What do you think is the hardest symptom to deal with in daily life?

I’ve tried so many things I just lost count, nothing has worked.

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I consider myself a mild case with pretty severe insomnia and moderate to severe (fluctuating) sexual dysfunction being my main symptoms. I really sympathise with those dealing with drastic physical and mental issues because I’ve realised even my symptoms, despite how comparatively mild they are, have had a huge impact on my life.

The worst would have to be reduced sleep as it affects my ability to function every day. The second worst would be poor sexual function, it sucks but I can pop a viagra and could have sex. Finally tinnitus, it’s annoying and as you said a constant reminder of our mistake of taking this drug, but ultimately does not impact my life drastically. I had depression at the start, that was pretty crap would be up there with insomnia. On the bright side, I’m coping with my condition far better and am remaining pretty level headed about the way forward.

@Forwardsnotbackwards sounds like you’re in a similar camp to me with mild to moderate symptoms. I’m not saying our symptoms are not debilitating because they are, however in comparison to some our predicament is a cakewalk. I believe our symptoms can be managed and lived with if we approach our condition constructively and adopt the right strategies. Feel free to PM me if you want to talk about coping better, maybe we can help each other. As @Greek wisely informed me not too long ago, we need to be mindful of what we post and recognise that for some PFS has had a far more severe impact. We should support and champion those who keep on despite such debilitating symptoms and try to refrain as much as possible for having a self-pity party despite how easy that might be. I’m not trying to say that this post is a pity party, I think its useful and can be theraputic to talk about our symptoms/condition, nevertheless, i’m just giving my perspective.

There are some truly brave and resilient individuals on this forum, @LazarusRy and @axolotl come to mind.

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Erectile dysfunction, loss of majority of genital sensation, some loss of libido.

It’s not just annoying physically, it also affects my self confidence and my faith in finding and keeping a compatible romantic partner.

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I agree and like what you say here @whathaveidone4669 .
Yes the insomnia was the turning point for me as it was so bad it made me realize something was truly wrong and that I had this condition . I accepted PFS after that and it really really affected my life as I mentioned .
I think that’s all I was trying to find out by posting this , I put so much weight on sleep pattens and success etc that I come to associate sleep with PFS - when I have insomnia my PFS is bad when I have great weeks of 6 hours plus sleep I start to think oh maybe I’m defeating PFS and sometimes you can’t help thinking in this cycle . The reality is I have other symptoms going on in the background the whole time that I don’t pay much attention to , Anhedonia , lack of feeling , erectile issues etc and I have started to think - I wonder if some people have different priorities on symptoms and what affects them the most and I wanted to hear what people find the most challenging .
To be honest this has helped me as I wasn’t aware about some of the issues of drastic physical change that some people go through . It sounds horrifying to be honest . It’s good to remind yourself of the difficulties others face when it’s so easy sometimes to only think about yourself and what you suffer

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@Forwardsnotbackwards agree mate well said just thought i’d try to give some perspective and possibly suggest a mindful/constructive mindset. Not saying this post is bad or silly because I can 100% relate and let’s face it where else can we really talk about our symptoms. Which symptoms bother me the most also fluctuates over time however the ones which prevent basic function every day ie mood and sleep are the most bothersome personally. I can accept that I will never be the same sexually although at times this stoic viewpoint is not so strong lol.

My brain plays the exact same tricks on me when my symptoms fluctuate and the whole thing can be just so frustrating. I’ve also had other symptoms during my down periods that I don’t really speak about because I know these symptoms are not a constant for me and I’m optimistic they will improve. I’d take comfort in that many seem to make good mental recoveries/improvements over the long term. I also think fluctuations in symptoms is a good thing and could be a positive sign of improvement over the long term. From what you’re describing i believe things will improve for you its just going to be a long and at time tough road.

Glad you found this discussion useful and I hope you get out of this recent slump real soon

Ok, forget what I said about muscular pain. I think it’s inflammation from gluten and maybe carbs.

Pretty much the same symptoms, and same concern, Wintermoon! You’re not alone, I live just across the border from you.

I’m dating someone right now, she really likes me and she’s super nice so I’m crossing my fingers she won’t run when I tell her. Not everyone will. I haven’t had sex since PFS so I’m going to the doctor to see if the ED pills work for me. If they do, that would be good news, relationship-wise.

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Thank you for that thoughtful post, @whathaveidone4669. It is crucial to recognise the vast differences in patient condition. There is no competition, and everyone’s situation is equally valid. Often I see people talk about frustration with doctors and limited awareness, yet it is sadly common even still for patients who are luckier than others to dismiss the clear reports of those struggling the most. Putting our own house in order as a patient community, acknowledging the variable scope of the situation demonstrated in literature and now our survey, and supporting each other is wholly necessary before the rest of the world will take this issue as seriously as is urgently needed.

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No worries @axolotl your story has been a bit of an inspiration to me, the mods do not get enough credit for continually contributing as individuals to better the situation of 1000s living with PFS.

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For me its the tinnitus (high pitched, fluctuates from moderate to very present aka retard mode) icm with slight muscle soreness my neck, jaw and shoulders and i quickly get headaches and eyes get tired quickly.

Itchy scalp and eyes pain.

I had this, too. It was immense. Hopefully yours goes away with time. It took 2.5 months for it to go back to normal.

4 years, still there. No hope

Ahh, sorry to hear that, man. This was definitely one of my worst symptoms. Do you also have accelerated hair shed?

Yep. That’s depressing

I guess it may be a receptor issue for you. Do you think you have overexpressed androgen receptors? Do you notice far more body hair?

Yes it’s androgen receptors upregulation. More manly but no sex drive (that’s weird)

First place is the digestion and muscle issues. Second place is the lack of caring or passion for life and third place is the unknown ability to sleep well through the night.

Have you ever experimented with soy?

Soy used to make me feel better for a day or two then boom