why does htis happen?> how do we testforit?
Huh?
why do I crash after hard exercise? I thought I read about iton here before
No idea what you’re talking about. Most guys end up with low Testesterone/LH/FSH within weeks of quitting the drug, that is what the “endorcrine system crash” is.
This is a hormonal reaction independent of exercise, when DHT typically comes back online after 5AR2 is no longer being inhibited by Finasteride.
Really? I know exactly what he is talking about - it’s clear as glass. Why does he crash after exercise? As I’m sure you know, there are plenty of posts here by various members discussing that.
@JEOYE: It happened to me too after I crashed. I used to run 8-10 KM 4-5 times/week but suddenly couldn’t because it made me crash even worse. Three years on and I can exercise just fine.
I don’t have an explanation. The only thing I can think of is if this condition possibly, among other things, affects hour adrenal glands (via whatever mechanism) and we suffer from adrenal fatigue (among other things), which plenty of member on this site have mentioned already. You can google “adrenal fatigue exercise intolerance” to read more about this.
Maria:
If your only intent is to come here to argue, despite not even having taken Finasteride nor even being of same gender as others here, then I’m not sure you’re on the right forum.
As you’ve posted yourself, your problems could stem from a multitude of different drug(s) that you’ve used in the past (Accutane, SSRI, intravenous antibiotics, high dose synthetic estrogen) and thus a variety of different mechanisms of action. As you are not 1) male and 2) did not exclusively or solely take Finasteride, you are not actually part of the same target demographic of this forum. Therefore, your experiences and issues are different than those of the men here.
No offense but I’m growing tired of these snippity comments from someone who registered on a site that targets a specific demographic (of which you are not) and who ignored the sign up rules as such… yet you continue to dole out argumentative advice and question the nature/patterns/hypogonadal aspects of PFS upon which this site was founded, as has since been described by various medical professionals and published articles… all of this despite PM’ing me in the past to say you weren’t going to post much, seeing as you recognize you are not in the target demographic.
The PFS problem and timeline has already been outlined at en.wikipedia.org/wiki/Adrenal_fatigue
I’m not trying to be harsh, but that is the reality of the situation. You are in the absolute minority, on a site highly focused towards men who took Finasteride, and quite frankly the fact you chose to ignore the registration rules regardless is not appropriate, and this advice you are giving, despite not having taken same drug/gender, is from an unrelated viewpoint.
No, not everyone gets the post-drug “rush of androgens within weeks of quitting and drop in Testosterone days later” (hypogonadal endocrine system crash), but it is one of the key hallmarks of PFS that is unrelated to excercise or any other outside variable – rather, it is a hormonal, homeostasis and hypothalamus-pituitary axis-mediated mechanism, typically occurring to some men once 5AR2/DHT are no longer inhibited within weeks of quitting the drug.
Joeyt,
It happens to me as well, my limit is about 20 to 30 minutes of bicycle exercise. If i do weight training i ll feel awful the following days. I tried swimming once for one hour, and i felt terrible for the next three days. I suspect it could have something to do with our inflamatory response, as if it has been altered after finasteride. When you exercise, you harm tissues (very small lesions, that is normal). What is normal is for the body to heal itself. What i have observed with me is that instead of immediate healing, it seems my body overreacts, in the form of inflammation, and has a hard time to stop this process, wich lasts for a couple of days in my case.
Because heavy exercise increases your androgen levels and many of us don’t respond well to that. This has been discussed a number of times before in this forum. It’s the same thing like some/many men don’t respond well to androgen supplementation and some even crash after orgasm.
I also know exactly what he is talking about. Any intense exercise for a prolonged period of time often causes me to have some sort of crash. The symptoms commonly include; complete penile numbness, eye lid twitching, severe brain fog/ cognitive issues and disrupted sleep.
My first suspicion was that adrenal fatigue was responsible for this negative reaction to exercise that previously only made me feel good. However, having read many of Awor’s posts i now believe it to be caused by my body reacting badly to an increase in androgens.
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Awor,
Any recommendations? Avoid exercise? Is there anyway to test this insensitivity? Have you discussed this theory with Drs?
Sry Ill try to read abit on the forum but like the rest of you I hate having this consume my life
Mew:
Let’s clarify some things because you seem to confuse a number of things.
First, you don’t have to treat me as someone who does not understands science, OK? I have studied at the best universities in the world, I have studied for and worked with Nobel laureates, and I have worked at a top notch research institute with researcher who are at the top of their fields . So, I am highly aware of what is/isn’t scientific as well as the drawbacks of science.
I see you generalizing once again. Stating “If your only intent is to come here to argue” is to make a total generalization from 2 out of my 57 otherwise friendly, non judgmental and non-theorizing posts on this forum. I have NEVER argued here. Ever. I indirectly questioned your lack of politeness in two posts. That’s all. That is not the same thing as arguing. End of story.
First, I have got the exact same issues as the members on this forum (cognitive, emotional blunting, sexual problems etc). The one and only difference is that my genital is a vagina. Now, would you be so narrow minded to actually believe that genital sensation in men and women stem from different mechanisms? Do you seriously think that men and women who loose genital sensation from taking either of the drugs that have caused this condition have gotten different mechanisms disturbed? Transvestites have surgeries to turn a vagina into a penis and vice versa; that’s how similar our organs really are. Ovaries translate into testicles. Do you seriously think that sensation, cognition and emotions are controlled physiologically differently in men and women? Do you really think that the one and only route to getting the syndrome you guys suffer from is via Finasteride?
Each of my sexual symptoms can be translated to that of a PFS sufferers symptoms, one by one.
This is really quite annoying. You are making things up. You are inventing things. I have NEVER DOLED OUT argumentative advice, ever, EVER, on this forum. Your accusation is a resort to a straight up lie on your part. More over, look through my 57 posts and come up with ONE post where I have given any member on this forum advise or promoted a theory. I have strictly stuck to posting my own experience with various supplements. That is the one and only thing I have done on this forum (and I have received tens of PMs thanking me for posting my story and inquiries about supplements I have tried). If you don’t have the sharpness to read my writing properly, but decide to read into things beyond what I am actually writing, then I’m sorry and there is not much I can do about that. What you are accusing me of is 100% nonsense.
Once again you are making things up. I have NEVER EVER questioned any theory on this forum. Nor have I ever argued for a theory. Ever. Why are you making these things up? I have never said anything remotely close to what you are accusing me of.
Fair enough. 57 posts.
OK. Now let’s get something straight and therefor let me explain how I got hooked on this site in the first place. I initially posted a question here, asking if my condition resembles PFS. I forgot about my own post and didn’t come back to this site, and would not have if I had not been contacted by one of your admins. Several weeks after posting a message here I received a message from Awor, who wrote that he found my case very interesting. He asked me a series of questions in a few separate pm:s, which I took the time to answer as thoroughly as I could. He spoke to me in person. He concluded that I suffer from the same syndrome. That’s the reason I caught an interest in this site. Perhaps, the two of you should discuss the direction you want this forum to take. It seems to lack consistency in its management.
Well, can you actually see yourself what you are doing? You are running a forum for people with a condition that has not been recognized by the medical community and which has been totally ignored by the pharmaceutical industry and the FDA and is ridiculed by most doctors. Yet you have the guts to accuse tens of thousands (if not hundreds of thousands) of professionals and patients all over the world of promoting a different syndrome, coined as Adrenal Exhaustion, as quackery. How exceptionally hypocritical. And please, don’t give me a Wikepedia link. Give me peer reviewed research, that has been published in a respected medical journal, that proves that Adrenal Exhaustion doesn’t exist. Until then, the verdict is up on that one, just as it is with PFS, unfortunately. Sorry.
Once again Mew, you keep arguing that I give advice. If you try to sharpen your critical thinking a bit when reading, you may realize that I have NEVER given advice on this site, ever. This might be a difficult concept to grasp for some but: advice is not the same as stating your own experience.
I don’t see how this fits into anything that I wrote above.
Ah, so the adrenal gland is involved then according to this theory (?). At this point I am not inclined to put the faith into any theory. Massive amounts of research is needed before you can claim to know anything or make statements of what likely has happened. I keep my mind open for any possibility. The possibilities are infinite and may really be beyond what science can solve at this point.
The way you manage this forum is appalling at times. You randomly allow yourself to be rude and moody with certain members, you express yourself at times in ways that come across as pure bullying and straight up mean. For example, the way you decided to comment on Braziliandude’s thread on auto hemotherapy was purely nasty and likely hurtful. Moreover, ad hoc you decide to insert a rule into his thread, along with other nasty comments, that he should wait at least 4 weeks before posting success with a remedy, while other members do that all the time. Since when do members have to wait for 4 weeks before posting positive benefits of a remedy/supplement?
You are accusing me of making “snippity” comments, but you allow yourself to write snippity comments left and right, as in your absolutely rude response to the guy above: “Huh?”, “No idea what you’re talking about.” Can you hear yourself how snappy that sounds? Of course you knew what he was talking about! Anybody with a brain understood what he was asking. Why were you pretending you didn’t? If it was not clear to you by the context, the two “snippity” comments I gave you were in response to your rude/bullying replies to two other members.
I find your managerial style infuriating - it’s authoritarian and inconsistent. It turns unprofessional when you randomly decide to take a personal stance and judge members’ theories and experiences.
You don’t have clear cut rules about what can or can’t be discussed on this forum, but instead you randomly shun some people’s theories and comments rather than respecting each member’s experiences and attempts to contribute to what is supposedly an open forum and a collaboration among sufferers to solve this problem.
You are random moody and mean in your responses to some members, which comes across as unprofessional and creates an unpleasant atmosphere.
You seem to think that just because you run this web forum you are entitled to somehow allow yourself the right to have the ultimate say on what is/is not “snake oil”, quackery, placebo effects or unfit theories.
You have ridiculed certain members, their subjective experiences and their attempts to recover.
You ridicule certain remedies that have been proven in clinical studies involving brain scanning to work for certain conditions, such as hypnosis.
Rather than keeping an open mind to possible explanations of what may have gone wrong, this forum is becoming dogmatic, ie promotes a principle or set of principles laid down by an authority as incontrovertibly true.
Real scientists keep their minds open to various possible explanation until AFTER proving a certain hypothesis, not BEFORE.
Anyway Mew, I would rather have you delete my account at this point. Don’t PM me, just delete my account. Thanks for my time here and all that I have learned from contributing positive members!
~Maria
PS. You should read up on some research that has been published on the placebo effect and how a placebo effect actually generates a response in a person’s biochemistry, rather than being an imaginary effect. I am bringing this up since I remember that you thrashed the placebo effect at being nonsense once. One book that reviews all such studies is “It’s The Though That Counts” by the pharmaceutical scientist Dr. David Hamilton.
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Maria, you are off the mark here. Mew does his best to maintain the forum in a logical, unemotional way and put forward the mechanisms
which are scientifically proven to lead to the various problems we encounter on the drug. It’s hardly his fault that more isn’t known about why pfs occurs, but it is sometimes important he intervenes with facts in some of the dafter theories put forward here, as they can quickly reach critical mass and lead to many desperate men being duped in the real world (see Greece).
He can perhaps be a bit terse at times but this is vastly outnumbered by helpful advice and a diplomatic attitude to debate. I for one think the forum is very well run when it could have descended into an untidy mess of illogical arguments and random theories. I think we would be a lot worse off if we had just remained as a yahoo group. It has also put us much further ahead of where we would have otherwise have been in terms of media and social awareness, lawsuits and research. It has probably saved a lot of lives. Don’t forget mew started it and moderates it in his spare time. Us pfs sufferers owe him a lot.
Maria,
I think you over reacting to what I posted and if you are offended on a personal level, apologies. I did try to convey the message as factually as possible that this forum is targeted at a specific demographic (men who took Finasteride, and by a lesser extension, Dutasteride).
I just want to be clear: This forum is NOT a general sexual dysfunction forum for unrelated health conditions/substances/drugs, it is highly focused on Finasteride/Propecia/Proscar. To open it up to any and all people who think they are having the “same problems” as us (yet who never took Finasterde) dilutes the userbase/posts with non-Finasteride users, which is NOT APPLICABLE for medical/legal initiatives (ie, they can’t participate) or frankly, forum discussion (IMO).
As we are trying to get research done on ex-Finasteride users to try and uncover the root cause for our persistent hypogonadal side effects from FINASTERIDE, maintaining a userbase of such members (men, ex-Finasteride users) is of critical importance.
Unfortunately, your having taken other drugs and being of different gender automatically puts you outside the current core demographic of this forum. The fact you signed up to post, wondering if your symptoms match our problem despite having not taken Finasteride, and despite registration rules stating this forum is for men/ex-Fin users, is probably the main point of contention. It has already inflamed other members, per the exact points I have made: viewtopic.php?f=3&t=5783&p=46730&hilit=maria#p46730
Regarding your talks with Awor, that is something we will need to discuss in more detail; however I do know he is looking at the bigger picture of 5AR inhibitors in general while I tend to try and keep things more focused on a targeted, Finasteride-only level in order to further the aforementioned research/legal initiatives.
Regarding various theories being debated, shunned etc, personally I am (and I’m sure Awor is too) tired of all the theorizing. All I have ever wanted was to get this problem into the lab with researchers, to get ex-Finasteride users suffering from persistent hypogonadal side effects investigated at the molecular level, to find real, concrete and scientifically proven ANSWERS. Finally, through the combined efforts of many this is starting to happen, and once we have answers, such theorizing will no longer be necessary. It’s taken us 6 years to get there, but things are happening from a legal/medical/media awareness perspective. I’m not here to toot my own horn but I ultimately did setup, pay for this site out of my own pocket, administrate it in my own time on a daily basis, and have been vigilant about trying to maintain a homogeneous userbase which can be called upon for Finasteride-research related initiatives.
At the end of the day, while I respect your opinions and your story is interesting, ultimately you did not take the same drug we did and have joined a forum and are posting experiences from a non-Finasteride user POV. As such, there will likely always be a source of friction in this regard.
I don’t have any good recommendations, unfortunately. I used to love spending time in the gym, lifting weights. I lost over 40lbs of muscle because of this disease. If I excercise, I loose even more and feel misearble on top. So my strategy, as sad as it may sound, was to stop any form of sports all together. All I do these days is take walks and do light cycling and swimming, basically behaving like a 80 year old. This at least has helped me not feel as bad anymore and has paradoxically helped me stop wasting muscle.
Btw, I do not mean my “solution” as a general recommendation to anyone else in this forum. Even though being sedentary has helped my case, it may be counterproductive for others - who may be less severely affected than I am. If you can exercise and don’t feel bad after doing so, by all means, try to remain as active as you can.
You asked about doctors. This problem is way beyond the scope of what regular, practicing doctors can handle. Practicing doctors work by applying known solutions to known problems. None of the above apply in our case. Conventional wisdom doesn’t even apply. You may find low hormones, but correcting them often makes things even worse.
As you know, we are working on a research project for over a year now. It’s even challenging for them. But we’re getting there.
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Dude, you’re barking at the wrong tree. If you don’t want this to happen, have different criteria and don’t accept people onto this forum by default. I was 100% honest with the medication I took. There are many people on this forum who took other medications. Don’t flipping target me personally but clean the forum from ALL non-Finasteride users if you want to be professional about this, instead of singling out one member.
Anyway, whatever you say! I find it impossible to reason with you. Please delete my account, I already asked you once, since I keep getting PM notifications to my private email everyday. It is mutual that you don’t want me here as well. I’d appreciate if you could delete my account today.
Thanks!
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OK, Mew, so before you have deleted my membership, I can insert a study that was summarized in yesterday’s main newspaper in Sweden. This should be of interest to anybody who is on this site for recovery, even if none of the medications are Finasteride.
"70 perch (fish) caught in a creek outside Upsala (Sweden) were analyzed by environmental chemists at Umea Univesity (Sweden). They found traces of the following medications in all of the fish’s muscle tissue. The concern according to the chemists is that some of these medications don’t break down and remain in the fish’s tissue. The question is whether or not these medications, taken by humans in doses several thousand of times higher than that what the fish takes in via water, remain permanently in human tissue.
Sertralin - antidepressant
Risperidon - antipsychotic
Orfenadrin - against muscle tension
Paroxetin - antidepressant
Nefazodon - antidepressant
Sulfametoxazol - against infection
Oxazepam - anti anxiety
Memantin - alzheimers medication
Trihexyfenidyl - parkinsons medication
Tamoxifen - breast cancer medication
Fluoxetin - anti anxiety
Klotrimazol - anti fungal
Flekainid - heart medication
Biperiden - for parkinsons and other
Haloperidol - antipsychotic
Kodein - opiate against pain
Irbesartan - against high blood pressure
Klomipramin - antidepressant
Glibenklamid - diabetes medication
Hydorxyzin - anti anxiety
Difenhydramin - against watery eyes"
Thanks, that was my last contribution before going to bed in London, expecting you to have deleted my membership by tomorrow morning.
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Maria, I’d rather not delete your account unless necessary. All I was trying to draw attention to was the fact you fall outside the target demographic of the forum (which you are aware of), and that your experiences relate to a variety of different drugs, not Finasteride. For some members this is a problem, for others it’s not.
The signup criteria are clear, when users click REGISTER it is in bold red letters: This forum is for Finasteride/Dutasteride users only. I’m not clear how you missed this when signing up at the time, but it’s not worth arguing about at this stage.
Many joined the forum long before a decision was made (enforcement of registration criteria for Fin/Dut users), a decision made to support research initiatives. That said, as you are exceptionally passionate about this issue and have discussed it with Awor in the past, I’m sure an exception can be made. That said, this site’s content will continue to remain focused on the topic of persistent Finasteride side effects.
I’m sorry you feel that way, despite the points that have been put forth thus far. I’ve tried to explain things as clearly as I can.
If you’d rather not receive PMs, just change your email address to something else in your user control panel. I’d rather not delete your account but if you still want it deleted, I will do so. Either way, the choice is yours.
Mew, you have lied about my conduct on this forum. You wrote “If your only intent is to come here to argue…” and “yet you continue to dole out argumentative advice and question the nature/patterns/hypogonadal aspects of PFS”. I have done nothing but the absolute contrary of what you are accusing me of.
You have publicly lied about my behavior here in order to make me look crazy and yourself look rational. Lying is the lowest form of human behavior in my opinion. This is not the kind of level I want to involve myself with.
So please, yes, I ask you again, delete my membership to this forum.
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I have not lied whatsoever. Here is my interpretation of your post.
You stated:
Let’s back up a second: A user started this thread with the title “exercise intolerance” as the subject, with the following brief non-descriptive text as its content: "why does htis happen?> how do we testforit?". Unfortunately, that is hardly descriptive in of itself or enough to go on to provide any real feedback.
The user then posted “why do I crash after hard exercise? I thought I read about iton here before”.
Having run this forum for a number of years I can tell you, the better a poster can describe their problem in detail, the better and more detailed response they can expect from various members. On the other hand, posting a few words leaves it up to the reader to try and guess at what the poster is trying to convey, making it difficult to provide advice.
My response to that post was that typically, “… Most guys end up with low Testesterone/LH/FSH within weeks of quitting the drug, that is what the “endorcrine system crash” is. This is a hormonal reaction independent of exercise, when DHT typically comes back online after 5AR2 is no longer being inhibited by Finasteride.”
Perhaps due to the initial poster’s lack of detail in describing what his definition of a “crash is”, that may have contributed to a misunderstanding. The definition which I and other medical professionals are alluding to is as described above (hypogonadal T/LH/FSH), and is the million dollar question – why is it that when androgen returns within weeks of quitting, does something “biologically get shut off” (as Dr. Traish puts it) and we are no longer responsive to androgen going forward (or so it seems)? Hopefully, through the research efforts here – viewtopic.php?f=33&t=5282 – we will be able to get some answers.
If yourself and the original poster are referring to a different definition of what a “crash” is, then you are talking about a completely different concept. If that is the case, please elaborate on your definition of a “crash”.
Having said that, the next post that shows up is what you wrote:
"Really? I know exactly what he is talking about - it’s clear as glass. Why does he crash after exercise? As I’m sure you know, there are plenty of posts here by various members discussing that. "
I interpreted the tone of your post to be argumentative and accusatory, as if I didn’t know what I am talking about. This was probably further compounded by the fact that it came from a user that 1) ignored the registration rules of this forum in the first place, 2) who believes their problems to be identical to ours despite 3) not having taken same drug or 4) being of same gender, which is ultimately the target demographic of this forum (men who took/quit Finasteride).
That is what I meant by “you continue to dole out argumentative advice and question the nature/patterns/hypogonadal aspects of PFS” – that is, what I am referring to has already been outlined here: propeciahelp.com/symptoms, yet I found your comments to be questioning this exact problem.
Further, you then had the gall to start demanding how the forum should be run, despite ignoring the registration rules yourself (“If you don’t want this to happen, have different criteria and don’t accept people onto this forum by default.”), a point I already replied to previously. I am curious though, how did you miss the big red letters stating this forum is for ex-Finasteride/Dutasteride users when you registered your account and what made you proceed despite this warning? You never did answer that question.
That said, the fact you are accusing me of lying about your behaviour is simply not the case at all. Everything that has been written in this thread is visible for anyone to see and interpret for themselves. I even extended an olive branch regarding membership considering you are so passionate about your issues as being connected with our own (despite some members and Moderators suggesting otherwise) as well as considering your previous discussions with Awor on the topic… yet this seems to have fallen on deaf ears despite my attempts to try and explain/resolve the issue.
Anyway, this will be my last post regarding this “situation”, so let me know your final decision regarding your account.
it was I, not Mew who recommended the 4 week window to evaluate a treatment before coming online and urging others to try it and this is not limited to one member or treatment. It is a ground rule every responsible member should follow.
Men on this forum, especially newer members, are generally desperate for any hope and jump at any opportunity to get their lives and sexual function back. Members have tried surgery, powerful antibiotics and hormones, fasting, other risky treatments, etc. Unfortunately there has been little success and a lot of things tried for symptom management that have brief honeymoon periods before leaving the men with either a tolerance to the treatment/supplement or worse off than before they began. Brazilliandude was online immediately after attempting this treatment urging others to try. Especially for/from the more recent joins here, hopes are too often dashed in their determination to beat PFS. Giving a treatment some time to be evaluated before posting success will help weed out some ineffective or dangerous treatments before they are tried by many desperate men. If you read the last post in the thread, Brazilliandude agreed with this: