Just out of curiosity, what were your all symptoms when U first got sick, and knew something was going on?Was it sudden like mine were, or was it over a period of time? The hallmark symptoms of dry mouth and eyes weren't my first chief complaints/symptoms although I still had them.

I had lots of dental decay that started at a young age which now I know was related. I was told several years prior that my eyes were dry as well, but not to the point that anything was suspected. My first noticeable symptom was extreme fatigue, but I also birthed my 4th child about 6 months prior which i related it to, even though I always felt exhausted after adequate rest. Then I started having bad nerve and joint pain that I described to my PCP as bone pain. I started getting weaker and weaker very fast, and my migraines worsened. At this point, I had to take a sick leave from work. Not long after that, I started vomiting every morning, or more like dry heaving. My PCP is the one that initially ordered labs and told me I had Sjögren's and referred me to a Rheumy. I guess I'm fortunate that it only took about 6 months to get a DX, but it sure did feel like forever. I truly believe that birthing my last child and due to the hormone fluctuation of my pregnancy brought my symptoms to surface even though my Rheumy told me it was a slow progressing disease and that I most likely had it for several years prior. Im just curious as to how many people had a similar experience like mine.

40 Answers

possessive.latina
Answered 1 year ago    reply

After I was diagnosed with stage IV endometriosis and had a total hysterectomy in 1998 I finally felt great as the pain was GI ally gone, about two years later is when everything was starting with the dry eyes, muscle/joint pain, bladder problems, chronic sinus issues, sleep apnea, my medical records probably consist of enough paper from a very mature tree. Never been the same since. Very frustrating as my blood tests all come up negative but my docs know things are messed up. Sad that I have 10 doctors and only 54 years old.

kissel_t
Answered 1 year ago    reply

latina same here on bladder problems, muscle joint pain, chronic sinus issues, sleep apnea. I have PCOS (polycystic ovary syndrome). I have terrible brain fog and difficulty concentrating. They found on my MRI lesions on my brain that they believe are causing my cognitive challenges. I was diagnosed with primary sjogren's syndrome in November of this last year. I have terrible back spasms and pain. Hang in there I know your fight, and I'm there with you

possessive.latina
Answered 1 year ago    reply

I just started last year with the brain fog. That is scary stuff. I have lower back pain and spasms that happen too, geez I have nearly same symptoms as you. I just was never diagnosed with PCOS. Oh if time could just be turned back! However the surgeon that did the hysto believes I have had endo since about age 12. So who knows. Will we or the medical field ever really understand this stupid disease?

foamy_sassafras90
Answered 1 year ago    reply

The brain fog is the scariest part, I feel like I have Alzheimer's and I'm drugged all day. I swear I'm the movie dazed and confused

kissel_t
Answered 1 year ago    reply

Diamond same! I e struggled with work with the brain fog. The planiquil and anti-inflammatory Meloxicam have helped tremendously. I still have flares but that has helped.

kissel_t
Answered 1 year ago    reply

Now I need to work on diet and exercise.

foamy_sassafras90
Answered 1 year ago    reply

Where do you get meloxicam

foamy_sassafras90
Answered 1 year ago    reply

Also how long did it take for your fog to clear on plaquinel


vida_townsend
Answered 1 year ago

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possessive.latina
Answered 1 year ago    reply

I hope you are able to wait and things somehow get better for you. I am sorry you have been diagnosed with this stupid syndrome


possessive.latina
Answered 1 year ago    reply

Yes I was 36 when I had mine. Really had no choice as it was so bad. I can not say for certain that it was a direct relation to all this but in my mind it certainly feels like it. I still wonder if the three monthly shots of Lupron I had prior to the surgery is what contributed to bringing all this on.


dearman_leana
Answered 1 year ago    reply

I had extreme fatigue but I thought it was depression. I lost all my teeth following the birth of my 3rd. I'm due to have the last 6 removed. I tried to take care of them but they just fell apart.

dearman_leana
Answered 1 year ago    reply

Yea it sucks but I'm not in pain anymore so good riddance.


dearman_leana
Answered 1 year ago    reply

I've been losing my teeth since 21. I'm 31 and was recently diagnosed.


vida_townsend
Answered 1 year ago    reply

I've lost one tooth that resulted in an implant, but I've had 11 root canals, 11 crowns and numerous cavities. I've spent so much time and money in the dentist chair!!!


delilah.vong
Answered 1 year ago    reply

October 2015 I got so sick it almost killed me. No one could figure out what was wrong. I was vomiting non stop. I lost 15 lbs in 12 days. Finally they see I had Pancreatitis. It took 2 weeks to recover. I ended up having stroke like migraines. I was 35 at the time. When I mentioned that I was diagnosed with Anti cardio lipin antibody when I was 21, I was referred to a rheumy again. In Sept. 2016 I was diagnosed with Sjogrens. They did not completely rule out lupus. I have only mild dryness. For some reasons sjogrens likes to attack my inner organs.

vida_townsend
Answered 1 year ago    reply

Rheumy hasn't confirmed my dx of lupus either, but he says primary sjogrens and MCTD.


nbittle
Answered 1 year ago    reply

My story is very similar to Delilah Myers. I had been having stroke like migraines and my stomach just stopped working. 6 months later I had something that felt like a combo of a stroke and the flu and was pretty much on the couch for 3 months before I finally got my diagnoses. The severe migraines were my very first symptoms followed by stinging sensations in my bladder. Then the fatigue. Just recently my eyes have become dry blurry and so sensitive. I do find the AIP diet to be helping ( just started a week ago so time will tell) and supplements and light exercise( could be just a walk down the street or some mild stretching).

vida_townsend
Answered 1 year ago    reply

I had always had chronic migraines before (mostly hormone related with ovulation and cycle) but they got terribly worse once the pain and fatigue started. Some of them lasted 2 and 3 days at a time and landed me in the ER. Once I was DX and started Plaquenil, the migraines got better in the sense that I was able to ease them and rid of them for the most part on my own with my migraine meds. I take MAXALT and then used to use imatrex injections. I know the most horrific ones were due to the chronic inflammation that I had in my body before I started the plaquenil. To this day, I still have migraines on average 3-4 a week, but if i take my med early enough, I can usually knock them. Of course im not so fortunate with all of them.

willie72
Answered 1 year ago    reply

Any side effects from the Plaquenil?

vida_townsend
Answered 1 year ago    reply

Willie I didn't have any side effects from the plaquenil. I see where some ppl do, but I haven't. It's helped a lot!!!

wild.k
Answered 1 year ago    reply

Your story sounds so similar to mine!

willie72
Answered 1 year ago    reply

Can you explain stroke like migraines?

nbittle
Answered 1 year ago    reply

Willie my migraines started when I was 17. I'd get them every once in awhile. As I got older they'd come once a month and were easily aborted. 3 years ago I got my first "stroke like" migraine. It was fierce. Nothing worked on the pain. It caused severe blurring of vision in my left eye that lasted for over a month. It caused weakness on my left side as well as dizziness and unbalance that also lasted for over a month. I did go to the ER thinking I was having a stroke but CT and MRI were fine. Since then I have had several migraines similar to that one. They are very scary.


kissel_t
Answered 1 year ago    reply

For those that are commenting about the hysterectomy can you share with me what symptoms or problems you had that made you want to have that done? I cannot birth children and now I am too old. I have PCOS and Endometriosis. Primary sjogren's syndrome and lots of frustrating issues because of it.

possessive.latina
Answered 1 year ago    reply

Mine was severe cramps when I had my period, cramps lasting for about three days, very heavy bleeding, extreme fatigue, and a feeling of being ill all the time.

vida_townsend
Answered 1 year ago    reply

latina that's exactly how I feel and why I need it except my OBGYN performed a novasure ablasion on me me 3 yrs ago bc my bleeding was so heavy that I was having to get iron infusions in the outpatient at hospital. Then I started having 2 periods a month. I was sick all the time, and my worst times each month are around that time. Even though I don't have the heavy bleeding now since that procedure, the symptoms are all the same still. Im fortunate that the ablasion was successful for me, but I kind of traded one problem for another. My PMS symptoms are way worse, but I don't have the mess of heavy bleeding and lack of iron. Each person Is different

possessive.latina
Answered 1 year ago    reply

At the end I'd get so sick I'd be vomiting when that started happening within two weeks surgery was done. Hang in there hope things get better.

kissel_t
Answered 1 year ago    reply

Is this all separate from sjogren's syndrome or so you think it's connected.

kissel_t
Answered 1 year ago

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possessive.latina
Answered 1 year ago    reply

i think all our stuff is all AI connected. Just way too much stuff

possessive.latina
Answered 1 year ago    reply

I don't know. I think I had the endo and then that kicked off all the other issues I think.


loida.s
Answered 1 year ago    reply

First symptom, couldn't wear contacts. Next, Raynaulds. Then Gastro issues....heartburn, and intestinal.


foamy_sassafras90
Answered 1 year ago    reply

I literally had the exact same symptoms plus horrible
Chills and sweats all day and night

willie72
Answered 1 year ago    reply

Do you go from chills to sweats?

foamy_sassafras90
Answered 1 year ago    reply

No sweats to chills usually. But sometimes just random chills

willie72
Answered 1 year ago    reply

Diamond anyone ask a Dr what causes the chills. I feel like I would have fever-- no fever.. comes on all of a sudden..

foamy_sassafras90
Answered 1 year ago    reply

I dunno I've asked like every dr I have ahaha. Seems no one knows. If I were to guess it's inflammation. Same concept as when we are sick


shepard.adrianne
Answered 1 year ago    reply

Overwhelming fatigue is what sent me to the doctor, PC. First test she did was for autoimmune.....one visit to the rhmmy and I was diagnosed with sjogren's syndrome.


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