Help. Miserable Newbie.

[insomnia]

I recently was diagnosed with rosacea, and I'm having a hard time not thinking and worrying about it all the time. My family and fiance don't seem to understand at all why I should be upset by it. My symptoms aren't as bad as some people's get, but I do worry that it's just going to keep progressing.

I've had mysterious eye itching and swelling for years now, that doctors could never figure out, and chronic eye redness for quite a long time. Now I realize that it must have been rosacea for all that time. For the last few months my eyes have been driving me crazy...intense itching and grittiness that just makes me want to gauge my eyes out. It's bad enough that it wakes me up at night. I can't wear eye make-up and have had to stop wearing my contacts, which isn't really helping the self esteem issues.

I've flushed easily all my life, but it was getting the papules last September that made me realize I have rosacea. I saw a dermatologist and he put me on noritate cream and plexion cleanser, but I'm not noticing any improvement. The papules still just run their course. I have at least one or two a day (I know that's not as bad as some people get...but it's hard not feeling like it's just not fair...I just got old enough that my skin didn't break out anymore from acne, and now there's this).

I've basically stopped drinking alcohol, because I think it's a trigger for me. I'm really daunted by the long list of foods that are supposed to be triggers. Am I really supposed to give up chocolate and yogurt?!? I don't notice that I actually flush after/while eating anything other than very spicy foods, soups, or wine. Could foods still be causing a problem even if I don't notice flushing?

Is there a medication I should ask my dermatologist for instead? Are the oral medications (I saw Oracept advertised online) really safe? I really don't like the idea of taking antibiotics, but I worry that nothing else will work.

How can I get some relief from the ocular problems? From doing research online, it doesn't seem like there are many options. The eye problems are making me more miserable than the already upsetting postules...then when I read that stress is a trigger I just wonder if I'm on a stupid merry go round...

I have a hard time trusting doctors, because they're so often cavalier about their treatments...giving you things that can cause harm in the long run...misdiagnosing (I've been treated for pink eye once already). Any input you guys can give me would be amazing. I really don't want this to progress further, and it seems like it's a huge project to find the right treatment.

[moomy]

Hi Insomnia,

Sorry to hear that you are feeling so upset about your condition. I think a lot of people feel like this when diagnosed, I know I did.

However, most people who start to research rosacea begin to manage their condition and, in most cases, improve things. This forum is a great place for tips and ideas of things to try. I dread to think what i'd look like now if I hadn't stumbled accross this and similar sites.

There are lots of medicatons that can help, such as beta blockers, accutane and antibiotics. (although I've not tried these, just read about them.)

As well as oral medication there are also topical medicaitons that are very good for the spots... Metrogel and finacea can both help with spots. I have found metrogel very effective.

Lasers and IPL can help too.

A good make up has also helped me a lot. I currently use vichy dermablend which can cover anything.

As for eyes, it is recomended that people with bad occular rosacea see an eye specialist. Eye drops (withougt preservatives), warm compresses and cleaning can help. I have eye problems too so I know how you feel. I also take omega 3 and wear sunglasses.

I know it's hard when friends and relatives don't think it's a big deal... but others with the condition know it is and are a great source of support.

best wishes
moomy

[Melissa W]

Hi insomnia,

Moomy's right. There is so much you can do to help your situation. I know it seems overwhelming at first but just take it one day at a time.

I would recommend considering at least a short dose of antibiotics as this will alleviate your most troublesome eye symptoms. You could try a low dose so mainly you would benefit from the antiinflammatory effect and not suffer the antibiotic effect. Just a thought. Also use those preservative-free rewetting drops every hour! Moisturize those eyes.

Anyway, try to find a derm you feel comfortable talking to and one that doesn't rush you right out of their office.

Read through the threads that pertain to you and ask questions of the forum. As Moomy said it's a supportive bunch that has a lot of useful info.

Good luck and hang in there!

All the best,
Melissa

[Quench]

Hi Insomnia,

have you tried taking an anti-histamine for a month or so to see if your eye symptoms are caused by an allergy?

[claudia]

Welcome Insomnia!

I can sympathize with you...it's so hard for others to understand our distress!

Re: antibiotics --- don't be afraid to use them, especially while you're trying to get things under control. Rosacea is a serious inflammatory disease of the skin so once things are irritated it takes BOTH external and internal meds to help calm it down. When your skin is more calm (less redness and p&p's) you can then slowly lower the antibiotic to almost nothing. At that point it functions only as an anti-inflammatory and does not affect the rest of the body like an antibiotic (i.e. tummy distress).

External topical meds like metrogel help keep the skin from getting too irritated. You'll most likely need to use this kind of med or something like it forever and you'll have to use an antibiotic off and on. Lots of people bulk at that but hey, rosacea is a serious inflammation of the skin and I find it interesting that if we had such a problem elsewhere in the body we wouldn't hesitate to treat it longterm but somehow we've bought into this notion that rosacea operates like acne...that it will go away but it doesn't, it gets WORSE if not treated correctly and consistently.

I think that's the hardest thing for non-rosaceans to understand. They look at our skin and think it's like acne. They don't understand how embarrasing it is, how it itches and hurts, how upsetting it is to have to watch diets closely or avoid stress, etc etc

The only positive thing is that with time you'll find that the diet is very healthy so you'll look younger and feel better than most of your peers. Also avoiding stress teaches us ways to be more interested in our inner-selves and to explore more solitary pursuits (i.e. writing, yoga, walking, art, etc.).

After years and years of dealing with disease I now find myself making peace with it. I take my meds as prescribed and have given up the idea of discovering some totally natural method (...they never really worked that well anyway...). Although as my pharmacist says many of the usual rosacea treatments are very gentle to the body...actually antibiotics are not that artificial really. It's an interesting concept.

Hope this helps! Don't lose hope...your close friends and family will become more empathetic (...educate them about rosacea...) and if you are consistent with your treatment, ie don't stop when your skin looks better!!! --- then the rosacea won't get worse.

CV

[Gutterstars]

i have no new info i can offer up. but i can completely sympathize with you. i know EXACTLY how you feel. and i also have the eye problems too. it's so frustrating!!!
(if you ever find something that works for your skin...let me know or post it! it sounds like we are in a similar stage)

sarah