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Thread: Forum seems a bit slow

  1. #11
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    I agree but I think it is symptomatic of the system. I have had three definite diagnosis over the course of six years and as my symptoms have progressed they change.

    I have tried everything, being humble and not showing any self diagnosis to completely losing it and everything in-between and nothing changes.

    The worst was idiopathic facial pain having been told it was this every six months at a hospital oral medicine department over two years I presented myself now really swollen and he just said it must be rhinitis, or sinusitis I had, on their advice taken a lot of my teeth out that was as close as I have come to going postal!

    As I have said on here before I do not look like a Rosacean, I flush red sometimes in hospital firstly because I am nervous but mostly because I am used to being cold outside etc and it's so damn hot in their rooms, they are in shirt sleeve in middle of winter!





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  2. #12
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    do you use modern medicine methods, scientifically proven methods and they do not work or almost do not work?
    How is it possible ?

    The latest western medicine.
    Methods scientifically proven and supported by pharmaceutical corporations

    And there are no or almost no effects?
    Somewhere is a problem that contemporary man does not understand how the body works and can not restore balance.

  3. #13
    Senior Member dryad's Avatar
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    Quote Originally Posted by przemek View Post
    do you use modern medicine methods, scientifically proven methods and they do not work or almost do not work?
    How is it possible ?

    The latest western medicine.
    Methods scientifically proven and supported by pharmaceutical corporations

    And there are no or almost no effects?
    Somewhere is a problem that contemporary man does not understand how the body works and can not restore balance.
    I use modern western medicine and it works great. But my mother who has the same condition was misdiagnosed, ignored, and given (charged for) useless treatments for over 40 years and only got progressively worse. A lot of people who suffer from rosacea struggle to access doctors who have any experience or knowledge of rosacean diseases at all. Rosacea is not one condition, yet we are often treated as if we all have the same aetiology. In fact rosacea is just a descriptor that means "red face" and there are different things that can cause a person to have a red face. You wouldn't treat all people with stomach pain the same way, but all red faced people are usually treated the same way. Yes, it works for some but not for the others.

  4. #14
    Senior Member ladycappuccino's Avatar
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    Based on my personal experience, I can say that dermatologists are completely defenseless when it boils down to rosacea. They don't know much about it. They think it is more of a cosmetic issue than a real issue. "It is just a little bit of redness that can be covered up with make up". They disregard the problem, they generalize it, they don't want to dig deeper, they only scratch the surface, they don't care about "solving a mystery". Antibiotics is all they have, because this is all they want to have at their disposal. You say "leaky gut", they say "it does not exist". You say "histamine intolerance", they say "there's no such thing". You say "candida" or "IBS" or "SIBO", they say "oh yes, it is a very trendy thing right now, do not fall into this trap". For them skin problems are skin problems and they refuse to embark on a gut-related discussion. They always know better. They have no time to hear you up. They do not listen.

    For me an ideal dermatologist would be a rosacean himself/herself. He/she would know then how painful and debilitating this disease can be.

  5. #15
    Senior Member dryad's Avatar
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    Quote Originally Posted by ladycappuccino View Post
    Based on my personal experience, I can say that dermatologists are completely defenseless when it boils down to rosacea. They don't know much about it. They think it is more of a cosmetic issue than a real issue. "It is just a little bit of redness that can be covered up with make up". They disregard the problem, they generalize it, they don't want to dig deeper, they only scratch the surface, they don't care about "solving a mystery". Antibiotics is all they have, because this is all they want to have at their disposal. You say "leaky gut", they say "it does not exist". You say "histamine intolerance", they say "there's no such thing". You say "candida" or "IBS" or "SIBO", they say "oh yes, it is a very trendy thing right now, do not fall into this trap". For them skin problems are skin problems and they refuse to embark on a gut-related discussion. They always know better. They have no time to hear you up. They do not listen.

    For me an ideal dermatologist would be a rosacean himself/herself. He/she would know then how painful and debilitating this disease can be.
    I'm sorry you've had this experience, it sounds like the same experience my mother has had. There are exceptions (like my dermatologist who also did a pathology residency and therefore is not limited by 'skin is skin') and I know I'm lucky, but I have to say if you have a medical doctor telling you to cover up your disease with makeup, that sounds like medical malpractice to me.

  6. #16
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    Quote Originally Posted by ladycappuccino View Post
    They always know better. They have no time to hear you up. They do not listen.
    So very true.

    I once went to a dermatologist appointment and expressed delight that the cream 'Elidel' (something I had suggested myself) had caused a significant improvement. But instead of putting two and two together and realising why this might be, my derm roared with laughter. I had mispronounced the name 'Elidel' and made him think I was saying 'my skin has been so much better since using the Illegal'. He thought I'd been smoking hash!

    If the numbskull had actually listened to me, and not been so keen to make a pathetic joke at my expense, he might have remembered that Elidel (Pimecrolimus) works by changing the skin's immune system. Its application was obviously decreasing my allergic reaction to the harmful substances I was unwittingly using on my face (years later confirmed by a skin patch test).

    He blithely then wrote me a prescription for the hardcore drug Roaccutane for 'acne rosacea'. And so, it was yet another missed opportunity to come up with the correct diagnosis.

    I hear he's making a fortune from Botox and fillers these days!

  7. #17
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by davem81 View Post
    This is very sad but so, so true in my experience.

    I've lost count of the number of gp's/derm's I've seen for this condition over the years - certainly it's well into double figures - but there have been few if any who have ever shown any inclination toward actually investigating and/or solving the mystery, even when I tried to 'tempt' them with clues such as that my condition started overnight, as if it were some kind of infection. I remember one who literally said words to the effect of '...your file says rosacea, the textbook says antibiotics for 12 weeks...' ...and I'd travelled to another city to hear that!

    This is especially frustrating for me now as I'm coming to the conclusion that there is a strong possibility that I have infact been mis-diagnosed all these years, and that had more care and attention been shown to me in the early days, I might have been spared years of suffering.

    I think somebody posted something recently about improving the care for rosacea sufferers - certainly this would be well overdue in my opinion, and this particular issue would be a great place to start.
    This thread has changed from 'why is RF slow?' to 'improving the care for rosacea sufferers.' For over 14 years I have tried to gather rosaceans into a rosacea patient advocacy non profit organization with now over 1200 members, yet the members do not want to do anything. Rosaceans tend to want everything done for them and volunteering is simply not on the agenda. Rosaceans love how the NRS spends most of its funds on private contractors and about ten percent on rosacea research and continue to donate to the NRS. They don't care that the AARS spends most of its money on conventions and very little for rosacea research. There simply isn't any other non profit organization for rosacea. RF is fading away too with very little activity and certainly doesn't spend any funds on rosacea period. To me that is the sad situation that rosacea patient advocacy is not something rosaceans really want to do anything about.
    Last edited by Brady Barrows; 26th December 2018 at 06:41 PM.
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  8. #18
    Senior Member dryad's Avatar
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    I feel bad posting as often as I do, I think it's probably bad for just a few people to dominate discussion as it ends up being just about those people's specific situations which crowd out other situations. I try to keep my personal experiences to my own threads. I have been doing an elimination diet for over 4 months to try to show others how foods affect rosacea, unfortunately I didn't get a lot of participation from others but I'm still continuing on the off chance that anyone cares. I am open about the drugs I try and I share photos, even though neither is pleasant. I live on a remote island in the Mediterranean so I'm not sure how much volunteering you expect from me although I have volunteered to be the tranexamic acid guinea pig (which may or may not have been how I ended up in the hospital in November).

  9. #19
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by dryad View Post
    I feel bad posting as often as I do, I think it's probably bad for just a few people to dominate discussion as it ends up being just about those people's specific situations which crowd out other situations. I try to keep my personal experiences to my own threads. I have been doing an elimination diet for over 4 months to try to show others how foods affect rosacea, unfortunately I didn't get a lot of participation from others but I'm still continuing on the off chance that anyone cares. I am open about the drugs I try and I share photos, even though neither is pleasant. I live on a remote island in the Mediterranean so I'm not sure how much volunteering you expect from me although I have volunteered to be the tranexamic acid guinea pig (which may or may not have been how I ended up in the hospital in November).
    It is wonderful that you volunteer to post here at RF and I welcome as many posts as you want to post since there are so few who post here at RF as this was the actual theme of this thread started by jrlhamcat2 on 12/18/18. For example, here are the stats for today (you can view this on the home page - scroll to bottom):

    Currently Active Users
    There are currently 269 users online. 5 members and 264 guests
    Most users ever online was 6,653, 5th October 2015 at 04:46 PM.
    Brady Barrows, ellobo, jrlhamcat2, Momof, Ryangarnier

    The Rosacea Forum Statistics
    Threads 27,647 Posts 210,709 Members 37,519 Active Members 205
    Welcome to our newest member, jenben03

    You can see that while there are over 37K members only 205 are active (however vBulletin defines an active member). The RRDi has over 1200 members and less than a handful post. This thread was originally about how RF has slowed down with activity. These statistics shown above prove it. Where have all the rosaceans gone? The forum style media is not as popular as the new social media style format, obviously since rosaceans are still posting (somewhere else), but not as much here anymore. RF at one time was the hot spot for rosaceans to post. Not anymore, but way more than the RRDi forum. Rosacea Support Community (the same owner, David Pascoe) has even less activity than RF (which David Pascoe owns as well). David Pascoe is paying for both RF and RSC forum style media which comes out of his own pocket (however, David does have sponsors for RSC which probably helps pay for most of the expenses of both forums), thus making RF and RSC both free for members (see SITE SPONSORS on David's home page). Kudos to David Pascoe for keeping RF going despite waning activity.
    Last edited by Brady Barrows; 26th December 2018 at 09:20 PM.
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  10. #20
    Senior Member ladycappuccino's Avatar
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    Quote Originally Posted by Brady Barrows View Post
    This thread has changed from 'why is RF slow?' to 'improving the care for rosacea sufferers.' For over 14 years I have tried to gather rosaceans into a rosacea patient advocacy non profit organization with now over 1200 members, yet the members do not want to do anything. Rosaceans tend to want everything done for them and volunteering is simply not on the agenda. Rosaceans love how the NRS spends most of its funds on private contractors and about ten percent on rosacea research and continue to donate to the NRS. They don't care that the AARS spends most of its money on conventions and very little for rosacea research. There simply isn't any other non profit organization for rosacea. RF is fading away too with very little activity and certainly doesn't spend any funds on rosacea period. To me that is the sad situation that rosacea patient advocacy is not something rosaceans really want to do anything about.
    It's a utopian (although a beautiful) thought for me to try to reunite all the rosaceans spread all over the world and turn them into a global patient advocacy non profit organization. We live on different continents and in different realities. However, it is definitely not too much to ask for a more proactive stand from the patients, regardless of what their infliction is. Unfortunately, one eager patient/rosacean is not enough. Actually, the whole bunch of sufferers is not enough without doctors willing to foster a dialogue with their patients. I know more about rosacea than an average dermatologist and, believe me, I am not saying this proudly, this makes me profoundly sad. I am still looking for a good doctor. In the meantime, I keep on educating myself and posting my experiences here.

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