Author Topic: Pois is one of CSSs?  (Read 558 times)

Huser

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Pois is one of CSSs?
« on: July 11, 2022, 06:51:18 AM »
Hello,

my opinion is that POIS is one of central system sensitivity syndromes, like fibromialgia, chronic fatigue syndrome, regional pain syndrome and others...

Among Pois I have also simmilar problems as people with cfs and fibromialgia, but no desease totaly fit the description of my problems.

When I start reading I trigger my pelvic pain, like after orgasem. But when I read, I can also trigger problems in my arms and legs. I loose strenght in my arms. After orgasem that doesn't happen.

I have also orthostatic intolerance when sitting and restless legs, like people with cfs.

I AM NEVER TIRED! That is oposite to cfs...

My EEG is abnormal and shows sensibile brains.

So when I put everything together, I can see I have one of central system sensibility sindrome, that is not known and understood like all the others syndromes as cfs and fibromialgia.

Maybe CFS is problem of pituatary - hipothalamus hormonal axe and POIS is problem of pituatary - hipothalamus - gonadal hormonal axe. Or maybe just a somatic nervous system problem...

I think we will have lot of time to wait until someone will discover a medication for this syndromes...

Lihua

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Re: Pois is one of CSSs?
« Reply #1 on: July 11, 2022, 08:01:49 AM »
pelvic pain implies that maybe your urinary system has some problem, so it is a good choice to check it first. :)
all Chinese can send me a personal message, I have a wechat group. There are doctors researching POIS in Guangzhou, Beijing, Harbin.

Muon

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Re: Pois is one of CSSs?
« Reply #2 on: July 11, 2022, 08:33:57 AM »
A physical therapist thought I had central sensitization syndrome. I never paid much attention to it until last year. There are similarities in my case regarding trigger thresholds, overlap conditions, hypersensitivity to many things.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2750819/
"After administration of GABA or glycine receptor antagonists, for example, A? inputs are recruited to neurons in the superficial dorsal horn,17 and pain-like behavior can be elicited by movement of just a few hairs." 

Exercise: Exercise caused sneezing and runny nose in my left nostril. I also had exercise induced IBS with diarrhea, unusually long DOMS/recovery and chronic fatigue (5-8 days). I still can get fasciculation shortly after resistance exercise.

Sensory/scratching: Additionally, scratching my chin/beard on the left side of my face reproduces all the POIS symptoms that I would normally get from orgasm. I sometimes have a compulsion to scratch my beard when I am stressed or trying to concentrate on something or am sleep deprived. I've noticed that scratching and grooming hair on my face (head, eyebrow, beard) produces some affect that keeps me alert and helps me think when I am trying to figure something out (almost like caffeine). However, it is only when I repeatedly scratch my chin on the left side that I get really sick.

How about doing a Quantitative sensory testing (QST) study for POIS?
I could make a separate Central sensitization Syndrome treatment section here if you can find papers related to treatment: scholar.google.com
« Last Edit: July 11, 2022, 09:02:03 AM by Muon »

Huser

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Re: Pois is one of CSSs?
« Reply #3 on: July 11, 2022, 09:31:42 AM »
Lihua I had urinary system checked many times for 10 years, until I stoped seeing uroligist and went to neurologist where I proven, something is happening in my brain. Urologist never found anything.

Muon I will check for central sensitization syndrome treatment, but I am very slow, because I can't read. I am already feeling very bad today, because I wrote my thread.... 

Muon

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Re: Pois is one of CSSs?
« Reply #4 on: July 11, 2022, 05:22:27 PM »
https://www.dorsalhealth.com/blog/central-sensitization-causes-treatment#how-is-central-sensitization-diagnosed

"Quantitative sensory testing (QST) is another diagnostic approach for central sensitization."

My QST was abnormal. Here are my diagnoses after the QST:
  • Paresthesia of the skin
  • Segmental and somatic dysfunction of lumbar region
  • Segmental and somatic dysfunction of sacral region.




Basically, I have loss of sensation on my penis glans and on the left side of my penis shaft. My brain was unable to receive hot and cold temperatures from the tip of my penis, on both sides of my penis glans, and on the left side of my penis shaft. The sensation issue on my penis glans and the left side of my penis shaft does not seem to go away, even with abstinence.

Muon

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Re: Pois is one of CSSs?
« Reply #5 on: July 13, 2022, 05:24:41 PM »
Quoting from the book 'tuning the brain' written by Dr. J. Goldstein.

"Cannabinoids suppress central sensitization, a mechanism for chronic inflammatory pain. The endogenous cannabinoid anandamide is metabolized by fatty acid amidohydrolase. The action of the enzyme is blocked by nonsteroidal anti-inflammatory drugs (NSAIDs). If NSAIDs are effective in a neurosomatic patient, they may act by this mechanism."

"If excitatory inputs to the RTN are reduced (corticothalamic and collaterals from the ascending reticular activating system [ARAS]), the result will be large increases in receptive fields of thalamic neurons, a state that would worsen neurosomatic symptoms and increase central sensitization."

"IP3 increases intracellular Ca2+, and DAG activates PKC, which phosphorylates the NMDA receptor and removes the Mg2+ block. If this process can occur without first activating the AMPA receptor, the concomitant increase in SP and NR2B could produce depolarization and NMDA receptor-mediated events, including central sensitization."

"Other components of bee venom are serotonin (which is hyperalgesic), histamine, acetylcholine, and several kinins. There are also polypeptide toxins, such as melittin which damages cell membranes, mast cell degranulating protein, and apamin (a neurotoxin).
Tertiapin blocks muscarinic K+ channels. Enzymes include hyaluronidase, which helps the venom spread, and phospholipase A2, which is the major allergen. Many of these substances are arousal inducing, and most cause central sensitization."

"Diffusion of potentially algogenic transmitters may cause hyperalgesia and central sensitization in animals lacking (or perhaps with weakened)DNIC."

"Not only is the antihyperalgesic effect of GBP blocked by D-serine (and, therefore, cycloserine), but persistent activation of the NK1 receptor by SP removes the Mg2+ block of the NMDA-receptor channel (Urban L et al., 1994). This process contributes to postsynaptic central sensitization, as does a presynaptic hyperglutamatergic state."

"In addition to blocking Na+ channels, lidocaine inhibits the binding of SP to NK-1 receptors, altering central sensitization (TeradaHet al., 1999)."

"The patients may be more sensitive to potentially painful stimuli such as windup, increased pain sensation with each repetitive stimulus to a certain area (Staud R et al., 2001). Windup may be a manifestation of central sensitization of one or more wide dynamic range neurons as a result of long-term potentiation via NMDAreceptors (Gjerstad J et al., 2001). Neurosomatic patients often relapse after cognitive tasks."


Muon

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Re: Pois is one of CSSs?
« Reply #7 on: July 13, 2022, 05:58:50 PM »
Check this out: The neurobiology of central sensitization (Steven Harte, 2018)

"A recent term, Chronic Overlapping Pain Conditions (COPCs), has been coined by the NIH to indicate that FM, IBS, chronic fatigue syndrome (CFS), headache, interstitial cystitis/bladder pain syndrome, TMD, endometriosis, low back pain, and dry-eye disease may all represent conditions with overlapping clinical and pathophysiological features (i.e., those related to central sensitization), where central factors may be playing a prominent or exclusive role in their pathogenesis"

Chapter 2.7: "Although the prevailing view is that FM and related COPCs are not autoimmune disorders, and that classic anti-inflammatory agents are not of benefit in these conditions, there are some data suggesting that the immune system may be playing a role in their pathogenesis. Perhaps the most consistent finding noted to date is a mild elevation in IL-8, which is a cytokine associated with sympathetic function"

Check my lab data in my case thread. I know that IL-8 is being considered as a contender for a marker in FM but I didn't know it was associated with sympathetic function which I discussed here many times on the forum and in my case thread.

POIS patients with COPCs may have elevated IL-8 combined with sympathetic dysfunction. If this is the case we could define another subgroup of POIS (one other pattern/subgroup may be Lihua's case; thus low vit D+raised WBC in semen+response to certain Steroids and NSAIDS).
« Last Edit: July 13, 2022, 06:02:36 PM by Muon »

Lihua

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Re: Pois is one of CSSs?
« Reply #8 on: July 14, 2022, 06:14:36 AM »
Have you tested your prostate fluid and semen?Number of white blood cells, red blood cells, etc
all Chinese can send me a personal message, I have a wechat group. There are doctors researching POIS in Guangzhou, Beijing, Harbin.

Muon

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Re: Pois is one of CSSs?
« Reply #9 on: July 14, 2022, 06:29:54 AM »
POISers may be prone to changes of neural networks by repetitive stimuli. Memorization of stimuli may result in prolonged firing and/or amplification/numbing of signals the next time it will encounter the stimuli. These changes in neural network could interact with the immune system inducing additional inflammation (prolonged firing + immune interaction = prolonged inflammation?)

Check this, I think Dr J. Goldstein calls this a windup.
Another scenario:
Glans penis (limp state and is not sexual related) becomes sensitive while walking or riding a bike that I have to stop walking for a few mins or stop riding the bicycle (I stop because the sensitivity increases with duration of movement up to the point that it hurts). The little friction it makes with my clothing seems to get amplified after repetitive motion. It gets better once I pause. (very mild tingling involved)

Edit: Scroll up and check Nanna1’s quote again. The last sentence ‘repeatedly’. It could be the same dynamic as I described above in the quote of myself. In that case a wide spread type of neuron might be involved plus potential information processing and threshold issues. He also mentioned stress, which could amplify/prime this dynamic.

Have you tested your prostate fluid and semen?Number of white blood cells, red blood cells, etc
No, did your chinese doc run the same WBC semen test in other chinese patients?
« Last Edit: July 14, 2022, 07:33:25 AM by Muon »

Lihua

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Re: Pois is one of CSSs?
« Reply #10 on: July 14, 2022, 07:13:05 AM »
POISers may be prone to changes of neural networks by repetitive stimuli. Memorization of stimuli may result in prolonged firing and/or amplification/numbing of signals the next time it will encounter the stimuli. These changes in neural network could interact with the immune system inducing additional inflammation (prolonged firing + immune interaction = prolonged inflammation?)

Check this, I think Dr J. Goldstein calls this a windup.
Another scenario:
Glans penis (limp state and is not sexual related) becomes sensitive while walking or riding a bike that I have to stop walking for a few mins or stop riding the bicycle (I stop because the sensitivity increases with duration of movement up to the point that it hurts). The little friction it makes with my clothing seems to get amplified after repetitive motion. It gets better once I pause. (very mild tingling involved)

Have you tested your prostate fluid and semen?Number of white blood cells, red blood cells, etc
No, did your chinese doc run the same WBC semen test in other chinese patients?
A Chinese patient claimed that minocycline cured his symptoms of urinary tract infection, but did not cure his headache (but his headache often occurs, not necessarily triggered by ejaculation,he says his headache is not with brainfog). Due to the closure of the city, he did not go to the hospital to measure the prostate fluid, but he planned to do it in the future. He ate minocycline for ten days, and then ejaculated twice. After the first ejaculation, he had no symptoms and was completely normal. After the second ejaculation, he had a headache. Then is another Chinese patient, after another Chinese patient described his symptoms of frequent urination and endless urination to the doctor, the doctor gave him the same prescription as me without testing, because the doctor thought it was unnecessary.
all Chinese can send me a personal message, I have a wechat group. There are doctors researching POIS in Guangzhou, Beijing, Harbin.

Muon

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Re: Pois is one of CSSs?
« Reply #11 on: July 14, 2022, 07:31:17 AM »
https://en.wikipedia.org/wiki/Minocycline#Infections
S. Aureus can induce IL-8. The other medical uses of this med are interesting as well. We are going off-topic now.

Lihua

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Re: Pois is one of CSSs?
« Reply #12 on: July 14, 2022, 11:29:25 PM »
https://en.wikipedia.org/wiki/Minocycline#Infections
S. Aureus can induce IL-8. The other medical uses of this med are interesting as well. We are going off-topic now.
He ate minocycline for ten days and ejaculated for the first time after 14 days (This means that 14 days have passed since the last minocycline administration), so his normal state should be due to the bactericidal effect of minocycline rather than other effects
all Chinese can send me a personal message, I have a wechat group. There are doctors researching POIS in Guangzhou, Beijing, Harbin.

Huser

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Re: Pois is one of CSSs?
« Reply #13 on: July 16, 2022, 09:15:59 AM »
I really bealive that semen has nothing to do with POIS. I had normal POIS, never worying to much, than I tried Mirapexin 3 years ago and tha same symptomes apeard as with orgasem. They become much worse and painfull, they lasted few months and made my POIS worse. I was also unable to read, because reading triggerd very bad symptomes. I stoped having sex for two years, and my Pois is now so better I have only slight pain after orgasem lasting one day. But I never stoped reading, because I have to read in my job and everywhere else. So this trigger "the reading" is still very painfull and making me big truble. I can loose strenght in arms and legs if I read to much, I can get pain so strong in my groin that I can't do anything. Orgasem is not a big problem for me anymore, its reading! And I can't se the conection between semen and reading... I had checked my semen and everything is OK.

I think, that the real problems are sensitive brains. But why are brains sensitive? Everything started when I injured my right testicle when I was 16. Some people get regional pain syndrome when injured...

demografx

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Re: Pois is one of CSSs?
« Reply #14 on: July 16, 2022, 02:13:38 PM »

I really believe that semen has nothing to do with POIS.


Interesting! I believe just the opposite :)
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

Huser

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Re: Pois is one of CSSs?
« Reply #15 on: July 16, 2022, 02:46:40 PM »
And I also bealive that POIS is not just one desiese. I think different desieses trigger simptomes after orgasem. Orgasem can trigger epileptic seizure, rarely but it does. Brushing your teath can trigger chronic fatigue sindrome. Why can't orgasem trigger chronic fatigue sindrome? Lights can trigger epileptic seizure and chronic fatigue sindrome. Medications can trigger alergies, chronic fatigue sindrome, fibromialgia, peripher neuropathy,...so maybe semen can trigger also all this things. But I am almost shure that semen doesn't trigger my problems. If it does, why am I having problems after 2 year of not having an orgasm??? And why is reading making my simptomes so bad I can't live normal, and orgasem has become practicaly non problematic...

hurray

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Re: Pois is one of CSSs?
« Reply #16 on: July 17, 2022, 05:37:00 PM »
And I also bealive that POIS is not just one desiese. I think different desieses trigger simptomes after orgasem. Orgasem can trigger epileptic seizure, rarely but it does. Brushing your teath can trigger chronic fatigue sindrome. Why can't orgasem trigger chronic fatigue sindrome? Lights can trigger epileptic seizure and chronic fatigue sindrome. Medications can trigger alergies, chronic fatigue sindrome, fibromialgia, peripher neuropathy,...so maybe semen can trigger also all this things. But I am almost shure that semen doesn't trigger my problems. If it does, why am I having problems after 2 year of not having an orgasm??? And why is reading making my simptomes so bad I can't live normal, and orgasem has become practicaly non problematic...

You make a very good point.

I agree that POIS isn't just one disease. In my opinion, POIS is a very wide range of symptoms. The key thing that links everybody here is that the POIS symptoms are triggered by sexual activity/orgasm, and that they disappear after a period of time.

I can get POIS symptoms from "morning wood" that can ruin a whole day for me (mostly brain fog). I can trigger a similar effect by washing my head with hot water for an extended period of time, but I would not classify that as POIS.

The problem is that if we expand the scope of "POIS symptoms" beyond sexual activity/orgasm on this forum, we're just a random group of people on the internet complaining about our various ailments and illnesses.

This is absolutely not intended to be a criticism of you, you've raised a really important issue. In your case, taking Mirapexin and abstaining from sex for 2 years seem to have caused an entirely different trigger for what you identify as POIS symptoms from your previous POIS problems.

hurray

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Re: Pois is one of CSSs?
« Reply #17 on: July 17, 2022, 06:22:17 PM »
Some people who are susceptible to POIS may very well have "sensitive brains" as you said in your previous post, and something other than semen/orgasm may well trigger POIS-like symptoms for them. In my case, I probably have some kind of norepinephrine dysfunction (since milnacipran works for me).

Many people on this forum have reported having POIS symptoms from non-sexual causes, myself included. To keep things clear, we should probably refer to these symptoms as "POIS-like" or similar. After all, POIS stands for "Post Orgasmic Illness Syndrome".

https://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

Do other forum members agree? Or should we be trying to expand the meaning of POIS to include other POIS-like symptoms?

demografx

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Re: Pois is one of CSSs?
« Reply #18 on: July 17, 2022, 07:31:55 PM »


…POIS stands for "Post Orgasmic Illness Syndrome".


Exactly what I wanted to post.
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

Huser

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Re: Pois is one of CSSs?
« Reply #19 on: July 19, 2022, 12:48:57 AM »
Then I have a question for you. If someone gets epileptic seizure after watching into the flashing lights. He has epilepsy. If someone gets epileptic seizure after orgasem, he has POIS or epillepsy?