I don’t appreciate it at all. I’d been here several times before restarting propecia…that should not have happened and it shouldn’t continue to happen. Known triggers should be posted prominently for everyone who visits this site to see before they do any other research.
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I understand it was avoidable, even though there are many stories of worsening after repeated use on here, an upfront warning on accessing the site could prove invaluable
Sorry just want to ask do you think those 3 celebs died as a possible result of our conditions???
I mean Michael Jackson looked like deaths door in his last years.
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100% I have that level of deterioration and I’m also in touch with a couple of guys who are no longer active on here who are very ill. The 3 celebs in question never made the connection, imagine!!! Don’t let this put the fear of God in to you as they were throwing everything at it to try to dampen down their symptoms most of which worsen things.
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Shit, it’s infuriating!!
I know an article recently came out about the Artist Avicii that took his own life a few years back in his 20s and the article said he had a addiction to alcohol and prescription drugs. The end of the article mentioned ‘acne medication’ which has got to be accutane.
In some photos he clearly has acne scarring so it’s obvious he suffered with acne that was then cleared up.
It’s all speculation, but something just doesn’t add up apparently he had severe pancreatitis which probably wasnt helped by the meds and alcohol but anyway he ended up taking his life. But was it just pancreatitis that he was suffering from who knows I suspect that actually he may have been suffering from a more similar condition to our own.
People who are unwell usually do there all to get better. Pancreatitis sounds just like a shitty but normal health condition you just have to try and overcome. But taking your life over it. Idk just makes me think the situation was worse than they report.
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I expect he was taking other stuff to try to deal with the hellish state of accutane. His last public photo showed distintinctjve muscle loss / loss of masculinity. Tell tale signs of androgen deprivation. Some would argue pancreatitis.
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I woke up after 2 hours last night which is normal for me. However I was met with extreme pain across my right hand and knuckles I can only describe it like being hit by a hammer. The pain seemed to source from the centre of the joints then across the tendons. THen it started in my knee caps, backs of legs , elbows, shoulders, eyes and skull. It’s the most extreme pain I’ve suffered to date, unbearable no where to rest from it. My ear drums feel like they are going to explode with pressure. I feel nausea immediately after eating food then have the onset of chronic bowel pain, ot feels twisted. My back end bleeds everytime I go to the toilet. Lesions have appeared on my face along with psoriasis. I’m extremely weak and my muscles have finally stopped responding no matter what. I kicked a ball for my son and that simple action resulted in some kind of injury. I can’t put any weight on my leftt foot Every thing I eat is like poison to my systems. I can’t bear being around anyone of anything . I feel emotionally numb… My whole face is in pain, my neck and eye muscles, jaw feel like they are having the life sucked out of them. There is an immune disorder which targets collagen. It feels like every associated part is being attacked. This disease seems to systematically destroy and disintegrate, then progressively moves onto other parts. (Autoimmune traits) This really feels hopeless. Drs have closed thd door on me. I don’t know how much more I can take of this absolute unrelenting torture. My autonomic system is also totally fucked. I’m freezing all of the time with multiple disfunction. I’m at a loss with this and the lack of help This world feels like a self centred uncaring bad place. Unfortunately for me I was one of the earluer ones who developed active and progressive pfs. The cavalry will be too late, its just a case ofwhen j reach my breaking point which I honestly thought I’d reached 3 years ago from when I’ve become so much worse
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I’ve had another two nights of hell, I woke up
after 1 hour, wide awake with extreme pain everywhere. Then last night the same thing happened. Cant make a fist with either hand, my shoulders feel like I’ve had a high impact trauma and my knees are burning, feet are tender and unstable. While I lay awake I started having dreams without being asleep!!! I also had slide shots of memories passing through my mind, like a film clip being played. It’s as though my whole sleep state is fucked up. When I walked into another room my vision was behind ie in the previous one and not in tune with where I was physically. This has happened before. It’s as though my brain is breaking apart. I’ve noticed my resting bicep has almost halved in size in the last few days, the same goes for my calves. My physical frame is increasingly in more and more pain with stabbing in the tissues throughout the day. My neck crunches when I move it. Popping and cracking everywhere. I lost the feeling in my toes and fingers for a couple of hours yesterday. My gums are split again this morning, I have a constant bubbling of tissue/inflammed and I have a permanent dull ache across the full jaw as it recedes, new dents have appeared in my face. There is so much more going on it really feels like things have progressed recently. It’s like the cycle of symptoms are increasing with time. What I noticed very occasionally years ago has become the norm. It feels like dementia, parkinsons etc but as per, the Dr has ruled everything out. Regardless multi system atrophy is going on. Where this stops!!! My ticker keeps hitting a sprint for no reason and my BP is off. The endo stated 2 years ago that an event could be the end game.
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This is awful Ry. Not always easy but try not to predict your future with such catastrophe.
Even when you don’t feel speak life over yourself.
Love you long time my gorgeous brother 
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So your story is the story of a strong and proud guy killed by pharma war machine in the early years not knowing pharma stuffed your body with well known poison but they didn’t inform anyone.
For now nearby 25 years MSD killed your right for a good life. And now they all, all the criminal liers enjoy there life and they give a shit on your maltreated soul.
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Well today has brought new lows. I haven’t been able to lift my shoulder for three days now, today the other one has started, I can’t put a shirt or coat on, breathing in is extremely painful across the ribcage, my eyes have become extremely dry, the redness has been commented on, it feels like there is sand in them. I still can’t make a fist . I’m unable to stand up straight because of shoulder and rib pain. This is on top of everything else I deal with daily… It really feels like any mini returns to my shitty baseline have all but gone. The physical pain is worse than what I ever experienced with RA which is classed as a pretty damn severe disease. But with that you at least get some treatment. This is something else it really is. Unabated suffering. I’m just getting it documented that’s all.
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Sorry to hear it mate.
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My friend and doctor told me with my 130 kg sitting in the chair all-day without sport, depressed, distressed and weird I have a good chance of a stroke, heart problems, bone break and Muscle weakness and a good chance getting bedbound with 60 years. That as a well trained total healthy 59 year old best ager. After one year of that nightmare I m done. Maybe I m much weaker than you.
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Pain is a subjective experience that is imperceptible to others. Because of this, people who are experiencing pain often have their pain downplayed by others around them, including nurses and doctors. This invalidation can show up in a few different ways. In some cases, an outsider acknowledges a person’s pain experience but does not believe that it requires support, and in other cases, an outsider might not believe that the pain exists at all.
Importantly, having one’s pain invalidated can lead to stigmatization and hear lies one of our biggest problems/challenges. It can be as bad as the disease itself.
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I have the exact same thing along with random songs constantly playing in my head which drives me crazy. Impossible to explain this to a normal person.
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Its insane people look at me as if I’m a nut job, it feels like brain damage but when I used to get reprieves most things would return to normal so I guess it can’t be! It’s very unerving, inflammatiin, receptors, who knows.
Interesting that you say that because I intend to use your medium writeup to explain it to someone.
I am glad you can take use out of it even if it’s so grim. It’s just the unfathomable reality of this disease at the severe end of the spectrum.
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My left shoulder is still fucked. I can’t do anything with the arm. I had to lie on the couch last night with cushions around it No sleep at all, it’s since hit my left elbow, I couldn’t even put a dressing gown on. Hands are still bad as well as global pain elsewhere I believe serotonin and dopamine help with pain management and the lack of these may explain why it’s out of the park and at a level I’ve never experienced before. My eye has haemorrhaged again. Much more I could mention but I’ve managed to get an urgent appointment with rheumatology . See what they offer up as a min I’m hoping for predisilone pills and s return to tocilazumubab which did seem to suppres the cramping and severe pain / immobility problems I’m encountering No free lunches I realise these come with risks
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After 3 hours, many tests discussions I came away with nothing. The recent pain has been palpable I really don’t know how I can continue to take this level of punishment I pray for a reprieve that’s all I can do. The Proffesors registrar gave me a cuddle I could tell she felt helpless I’ve known her for over 20 years. On the way back to my car I was in tears. This just feels hopeless but I’ll continue for my son, myself all of us! despite how beaten I am!!!
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