Where do I even begin, I’ve been lurking here for a while and on the reddit page every day with some hope of finding help. I can’t take it anymore and I thought it was time to create an account and get my story out there as im not sure how much longer my body can cope. It made me think how many others are like me that view this page and don’t tell their story, I have to do this there is no other option left what do I have to lose I’m barely alive at this point. I’ve tried explaining this to my family and doctors but nobody understands and to be honest I get why as the things that has happened to me are honestly so unbelievable you can’t expect someone to understand any of this. There’s so much I want to say and if I could find the strength to I would make a video to go as in depth as I can and share my story explaining everything that has happened to me. I’m 29, before all this happened I was on a mental journey in life I didn’t have a great past and struggled a lot with my confidence but I started to climb and I was at a point where I felt alive and in control of my mind. I plan to talk about my life before taking this a lot more if I ever do make a video as I think it’s just as important to explain why I decided to but for now I that’s all I will say. Before this all happened I was taking care of myself and I felt things which I never thought were even possible, I lost a lot of weight and felt nothing could stop me that’s the only way I can describe it. I obviously had some sort of testosterone increase during this time as I felt really good. I had always had a good head of hair until one day I remember being in the bath and noticed my hair was thinning and it got worse over time. I started to obsess over it as I didn’t want to go bald and was thinking of ways I could stop it. This went on for a while and I eventually found finasteride online. I never read much into the side effects as I thought they would just be low sex drive and depression, but I thought the chance was low and ordered it from an online pharmacy on the 15th of March 2021. If I had done more research into the side effects I would never have done it. I ordered one months supply and started taking it a few days later when it arrived. After I took the first pill I remember that day I felt something instantly went wrong, it happened literally within 20 seconds of taking it. I was at home and looked out my window and felt this huge feeling of sadness and was lying on the floor and my testicles started to ache. I thought maybe it was normal and I obviously was still obsessing with the thought of my hair falling out so I thought my body would adapt and I could handle it. I kept taking it for the next few weeks and things just became strange, I felt sad all the time and lost interest in sex but still thought it was worth it as I would get my hair back. My face started to change it looked less masculine and thinner, I noticed that my beard became soft and had patches on each side of my face where my jaw muscles are. The skin on my face became extremely dry and my eyebrows were thinning and falling off. My body hair decreased massively and I started to feel emotional. I finished the one months supply and decided I couldn’t do it anymore. Each day I was taking the pill I was regretting it and my mind was basically trying to tell me to stop I knew it wasn’t good to keep doing it and stopped completely. But I had no idea the damage that I had caused. After stopping I literally lost control and had never felt anything like this before in my life, I felt intense all the time and could never relax I felt like something bad was going to happen constantly, I couldn’t sleep I just had these horrible intense feelings of panic and I couldn’t understand anything. I felt like everything and everyone was a threat to me and I couldn’t understand what had caused this. I ended up not being able to cope anymore and I wanted to end my life I had sent a message to my family saying goodbye and felt like I was looking forward to dying as I could finally escape my body. I tried to end my life twice but I was terrified of dying at the same time I couldn’t get myself to go through with it. After the first time I tried I had to be placed in a psychiatric hospital and the second time was even worse my family went through a horrible time because all I wanted to do was end my life. When I was in hospital I felt so intense they didn’t know what to do with me, I couldn’t speak to anyone all I was thinking about was not wanting to be here. When I eventually got out my girlfriend at the time wanted to try and be there to help me, I was lucky I had her because she was there for me. But the relationship didn’t last as over the next year my intense emotions started to go away and I felt like I couldn’t feel anything I had no emotion but I had no idea this was only the beginning. I had to focus on myself again, I started losing weight and began to eat a lot cleaner which I had done before this all happened and I started to feel a bit better. At this point my hair was also still falling out and was making me self conscious so I started using different shampoos to see if they could help my hair as I didn’t think they could do much harm. Then I thought about trying supplements, and this is where things started to get really bad. I had tried supplements before I took finasteride and never had any problems at all as my body knew what to do with them I never had any issues. I decided to take these again so I began taking vitamin D and fish oil to see if it would help my dry skin as I didn’t think it would do any damage to me as I have tried taking them before I took finasteride. I took them for only one day and felt like something wasn’t right, over the next few days I started to experience these unbelievable changes to my body. My body basically fell apart overnight I was sitting one night trying to watch TV and had this horrible pain in my right thigh it felt like the muscle had disappeared like my body was trying to get rid of it. My wrists began to feel freezing cold and numb and my veins were sore and started to disappear. My wrists basically shrunk within a couple of hours to the point where there felt like there was no bone left. They felt they were going to snap I couldn’t even hold my phone, my hands also got so much smaller and always cold that it feels strange to look at them and all the padding on them is completely gone, my hip bones basically disappeared that it’s left me in so much pain trying to walk. My hips are destroyed and are that small that my legs have became twisted and they are coming in the way. My neck is very thin and cracking all the time it hurts I can barely keep my head up straight, my shoulders and chest bones are cracking it feels like my body can’t support itself anymore I have to move very slowly. Wounds don’t seem to heal or they take a very long time to try, I fell a year ago and cut my leg and arm they haven’t healed properly and seem to reopen when I’m going through a crash which is terrifying. It’s like my skin is falling off my bones. My skin is extremely thin and soft and my body odour has disappeared completely. My hands used to have a rough texture now they are completely changed and I don’t recognise them. My hair is dry and doesn’t produce any oil. This has been going on for a year since I tried those supplements and recently it’s gotten much worse. My wrists have basically nothing left and my veins have almost disappeared and are extremely thin I can barely see them. I have trouble breathing and have a heavy tight feeling in my chest this has become a lot worse recently as I have became extremely sensitive to smells I feel like I can’t breath properly sometimes. My arms and legs are shorter I’ve lost a lot of height I don’t recognise myself in the mirror at all. I can’t feel any emotion whatsoever complete flatness and I’m struggling to remember things. I can’t feel hunger there’s no connection to my gut and brain my body doesn’t know that it’s ate food whenever I eat something I don’t feel like I’ve ate anything no matter how much I eat my body doesn’t recognise it and doesn’t use the food to make new cells and I just get bloated and feel numb. Whenever I eat food it’s hard to swallow as if it gets stuck and I feel like I’m going to choke every part of my body is smaller including my mouth. I’ve recently developed horrible pains in my intestines. I’ve lost all the connective tissue on my body there’s nothing left. I’m underweight for my height and age my body has almost nothing left but whenever I try to eat I can’t feel anything. I constantly feel thirsty but when I drink water there’s no effect my body isn’t signalling properly that I’ve drank water. It feels like my body is attacking itself and the scariest thing recently is my veins have almost disappeared on my wrists and I have no feeling in my arms as if my body doesn’t know that it’s my own arms. Doing basic things is becoming near impossible like trying to get to the toilet is very hard because I have to move very slow to avoid my hips feeling like they are going to break. It’s difficult to make food as there’s no strength in my arms they have become very short and thin. I’m also extremely sensitive to a lot of things now, the most being smells and chemicals. I haven’t washed my hair or body with anything apart from water for 4 months because I’m extremely sensitive to any type of chemicals even things like laundry detergent can crash me when I put my clothes on I’m extremely sensitive to it I have to wash my clothes with only water now. My body doesn’t know what to do with any kind of smell it can’t signal properly it doesn’t have the ability to know what to do anymore it just thinks everything is a threat and it starts to eat away at itself and I can’t do anything about it I just have to sit here let it happen. The last time I used shampoo it contained tea tree oil and peppermint and it literally almost killed me I couldn’t move for days my body basically fell apart and my neck bone felt like it was going to snap I thought my head was going to fall off. But the strange thing is whenever I use shampoo or even hand wash my symptoms improve for hours or even days and then it crashes me and my body attacks itself and I can’t feel anything. I have to be careful what I touch as it could crash me easily to the point where I can’t physically move. Sometimes I can’t even reach for the TV remote as it’s too difficult to and I have to move very slowly. I’ve recently been having muscle twitches that just happen randomly mostly in my legs and feet when I’m lying still my the muscle in my leg will start shaking. The crazy thing is I can still get an erection if I think about sex but when my testicles are hurting it feels like they are going to disappear and I can’t feel anything down there properly I don’t think this is anything to do with testosterone or dht as my blood work came back normal, it’s some sort of signalling issue in my body. I have read it’s something to do with androgen receptors but I don’t understand it all. I also got tested for celiac disease because my gut issues but it came back negative which makes me think it’s not that this condition makes you sensitive to gluten or other foods it’s that my body doesn’t know how to signal anymore and handle those types of things It’s the same with chemicals and things that I touch my body doesn’t know what they are because something is not working properly. People say the human body is an amazing thing and will repair itself but something has been severely damaged or switched off in my body and it doesn’t know how to function now. I feel like I could have wrote this out a lot better but I’m terrified and I don’t want to die like this. With my veins disappearing it feels like this could be affecting my heart muscle as if my body isn’t signalling to the heart that it has to work and pump blood as every other muscle in my body is almost gone, my body is giving up and there’s only so much it can take with the constant changes it’s having to go through because the damage has been done. It’s all related to some sort of signalling issue my body doesn’t know how to work properly anymore because something has been severely damaged. The only time I have had any type of relief is when I had any type of flu or sickness bug my body seems to change signalling and I can feel things again but then it comes back once my body has returned to normal, it always comes back. I also noticed improvements when I done water only fasting, I done a 4 day water fast and during it I noticed some things would improve as if my body was trying to fix whatever had been damaged but with the state my body is in now that’s not possible anymore as there’s barely anything left of me. I want my life back I want to live again, I feel like I’m trapped in a nightmare I keep waking up into and there’s no cure for this. Every time I wake up the first thing I think about is suicidal thoughts and that I can’t take another day of this it’s unbelievable that this can happen to anyone. It hurts trying to write this out as there’s no strength in my hands to hold my phone, I feel like I should be crying writing this message but I can’t feel anything. I don’t want to die like this and there’s nothing I can do about it
Want to extend my sympathy man im so sorry this nightmare has been dealt to you. The depths this can hit are still not fully grapsed by many and situations can go from bad to worse to all out war. I know it is hell there are a few who get effected this bad unfortunately I believe it was the vitamin d that tipped the scales. a few users have crashed extremely bad off it. The wheels are in motion for a treatment tho so please stick here. Feel free to pm me man if you need someone to talk to and hang in there. We are here for you
Very sad that we continue to see people landing on here.
Your story is particularly upsetting, repeated exposure to 5aris is correlated with severity.
On a positive you are early on in the journey. Even though every day feels like hell you still have time to recover, the odds are on your side.
Please report your sides to the MHRA. Every single one of them. Not enough sufferers do this, this is in part why we this condition remains unrecognised. Please do not underestimate the importance of doing this. It takes minutes and could save lives.
Keep hope my friend.
There are lots of good guys on here.