[Finally]

I somehow found this forum.  I began masturbating at about 14. I didn't have lot of privacy so it wasn't that often. I noticed weakness that I couldn't explain.  At about 18 my neck began getting stiff. After a while I realized the connection. at first I thought it was a temporary condition so I stopped. It got a little better but not completely as after a while the wet dreams set you back. You get frustrated and figure you may as well prevent it and at least be awake to enjoy it. Soon it was my neck, back, shoulder and then somewhat the whole body. You try and after a while the desire goes away but in one night you get thrown back. Stimulation does it to a small degree but the orgasm really starts it. I get hot especially around the neck and ears burn. Also swelling in the underarm area. The first 24 hours are the worst.  Eyes will also feel irritated dry.  I feel dehydrated. It will worsen for a very predictable 24 hours reaching a peak and gradually start to get better.  7 days is about when it seems to get better although for the muscles to compel relax would takes months to a year. I've never got that far. It is like an arthritic condition. I also had stiffness in the shoulder after consuming alcohol.
I went to doctors. They gave me muscle relaxers etc. One sent me to physical therapy.  May have helped a little except it included getting a massage by young female PT assistants.
At 26 I went to a urologist who checked for diabetes and said "don't worry about"
Pretty much a dead end.
I did tests for Dhea and Testosterone after but they came back normal'
I tried different supplements which seem to help with the recovery.  Mega dose of vitamins particularly C and E.
Also has a little success with a combination of Probiotics and Enzyme formulas for muscles and digestion(bromelain, protease, papain)
I got prescribed antidepressants. Nortrip made me feel like my head would explode. 
a couple of observation
- when I had wet dreams I realized that there was a connection between taking Aspirin , Ibuprofen etc too close to bedtime.  After stopping them after 4:00 PM that really helped.
-Taking salt right after an orgasm seems to leesen the immediate symptoms. It has become difficult o find salt tablets so I just use a shaker and a glass of water.  I do become very thirsty. 
-Ice or a cold Shower/bath/swim helps some.
-As much as I want to lie there exhausted it helps to exercise particularly anything to stretch the body although it feels like my spine has been replaced by a steel pole.
-there is also numbness in areas.
-My father's family had a history of MS.
-I've had a little mental fogginess but am not sure if it was from the medicines.  I dropped out of college once after going blank during some exams. No one told me the side effect.
I am now 50.

[demografx]

FINALLY, welcome to the POIS Forum, I'm glad you found us. And thanks for not giving up. I, too, have over 30 years experience with the agony of POIS. If you review some recent posts you will find some very encouraging successes. I hope yours becomes one of them.

[Counterpoints]

There was no reaction at all to the questionnaire being posted, after sooo much work. And only one person has even filled it out.  This is the key to getting help -- to getting researchers' attention.  I had planned on bringing some of the forms to some research physician friends, but I can't do that if there is nothing to show.

If you are currently testing a treatment, and are worried you won't get a chance to write about it, that isn't the case.  We will have another opportunity in a few months.  And if you urgently want to add something, we will include it in whatever is put together to present.

The website again is: pois.olympe-network.com

Cheers.


edit: It may help physicians if you use the same name when filling out the form as you have on these forums -- that way your responses can be matched up with some of your postings here.

[John21 (OP)]

Counterpoints, I will get to it this week.

Has anyone heard of the "spit test" for Candida? What do you think, is this something that most people fail, invented to fool people into thinking they are infected, or is it legit? I tried it this morning, results were positive.

http://www.1stcandidacure.com/candidatest.html

[girlwind]

There was no reaction at all to the questionnaire being posted, after sooo much work. And only one person has even filled it out.  This is the key to getting help -- to getting researchers' attention.  I had planned on bringing some of the forms to some research physician friends, but I can't do that if there is nothing to show.

If you are currently testing a treatment, and are worried you won't get a chance to write about it, that isn't the case.  We will have another opportunity in a few months.  And if you urgently want to add something, we will include it in whatever is put together to present.

The website again is: pois.olympe-network.com

Cheers.

Counterpoints, I am very grateful for the work that you put in to make the questionnaire happen. THANK YOU! I have every
intention of filling it out, but was waiting to finish and get results from some relevant lab work. I am currently in the process of
testing all my hormones and wanted to get the results before I did the form. Can it wait another week? And also, can I use my
nakedscientists email? Will that work as a contact for the researchers?

[Finally]

B.Jim
Definitely 48 and probably 24. Next day anyway. It was a saliva mail in so I don't not how accurate or well handled it was. A blood test might be better.

[demografx]

Counterpoints, will our information be provided to any other public website, POIS-related or otherwise? Thanks for all your work.

[aloha]

Hi,

I'm new to this forum. I'm female and experiencing similar symptoms. What baffles me is the fact that these symptoms usually get called post-traumatic stress disorder, flashback or dissociation when you have them as a woman. So I'm wondering- do men and women exprience the same thing? Is it due to trauma or a physical problem, or what?
I don't know if anyone has brought up this aspect before, and I don't feel quite comfortable to adress this, but it's just too strange.

Aloha

[Finally]

Did you test cortisol too ?

No.  Not sure if that was available.

[demografx]

Aloha, welcome to the POIS Forum. Glad to have you here.

[girlwind]

Hi,

I'm new to this forum. I'm female and experiencing similar symptoms. What baffles me is the fact that these symptoms usually get called post-traumatic stress disorder, flashback or dissociation when you have them as a woman. So I'm wondering- do men and women exprience the same thing? Is it due to trauma or a physical problem, or what?
I don't know if anyone has brought up this aspect before, and I don't feel quite comfortable to adress this, but it's just too strange.

Aloha

ALOHA, back to you!  Yahoo-ee, finally ANOTHER WOMAN!   [] [] [] We are a rarity here. Only one other woman that I know of
has passed through this forum, and I'm the only one who has stuck around. It's a remarkably bright and determined group of people,
who are VERY SERIOUS about finding answers to this baffling malady. Please check out the video posting that I made for youtube.
It might answer some of the questions that you have about POIS. 

I didn't address your question about trauma in my video, because as I read through the postings on this forum to write up the script
for the youtube film, I didn't find trauma to be a consistent issue with those of us who have POIS. Some of us have been sexually
or physically traumatized/abused as children, and some of us haven't. But as a whole, we seem to be leaning towards the problem
being more of a physical one, than a psychological one, though no one is sure WHAT exactly causes it, or WHAT definitively cures it.
No one thing has worked for everyone, but some people have had results/relief/ in managing or even curing their symptoms with a
very wide variety of different remedies--all the way from garlic to Levitra.

It really is TOO STRANGE!

[prosodye]

Hello, I have started a thread about POIS, candida, hypoadrenia, and raw diet here newbielink:http://www.giveittomeraw.com/forum/topic/show?id=1407416%3ATopic%3A425675&page=2&commentId=1407416%3AComment%3A426201&x=1#1407416Comment426201 [nonactive]
please feel free if you would like to post any comment.

[Counterpoints]

Thanks for your responses.  There is no huge rush to fill this out.  Taking another week or even a month shouldn't affect things too much.  I just wanted to make sure people were aware of this form, and wanted to point out that there will be opportunities to add information in the future.

You can use any e-mail you'd like in the form.  Suggestions have just been made to protect your anonymity. 

Demografx:  When you complete the form, you are given a link that allows you to see other people's responses.  Anyone who sees these responses could post them somewhere. 
You should keep in mind the information you write in the form is not private, much like what we post on this thread here.  If there is important information you don't want to disclose, perhaps explain that you feel you have a relevant response but are not comfortable disclosing it.

[demografx]

Many thanks, Counterpoints, for your great service!

[demografx]

I finally told my younger son about POIS (and that I have it).

His immediate reaction was that it is "psychosomatic". My early upbringing was with religious teachers who taught that sex is "dirty", so he has a point.

I insisted that POIS is not psychosomatic, but I was weak in defending that. To me, it really is just my best educated guess after 30 suffering years plus the wonderful journey with you all here.

ANY IDEAS TO EXPLAIN WHY POIS IS NOT PSYCHOSOMATIC?

Thanks!

[girlwind]

I finally told my younger son about POIS (and that I have it).

His immediate reaction was that it is "psychosomatic". My early upbringing was with religious teachers who taught that sex is "dirty", so he has a point.

I insisted that POIS is not psychosomatic, but I was weak in defending that. To me, it really is just my best educated guess after 30 suffering years plus the wonderful journey with you all here.

ANY IDEAS TO EXPLAIN WHY POIS IS NOT PSYCHOSOMATIC?

Thanks!

HELLO DEMOGRAFX   I've been through this kind of thing SO MANY TIMES with so many people (having CFS for 30 years,
as well as POIS), and at this point I don't think there is a way to convince skeptics that these kinds of "invisible illnesses" are not
psychosomatic. What I've seen is that people come to their conclusions based not on facts or convincing arguments, but rather
on their personal experiences. So if they have not had the misfortune to suffer symptoms of the same malady as you have, then
they will be probably just NOT GET IT. 

Unfortunately, the scientific community is full of people like this, and that's why we (with POIS) are in the predicament we're in.
You don't have to look too far back in history to see all the mis-judgements that were made by great scientific skeptics who once
reduced now "legitimate" illnesses to the back burner of the psychosomatic. Not very long ago, peptic ulcers were officially diag-
nosed as the disease of the neurotic worry-wart. Now we know that there is in fact a virus (the h. pylori virus) responsible for that
condition. And what about all the children with lead poisoning who were misdiagnosed as "slow."  Before that there was all the TB
patients who were sent off to have their "long rest" in the isolation of the sanatoriums, until they FINALLY got around to discovering
the mycobacteria that causes tuberculosis. Back a little farther there were the women with multiple sclerosis who were misdiagnosed
with the mental disease of "hysteria."  I won't even begin to rant about CFS, and how long it's taken for recognition of that to happen.
There are still so many doctors who see CFS as a psychosomatic creation.

My best argument for you would be that "not everyone who thinks that sh1t is stinky, has constipation."   []

[John21 (OP)]

Thinking POIS is psychosomatic is a logical conclusion for anyone who hasn't experienced it, the problem is unimaginable to them. How to explain it? Good luck!  []

As Girlwind explained, history is full of misunderstood conditions that came to light over time....and it ain't over yet.

[Counterpoints]

It's possible that POIS is psychosomatic; "the mind is it's own place and can make a hell of heaven or a heaven of hell".  But it's annoying to be labeled with a psychosomatic illness by someone who barely understands your situation.  Many people won't even consider the possibility that something isn't psychosomatic.  There's just this aggressive insistence that it's all in your mind. 

This makes it hard to accept.  It's also possible that there are traditionally non-psychological  issues closely intertwined with psychosomatic symptoms.  This makes it difficult to diagnose and treat the problem, sometimes causing the whole thing to be labeled as psychological.

I think it's good to keep an open mind to all reasonable possibilities, and give them a fair hearing.  For some of us, POIS may be psychosomatic.  At the same time, I would like us to be given  a fair hearing.

[demografx]

Thanks, girlwind, that was enlightening with a lightening (up) ending! (almost like a Chinese proverb). Friend of the family has CFS, and she's suffered the same for years and years, even with a family-physician GP for a father who doesn't get it!

[demografx]

John21, and Counterpoints, thank you very much for shedding more light on the psychosomatic.

I'm embarrassed to say that my prejudice comes from the fact that if it were psychosomatic (which I used to believe exclusively), then I - with all my considerable willpower, strength, intelligence, etc. - can't bear to admit that I have been unable to unravel my POIS - in fact not even make a dent! -  after 30 years of strenuous effort, including psych meds, over-the-top exercise, and marathon talk therapy! In addition, I  endlessly chased numerous "spiritual" paths and practitioners...to no avail. So....if the Great Unlicensed Doctor (me) couldn't cure my own POIS with a frontal attack on anything psychological/spiritual, "how could it be psychosomatic"? Make sense?

As Counterpoints states, we should be open to any and all possibilities of POIS development and cure. At this stage, I'll even consider aliens from UFO's having conducted wild experiments on us pre-natally with a cure of Kryptonite!