Questions for those of you who are managing to cope

Hey everyone,

I know this won’t be possible for everyone or at all easy especially for those on the very severe side of the spectrum. But for those who are getting by despite dealing with PFS, how are you managing to do so? I’m starting to accept that I’m dealing with a chronic illness and it may take a very long time to get better if at all.

I want to be able to live a decent happy life even if my symptoms don’t improve.

I posted about this the other day but not sure if anyone saw it.
Once PFS hit I knew that not everything would get better immediately so I just set an order of things I wanted to try and improve first .
My priority was fixing Insomnia and then the Gyneocomastia first as these were the biggest issues to me causing the biggest threat to overall well being (sleep) and also a physical manifestation that affected my confidence (gyno)
ED sexual sides, Anxiety, Tinnitus at this stage were less of a priority so I aimed to fix those within 6 months to a year.
Main thing I have done to try and cope is eliminate any stress where possible . I have quit my job and plan to go and study (I know not everyone is in a position to be able to do this but I was lucky with the help of my family for a period of time)
Cardio exercise and weight training is paramount to me feeling better at all, the cardio is resetting brain endorphins and the weights are helping balance my endocrine system . This all tied in with helping me sleep a bit better too. There are some days when I feel depressed and fatigued and have no motivation to do anything , but it’s times like these I FORCE myself up and out . I also eat a balanced diet , I have cut out alcohol (not for ever just for now while I’m recovering) and I have been using Lunesta for Insomnia but have slowly cut down from 3mg a night to 0.5 mg a night with no major disruption to sleep as of the last month.
I also try to avoid any of the “my life is ruined” type posts or anything negative at all in this forum and just absorb the positives and push forward . Believe me…I feel like that most days myself but it is only the strength of mind that has pushed me forward to start feel better . The negative mindset leads you on a road to no where …and I have been there and didn’t think much of it lol
That’s my journey so far and it is really only just beginning , my last pilll of propecia was on sept 11th 2019

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Please complete the survey man

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I submitted a long post about how I cope–you can find it, but here is my short version:

Knowing about the science behind drugs like finasteride, so you can show articles to your doctors, family, friends. The PFS Foundation website is good at this, so is other parts of this website (nonforum parts).

Having at least a couple people family friends doctor therapist who can love and accept you and your condition even if they do not understand it or even if they cannot solve it. Sticking with these people is key for life.

Reducing stress, controlling anxiety, having good or fun things that you turn to (not something destructive or unhealthful–some exercise is good, going to the gym for several hours every day of the week can be exhausting and obsessive, for example).

Reading articles books websites that talk about how to recognize negative thoughts and beliefs that make you negative/depressed/anxious. Possibly finding a good psychotherapist who will do a form of CBT ACT DBT with you to keep the negative stuff away.

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Thank you for the responses guys very helpful, and yes I’m in the process of doing the survey it takes time, thanks.

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Will do ! Where do I find the survey?

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The survey can be accessed through the bar-graph icon at the top of your screen (on a desktop computer) after you have posted a member story, and remember, the survey can be halted at any time and continued at a later time/date.

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Thank you!

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I do wim hoff method I was little skeptical but it is really amazing. I recommend this to everyone.

Yoga is also good.

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  1. Don’t be afraid to seek out medical professionals for help. Don’t expect them to have the answer to everything, but they may have ways of helping some symptoms and it was a comfort/relief for me to know I had paid professionals on my side to help me and check in with me. A therapist was helpful to just talk through things and track progress and keep things in perspective.

  2. Finding a few trusted individuals to discuss everything with. Family, friends, or therapist. It was exhausting for me to feel like this was some big secret I had in my life so was a relief to find a few people that I could be open with.

  3. Find a new hobby or something positive to spend your time doing. Dancing has been my new thing. A great activity that combines physical activity, mental engagement, and social engagement. It is easy to slip into the mindset of focusing solely on wanting to recover and thinking about what you’ve lost and how you want to return to normal. I have found I am at my best when I am focusing on what I can still do and how I can improve myself and my life and enjoy my life in spite of the difficulties of this condition. Focusing on all that I can still learn and experience and people I can meet and the moments I can enjoy with them is a great relief.

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So I started this and noticed a major reduction in inflammation quite quickly which was quite shocking to see and then something really strange happened also quite quickly, my digestion slowed down to a halt. Did you experience any changes at all?

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I noticed that i am calmer and my anxiety is gone after doing the Breathing exercise.

To be honest I have not noticed any other changes besides reduction in anxiety.

I am not too sure but I think I read somewhere that anxiety can increase metabolism. Again don’t quote me on it.

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I’ve noticed improvements in mental sides as well which is great considering not much else has helped. I hope it isn’t a placebo effect. Sleep seems better as well. Let’s hope this rudimentary hack last long term for me. Do you get the same results each time you do the breathing exercises? How long has it been since you started.?

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I have started the breathing exercise December 6-7 months now i was not doing it every day in the beginning, but 1-2 times a week now. I don’t think it is placebo because Wim Hoff demonstrated that in lots of physically “impossible” feats and he attributed them to his breathing technique.

I want to ask you something. when you breath in 30 times exhale and hold you breath and after holding your breath you inhale and hold it in for 10-15 secs during exhalation do you feel strange different/good?

my heart rate drops to 65 and I am calmer.

Question is do you after doing last part of the exercise I feel like my brain is flooded with serotonin/dopamea. it feels like your neurons are being flooded? Do you feel the same way that I described?
If not what is your experience?

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I also do wim hof breathing exercise for about 1.5 months. It reduced my anxiety and panic very much. Studying Buddhism and Wim Hof breathing literally saved my life from constant suffering. Once you reduced your anxiety you no more worry much about current issues. Because your body itself can auto generate some happy thoughts and baseline positive state.

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