For Most Lupus Patients, One Diagnosis May Not Cover it All

Lupus is a systemic disease, meaning it does not discriminate when looking for areas of your body to attack. But many people don’t know that people with lupus also suffer from a number of “overlap” diseases. In my case, a common “overlap” disease ended up being my primary diagnosis (meaning that I never quite met all the criteria for the lupus diagnosis; my symptoms and blood work over the last six years have revealed that I have primary Sjogren’s Syndrome rather than lupus).

Common Overlap DiseasesCarie Sherman

Sjogren’s Syndrome. It’s easy for me to start there because this is what I have. Sjogren’s makes your moisture-producing glands malfunction, causing dry eyes, dry mouth, and dry mucous membranes (yup, pretty much anyplace you need moisture is lacking, good times). The fun doesn’t stop here though, folks! Along with these fun symptoms comes joint/muscle pain, fevers, and fatigue. My taste buds have been impacted–the love of my life (FOOD) isn’t all that enjoyable as I can barely taste anything that isn’t super sweet. I have chronic sinus issues and lately I think it’s been affecting my hearing and my ability to stay hydrated. Like lupus, organ damage can also occur, which is why I’m monitored every three months. Learn more. 

Raynaud’s Disease. One-third of people with lupus get this, too. Raynaud’s affects the cardiovascular system, restricting the flow of blood to your feet and hands when you’re stressed or it’s cold. Typically, the tips of your fingers turn white, blue/purple, or red. I’ve heard it can be painful and cause tingling and numbness as well.

Scleroderma. Scleroderma causes the skin and body’s connective tissues (i.e., the tissues that connect, support, bind, and separate our other tissues and organs) to harden. Like lupus, it can range from mild to severe. For some, it only impacts the skin, but it can also impact your organs, blood vessels, and digestive system. 

Rheumatoid Arthritis (RA). Like lupus, RA causes the immune system to attack the body’s own tissues. In RA, the thin membrane that lines the joints, called the synovium, is attacked. It causes a build-up of fluid in the joints as well as inflammation throughout the body. Also like lupus, it’s systemic, which means it causes fatigue,fevers, and pain.

Antiphospholipid Syndrome (APS). Here’s another fun one. APS is a blood disorder. It causes blood clots. Many women discover they have APS only after experiencing miscarriages or stroke. I have antiphospholipid antibodies in my blood. Since I haven’t had any blood clots, my doctor has me take a baby aspirin every day to keep my blood thin. Those who have APS may require much stronger blood thinners, and those with APS who become pregnant must be heavily monitored.    

These are some of the most common diseases people with lupus ALSO have. Just for kicks and giggles, here are some more:

  • Autoimmune thyroid disease
  • Celiac disease
  • Myasthenia gravis
  • Polymyositis
  • Dermatomyositis
  • Vasculitis
  • Thrombocytopenia
  • Anemia
  • Mixed connective tissue disease
  • Peripheral neuropathy

And some other conditions a lot of people with lupus have:

  • Depression
  • Anxiety
  • Fibromyalgia

And some of the diseases a lupus patient might be incorrectly diagnosed with:

  • Rosacea/psoriasis and other skin diseases
  • Lyme disease
  • Fifth disease
  • Multiple sclerosis

So after six years of working closely with my rheumatologist, I’m only now starting to understand just how difficult it is to diagnose people with autoimmune disorders. In addition to so much overlap and misdiagnosis, no two lupus cases are the same–other than being chronic and often debilitating.

You can help Lupus Colorado support patients living with lupus on Saturday, September 16, 2017 from 4:00pm – 7:00pm at the 2017 Lupus Colorado Community Walk. Learn more!