Hi all, I have spent the night (2 hours of sleep again) dealing with sharp pains in my heart as well as in my left arm. My heart has been beating at about 95 bpm at rest since my second crash when it used to be much lower.
Does anyone here deal with heart pain?
I had a second crash like you in June 2022 because of rhodiola (only three pills) and I developed new symptoms very similar to yours. In my latest laboratory tests ANA and Ena antibodies were slightly positive (all this is worrying, for me) I improved, but I still did not return to my baseline. The only thing you can do is wait, if it can be advice, I am doing an anti-inflammatory diet that is very good for muscle/joint pain. Lactobacilli for constipation and soothing herbal teas for stress and anxiety (I do not want to take drugs) for the heart, I have accelerated heartbeats, but sometimes they improve.
Thanks for the info Lady, much appreciated.
How are you holding up physically?
My body is able to get up, to walk, I don’t feel much physical pain (except during the period of pre-menstruation: it will definitely be the hormones) but the muscles are no longer there, I am tired, dry body skin…my mind suffers a lot, I feel confused, I often have headaches…only in the evening things seem to fade a bit (why? I do not know) . Torture, but we must resist. We must always fight even if it is very difficult.
Mornings are the worst for me (although I only sleep 1am-3am atm). Evenings tend to be better for sure. But most of the time it all still feels like a waking nightmare. Agreed, we must persist no matter how hard the struggle.
Hi, when u smell ammonia how was your anxiety from 0 to 10? U also talked about sinusitis. And you also are fighting hormonal changes. All these things (anxiety, sinusitis, hormonal changes) can alterate your perception of smells
Sry for my bad english. I wish u the BEST <3
Hey, thanks for your message. I believe the smell was due to a phenomenon called “Phantosmia”. I also had if happen after a brain scan after my initial fin crash although that lasted much less as long. It’s apparently exceptionally rare… doesn’t surprise me at this point.
“This is called phantosmia, from the Greek words phantasm (meaning illusion) and osme (meaning smell). It’s an exceptionally rare condition in neurology. My doctors say that this can occur in relation to brain injuries, strokes, seizures, schizophrenia, Parkinson’s disease and other neurological disorders.”
Remarkable. I’ve been experiencing phantosmia since my last crash. I searched for it here, and nobody in all PFS history had ever written of it.
Mine has a sickly sweet smell, stronger sometimes than other. My wife can be six inches away and cannot smell it at all. Only I smell it.
Perhaps this is worth a new thread, maybe others have had this and not connected the dots. Jim
I also had/have phantosmia and i read other msgs in this forum talking about this (ammonia smell/less smell, etc).
I just crashed 3 weeks ago from dutasteride. Seems this trouble with smell Its subsiding. I was also taking xanax first days (i wake up gaspering for Air at night cause of anxiety and also had palpitations and heart pain induced by my anxiety )and found that xanax can alterate smell.
I think that It can be for my case:
-anxiety (i’ve read that can cause phantosmia, with chemical/ammonia smells and my Psychiatrist confirmed that)
-sinisitis (also bad smells)
-kidney problems provoques ammonia breath(i also have some times high urinate frequency). But i had two Blood tests the first week when i crashed and carnitine was in range (but i Will haber hormonal/basic Blood tests again)
-xanax (It was stronger after using xanax).
-hormonal changes
I had various visits with medics and no one was worried at all and thinked about brain damage (even pshquiatrist)
I think that Your taking the most pesimist view. Thats not good for anxiety my friend! If Its long term effect in brain why subsides?
I wish you the best my friend.
This condition is truely insane, isn’t it?
Our society is completely idiotic. This entire situation really makes you realise how obtuse and conformist most people are. While growing up we learn about the Soviet Union, North Korea, Nazi Germany as if they were fundamentally alien societies governed by people completely unlike anyone in a position of power in our own society. Without sounding hyperbolic, this situation teaches you that your average person is perfectly happy to just be a cog in the machine who follows mandates and protocols from above without ever thinking critically. Even when it would cost them absolutely nothing to investigate an issue like this for themselves. We have numerous mainstream media articles from the likes of Haaretz and Reuters, thousands of patient reports, a 7 year study from Baylor using patient biopses, leading scientists who acknowledge this disease, hundreds of suicides. What more do people f******* need to say “gee, yeah this powerful endocrine disrupting drug modelled on genetically flawed pseudo hermaphrodites might not be such great news”?
I can hear the nurses coming with the meds. There is no way I am taking anything but I believe they have the legal right to force them. Still, absolutely no way I’m taking anything. This is no way to treat a human.
I’m sorry. I don’t have any advice but to do what it takes to get yourself out of this and in a situation where you can try to educate your parents and the people who are subjecting you to this mockery.
We have a document outlining the current body of literature pertaining to PFS: https://static1.squarespace.com/static/602016517dc49320d38bccfb/t/6116921d24f47b05ebf776d2/1628869176924/PFS+Letter+to+Healthcare+Providers.pdf
Hopefully, they haven’t sunk so low to dismiss legitimate evidence of this condition.
Xxxxxx
Stay strong, Balph.
I’ve been admitted to a psych ward too 2 years ago (I asked for it myself actually), but I quickly realised that 1, they could not help me and 2, once you’re “in”, it’s very difficult to get “out” (they diagnosed me without proof, and then saw everything I said as proof of that diagnosis: “you have body dysmorphia!.. But it happened overnight… Yes, it happened acutely because you were probably obsessed with it… But I wasn’t obsessed with it at all… Then it’s just your mind playing tricks on you because you have body dysmorphia.” gtfo man)
My advice is to keep telling them calmly and clearly in simple terms what happened to you. Do not make the mistake of talking too emotionally about it, because they will think it’s OCD, or depression or whatever.
How are you doing Balph? I Hope you can get out of there as soon of possible.
Just got off the phone with Balph. He’s still in the psych ward against his will. In an hour and a half a doctor will go to his ward and consult with him. I hope nothing is forced on him. Australia operates differently and you can be “sectioned” against your will and be forced to take medication.
Thanks for the update. I Hope the same as you. I pray for him he seems such a nice guy.