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How long do your PEM setbacks last?

vli

Senior Member
Messages
653
Location
CA
isn't it true that dr E will give you valcyte but not chia (maybe other dr E patients with such experience can chime in here)?
 

vli

Senior Member
Messages
653
Location
CA
Yes aerose that's what i meant. U already know that valcyte can be obtained from dr E (what i suspected), but I'm pretty sure Chia will give you equilibrant.
 

SOC

Senior Member
Messages
7,849
Yes aerose that's what i meant. U already know that valcyte can be obtained from dr E (what i suspected), but I'm pretty sure Chia will give you equilibrant.
You don't need to see Dr Chia to get Equilibrant since it's OTC, so you can try Equilibrant while still seeing Dr Enlander. :)
 

Aerose91

Senior Member
Messages
1,400
Is it safe to take Equilibrant without informing my doctor? Or while I'm also on valcyte? I've always been the type that doesn't even take aspirin unless I absolutely have to, lol
 

Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
During the more severe periods, which have lasted for years at a time, my PEM would have delayed onset of 24-48 hours and would last up to 4 weeks. During better times, I would still have delayed responses but only 8-24 hours for onset and the PEM lasting maybe one day.

My experience is also that causing the crashes (PEM), regardless of the severity, caused overall disease progression. Had I known 20 years ago what I know today, I 'm certain that I would never have progressed to a more severe chronic state lessening chances of returning to a mild disease.
 

Aerose91

Senior Member
Messages
1,400
During the more severe periods, which have lasted for years at a time, my PEM would have delayed onset of 24-48 hours and would last up to 4 weeks. During better times, I would still have delayed responses but only 8-24 hours for onset and the PEM lasting maybe one day.

My experience is also that causing the crashes (PEM), regardless of the severity, caused overall disease progression. Had I known 20 years ago what I know today, I 'm certain that I would never have progressed to a more severe chronic state lessening chances of returning to a mild disease.

Ain't this the truth. All of my PEM setbacks have been delayed 48-72 hours and have caused permanent disease progression. If only I had known to rest as much in the beginning but I didn't have any fatigue- I had no idea
 

SOC

Senior Member
Messages
7,849
Is it safe to take Equilibrant without informing my doctor? Or while I'm also on valcyte? I've always been the type that doesn't even take aspirin unless I absolutely have to, lol
I dunno. :) I took Equilibrant after Valcyte. I'm not one to do multiple therapies that might interact, but I'd consider them together since one is an immune modulator and one is an antiviral which might be compatible. I'd ask Dr E and go with what he says.
 

vli

Senior Member
Messages
653
Location
CA
I'd consider them together since one is an immune modulator and one is an antiviral which might be compatible. I'd ask Dr E and go with what he says.
That's interesting. I always thought of equilibrant as a "herbal antiviral", so i've never seen it as an immune modulator. i guess my suggestion was if aerose didn't know which one to go for (or whether to try both) he could read more about other ppl's experiences with either pill on here, so the decision still lies with him and not dependent on which doctor he's seeing.
 

SOC

Senior Member
Messages
7,849
That's interesting. I always thought of equilibrant as a "herbal antiviral", so i've never seen it as an immune modulator. i guess my suggestion was if aerose didn't know which one to go for (or whether to try both) he could read more about other ppl's experiences with either pill on here, so the decision still lies with him and not dependent on which doctor he's seeing.
To be honest, I'm not sure how it exactly works against viruses. Is it Equilibrant's effect on the immune system that helps control viruses, or does it act directly on the virus? I suspect it's a little of both. The website only talks about the immune-modulating properties, but that doesn't mean it doesn't have other properties as well.

While we all have to make treatment decisions for ourselves, I think it's wise to consult a knowledgeable ME/CFS doctor before mixing multiple products that might affect the same system. Some meds and supplements do not work at all well together and can sometimes be very harmful together. I prefer to consult a knowledgeable doc who is likely to know more than me about such interactions. 'Consult' being a critical word there. I don't take everything every doc tells me a face value anymore.
 
My PEM symptoms seem to start about 2-4 hours after any exertion, and peak around the 24 hour mark. I usually feel a marked improvement 1 or 2 days after that... the fog lifts. It lasts about 3-4 days maximum.
 
Messages
1,082
Location
UK
During the more severe periods, which have lasted for years at a time, my PEM would have delayed onset of 24-48 hours and would last up to 4 weeks. During better times, I would still have delayed responses but only 8-24 hours for onset and the PEM lasting maybe one day.

My experience is also that causing the crashes (PEM), regardless of the severity, caused overall disease progression. Had I known 20 years ago what I know today, I 'm certain that I would never have progressed to a more severe chronic state lessening chances of returning to a mild disease.

Ditto to that!
 

jann1033

Senior Member
Messages
176
I'm very curious to know because I feel like I'm on an island of my own here. Here's why; if I overexert it takes about 3-4 days for the "malaise" to start, but once it does, the effects are permenant. I have never once recovered even 1% from the changes in my brain after a period of PEM.

Fatigue is not a big issue for me. It's massive, massive dissociation, memory loss, complete emptiness and silence in my brain and complete apathy and anhedonia don't even touch describing how little I can feel. There's just soooo much missing in my brain and experience of the world. I can't even describe how much is missing

If I overexert the effects always happen while I'm sleeping. I will get woken up with a feeling of being "revved up"; intense nerve and muscle weakness and burning, sweating, intense cold, joint pain, pounding heart, pupils dilated as hell and the coup de gras- my brain will pull back further. As in, I will feel more emptiness and hollowness and dissociation.

After a whole night of this usually the physical symptoms will calm down a bit and then mostly wear off in about a week, but I'm always left with some deficit. My brain, however, will not recover..... at all. I've been sick with this for 8 months now and it's like I have an entirely new disease from what I started with because of the effects of PEM on my brain. In 8 months I haven't recovered even 1% brain function from any setback I've had thus far.

Honestly? If I could actually feel the real world I would probably be going into insanity at how bad I am but somehow I'm holding it together. I'm curious, has anyone who has had setbacks from overexertion spiral downward and have the effects be seemingly permenant?
Not from PEM, I usually get over that but from a flare I never get it all back. That's one reason I figured it was better to stay in my envelope. I never know when PEM will lead to a flare and ill lose something else.
Just a thought but have u changed a med? I ask because I never had a problem with mental illness til a goofball Dr. kept nagging me to try cymbalta for my pain. It totally messed up my brain and created a bad flare but as soon as I stopped it my brain went back to normal, physically never went back 100% but mentally did.
 

jann1033

Senior Member
Messages
176
I remember when I first got sick it felt like my brain was an empty white box, more recently my "brain" problems are related to garbled speech, basically no memory, especially associated with numbers, not knowing objects names(not the routine tip if the tongue, more like if someone asked me a word for something in a language I don't speak so no idea lol, lack of focus, inability to multitask, just not hearing things. Typing is a real problem.
Some things come and go, sometimes out of the blue. They are worse the more tired I am but except for speech usually there to a degree. I don't really think they have gotten progressively worse, they have been bad since the get go but I haven't had the white box thing for decades.
I've never felt apathetic or anything similar and oddly some things, like spacial recognition tests , I have improved. I think I probably have created new pathways to get around the things I can't do anymore
Lol I realized in the last post said my brain is normal then list anything but normal things. The cymbal ta made me suicidal( I mean had it all planned not just considered it) and sleepy. For the last 20 yes or so I've had insomnia except at the start of a bad flare but then slept 24/7.I think it actually caused mdd in me
 
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PNR2008

Senior Member
Messages
613
Location
OH USA
I hurt the next day and usually worse the second day, both days I'm bed bound. My stress level has been worse the last 5years and it reflects in my energy. Pacing doesn't seem to work for me because I think I should be doing nothing but living alone makes that impossible.

Also staying in bed makes me feel like I will never get out so I push myself with some small but necessary task and then the adreneline makes me feel I can do more, it's almost like a high so I do more go to bed on a heating pad happy then wake up like a zombie for at least 2 days.

If I'm lucky I'll rest and get to my regular functioning which is bad but I can get worse.