Lost hope
Posted , 4 users are following.
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
Nene777 tish36623
Posted
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 tish36623
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tish36623 Nene777
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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 tish36623
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tish36623 carole18722
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carole18722 tish36623
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tish36623 carole18722
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pamela87113 tish36623
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