Author Topic: What were your first symptoms?  (Read 3473 times)


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Re: What were your first symptoms?
« Reply #30 on: October 10, 2018, 06:23:30 AM »
Hi Sharon,

Great post! My first symptoms were:

- photophobia
- continuous strep throat infections
- severe IBS
- frequent flu-like feeling
- frequent headaches
- sudden decline in menses at age 30
- sudden irritation from direct sunlight on skin
- inability to wear contact lenses due to dry eyes (opthalmologist suggested Sjogren's which sounded incredulous due to my age)
- extreme fatigue
- dry mouth
- painful joints
- dry skin, etc.
51. DES-daughter, GAD, Lyme's ('98), Sjogren's ('03), hypothyroid ('04), osteoarthritis ('16), Blepharitis ('18), bilateral Frozen Shoulder ('19), pilocarpine, thyroid hormones, 25mg quetiapine, low dose testosterone. Endometriosis, cherry angiomas. Allergies: nickle, methylisothiazolinone, latex


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Re: What were your first symptoms?
« Reply #31 on: October 11, 2018, 07:59:58 AM »
Hi! I just joined. I don't have a confirmed diagnosis (apparently I lack the markers) but we're operating under the assumption that I do have it based on my other symptoms.

My first symptom was severe dry eye. It started years ago and is worse at night. I'll wake up with my eyes so dry it feels like someone is scrubbing them with sandpaper. Then they overwater and hurt for at least an hour. This has been happening for years. I brought it up to my old eye doctor, who said "Try drops" but didn't specify what drops. I got a new eye doctor who actually checked my tear production, said it was alarmingly low for someone my age (28), and referred me to a rheumatologist.

I also have dry mouth, but I figured that I was just always thirsty. I always carry water with me wherever I go, and I try to keep mints or candy in my purse and car. Most of my symptoms happen at night, apparently, because sometimes I'll wake myself up trying to swallow and being unable to because I don't have any saliva.

Along with those, I have acid reflux (had it for years, started in high school), extremely dry skin (lips are almost always peeling and even though I regularly apply lotion, my hands feel like they're burning because they're so dry), and the occasional random symptoms (gastro difficulties, a shocking pain in my jaw/ear [which may or may not be related]).

The dry eye is the worst, though, at least for now. I wouldn't have even known about Sjogren's if it weren't for my aunt. She has it (also unconfirmed, I believe) and she's always putting eye drops in, chewing gum, and applying chapstick. When I said "Hey, I do all those things all the time too! Glad I'm not the only one" she told me about Sjogren's.


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Re: What were your first symptoms?
« Reply #32 on: October 16, 2018, 07:40:12 AM »
Hi, yes, I'll chime in even though this thread was started over a year ago, hoping it is still active.

I am 70 years old

From my mid twenties:

Night sweats
Swollen glands

Diagnosed with CFIDS in mid thirties
Mostly felt like I was coming down with the flu for a good chunk of my life.

2009 - First experience of right Parotid gland swelling up like a golf ball.

Since 2013
2013- Valley Fever in Arizona
2014 - Craniotomy for benign meningiomas
2015 - Start of noticeable dry mouth, eyes, lots of root canals etc.
2016 -bronchitis
2017- Valley Fever Relapse
2018 - Ocular and Face Shingles - 4 months, Pneumonia - two months, Vasculitis - one month,
           August 2018, PCP diagnosed SjS based on symptoms log you.  All tests SERONEGATIVE.

Now- Trying LDN! Various doses and CBD gummies, sublingual and capsules.  Staying away from other NSAIDS or OPIOIDS due to LDN.
Our bodies = Our Planet


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Re: What were your first symptoms?
« Reply #33 on: October 16, 2018, 04:22:42 PM »
ciao ccc
 when you say "Tend to your symptoms.  There is SO much more out there today than there was but for 5 years ago."
are you speaking od meds?
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds