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Thread: It's too hard :\

  1. #1
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    Default It's too hard :\

    I'm pretty young, I guess but already my redness is really bad. It's not too bad when not flushing, but I flush soooo easily, I have to sit in front of a fan all day to just avoid it. The redness is spreading to my nose and chin I can see, when I flush they get really hot and red and my nose burns soo bad. I've tried everything, and success is something i've come to realise isn't ever going to happen. This condition is just too hard.

    I have nothing to hope for, it's a condition that only gets wose, I don't know how any of you guys deal with it, maybe mine is way worse though. Have any of you with really bad redness and/or flushing had any success or improvements? and if not, how do you deal with it?

  2. #2
    Moderator phlika29's Avatar
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    Please dont give up hope . My rosacea was at its worst when I was in my early twenties, I flushed almost constantly, didnt want to go out, had to use a fan all the time. But slowly I improved, with laser and medication and now whilst I still flush it isnt like before-not in intensity or duration.

    Whilst it might feel that you have tried everything perhaps you need to look at some of the medications that are outside the standard treatment box. What have you given ago so far?

  3. #3
    Senior Member bluesky's Avatar
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    Hi Steve, I have felt very similar to you also and still do alot of the time. Rosacea can be a really depressing condition and can be extremely debilitating expecially when you're dealing with alot of flushing. Anyway... on a more positive note, there ARE things you can do about it. There's various medications you can take- remeron, clonidine, propanadol and other beta blockers, which are all very helpful to quite a few people on this board when it comes to controlling and preventing flushing. Also there's lasers, IPL, Vbeam, and red light therapy too! All of these things can help with redness and flushing, also certain supplements and vitamins can help long term... the vitamin d thread seems promising, grape seed extract, pycgenol, probiotics etc. etc.

    I know how you feel though, I'm too very young, 18, yet I have terrible flushing and permanently red skin... not exactly allowing me to "capture my youth" as you can imagine. I have to stay in and be able to control my triggers and the temperature with AC, fans, etc and even with all that I still flush alot. Right now I'm on low dose accutane- I just started, mostly for acne and also dermatitis, but I'm making an appt. very soon to get prescriptions for remeron, clonidine, and also propanadol in hopes that it will help control some of my flushing because really, I think in theory if I can stop/reduce the flushing my skin will not be as red. I'm also getting my vitamin d levels checked and I take various supplements/vitamins. After I am finished with my accutane course next year I'll start with laser treatments and RLT.

    Also, there is a HUGE wealth of information on this board, and so many helpful caring people, and guess what, we are all in this together, and I bet you every single person on this board has felt the same thing, I know I have, that this is just too hard, I cannot deal with this etc etc. Buttt then I read the success stories and see others here who have improved and are controlling their condition, yes, with set backs and deterioration, but 2 steps forward 1 step back it seems, and that gives me hope. It seems everyone here kind of learns from each others experiments and trials and tribulations if you will. If I had just my dermatologist to depend on for learning and understanding this disease and the various treatment options well I don't know what I'd do, I might of jumped off a cliff by now, lol! All jokes aside though, seriously, do not loose hope, there is so much to learn and so much that you can do to help control and improve your condition. But I'm going to stop rambling now, this is way too long, seems to be a very bad habit of mine lol. Anywayyy, goodluck steven- don't give up- and I need to work on taking my own advice!
    Last edited by bluesky; 16th October 2009 at 08:23 AM.

  4. #4
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    bluesky,

    I have nothing to add to your wonderfully supportive post!

    Steve92,

    Wishing you all the success in the world on your journey to control rosacea.

    J
    SUFFER FROM NEUROPATHIC ROSACEA & OCULAR ROSACEA.


    *Vit D3,Theratears Omega 3.



    *LDN since October 2018.

    *REN skincare range. TARTE cosmetics.

    *Tried Clonidine, Moxonidine & Atenolol (None being taken at present ).

    *Yearly IPL treatments until 2009.

    * RLT Journey!" (Sept 09) **Using Britebox Revive..(Stopped ).

    * Use Optimel & Ilast cream for MGD Ocular rosacea.

    History of Hyperthyroidism (Graves) Lichen Planus (oral)
    PROUD TO BE DIFFERENT






    .

  5. #5
    Senior Member bluesky's Avatar
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    Thanks Judworth- I do need to work on taking my own advice though- lol.

    Even re-reading my post I know that our condition is always going to worse in our eyes than through those of others. In one particular sentence I said that I have "terrible" flushing... yet really I am not the WORST flusher in the world as I'm making it sound but still can get pretty bad. That aside what I'm trying to say is that basically our skin problems to ourselves are always going to seem like the end-all. Heck; I know I see alot of people here who post photos desperate for help for the state of their skin and I honestly at times am jealous of them and their skin- lol but to them it is extremely distressing, and I know that feeling all too well as I think we all do. But when we let it consume us and become our worlds as I know I'm guilty of doing- I think we just empower it further, and make ourselves worse off as stress and emotions are a top trigger for me along with heat.

    So, try to enjoy yourself Steve- don't let your skins state and flushing take all the joy out of life,- I know it's easier said than done, believe me on that- but don't make the same mistake as me, control your triggers, take the vitamins/supplements, the medications, get laser treatments etc., but that's all you can and SHOULD do, stressing and depressing just makes it worse! I've been dealing this for a year now- and when I look back at this past year the only real memories I have are of me alone with fans, and trials and errors with skin cares/medications and dermatologists, and being extremely depressed and emotional over my skins deteriorating state. I don't have all that many good memories, many fun times with friends and family etc. as I've let it kind of take over everything. Anyway, I'm going to stop typing, I've written yet another novel and in addition to that I'm getting emotional and feel myself flushing- grrrrreat- lol... but like I said before, don't give up!

  6. #6
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    bluesky,

    I am an emotional flusher & actually start to flush when I am happy & excited too!

    (How awful is that?).............however, I have come to learn that in the 7 yrs of having this
    disease "Misery is it's BEST friend", therefore I try to be upbeat when I can.

    My heart goes out to youngsters who are suffering, we live in an 'image based society',
    but thankfully, rosacea is usually worse in our eyes than to the onlooker!

    Judworth
    SUFFER FROM NEUROPATHIC ROSACEA & OCULAR ROSACEA.


    *Vit D3,Theratears Omega 3.



    *LDN since October 2018.

    *REN skincare range. TARTE cosmetics.

    *Tried Clonidine, Moxonidine & Atenolol (None being taken at present ).

    *Yearly IPL treatments until 2009.

    * RLT Journey!" (Sept 09) **Using Britebox Revive..(Stopped ).

    * Use Optimel & Ilast cream for MGD Ocular rosacea.

    History of Hyperthyroidism (Graves) Lichen Planus (oral)
    PROUD TO BE DIFFERENT






    .

  7. #7
    Senior Member nat007's Avatar
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    Excellent posts Bluesky!! Hi Steve, I've been where you are now, and it's a dark place, I agree. But like Bluesky says, there is hope.
    My own history (you'll recognize it Bluesky, just posted it to you as well, lol)

    I know how debilitating and depressing rosacea can be. My complete university years were ruined by this condition. I was only on uni for half a year when this happened (few days of cortisoncrème use triggered full blown vascular rosacea) and my social life (which was very good before, out in the town 3 nights a week, partying and all) went down, down down.... All I wanted was to 'fix' my skin and I tried all the creams, vitamins, supplements etc available in order to fix things. With no results, only an empty bank account (even more depressing). I didn't want to go out, my skin got more and more sensitive for anything, also make up and creams, and I didn't want to come in a club looking like a clown... I always had very pretty skin and was used to looking impeccable, and I couldn't accept having such bright red cheeks and feeling so burned and flushed, so I rather staid home. Most depressing times of my life. But at some point my skin began calming down again. No obvious reason, only me having a new boyfriend and feeling better about myself. Then an IPL treatment made my rosacea much worse again. I wrote about it on the forum at the time, January 2005. It send me right into rosacea hell with unstoppable flushing. I couldn't go to the shops, I couldn't leave my fan and coolpacks for 10 minutes and even then I was bright red and flushed. I was really at my wits end then and even considered suicide, so hopeless I was. I thought this would be an ongoing battle without any relief.
    My misery actually lifted a bit once I went to the UK, to see a dermatologist in London (dr. Tony Chu), who prescribed me medication (what Bluesky mentioned, clonidine, propranolol and mirtzapine, together with an antihistamine I later added myself) and Dr. Crouch, who did a series of test patches with his laser and IPl devices and it became clear my skin was too sensitive for it at that time and it makes matters worse for me. (Both docs are extremely nice and friendly and knowledged about rosacea by the way). But the medication made my rosacea so much more bearable and for a few years my skin was much better again, paler, less flushing attacks, I could go out again (always hat and cool packs and ice cubes though) and eat more things without exploding.
    While I always thought that rosacea is indeed a constant progressing condition and things would only spiral downwards. But this is just not true. I have experienced this myself the last years and I hear it from Dr. Chu, who has really 'hopeless' patients since he gets the worst cases generally, and he often finds a way to turn things around for the better. My skin got better during the last few years and not worse.

    The downside is that now I've stopped with most of my meds, especially the loss of mirtazapine is very hard on me. The last week my flushing is really getting worse again and I couldn't even sleep from the burning and flushing last night. It's definitely the absence of the mirtazapine. So these medication can help control it and even send you into remission for some, but they are temporary and no real fix. But IPL is neither for most, you need to maintain thay as well (most at least). So perhaps you can start to try to accept that this is what you have, that you shouldn't look for miracle wonders to cure it, but to means to calm it down as much as possible, either with medication or lasers/IPL and at least with a healthy lifestyle (healthy diet, no alcohol, spices and such). And perhaps soon there will be even better treatment options, but right now there are plenty options to help you calm things down. Dr. Chu knows patients who were very bad when they came in his room and are now into remission and have continued with there normal lives.

    Stay positve, find out what worsens or improves your rosacea and indeed, try to find distraction and relaxation as well. Try to do some social and enjoyable things every week, you'll find that feeling less miserable and focussed on your skin and rosacea will give you extra energy to battle your demons!

    Best wishes Natalja

  8. #8
    Moderator Melissa W's Avatar
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    Hi Steve,
    As you can see lots of people here have gone through similar emotions as you have and have obtained relief through various treatments and lifestyle changes. So it is 100% hopeful for you for sure.

    Personally, when I was first diagnosed there were many dark days for me. I was flushing and burning all of the time. And I mean for days straight. There was no relief whatsoever. I was scared and my derm was even unable to help me at all besides the advice to just ride it out. I would literally come home and just cry. I did feel hopeless and full of despair. Then I found this wonderful forum and I realized that for one I was not alone and for two there were many treatments I could try that might help. It was an immense relief and weight off my shoulders as I realized I was not going to have to become a hermit because seriously I didn't know what I was going to do and I didn't know where to turn. Through the RF though I was able to bring treatment options to my dermatologist and also try things on my own.

    The best treatment for me at first to relieve the awful flushing and burning was VBeam and I had about 4 treatments the first year. Then I started RLT which was a helpful adjunct. I was also on antibiotics throughout (Solodyn then Oracea) as I also have the papules with my flushing and burning unfortunately. These treatments provided me much relief as well as adjusting my diet to exclude spicy foods and alcohol and avoid temp extremes as best as possible.

    When I am outside in the colder weather I protect my face with a gaitor or scarf and it helps immensely when I then go inside to a warmer environment. Which now brings me to my next suggestion for you. You wrote you have a fan on you much of the day and believe me I know how you feel as I still need a fan at work sometimes as they can really overdo the indoor heating at work! Try not to depend on the fan as much if possible as that sets up the possibility of rebound flushing which I think can be a huge problem. This would be a very helpful article for you to read regarding this issue:
    http://www.ausci.com/ROSACEA%20BOOKLET%202009.pdf

    There are countless treatment options so my advice is to take a deep breath and take it one day at a time. Sometimes when we look too far ahead we can feel overwhelmed. This is a manageable disease and the key is just to go slow, try one or 2 new treatments at a time, be patient, be persistent and be kind to yourself. Do things that make you happy and give you joy as that is important to continue doing. Life does not stop while you are finding the treatments that will work for you. Surround yourself with people who care about you and can be supportive of you to help you through. And we are always here as well for support and info.

    Hang in there Steve. Things will get better. I was where you are as were many people here. And we can tell you from experience you will find relief and you will be able to put these dark and hard days behind you.

    Hugs,
    Melissa

  9. #9
    Member RatherBeSkating's Avatar
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    You sound just like me a couple months back.

    Melanotan, clonidine and tanning have given me my life back, there's thread all over about it, most people scaremonger and tell me I'm gonna turn inside out or something, but you know how I felt at least

    Good luck

  10. #10
    Senior Member Michael_V's Avatar
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    Steve,

    I know just how you feel. I am having a hard time not staying in that dark place myself. I had very nice skin all my life. Was even considered a decent looking guy. Lots of smiles from the ladies and so on. Then five months ago this disease came out of nowhere and changed everything. Permanent redness, frequent flushing, hard nodules (that have thankfully been controlled with low dose doxy) ... and no self-esteem. To top it off, I got a bit of seborrheic dermatitis, probably from the (high dose) doxy I had been on. Man, when it rains...

    Not sure what to tell you. I am new to this, too. It is hard. But you are not alone. And I am encouraged by the number of people who have achieved significant remission because they never lost hope but instead kept learning and experimenting and finding what works for them.

    Here are just a couple of threads you should read:

    http://rosaceagroup.org/The_Rosacea_...ad.php?t=18412

    http://rosaceagroup.org/The_Rosacea_...ad.php?t=18117

    Don't give up! Better days are ahead!

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