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Old 05-02-2012, 05:34 PM   #21
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di88 HB User
Re: CPEO 2011

Hi, I know its a little late but just came across your post now and had to say how similarly I feel in terms of my symptoms. Similar to you, my symptoms started in my early 20's. I have had surgery on my left eye but the results have not sustained. As the day progresses, it definitely becomes harder to keep my eyes open- feels like I have to lift a 50 lb weight with my eyes and like u said my forehead muscles are extremely sore as well. I also have a lot of generalized fatigue and aching muscles which I think is also related to cpeo. Anyway just thought of sharing because what you wrote sounded so familiar.
All the best

 
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Old 05-04-2012, 11:55 AM   #22
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Re: CPEO 2011

hi, well... now I am back in Florida with heat but waiting for humidity to kick in. I have done so many hot compmresses and put so much gel in my eyes...
I will tell you my main thing that makes in difficult to function in light sensitivity. I do have terrible Chronic Dry Eye Syndrome however the extreme light sensitivity sucks. I am close to just giving up... but through new means here in FL... After gel, taping, sitting in the dark, I am now wearing two pairs of sunglasses on top of the other when driving. next I bought some 20.00 goggles (way too expensive) and will put REFRESH PM in my eyes at night and sleep with these goggles. I have been taping my eyes closed for almost one year, I still have blurry vision etc... so on I go to swim at night LOL
I do not drive at night and since I have such horrid dry eyes, Frontalis sling or any eye lift is out. Last Occuplastic I saw a week ago said we could lift my lower lid and that might help with the dryness but no job, no insurance doesn't allow that at this time. Probably I will file for disablity b/c I have been back in FL and can't find a job and also have chronic heel pain. I have not turned down any jobs though I have gotten a few interviews and none have turned out. Everyone responds differnt with this CPEO... Hope you are able to deal.... support and figuring your way to be as comfortable as you can helps.

 
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Old 09-04-2012, 08:34 PM   #23
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Is anyone still around with CPEO?

 
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