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Lost hope

Posted , 4 users are following.

tish36623
tish36623

I was diagnosed with blepharitis/dry eye a year ago, followed by rosacea.   I wondered if anyone else was experiencing my 'unusual' symptoms.   

The rosacea is around my eyes but yet in in it - my eye specialist was surprised it wasn't already in my eyes and it is probably just a matter of time.  I had tried to manage my condition without medications but this failed.   

Eye specialist put me on tetracycline to help with my sore face and it would also help protect my eyes if the rosacea made that small leap into them.   After 2 and a half months I had to stop as it made my flushing worse and hadn't helped with the inflammation during that time.    

The odd thing is that all food affects me in different ways.   Dairy/fruit/veg makes my face very sore and will give me small pustules.   Other high carb stuff (breads, sugars, etc) give me pain in and around my eyes, headache and worse pain in the face.    I am now just living on eggs cooked in coconut oil, plain chicken (can have some grilled and boiled fish but so sick of this now).   I have cammomile tea with coconut oil in to help keep up my calorie intake and a little nut butter just for something nice!!  That is it.  Even with this limited diet I still have the sore face and discomfort around my eyes but obviously worse if I eat anything other than the things I have mentioned (or I eat too much nut butter).  

My face swells every day.   It flushes due to the usual culprits - warm rooms, sun, wind, cold then warm atmosphere, stress, exercise.  There is no managing it and, frankly, the professionals scratch their heads and say I have unusual symptoms.   

My life is ruined.    I can't eat properly.   I can't just leave the house without it having an affect.   And I live in fear that this thing will jump to my eyes as there will be no protection.   I have depression and anxiety.   Councelling doesn't help - I've had a years worth - if I can't be cured I certainly can't live with it.   

 

1 like, 8 replies

8 Replies

  • Nene777
    Nene777 tish36623

    Posted

    I'm sorry you are feeling so depressed, my heart breaks for you because I've been there, and still have my days. I have rosacea in my eyes but you cannot see it, it's just very gritty feeling and they feel hot sometimes...

    My life was great, but started flushing pretty regularly and my face was burning hot- I am on a beta blocker ( lebatatol) because they also discovered my blood pressure was high- unusually high for someone that ran 5 plus miles everyday and no family history- I'm also on doxycycline 100mg twice a day, mirvaso for the redness ( which helps), and I cleanse my skin with vanicream ( OTC)- I do have to stay out of the heat so it is disruptive with trying to have a normal life, but as quickly as this came on I'm hoping one day it will just go away- I'm sorry that you are sad- please let me know if there is something I can do for you or if you have any other questions.

    Jeannine

  • Nene777
    Nene777 tish36623

    Posted

    Have you tried a beta blocker? Although my flushing is not gone it has helped with the severity of it- your general practice doctor can put you on it.
    • tish36623
      tish36623 Nene777

      Posted

      Hello Jeannine, thank you for your reply.   I know, I sound so miserable ut I'm at my wits end.   I have tried lymecycline, pure tetracycline and oxytetracycline but they have all made the flushing worse.   My GP doesn't think worth trying doxycycline as it's the tetracycline in these that I react to.  Being on doxy you are giving your eyes some protection from damage which is great but it's not an option for me unfortunately.  As I said, rosacea around my eyes but not yet in them.  Was told I would need steroid drops if it does which also cause problems.   Hoping it doesn't make that leap.   

      A dermatologist suggested trying cloridine (beta blocker) which I haven't as yet.   My GP started me on HRT two weeks ago as I was also suffering menopausal flushing which didn't help.  The HRT has kicked in pretty quickly and I seem to be ok on it so far but have got to give it a month before going back to GP.   Problem I have is we need to try one thing at a time otherwise it gets confusing as to how I react to what.   So it's a long, slow, painful process.   I may try a beta blocker - my blood pressure is good if not slightly on the low side.   

      It's very stressful being on such a limited diet for so long.   Knowing if I have anything else I will end up with an even more sore face or more pain in face and eyes.   And not just being able to go out without taking precautions.   My mother is in hospital long term and just sitting in the hospital for 15 mins my face starts to flush and swell.   My eyes get gritty and uncomfortable.

      I don't put anything on my face at all, just splash tepid water on it.   I wear a hat in the sun but my face will still flush and swell due to the warmth, and I cover my face with a scarf when it's cold/windy.   The stress is a difficult one to control as the whole thing is stressful!!!!    

      My husband is off to Florida for two weeks tomorrow with his brothers.   No way could my face tolerate the climate - so depressing.   I find people don't have a lot of sympathy because it isn't life threatening (although I'm suicidal - does that count?) and I don't have a face covered in spots but only because I'm on a limited diet.   This is truly a life changing disease. 

  • carole18722
    carole18722 tish36623

    Posted

    Sorry to hear about your depssresion but i can understand.I have had rosacea for many years but luckily think it is under controll.  I dont use any soap on my face just tepid water also i use coconut oil to moisturise. When i have a break out i use metrogel and i keep my eyes moist by taking sea buckthorne oil capsules. I hope you find a solution soon . I also wear sun glasses in the day light i find it helps. Take care
    • tish36623
      tish36623 carole18722

      Posted

      Thank you Carole, glad to hear you've found a way to control yours.  I take omega 3 oil capsules for dry eye but cannot wear sunglasses or my normal glass - my nose has been sore/painful since this all began and no one can understand why apart from it's the rosacea.   Have not tried any topical creams - do you find the metrogel calms down the soreness?   I have the soreness all the time but only get pustules when I eat anything other than my limited diet.   If I could find a way of sorting the inflammation out I may be able to eat a more varied diet!
  • carole18722
    carole18722 tish36623

    Posted

    Will contact my daughter to see if she can sugest a diet shes a therapist will let you know.
    • tish36623
      tish36623 carole18722

      Posted

      Thank you Carole but food really is a problem.   It either makes my face sore or gives me pain in and around my eyes, face, headaches.   Under the supervision of a very well qualified nutritionialist we failed to get me past the chicken and egg thing.   We did wonder if it was carbs of every kind but read meat gave me problems as well.   I still have problems with the little I do eat - seems to be everything I put into my body!    
  • pamela87113
    pamela87113 tish36623

    Posted

    I'm not really into Roseacea - yet, but having worked through specialists for other autoimmune conditions some recent symptoms may lead in this direction. I do however have lots of experience of dry eye and last week saw a corneal specialist who suggested that drops containing the Carbomer compound are best protection. For me they have to be preservative free and I think that anyone using drops on a regular basis should go for this option though they do work out more expensive. I also find that using a warm eye bag helps considerably. My pharmacy had to order it but I've since discovered that they are readily available on-line.
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