I am entitled to speak negatively about advice and information that can be mentally, emotionally (and yes) physically damaging to people. And that is all I'm doing. I was not saying that its dumb to reduce stress, for symptom management. I was saying its dumb (and potentially dangerous) to blame people's health problems on their own inability to relax.
Have you taken a moment to truly think about the ramifications of such a statement? How it can affect the psychological state of people who come here? The result of blaming everyone for their own health problems?
Do you have any idea why everyone here is so freaked out compared to people on the Isaacs boards? They have the exact same symptoms we do. Many times much worse. Their symptoms react just like ours do, to stress. Yet why are they so calm over there? Because they have a diagnosis. Because they know they are not at fault for what is happening to them. They aren't trying and trying and trying to adjust their brain and body, to attain a self-cure. A differentiation must be drawn between stress as a symptom reduction and stress as a "cause of BFS". I drew that distinction above, but maybe it was missed.
I will get "righteously angry" towards anyone who tries to tell people here that their health problems are their own fault. And that's all i was doing above. Telling people "BFS is just stress" is akin to telling them its their fault. Because of the damage this does to people psychologically, it should be condemned. This isn't about "respecting other viewpoints". This isn't a discussion on religion or sexual orientation. Yet even in the event that a religion hurts people, people are entitled to speak out against it. Even moreso with a neutral topic like medicine.
I speak from my own experience. And discussions with others here. Spending several months being told to just sit back and relax while "whatever this is" took over my body.... was a source of frustration and a lot of mental torment for me. Not to mention bad medical advice. Go look at my thread "SOMETHING IS NOT RIGHT"
viewtopic.php?f=4&t=18415 That was my worst day in the last 12 months. And not because of BFS. It was my worst day because of the indoctrination I got here that I was at fault for my own symptoms. That day was utter hell for me emotionally and mentally. Because of that "viewpoint". And it was wrong.
Saying "Something is Not Right" was my polite way of saying "This isn't benign. It may not be deadly, and it sure as heck doesn't look like ALS, but its not me. Im not causing this. I don't need to relax. Im not to blame. And my brain is all twisted right now because I bought into that nonsense, yet my thighs are ON FIRE!"
As you can see from Mario's response - basically telling me to stop researching the cause, and just "relax" - i reached a tipping point mentally and completely lost my sh*t on him. That's because I was sick and tired of being told this was 'nothing' other than my own doing. So destructive. So I feel bad for others here who fall prey to that thinking and end up in an endless cycle of unresolved symptoms, self blame, and a dead-wrong (lack of) diagnosis.
There are a thousand things this could be, and paraneoplastic is just one possible option. To tell people *not* to monitor for such things is such damaging advice that the ultimate price could be paid for it. Yet you want me to just say nothing. Even Greg at Mayo was run up for Paranepolastic issues. They gave him a full workup. Why? Because Mayo knows their stuff, and that is responsible medical advice, considering our symptoms. Telling people to sit back and chill out, because "General Anxiety Disorder" is the cause of their health problems, can be dangerous.
I think a lot of people here are tormented because they try stress reduction and it doesn't make this go away 100%. There are a couple people here who think General Anxiety Disorder *is* the cause of BFS. I think it is very important that people know that stress isn't the cause, and therefore reducing it wont be the cure. Why am I snarky and sarcastic about it? Because I think it damages people. I think it leads to frustration and dead ends, as people blame themselves for their "inability to just relax". This places the blame squarely on them for their health problems, and that is destructive advice.
I think I have already established with (literally) hundreds of posts that reducing inflammation, and stress, will help symptoms decrease. So Im not sure why I am even having to write this. But I will retain my right to speak out negatively towards the sentiment that everyone here is at fault for their own BFS. And that they need to just relax. That sentiment is idiotic in my book, and I will continue to sarcastically say so. But thanks for your input.
-Burger-