Author Topic: What were your first symptoms?  (Read 2723 times)

Sharon

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What were your first symptoms?
« on: July 08, 2017, 04:49:16 PM »
I've been wondering what everyone's first autoimmune symptoms were
before they developed what they now recognize as Sjogren's.

Interestingly, my 1st symptoms (many years before any sicca or joint pain) were actually:
Sweating attacks
Severe IBS
CFS

What were yours?


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...

Navigator

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Re: What were your first symptoms?
« Reply #1 on: July 08, 2017, 06:45:53 PM »
An all out painful neuropathy attack ...focused on the head, neck and shoulders  that made my Primary care doctor think I had a brain tumor.   The pain was unbeliveable. The pains in my head,neck and shoulders moved around every few minutes and had no connection to any injury.  I developed severe trigeminal nerve pain that radiated into my teeth.   My forearms tingled and I thought I had suddenly developed MS.  I had trouble needless to say sleeping.

It was totally out of the blue. Although over time I realized I had had a dry mouth requiring water when I was giving a presentation.  I dismissed it when it was happening.

It also went away after four days by itself....no drugs..just gone.

A friend of mine who ran EMS said he thought it was autoimmune and suggested a doctor in NYC.  The rest is history

I have not had the same pain since I started the meds I now take. Knock on wood.

Hashimotos thyroiditis, Primary SJS, IBS, autoimmune hearing loss, leucopenia, arthritis,asthma.
Synthroid, Plaquenil, Crestor, Evoxac,Vit D , Fish Oil, Restasis, Daily Walking, Sleep, Baby aspirin, Probiotic, avoid gluten,dairy and sugar, hearing aide, gratitude, big dog

Kathy57

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Re: What were your first symptoms?
« Reply #2 on: July 08, 2017, 08:42:45 PM »
Sharon,

I think my first really noticeable symptoms were all gastrointestinal.  I developed severe GERD, gastritis, esophagitis, Barettes esophagus, and chronic constipation.  I drank so much water that my husband was sure that I had Diabetes.

It all progressed from there.

Kathy
Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer

Sharon

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Re: What were your first symptoms?
« Reply #3 on: July 09, 2017, 12:55:03 AM »
Interesting...
so far looks like it began in all 3 of us with some autonomic nervous system dysfunction.

Who else?
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...

SunshineDaydream

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Re: What were your first symptoms?
« Reply #4 on: July 09, 2017, 12:42:37 PM »
My first autoimmune symptoms were brief strange sensations on the skin of my back (like red ants biting) and arms (like hair from my head had fallen and needed to be brushed away), rash on my hands and what turned out to be malar rash on my face. This, along with blood tests, resulted in lupus diagnosis. That all went away with plaquenil and never returned even after discontinuing plaquenil.

Nine years later, my first Sjogren's symptom was dry eyes.
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

Sharon

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Re: What were your first symptoms?
« Reply #5 on: July 09, 2017, 02:45:11 PM »
Sunshine- So strange your Lupus symptoms disappeared like that!
When my SJS symptoms actually began they were accompanied by a bright red rash on one cheek
and hives on my hands. It took a long time for these rashes to disappear, but once they did they never returned.
I was also itching like a mad man.
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...

DP

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First symptoms were foot & hand pain, dry painful red eyes
« Reply #6 on: July 09, 2017, 03:58:12 PM »
Great thread! This may help many others get diagnosed sooner.

I developed very dry painful red eyes at the same time I started experiencing foot and hand pain about three years ago. I thought my foot pain was neuropathy related to plantar fasciitis from standing on cement hospital floors for > 20 years. And I thought my eyes were all year-round allergies(!). Everyone around me must have thought I was stoned on marijuana all the time, my eyes were SO red and painful.

But I couldn't explain the painful fingers & hands. I thought I might be developing arthritis. It was so painful it felt like my hands had frozen onto the steering wheel during an Alaskan snow storm. Just nerve-y bone aching pain. I stopped blow-drying my hair for a year because it just hurt so darn much.

My primary care doctor put me a NSAID (etodolac) for the foot pain/plantar fasciitis) but I kept looking for more answers. It took over a year of seeing doctors to get diagnosed with seropositive (SSB+) Sjogren's.

I felt like screaming at the top of my lungs "It's not always dry eyes & mouth, folks."

Dawn
« Last Edit: July 09, 2017, 04:09:19 PM by DP »
Living with primary Sjogren's since 2015, SSB-positive, overactive bladder, insomnia. Currently taking Plaquenil, Xiidra eye drops, Detrol LA, Lodine, Tramadol 3x week, Temazepam to sleep, ubiquinol (coenzyme Q), Omega 3 fish oils, Vitamin D, calcium, magnesium & zinc.

Sharon

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Re: What were your first symptoms?
« Reply #7 on: July 09, 2017, 04:27:36 PM »
Hi Dawn, yes hopefully this thread may help others.
I also developed the painful red eyes and those exact hand pains you described!
Has anything helped you so far with either of them?
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...

vrystaat

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Re: What were your first symptoms?
« Reply #8 on: July 09, 2017, 06:38:54 PM »
My first symptoms were acute and severe pain in my feet (and on my birthday too). This progressed to continuous pain, and then loss of sensation in my feet, which gradually ascended to mid-thigh over 20 years. Soon after this, I began experiencing devastating fatigue. As I've posted before, I was not diagnosed for 10-12 years. Then suddenly after 20 years, I had a severe flare-up in 2013, and all my blood chemistries turned positive.
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

Sharon

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Re: What were your first symptoms?
« Reply #9 on: July 10, 2017, 02:17:42 AM »
vrystaat- Were those pains diagnosed as neuropathy?
Did you have those same tests earlier on and they came back negative then?
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...

lorigacc

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Re: What were your first symptoms?
« Reply #10 on: July 10, 2017, 05:40:33 AM »
Way back then....it was dry eyes and mouth that started it all. I was foolish enough to believe that it would end there ::)
Secondary Sjogrens, Rheumatoid Arthritis, Antiphospholipid Syndrome, Osteoporosis, Vertebral Compression Fractures, Kyphosis, Hiatal hernia
   Plaquenil, Forteo injections, Restasis, Prinivil, Ecotrin, Calcium, Vitamin D, Probiotic, Fish Oil

AnneNeville

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Re: What were your first symptoms?
« Reply #11 on: July 10, 2017, 06:38:50 AM »
Anxiety and depression. A few years earlier, I stopped being able to wear contacts, so I knew my eyes were dry but it wasn't really problematic to me for a long, long time.
Diagnosed with primary SS 2/2017 after 20+ years. Double vision from 6th nerve palsy, severe anxiety (now gone!), fatigue, dry eyes. Now: 12.5 mg Prednisone (burst), 200 mg Plaquenil, Prozac, Wellbutrin, Restasis, Xiidra.

Sharon

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Re: What were your first symptoms?
« Reply #12 on: July 10, 2017, 01:22:30 PM »
lorigacc- For some it does appear not to develop too far beyond. I guess we're among the unlucky.

Anne- Does the Wellbutrin help with your fatigue?
 
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...

ghostkiwi

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Re: What were your first symptoms?
« Reply #13 on: July 10, 2017, 01:43:35 PM »
Looking back, the first problems  I can place would be fatigue all the time and my fingers and toes would be frozen all the time. My mouth and eyes were a problem but I had thought it was just a normal thing to be dry and thirsty.
22 years old, Sjogren's, Syncope, Anemia, Pinched nerves in Neck, arthritis, Plaquenil, Methotrexate, Evoxac, Triamterene-HCTZ (for potential Meniere's Disease), Vitamin B, Iron Supplements, Restasis, Lotemax, artificial tears, traumeel

Sharon

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Re: What were your first symptoms?
« Reply #14 on: July 11, 2017, 03:50:04 PM »
ghost- sounds like you too have alot of autonomic nervous system symptoms
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...