How long should we wait before trying treatments?

Therapeutic Efforts Pharmaceutical
#1

From what I have read throughout this forum, no one has recovered by doing nothing.
I understand the risks of self experimentation, and people have been made worse from this.
But I have waited 4 months since I stopped, and my condition has only worsened. No improvements on anything.

How long should I wait, hoping for natural improvements? Is there a consensus here for anything we know is safe and effective for anything at all? Or is trying anything too risky.

#2

It took me a year for a lot of my memory and attention side effects to return to normal

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#3

I’m sorry you’re not feeling any better! But this statement is absolutely false. There are lots of recovery stories where people are not sure what made them better. They just started to improve and stayed that way. The people who claimed to have improved by taking supplements or drugs tend to get more attention, because it seems like a repeatable “quick fix” that seems easier than actually making substantial lifestyle changes.

I feel that you’re also repeating a common misconception about the idea of “doing nothing”. It seems like a lot of people think “doing something” can only be to self-experiment with drugs or supplements. This is a very self-limiting and medically risky belief. This mode of thinking can drive people towards riskier and riskier interventions that can introduce new or worsening side effects. Of course, people are responsible for their own choices, and I understand why people might want to experiment, but I think we need to broaden the definition of what “doing something” really is. For example:

  • Support research. Imagine having a scientifically validated cure, but then being too messed up from arimidex (or something like that) to take advantage of it.
  • Report side effects to the FDA. Attention from the medical establishment lowers the stigma, increases awareness, and unlocks funding for research.
  • Organize your life to better cope with PFS. We might in this situation for quite a while. Before getting this disease, perhaps you wanted to start a company, or make it on Wall Street, or get that Vice President title. I’m sorry, but the reality is that you probably can’t do that right now. You have to your plans to something that works with the disease. It’s painful, but it will reduce stress over time. And you won’t be constantly torturing yourself about how you’re not being more successful at school/work, etc.
  • Improve your diet. This is not easy. Diet is highly individual – many people have gut issues that makes it even trickier to navigate. You also have to learn to cook healthy food for yourself that you also enjoy eating. This is a big task.
  • Improve your sleep. Getting 8 hours every night is hard enough. There are a lot of things to improve on top of that – sleep environment, restfulness, regularity. You might even want to get a sleep study done to see how you can improve.
  • Exercise. Very difficult to get right. Some PFSers also get worse with intense exercise, so you have to find your ideal sweet spot to start with. There are tons of exercise techniques to navigate through and evaluate. Finding one you like and that gives results can take years.

I’m sorry if I’m singling you out @Finarb – I understand where you’re coming from, I really do. I’m writing this because I see so many people who express similar thoughts, and I wanted to leave this here in the hope that people might start pulling on some other levers than the “which drug/supplement will cure me”-lever. I wish you the best of luck!

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#4

From what I’ve read on this forum no one with the full plate of severe symptoms has recovered, period.

1 Like
#5

I started hormone therapy right after my crash, which made my hormones even more chaotic. I recommend quitting fin for a year before trying anything

#6

I felt the same way as you ,where I was doing nothing as I thought this was the best way to improve. Without using drugs or supplements.

Somethings got better this way like Gynecomastia.
Sleep problems kept coming back horrendously even when not taking anything :man_shrugging: I suffered worse with sleep compared to most on here, but i was almost a year and a half out from my last pill and still getting 0- 2 hours sleep a night .
I got to the stage where I had to do something to try and sort that out

#7

@Forwardsnotbackwards what did you do for sleep? Did you manage to improve?

#8

The main things that helped sleep where Magnesium Glycinate and Mirtazapine really.
I get 6-7 hours each night at the moment from just using Mirtazapine

#9

@Forwardsnotbackwards - can you add your experiences with these substances to your member story, using the new self-reporting form?