Diagnosed with Sjogren's, but not sure if my symptoms have anything to do with

[MichelleH]

Hi everyone

I am 32 and was diagnosed with Sjogren's and Fibromyalgia almost a year ago. I went to the doctor originally because I was tired all the time and had really bad joint pain. The rheumatologist believed it was lupus or arthritis. He ordered the works and test came back positive for sjogren's.  He told me that it only bothers my eyes and mouth, nothing more. That since everything was negative I had fibromyalgia.  From what I read fibrsjogren's doesn't cause the symptoms I have. It has gotten so bad now, that I cannot walk or sit for long periods of time. My back hurts and my knees start to really hurt. Sometimes it hurts to lift up my feet and climb stairs. I live in NY in a three floor walk up. It's not the best. My pcp through it was Ms and had me do an MRI.  To be honest most of my symptoms do go with ms, but my MRI came back clear. My rheumatologist gave me hydroxychlorquine, but it didn't work. If anything,  it made my eyes hurt so bad and they felt swollen.  He told me to only take one pill instead of two. I am tired of everyone looking at me and thinking its all in my head. It's not. I cry because I can't enjoy the things I once did with my little ones. Does this sound like symptoms that others feel? I need help, please. I am at my wits end. I just want to feel somewhat normal again and be able to play and do outings with my kids

[Deb 27]

Hi Michelle, sorry about the diagnosis.  However, I believe your rheumy is wrong. Sjogrens can cause joint pain. How long did you give the plaquenil to work for you? It takes plaquenil about 3 months to really do it's job.

Some tips that might help your fatigue: Get your Vitamin D checked, it's probably low. You can get a script from a Dr. for prescription strength Vit. D. Sometimes fish oil helps and going gluten/dairy free. A healthy diet with low fat meat, lots of veggies and some fruit/berries help to reduce inflammation as well.

I know you have children, but try to give yourself plenty of good sleep.

You can try for another Dr. if your current rheumy is not respecting your needs.

[Joe S.]

Welcome to the forum.

When you go to the doctor bring your advocate with you. They will hear things that you miss and help you get your point across to the doctor.

When you are given a prescription or want to try a new drug or supplement, check for side effects, counter indications and drug interactions so you know what to look for if you have problems.

You can see what some of us are taking by looking at our signature lines.

[MichelleH]

Hi Deb,

I think I was taking it for a total of six months. Before I started I never really had a problem with my eyes being dry. If I did I didn't notice. After my eyes were always dry and then started pain.  When I talked to my doctor about it, he said only take one pill. I stopped and honestly my eyes feel better.

I have been trying to get sleep, as much as possible, but I am always up going to the bathroom and honestly I just cannot fall asleep sometimes. I have started healthy eating, but never thought about the vitamin D. I will do that, thank you for telling me.

[MichelleH]

 Hello Joe,

Thank for the welcome. I am honestly happy I have found you guys. It is such a relief reading that some have some of my symptoms and I am not alone.

I never thought of taking someone to the doctor with me. I don't really have anyone to bring. I kinda strayed from friends embarrassed that I could in longer keep up. I tend to write everything down and then take it with me. I find that it helps even though I sometimes get looks. I am okay with that. I will make sure to look at the side effects from now on.  Thank you

[Blomst]

Hi and welcome!

Honestly, I'd suggest you try to find a new rheumatologist. Yours doesn't sound very competent, as both fatigue and joint pain are among the most common symptoms of Sjogren's. The idea that Sjogren's only affects eyes and mouth is a common misconception, however not many rheumatologists are this misinformed.

I too have pain/inflammation in lagre joints (mainly hips and pelvis/lower back) and fatigue as my most prominent symptoms. For me, a combination of plaquenil and methotrexate has helped to reduce the pain to a point where it's just bothersome, not crippling anymore. The fatigue is also improved.

I think the fact that we have gotten the disease at a young age (I'm 25 myself) might be part of the explanation as to why we are experiencing some of the symptoms before any real dryness issues have appeared. It's a more atypical progression of the disease, I guess. Most people are diagnosed with Sjogren's at an older age.

Hope that was of some help. Best wishes!!

[Carolina]

Dear MichelleH,

Welcome to our forum!  You will find information, support, and true attention to your issues.

The underlying problem for all autoimmune diseases/immune disorders is a malfunctioning Immune System.  A malfunctioning Immune System can attack any (or all) organs/systems in the body.  The result of the attack is Inflammation which can cause pain, fatigue, and depression.  The pain can show up anywhere in the body.

Think of how you feel when you have the flu.  THAT is the result of the Inflammation caused when your Immune System is fighting the virus.  A disordered Immune system also can attack your own body, causing the same inflammation, as well as the damage to your organ/systems.

ANY doctor who thinks that any Immune Disorder can affect only one organ is completely off the mark, out to lunch, simple minded and wrong.  Did I say that right?  FIND ANOTHER DOCTOR.  First ask around.

You are far too young to go through life without the very very best medical care you can find.

I recommend a major teaching hospital medical center connected to a major university.  Every state has one, and many have more than one.   I receive my care from doctors associated with Duke University in NC.

First, relax, and learn to focus on breathing.  When we are in pain and fear we hold our breath.......which doesn't help a thing.

Michelle, please keep us posted.  Do not be afraid when you read our various complications.  I am 74 and only in the very last few years have things started piling on.

And you are young enough that the latest and greatest advances will offer you help, I'm sure.

Hugs, and welcome again, Elaine

[MAT51]

I'm shocked that any qualified rheumatologist could tell you that Sjogrens only affects your eyes and mouth? As others here have said, you need a new rheumatologist, your present one is talking nonsense. Venus Williams was diagnosed with Sjogrens and it forced her out of tennis for a few years. Her main symptoms were terrible fatigue and joint pain everywhere. So you are in good company but you need a proper rheumatologist.

[quietdynamics]

I first sought medical help due to overwhelming fatigue, limb pain, nausea; dryness was the least of my problems.
Like you Dr. first thought was MS.  Specialist SJS/Lupus and Fibro, then Lupus was dropped.

Fibro is treated differently than SJS.. requiring its' own protocol. I take Cymbalta now for more than a decade and have benefited.
Here is information and a video from Stanford re: Fibro  https://sjogrensworld.org/index.php?topic=25284.0
Fibromyalgia  University of Maryland School of Medicine
http://umm.edu/health/medical/reports/articles/fibromyalgia

You do not say how long you tried hydroxychlorquine? Sometimes it is difficult to say if the eye symptoms are from the medication or from the medication causing a sensitivity to environmental factors.  An exam by an eye Dr (for at the least a baseline) would be good and use of drops (I like Systane.... with a gel at nighttime). Since you are in an apartment many of us need in winter when heat is  on to add humidity to home.

[belovedchaos1]

I think the fact that we have gotten the disease at a young age (I'm 25 myself) might be part of the explanation as to why we are experiencing some of the symptoms before any real dryness issues have appeared. It's a more atypical progression of the disease, I guess. Most people are diagnosed with Sjogren's at an older age.

Thank you for this Blomst! I too am in my 20's and dryness seems to be minor in comparison to all my other painful and odd symptoms. That makes total sense!!