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  • antwantsclear
    replied
    Originally posted by park View Post
    Interesting to see this - I have the same thing and have done for years. Hands especially get cold very easily and start going red and blue. Ears get hot very easily and be burning for 1-2 hours
    Medicines like gabapentin can help with the warm ears and hydroxychloroquine. However, they will not help with the cold hands and could make that worse (Raynaud's).

    Leave a comment:


  • park
    replied
    Same here

    Interesting to see this - I have the same thing and have done for years. Hands especially get cold very easily and start going red and blue. Ears get hot very easily and be burning for 1-2 hours

    Leave a comment:


  • michaeljh1965
    replied
    The best option is to get insurance and see a doctor

    Leave a comment:


  • TSW1988
    replied
    Originally posted by RedMage View Post
    Did you try to do the microelements like zink, iron etc, and vitamins D3, H blood tests?
    I feel like this maybe the reason behind those cold hands and feets.
    I've made other tests to exclude mention earlier dieseases like ANA and they show that there is nothing abnormal.
    I have been given further Vitamin D tablets

    Leave a comment:


  • RedMage
    replied
    Originally posted by TSW1988 View Post
    I am like this, red ears, rosy cheeks with a little heat and then cold hands.
    Did you try to do the microelements like zink, iron etc, and vitamins D3, H blood tests?
    I feel like this maybe the reason behind those cold hands and feets.
    I've made other tests to exclude mention earlier dieseases like ANA and they show that there is nothing abnormal.

    Leave a comment:


  • TSW1988
    replied
    Originally posted by RedMage View Post
    I wonder if anyone else besides me has these symptoms. Apart from Rosy cheeks from Rosacea of course, I have very often cold hands and feet, even when it is generally warm in the room. Additionally, often appear very red ears or one ear often. Maybe this symptoms can direct me into the problem cause.
    I am like this, red ears, rosy cheeks with a little heat and then cold hands.

    Leave a comment:


  • antwantsclear
    replied
    This sounds like a combination of erythromelalgia and Raynaud's syndrome - two conditions that often co-exist. The extremities get either too warm at times (erythromelalgia) and/or too cold (Raynaud's). A specialist in erythromelalgia can help you with this. There are not that many but the Erythromelalgia Association has a directory for UK and US doctors in this field - See Physician directory under Resources link at link below.
    https://erythromelalgia.org/

    There are a number of medications that can help with these issues - it may be hard to balance the right medication for the two conditions - but the fact you have the two conditions co-existing will help to select the right medications too, as there is a range of options for erythromelalgia.

    Leave a comment:


  • RedMage
    replied
    I was at the rheumatologist to check what could be the cause of my cold hands and feet and problems with numbing joints in my fingers. They told me to test for Vitamin D3, CRP C-Reactive Protein, RF Rheumatoid Factor, Uric Acid and ESR.

    All the results were okay but vitamin D3 levels were below normal. To be expected due to the cloud season and my reluctance to expose my facial skin to the sun as it causes reddening rapidly. I read about the symptoms of vitamin D3 deficiency and the symptom was autoimmune diseases (rheumatoid arthritis), which in a way is starting to affect me.

    Funny because it follows that it is not a symptom of a Cause causing Rosacea, but the cause lies in the way of life caused by Rosacea. Like a secondary disease caused by myself. I saw an article where it is said that Vitamin D3 strengthens Rosacea. Vitamin D induces keratinocyte cathelicidin overexpression, which then initiates a pro-inflammatory cascade. So supplementing this vitamin could end up bad for my face, but again not taking it can make the symptoms of cold hands and numb fingers worse.

    Leave a comment:


  • Brady Barrows
    replied
    Originally posted by Eileen66 View Post
    I was pointing out the coincidence that a lot of people who have rosacea also have Raynauds type symptoms. I value the advice on this forum and I don't consider anyone on here is just complaining for the sake of it. I, like most people on this forum, have been to several dermatologists and been told many different things so I think even the best minds out there are struggling with the origins of rosacea. I have to admit, I wouldn't even know how to begin setting up an advocacy group or raising the huge amounts of money that would be needed for further research so for now I will rely on the social media groups that help me try to deal with this disease.
    I am just lamenting that rosaceans don't want to do anything about investigating rosacea in a united effort and instead prefer to rely on 'fellow rosaceans' to defeat the rosacea beast. RF has a search tool that beats any social media group search since the 'posts' in social media groups, i.e., Facebook, Reddit, Instagram, etc., are not categorized in any logical order and is scattered throughout the social media platform. The rosacea data in RF and the RRDi platform is the older, established, 'forum' platform that isn't as popular as the social media platforms and contains many, many years of rosacea data. What I meant about 'complaining about rosacea' is if you do a cursory browse of some of the large rosacea social media groups (Facebook, Reddit, etc.) most of the discussion is centered on 'Is this rosacea?' questions and 'What do you think about this treatment for rosacea?' and not on any real investigation of the cause of rosacea or really any deep dive into rosacea.

    So, I spent some time using the search tool at the RRDi and simply typed in 'Reynaud' and got some results and was stimulated by your post above to show you what a deep dive into this can do and hope it stimulates you into doing more research. I didn't use Google or any other search tools, but you may be on to something if you continue your search. Wouldn't it be nice if more rosaceans did a similar deep dive search and shared their findings in a logical category? And is asking one dollar from a rosacean too much to ask to sponsor a clinical paper on this subject? I don't think so. But getting enough rosaceans to agree that investigating Raynaud and rosacea is the subject that should be sponsored is another matter, and how would one go about it? Well, I am trying with the RRDi. Have fun storming the castle! By the way here are my search results in my investigation, just for you.
    Last edited by Brady Barrows; 18 November 2020, 06:31 PM.

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  • Eileen66
    replied
    Originally posted by Brady Barrows View Post
    The vascular theory on the cause of rosacea was popular around the year 2000, however since then, the more popular theories currently are the immune system dysfunction theory and the inflammatory theory. There is some interest in connecting rosacea to the gut/skin/brain axis. That is why it would be beneficial if rosaceans could ban together into one cohesive united patient advocacy group and support their own independent rosacea research. You would think this would happen but rosaceans are not interested in trying to unite in such an endeavor and prefer to mostly post in social media groups complaining about it or asking, 'Is this rosacea?' to a social media group composed of rosaceans. You do still sometimes find papers connecting rosacea to a vascular disorder but they are now few in number, if any.
    I was pointing out the coincidence that a lot of people who have rosacea also have Raynauds type symptoms. I value the advice on this forum and I don't consider anyone on here is just complaining for the sake of it. I, like most people on this forum, have been to several dermatologists and been told many different things so I think even the best minds out there are struggling with the origins of rosacea. I have to admit, I wouldn't even know how to begin setting up an advocacy group or raising the huge amounts of money that would be needed for further research so for now I will rely on the social media groups that help me try to deal with this disease.

    Leave a comment:


  • Brady Barrows
    replied
    Originally posted by Eileen66 View Post
    I also have this , I have always said I have "bad circulation". Mum and gran had the same thing and my mum had rosacea so I have assumed that it's all connected to our messed up vascular system. Just another part of the very frustrating puzzle.
    The vascular theory on the cause of rosacea was popular around the year 2000, however since then, the more popular theories currently are the immune system dysfunction theory and the inflammatory theory. There is some interest in connecting rosacea to the gut/skin/brain axis. That is why it would be beneficial if rosaceans could ban together into one cohesive united patient advocacy group and support their own independent rosacea research. You would think this would happen but rosaceans are not interested in trying to unite in such an endeavor and prefer to mostly post in social media groups complaining about it or asking, 'Is this rosacea?' to a social media group composed of rosaceans. You do still sometimes find papers connecting rosacea to a vascular disorder but they are now few in number, if any.
    Last edited by Brady Barrows; 17 November 2020, 09:39 PM.

    Leave a comment:


  • RedMage
    replied
    Now that I have taken out private health insurance, I have no fear that I will go bankrupt going to doctors of various specialties. That's why I am now visiting more and looking for answers. Next on list are an endocrinologist and a cardiologist.

    Leave a comment:


  • Eileen66
    replied
    Originally posted by RedMage View Post
    I wonder if anyone else besides me has these symptoms. Apart from Rosy cheeks from Rosacea of course, I have very often cold hands and feet, even when it is generally warm in the room. Additionally, often appear very red ears or one ear often. Maybe this symptoms can direct me into the problem cause.
    I also have this , I have always said I have "bad circulation". Mum and gran had the same thing and my mum had rosacea so I have assumed that it's all connected to our messed up vascular system. Just another part of the very frustrating puzzle.

    Leave a comment:


  • RedMage
    started a topic Cold hands & feet & red ears.

    Cold hands & feet & red ears.

    I wonder if anyone else besides me has these symptoms. Apart from Rosy cheeks from Rosacea of course, I have very often cold hands and feet, even when it is generally warm in the room. Additionally, often appear very red ears or one ear often. Maybe this symptoms can direct me into the problem cause.
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