Author Topic: Is POIS a version of CFS?  (Read 53948 times)

Mr Raba

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Is POIS a version of CFS?
« on: February 13, 2016, 11:31:27 AM »
Dear friends,

I have said this years before. I have realized that POIS and CFS are connected. The major difference is symptoms duration and O trigger. Otherwise symptoms, treatments, what makes things worse o better are almost identical.

Years after my saying this and being swiftly dismissed.  This forum is finding the slow and painful way the same things it took decades for CFS people to learn and discover. I believe POIS and CFS have the same underlying mechanism. I have both. But only because I stumbled into CFS on the web first. POIS did not exist on the web back in 1993! 

Now people find POIS and the label is put on. Perfect match. Search stops.

I believe that CFS and POIS are in the same disease spectrum. The answers to many questions asked here are already known and fully documented in CFS research. Like alcohol intolerance.

I think that in time POIS will be found to be a subset of CFS.


in CFS all these are involved:

Vagus nerve involvement
CNS imbalance
Macroglial cells involvement
Methylation involvement
Leaky gut and and abnormal microbine behavior.
Inability to read at times, or concentrate
Flu like symptoms
Sore throat
Headache
Night sweats
Excerciste intolerance
Hormonal axis imbalance
Immune and cytokine activation
Detox blocks
 Visual stress.
Low vit D
Borderline testosterone
Thyroid issues
Balance issues
Anxiety
Social anxiety
Word finding problems
Dysautonomia
Etc etc etc.


And the same supps work!  The list is too long to list. The match is almost incredible.

So please take a look and see for yourself. Lets not be so sure they are completely different diseases. They only differ on trigger and symptoms duration. Even the 2 to 5 day relapse is common. Some even months.


I have known several peolple that have both. Or actually relized they have CFS with O  trigget. As opposed to just CFS.
I even wonder if CFS in men is mostly found as POIS. Hence why men are underrepresented in CFS.


See this blog for starting to evaluate by yourself what the overlap is between CFS and POIS.
We can  leverage a lot of this research and spend our limited research funds in light of what an almost identical, hugely overlapping condition has already found out.

http://www.cortjohnson.org/

Good health to us all!  😊😊👍🏽
« Last Edit: February 15, 2016, 03:00:36 PM by mrraba »
Simultaneous onset of CFS and POIS since Feb 1993. Married since 1989.

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

demografx

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Re: Is POIS a version of CFS? Rituximab great hope.
« Reply #1 on: February 13, 2016, 07:12:19 PM »
This drug, Rituximub, poses a life-threatening side-effect that -- once it happens -- there's no turning back.

Please remove the reference and please do not recommend it on this forum.

Thank you.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Mr Raba

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Re: Is POIS a version of CFS?
« Reply #2 on: February 15, 2016, 03:11:00 PM »
The censored drug  (in this forum) is used for multiple purposes. If you read my post carefully I did not recommend it. Just stated that  professional research trials have found it effective in CFS.  Not as something to try but as scientific medical research knowledge.

Since you are the administrator I have politely complied with your request.


If you want to completely remove mention of this drug you would need to erase it from your post too.

« Last Edit: February 15, 2016, 03:13:15 PM by mrraba »
Simultaneous onset of CFS and POIS since Feb 1993. Married since 1989.

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

Stef

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Re: Is POIS a version of CFS?
« Reply #3 on: February 15, 2016, 05:08:04 PM »
Dear friends,

I think that in time POIS will be found to be a subset of CFS...They only differ on trigger and symptoms duration.

I have known several peolple that have both. Or actually relized they have CFS with O  trigget. As opposed to just CFS.
I even wonder if CFS in men is mostly found as POIS. Hence why men are underrepresented in CFS.

Hi, mrrabba --

There are some overlapping symptoms between CFS and POIS. But there also some major differences.

Ejaculation is not and never has been considered a trigger for CFS. That's probably the biggest difference between the two conditions, and is an important one.

Also, one of the strict criteria for diagnosing CFS is severe post-exertional fatigue. But several forum members here have advised that exercise is a great help to them. One forum member has run a few marathons. Another is an avid cyclist -- he participated in a cycling tournament to raise funds for rare disorders for the University of Pennsylvania.

In fact, the Institute of Medicine believes that CFS should be re-named, “systemic exertion intolerance disease,” because this is such an outstanding symptom. http://www.webmd.com/chronic-fatigue-syndrome/news/20150210/new-name-new-criteria-for-chronic-fatigue-syndrome

As an aside, Rituximub is a drug that depletes B-cells, and is used only under the most compelling circumstances -- usually certain blood cancers and/or some very severe diagnosed autoimmune disorders. It's such a high-risk drug that only a limited number of physicians can even have access to it. It carries a black-box warning due to the risk of developing progressive multifocal leukoencephalopathy (PML) -- a condition that is untreatable and fatal. I can't imagine it ever being considered for use in POIS.

Stef


demografx

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Re: Is POIS a version of CFS?
« Reply #4 on: February 15, 2016, 08:44:46 PM »
Thank you, mrraba.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

less_fogged

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Re: Is POIS a version of CFS?
« Reply #5 on: February 16, 2016, 10:05:10 AM »
I couldn't agree more with Stef. Movement helps me recover. It's obviously harder to exercise while in POIS, I usually go at a slower pace or with more pauses but I imagine to be clearing away what has been released into my body/blood stream after ejaculation. For whatever reason; ejaculation after sex, masturbation or spontaneous emission (wet or not).
I even think exercising soon after ejaculation helps all-in-all with clearing away symptoms making them less aggressive. It might add to the fatigue by the end of the day but simultaneously think it can partly help with sleep. For me being active late in the day can also be counterproductive for sleep though as there is then interruption with adrenaline. Time is needed for the body to re adapt after exercise/fast walking.

Note: For me during POIS to feel as good as I can during the day I usually need to stay longer in bed than normal though.

Mr Raba

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Re: Is POIS a version of CFS?
« Reply #6 on: February 16, 2016, 11:56:04 AM »
Can people with only POIS exercise extrenously for two consecutive days while under severe symptoms and if so what happens afterwards?

I understand that  when  with no symptoms POIS -only patients could feel almost normal. But how about while under the awful effects of O?  I am  referring to after extrenous aerobic exercise during a  POIS episode, not just movement.

Second. I am not suggesting that they are identical, but greatly overlapping. I have learned from both ilnesses for more than 20 years. The same systems are involved. Take a good look at CFS Research and you will get a huge de ja vu.  The look is to get insights on system involvement  and resulting symptoms so we can understand what systems cause what symptoms.

I have encountered the " not same disease, not worth a hard look"  response in the forum before. Yet year after year this forum patients "discovet" by trial an error the same things that people with CFS used for decades to alleviate Symptoms.  There are many nutritional approaches and supplemets that peple with CFS use that are worth taking a look (not just pharmaceuticals).

A very simple example: The low sugar, no gluten, no carbs, plus probiotics does wonders in CFS also due to microbione issues and keaky gut that kick up inflammation.  Been used in CFS since 1990s.

Just trying to alleviate suffering here,  it pains me to hear that for years this forum was unaware of so many strategists and supplements that were common  use among CFSers. As a reminder I have had both for 20 years and with the knowledge I have acquired  I am continually overcoming.  Also I think that both ilnesses are now close a cure from multiple fronts and approaches. It is coming....

😊👍🏾😊
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).  Some relief on day one and day two.  It affects neurotransmitters.

Quantum

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Re: Is POIS a version of CFS?
« Reply #7 on: February 16, 2016, 01:03:41 PM »
Hi Mrraba,

I suggest you simply write on this forum a description of what is working for you, like what supplements you take ( safe dosage, timing,..) and what POIS symptoms they relieve, and to what extent, what diet and other life habits are part of your current approach, and what % of success you have with this approach, and what symptoms are still resisting to anything you have tried so far.  This would be valuable information for this forum :)  Those who will be willing to safely try some of what you have done will be free to do so, after having checked with a health professional if this is indeed safe for them, and suitable for them considering their health conditions and their current medication.

Thanks!




You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

superfrancais

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Re: Is POIS a version of CFS?
« Reply #8 on: February 16, 2016, 01:37:19 PM »
Can people with only POIS exercise extrenously for two consecutive days while under severe symptoms and if so what happens afterwards?

I understand that  when  with no symptoms POIS -only patients could feel almost normal. But how about while under the awful effects of O?  I am  referring to after extrenous aerobic exercise during a  POIS episode, not just movement.

I believe (just my intuition, I have no clue) that POIS and CFS are rather different BUT...

I think you made a point in the above quote. As I am concerned I experience some relief with regards to joint/muscle pains when moving and doing sport (movement helps against inflammation I guess) BUT... if I push too hard when doing sport I have a hard time recovering. A very recent example : I played a tough two-hours tennis match two weeks ago and my body is still in the process of recovering. It could be caused by some seasonal virus but it's not the first time I experience this.

So I would say : movement is good against POIS inflammation but something in POIS prevents us from recovering from strong efforts.
20 years of both mental and physical symptoms after love, chronic fatigue and depression even with abstinence, French (Lyon)

demografx

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Re: Is POIS a version of CFS?
« Reply #9 on: March 06, 2016, 08:59:56 PM »

Just a periodic reminder to
please bookmark this site:
https://groups.google.com/forum/m/?hl=en#!forum/poiscenter

If you ever experience any unforeseen technical difficulties here!

It is our alternate/emergency POISCenter site at Google Groups.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business








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!