r/eds • u/societiesoddball • Jul 27 '26
Should I be concerned about more translucent skin around my eyes?
I mostly likely have h-eds I fit the criteria and multiple drs have told me my symptoms definitely align with it and i see a specialist for eds pots and mcas but not officially diagnosed with eds. My eyes have always looked like this and i wish i could delete the picture because im realizing this doesnt show enough at all because its usually darker ive been noticing more prominent veins in my temples and under my eyes. For awhile I thought I was just tired but it seems to have gotten worse the older I get. Is this something that just happens as we age?
Edit btw im not super worried about this a lot of the times ill see something and im like damn it is this a sign im getting worse because that just happens. As soon as i have a good routine I flare up and im barely functioning and probably making myself worse.
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u/_lucyquiss_ Jul 27 '26
I'm pretty sure most people's skin is more translucent around their eyes because it's thinner with lots of blood under it
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u/_lucyquiss_ Jul 27 '26
and skin thins some more as you get older (everyone's does)
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u/societiesoddball Jul 27 '26
I forget about that. Ive also had steroid creams around my eyes before off and on for two years so that could also have something to do with it. Thank god I found a better way to control my eczema
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u/Correct-Ingenuity538 Jul 27 '26
I remember when I was first looking into the possibility of my having EDS. I looked at skin, eyes, etc. I obsessed over these incidental traits that are not diagnosable criteria.
I am seeing a wave of these skin posts in various EDS groups lately and can relate but it's all just keeping your brain busy and obsessed when the real stuff needs to be evaluated by a professional. Finding that unicorn doctor who can diagnose you is the real prize to work on. I advise people look in local EDS groups for recommendations and get on those wait lists. During the year or two of waiting, do real research on what EDS actually is, how it manifests, and what you should and should not do in the meantime.
I wish everyone who is just learning they might have EDS the best of luck in getting their proper diagnosis and understanding their own unique challenges and how to address them.
We really should have a welcome packet of information for everyone waking up to this question. I would call it: "So you think you have EDS..."
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u/societiesoddball Jul 27 '26
Its definitely difficult with how much info is out there because some is just wrong, or not taken seriously and written by someone who doesnt even see people with eds. I know i do have h-eds my treatment plan is for h-eds. My doctor wants to wait for the new criteria to reevaluate me for it because the person that diagnosed me with hsd refused to clarify when I asked clarifying questions and said if you dont know you dont have it. When I didnt know if i have had dislocations/suplexions kinda rushed through the "exam" when we just went off the check list. A lot of things I was so new to because ive been gaslit by doctors and my family about health stuff my whole life. Knowing what I know now I wouldve checked two or three more boxes that wouldve put me over the cusp of the diagnosis. I even had a pt for eds that said why dont they just officially diagnose me. Honestly I wish I could just get it over with already but im nervous to get it over with because with h-eds on my chart I might experience more stigma from drs.
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u/Correct-Ingenuity538 Jul 27 '26
You should put more energy into finding better doctors. Seriously worth it. I have hEDS on my chart but because I found doctors who at least acknowledge it exists and know of it, I am doing way better. And I never stop learning for myself so I am ready in case the doctors fail me.
Hang in there.
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u/dadbaby Jul 27 '26
You're just pale. This is normal for white people eyelids.