Dysautonomia in Autoimmune Disease

I have had autoimmune disease for several years now.  Right now, lupus and scleroderma/MCTD are driving the immune system.  It’s been a journey of weird symptoms that have had profound effects on my body and how I live my life.  Those of us who have autoimmune disease understand that it is quite a process to get a diagnosis.  Autoimmune diseases themselves present a unique set of symptoms for each person. 

When I was having weird symptoms and dizzy spells upon standing, it took several specialists to help put the puzzle pieces (symptoms) together and give this latest set of symptoms a name:  dysautonomia. 

After a tough first year with pericarditis, I was having continued nerve symptoms like tingling in extremities, sharp nerve “zaps”, dizziness/woozy feeling upon standing, palpitations, chest pains, shortness of breath, and extreme fatigue with just basic exertion.  Sound familiar? Thankfully, my rheumatologist, cardiologist, and pulmonologist sent me for special testing. I also saw an autoimmune neurologist, who was amazing and validated so many of my symptoms. I was finally diagnosed with autoimmune dysautonomia.  My team of providers then worked together to prescribe a plan of medication, diet, physical therapy, and patient education that allowed me to navigate this next hurdle in my journey.

What is Dysautonomia? It is complicated, so I will try to keep it on the simpler side.

The basics: Dysautonomia is a disorder of the autonomic nervous system, or ANS for short.  The ANS is divided into the sympathetic and parasympathetic nervous systems. The sympathetic nervous system is responsible for critical functions like pulse, blood pressure, “flight or fight” type reactions.  The parasympathetic nervous system performs critical functions like digesting food and promoting relaxation in organs.  The ANS performs critical functions in the body's nervous system that are “automatic, things we don’t think about, like our heart beating or breathing. Other examples are blood pressure regulation, body temperature, digestion, and sweating, just to name a few. 

An example of the ANS properly working is when you stand up, your heart beats a bit faster to pump the blood against gravity, providing oxygen to your cells, brain, and muscles.  Special nerve cells throughout the body react to standing up by clamping down a bit on vessels to keep the blood pressure steady against gravity as well, allowing the blood pressure to get the blood to your brain when you stand up. These amazing systems and reactions within the nervous system allow you to be able to move about when standing or walking and not pass out.  Another example of the ANS in action is digesting food in your body, from saliva in your mouth to the peristaltic movements throughout your esophagus, stomach, and intestines to move the food through the gastrointestinal system. Someone with dysautonomia or impairment in the ANS may experience nausea, bloating, and motility issues in the gut from impaired function.  Others may experience mood swings, brain fog, and trouble sleeping.

In autoimmune disease, the immune system can attack various receptors, nerves, and bodily processes, so the autonomic nervous system cannot do its critical job very well. Those “automatic” processes can misfire, become weaker, or nonfunctional in severe cases.  Autoimmune dysautonomia is a tricky diagnosis to make, and usually, you need a team experienced in dysautonomia to sort it all out.  POTS or Postural Orthostatic Hypotension Syndrome and Small Fiber Neuropathy are examples of dysautonomia. 

Dysautonomia is very complex, and having a great care team is essential.

Once your team has helped sort out your symptoms, the goal is to manage them to help you live your best life.   My dysautonomia symptoms were quite challenging, as I had really low blood pressure that caused a lot of my symptoms.  Medication, along with a high salt diet, lots of hydration, and compression stockings, helped me navigate some of those symptoms. I also collaborated with a physical therapist on strengthening my muscles, balance, and pacing myself in my daily activities. When I’m not feeling well, those dysautonomia symptoms are more pronounced.  I must really rest a lot when that occurs.  My team has also given me guidance in adjusting my daily routine and medication to manage my “bad” days accordingly. Allowing ourselves to rest on bad days is a challenging process!  Through this journey, we must honor what our body is telling us.  I find I really struggle with this bit of sage advice.  I just want to do what I want to do!  It’s a journey for sure, and I’m still working on managing all of this!

Although dysautonomia is quite challenging, it is a condition that can be managed.    Having the support of your inner circle, medical team, and support groups makes it doable.  My overlapping autoimmune disease has forced me to be more aware of my self-care. I encourage all of you to navigate this incredibly challenging autoimmune journey by remembering to look at how you are helping yourself. 

Take time for you! 

 If you’d like more information, The Lupus Encyclopedia by Dr. Thomas is an excellent book reference on lupus and all its related parts, and he also has a website (lupusencyclopedia.com).  The Cleveland Clinic has an easy-to-understand website as well (my.clevelandclinic.org).  Dysautonomiainternational.org is another amazing website from a national organization on dysautonomia. It is full of information on this disorder.   

Written By:

Jill Nelson, NP, Wife, Mother, and Lupus Patient

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June 2025