March 24, 2016 at 4:17 pm #986crystal81Participant
This is a question I hope Dr. Diana can answer. I mentioned it in another post but wanted to ask directly about giant papillary conjunctivitis as it relates to hypermobile EDS, mast cells, etc.
Other than an hEDS diagnosis, I don’t know exactly what is going on with me but in addition to the other symptoms I’ve been experiencing (which I’ll list below though I assume they’re “typical” for this group), I’ve had GPC for nearly three years. It’s been treated with steroid drops, which seems to reduce it a bit, but I can no longer wear contacts (even one days) and neither the symptoms nor the bumps ever completely disappear. The eye doctor I’m seeing has added allergy eye drops and a “wetting” drop but she said she’s not sure why it’s not clearing up.
I’m wondering if this might have to do in some way with everything else that’s been going on and if it might even be a clue for me as to which direction to look in. Any insight would be most appreciated!!
All symptoms (started 3-1/2 years ago after giving birth):
– severe fatigue
– muscle pain (all over body)
– joint pain (infrequent, typically in hands)
– dizziness/feeling off-balance: kind of like being on a boat (no falling or fainting)
– heart palpitations; sometimes fast heartbeat
– infrequent episodes of true vertigo (lasting several hours to a day; can’t get out of bed)
– headaches (which are greatly relieved by trigger point massage)
– visual problems (eyes don’t seem to adjust back from bright lights or strong patters very well; things sometimes look like they’re moving when they’re not; I see flashes out of the corner of my eye during “flare ups”)
– alternating cold and burning toes (was diagnosed with Raynaud’s many years ago but now sometimes they feel on fire rather than cold)
– giant papillary conjunctivitis (which does not go away with steroid drops)
– pins and needles sensation that comes and goes and moves around
– increased acid reflux causing sore throat, hoarseness, etc.
– change from terrible constipation before all of this to frequent loose stools now
– anxiety, panic attacks
– restless sleep (I fall asleep fine but never feel like I slept well)
– night sweats (seems to occur around my period but I’d never had this before)March 24, 2016 at 5:37 pm #5916Dr. DianaKeymaster
Hi Crystal, I wish we could evaluate and diagnose you over the internet, but with our complicated cases, it would be too easy to miss something or guess wrong. 🙁 I WILL tell you that it can take a while for GPC to go away, and you DO need to be out of contacts completely for a while. I’m not sure how long you stayed out of your contacts? It is easy for it to come right back if not fully healed. Your doctor will probably want to keep you on a topical antihistamine and topical mast cell stabilizers. Perhaps that will do it? Hang in, my friend.
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