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
@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.
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.
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.
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
Yeah, I feel that if you have something altered with your receptor quality/density, manipulating hormones may cause more issues.
100% 1 quarter of a magnesium pill blew me apart, same with 2mg or melatonin and a small amount of t gel. Foods with nutritional value put me into hell too. Full avoidance doesn’t do much as my baseline is that bad. My receptors are on their knees I just hope they start to recover at some point
The serious brain fog made the mind a zombie. It’s like living a day as a corpse. I don’t think I’m alive.