Author Topic: Is POIS a version of CFS?  (Read 8404 times)


Muon

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Muon

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Re: Is POIS a version of CFS?
« Reply #17 on: December 05, 2020, 05:30:28 AM »
https://www.thenakedscientists.com/forum/index.php?topic=6576.msg603495#msg603495

B_Daniel:

Hi, Demo!
---------------------------

Recently, I've begun to believe that my symptoms align more closely with Chronic Fatigue Syndrome "CFS", than with POIS.

When I was 20, simply abstaining from sexual activity for a few days would have me feeling like a new person.  But from about 24 and onwards, there has always been some degree of the flu-like symptoms that lingered.  I'm 36 now.  Sex still heightens my brain fog, lethargy, anxiety, etc.  But the symptoms never disappear.

The main symptom I have, if I were to narrow it down to just one, is my lack of energy.  Some days are better than others, but on the whole, I wear out quicker when taking on stress and need more rest periods throughout the day than the avg person.  If I push myself too hard (can be mental or physical stress), I'll crash and be a zombie the next day.

I think I initially latched on to POIS as an explanation bc of how clear the connection was.  1-3 hours after sex, I felt awful nearly every time.  But I'm now thinking that sex is just a very concentrated way of depleting my energy.  And all forms of that push me over the edge.

Those with CFS often have low testosterone, gastro issues, and sensitivities to certain foods like wheat dairy and soy.  Treatments that help include TRT/HRT, NSAIDs, LDN, B Vitamins, Magnesium and a few other supplements.  So it's similar to what many have said have helped for POIS.

What I like most about characterizing my illness as CFS is that it's easier to talk to others about (physicians, family members), and there is a larger body of research, more established treatments, and a larger community to lean on.  On the POIS side, we're kinda each inventing the wheel, trying everything under the sun.  In this forum, we've all seen the posts of "If I stand on my head for 30 minutes and then scratch my belly really hard, my POIS goes away".  In the CFS support groups, I haven't seen that.  There's more discussion of the various established treatments. After you've tried those 20 things, you can rest knowing you've tried the bulk of what's likely to help, and then focus on stress reduction and improving your health overall.
 
Anyway, just wanted to share this, as I view it as a major insight for me.  If I find anything that works for me on the CFS side I'll of course share it over here.

If this sounds like something you'd like to learn more about, here are a couple of helpful pages I've come across

https://www.healthrising.org/blog/2018/12/10/the-basics-a-guide-to-learning-sharing-and-making-a-difference-in-chronic-fatigue-syndrome-me-cfs/

https://www.healthrising.org/blog/2018/12/01/tips-newbies-fibromyalgia-chronic-fatigue-syndrome-me-cfs/

Muon

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Re: Is POIS a version of CFS?
« Reply #18 on: December 05, 2020, 05:33:38 AM »
POIS thread on Phoenix Rising:

https://forums.phoenixrising.me/threads/postorgasmic-illness-syndrome-pois.81982/

You can find it under the differential diagnoses header.

Muon

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Re: Is POIS a version of CFS?
« Reply #19 on: December 05, 2020, 06:08:32 AM »
https://www.thenakedscientists.com/forum/index.php?topic=20239.msg236753#msg236753

Quote from: Girlwind
The POIS is very secondary to me now. The big issue is my long term CFS, which along with POIS, are just symptoms
of the hormones being in various states of deficiency. I'm so glad to be on the right track--finally. It only took 31
years.

LOL!

Muon

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Re: Is POIS a version of CFS?
« Reply #20 on: December 09, 2020, 07:40:28 AM »
Quote from: J.G
It's worth noting that observations regarding POIS in / and / or MECFS go back (at least) some 25 years. Noted ME specialist Dr. Jay Goldstein in his 1996 Betrayal by the Brain:

"Several of my male patients have complained that they feel exhausted for several days after ejaculating. Although little is known about the central neurochemistry of orgasm, it appears that NE [norepinephrine] facilitates it, and that NE is depleted after ejaculation. If a male neurosomatic patient were deficient in NE prior to sexual activity, ejaculation could thereby worsen his symptoms" (Goldstein 1996: 63).

Norepinephrine is synthesised from dopamine. Goldstein postulates a "dopaminergic hypofunction" in MECFS.
Ref

« Last Edit: December 09, 2020, 11:01:57 AM by Muon »

Journey

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Re: Is POIS a version of CFS?
« Reply #21 on: December 09, 2020, 12:22:57 PM »
Quote from: J.G
It's worth noting that observations regarding POIS in / and / or MECFS go back (at least) some 25 years. Noted ME specialist Dr. Jay Goldstein in his 1996 Betrayal by the Brain:

"Several of my male patients have complained that they feel exhausted for several days after ejaculating. Although little is known about the central neurochemistry of orgasm, it appears that NE [norepinephrine] facilitates it, and that NE is depleted after ejaculation. If a male neurosomatic patient were deficient in NE prior to sexual activity, ejaculation could thereby worsen his symptoms" (Goldstein 1996: 63).

Norepinephrine is synthesised from dopamine. Goldstein postulates a "dopaminergic hypofunction" in MECFS.
Ref

I wonder which are the earliest records out there clearly talking about someone reporting fatigue/brainfog/physical/etc. symptoms after orgasms is there any such data from let's say the 70s or 80s? The earliest POIS appearance I read about was from a Reddit user named /u/c-rockett88 who got it in the 70s and has relief from it by taking DAO, C vitamin, D vitamin and some other supplements and he believes it's excess Histamine causing POIS for him but I wonder if there are more POISers who got it around that time or even earlier unfortunately ones that might have had it earlier would be harder to find because they could be less likely to use the Internet or might not know POIS is a thing and so on etc.

Muon

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Re: Is POIS a version of CFS?
« Reply #22 on: December 09, 2020, 12:29:40 PM »
See contents: Book preview

an-y-more

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Re: Is POIS a version of CFS?
« Reply #23 on: December 10, 2020, 09:48:22 AM »
Quote from: J.G
It's worth noting that observations regarding POIS in / and / or MECFS go back (at least) some 25 years. Noted ME specialist Dr. Jay Goldstein in his 1996 Betrayal by the Brain:

"Several of my male patients have complained that they feel exhausted for several days after ejaculating. Although little is known about the central neurochemistry of orgasm, it appears that NE [norepinephrine] facilitates it, and that NE is depleted after ejaculation. If a male neurosomatic patient were deficient in NE prior to sexual activity, ejaculation could thereby worsen his symptoms" (Goldstein 1996: 63).

Norepinephrine is synthesised from dopamine. Goldstein postulates a "dopaminergic hypofunction" in MECFS.
Ref

I wonder which are the earliest records out there clearly talking about someone reporting fatigue/brainfog/physical/etc. symptoms after orgasms is there any such data from let's say the 70s or 80s? The earliest POIS appearance I read about was from a Reddit user named /u/c-rockett88 who got it in the 70s and has relief from it by taking DAO, C vitamin, D vitamin and some other supplements and he believes it's excess Histamine causing POIS for him but I wonder if there are more POISers who got it around that time or even earlier unfortunately ones that might have had it earlier would be harder to find because they could be less likely to use the Internet or might not know POIS is a thing and so on etc.
I remember someone on this forum posted about symptoms appearing back in 80s. This person said it developed after antibiotic use. 

Muon

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Re: Is POIS a version of CFS?
« Reply #24 on: December 10, 2020, 11:06:25 AM »
I remember someone on this forum posted about symptoms appearing back in 80s. This person said it developed after antibiotic use.

https://poiscenter.com/forums/index.php?topic=3098.msg31156#msg31156

Muon

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Re: Is POIS a version of CFS?
« Reply #25 on: December 10, 2020, 06:51:08 PM »
Video about Marian Lemle's Hydrogen Sulfide theory

I get the impression that POIS puts you into a state of semi-hibernation. I believe a few POISers here said the same thing.


Mr Raba

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Re: Is POIS a version of CFS?
« Reply #27 on: December 24, 2020, 12:20:20 AM »
Hi,

I actually flew to LA to see Dr. Jay Golgstein circa 1990.  Such a nice guy. I had read his book. Maybe it was not fully published then.

He tried sequentially many of the meds in his list. I could not tell what did what because of the short time they were all administered while in his office. Eventually and due to the literature of the time I tried  oxytocin shots. That went badly.  DHEA went far worse. It gave me a bad case of OCD that took more than a decade to finally go away. It worked some first, but then I caught chicken pox while on it and what a horrible experience, also and when  I tried to go back on it. Like going insane. What I learned with the decades and trials is to very careful taking active hormones that put a forcing function on my tenuous hormonal equilibrium.


Goldstein told me that he knew of several men with just POIS symptoms that had sought his help. So my combo case (POIS and CFS which are labels describing symptoms) was nothing new to him. He did not have a cure for either but it was so nice to talk to great Dr. that got our suffering and dedicated his life to the neuroscience of these conditions. Of course CFS has come far ahead since then.

Although Goldstein knew the conditions were related somehow more than 25 years ago, I am just starting to see greater interest from some POISERs and CFSers on looking at what light one condition might share on the other.

His book is very interesting history. The new science on CFS that helps me as a combo sufferer on both fronts is light years ahead and is well
described and published in this site. 

https://www.healthrising.org/


   
« Last Edit: December 24, 2020, 12:33:47 AM by Mr Raba »
Simultaneous onset of CFS and POIS since Feb 1993. 
Married since 1989.

Helped by Immunocal (I explained how to take in previous posts).  Significant relief day one and day two.  It affects neurotransmitters!

Muon

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Re: Is POIS a version of CFS?
« Reply #28 on: December 24, 2020, 10:55:31 AM »
This is mindblowing info Mr Raba. Do you know if he managed to fix at least one POISer? And if so what did he give this patient? Thanks for sharing this.
« Last Edit: December 24, 2020, 11:19:52 AM by Muon »

Muon

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Re: Is POIS a version of CFS?
« Reply #29 on: December 24, 2020, 01:45:25 PM »