feeling really overwhelmed and at a loss..sorry.

[squirrelgirl6]

Hi all! I've posted on here a few times now...my story began 5 months ago when my rosacea started and the journey seems to have been years long...not 5 months long! I can't remeber what it's like not to have painful burning skin...the derms don't listen to me. First one was a total idiot and said I've ruined my skin and there's no hope!....2nd diagnosed seb derm and drugs.....they didn't appear to help much....then he diagnosed rosacea (well I could have told him that!!!!) and gave me drugs!! Couldn't tolerate them...so now it's another wait to see him AGAIN! Oh the joys......
I suffer with other illness (M.E/CFS) so my immune system is basically screwed and am housebound the majority of the time. But all I can think about is my skin now. It burns, burns, burns...red, itchy blah blah. I've taken the advice alot of you have kindly already offered. I just feel so hopeless. Also, I feel incredibly overwhelmed at the amount of advice/help/treatments/things you could try/things not to try/things that have helped some/things that made others worse.....it's exhausting!!!!!
I come on this forum every day and read so much to learn more and end up more confused and upset than ever ( not by the members as you are all amazing! ) but just the mare that rosacea is.
I can't wash my face. I can't wear makeup anymore. I can't even dye my hair as it made it a zillion times worse!!!! I look like ****!!!
Yeah, I know it aint the end of the world etc etc. Put it into perspective......but thats easier said than done when it's affecting you.
I'm so scared ALL the time. If I can't tolerate the treatment (mainly coz I'm so intolerant to drugs) and I can't tolerate topicals....how will I ever get better? I can't cope with burning and pain and misery for ever. I no longer see people (except my family) as I'm so self conscious. I used to be so confident and love life...now I feel the opposite. My life is so restricted anyway due to my M.E., makeup and my hair and looking good was something that I prided myself on. It helped me cope with how ill I felt and made me feel 'normal' like all my friends who are healthy and well. At least I was fine on the 'outside'. I know it's not whats on the ousdie that counts.......but.
Apologies for the negative rant!!!! I just needed to vent as have been so upset, alone and not knowing what to do.
Best go n' try n' chill.......Thanks for listening to me folks. Biggest hugs. Squizza xxxhi:

[drums]

Hi all! I've posted on here a few times now...my story began 5 months ago when my rosacea started and the journey seems to have been years long...not 5 months long! I can't remeber what it's like not to have painful burning skin...the derms don't listen to me. First one was a total idiot and said I've ruined my skin and there's no hope!....2nd diagnosed seb derm and drugs.....they didn't appear to help much....then he diagnosed rosacea (well I could have told him that!!!!) and gave me drugs!! Couldn't tolerate them...so now it's another wait to see him AGAIN! Oh the joys......
I suffer with other illness (M.E/CFS) so my immune system is basically screwed and am housebound the majority of the time. But all I can think about is my skin now. It burns, burns, burns...red, itchy blah blah. I've taken the advice alot of you have kindly already offered. I just feel so hopeless. Also, I feel incredibly overwhelmed at the amount of advice/help/treatments/things you could try/things not to try/things that have helped some/things that made others worse.....it's exhausting!!!!!
I come on this forum every day and read so much to learn more and end up more confused and upset than ever ( not by the members as you are all amazing! ) but just the mare that rosacea is.
I can't wash my face. I can't wear makeup anymore. I can't even dye my hair as it made it a zillion times worse!!!! I look like ****!!!
Yeah, I know it aint the end of the world etc etc. Put it into perspective......but thats easier said than done when it's affecting you.
I'm so scared ALL the time. If I can't tolerate the treatment (mainly coz I'm so intolerant to drugs) and I can't tolerate topicals....how will I ever get better? I can't cope with burning and pain and misery for ever. I no longer see people (except my family) as I'm so self conscious. I used to be so confident and love life...now I feel the opposite. My life is so restricted anyway due to my M.E., makeup and my hair and looking good was something that I prided myself on. It helped me cope with how ill I felt and made me feel 'normal' like all my friends who are healthy and well. At least I was fine on the 'outside'. I know it's not whats on the ousdie that counts.......but.
Apologies for the negative rant!!!! I just needed to vent as have been so upset, alone and not knowing what to do.
Best go n' try n' chill.......Thanks for listening to me folks. Biggest hugs. Squizza xxxhi:

All you need to do is just stop eating fat. It does not cost a thing to stop just give it a try.

[bailey0397]

Just wanted to let you know i am going through the same thing and feel the same way you do, exactly. I know this probably doesn't help the situation but sometimes it's just good to know that someone else can at least relate to what you are going through. Many people have been able to control their rosacea on this forum and I know it is confusing and frustrating but don't give up hope. I can not tolerate topicals either they just make things worse for me. I would suggest just washing your face with water only, and not too much. Try to do as little as possible to it. There is hope and Im sure you will get relief.

Best wishes,

Bailey

[Driven]

All you need to do is just stop eating fat. It does not cost a thing to stop just give it a try.

At first I thought this was a joke.

You really should reword that. You're stating that not eating fat will cure rosacea - is there a single legitimate study showing that? Even if it were true, fat is an essential part of the diet. You can't just stop eating it.

Personally, I eat a lot of fat, a lot of dairy, and a lot of complex carbs (including wheat), and I'm doing well. Some kinds of fats are triggers for some people, like omega 3 and 6. There are many causes for rosacea symptoms - saying that all fats are bad for all rosaceans is just plain wrong.

[Melissa W]

Hi Squizza,
I am so sorry you are feeling like this console:
I know how overwhelming and frustrating this is and I just want to convey that even though the situation seems impossible and scary it is not hopeless. You will find relief though it feels like it is taking forever.

I cannot tolerate topicals either but I have found help with VBeam and red light therapy and Oracea. Some days are good some are not as good but I take it one day at a time. When I am feeling down and overwhelmed I remind myself that this flare will not last forever and I will be OK.

I'm sorry that I cannot remember the details of what you have tried and what you haven't but if you wouldn't mind repeating them maybe we can come up with some treatments you should put on your to try list. The only real defeat is in giving up so as long as you persist you will find relief! And please don't listen to any doctors that are so unhelpful and uneducated. Just keep looking till you find great doctors you can surround yourself with for your various conditions. And you need support from your loved ones as that is an important part of staying hopeful I think. I vent to my husband and friends when I am down and it really helps. Plus you always have us! sidehug:

Sending big hugs and good vibes your way!

Melissa

[roz]

Squizza--

Just wanted to say , hang in there. You def. are not alone. As another poster said she is going through much the same right now. I too am dealing with a number of issues incl. autoimmune. So..I know it is not easy.

With a good derm that you feel that you can talk to , I think you may feel that at least you two are working towards a solution. I think the right dr. for you can make a world of difference. Do you feel that you have found the right derm?

I know you are having trouble with topicals...me too. But, don't give up.

I can see how reading the board can be overwhelming too....so many ideas and not knowing if anything will ever work for you. I think all this takes some time to get a handle on.

With the extreme reactivity of your skin, you are going to need to go in baby steps. Introduce a single change slowly and see how it goes over some time. And, really examine what you are now doing ...see what irritants you are introducing in your body, on your skin. Watch what you eat and drink and apply to your skin.

I would think first thing is to be sure to cleanse your face and moisturize without hurting yourself...I am still working on this as it is all a trial and error type of plodding along.

I know some here have read the Clear Skin Diet and I found The Skin Type Solution interesting. Though I didn't find my cure...I did learn some things . Maybe a little reading about skin care and issues may be helpful and give you some ideas.

Roz

[squirrelgirl6]

I just wanted to thank all of you that have replied to me post and for all your support. I appreciate everything you've said. I won't give up! It's not an option.
In reply to some questions asked:

I don't think I've found the right derm but in my area they are rare as hens teeth and as I'm so sick I can't travel further a field to the major cities of the UK. The derms I've seen have been as local as I can get and as there are only 2...I'm kinda stuck. They are both seemingly very 'old school' and NHS doctors just don't give you any time. It's 5 mins...then you're out with a REALLY long wait till the next appointment.

Re. cleansing/moisturising without hurting myself....well, this is not an option. I haven't cleansed or moisturised since February when all this intolerance started. I simply wipe my eyes in the morning with mineral water. That's it. I was a Liz Earle girl and have used her products for years. However, now even the Cleanse and Polish makes my skin angry! My derm said I will never be able to use products again. I did start to tolerate a little C&P recently....then BAM!!!! I couldn't anymore. GRRRRRRR.

I have looked into clonic irrigation having read something about it on here. I have a colonic therapy centre near me and enquired about it. As my issues are more than just roasacea etc. it may be of some benefit. Is on my'do do' list for the future.

I'm seeing an immunologist/allergist next month to see if allergies etc are playing a part.

So, I am doing the best I can which is hard having very limited energy and feeling so sick all the time because of my M.E.

Thanks so much for being such a great group of people. You give me hope and a boost in spirits to keep trying. Bless you. sidehug:

[bailey0397]

Just wanted to say that your derm telling you that you ruined your skin is the stupidest thing I ever heard. Did he think that would help? Remember the skin and the body in general has an amazing ability to heal. It is so much more helpful to focus on healing even though I know that this is easier said than done. Try and hold on to those thoughts and hang on to hope. Hang in there!

[squirrelgirl6]

Bailey, thank you for your message. It's very kind of you to give your support and words of encouragement. It does help alot. I live alone and have so much other illness to deal with awell as all the problems with my skin so it is very overwhelming for me. But, I am doing my best and am really grateful for all the support I have had here and the members are just so kind and really do help keep you going.....Thank you smile: Hugs, Squizza. x

[bailey0397]

sidehug:

[Judworth]

Hello Squirrelgirl6,hi:

I too feel so sorry to hear your story;I have had rosacea since 2003 and my flushing

appears to me 'emotional'.............so it can be almost impossible to control.

I did see my GP (who at first gave me a cream for allergies as she said in her 12 yrs of

practising she had only ever seen ONE patient with rosaceamad1:), the cream burned like

crazy & I searched the net and diagnosed myself.

I eventually got referred to a derm, he said it didn't look too bad and prescribed me anti-bi's

which I couldn't tolerate................that was me with GP's & Derms!mad1:

Since then, I have taken one small step at a time, at first everything caused a flush so it

was so difficult to rationalise anything!

I started with my skincare, found a cleanser & toner that was bearable and stopped the

wine! Foods don't appear to be much of a trigger (apart from the obvious spicy one's).

I had six IPL treatments (which really were a Godsend for me) and gradually the severity

of the symptoms subsided.

I don't have many of the pustules, I do have ocular rosacea and take quite a lot of extra

vitamin supplements.

I know that having an existing auto-immune disease makes life even tougher (I have

hyperthyroidiosm) and being female hormones play a huge role in my flushing activity.

I recently bought an inspiring book "Joy-Full" by Georgie Holbrook ( and holistic guide

to self-healing); she basically reminds you how to be good to yourself and use the bodies

own self-healing resources.

One thing that I did take on board was to stop vocusing on the 5% of my body that was

diseased (myblush: face) and be positive about the large part that wasn't.

I wish you well my friend, rosacea is a frightening & often lonely journey, but with sites

like this we all have support.sidehug:

Judworth

[smart]

I just read a mesage from a person with a positive attitude that inspired me to write this. They said they had finally started to focus on not the redness on their face but the things that were right in their life. I too try to focus on good things. Stress seems to be a factor in my roscea. I would love to go back to school but am afraid of the stress it would bring on. I am and have been told that I possess an amount of intelligence so I am not necessarily afraid I would fail but of the severity of my Roscea. I pray that this will pass before I am too old to complete my goals. Two years ago stress had a terrible affect on my health and I have been working on de stressing.

[Judworth]

Hello Smart,

You sound like you are an 'emotional flusher' like me!sidehug:

Oh! do go back to your studies, rosacea (as I said previously) does not determine who you
are (despite trying very hard!wink1:).

I too, have let stress affect me in the past.............a neat trick that works for me, when I
feel a flush coming on I fill a glass with ice cubes & crunch a few in my mouth & my face
very quickly cools, so I don't get too hung-up with the stress-flush-stress-more-flush
cycle!

I also do deep breathing exercises.............I know it may sound crazy, but it works for me!

My blush: face is only 5% of me...........the other 95% serves me well!

Good luck!

Judworth

[squirrelgirl6]

Hi...only just noticed the new replies to the post I put on a while back. Thanks to you all for your help and kindness. I do try very hard to be positive. In my case the majority of my body is ill so trying to focus on that instead of my face is swings and roundabouts but I try! yes:
I am very blessed other than my illnesses in regards friends and family, having a nice place to live and all I need. I wont give up. This site has taught me that even though it's a long long road.......to never give up coz one day something will help and I'll be glad I stuck it out. When you're hardest hit, you must not quit!
Bless you all.x