Acceptance doesnt mean you agree or like what has happened, but it lets you move on to deal with it as best as possible. I am trying to ignore the fact that a drug caused this. Cant undo that. All i can do is move forward with my life while dealing with the diffuculties of pfs. I dont need the anger any more. Its not helping me, and its not doing a damn thing to merck. So i need to let that go, be a better activist against this medicine, and otherwise focus on living my life again. Just my thought for tonight. Heres some tips i found useful:
If you want to accept what has happened and live your life like this, go ahead. But many of us here are fighting for a cure from this horrible disease.
I know man, im just saying it seems theres only so much i can do. Im not a scientist. Far more qualified people are working on this problem. So yes, until theres a cure, im not going to waste all my energy worrying over propecia anymore.
i agree, when this first happened to me i would spend hours and hours reading and studying and fooling myself into thinking i could help solve this, which was just so naive
now, i try to focus on the things i can control, like scrapping some bucks together for a donation, or participating in the upcoming study, or doing the news articles when they are requested etc. etc. ⌠just be as useful as you can, but be realistic about the things you are capable of
i am not a scientist, and i have accepted i do not have any real answer no matter how much studying i did
just hang tight man, focus on fixing your body the best you can, and helping out in a way that is realistic
if we keep fighting and doing the best we can, it IS possible that we can all break free of this once and for all, but we must stick together and stay organized
If its any consolation, know that people have recovered from this, although very few. But, what that means is, it can be reversed. These studies are important because they will give us knowledge about the problem so that doctors and scientists can understand it better and find out how to reverse it in the people who still have PFS.
I think scaredoutofmymind is right. This doesnât mean avoidance of fight. You cannot fight it if youâre not in your mind, and you will probably only worsen your condition, eventually preventing a possible healing. I havenât been hurt so hard as some of you: still I can have sufficient erections under stimulation (I sometimes have crashes though) and while this drug made me retarded mentally, I am not completely impeded in life. That said it took me one year to regain some internal peace. I somewhat stopped being scared (eventhough the condition could, as it did for someone, worsen in time). But I think this attitude is a point to start with and I feel it is really helping me. An urologist one day told me that many people with ilness die not because of the illness in itself, but because the illness stresses them mentally. If stress can kill a person, then it wonât surely heal anything. As an example, stress reduces the number of neurons, it doesnât promote their spreading. If we donât find a drug/hormonal cure, what remains us is only the nutritional/holistic approach, and in that case you might want to keep the more neurons possible. What can be done by us, is the research of the best healing diet we can find. As it can be seen, those that progressed the more are those that drastically changed their diet, exercise shedule etc. Also a healing/reset nutritional program is not only our objective but it is for Milions of people around the world, and this helps much. Really nutritional changes can have drastic effects on your body, even in a short time frame. If our system is fucked up hard, that probably is the only cure. There will be no drug that will cure that. I already found a regimen for myself even if I have to adjust some things. This doesnât mean Iâll stop reading things about pfs, but Iâll do it with interior peace.
I am actually quite content most of the time these days. Until I go out, meet women and eventually have to run away from them instead of taking it further because of my shrunken flaccid penis and inability to achieve an erection.
If there wasnât so much pressure to meet a woman and have an active sex life then it wouldnât be quite so bad. There is no way I will ever accept myself as âasexualâ due to the drug, that just isnât me.
So ye, I have pretty much accepted my situation and manage to feel happy a lot of the time apart from when I think about women and the fact that my penis has actually shrunken.
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Keep the optimism and positive energy going. Even on your worst days, remember your better days. Fight for them. Eat healthier, sleep stricter/smarter, exercise to your bodyâs tolerance, de-stress when you need to, meditate if it helps you. Step outside your head when you feel trapped. Push yourself and do not settle. Make donations, spread awareness. Stay constructive/productive. Avoid patterns unless they are healthy patterns.
Keep it up.
mood swings are ridiculous. Today is not a good day. I must have been feeling better when I wrote this post the other day. Staying positive with this is like walking a tightrope. I am only a few inches from giving up sometimes. God I hope they find SOMETHING!!
When I was describing the mood swings to my girlfriend she replied that it sounded exactly like her pms symptoms, elation, despair, often over nothing. Anyway, makes sense, the surge and desertion of your hormones. Enjoy the elation and smile wide on those sunny days.
never feel elated, just some days i will feel normal. Other days that feeling of doom and hopelessness comes over me.
I am realizing this pfs thing isnt just gonna go away. I have to find some way i can live with this! I will never commit suicide or give up. My antidepressant isnt helping at all. If I could cure depression id be in a better position to deal with pfs. Right now im really in a tough place. Every day is a fight. Living normally and going to school is very hard. But i know its what i need to do right now. All i want is something to look forward to
Please go for
TSH, T3, FT3 and RT3 (revers T3). Also test for Hashimotoâs. no all, but some are hashimotoâs positive after Fin. Not all but many of the symtoms after stopping fin are the result of non-functioning hypothyroid. Many feel better after treating their thyroid. Taking testosterone is a waste of time or may make your sympotms worse.
Youve seen improvements treating thyroid?
hey scaredoutofmymind - your symptoms sound like mine and are by far my worst ones. As Iâve mentioned before on this forum i was placed on a mood stabilizer (lamictal) which from the very start forced the depressive periods further apart and made them considerably less fierce. Maybe you could try that?
There are some nasty side effects (like a deadly skin rash) that you need to consider, but the active dosage I have got to (100mg - you need to titrate up over a number of weeks) has made me feel much closer to normal than iâve been since this started. The drug also doesnât have sexual side effects, and claims to not cause hair loss (though this has accelerated since i went on it).
if youâd like to chat about this send me a pm. I also take 5-htp, exercise regularly and eat paleo, which i reckon also all help.
hey guys,
my question is, have you told your parents about suffering from PFS?
I havent told anyone, because it would not change anything, and I do not want to stress them anyways. I only got to thinking about it because I saw my mother the other day (I see her every few months). She asked my if I was okay, I told her yes I was, but she insisted that I should swear to her that I really was ok. She said I looked like a cancer -pacient (tired, no energy, zombie-like" ,without knowing she was actually describing how I felt.
After this I lied to her and told her I was ok, and that I had been to the gym and gotten leaner (which is also true).
I feel bad about lying to her to âprotectâ herâŚ
how do u see it?
I know exactly what youâre talking about. Within the first couple of months following my crash, I wanted to say something to my parents, mainly for their prayers and support. But , they are elderly and have their own stresses and health issues, so 9 months later, Iâve yet to tell them. However, Iâm not sure where my PFS rates in comparison to yours or others. I can say I look the same, and have more good days lately, than bad. So if anything, Iâve been lucky enough to cover it up to this point in my day to day life. All I can say is that so far, Iâm glad I have not told my parents to date.
I hope that you truly start feeling âOKâ so that you wonât feel like your lying next time you see your mother.