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
Yeah, I feel that if you have something altered with your receptor quality/density, manipulating hormones may cause more issues.
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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.
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Yes, nothing
I have the same problem with sleep, I took Oral.