This sounds like a migraine with an ocular aura.
Yes man, exactly. Never got them until relatively recently. Before PFS, I would sometimes get sudden throbs and pressure inside my head, especially if I exerted myself. I fully believe that we have all these crazy things already encoded in our genes, but the drug helps trigger them. Because before PFS I would have the OCD, the anxiety, the compulsive thoughts, but I was able to tame them. Now, it is the same things but about 10x worse.
I want to touch on my physical changes quickly… I have described very crazy changes to my body (feminization, fluid gain, wrinkly, stretchy, etc), but as time moves along, I realize that my skin has softened, lost pliability, and it has thinned. It’s not so much fluid gain as it is a shift in fat deposits, and thin, stretchy skin. I can see the veins around my upper chest and shoulders, and in other areas that I never could before PFS. Granted, I have lost a lot of subcutaneous fat (hormone changes and I eat less). However, my fat deposits are in my low back and around my thighs, I suspect that my body is able to store fat much more easily now. That’s why I’ve been careful with my eating.
Haven’t posted on my own story in quite a while, wanted to provide an update for anyone who cares to read:
The moderators are currently editing the Youtube video I posted a while back. I hope it will be up soon and start to accumulate some views and comments.
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I’m lifting weights again and though it feels great, it’s definitely different. Very difficult to see progress, not even sure if I’ve made any. However, my neural adaptation is still in tact. 20 lb dumbbells were incredibly heavy for me back in June, and now they aren’t nearly as heavy. If you’re getting back into exercising. Start with BODY WEIGHT exercises and stretches. Work for personal records at pull-ups (or chin-ups) push-ups, body weight squats, and weird shit like sidelying hip abduction and standing calf raises. Do this for a solid month or two before trying the weights. Try to stay consistent on stretching and foam rolling. Makes a difference.
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If any of you guys have been panic-stricken, walking balls of shit throughout this mess (like me), download the ThinkDirty App for hygiene products.
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Cracked down on my diet and focusing on less calories, more nutrients. Steamed vegetables like brussel sprouts & broccoli, lean beef, onions & peppers, and some eggs, trying to limit carbs like gluten-free or vegetable pasta, potatoes, and nut butters & honey.
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Double filtering my water (brita filter on the faucet and a PUR filter pitcher). Drinking out of stainless steel, glass, and ceramic
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storing food in glass pyrex containers, no plastic
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going for walks shirtless in the sun when it’s out. The area I live in for school kinda sucks and it’s always overcast and raining.
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getting back into boxing. I did this for a while during my first 2 years of college, and there is a boxing club here at the school. I’ve been going about once a week. Feels good to get another form of exercise.
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Still trying to break my cycle of isolation. My anxiety and OCD/racing thoughts are the absolute worst, very hard to look people in the eye and maintain a normal conversation and facial expressions when it feels like World War III is going on inside my brain at all times. But I have some very good people around me here.
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Trying to stop dipping tobacco. This is proving tough, as I’ve had the habit since about 6th grade. Trying to atleast limit it to once or twice a day.
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limiting intake of alcohol. When I go watch a football game or hang with some classmates, 2 beers is the limit. I don’t go past 2 beers.
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If you’re a coffee drinker, make sure you’re making it at home via a French Press or other natural method. No creamers or sugars added. Try to find a good, low-acidic dark roast coffee. Shit is great for you if you keep it under about 20 oz a day.
I’ve stopped chasing doctor’s visits and bloodwork. I’ve accumulated lots of doctors bills and debt, on top of my already-problematic credit card debt. I’ve really come to realize that we are all playing the long game here. The improvements we are going to see aren’t really going to be trackable at the time. They are very gradual, and to see them you have to get on with your life. I am truly blessed for going into Physical Therapy, because it reminds me that there are people out there with some real bad shit, like being stuck in a wheelchair, or having Multiple Sclerosis, etc. I think perspective is huge. The more I get out of my own head (and my own way), the better I feel.
I’m going to recover. It is truly tough to believe that with every ounce of my being, because things are still so shitty, but I have an intuitive feeling that things are going to be alright after a period of time. I believe it might take a few years, but I’m gonna be alright. I believe most of us will. We just have to keep pushing through it, one day at a time. At first, every single day is shit. There are no positive moments, no spurts of energy. No light. But it will come, you just have to be the one that lets it in. It is our responsibility to build ourselves back. Over time, we will have a day here and there that really wasn’t so shitty. Then we have a few days. Then we start stringing them together. It just takes a change in momentum.
Let’s keep smashing this shit.
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Something else that I thought was really cool to add. Closer to my graduation and licensure date (May 2022), I will be contacting the PFS foundation about getting on their directory as a licensed healthcare provider that acknowledges PFS. I will have substantial knowledge and treatment methods to hopefully help current and future sufferers of PFS with the musculoskeletal issues, and I might even get to meet some of you guys in person, depending where I practice… Let’s get it.
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Your post made sense until I got to the part about you dipping tobacco. The issues w that are endless not to mention it raises estrogen and glutamate plus all the chemicals in it. You’re double filtering water but dipping? Come on dude. Doesn’t make any logical sense and it’s hard to believe you’re severely affected by PFS if you can even handle dipping without serious side effects.
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yup guess you’re right. You’ve exposed me. But honestly, I see all the same shit about any type of exercise or positive thinking, or moving forward in general. so this comment doesn’t really surprise or trigger me like It would have many months ago. Yeah I dip, I drink coffee, I even drink a beer occasionally. It worsens my brain fog pretty well, but it’s what I choose to do at the time. Doesn’t mean that I don’t have PFS. If some of you guys would get out of the mindset of constantly comparing dicks as to who’s life is more fucked up, maybe you could move forward some also.
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Not comparing at all… Not even remotely. Just goes completely against your “healthy mentality.” Sounds like utter and complete BS to me to be perfectly honest, but that doesn’t surprise me. FYI a beer and a coffee don’t equal dipping tobacco on a daily basis. Sorry, not buying your line buddy.
You believe I’ve damaged my credibility purely based on the fact that I’m honest about dipping tobacco? If you’ve thought that I’m full of shit this entire time, why have you PMed me about your SI/Coccyx pain and asked for treatment methods? You act like I have some sort of hidden motive by trying to spread some positivity on here. Or that I don’t have better ways of spending my time. Not to mention I’m one of the only users who has gone as far as to make a personal video about PFS that will be uploaded to Youtube…while I’m actively pursuing a clinical license and will be working with patients who could very well come across the video…Don’t be ridiculous.You are right though, dipping is definitely unhealthy. An addiction i’m actively working on.
You also seem to think the “healthy mindset” i’m promoting is just some sort of front and not something I’m actively living out. I’m a pretty damn humble guy, but i’m gonna take a little stab here… Have you seen pictures of me man? I’ve always been pretty small, but i’ve held a decent shape for a long time.
Because you presented yourself as a health professional in the field of PT and you said you were experiencing the very same symptoms as myself in terms of SI/Coccyx… I found your video questionable to be perfectly honest.
Maybe you’re doing this for publicity, or to build up your future practice? Who knows? I’ve never seen a PFS guy with the shape you’re in and I mentioned that to you a while back. Hidden motive or not, I really don’t care. I’m assuming like everyone else on a site like this, they are truthful.
Regardless of ALL of the above, I am not trying to get into an elongated argument with you here. I just found it fascinating someone postulating such a healthy lifestyle has an addiction to probably the worst thing even a healthy person could be doing for themselves, especially so with a case of PFS so bad that you posted a video on it… I hope you stop that habit and beat the addiction. No further reply is necessary.
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Let’s just not do this.
Things are hard enough, there’s no doubt in my mind that @Dknighten is having a tough time, as are the rest of us.
There are plenty of nurses who do drugs recreationally, doctors who smoke, dentists who drink excessive amounts of alcohol and surgeons who are overweight.
Most people do something that isn’t the best thing for them regularly.
I think give each other a break, especially here.
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Man something has just simply shut off inside my body. I cannot feel my muscles at all. If I flex my muscles real hard for long enough, there will be a burn, but it’s not the same. I don’t feel my muscles supporting my body while I’m standing or sitting in a chair; I feel the ground right through my knee and foot. Climbing flights of stairs gets me out of breath somewhat, but the sensitivity is so diminished because I literally cannot feel my muscles working. They don’t activate and burn the way they should. It’s like they have completely shut down. I have a steady shake in my muscles, they’re super weak even though I’m gaining weird weight. My fat deposits have completely shifted toward the insides of my thighs and around my low back & abdomen. My skin burns frequently (it’s also paper thin) and I have zero cold tolerance. It’s like my metabolic activity is gone, my muscles and skin are producing heat the way they should. When I walk outside or i’m at school and cold air hits me, I can almost feel it inside my bones. None of my symptoms have improved with time.
The longer this goes on, suicide seems a little less irrational. I plan to take a 12-month medical leave from school and go try and get some improvement.
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Sorry to hear about your symptoms man. A long medical leave sounds like a good idea, I can imagine studying is particularly difficult in your current state. Try not to think about suicide; it sounds like a solution in the worst of times but rarely ever is. I hope you see some improvements soon.
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Got my most recent lab results back.
Total Testosterone: 904 (264-916 ng/dL)
Free Testosterone: 14.4 (9.3-26.5 pg/mL)
DHT: 49 (30-85)
T4, free: 1.18 (0.82-1.77 ng/dL)
TSH: 2.520 (0.450-4.500 uIU/mL)
LH: 7.3 (1.7-8.6 mIU/mL)
FSH: 2.8 (1.5-12.4 mIU/mL)
Reverse T3: 18.2 (9.2-24.1 ng/dL)
Estradiol, Sensitive: 16.4 (8.0-35.0 pg/mL)
T3, free: 2.7 (2.0-4.4 pg/mL)
They didnt draw bioavailable T so I’ve gotta get that done again. It pisses me off that everything is in normal range because my body is super fucked up. My T3/Rt3 ratio is low, so Dr. Jacobs is having me try low dose Cytomel. (5 mcg twice daily)
Sorry that i dont search your posts back, but let me ask: have you done more blood tests earlier on? If so, did you have any abnormal levels back than that has improved? (As of your latest is quite ok)
Yeah i’ve had tests done earlier. everything was always normal except bioavailable/free testosterone was on the lower end.
Who knows, perhaps by the time your symptoms will approve, after long time with normal levels.
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Sorry, “improve” i meant 
btw, i have the same: low testo ,high endo levels after crash, and stabalizing values just 2-3 weeks later. I understand we might have epigenetic or androgen receptor’s harm, but i think its much better case than being stuck with messed up levels and having all kinds of external hormon medications which fucks your system further. And having normalized levels might improve our condition in a long term. Human body can adapt and heal
Coming up on 2 years with PFS now. No improvements. Ultimately, I’d say i’m worse now than I was in the beginning all of this. This shit has gradually completely changed my body and i’ve been forced into this weird disconnected state for almost 2 years now. Skin, hair, muscles, vision, sleep, temperature is all still screwed up. Went from very lean, dense, and muscular to very pale, sickly looking soft skin and gaining weird fat everywhere like an old guy. Legs are huge and flabby. No definition anywhere. I can take the backs of my arms and stretch it & pull it. It’s fucked up man. Skin doesn’t tan, just burns and get splotchy. Skin completely thinned all over my body and holds indentions everywhere from anything that presses against it, like an old woman or something. My fingers are even getting pudgy and i’ve lost my jawline. Burning fat accumulating around my sides and legs that just feels heavy and almost not even real. idk how to explain it. Going on jogs, walking outside, climbing stairs simply doesn’t do anything. Anytime I lift weights now my vision gets worse, heart races, and I feel sick to my stomach and shaky. idk.
Still have difficulty reading, non-restful sleep, waking up in the middle of dreams every single night, cognitively feels like i’m in a dreamworld, cold clammy skin, weakness, suicidal thoughts, anxiety, depression, etc. Losing more hope by the day honestly. I was such a driven guy and loved life before this shit and now the struggle of my day is going inside a grocery store or forcing myself to go see friends. I don’t feel anything any more but fucking pain and heartache man. I have to mechanically force myself to give any sort of reaction to anything and when I do something or talk to somebody, I have to just picture in my mind how I think it would feel or what I remember things being like. I’ve simply forgot what it feels like to think clearly, to feel healthy. I see people living their lives and going to the gym & doing normal things and I get so mad and down. i’m in a bad place right now
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sorry to read this bro, are you of a selected few where symptoms got worse over time or is this common among PFS?