Can't believe I found this community!

[gazahern]

Sitting here in Australia, I was just googling around… particularly to do with brain fog/trauma… and somehow stumbled across this page.

I’m now 39… and find myself severely altered. Would be 5ish years ago now, with a rapidly thinning head of hair, I tried finasteride. It was working. Hair was thickening, about 1-1 1/2" of regrowth… BUT…

I crashed hard.

I’m a highly active person, fit etc. Previously competed in bodybuilding comps and surf as much as time permits. I would go to the gym, load the bar with a warm up weight… do ONE rep… and i would get so light headed, I would end up sitting or laying on the floor unable to continue.

When I asked the “doctors” about this, oh you shouldn’t be exercising… ??? WHAT!!!

Anyway, I spiralled into deep depression. At the time, I didn’t recognise it. To some degree I am still there but managing.

I used for probably 6 - 9 months… I can’t remember the dosage… but when I confronted the “doctors” and they told me about minoxidil also being used to treat high blood pressure, well that explained the dizziness.

By this point, libido gone, depressive, emotionally flat. I found the symptoms on this page of PFS and could tick close to a dozen!

I used to train heavy in the gym, bodyweight hovers around 75kg, could squat/deadlift 2.5x bodyweight easily. Now i’m struggling to do bodyweight. Joints have been suffering and now a constant battle to stay injury free.

I’ve actually considered mushrooms, as research is suggesting the ability to kickstart the brain again (maybe not exactly like that), but a lot of positive things coming out now about the benefits.

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[x ] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ x] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[ x] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ x] Emotional Blunting / Emotionally Flat
[x ] Difficulty Focusing / Concentrating
[ ] Confusion
[ x] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ x] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[x ] Severe Depression / Melancholy
[ ] Suicidal Thoughts

Physical
[ x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[x ] Weight Gain
[ ] Gynecomastia (male breasts)
[x ] Muscle Wastage
[x ] Muscle Weakness
[ x] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ x] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ x] Increased hair loss
[x ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

[Sugarhouse]

G’day @gazahern

Thanks for joining, and welcome to the community. I’m terribly sorry you’re suffering from this disease, but I’m glad you found us too. I’m also Australian - I live in Brisbane - and one of the admins here, and also help run our patient-led advocacy organisation, PFS Network. You’ll see my story on there, along with several other patients.

There is a lot to be hopeful for, and at the moment we have some great opportunities we’re working on, across the research and awareness fronts. Recently, a major study from Baylor College of Medicine was released, and our group is organising opportunities to follow up on that work. We’re also launching a charity, 10 new episodes of a video podcast, and some other projects. We’ve spoken about these elsewhere on the forum, but if you would like to chat I’m always happy to have calls with new patients, so just shoot me a message if you’d like to talk.

I can empathise with your story too. I was very active before PFS - I swam competitively as a teenager, played rugby at a high level, boxed, you name it - and since PFS I struggle to remain active. Anecdotally, many patients find it hard to lift heavy and often suffer a worsening as a result. It may be worthwhile going easier for a few weeks to see how that affects your other symptoms.

Again, please feel free to reach out anytime mate.

[gazahern]

Thanks for the response. Taking it easier… I have been for the past couple of years.

Been off the stuff for probably 2 1/2 years now… but just can’t find it in me anymore to stick to consistent training and serious loss of strength has really been almost a blind side…

Onwards and upwards. I have an amazingly supportive wife, while she may not completely recognise these symptoms, the conversation has started.

[Sugarhouse]

I would recommend sharing the PFS Network website with her at some stage. The explainer video we created earlier this year summarises the condition in a few minutes and is pretty easy to digest.

Hang in there mate and let me know if you’d like a call at some point. Cheers.

[Papasmurf]

And that is why I believe there are hundreds of thousands.