Sjogren's and Overlapping Comorbidities

Once you are diagnosed with one autoimmune disease, it is really common that you will be diagnosed with more. Unfortunately, I live with multiple comorbidities besides Sjogren's disease. I have been diagnosed with four autoimmune diseases, including fibromyalgia and Mast Cell Activation Syndrome.

My first autoimmune diagnosis: PBC

Primary Biliary Cholangitis (PBC) was my first autoimmune diagnosis. After I received my diagnosis confirmation, I began researching PBC. I saw that a common symptom of PBC is dry mouth - something that affects me on a daily basis.

Connecting dry mouth to PBC and Sjogren's disease

And with more research, I found out from the PBC Foundation, a charity based in the United Kingdom, that Sjogren's is the most common autoimmune disease to have with PBC.

I started to research Sjogren's disease and saw that I was able to check off every box of symptoms:

• dry mouth
• dry eyes
• whole body pain
• inflammation
• fatigue
• sun sensitivity

Seeking answers: Blood work and a dual diagnosis

I decided I wanted to be tested and sought out a rheumatologist. My rheumatologist agreed right away when I told her I thought I had Sjogren's. She ordered a ton of blood work to check for Sjogren's as well as other autoimmune diseases. I ended up being diagnosed with Sjogren's disease as well as Rheumatoid Arthritis.

Symptom overlap

Besides living with multiple autoimmune diseases, it can be even more frustrating when new symptoms arrive or trying to decide which disease correlates which the symptoms you are experiencing. For me, a lot of my diseases have symptom overlap. It's hard to know for certain what autoimmune disease is the cause when I am having a flare-up.

New symptoms: Heat sensitivity and temperature dysregulation

It can also be tricky when I notice a new symptom developing. I've always been sensitive to heat and the sun. But about 2 years ago my symptoms started to become worse. A 5-minute drive in the summer heat would cause me to have hives on my arms.

I started having a hard time tolerating hot showers. Sometimes I noticed I would start feeling short of breath in the middle of a hot shower. Other times when I got out of the shower, I would feel really tired, sick and over-heated. I would notice that even an hour after showering, I would feel hot and sweaty.

My body struggled with temperature regulation. Something didn't seem right.

Exploring Mast Cell Activation Syndrome (MCAS) and autonomic dysfunction

I knew Sjogren's disease can cause autonomic dysfunction, so I brought up my increase in symptoms with my rheumatologist. She wanted to rule out that there wasn't anything else going on in my body.

She referred me to a specialist to be examined for Mast Cell Activation Syndrome (MCAS). We all have these mast cells in our bodies, but with MCAS, there is an increase in the cells which can lead to severe allergic reactions due to the release of extra chemicals in the body.

The physician told me I had 38 symptoms for MCAS, and he wanted to continue with testing. He ordered lab testing and, in the meantime, had me start treatment to see how my body reacted to the medications. He thought heat was a big trigger for me. My lab work came back negative. But after six months of being on a treatment regimen, I was able to notice an improvement in my heat related symptoms. He diagnosed me with Mast Cell Activation Syndrome.

Navigating specialized care

Now, a lot of my symptoms can also be related to autonomic dysfunction and Sjogren's disease. However, the hospital system I was working for did not have access to a specialist for dysautonomia covered by my insurance.

I'm in the process of changing hospital systems and I am hopeful I can find a doctor who specialists in autonomic dysfunction. It's not that I doubt I have MCAS, but I'm still symptomatic on treatment. I just want to be sure of a diagnosis and that we aren't masking my Sjogren's symptoms as something else.

Navigating autoimmune disease can be really tricky when your symptoms can correlate to multiple diseases.