Symptoms and Onset

[Reabee2]

I am a 24 year old female.  This past summer I was in Barcelona, Spain after a cruise when I woke up on morning and had a feeling that something was off.  I couldn't pinpoint anything exactly but my head felt really heavy and like I was in a fog.  I also noticed that my neck and shoulders were really stiff and hurt a lot.  In addition to that the joints in my hands hurt a lot and felt as if they were swollen.  I thought that maybe I had just overdone it on my travels.  However, after a few days of rest I did not feel any better. 
About 3 days later I returned to the U.S. and was still having problems, although the symptoms I had were getting worse and I had some new symptoms including extreme fatigue, muscle pain, muscle cramping, chest tightness, pain in other joints (feet, elbows, knees), and a soreness all over my body at times.  At that time I believe that I had probably picked up a virus from my grandfather or someone I had come in contact with when I was traveling.
A few weeks went by and nothing got better, things just got a lot worse, and so I made a doctor's appointment.  At first the doctor thought that I had probably picked something up when I was traveling, but after repeat visits he started to run some more tests.  The first test result I received showed that my ANA was positive.  Because of the positive ANA my doctor sent me to a rheumatologist, even though he believed that I had lyme disease at the time, because I had been bitten by a tick a few months prior to the start of the symptoms, and I spend part of the year as a grad school student in New Hampshire.  The rheumatologist ran additional tests that ruled out RA and lupus, but I did have a positive SS-B, which she told me was a marker for Sjogren's.  Given my symptoms she thought that it was probable I could have Sjogren's but she also thought I should get treated for lyme.
I was treated for lyme disease with a month of antibiotics, but my symptoms have continued for more than 1/2 a year since that treatment.  I have been to many doctors since who have all said my symptoms sound like Sjogren's.  Additionally, I have had a positive ANA and a positive SS-B test result 4 times now. 
Since going to all the doctors I have also learned that I do have dry mouth and dry nose all the time.  I had never noticed before all of this started that I frequently carried a bottle of water with me everywhere.
I was wondering if anyone else has similar symptoms?  Or if anyone has had a similar onset?

[Scottietottie]

Hi Reabee 

Welcome to sjogren's world. I must admit I didn't have an onset like that - or such rapid progression - but the thing about Sjogren's is that it is a very individual disease. Although dryness is a common thread it affects us all differently. Symptoms appear in different orders and on different time scales and many never develop many of the symptoms at all. Some people get really ill and others are not so badly afflicted.

I hope you find the site useful. I'm sure you'll find friends here.

Take care - Scottie 

[Buzzybee]

Reabee2
I began 2006 vague generalized muscle pain and some mild  fatigue with itchy gritty eyes. Thought I had overdone as I am an active person outdoors and attributed the itchy eyes due to allergies. I am a nurse who loves my job. Over years fatigue and increased symptoms of joint pain widespread above and below the waist and everywhwere in between, numbness and tingling in my feet, imbalance and difficulties in concentration and focusing, Now i have extragtlandular involvemnt. My dryness of the eyes went from mild to severe and the mouth involvement increased over the years. I hav e sev ere dryness of both. Initially at first my tests returned Speckled ANA and slightly abnormal results with the other markers but  not enough to register. It was obvious there was  inflammation present and my doctor treatem my symptoms. I chose not to obtain the biopsies as I did not want to put myself through that. My eye doctor and dentist confirmed the same diagnosis of Primary Sjogrens in 2008. Punctual plugs help but after a while they may not seem as if they are benificial. Not to say that is not the case wtih others. I had mine removed in 2008. In 2009 an official dx of Sjogrens was agreed upon by healthcare team  after everything else was ruled out. Your symptoms will wax and wayne. Keep active. Each person is different. Agressive therapy in the beginning has caused me more issues now. So I am a minimilist with my medications and use altrnative therapies to aid my treatment. You may find dry needly therapy helpful (accupumcture) massage taichi water aerobics to help with pain and flexiablitiy. TENS unit is benificial. It is a frustating cycle. There will be people in your friendship or family  circle who do not understand your symptoms or feel you are not "sick" because you look ok. Find a good team of doctors and specialsist with whom you are comfortable and keep searching until you find that match. It is important that all your doctors communicate effectively with each other and one doctor coordinates your care, medications etc. Keep a positive outlook.  Good luck.

[CAT1962]

Hi, ReaBee2:

I started having some fatigue, insomnia bout 7 years ago. Within months my right foot hurt to walk. I was DX with Planters. Also, my feet would burn so terribly that my husband would have to wrap them in cold,wet clothes before bed (OCCASIONALLY, now they hurt/burn all day long). The last 3 yrs or so I have noticed joint pain, stuffness, some muscle aches, and unrelenting fatigue. I even asked to be tested for Lupus, but my previous GP would say, "Oh, you're getting old. It's arthritis, etc..." When I told my newest GP last fall about my frequent, unexplainable fevers, nausea, aches, she had me testes. Positive speckled ANA, high C-reactive protein.

I went to a Rheumy in November, and after many x -rays, and blood viles taken, and paperwork galore he told me that I "have Sjogren's disease". I do not take meds for it. My feet burn daily, I am achy to the point of total exhaustion, but want to use more natural methods for now. (New) I am taking Travacor at night. (Had some amino acid tests and vitamin def. tests done. I am low in several. I am starting kind of a POWER vitamin combo this week, as well as a probiotic for digestion.  I have a Neuro, too, that did an EMG and said my burning is small nerve involment, but not officially DX yet as Peripheral Neuropathy. The rest is in my profle below. Let us know what goes on and come back often.

[JannaLee]

Hi Reabee,

Welcome to the forum!  It is nice to meet you!

I think your story is very familiar to MANY people on this site.  Very likely you do have autoimmune disease.  Several of us (including me) have Sjogren's that presents like yours with less pronounced dryness issues and more intense "lupus like" symptoms.  

Unfortunately Auto-immune disease presents uniquely and differently to each person, probably that is why it is so hard to diagnose.  It can also morph over time from one into another.  For instance, there are a lot of people who initially had Hashimoto's disease (autoimmune that attacks the thyroid) for several years that eventually took a back seat to or turned into Sjogren's Syndrome.  

This also makes it frustratingly hard to predict the future.  I figure your next questions will be, "What should I expect?"  

Truthfully there is a chance you could
a. stay the same
b. go into remission and feel well for several years at a time
c. get worse

From what I understand a whole lot of people (maybe the majority) do the remission thing.

I encourage your search for the very best rheumatologist you can find.  

Sending you comfort, my dear!
Janna

[Joe S.]

Welcome Reabee.

While the initial onset may be slightly different for everyone, your story sounds typical. I am impressed that you Dr Dx'd it so quickly. Some of us go years before a Dx.

Find what management techniques work for you.

[Aquarius]

For decades I had unexplained fatigue and consistent ANA readings of 1:1280.  Autoimmune diseases run in my family.  Sicca started literally overnight.  It was sudden severe onset, nothing gradual about it.   

[Patze]

Hi Reabee,

Let me also welcome you to the SJS World and family!

Take care of yourself -

Patze

[Eileen]

Hi,

Your symptoms mimic mine almost exactly. I was diagnosed last July. It took me 25 years to get dx.
Over the years I believe I went into remission because I would have periods with no symptoms.
Six months leading up to a dx my symptoms were unrelenting to the point I didn't want to get out of bed.
I've been on Plaquenil since Nov., the symptoms have improved greatly, but are still there everyday.

[beverley]

In the Autumn of 2004 my eyes were so sore and raw that they looked like they were bleeding.  After lots of trips to Dr. I was referred to eye infirmary and the consultant did a Schirmers and discovered I had no tears at all.  She made the dx of SJS which I had never heard of.  2005 went to visit friend in California for three weeks.  Two days after flight home I had almost identical symptoms to you except my neck and shoulders siezed so badly that I couldn't move at all.  At this point the GP did bloods and discovered my ESR was 70 and I had a raised RF.  Something may well have triggered your exaggerated symptoms, in my case we think it was the menopause and stopping HRT treatment when I reached 50 years old.  However, when I think back, I know I had SJS long before.

Welcome to the boards, you will find lots of warm friends and support here, and a fund of experience and good advice.

Best wishes

[Reabee2]

Thank all of you so much.  Just being able to communicate with you all has made me feel a little less "crazy".

[LizPetillo]

I had light weight symptoms for a few years but didn't know it was Sjogrens.
Then April 2010 I got nailed .. overnight .. with everything.
A virus of some kind from going to a Flyers hockey game triggered it I think.