Author Topic: What were your first symptoms?  (Read 2724 times)


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Re: What were your first symptoms?
« Reply #15 on: July 12, 2017, 06:58:40 AM »
It is hard to 'tease out' first symptoms.

I was born with severe eczema and respiratory problems.

And I was always 'tired and achey' my entire life.  "I feel like I've been hit by a truck" and "I think I'm coming down with something" were the lyrics to the song of my life.

Inflammation has always been the culprit.  My Immune System Disorder in which my Immune System attacks my own body produces inflammation, in addition, of course, to the damage of the attacks.

However, in 2002 my eyes suddenly became so dry that my contacts caused ulcerations of the corneas.
That was the start of the Sjogren's symptoms.   Fortunately I was already seeing a wonderful Rheumatologist for my severe osteoarthritis and she made the diagnosis based on symptoms and put me on both Evoxac and Restasis.  "tests don't always show what is going on" so let's just treat what we SEE is going on.

From that point onwards my Immune System damaged my bladder (IC), the peripheral nerves in my legs (PN), the small fiber nerves in my upper body (SFN), my ears (Meniere's), my lungs (small airway obstruction), and I was diagnosed with Primary Immune Deficiency for which I receive IVIG every four weeks (for the rest of my life).  My Immunologist says "we use the tests we have, not the tests we need", and she is so right.  Fortunately my CVID (my version of Primary Immune Deficiency Disorder) DOES show up on all the right tests we have.

The irony is that the same Immune System which wreaks havoc on my organs/systems is 'weak' and needs help to protect my from infections, viral, bacterial, and fungal.  I truly have the 'wild child'' of Immune Systems.

The worst of both worlds.

At least now I KNOW that it is my Immune System that has caused all my miseries.  That it has never been 'all in my head'.   Lots of stuff IS all in my head, I'm sure.  But my rampaging immune system has probably caused all of that, too.

Ain't we got fun?

Regards,  Elaine
Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil


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Re: What were your first symptoms?
« Reply #16 on: July 12, 2017, 11:43:25 AM »
My goodness Elaine, sounds like you got the worst of both worlds:
A seriously misdirected immune system.
Sounds like you're a fighter though
and are trying to treat issues on many frontiers.
That's my attitude- never give up.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...


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Re: What were your first symptoms?
« Reply #17 on: July 13, 2017, 05:52:35 AM »
Wow. I'm always surprised by how different Sjogren's can look from person to person. I've only been diagnosed for about a year and a half and am still learning. I had noticed some eye dryness, but that's not what took me to the doctor. (I thought maybe it was just part of getting older!) I went to see my GP after I developed a group of symptoms that worried me not long after my youngest was born.
I had migraines almost every day, and I had never been someone who had many headaches. I was having hot/cold/wet sensations on my abdomen and legs. I would actually look to see if I had a wet cloth on my leg - it was so convincing! I had extreme fatigue, which is so hard to get doctors to take seriously, especially when you have a newborn. But I'd had a newborn before, and this was different. And, despite eating normally and having an appetite, I had lost 15 pounds in a short period of time. I was seeing numbers on the scale I hadn't seen since I was 13. My family was concerned just looking at me, but my doctor told me she would be happy if she lost weight for no reason! And she brushed all my other symptoms off as dealing with a newborn. After my doctor brushed me off, I went back in a couple of weeks later and saw a nurse practitioner who immediately ran blood work that included an ANA. When that was positive, she ran another panel and SSA came back positive and SSB just barely positive, sending me down the Sjogren's road.

Confirmed eye dryness came later as part of firming up a diagnosis, and I still don't have dry mouth to speak of.


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Re: What were your first symptoms?
« Reply #18 on: July 13, 2017, 05:41:11 PM »
My first symptom was pain in my kidneys. Doctor had me pee in a cup and tests were normal. He thought it was muscle pain.
Kidney pain got worse. I went to urgent care. They had me pee in a cup. Tests were normal.
And then the adventure begins!


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Re: What were your first symptoms?
« Reply #19 on: July 16, 2017, 11:18:43 AM »
Depression, stomach ulcer, and the symptoms I now recognize as POTS. I was 21. Then I got quite a bit better for most of my 20s but with fatigue being a regular issue and the previous symptoms popping up occasionally. I also developed what now are thought to be simple partial seizures during my 20s. Dry nose also started during this time.

Joint pain, carpal tunnel, dry eyes and mouth, more severe and regular fatigue and POTS symptoms did not start until around age 30.
38 y.o. teacher; anti-CCP+, RF+, otherwise seronegative; POTS; Plaquenil, Allegra, Depakote, Neurolink, C, probiotic, multi-V, magnesium, quercetin, NAC, DHEA, fish oil, D3, turmeric, ubiquinol; <3 my neti pot


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Re: What were your first symptoms?
« Reply #20 on: July 19, 2017, 11:06:33 AM »
i always had gastritis since i was 17. when i was 52 53 i started with vulvodynia, nobody thought tat it was neuropathy. at the same time, my ophtalmologyst during a visit told mne that i had dry eyes but most of my friends of my age used some drops so i went on without much trouble, but one day, all of a sudden my mouth got dry, very dry. i made my diagnosis of sjogren but they laughed at me. i wanted to make  a lip biopsy  and it was negative but two years later it became positive. they stopped laughing. me too.
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


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Re: What were your first symptoms?
« Reply #21 on: July 19, 2017, 04:08:40 PM »
Amazing how different we and our journeys all are!

bluegardenia- I also got laughed at a lot over nearly every complaint I've had over the past years.
I even had a dermatologist refer me to psychological treatment over my complaints of eyelid swelling
just because she didn't see it during the appointment.
I even had to save my own life by insisting a mole be removed that doctors refused to suspect had melanoma in it. It did. I caught it "in-situ".
We know ourselves best and must always trust our instincts.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...


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Re: What were your first symptoms?
« Reply #22 on: September 20, 2018, 07:47:08 AM »
Great thread... Let's keep it alive.

My symptoms in chronological order

Month 1 - atypical face pain
Month 2 - inflammatory dry eyes
Month 8 - dry mouth
Month 12 - 30 small kidney stones (likely renal tubular acidosis)
Month 20 - dry skin

Im sure plenty more to come. All blood tests negative (ana, ssa, ssb, esr, crp, anti ccp, anti centromere)

My rhumetologist still thinks its not sjogren !!!!


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Re: What were your first symptoms?
« Reply #23 on: September 20, 2018, 08:54:25 AM »
The first symptom that I complained about, that led to diagnosis, was constant pain in parotid salivary glands. It came on overnight, was relatively mild, and I went for 2 years with my dentist, an ENT, and my PCP telling me it was TMJ, though I knew it wasn't. I finally begged my PCP for imaging when the pain became so bad (felt like spasms or seizing). They found destroyed parotids and submandibular glands that were not quite as bad. I then had blood testing for SSA/SSB (high levels of both), and hindsight was 20:20. At this same time my fatigue became insurmountable. Not tired, but EXHAUSTED like I was fighting the flu but without the usual other symptoms. I often had to nap after taking a shower, it wore me out so much (still does). I sometimes sleep 10-12 hours and might have as many as two naps. No one understands this fatigue if they do not have it.

Looking back, I had a lot of symptoms but no one took any of them seriously because they could not find a cause, and I could live with them all so it was no big deal. I have NEVER been able to wear contact lenses (so that is 20-30 years), and a neuro- ophthalmologist told me I had very dry eyes. I have an excruciatingly dry mouth and a 2-hour cough every morning. I have had pain in my toothline, which I think is trigeminal nerve and I have had dental problems. I have gastro problems every day (pain and reflux is pretty constant), plus IBS with diarrhea all my adult life. I cannot tolerate the pain of a pelvic exam - AT ALL. And I also have "complex" migraines with extreme visual auras that may be related (caused by lights). I had my appendix dry up and shrivel and they thought it was a tumor so I had to have that removed. I had ductal breast cancer, so who knows if that might be related in some way.

Because we have such varied symptoms, no one doc takes us seriously, and thinks we are whining about small things. In reality, I think it is just the opposite.  I think we are hella strong, and take a LOT without complaining. Just because docs can't figure us out, or see the test results that provide them with proof, doesn't mean we are not suffering. I have been through a LOT in my life and dealt with it all, but the number of symptoms are really adding up these days, and it gets very hard when there are NO "good days."


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Re: What were your first symptoms?
« Reply #24 on: September 20, 2018, 01:58:25 PM »
WhatNow:  "First Pain I complained about"!  That should be the question/answer each one of us should ponder, recall, discuss.  So much happens over that 1 to 10 year span, 10 to 30 year span, etc while Sjogren's is doing its damage.  And just as you stated the first pain to whom I complained (and actually went to a dr. to address) was same as yours: parotid "swelling"---really: the PAIN was blocked duct causing (not to mention what appeared like a growth extending from that jaw line below it) the pain.  This was pain worse than labor pains.  I don't think I ever went to the floor in pain (cause I knew I couldn't get up from the floor) but it did get me to a sitting position quickly.  The first few times it hit I learned to consume nothing but water afterward I had a couple of days of antibiotics. 

At the same time, but not painful, were the myriad symptoms we all address.  My eyes were the first organs an eye doctor addressed.  When he told me how dry my eyes were, no explanation or suggestion was made as to why.  He did recommend (and introduced me to) preservative free OTC eye drop vials with instructions to apply "when dry."  Well....what did that really mean when dry had become the norm?  I did use drops day and night...and sometimes if i'd been in sand, dust , grit...i'd use the drops. 

All the rest: stomach stuff, burning tongue, early a.m. coughing, discoloration of teeth, eye conditions..oh gads ---you've all had them or heard them 100s of times ...were treated by the various physicians.  Never tht to put all of them together. 

I'm replying to this one to say:  I've just had my 2nd eye cataract surgery done.  This one was more successful than 1st one.  My vision is 20/20....but my eyes are dry, dry dry. And yes, I use restasis twice daily (and have for nearly 4 years.  And therein is the problem.  I'm 76. Diagnosed at 71.  If you are young....use those OTC drops.  Because of the Sjogren's "dryness" my retinas were too thin to be able to have the "miracle" lenses which restore all your visual probs.  I had to take the plain vanilla which will correct the distance vision.  Thing is, that is why I wore glasses.  Placing that lens in, I've lost my close vision.  Now I have to wear cheaters..(most likely).  I can't have my eye test for awhile.  I asked today "dry eye" is touted everywhere now (w'out Sjogren's attahed to it) and does that dry eye cause this same thing.  He said no.  The Sjogren's had it's way with mine. guys are more alert than I was.  I didn't start asking until I was 68.  And again, as I started this:  the sialadenitis (parotid pain) is what took me to the dr. to say "what the...?"   Sigh.  --btw: cataract surgery: I was able to tolerate the laser surgery for the procedures.  I was thankful for that....and worth the extra cost as well.

I'm hoping after the swelling goes down, this recent eye will be better than the other...and I won't miss my "glassless" days as much as I think I will.

Tend to your symptoms.  There is SO much more out there today than there was but for 5 years ago.
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

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Re: What were your first symptoms?
« Reply #25 on: October 02, 2018, 04:48:46 PM »
Hi, Sharon.  My first symptoms were gastrointestinal.  I also would periodically go completely dry in my mouth and everyone thought I had diabetes.  Never had it.  Funny thing was that when my mouth went dry, so did my nose and eyes.  No one believed me.  Then the neuropathy and muscles started acting up and I thought I had parkinson's or MS.  It took doses of prozac and my main doctor leaving that got me the right blood tests 6 years later.
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops


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Re: What were your first symptoms?
« Reply #26 on: October 03, 2018, 06:24:45 AM »
My first symptoms were inflamed, dry eyes with burning foreign body sensation... occasionally the left would tear more than the right eye.  That was the opposing lacrimal trying to counter a tear deficiency in the right (the automic response of our body).  Oral dryness ramped up over the same 2-3 week period.

Additionally, I experienced feverish night sweats... and I would "stink" the following morning (my guess is that was part of the Sjogrens induced exocrinpathy that has ceased my normal sebum oil gland production and causing my dry skin.

Anywho, these symptoms built up over that 2-3 week period with a crescendo that I can only explain as feeling like a trash fire in my face... an autoimmune flare.  Separate testing (the Sjo test from B&L) during this time period captured the story of a full on immune response.

No additionally symptoms since then.  (I have been on Rituximab which has lessened the symptoms, and stopped flaring altogether).  Just persistent dryness that I manage.

I figured it would be interesting to note that prior to that three week Flare, I had no real noticeable symptoms of Sjogrens per se.  I did have some plaques that developed on my hairline behind my ears during a period of extreme stress (flight school).  I figured those for acne, as I had no real experience with immune system manifestations... looking back there are weird things like that though (signs of overactive immune system).
« Last Edit: October 03, 2018, 07:48:57 AM by markt »


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Re: What were your first symptoms?
« Reply #27 on: October 04, 2018, 04:35:58 AM »
Dry, red and gritty feeling eyes. At same time noticed my mouth was always dry
and needed a bottle of water with me at all times.
medications: synthroid- Cymbalta- plaquenil- lots of supplements

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Re: What were your first symptoms?
« Reply #28 on: October 04, 2018, 10:47:12 AM »
Name it, I had it: pain, swelling, gastro issues, migraines (as in had to go to the ER level), crippling fatigue, and much more. My husband says I was like an old fashioned clock that sprung all of its works at once.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.


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Re: What were your first symptoms?
« Reply #29 on: October 09, 2018, 03:13:42 PM »
I swear I felt totally fine and then gradually started noticing that every time I was out in the sun, my eyes hurt. Then they just started hurting all the time and I noticed if I wore swim goggles, they would feel better. Can you believe I went to my PCP and he said if I had dry eyes, they would be "watering"? Eventually, after two more appointments complaining, he finally gave me a referral to the opthamologist and I was treated for "dry eye" for a year. Then one night, went to bed with my mouth feeling completely normal and woke up to a completely dry mouth. Then off to doc and rheumie, who diagnosed Sjogren's from my bloodwork and told me my life would never be the same again--not exactly a wonderful bedside manner!