Sorting through this mess - Sjogren's ? If not, what ?

[Northernelf]

The ongoing fight ? It's been over five years...

Wading through joint pain, fatigue, a diagnosis of fibromyalgia new symptom is glandular pain around neck and jaw. I have dry eyes and mouth and was thinking maybe Sjogrens but ultrasound of glands show my parietal (jaw) and submandibular (under chin) salivary glands are symmetrical and normal although my stand in GP says that doesn't rule out Sjogrens (only a lip biopsy would which I think I will investigate).

Anyway my lymph nodes in my neck ARE swollen and painful. It's been almost four months that I've been experiencing this symptom. I've been on two rounds of antibiotics and a round of prednisone and yet here I am this morning with a lot of pain jaw, throat, glands, whole body.

Any ideas, experiences with this sort of thing, my latest symptom ?

I give up, I quit, as if I could. I also have "hypogammaglubulinemia, likely CVID" according to my immunologist, although only my IgGs are low (I inject plasma to bring them up).

Last night I didn't take my ampitriptyline, the only drug I am on (other than tylenol here and there as I can't tolerate ibuprofen).  I'm going to go drug free for a bit. My GP is away so I got my results from a stand in who went on about how at 47 our bodies don't heal as well and lets test your hormones because maybe it's perimenopause. Huh. Hormone replacement will help stabilize things, etc. Well, I'll do the blood work as that is simple but hormone replacement is not an option (my mom was on it for ten years and has just finished recovering from breast cancer). I kinda think this guy is full of it anyway.

What our docs don't get is that we are trying to function day to day with huge amounts of pain and fatigue, I guess they don't see that in the few minutes we see them. I need answers - so many of my symptoms point to lupus or RA or some autoimmune (even this one) but my blood work is not showing any of it. I worry about long term damage, finally figuring it out AFTER I have some permanent damage to my body. *insert silent scream here*

[Joe S.]

Since a Sjogrens is a Dx of elimination, it may take 7 years to get a Dx. Often the lip test shows nothing, is painful, and takes a long time to heal. I got my Dx by asking, "Dry eyes, nose, mouth, skin and @$$: what do you think it is?" he said S.I.C.C.A.

Most of the meds I experience side effects from so I have had to find alternatives. I have listed some in my signature as other have done. Please check for side effects, counter indications and drug interactions before trying anything.

For your glands, try a mumps scarf at night. I have tones that help me with my symptoms.

[cccourt1942]

Hi N'Elf,
    I am old..and was dxed by the time I was old.  I estimate my hard, recognizable symptoms started by my late forties.  However, my glandular involvement didn't hit until I was about 65.  And as you described so well, hits, hurts, and debilitates.  I had those symptoms, infections chronically for 5 years accompanied by burning tongue and dry mouth (along with decades long dry eye probs) overtook the sialadenitis I suffered from the salivary glands.  It was NOT my ENT who treated me all of the time for the salivary bacterial infections.  At times I couldn't get in...and saw my GP.  The ENT even denied my SjS after I saw him shortly after my dx.  I gave him results of the tests (done by rheumy) and he literally told me he didn't know what "those" meant.  He denied I had SjS.  I took it that ENTs only know lip biopsy.  Doesn't matter.  My message to you is how I can recall the chronic disturbances of those glands stopping me in  my tracks.  I lost about 20 pounds the first couple of years...but the burning tongue/dry mouth added on to them resulted in about 15 pounds more.  I finally learned to keep puddings, yogurts, and other soft (and sweet) foods.  Stopped that weight loss. 
    Having been on this forum nearly three years, and reading the messages of obtaining dxes, I really believe we must get to a certain stage..for many of us.  There are exceptions.  I never searched for an answer.  Because I was older I thought it was a product of aging. I was still working part time, and the dry mouth interfered dramatically with my work (speech therapist).  The sialadenitis could be stopped with an antibiotic and at times accompanied by Medrol pac, but I was dismayed I had to live with that condition chronically the rest of my life.  At this point (3 years post dx) I have had to intervene with antibiotic for that condition two or three times in the last two years. (because I only have one functioning salivary gland.  The other major ones are atrophied.)  And I don't know if a dx would have arrested that  gland damage.  I believe the progression (for ME) was slow and steady...and damaging.  My lacrimals and Mieobians are shot too. 
      If you have dry mouth (you didn't mention) you can get one of the meds.  I take pilocarpine.  I use Restasis for my eyes (tho you don't mention that either.)  Just saying in case you do have these discomforts: most MDs and ophthals will give you Rxes for those even dxing sicca symptoms.  It's a comfort thing. 
      At forty seven you are progressing more rapidly than I did.  At your age the fatigue and aching hit me..and hit me hard.  I was diagnosed with condition  du jour of fibro...but no real test for it.  Years later of course they knew what was wrong.  I must have gone thru waxing and waning..as I did retire in early 60s and as stated, continued to do part time (3 to 4 days a week) until I was 71.  I was widowed, had no real responsibilities but for me.  Simple life, yet busy.  Still traveled, etc, but my gait and ability to stand tall was diminishing.  Again, for me, tht it was age.  All I can tell you is my diagnosing rheumy was more surprised than he could express.  He apologized for nearly waving me off.  He actually said he'd draw blood yet thought I had sicca.  Which was fine with me.  I didn't know what Sjogren's was.  At that time I was: give me meds...and i'll get back to work.  I was 71. 
      Tune into your body and try to determine if you are suffering any other symptoms other than the sialadenitis.  I think you will recognize some discomforts yet not anything that bothers you enough to stop you from your daily work, life, activities.
     You have joined a unique forum filled with a plethora of members who have suffered conditions I know nothing about and hope I never have to...and then those who do suffer from my symptom bank and help me when I need guidance and support. 
     Hope your glands are receding.  Google salivary gland massage (I call it upside down, backwards J) and also warm compresses when the swelling hits you.  NOTE: WARM. (I've burned my neck with HOT ones more than once!)  Also, I learned to hold 3 to 4 of my antibiotics for the next attack.  Drs do NOT like this.  But if it hit me on say a Friday p.m., I couldn't get to dr. until Monday.  I went thru several week ends with zero help before I learned to do this.  Don't let them give you a Z-pac.  It's finite. 
  Welcome ...have a good Sunday. 
Sjoldier c3

[Jasper]

Your symptoms could definitely point to Sjogren's Disease.

Your symptoms are also common in CVID.

If you have CVID, your blood tests are probably not going to show any positive antibody results to Sjogren's Disease (or many other autoimmune diseases) because, with CVID, your body usually cannot make the antibodies to the various autoimmune diseases.

People with Autoimmune Diseases are often misdiagnosed with Fibromyalgia. It is an easy, garbage can diagnosis. If they diagnose you with Fibromyalgia, they don't have to keep looking for the real problem and they can brush you off with there is nothing they can do for it. I don't know if they are just lazy, uncaring, ignorant, or all of the above. If anyone told me I had fibromyalgia, I would run out of that office and never go back. I would find a doctor who is willing to find the real problem and treat me. 

The ultrasound tests of the glands can be helpful, but if they are not done correctly by a very experienced person and are not read correctly by a very experienced person, the results are not helpful and may be misleading.

The lip biopsy (salivary gland biopsy) is the gold standard for diagnosing Sjogren's Disease. The main thing is to be certain that the oral surgeon or ENT doctor is very competent and experienced in performing the biopsy and that the pathologist who interprets the specimen is very competent and experienced in interpreting the results.

Most lip biopsies go very smoothly and there is minimal discomfort. The incision is tiny and is on the inside of the lower lip. The doctor numbs the lip, makes a very small incision, takes a sample of salivary glands, and puts in about 2 tiny sutures. The sutures fall out on their own. I had one and it went very well. It was sore for a couple of days and I took a couple of Tylenol. That was it. It healed up with no residual problems.

The enlarged lymph nodes should be investigated. Both CVID and Sjogren's Disease carry an increased risk of lymphoma.

I would suggest seeing a Rhuematologist at a large university medical center. They are more likely to be current on diagnosis and treatment.

You don't say where you are located. Many of us have good Rheumatologists and could recommend a Rheumatologist or a facility if we knew where you lived. Even if you have to drive a ways, it is worth the drive to see a competent Rheumatologist and get competent treatment.

http://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/common-variable-immune-deficiency/ 

http://www.sjogrens.org/home/about-sjogrens/symptoms

[Vita]

Hello, I'm new....and crazy from all the new symptoms. My lip biopsy is scheduled for February 2017.  The swollen glands began for me in August 2016. My PCP prescribed me amoxicillin after a diagnosis of tonscillitis, he also gave me a referral to see a rheumatologist. Five days after starting it, the glands in my groin, underarm, neck and breast became painful and tender.  I stopped taking it, however, the glands stayed swollen, especially under the arms and in the breasts. October 2016 the rheumatologist had no idea what this was, he is at Penn State Hershey. My ophthalmologist diagnosed the dry eye since 2013 and started me rolling on a referral to an endocrinologist in February 2016. Which determined my Sjogrens's antibodies were in normal range. 
I have SSA and SSB antibodies, they are just not high.  The rheumatologist refused to order more blood work, he insists on a biopsy.  My neck also burns on the outside, my tongue is swollen, my throat is always dry, my hair is shedding like CRAZY, my libido is gone and the vaginal dryness is a problem. My mouth is kinda dry but my parotid and submandibular glands remain slightly swollen most of the time. Oh and I have joint pain, knees, elbows, fingers, ankles and tingling burning too. The rheumatologist said to me 30% to 40% of people with Sjogrens's don't have antibodies. So my husband says if that's the case, you have antibodies and symptoms, even if the antibodies aren't high enough,why won't they give you a diagnosis because most people don't have ANY antibodies whatsoever?... Hopefully that made sense, lol.
I'm considering returning to my PCP for the gland swelling under my jaw and under my arms.  He seems to be the most alarmed by my symptoms. Everyone else looks at me like I'm a fruitcake. They don't seem to understand, I homeschool my five and six year old. I'm forty and run a household, who's going to cook and clean for my family? Being a mother and wife while being sick is like wearing a snowsuit and trying to jog.  You can't see Sjogrens's, but you can feel it and no one can tell, not even doctors.  It's almost as if you are wrong by asking to be acknowledged and correctly diagnosed. The endocrinologist had the nerve to tell me maybe my anxiety was causing my symptoms. I told him anxiety never made my vagina dry, hahaha, probably shouldn't have said that. I guess like a lot of other women with Sjo I feel frustrated.
I live in SouthCentral, PA and Bausch and Lomb offers the Sjo test in my area. My husband said if my lip biopsy comes back negative we will get the Sjo test done. It is supposed to identify biomarkers that are associated with early Sjogrens's Syndrome. Thanks for reading this and hopefully it made sense. Just to clarify I have been feeling flu like since December 2014. After a stressful period in July 2016 is when all the other strange things started happening and my symptoms intensified.  Beware of stress. It is your enemy BIG TIME.