Looking for some advice from guys who have had pfs for a while. Any tips, advice, or anything that has been most beneficial? I am a member of alcoholics anonymous. We all support each other and stay close because we share a common addiction to alcohol. It has been hugely helpful to me. I believe we should have the same type of support system here. I need it, I’m certain others need it as well. Thanks.
Our “support system” should be based on progress, rather than pity parties. Planning media/social awareness strategies have proven to be therapeutic along with helping our cause. Many people have told me that our Summer '12 media onslaught helped their psychological well-being.
Im not calling for a pity party. Support for people with chronic illnesses is constructive, and already exists for other diseases/conditions. And it is a separate issue from media awareness entirely.
You’re right, and the ‘pity party’ remark was crass. Like it or not many of us have a serious health problem and most people with chronic illnesses have formal support networks. Nothing wrong with seeking others who have had the same condition and faced the same problems, which on our case are made worse by the lack of formal recognition of this and the unfortunate embarrassment factor. Unfortunately there are not many of us and we are spread all over the globe.
I am aware support groups are separate issue from media awareness. I said that working together to advance the scientific understanding and media awareness of our condition has shown to be beneficial to members’ psychological well-being. It is the advice you requested for your support system. Good luck with it.
There’s nothing to say… We will go to our graves robbed of what was our happy lives. I was just tasting manhood in my prime. All taken away.
I think you incorrect here…I would guess men that are currently taking Propecia with no side effects are still at risk for PFS…in my case and many others I’ve read on here, the side effects got bad only AFTER stopping Propecia. I hate that this might be true, but I think we may just be the first wave. If this drug were pulled off the market, a tsunami of victims could follow. I hope I’m wrong…
I was on propecia for ten years without any side effects. I only got the side effects when I went off propecia. I am sure that if propecia is pulled from the market, a large percentage of the millions now on propecia would get side effects.
That’s true. Finatruth was totally fine for 9 years, then as soon as he stopped he was destroyed. I’ve read other similar accounts. The number of PFS victims is only going to go up, and I would say very quickly over the next few years. Maybe that will help get the word out and find a cure.
I was fine for 13 years.
Then as soon I stopped I was destroyed.
There is a common theme here…
Snap… Me too, fine on the drug with only mild side effects, stopped taking it and life ended.
The most beneficial:
Strict diet and regular exercise
I find that exercise can make my brain fog and sleep worse but not sure if this is the case?
did 3 miles this morning. man, i hate it, but i have to do it. i figure i’m already “dead,” so i’m not really afraid to “kill myself” with intense exercise. and the benefits are there. towards the end of the 5k, when i feel like i’m about to die, i just tell myself to keep going, that i’ve got nothing to lose and everything to gain, and that’s when i start to feel the endorphins take over and a little more endocrine balance than the last time. i still have a long, long way to go, but i have to start somewhere, right?
“boo hoo, waaaahhhhh, i can’t do it, i can’t, i cant!”
well, i can’t say that sh!t anymore. my life is essentially forfeit. so, i don’t care anymore. beat my body into the ground? sure! only one way to go, and that’s up, because i’ve already found rock bottom.
“grabbing my balls” and going to yoga in a few.
teach says i’m a natural
and that’s because i push myself — and that’s because i just don’t give a f*ck anymore.
also, don’t forget to cut out the gluten and dairy (and meat, if you want). ate a bunch of chocolate chip cookies the other day. talk about brain fog. been making a lot of veggie curries lately. actually pretty tasty stuff!
also doing kelp (thyroid), b5 (adrenals), organic multi, vit d, and some other stuff in the am. i’ve taken so many supps, and less really is more.
That’s awesome. Seen any noticeable results so far?
noticeable? i don’t have rock hard boners yet, but it’s given me a much more even headspace and i’m much more physically fit. i feel better in my own body too. but like i said, no giant stiffies yet. my balls are hanging lower though, and after 7 days straight (not even that really, but i did do 7 days straight), my left nut (affected by varicocele) feels closer to my right nut, which is good. more spontaneous half-erections. more energy. yada yada. just all-around, basic good stuff, nothing game-changing. i’m still not the athlete i used to be, but like i said, i lost everything. comparatively, this is wonderful.
yoga increases allopregnanolone (and therefore gaba) in the brain, something we could all use. looking to work in kegels and meditation for a synergistic effect.
Any progress, however tiny, puts you that much closer to a recovery. Keep at it, man. 
Can’t say it enough- I want researcher to know we are all affected on the left side of the body, left testificle pain, left variciole; left knee pain, left left hip pain etc
my left armpit doesn’t smell like B.O. anymore. well, mostly not. after 7 days of yoga straight, it smelled a lot more than it usually does (although i was stinkier in general), although at the same time, right after i acquired pfs, i stopped producing earwax, and after 7 days of yoga, i had way more earwax buildup than pfs-normal. true story.
Great, looks like you found the “bottom line” about life - how it’s mostly about you just telling yourself that you are/aren’t X thing, that you could just stop giving a fuck about what you say about things and take a distance/become mindful of your thoughts, thought patterns and reactions. It’s different than dissociation/numbing or unprocessing of feelings.
Sorry for advicing but: If you are going to punish yourself with excersize tho… that’s fine, that’s a fine attitude… but please, please increase your carb intake in forms of glucose and fructose like hella lot. Honey, berries, fruits. If you are onn a strict paleo, you’ll just end up with worse adrenal exhaustion than what you already have, you need simple carbs especially if you exercise. You can take starches etc too but in smaller amounts and with other food.