Road to Recovery without any medicine - Others to validate

Therapeutic Efforts
#52

Who disagreed to it. You can have a host of all sides neither did I disagree to it. What are you trying to prove ?

I can show you tons of member stories with sexual sides who are suffers from Fin. You will only have a handful suffering explicitly from other sides without the sexual issues.

I never denied you will not have physical and neurological sides. My argument was when you have the sexual sides the others are a supplementary to it (no need to explicitly mention you are more or less deemed to have it). The intensity of it varies based on ethnicity, colour and genes.

A person having his color turn yellow can be seen on a fair colored person and how would you observe it on a dark colored person. Unable to have sex, people will be depressed, the intensity varies based on your age and circumstances and pressure from partner (if you have one).

So, what do you want me to tell? I am wrong ? Ok I am wrong. Hope it makes you happy.

#53

Yes true this forums would not exist without sexual side. Open the member stories and see. If I am wrong I am wrong that is my perception.

And I am not denying the fact there are many with varied sides. So what are you trying to prove ? I am not denying what you said. My perception is based on your what I read on the forum

#54

Okay so you think the sexual stuff is the worst side effect and others are just “supplementary” issues. That couldn’t be further from the truth as most who get full blown pfs stop caring about the sexual stuff.

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#55

oh ok. I agree to you “that most who get full blown pfs stop caring about sexual stuff”

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#56

I’m sad this thread is derailing into this discussion. We’re all suffering from this shit, albeit in a very broad spectrum of symptoms and severity. I came from full blown to “just” sexual sides, but I was always happy I had this forum and its success stories to give me hope.

I was about to start the regimen a couple of weeks ago but twisted my ankle playing badminton and tore a tendon. So I have to put off the running until September. I’m really sad! I’m motivated as hell.

14th of Sept is when I’ll start.

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#57

Don’t worry. The most important is how we recover and help each other in that journey. I hope you recover soon and is able to start the regime

Just thought of sharing another interesting recovery regime from our fellow member.\

I see this post also has similarity. I know I hardly mentioned only 1 task (Sprinting) in my regime which is easy and working for me. In the above post, I see HIIIT/Sprint being referred to and a very stringent food & medicine regime. Not sure if there is any mention of how the rest periods should be accounted for.

As of now, I do not have any restrictions on medicines and food and I am happy it worked with the primary being the recovery during rest days.

#58

Can you update us on how you feel? Still strong libido?

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#59

How are you doing friend?

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#62
  1. Name of the therapy/substance: None except regime mentioned above and now only brisk walking. Important thing is not to over exercise for muscle building
  • Dosage: Brisk 3 to 4 days followed by 3 days break. Initially used bursts of sprints between brisk walks.
  • How often you took it: ____
  1. Status
  • Still using [ yes]
  • Stopped with no lasting change to initial symptoms [ ]
  • Stopped with persistent change to symptoms [ ]
  1. Duration of use: Days [18 ] Months [ ] Years [ ]
  2. Response when you started:
  • Greatly improved [ completely recovered]
  • Slightly improved [ ]
  • Stayed the same [ ]
  • Slightly worsened [ ]
  • Greatly worsened [ ]
  1. Current response (if you’re still using) OR Response in the time before you stopped the treatment
  • Greatly improved [ completely recovered]
  • Slightly improved [ ]
  • Stayed the same [ ]
  • Slightly worsened [ ]
  • Greatly worsened [ ]
  1. Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
  • Greatly improved [completely improved]
  • Slightly improved [ ]
  • Stayed the same [ ]
  • Slightly worsened [ ]
  • Greatly worsened [ ]

Please post my deleted posts to help others as I am not giving any medical guidance.

#63

The forum is not allowing to share my experience even though it is not related to use of any medicines. I have posted a lenghty post but was deleted by admin.

I am completely recovered and leading a normal life prior to use of fin

#64

Your post was removed because it breached multiple rules, which I politely messaged you privately about.

Please familiarise yourself with the terms of service.

#65

Are we sure these new terms of service are working to our advantage guys ?
Maybe it’s just me I don’t know, but people seem to be muted, conversations deleted or moved and it seems to be having an affect on people sharing their stories and experiences.
For instance the user above has not returned since his comments were deleted, i’ve seen this elsewhere too.
Personally i’m also finding it more frustrating and confusing to navigate the forum to keep up date and have been less active because of this.
I might be wrong and you can probably see the numbers that are visiting the site but i’m feeling like it has seemed a little quieter of late.
Admins, your work is tireless and appreciated so thank you! However all i ask is that the above is monitored closely as to whether the new changes are actually of benefit or not. Thanks G

3 Likes
#66

I appreciate the question, and it’s a good opportunity to public reiterate what we said in our announcement post.

We are now a registered charity, pushing for scientific discovery and patient advocacy in the real world. We cannot continue to do that effectively while hosting content which is incoherent with the patient record, clinical specifics and medical literature. We have asked patients make two very simple changes to their behaviour:

  1. Use a ready made template to report improvements or worsenings to condition.
  2. Refrain from theorising when reporting such updates.

We don’t think this should be that hard. We’re not stopping anyone from reporting a recovery story or an improvement. All patient experiences are welcomed, so long as they follow the terms of service.

But patients have to understand that this very public record is now tied to our charity, and is a legitimate vector of attack for groups or actors who wish to delegitimise what we’re doing. That has already occurred in a recent video which attacked our group specifically, linking us to anti-vaxxers and alternative health nonsense. On top of that, these same circular discussions about proposed etiologies of PFS and an endless merry-go-round of prescribed treatments have got us nowhere for the last 20 years. They simply delay effective patient action and scientific discovery.

We are aware of other platforms where these same circular discussions exist. What occurs on those platforms is none of our concern. What occurs on ours, is.

We believe these changes should be to everyone’s benefit and create a more positive and importantly, productive, patient community.

6 Likes
#67

Hi friend,
Need to talk to you…urgently
I am also from western part.

#68

Just thought I’d reply and say that doing sprints at similar intervals about 1-2 times a week also seems to really help with my side effects. Not entirely, but to some degree with lethargy, brain fog, a little bit with libido.

1 Like
#69

Thank you for keeping us updated.

Can you update the specifics of your brisk walks? What duration etc?

I must be honest, but saying brisk walking can cure us does sound very implausible. I’ve been doing all sorts of exercise, including brisk walking and running 5k twice a week in 20-25 minutes without a sign of improvement.

If there’s anything that might have possibly helped you improve it would’ve been a stringent sprinting routine, but even this sounds very implausible with all the HIIT people have tried over the years.

Another question, which is relatively hard to specify since it’s so subjective: When you felt like you had PFS, did you also completely loose the ability to feel excited over stuff in general, positive or negative? Did you also completely loose your emotions, positive and negative?

This is an honest question: Would you consider it a possibility you had a ‘regular’ depression? Many people temporarily loose sexual function during depressions. In addition they get better through exercise also.

A hallmark of PFS, to me at least, is how nothing seems to help symptoms, no matter how hard or consistent we try certain regimens. And if there is anything that does, it’s extremely slowly, like in @Ozeph’s case for example. Feeling any change in 3 weeks, like you said somewhere above, seems highly unlikely for people with PFS. 3 weeks of trying something like sprinting is nothing, if it were as easy as that we would’ve found the cure around the year 2000, when persistent side effects were first reported.
I mean, I’d been running 5ks 2-3 times a week in 22 minutes for the first year with PFS and felt no improvement whatsoever. I’ve been doing serious resistance training until failure for the last 4 months, up to the point I can barely walk after leg training for 3 days and have to buy new clothes because I get more muscular, but nothing has changed to my PFS symptoms yet (I still continue).

#70

I had that. I didn’t care about my children either way and I knew logically that was a horrible thing but the feeling was just not there. Not did I care if I lived or die.

There is some anecdotal stories about single elements inducing huge improvements but they are inconsistent and few apart. For example, I suddenly gained super sensitivity (premature ejaculation) 9 months after crashing when I added vitamin A. Vit A does not do that or we would have found it by now. I don’t suggest taking vit A, on the contrary. Sensitivity went down after a while and then slowly increased over the years. It’s still not what it was but is much better.

There’s another guy who states a recovery after Ramadan (intermittent fasting, IF) and it lasted for many months. I don’t know his state now but it’s anecdotal. I’ve been doing IF for 3 years and it didn’t get me much better in a short time. I think epigenetic is different for each one and what might trigger a change in someone (sometime) does not on most of us.
The bodies natural ability to repair the epigenome is only triggered by acute stress that puts the body in survival mode instead of reproduction mode (in which we are almost all the time). It takes time and has its limits IMHO.

#71

don’t you feel tired? I can’t understand how several members say they have the classic symptoms of PFS and manage to go to the gym, run… anyway I’ve been going to the gym since I was 19, today I’m 31 and since the crash I’ve just been feeling a lot of muscle fatigue, especially in my legs .

#73

Don’t worry, you won’t destroy anyone’s hopes with your post, or at least not with such baseless claims and conjectures.
I mean, it’s nice to have opinions, but if you hold them, don’t expect other people to agree without providing any good justification for them.
You don’t really have any single proof or reason to discredit all recovery stories, not more than just pure skepticism, which although I agree that it’s always good to have, it seems to me that this opinion of yours is just a way of justifying giving up, even despite anecdotes showing that good measures of improvement are possible.
And now that you mention it, yeah, your comments are what you could say “toxic”, I wouldn’t be surprised if some people left the forum for this very reason, this forum can be bad for your mental health sadly (and of course i’m not only talking about your random denial of recoveries).
And sorry to always be the one to clash with you, but I can assure you i’m not the only one who thinks this way, i’m probably just the only one to say so.

#74

“And sorry to always be the one to clash with you, but I can assure you i’m not the only one who thinks this way, i’m probably just the only one to say so.”

  1. This “always to be the one to clash with you” has reached the state of stalking and personal attacking and is against the rules if this forum.

  2. I describe in my critical position the “incredible recoveries” and not the hundreds of serious well documented memberstories who feel much better or feel even “healed” after a time period or a personal treatment experience.

  3. Exactly the self censorship in the community taking all the serious cases their chance to speak up here.
    Some want to vent. Only loose their tears and talk about their pain, without getting an inject HCG, get 100% recovered and shut up. Some severe cases are not recover from hcg after the first three shots.

  4. If you are not the only one, why the others don’t talk to me.
    Why than pm and contact me so many young guys and young women with pfs or pssd over the time. Why I have so many friends here and in all the chats?!

  5. And who left propecia help because of my scepticism.
    In the case of Kiel study and Genomic study I’m very optimistic for all the young ones to get once a cure. Maybe even managing fibrotic tissues with modern specific cell line proliferation.

  6. I support monthly fundraise, I offered my blood for Genomic study, for Kiel Study I’m to old to give s sample.
    I showed up my face before and after pfs on propecia help to beware young guys from taking the dangerous drug.

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