. I'm using solgar for now but country life worked too.

I was using theanine to stop my mind from racing and help with my myoclonus but I switched back to
Klonopin. I'm using .125 - .5 depending on symptoms.

Gotta run. Hope u feel better soon. X

 

[Sherlock]

Plus 2 - 5 mg melatonin. I'm using solgar for now but country life worked too.

Alas, I've taken up to 30mg with no effect. There was a guy who posted here about taling 100mg, with doctor okaying that.

 

[soxfan]

I just mowed the lawn...total walking distance 4.22 miles and I feel good! Like I said...it is the poor quality sleep that is doing me in. I think it also affects my mental capacity. I have problems with stress as well but I also think that has to do with poor sleep...
I am supposed to try tryptophan but am afraid to. I ordered it online in a powder form and am just to put a little on my finger and lick it off. It seems like every time I try something new it backfires. I am at the point of giving up! I still think my mental exhaustion is a form of PEM...?

 

[Allyson]

I just mowed the lawn...total walking distance 4.22 miles and I feel good! Like I said...it is the poor quality sleep that is doing me in. I think it also affects my mental capacity. I have problems with stress as well but I also think that has to do with poor sleep...
I am supposed to try tryptophan but am afraid to. I ordered it online in a powder form and am just to put a little on my finger and lick it off. It seems like every time I try something new it backfires. I am at the point of giving up! I still think my mental exhaustion is a form of PEM...?

L tryptophan is totally natural and harmless - I often take it wif no ill effect

not needing it atm as IM vit B1 and chondriatin and glucosamine supps - plus cuttig out all caffeine and gelati and red food additives - means i am having a great sleep now most nights - sorry to brag but it is a a wondeful feling even if i dont wake up fuly refreshed and wake at 4-6 am but get bck to sleep again for several hours.

 

[xchocoholic]

Alas, I've taken up to 30mg with no effect. There was a guy who posted here about taling 100mg, with doctor okaying that.

Wow. I have no idea why a doctor would recommend such a high dose of melatonin. I can't take more
than 5 without feeling sleepy all day the next day. I suspect this doc just read about melatonin and
isn't dealing with a sleep disorder so he / she can't perform self experimentation. Having the symptoms
is what makes experimentation so effective.

5htp and theanine work with melatonin for sleeping. Natural factors actually has a sleep supplement with
all 3 but I need a different amounts than what's in this. I had a thread on all this once. I can't think
of how to find it right now. Googling each ingredient should explain why the combo is effective.

I used theanine for about 5 years before realizing klonopin worked better for my nocturnal myoclonus.
Even tho theanine helped this I was obviously still jerking enough in my sleep to stop me from
feeling 100% rested in the morning. I try to minimize the klonopin because it slows down my already
slow brain.

Hth ... X

 

[xchocoholic]

I just mowed the lawn...total walking distance 4.22 miles and I feel good! Like I said...it is the poor quality sleep that is doing me in. I think it also affects my mental capacity. I have problems with stress as well but I also think that has to do with poor sleep...
I am supposed to try tryptophan but am afraid to. I ordered it online in a powder form and am just to put a little on my finger and lick it off. It seems like every time I try something new it backfires. I am at the point of giving up! I still think my mental exhaustion is a form of PEM...?

It's well known that sleep deprivation leads to cognitive problems. I would just start with a low dose of whatever
you chose.

As someone who gets both mental exhaustion and pem I don't consider what you're describing as pem.
Imho, treating this as if it were pem is only going to interfere with you getting to the root cause of this.
I can control mental exhaustion with sleep, food (a real meal, caffeine or DEX4) and rest. I can't stop Pem.

Tc .. X

 

[A.B.]

I don't have problems sleeping through, and only minor problems falling asleep, but my sleep is unrefreshing and I feel miserable upon waking up.

I believe that my sleep quality depends in part on blood glucose levels during sleep. I have a tendency towards subtle and sometimes frank postprandial hypoglycemia during the day, and if I eat slowly digested food right before going to sleep it improves sleep quality.

There also appears to be a connection between sub-optimal blood sugar levels during sleep and occasional minor seizures (ie. tremors or sounds in my brain) or nightmares.

 

[soxfan]

I really don't have problems sleeping either...I wake up feeling horrible and unrefreshed too. I definately agree with the glucose factor as there are some nights when I am having adrenaline problems but at the same time I feel hungry even though I eat a well balanced dinner.
I am prone to nightmares as well...I really can't complain about my sleep because I almost always feel like I am sleeping well. But the quality of the sleep stages is really bad...

 

[soxfan]

I can't control the mental exhaustion...even if I only worked a couple hours it would still happen. I am also tired during the day but I think that is sleep related. I think maybe the Lyme disease I had back in 2004 maybe caused damage to my brain. Although when first sick I didn't have this problem as I was still working full time without a problem.
I don't think I will ever get an explanation as to why this happens to me. I have read though that PEM can be caused by mental exertion and can also occur immediately...

 

[xchocoholic]

I don't have a hypoglycemia problem at night but a freind of mine has it and eats one of those Diabetic bars before bed. I have to eat something around 7 - 8 pm tho or else I feel weak at bedtime at 10 - 11.

I used to be a computer programmer so my job was constantly mentally taxing. Even before getting sick I'd get up from my desk and walk around every hour or so just so I could focus again. I saw that others didn't need to do this but I did. When I got CFS, my brain turned to mush ... so work was out of the question. Most of that cleared up quickly after changing my diet tho.

I was wondering if you have what I've termed Chronic Low Grade PEM (CLG PEM). I made this term up after going through physical therapy and a self inflicted exercise program at seperate times a few years ago. Basically, my brain and body were worn out from exercising but I kept pushing myself to do it anyways. After awhile I realized that I was only functioning mentally and physically at about 50% of my non CLG PEM state. After I stopped pushing, and went back to pacing myself, I went back to being my normal 100%.

I get CLG PEM everytime I push myself and it takes me about a week to get back to my "normal". It's really hard for me to rest after pushing myself for any length of time but if I pace myself and don't push, resting is easier. It's like once I get going, it's hard for my body to stop. So whatever happens to me when I'm in CLG PEM it takes a while for my body to undo. Does that make sense ? It does in my head .. but I'm in CLG PEM now.

tc ... x

 

[xchocoholic]

I really don't have problems sleeping either...I wake up feeling horrible and unrefreshed too. I definately agree with the glucose factor as there are some nights when I am having adrenaline problems but at the same time I feel hungry even though I eat a well balanced dinner.
I am prone to nightmares as well...I really can't complain about my sleep because I almost always feel like I am sleeping well. But the quality of the sleep stages is really bad...

I'm not sure if this is related but when I had h pylori they liked to chew on my stomach lining in the middle of the night. I thought I was hungry. If you google h pylori, you'll see that this symptom is common.

I don't have problems sleeping through, and only minor problems falling asleep, but my sleep is unrefreshing and I feel miserable upon waking up.

I've seen this terminology used to describe someone with a sleep disorder. Have you had a sleep disorder test ? That's how my nocturnal myoclonus was dx. My body jerks me awake when I go into REM.

tc .. x

 

[soxfan]

I just had a bunch of blood work and stool analysis done. The only thing they found was I had very little good bacteria. I am now taking VSL 3 to help correct that. I only get the hunger feeling during the long nights of adrenaline rushes which happen once or twice a month...

 

[svetoslav80]

According to many people with CFS, PEM/PENE can't be mistaken because the symptoms are very bad. It seems to me that you're experiencing the normal type of malaise, which of course is even worse when you're sick.

 

[soxfan]

Honestly....I don't know what I have. The doctors always tell me to keep exercising (walking) as long as I feel okay and since I do then I keep on. Pacing makes no difference to me since I wake up tired to begin with. Even if I do nothing all day but the basic things I still get even more tired in the afternoons to the point where I have to rest (never sleep).

If I go out shopping...working...socializing I get a different kind of fatigue...I mean it feels different but I still have to lay down in the afternoons or else I will never make it through the rest of the day. I have fatigue every day to some degree no matter what I do or don't do. I can even just sit in a chair all day and I will still feel extremely fatigued.

Since I can't seem to sleep during a sleep study I don't think I will ever find out what the problem is during my sleep. I can tell you I dream a lot and if I do wake I usually fall back to sleep quickly....but then I also have periods of time where my sleep is bad and I wake all night.

My major problem is chronic fatigue....it never goes away...ever...

 

[Allyson]

Honestly....I don't know what I have. The doctors always tell me to keep exercising (walking) as long as I feel okay and since I do then I keep on. Pacing makes no difference to me since I wake up tired to begin with. Even if I do nothing all day but the basic things I still get even more tired in the afternoons to the point where I have to rest (never sleep).

If I go out shopping...working...socializing I get a different kind of fatigue...I mean it feels different but I still have to lay down in the afternoons or else I will never make it through the rest of the day. I have fatigue every day to some degree no matter what I do or don't do. I can even just sit in a chair all day and I will still feel extremely fatigued.

Since I can't seem to sleep during a sleep study I don't think I will ever find out what the problem is during my sleep. I can tell you I dream a lot and if I do wake I usually fall back to sleep quickly....but then I also have periods of time where my sleep is bad and I wake all night.

My major problem is chronic fatigue....it never goes away...ever...

Hey Sox - one tip - my doc tell me walknig is the very worst thing we can do for ME - a lot of time upright for little result so you might try cutting that out for a while and see if that helps

It is evidently no hleig you to do it as youare still ill.

If i had a dollar for every post i have read over the years that included - I am not better and I am walkig as mucha s i can ......

Maybe try pilates or gente exerscsie in water - nottoo hot a- ans see if that help some.

Shopping he says is even worse as you are moving slowly and stopping frequently.

hope this helps

A