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  • Forum seems a bit slow

    The forum seems to have quieted down quite a bit compared to how it was several years ago. Have most peopled moved somewhere else? There's the rosacea subreddit, David Pascoe's rosacea support forum -- anything else I'm missing?

  • #2
    Originally posted by jrlhamcat2 View Post
    The forum seems to have quieted down quite a bit compared to how it was several years ago. Have most peopled moved somewhere else? There's the rosacea subreddit, David Pascoe's rosacea support forum -- anything else I'm missing?
    I've been wondering about the same thing. I am not sure whether they moved, at least not to the forum you mentioned which is - to my mind - even slower than this one.
    Maybe (closed) facebook groups?
    I really wonder how Peter, Melissa, Corina and many more have been...

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    • #3
      This has been happening for some time now, probably around 2014 or 2015. Rosaceans are somewhere else, probably Reddit, Facebook or some other social media. I wrote a post about this here. To me the bigger issue is how volunteering has dropped. This is happening globally.
      Brady Barrows
      Blog - Join the RRDi


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      • #4
        Originally posted by jrlhamcat2 View Post
        The forum seems to have quieted down quite a bit compared to how it was several years ago. Have most peopled moved somewhere else? There's the rosacea subreddit, David Pascoe's rosacea support forum -- anything else I'm missing?
        I reckon it's slow on here because people are gleaning lots of information from the Internet where they find out for themselves that they don't have Rosacea after all. Lazy dermatologists love to use the catch-all diagnosis of Rosacea without testing for other skin complaints first.

        There are Facebook forums which are great at educating people in the substances which cause skin problems that look exactly like Rosacea. Such as:

        Balsam of Peru and Fragrance Contact Allergy
        Eczema, Contact Dermatitis and Patch Testing Alliance
        Methylisothiazolinone Victims
        Methylisothiazolinone Allergy Support

        I feel very strongly that all patients with a skin disease that looks like Rosacea should automatically be sent for a 'skin patch test' to eliminate the possibility of contact dermatitis. I've been to loads of so-called 'top' derms all over the UK and every single one of them got it wrong!

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        • #5
          Originally posted by Sally View Post
          I reckon it's slow on here because people are gleaning lots of information from the Internet where they find out for themselves that they don't have Rosacea after all. Lazy dermatologists love to use the catch-all diagnosis of Rosacea without testing for other skin complaints first.

          There are Facebook forums which are great at educating people in the substances which cause skin problems that look exactly like Rosacea. Such as:

          Balsam of Peru and Fragrance Contact Allergy
          Eczema, Contact Dermatitis and Patch Testing Alliance
          Methylisothiazolinone Victims
          Methylisothiazolinone Allergy Support

          I feel very strongly that all patients with a skin disease that looks like Rosacea should automatically be sent for a 'skin patch test' to eliminate the possibility of contact dermatitis. I've been to loads of so-called 'top' derms all over the UK and every single one of them got it wrong!
          also a lot of skin problems are caused by internal factors within the body itself i.e sibo , candida , hpolyri etc ... its easy to rule out topical problems with patch testing but a lot harder to nail down whats causing problems that arn't responding to that testing .

          my personal opinion is that almost - ALMOST ! all skin problems are related to the guts and digestion and the bodys internal balance and not contact derm as you suggest , but as i say thats just my opinion ...

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          • #6
            Every speciality has its basket diagnosis!

            Maxfax and Oral medicine have idiopathic facial pain that covers tingling burning and pain. Even had one try and convince me swelling was in with that too.

            Loads of idiopathic diagnosis in all the other areas of medicine which literally means of unknown origin which is what I feel Rosacea is.

            Basically if they can rule out what they can test for that's the rabbit hole they stick you in.

            I know people come and go but how many have totally won the battle loads of posts on here and the internet on advice and some may help some make others worse but no magic bullet.

            Everyone including me seems to have their own "pet" self diagnosis for me it's allergy or low level infection, some like Boris it's a systematic gut issue, others diet, others skin, parasite, mites, bacteria or autoimmune the list goes on.





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            • #7
              Originally posted by Andrew P View Post
              Everyone including me seems to have their own "pet" self diagnosis for me it's allergy or low level infection, some like Boris it's a systematic gut issue, others diet, others skin, parasite, mites, bacteria or autoimmune the list goes on.
              Absolutely, couldn't have said it better. I think we search for logic, meaning, to make sense of what is happening and why. In fact, there seem to be plenty of exceptions to every theory. I'm active on the forum because I'm still knee-deep in treatment. I imagine it would be boring if not actually offensive for someone in complete remission to be on here posting about how great their skin is all the time

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              • #8
                Originally posted by dryad View Post
                Absolutely, couldn't have said it better. I think we search for logic, meaning, to make sense of what is happening and why. In fact, there seem to be plenty of exceptions to every theory. I'm active on the forum because I'm still knee-deep in treatment. I imagine it would be boring if not actually offensive for someone in complete remission to be on here posting about how great their skin is all the time
                If I ever get shot of my symptoms I will be all over the internet and here, couldn't help myself!

                I think you have said it better to be honest I managed to get to 49 thinking modern medicine had an answer if not treatment for everything it was just my logical thinking.

                When my GP shrugged and said you would be surprised how often no one really knows it was quite a shock.

                My only caveat is I do not feel I have ever come across a consultant who cared enough to try and piece it all together.

                The huge downside is whoever you get yourself in front of only looks at it from within their speciality and normally will find something that kind of fits. Then once that's in writing on the GP system you are kind of snookered trapped in it.


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                • #9
                  I am extraordinarily lucky in that I happen to have a dermatologist who is also a pathologist (double residency) who is something of a prodigy when it comes to these things. I don't know how I got this lucky. I live in the middle of nowhere, and yet here she is. I don't know where I'd be without her. She has made me actually love my skin. But I still have work to do and I never forget that it can always relapse.

                  My father taught medical school for 40 years so I grew up knowing that doctors usually don't know what they're doing, that doesn't scare me. It's more of a shock to me when they do know what they're doing!

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                  • #10
                    Originally posted by Andrew P View Post
                    If I ever get shot of my symptoms I will be all over the internet and here, couldn't help myself!

                    I think you have said it better to be honest I managed to get to 49 thinking modern medicine had an answer if not treatment for everything it was just my logical thinking.

                    When my GP shrugged and said you would be surprised how often no one really knows it was quite a shock.

                    My only caveat is I do not feel I have ever come across a consultant who cared enough to try and piece it all together.

                    The huge downside is whoever you get yourself in front of only looks at it from within their speciality and normally will find something that kind of fits. Then once that's in writing on the GP system you are kind of snookered trapped in it.

                    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.
                    Last edited by davem81; 21 December 2018, 10:53 AM.

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                    • #11
                      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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                      • #12
                        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.

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                        • #13
                          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.

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                          • #14
                            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.

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                            • #15
                              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.

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