Friday, April 1, 2016

How Sjögren's Has Affected Me

Photo courtesy of the Sjögren's Syndrome Foundation

Today is April 1st, the first day of Sjögren's Syndrome Awareness Month. Despite the fact that Sjögren's is one of the most common autoimmune disorders out there, most people have not heard of it and many doctors do not know how to appropriately treat the illness or its complications.

The Sjögren's Syndrome Foundation put out a blog post today which included an updated human diagram of the different systems that Sjögren's affects. Oftentimes, Sjögren's is looked at as solely an illness that causes dry mouth and dry eyes. To start with, the dryness that accompanies Sjögren's is no small matter. Dry eyes can cause serious ocular complications, including vision loss and dry mouth can cause difficulties with swallowing and rampant tooth decay. In addition to dry eyes and dry mouth, Sjögren's can adversely affect just about every system in the body, as illustrated in the SSF's diagram above.

I have been doing this blog for a while now, so I don't remember if I posted about my specific Sjögren's symptoms, but I seem to think that I never have done so. This blog entry is going to be about that...the Sjögren's related symptoms that I have had to deal with since my journey with this illness began. Please don't panic! It does not mean you will have the same symptoms or even have it as severely as I do. But, it is important to be as informed as possible. Only YOU  are going to be the person driving the bus towards wellness.

* Dry eyes: An eye doctor picked up on this well before I even noticed my eyes were dry. I believe it was probably my very first symptom and it occurred well before the disabling symptoms occurred in 2008. The first eye doctor I had picked up on the dryness during a routine eye exam and I completely blew off his suggestion to start using eye drops regularly. That was, until the dryness became uncomfortable and once that happened, there was no going back. I have experienced mild corneal abrasions from the dryness. The abrasions have not been a problem since I started working with my new eye doctor. He diagnosed me with Meibomian Gland Dysfunction which subsequently changed the treatment I was doing. The dry eyes are still a daily issue for me, but the severity has lessened some.

* Joint and muscle pain: If you've read my story in my book Tales From the Dry Side, you will know that joint pain was the first major symptoms I had that became disabling. Muscle pain followed a few years later. My joint pain often occurs in my finger and toe joints, wrists, elbows, shoulders, ankles, and knees. The muscle pain is widespread The intensity varies dramatically and is oftentimes activity dependent. I have also noticed a trend in stress and diet exacerbating my pain levels. The treatments I have tried are numerous and if you want details, please feel free to e-mail me.

* Respiratory difficulties: This is a tough one for me to describe. It was the second debilitating symptom I had which started in 2008. I call it asthma just for simplicity, but it is not asthma in the traditional sense. My pulmonologist has also called it reactive airway disease. I have had abnormal pulmonary function tests and at times have required inhalers that are typically used for COPD. This particular issues has improved dramatically for me in the past few years, since I started getting allergy shots actually.

* Reflux and esophageal motility disorder: I have had some serious bouts of reflux since getting sick. At one point, in 2012, I was vomiting all of my food and ended up hospitalized. After more tests than I care to recount, I was told that I have an esophageal motility disorder called nutcracker esophagus which means the muscles in my esophagus don't contract and relax the way they should. Medication helped tremendously for a while and I was able to wean off of it. Once in a while, it acts up on a much smaller scale. The reflux is being controlled with alternative medicine supplements.

* Interstitial cystitis (IC): I get angry about this one. I suffered with what felt like UTI pain and symptoms on and off for almost a year before somebody recognized I had IC. I kept getting tested for a UTI and then was told the symptoms were in my head. It took a third doctor (a urology specialist) to diagnose me correctly. I had a procedure done and changed my diet and I have been stable for several years now.

* Fatigue: If I could get rid of one symptom for the rest of my life, this is it; even more so than the pain issues. Because no matter how much rest I get, if I am not on steroids, I am chronically exhausted. I do have a little control over the fatigue in terms of getting a lot of rest and/or watching my stress, but it never really goes away. There are just varying degrees of it. And, it really affects my day-to-day life, my ability to work, and my relationships.

* Dry mouth: I didn't develop this symptoms until I had been sick for a few years. Once I did, my mouth went haywire. The biggest difference in the severity of my dry mouth has been seeing an oral medicine doctor.

* Salivary stones/blockage/infection: Due to the lack of salivary flow and changes in the consistency of my saliva, due to Sjögren's, I have developed salivary stones. I also get swelling. On one occasion, I got a major blockage and infection on one side that required steroids and antibiotics to clear. The oral medicine doctors suctions out the stones every few months, which has helped me significantly.

* Neuropathy: This is something I am currently in the process of being tested for. I would say for me, it is the second worse symptom, after fatigue. Peripheral neuropathy causes nerve pain and itching in my legs and feet, sometimes making walking a huge challenge. I have also been experiencing dizziness from changing positions and from standing more than a few minutes. I have come very close to passing out more times than I can count. I'm also experiencing dramatic temperature swings. This may all be related to something called autonomic neuropathy. The jury is still out on that. But all the evidence is pointing that way.

* Dry nose: This has resulted in painful sores and staph infections in my nose.

* Dry skin: Probably the lest dramatic of my symptoms, but annoying enough to merit a mention!

* Raynauds: This is a lovely disorder that occurs when your hands and/or feet experience severe cold intolerance and this impacts your circulation. The hands/feet undergo color changes and the process can be quite painful.

* Sinus inflammation/infections

* Brain fog/memory loss: I had testing done several years ago that showed I had memory loss. Since then, I have been working hard on my memory issues, but that, as well as the brain fog, is still very much an issue at times.

* Rashes/photosensitivity: The frequent rashes have diminished over the years, but I still have a really bad time in the sun. When my husband and I were in Florida a few years ago, despite using SPF 50 liberally, I got a horrible sun-related rash that took days to get under control.

The above list included the symptoms that are related to Sjögren's. There have also been a few other issues that MAY have been related to Sjögren's, but no definitive relationship can be proven:

* Gallbladder disease: Obviously, many people without Sjögren's have gallbladder disease and I had several risk factors associated with it. However my observation and research has shown me that gallbladder issues are very common in people with Sjögren's.

In addition to that, I have been experiencing a lot of stomach upset and diarrhea over the last few months. I had my gallbladder out in November of last year. I did recover but I don't know if these GI issues are related to the gallbladder surgery or if they are autoimmune related. I will be honest, I have so much going on right now medically, it's on the back burner.

* Guillain-Barre syndrome (GB): This happened to me in 2012 and it was seriously one of the scariest things in the world to go through. I was fortunate enough to have a mild case. There is no correlation between Sjögren's and Guillain-Barre, but GB is also an autoimmune disease.

* Hypothyroidism: My doctor cannot determine if my hypothyroidism is related to radiation treatments I had years and years ago, or if it is autoimmune in nature.

* Vocal Cord Dysfunction: I don't know of a correlation between this and Sjögren's, but I do know many Sjögren's patients who have experienced vocal cord dysfunction.

* Migraines: I never had migraines until I had other Sjögren's symptoms, so why knows!

I would be interested in hearing about what Sjögren's symptoms you or your loved one have experienced. Please feel free to comment below....


  1. Thanks for posting your symptoms. I have so many of the same symptoms, but my blood work always comes back with a negative ANA. My rheumatologist did say that I could have primary Sjogrens & have negative blood work, but I can't find anyone who will look at all of my symptoms together & diagnose me. I have had an extremely dry & sore mouth for over 28 years & had a parotid gland removed 8 years ago that was benign, so that doesn't help the dryness. I now have chronic dry eye & can no longer wear contacs & have to use Restasis twice a day. I was diagnosed years ago with fibromyalgia because due to aching all over & fatigue. Last winter I was diagnosed with Raynauds, also. I also, have gastroesophageal reflux & have been having a lot of nausea lately. I did have my gall bladder remove 16 years ago. I had thryroid cancer 6 years ago & the radioactive iodine & surgery didn't help my dry throat & swallowing issues. I had a hysterectomy & a malignant granulosa cell ovarian tumor removed 4 years ago & see a gynecology urologist every 3 months to monitor that. I also have frequent bladder infections, sinus infections & a chronic cough. I see so many different doctors that just look at the issues that are their specialty & I think I need someone who will look at everything together. I live in Nebraska & have been considering going up to Mayo Clinic in Minn. to see if I can finally get everything figured out. Have you ever known anyone who has so many of the Sjogrens symptoms but tests negative. Thanks for your blog as it really helps to clarify a lot of things.

    1. Yes, me! I have always tested negative on my SS labs and I'm pretty sure always negative on my ANA.

      My first lip biopsy, which I was initially told is accurate for diagnosing SS, was negative. A few years later, it was unquestionably positive.

      I understand what it is like to have each specialist look only at their particular body frustrating. I am fortunate enough to finally have a rheum that looks at the whole picture and communicates with my other specialists as needed.

      I know several people with SS who had excellent experiences at Mayo, so I say go for it!

      Thanks for sharing!!

  2. Parotid gland swelling! Holy moley it is sore & I look like a chipmunk! So embarrassing and painful! Any tips for dealing with it?

    Also, during a flare I get Raynaud's, fatigue, joint pain, severe upper abdominal pain and muscle spasms and have previously had associated low platelets.

  3. Even though your tests are negative does the Dr. say that you have Sjogrens? I haven't had the lip biopsy, but have had the eye test with the strip of paper & my eye Dr. said that my eyes are dry as a desert. If I decide to go to Mayo, do you think I should ask to see a rheumatologist? We have been there several times with our son who had an accident & know what a great facility it is.

  4. Kay,
    I have had the same difficulties!I saw a rheumatologist and I told her all of my symptoms and even created a timeline for the 2 years since I had began experiencing the random issues. However because all of my blood work came back negative for Sjogrens she wrote me off and said I only had fibromyalgia. Being a healthcare worker, I knew that I had to be my own advocate, besides I had done my research and knew very well more than 40% of Sjogren's patients are serum negative. I found an immunologist a few years prior to all of this and I was greatly impressed by his knowledge in general, so I made an appointment to see him. After one look at my list of symptoms he said it sounds like Sjogrens to me! Since it is not his area of expertise he told me he couldn't "treat" me for it but he could act as a "quarterback" of my care. He got me to the right doctors, and I had a lip biopsy that was positive for Sjogrens. My blood work is still negative four years after all of the problems began! I am affected a great deal like Christine with a few differences. Trust your gut, if you know more than a doctor does about Sjogrens find another, and maybe another, and so on. I too am so tired of the multiple doctors visits, but we have to do what we have to do. Good luck!