Author Topic: When did it start?  (Read 487 times)


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When did it start?
« on: April 16, 2018, 06:16:48 AM »
Hi everyone. Hope you all had a nice weekend.  I was thinking, when ever you go to a new doctor and they ask you when did this all start?  And it really takes some analyzing about if there was a defining event or symptom that started this all for me. For me I was healthy right up until the last few weeks of my pregnancy with my first son. At week 38 I was diagnosed with preeclampsia before then I had a very healthy pregnancy. In a matter of hours I was in the hospital being induced.  On IV medications and getting worse, after that it?s a blur of one emergency after the next ending with an emergency c section. But we both came through the event fine. He was a big baby with no issues.  Me on the other hand, that was the beginning of all of this 11 yrs ago. I began having swollen tonsils regularly and spikes in blood pressure and heart rate. Of course as you all are probably familiar with all tests were normal and I was ?fine? but I wasn?t. Years later, one mysterious symptom after another. Always getting seriously ill. Several surgeries( csections, gall bladder, appendectomy, cardiac ablations). Strange illnesses. (SARS, shingles,) Been hospitalized more times than I can remeber.  I?m here on a forum for Sj?gren?s with my new friends, that actually understand me and I?m wondering about your stories and when did it all start for you?  Was there one incident that lit the fuse for you?  I?d like to hear about it. Thanks


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Re: When did it start?
« Reply #1 on: April 16, 2018, 07:21:47 AM »
Hi Kristina, I'd been having dry eyes on and off for a couple of years, but flax oil seemed to cure them.   Then in early 2015 I had some kind of gastric flu type virus and I don't think I ever got over it!   I didn't start to feel better in the normal way, had a couple of months of labyrinthitis, rashes, dry eyes/mouth/nose, and feeling utterly exhausted however much sleep I had.  Lost weight, and my hair got much thinner.    I still have those symptom, I would say the fatigue is not quite so awful as that first year, but I rarely feel energetic.   It's very hard to pinpoint the trigger for all this, it could have been the virus, it could have been something emotionally very stressful that happened in 2014, or maybe it had been there for years.   I tend to think I might have gone on just having minor symptoms without the stressful event, but that's only guesswork.   It sounds as though you had a lot of stress in your life, I wonder if that was involved in your physical symptoms.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.


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Re: When did it start?
« Reply #2 on: April 16, 2018, 09:36:11 AM »
Hi Kristina,
    On this forum I have read numerous accounts of persons who can either go back to a certain age or an event.  I could easily recall the first time I was asked about what I guess was my first symptom.  No dx, just a query.
    Fast Forward about 25 years, and multiple symptoms had introduced themselves, I found my way to a rheumy.  I call him my diagnosing rheumy.  When he begrudgingly agreed to order blood tests, I was told it was likely I had sicca.  Didn't matter to me what "it" was, just tell me what to do.  Needless to say, the tests were positive...every last one of them!
    Now...when I went back to him, I began telling him about being treated by an ENT for sialidenitis for 3 years--and asked if that was that when I "got" SjS.  He told me NO ONE can tell you when it starts.  He did say sialadenitis was a sure symptom, and it is probable I could have been positive 3 years prior. 
    Since then, on this forum, I have read dozens of accounts from credible sources detailing their symptoms from either a certain age or event.  I've done same in my mind.  After my dx it took a short time to be dxed with a plethora of conditions. 
    That's why I am sending this message: It's about one of your conditions in your signature line: Pleurisy.  About 30 years ago I arrived at work one a.m. and could barely walk into the building.  A friend helped get me onto a table, nurse came.  Severe pain, unable to take a deep breath.  Sure heart attack they agreed.  Nurse took me to my doctor's office.  He dxed it as pleurisy.  Went home..don't recall the med. 
     About two years later the doc commented i'd never had it before...which he found unusual.  Within a couple of years I was sent to a Pulmonologist for eval.  I was put into the "chamber" for breathing tests.  NOT the little tube thing which is popular now.  This was fully scientific.  Came out with an innocuous dx...and told to use a rescue inhalant.  Which I carried around for well over a decade.  Used maybe three times.  A few years later I was given (regularly) EKGs for this chest pain/difficulty breathing.  Nothing.  THEN...about 4 years ago one particular week "the" pain creeped up..and after several days I was sent to the ER for pain.  Of course they tht heart attack.  Wait...i'm getting out of sequence here---about 5 years ago I had a GP diagnose the mysterious chest pain, etc as costochondritis.  Gave me prednisone.  Gave me extra as she stated it would reappear.  SHE said it was not due to SjS yet accompanied many with SjS.  NOW back to the 4 years ago in ER.  I learned the ER won't give prednisone for the condition, yet WILL give the pain shot.  Then up to you to get to a doctor's office to get the prednisone burst necessary to decrease the inflammation. 
     I am NOT trying to dx you.  I am just sayin'---IF you are having the pleurisy attacks regularly, you might ask your rheumy to determine if it's that or costo.  There's medicine for the costochondritis.  BTW: my rheumy believes ALL those early treatments for conditions w' which I was dxed ..were ALL costochondritis.
    I've had 3 ER visits..but carry my emergency prednisone burst following the pain injection.  Just something to consider.  And now...I can answer your question: YES ...that first "pleurisy" attack was the first anything from which all else followed.  I do NOT think costo is the root of my SjS.  Just saying: that was my moment.
   I hope this information helps you.  Let us hear your outcome of this thread.
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: When did it start?
« Reply #3 on: April 16, 2018, 11:18:52 AM »
Very interesting Courtenay. I was getting what they were calling pleurisy when I was having frequent bronchitis. This was even before I was diagnosed with RA. Then I a few years later I was off my meds because we moved and I started a new job and didn?t realize I would have to wait 3 months for that insurance to become effective. I ended up in the ER with terrible chest pain. My heart was racing. I couldn?t breathe.  My joints were so swollen that my foot looked like I was run over by a car and I couldn?t walk.  Anyways.  In the ER they were so concerned about my foot because it was the visible symptom that they rushed me to X-ray, but I was very much concerned about my chest pain. They diagnosed me with pleurisy and gave me high dose steroids.  I do believe it could have been costocondritis like you say.  Something else I suddenly remembered was that in the beginning I started having tons of rashes. Hives. Even anaphylaxis from which no one ever found a culprit. I went to several allergist. Turns out I wasn?t allregic to anything I was exposed to. It was a mystery. I was at work and started swelling on my hands and getting rashes whenever I put on gloves. They sent me immediately to workman?s comp thinking I was allergic to the gloves. The doctor walked in. Looked at my hands and said to me you are not allergic to anything.  You have an untreated connective tissue disorder. You need to see a rheumatologist immediately.  I was speechless.  No one ever said that to me and after seeing me for 30 seconds he knew something no other doctor knew after so many tests.  I credit him for pointing me in the right direction. It?s amazing how everything fits together when you look back.


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Re: When did it start?
« Reply #4 on: April 17, 2018, 10:18:11 AM »
Hi Kristina,

My 'unifying diagnosis', which explains most everything that happens with my health, is Primary Immune Deficiency Disease.  I was diagnosed with PIDD when I was 71, and began treatment when I was 73.  I have IVIG every four weeks, and will for the rest of my life.

I had symptoms of my Immune Disorder from birth (severe eczema with boils), and continued with various respiratory problems, general tiredness and lack of energy, for most of my life.

It wasn't until I was diagnosed with severe Coronary Artery Disease at 57, followed by severe dry eyes, and dry mouth, and then progressing through Anemia, Interstitial Cystitis, Meniere's Disease, and finally profound Peripheral Neuropathy, PIDD, Small Fiber Neuropathy, Gastric Neuropathy (Achalasia and SIBO) that I had the 'full effects' of my disordered Immune System.

So far I don't seem to have any serious cognitive problems, for which I am grateful.

Each of us has a slightly different set of conditions with our Immune Disorder(s) and many people with a diagnosis of Sjogren's Syndrome have a fairly uncomplicated course during their lives.

We, here on this forum, are among the few with serious progression.  For me, the neuropathies are the worst problem, leaving me disabled.

On our forum, I know you will continue to find information, supportive stories and loving care.

Hugs,  Elaine

Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-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-Omega 3