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Thread: Twenty years with this suffering - Advise appreciated

  1. #1
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    Angry Twenty years with this suffering - Advise appreciated

    Greetings everyone, I just found this board almost by chance and who knows, maybe it can be a life changing experience (for the better!)

    My story started in my early twenties, and being approaching my fourties, I find myself with a condition that has been with me half of my life, has changed it for the worse and has limited me in many ways (never having a relationship just being one of them)

    During the early days, I went to many doctors, dermatologists, followed their advise only to find that my condition was getting worse and worse. One of my last visits was to a doctor (who was known through some family friends) who had the "amazing" idea to give me corticoid cream which turned my face swollen, festering and itching like hell. After this experience I didn't want to have anything to do with traditional medicine, as it looked more like a guess work rather than real science. With these doctors, over the years I passed through many different treatments, including taking thalidome, and none proved to work at all. The diagnose at that time was "seborrheic dermatitis"

    After this, I turned to more "natural" approaches, including homeopathy. I know many people (and doctors!) will criticise going that way, but what else can you do when doctors are helpless in dealing with your condition?

    That didn't go nowhere either, so I started looking in the web to see if I could find any information. That took me to a website that sold natural products and whose theory was related to the gut (I don't remember the precise name, but it was about the gut being permeable and allowing toxins to get to the blood stream). This company was in California so I ordered some products to deal with a possible candidiasis (another of the theories) and taking some suplements (I only remember spirulina due to its terrible taste). This was around 2003.

    Fast forward today (as I don't want to bore you with so many details). New country for some years and again trying to find a solution through different doctors. One of the lasts suggested me that I could have both (acne) rosacea and seb dermatitis (!) and suggested me some sessions of IPL (ie. laser). Have to admit that after a couple of sessions (3 IIRC) I don't notice that much flare-up, but besides that any other improvement has been non-existent.

    I'm attaching two pictures for you to see. Please do note that at the time the pictures were taken I wasn't doing "so bad". Some time ago I realized that after shaving with a cream one dermatologist gave me, my skin looks better at least for a while. I shall take some more pictures once this effect goes away, so you can see how it looks in normal conditions. The brand of this shave cream is "noxzema".

    Please note my forefront and how shiny it is. This is one of the things I hate more about my condition (besides the redness and general swollen look I usually have) and I'd really like to know how to get rid off this oily look.

    Is this rosacea, seb dermatitis, both? One thing I always hated from dermatologists was not being able to tell me what it was with good certainty, being their answers "this is a difficult thing" (!?!?!)

    Would appreciate any comment, aid or support. It's been 20 years suffering this, but it is still a pain in the b*** to wake up and see my face in the mirror

    I realize that this condition may not be cured, but I think that at least I could expect looking somewhat normal, couldn't I? Is that too much to ask for dermatologists to try at least?

    Wish you a nice day, and sorry for the rant.

    2013-07-09 16.59.06.jpg
    Attachment 1898
    Attached Images

  2. #2
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    Default Two other new pictures of today

    Hello again,

    Some weeks ago I restarted swimming after many years not doing much exercise. Since a few days though, I'm noticing my skin is itching more and has some more redness than usual. Again, with my condition I always have a hard time figuring out the real reason: weather, food, etc.

    I'm attaching two new pictures just taken after waking up. The itching is getting a bit annoying so I'm thinking of getting back to buying thermal water spray, something I managed to avoid over the last 10 years due to the itching disappearance over these last years.

    2013-07-10 07.02.35.jpg 2013-07-10 07.02.56.jpg

    Again, any comment that may help will be very appreciated.

    BTW, sorry if my first post looked like a kind of attack towards derms, but I just hope you understand my frustration in getting little positive results with my condition over the years, and wasting a ton of money in consultation, products, treatments, etc.

    Kind regards

  3. #3
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    Default Quote

    Quote Originally Posted by daneel.olivaw View Post
    Hello again,

    Some weeks ago I restarted swimming after many years not doing much exercise. Since a few days though, I'm noticing my skin is itching more and has some more redness than usual. Again, with my condition I always have a hard time figuring out the real reason: weather, food, etc.

    I'm attaching two new pictures just taken after waking up. The itching is getting a bit annoying so I'm thinking of getting back to buying thermal water spray, something I managed to avoid over the last 10 years due to the itching disappearance over these last years.

    2013-07-10 07.02.35.jpg 2013-07-10 07.02.56.jpg

    Again, any comment that may help will be very appreciated.

    BTW, sorry if my first post looked like a kind of attack towards derms, but I just hope you understand my frustration in getting little positive results with my condition over the years, and wasting a ton of money in consultation, products, treatments, etc.

    Kind regards
    What you have got is you have lost the natural ability to sweat due to a switching fault in your sympathetic nervous system.

    You can try all you like to cure you skin but you will never win because you are treating the wrong thing.
    cure

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    Quote Originally Posted by drummond View Post
    What you have got is you have lost the natural ability to sweat due to a switching fault in your sympathetic nervous system.

    You can try all you like to cure you skin but you will never win because you are treating the wrong thing.
    Hello drummond,

    Thank you so much for your reply. You know, I sometimes had the suspicion that this could also be related to my nervous system. For example, I sometimes find myself tense even when being in a normal situation.

    Would you mind commenting about what options would I have, if any? Would there be any treatment for this, tests, etc? I'll try finding something on Google but any reference would be very appreciated.

    If this helps, I usually sweat quiet a lot in my body (chest, legs, armpits, etc) but when it comes to my complexion I do in some parts of my face, mostly those areas where there is no eczema (as you could notice in some of my pics, I happen to have some areas with normal skin followed by some areas of eczema). As far as I know this is "normal" with people having this condition.

    Kind regards
    Last edited by daneel.olivaw; 10th July 2013 at 10:28 AM.

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    Hello again,

    First of all, I'm sorry to add another reply to the thread, but as soon as I recall any detail that I find could be helpful, I just add it to a note in order to not forget about it in my next post. Hope you don't mind, but understand that in 20 years there are many things I tried, experienced, etc.

    Regarding the comment drummond made about the nervous system, there are some points I'd like to make:

    - As I said before, sometimes I feel like I'm in a tense state, even if the situation doesn't apply. For example, while being seated in front of the computer, reading, etc.

    - When walking around I usually keep a lost stare, sometimes I may even look like a robot. I noticed I made this habit when I started to suffer this condition. For years, I used to go with a walkman and just ignore as much as I could in my surroundings.

    - I usually avoid eye contact when coming across other people in the street. Whenever I talk to someone I can't help noticing their look and sometimes expression of disgust. Maybe this is a personal thought or not. I simply don't know.

    - I always had digestive problems. Actually, when these symptoms first appeared years ago, I used to eat "anything". In the beginning of my disease, the itching could be so bad that sometimes I could barely sleep at night, or woke up with my sheets having some blood (because of scratching). I also noticed that for some reason the itching would show up at night, but during day I was "okay"

    - Whenever I eat, I almost always need to drink some tonic or gas beverage (coke, etc) otherwise I feel some "heaviness" in my belly. With these drinks, I can digest (usually with some burping) more easily and feel better. I sometimes try avoiding these drinks and have infusions, but the feeling is not as good. I'm sure this is a clear symptom that something isn't right. Unfortunately, all derms I told this never cared much about this issue. They only concentrate in creams and lotions :-(

    - Besides this "rosacea" I also have acne. Last year with the last derm I did a treatment for 1+ year with roaccutane. I found I tolerated it pretty well (as far as I know, the dose wasn't that heavy, about 20mg twice and then three times a week) besides the usual symptoms: dry lips, ears, etc. Now it's been 4 months since I stopped the treatment (following derm direction) and besides some pimple and not doing that bad. It's the redness the problem that doesn't go away.

    - In the past, I used to medicate myself from time to time with "minocin" (oral minocycline) specially to keep the flush and pimples at bay. I even discussed this with some derms and they accepted as a possible work out (given that according to them, there was no solution to my problem)


    Please allow me to stress some points:

    - I may accept there is no cure to my problem. All I ask at least is being able to "look normal". I don't care if I need to medicate or do something else for a lifetime. After all, I've been doing this for 20 years and the results haven't been very awesome, as you can see in the pictures.

    - In twenty years I have tried many antibiotics, drugs, creams, etc. I'm a bit worried that my body or skin got so bad because of this that these sequels will not go away. I always did everything with the best faith and trusting whatever the doctors suggested me.

    - I'm considering getting back to a diet consisting of veggies, meat and fruits. I admit that I'm not a veggie or fruit lover, but I'll make the effort for some weeks to see if anything changes for the better. So far I've been able to eat almost anything, but maybe the body is starting to say to stop.

    - I'm also doing some excercising going to swim. I realize chlorine might not be the best thing but I haven't notice any issues after swiming. And given that I'm not allowed to sun bath, sweat, etc. etc. at least this is the least damaging thing I can do.

    Thanks for "listening", and looking forward to read your advise and comments.

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    A couple of other points:

    - Whenever I have some bad redness, if I get a nap or just sit and relax a bit, my skin gets a bit better. I presume this could be related to what drummond said about some nervous system problem.

    - Whenever I have some itching, it always shows up at night. This also applies to my skin. Usually, after waking up, it doesn't look so bad, but after a few hours it starts looking the usual way (bad)

    Anyway:

    After some reading, I found this interesiting post about using raw honey and coconut oil which I think I'll try: http://www.rosaceagroup.org/The_Rosa...in-coconut-oil

    Over these years I have tried many different treatments, always with the same result: lot of hope at the start and then facing the sad reality. For some reason it seems that my condition is unique and what works for others doesn't apply to me. Let's see how it goes with this one.

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    Hi, I'm sorry I can't offer much advice as I too, am seeking some magical cure for this horrible curse! But I want to say how saddening it is to read your story and your suffering. Please never let this condition make you ashamed to be a human being (such as adopting a lost stare), I wish I could give everyone on here a big hug as we all seem to need it. Remember, you are not alone, we're all here to find some peace and advice. Again, sorry if I was no help, I just wanted to say, don't lose hope and GOOD LUCK.

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    Quote Originally Posted by Baileey View Post
    Hi, I'm sorry I can't offer much advice as I too, am seeking some magical cure for this horrible curse! But I want to say how saddening it is to read your story and your suffering. Please never let this condition make you ashamed to be a human being (such as adopting a lost stare), I wish I could give everyone on here a big hug as we all seem to need it. Remember, you are not alone, we're all here to find some peace and advice. Again, sorry if I was no help, I just wanted to say, don't lose hope and GOOD LUCK.
    Thank you very much for your support Baileey, and needless to say, no need to apologise! Perhaps my story is sad, but this may also be a good way to vent my frustration and get some relief in exchange.

    Even though it's a painful path, I haven't given up hope yet. Sometimes I may feel devastated seeing no treatment works, but in the end, I always have the energy and determination to give something else a try. As I posted above, I just started with the raw honey + coconut oil to see how it goes. Maybe after the nth try something will work, who knows, but understandably I don't want to build my hopes up.

    Thank you again for taking the trouble to post, it does make a difference!

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    Default We sound similar in many ways

    I also am not looking for perfection-but more than anything to feel normal. I can also be tense for no apparent reason-it really bothers me. I do believe what the one poster said about sweating being a crucial part of our process that is somehow negated. I am currently in the Dominican Republic and it is very hot and humid here which means lots of sweating.

    What I have noticed-

    Some days are totally different than others. Some days I feel unnaturally warm and it becomes obsessive- I feel "repulsively sweaty and oily"

    Other days I feel sweaty but I realize everyone else does as well- and I don't feel unnaturally warm or "oppressed" by the heat.

    So why some days is there a difference- is it sleep, is it food, is it mental clarity.

    My theory is a bit of all of these-however, I believe if at the beginning of the day I do some sweating in the sun I lean more towards feeling normal and not so agitated. I have thought on this the last few days and today I am sitting outside now typing this in the shade-fixing to go put on my hat and swimsuit and lay in a chair and sweat.

    It is one thing to sweat self-conciously
    and
    another to sweat with freedom and the feeling that it does not matter

    Two totally different animals in my opinion.

    One builds up a frustration and the other releases it. Just my thoughts. I feel you though on the shininess and I just want to tell you that your pictures look like you do not have anywhere near enough of a problem for people to feel disgust or anything near that when looking at you.

    Anyway, time to sweat.

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    Default Hi daneel and A friendly disagree with Drummond

    Quote Originally Posted by drummond View Post
    What you have got is you have lost the natural ability to sweat due to a switching fault in your sympathetic nervous system.

    You can try all you like to cure you skin but you will never win because you are treating the wrong thing.
    Daneel -- this forum is full of info that will help you. It takes a lot of time to read so much
    Information and then choose the path right for you. There is a lot of evidence that rosacea
    Is connected to a faulty gut. I suggest plugging into the diet information. Good nutrition
    Is powerful ammunition.

    Drummond -- I'm just tossing a friendly disagreement your way. Sweating might be part of
    The problem; but I do not believe it paints the whole picture. This inflammation on our
    Skin is a result of other disorders in our body-- with sweat glands being only one of them. ( maybe)
    Perhaps it is more helpful to someone to offer more than just a sweating solution.

    Daneel-- your anxiety sounds like perhaps it is too intense? Perhaps evaluation by a Dr. For
    Counsel and/ or medication? Life can be happy EVEN WITH rosacea.

    Best to you!!

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