Autonomic Neuropathy/ disregulation (also known as Dysautonomia) is a really a huge pain in my butt. This is probably my most troublesome condition in my day to day life. The autonomic nervous system controls all of your involuntary bodily functions like your heart rate, breathing, maintaining proper blood pressure, digestion, sleep cycles, body temperature control, sweating and more. Pain…well that is a part of my everyday life but most days I can manage that…I know what to expect. Dysautonomia is another story. It has such a wide array of symptoms that come and go…it is like playing whack-a-mole!! You can’t get a handle on it because it is so unpredictable. The symptoms can also interrupt your life in every way. Today I cannot stop sweating, but tommorrow I may experience incontenience or fainting/dizziness.
The term Dysautonomia means dysfuntion of the autonomic system. One form of dysautonomia that you may have heard of is called POTS (postural orthostatic tachycardia syndrome) but there are at least 15 kinds of dysautonomia. Sometimes this dysregulation is secondary to other diseases. That is what mine is…my doctors feel the likely culprit is Sjögren’s syndrome or Rheumatoid arthritis.
Dysautonomia is an umbrella term used to describe different medical conditions that cause a malfunction of the Autonomic Nervous System. The symptoms of dysautonomia, which are numerous and vary widely. It affects every part of the body and is very unpredictible. Symptoms can vary from mild to very severe.
Some of the symptoms associated with Dysautomnia are:
- Dizziness/fainting with standing (orthostatic hypotension)
- Abnormally fast or slow heart rate
- Anxiety or mood swings
- Dramatic swings in body temperature
- Excessive sweating or not being able to sweat
- Extreme Fatigue
- Feeling short of breath (especially when you exercise)
- Feeling thirsty all the time
- Having trouble swallowing
- Headaches
- Insomnia
- Nausea and diarrhea and other gastrointenstinal issues.
- Vision problems (blurred vision, vision loss, tunnel vision)
- Sexual dysfunction
- Impaired memory and/or concentration
- Sensitivity to sound or light
- Blood pooling in hands and feet
- and more
Dysautonomia comes with a wide range of disability – from mild, to very disabling, to death in certain rare cases. Although it is not curable, you can learn to manage symptoms most days. Getting treatment for your underlying condition (if your dysautonomia is secondary)can also help to control your symptoms. Simply lying down, or at a minimum putting your feet up, can help you feel a bit better.
I take beta blockers to keep my heart rate from fluctuating wildly. I drink electrolytes and use a fairly large amount of salt (especially on flare up days). Putting my legs up makes a significant difference in how I feel…and standing still is the worst! I drink a LOT of fluids and sleep with my head and feet elevated.
People of any age, gender, or race can have dysautonomia. It affects millions each year, yet it often takes years before being diagnosed. That is one of the reasons I started this blog and why I try to talk to people openly about dysautonomia and other “invisible” chronic conditions- Awareness!
