This is more about despair and deteriation rather than an ask for suggestions. Although it’s very painful I know there are no answers in my particular case.
It’s got to the point where everything I put into my body has become toxic causing a gradual worsening of symptoms. My body has become weaker and weaker as muscle atrophy, collagen loss etc has amacieted my frame and features. I’m plagued with anxiety, suicidal thoughts, cognitive problems, insomnia etc. Last night I woke covered in sweat, my body was numb with pins and needles, tremoring, severe eye pain., Excessive urination and kidney, heart pains (on top of the usual stuff). This was preceded by extreme burning skin and a dramatic onset of fatigue. I had a brief uplift earlier that day from a small dose of vit c/e which I’ve had to take due to not being able to tolerate any fruit, veg or salad. My system is that far gone anything with any nutritional value causes a major event. My baseline is so bad it’s just become an unbearable situation. Those that have followed my posts will be aware of my full symptom list. I have no restbite and have tried everything. My inner strength and resilience has been pushed past the point to what most would deem as extreme suffering/unimaginable. Not many on the forum have had active PFS deteriation for this number of years. I really fear that I will have to bring this to an end. I’m still rational but just cant take this anymore the pain is too much and there is no help coming/nothing to hang on to. Medically there is nothing. It won’t be today but I feel it will happen at some point more than ever. Every second, minute, hour of the day is pure hell. The nightly 2 hours of sleep is the only part of my life where I get no pain which is often ended on the back of a nightmare with me being attacked or viewing myself as a corpse. This is no life for anyone. My son and fear have kept me here this far. No one should be subjected to this, I can’t believe my life has come to this. The person who loved life no matter what and would have found suicide something that would never have entered my head no matter what. It’s just so so terrible. All have some of these symptoms most of the time but to have the full list around the clock even for PFS guys must be tough to fully comprehend. I feel so alone in life no one can relate in my ever decreasing circle. The abandonment and distain I’ve received from some has cut me so deep. Mindfulness, distraction techniques etc don’t help the damage is too severe. I’m beaten
Really sorry to read your story…
Try to hang on man, you have a son.
I’m getting worse all of the time and way passed the point. But thanks mate
@LazarusRy This is just so terrible. I just want you to know you have my deep, deep sympathy and you are in my thoughts.
Heartbreaking mate, I have you in my prayers. From what I can see you’re an incredibly strong person to get this far, I hope you can find the courage to continue for your family. Can’t believe the medical community hasn’t woken up to this condition, it’s so evil letting this happen to unsuspecting people
Have you spoken to anyone from the public/media sphere about your story?
There are no words to express the true extent of this tragedy. You’re a good man, please hold on. We all wish you the utmost strength in this battle.
I contacted the mail again recently for a fuller article but haven’t heard back. This should be all over the news it’s just unfathomable.
Agree beyond comprehension, lost lives and years for something as trivial as hair, absolutely disgraceful there wasn’t major concern regarding PFS years ago, you don’t deserve this crap!
None of us do.
@LazarusRy Really sorry to hear this bro.
Fin is pure poison with a slew of diseases that hit one post use. Im suffering from this as well praying that I might be of the lucky ones.
How long did you take fin? it really sounds like it has you chemically burned. The things you said about suicide hit me to the heart, since I couldnt imagine doing such a thing. However, your so spot on that sleeping is the only moment to fully get away from the damage done. So sleeping forever sounds attractive.
I took it for 18 years on and off unaware of the cause of my deteriating health. I fully stopped close to 3 years ago since when it has took me to hell
Brother, keep on fighting! That’s the only way out of this.
Focus on finding a solution, how hard that may be.
What did you try to get better so far?
You name it but everything burns me after a day or two supps, diet, fasting, exercise, mediation, mindfulness. I’m continuing to deteriorate lose weight, strength, collagen, muscle, brain function, gum tissue it hasn’t plateaud.and my sensitivities have increased to a ridiculous level.
Did you go to an endocrinologist yet and have your blood taken and/or other tests?
I’ve been through two endocrinologists! testosterone was low but recovered after a few months with no improvement in any symptoms. I’ve had ED for a decade. My receptors are broken. All other bloods were normal
Have you tried corticosteroids: hydrocortisone etc they’ve helped some people? You seem a good bloke lazarus, don’t give in mate.
Yeh they made me extremely irritable. Thanks mate
PFS is like cancer in a way. There’re many facets to it and it comes in many different forms with similar symptoms, it’s not universal. Sort of an umbrella for different disorders and finesteride is sort of a trigger. The diagnosis part is the hardest and treatments are mostly individual/tailored.
There’re, however, some commonalities to consider:
- Hormones’ ratio (T; E2; DHT; TSH; Cortisol; DHEA, HGH, etc.).
- Hidden inflammation (infection; gut; allergies; toxins, etc.).
- Deficiencies: vitamins; minerals; fats; carbs; protein; daily calories, etc.
- Sleep problems
There could be other variables involved. Wish I could be more helpful. Stay strong Man.
This is just so heartbreaking. Heartbreaking if we had emotions. You are a true warrior mate when you got this far allready. I also took fin for long, 11 years. And have been into pfs for 2,5 years now. On top of that I took AI for a month with megadose and crashed severely from that also. Yes, every day is a new nightmare. A struggle to try to manage to the next day. I know exactly what you mean by telling that you have come to an end and this cant be tolerated anymore. I think about giving up also every day. Still I have managed somehow to go on for 2,5 years. We cant give up now, we have to fight still? I’ll be here to fight along you. Do you have gut symptoms?
I found this interesting site a while ago. Read some of the program here that might give some new point of views or ideas what to do and where to head next.
Hey Ryan . You brought me some encouragement not too long ago . You helped me out in a time when I was feeling bad and I appreciated that.
It’s easy to remember the happiness we once had in times gone by and it’s even easier to feel that we will never feel that way again .
One thing I have learned is that we cannot predict the future , there may be something round the corner that is a breakthrough for you in one way or another and you don’t realize it yet . To end your life before getting that breakthrough or even before you partake in the journey to it - would be a real tragedy . A tragedy worse than suffering with PFS for 3 years , worse than suffering with it for 4 years , 5 years etc or any amount of time .