One of the things that is new to me these past months is that I get very vivid nightmares almost every night. I tend to wake up very tired.
Btw, when I say “these past months” I mean exactly since the day I last crashed.
Sorry to hear that Kan.
I hope that resolves for you very soon. If the nightmares are a PFS symptom, who would have thought they were even possibly a side effect!
I hope you get a good day very soon
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Stay strong mate. Dealing with ups and downs here.
I am struggling with adjusting a diet since food is a major trigger on sleep and its quality and overall tiredness…
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If one day I have to take the car and attend different meetings, then I’ll get 3-4 days of quite horrible muscle pain and fatigue. Right now my arms and legs ache so much…
In the past I had some hopes of qualifying for disability if things got bad (as bad as they are now) because a doctor diagnosed me with chronic fatigue syndrome. But since a nice psychiatrist diagnosed me with delusional disorder some months ago, things will be more complicated if I try to get disability benefits.
My relationship with my parents is not good since they put me in the psychiatric hospital and crashed, but this means that I have to force myself to work at least to get the minimum necessary money, as asking them for help would imply a new humiliation or nasty comments from them.
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Hey @kan > PM
Typically the case where a chat function would be useful :D.
These posts totally justifies a quick access to the OP!
I know you are a grown up person and i don’t want to say anything about your familys attitude. But thats sucks man, they probably think you are making this condition up in your mind right? Jesus christ. You should seriously talk to them and show this forum or something. Wish you the best. Btw do you smoke medical marijuana? A nice indica strain may help with you with those pains…
Last Wednesday I did a blood test.I asked to measure CK in the blood test too, despite the skepticism of the doctor, who thinks measuring CK is not reliable. Next Wednesday I’ll have the results.
I have also an appointment tomorrow to check if I have pudendal neuralgia. I’ll have an EMG and a neurography at the area of the sphincter muscles.
Regarding denervation, I guess in case of muscle atrophy in the sphincter area, the EMG would also reveal this if this was the case? Anyone has done some research on this?
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Creatine kinase was within the ranges. I don’t know if this is good news, I am starting to think that part of our problems may be psychogenic. There is no doubt about my body changes, but can this be caused by my mind?
I don’t know, these last months I have changed my mind many times on what I think PFS may be. I wish I could go back to before my last crash, I was happy not caring too much about PFS.
Others with muscle loss have reported the same:
I did the test three days after having my last orgasm, which is when I feel that I have some trouble with muscles (from the day of the orgasm until 2-3 days later). Maybe in the future I’ll do the test again closer to the moment of the orgasm.
I don’t know. The only test I have that proves damage is a penile doppler that shows artherosclerosis, fibrosis, etc. And this started at the moment my penis went hard-flaccid, a syndrome which now I have read is mainly caused by stress.
Also, most people in this forum haven’t got any test showing any kind of damage, apart from some annecdotical test like my penile doppler (some people on this forum have done this doppler and came back normal for them). I understand that if the problem is in the AR, then it is normal that we have problems even with our Testosterone levels being normal. But shouldn’t some tests show the damage that this could be causing in some areas of the body?
For example, many people have had problems like eye pain, extreme eye floaters, vision problems, etc. But when they go to the ophtalmologist the answer is always the same: your eyes are fine. I have read that eye problems that cannot be proven are one of the first signs of a psychogenic illness. Also I feel like we are trying to make strange maneuvers to connect some of the strange symptoms some people have with the main theory.
I don’t know, I am having a week in which I feel a little bit lost, and even though I am playing a little bit the devil’s advocate in this last post, I must admit that for the first time in 8 years I am starting to have some doubts about some things.
Anyway, I have postponed my perineal EMG until next Tuesday.
Edit: I forgot to update that my horrible brand new restless leg syndrome that started after taking one pill of olanzapine has gotten worse and nights are being “fun” before falling asleep. Many studies talk about this syndrome being caused or aggravated by antipsychotics (such as olanzapine) and other drugs that block dopamine receptors.
Kan, after the EMG evaluation maybe consider trying Magnesium L Threonate (MagTein formula). I do have experiences with RLS and this compound is best among any Mg that there are and also has other advantages like getting Mg through BBB that You will simply wouldnt get from other Mgs. Start low and slow and build dose to desired effect and give it some time. I wish You luck and to get better soon
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The results of the perineal emg found partial denervation (I dont know if I am doing the translation well, but I think it’s this in english).
The doctor who did the test says the causes can be multiple, but need to talk to the doctor who ordered the test.
I am having nerve pains and paresthesias in different areas since I did the electromyogram. It also happened when I had x-rays three years ago.
Hi @Kan,
It’s inappropriate to suggest others’ symptoms are psychosomatic. I don’t know why you appear to be gaslighting yourself but I have seen you are now already heading for another rabbit hole in another topic:
You didn’t even know you had this until a test I specifically recommended to you in this thread. The chain of events above is as follows.
Then you appeared to suggest the problems of others were psychosomatic.
You are not familiar with the medical findings of others and the test you pursued per my suggestion revealed moderate denervation.
I have no idea what you meant by this and I don’t know what these strange manoeuvres are or who “we” are in this context. A cursory look at this forum would probably suggest to an outside observer the “main theory” is to do with an imaginary bacteria or metals. There is no “main theory” in the minds of patients, at this point there’s probably more “theories” than registered users, and barely any take account of the real situation or clinical picture in the first place. If you mean the view of the administrators, we haven’t shared our recent efforts with forum members so I don’t see how anyone is connecting anything to it. I suppose that EMG was a very lucky guess, considering I don’t see this being discussed in patient groupings. Or, maybe it wasn’t.
I suggest instead of worrying about theories, or trying to form another based on this result, you focus on looking after yourself. A few members have said they were upset at you suggesting their symptoms were psychogenic considering the extent of their symptoms, especially when you consider yourself severely affected. You were quite upset above when a user suggested your own problems were caused by your own lifestyle, so please consider how others might feel reading you say that considering the devastating effect this has had on many users who are profoundly affected. @Tzinkman wrote of this here.
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I suggest instead of worrying about theories, or trying to form another based on this result, you focus on looking after yourself.
The endless loop of BS theories on our site is like a brake on escaping this mess. It is like a stuck record going on for a decade, looping endlessly, with no gains. If people here spent as much time on supporting our projects as regurgitating “theories” over and over, we would be a lot closer to winning.
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I am quite surprised by the tone of this response @axolotl. I have always been extremely respectful with everyone during the 8 years I have been part of this forum. I understand that we all are going through a tough time, but I think you are overanalyzing some of my comments.
There are many theories on this forum, and many of them make no sense at all. As I said many times, the only one that makes some sense is the AR theory (that’s why I have been donating to the foundation in the past, and that’s why I have explained all these theory to the journalists who interviewed me three years ago on TV3), but it is also true that part of our problems could have other explanations (or no, I think that most of us should use more the words “I don’t know” and see what evidence do we have to prove each theory). When I talk about other explanations, I am not talking about Candida, I am not talking about prostatitis, etc. I am only talking about those possibilities that have some evidence.
During the last months I have been talking with doctors and researchers, and they have provided some information, that one does not need to agree with, but I think it also needs to be beared in mind. As I said in another post, we (when I say we I mean people, or people like me, not anyone in particular) tend to search information with a cognitive biass (for more information: https://en.wikipedia.org/wiki/Cognitive_bias)
During 7 years I totally discarded that my penile shrinkage and hard-flaccid symptoms could be caused by a stress reaction, but one of the doctors I am talking with has been providing some information that has made me think that yes, there are many cases of shrinkage in which stress can play a key role. I obviously respect the opinion of someone who has studied medicine for 6 years and has many other years of practice. Obviously some doctors don’t even know what they are talking about when they mention PFS, but I respect those who thake their time to analyze the situation and share their opinion based on their knowledge.
Here’s a small article about it if anyone wants to read it:
Within the body, psychological stress triggers the release of adrenalin with a primitive fight or flight response. The body goes into high alert; blood is directed away from certain visceral organs like the stomach to the muscles of the limbs and pelvis, so danger can be avoided.
One of the biological theories proposed to explain the relationship between stress and the development of hard flaccid syndrome is as follows:
- Initial stress, be it physical or psychological, triggers an abnormal fight or flight response resulting in increased sympathetic stimulation to the muscles of the pelvis via the perineal branch of the pudendal nerve.
- A surge of adrenaline, noradrenaline and cortisol is released from the afferent nerve fibres promoting increased blood flow to the bulbospongiosus, ischiocavernous muscle and levator ani muscles as well as sustained muscle contraction.
- Sustained contraction of the ischiocavernosus and bulbocavernosus muscle results in obstructed venous outflow from the penis via compression of the deep dorsal vein. This process is likely to be responsible for the semi-engorged penis in the flaccid state.
- Prolonged contraction of the muscles results in pelvic myoneuropathy secondary to neurogenic inflammation.
#> ### Clinical features
Patients usually seek medical advice because of the following symptoms:
- Penile and perineal pain. This is most severe in the standing position, less so in the sitting position and absent when supine. The pain regresses when urinating.
- Patients report shortening of the penis associated with a constant cramp / clenching sensation in the pelvis.
- Penile sensory changes can be reported with the penis feeling numb to touch.
- Erectile dysfunction. There can be loss of morning and nocturnal erections. Excessive physical stimulation is often required to obtain an erection, in addition to visual stimulus or cognitive thought. The glans can remain flaccid during erection.
- Pain on ejaculation and urination with a reduction in urinary flow.
Does this mean that my shrinkage is caused by stress? No it doesn’t. But now I know that there is a small possibility of stress playing a role in such damage (not necessarily explaining everything). And after some years I have reached the conclusion that I prefer to have as much information as possible. I would walk out of doctors offices in the past without even discussing with them, now I prefer to debate and listen.
I don’t know why you mention this, an EMG is something that has been suggested through the years by some doctors, and the reason one of them asked me to do an EMG of the perineal area is because I asked her to test if I had perineal neuropathy. After this, one of the options she is talking about is that it can be due to nerve entrapment. What I have been saying in some of my posts is largely based on listening to her.
I obviously believe that there is much more to this that what doctors are saying , but we need to listen to people who think different than us, especially if a doctor is giving me some evidence.
By the way, I want to make clear that I am totally discarding this thing being a delusion (as well as my doctors), the proof of physical changes is there. The only thing I am saying is that every logical possibility needs to be taken in mind. For example the reason I believe that hard-flaccid can be caused by stress and not by candida, is because I have had a doctor showing me some respectable information about the first of this two options, I have never seen any evidence on candida causing shrinkage.
I see you are quoting me on the day that I had the test about CK. Two things about this: 1.On that day I was very very low, and I agree that was not my best post -probably it was the most impulsive post I’ve written- 2. Searchin every word one has said and then remember him about every single word is something that I don’t agree with, it was done in the past to discredit some of the administrators by some of the most controversial users, and it never ended well, it only brought crossed accusations. I think you have done a good job in improving the outlook and ways in this forum (creating a coping section, talking about caring about others) and I can tell you I much prefer this ways.
What I do say again is that there is a high possibility that part of our problems are brain related problems. I find very interesting what Melcangi has been publishing. You disagree with some of the things he has done, and I respect that you do so, Melcangi is not a messiah and I won’t question your opinion, which is totally fair.
I had a terrible day on that day when I measured my CK, we all have some bad days and bad posts. For example I disagree with some of your recent posts: I totally disagreed with you when you banned for a day a guy who on that same day was talking about contemplating suicide. You also said to him that he was doing “x-box research”, which in my opinion is very irrespectful. He said some things that had no evidence to proof them, but there was no need to insult him.
I aso disagree with your statement that being at propeciahelp is a privilege rather than a right. I understand things differently. For years, this has been a home for people who are suffering A LOT, and yes suffering means that sometimes these people may say some things that are quite questionable, but this is the only place where many of these people can talk about these problems. In my opinion, a ban to a member of this group should only take place by this person lying (e.g. solonjk), insulting other people, or asking people to try dangerous treatments.
Even though I totally disagreed with you I didn’t thought of answering you in a bad tone and quoting every word you said, and searching some old posts. I just respected your opinion, as well as I respect you, and maybe I would have sent you a pm with my opinion on this regard, but nothing else.
I never say that I know for sure something (as some others have been doing, especially in strange theories).
I have not referred in any way to the administrators of this group, if I would have wanted to do that, I would have said “the administrators of this group”. If you see many of the posts that have been posted through the years, especially by users that come and go, you’ll quickly understand what I mean by “making strange maneuvers to connect symptoms to the theories that have been most discussed”.
I have nothing but respect and empathy for the administrators of this group. During many years I have sent private messages to awor (probably since 2011) because I totally respect him and he has given more than enough proof of knowing what he is talking about. He is the reason for me to have given money to the foundation through the years (and will do again soon as I have started a new job despite my difficult situation). I can also say I love the way Philip has quickly answered all my questions and has supported me when I was at my worst.
I also think you are doing a great job @axolotl, though, as I said, these last weeks I don’t agree with some of your posts, but I totally consider you a brother, because I know that you are going through a lot too.
I am sorry, but I can’t accept this one. People have own mouths and keyboards they can message me whenever they want. I haven’t received a single message of any member of this forum saying what you are saying, not even an anser post. The sentence “a few members have said they were upset at you” is quite unacceptable, I understand that you are giving your opinion, but people are adults, and there is no need to speak on their behalf.
The only post I have seen on this regard is the one by @Tzinkman, which I wanted to reply but I ended up not replying. He quotes a study about PFS being a possible delusional disorder which I totally disagree with. As I said, I have no doubt that PFS is not a delusional disorder.
Also I found the following statement quit hypocritical:
I don’t agree with someone questioning the way others talk about possible explanations, and immediately saying “I state it UNEQUIVOCALLY AND WITHOUT DOUBT there is absolutely no component to my symptomology whatsowever” (because I know it and that’s it!). The fact that someone has severe symptomps doesn’t mean that there is not a possibility that some of them are being psychosomathic.
I totally disagree with that statement: It may be true that there is no psychological component, but claiming he knows for sure is doing the same mistake he is saying about others.
Also, I just remembered that when I talked about my shrinkage starting when I took ritalin, one member (@DHT) told me that the anxiety while taking ritalin could have played a role. I immediately thought that he was crazy (and I answered him that I didn’t believe it was possible). But looking at the past, I probably should have answered him “thanks for your input, even though I find it strange I’ll look into it” or something like that.
Finally, I need to say that I have been a proud member of this forum for 8 years, I love each and every person in this forum and the ones that have left us. I have tried to help people especially when they where feeling extremely suicidal. I understand that it’s inevitable that there is strong discussion every now and then between some of the members (though I have never taken part in any of them), because it is obvious that when people are going through tough times these things are more likely to happen.
I think I have always been respectful, and will try to be respectful also in the future. Obviously I will try to make everyone feel comfortable, and if some of the things I have said make you feel uncomfortable, I will try to say them in the better possible way (if you feel that something needs to be changed, you can always pm, and I will have no problem).
I love you all boys, we are in the same fight. I really hope the Baylor study brings us some clues, and be sure that even if it doesn’t make the picture more precise, I will always support the PFS fundation.
I hope we can one day celebrate our victory together.
P.S. This is a long text, sorry for my English,
By the way, I am taking a couple of days days off the forum, I am not a fan of big arguments. I think each and everyone of us is going through a lot, and having started a job recently I need a very peaceful mind to try to stay focused these weeks. I love you all.
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Your post is off on several tangents unrelated to either of our posts, and I think the volume of text suggests the reverse in terms of overanalysing, and would agree a break is always a good idea. I understand we all have bad days and that this was the case when you posted it. I did not know what or who you meant, so I didn’t know who you were referring to as I said, but you have misquoted yourself in this reply and I can only interpret what is written.
Psychogenic or psychosomatic, which I am unsure if you are aware, is implicit of no physiologically aberrant findings having been identified and thus the causal factor being psychological or emotional stress. This is demonstrably inappropriate to PFS in which not only has clear molecular level findings reported in literature and many clinical findings relevant to the mechanistic action of the drug by patients - you included - but the trigger is use of a 4-azasteroid, not emotional stress. I see it is inappropriate and counter-productive. I did not warn you about anything in terms of the rules or moderation, so I don’t feel that considerable aside is relevant at all. I’m also entitled to respond to posts, as is everyone. I do believe there’s an interesting point of discussion in there, perhaps with what you alluded to about another condition, but that wasn’t really anywhere to be found in the post you made.
Let’s just put it down to a coincidence then, considering you said you’d request it as soon as possible after I enquired about it specifically.
I feel it’s important I clear this up. This is a privately owned forum, not a country of which the members are citizens. This is a worrying misconception. That this is a privilege and not a right is not a matter of opinion. This site is funded and provided by the administrators and is wholly dependent on us and secondarily the effort of the moderators. Members are invited to use it in line with the terms of service.
The user you mention sent private profane abuse after being reminded of the rules because he would not stop insisting on having worked it all out and then attempted to solicit money which is not permitted for any reason. Two other moderators had spent significant time with him trying to get him to read the rules and behave appropriately before I intervened. Whether a user declares himself suicidal or not is not our responsibility and does not excuse him from the terms everyone else abides by - many of whom aren’t in good shape either, I can assure you. Although we do take into account irrational behaviour given the situation, the effort the moderator team put in to this issue precludes wasting our time endlessly with people who are not willing to behave by very, very simple terms in exchange for use of the site, or will subject us to abuse. The terms are extremely clear and, after repeated fair warnings, users can either abide by them and use this site or they can not.
I don’t think it’s fair to frame this as an argument put upon you by saying you don’t like arguments. You have plainly just veered into a huge wall of text full of disagreements, many of which are completely out of the blue and unrelated to the discussion such as moderation. In terms of what was already here before that long post, I believe it’s quite obvious the suggestion you made was controversial and could be seen as inappropriate to patients (which I found it). I therefore would expect you would know it wouldn’t be met with universal acclaim from severely affected patients. As you say, many views are shared, and that was mine. Regardless, I hope you have a nice break.
@axolotl and @kan you are both valuable members of this forum and I believe through argument and debate we can clarify things. You are both right i believe it is not bad to think about psychosomatic symptoms and mostly they are related with altered neurosteroid balance and disrupted GABA’eregic system but i agree that suggesting people that theory’s are fact and they should proceed on that way is very wrong. Also i do not think that was kan’s intent.
And i have to say that i had been diagnosed one time with hard-flaccid-syndrome
Even then i got reprimanded by urologist about why the hell i used finasteride for hair loss and send me to psychiatrist also latest urologist told me that it is triggered by finasteride.
With psychiatric help i was able to exterminated my existing anxiety completely hell even i went in to chin surgery without general anesthesia.
In time my dick became number ed went worse only thing reversed sensation loss was aromatase inhibition. In my first week i got funny funny preorgasmic feeling starts from upper half my penis to reaches rectum and pelvic floor. Every step i took was giving me unbelievable pleasure. Nowadays i have restored sensation on my genitals But still i feel rectal fullness and sharp pain while ejaculating and ED persists
@kan, I’m staying out of the business between you and @axolotl, except for this comment.
I sat back and took it for a week while the member you are speaking of repeatedly insulted me via PMs after I temporarily silenced him for repeated rule violations about stating theories as facts.
Axolotl also had a similar experience with him.
Although some of us don’t feel it, the mods and admins here are all human and tried showing compassion toward someone who represented their self as extremely agitated due to the severe symptoms they are experiencing by giving them multiple chances while they were behaving with hostility toward us.
A person can only take so much.
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Hi, i have a question if u can answer me. U Feel spasm/fasciculation/twitchs?