By Suzanne Stewart
Have you ever felt so hot; sweating so profusely and you thought you might spontaneously blow up from the inside out? That is how those who live with Dysautonomia feel much of the time. If the temperature drops and we get just a little bit cold, then we are freezing cold, our lips turn blue and we are shivering. It takes our bodies a long time to regulate when there’s a temperature change. We may start to sweat and feel so very hot from the inside out!
Many people don’t seem to understand the fatigue, heart racing, inability to adjust our body temperatures, the GI upset, motility issues, inability to sleep or the pain. All of these feelings fall under this medical condition called “Dysautonomia”. It happens to someone when their Autonomic Nervous System has gone berserk! (The Autonomic Nervous System or ANS is every system in the body that is involuntary. This means the G.I. tract or digestion, Respiratory -breathing, Heart Rate, Pulse, Blood Pressure, Body temperature and other involuntary brain functions as well1).
Quite often those with Dysautonomia also live with Postural Orthostatic Tachycardia Syndrome. POTS causes feelings of being light headed, fainting, dizzy, fast heart beat or tachycardia, chest pains, shortness of breath, GI problems/issues, inability to exercise, and sensitivity to heat and cold, as I mentioned above with Dysautonomia. Some people actually do faint while moving their body from the laying down or sitting position to standing upright.
The diagnosis for POTS is usually made when a heart rate increases approximately 30 beats per minute (bpm) a few minutes after standing. Some people with severe cases of POTS, might need to get a pacemaker.
There also may be other heart problems going on besides the Dysautonomia/POTS; as in my case. Many times POTS shows up in women who appear to be “normal and healthy” on the outside. Researchers have found that these issues and symptoms are actually as disabling as such conditions as COPD and CHF” (*this information was found on “Dysautonomia International” website).
Another common diagnosis for persons with ANS dysfunction or failure is “Arnold Chiari Malformation”. This is something that a person is born with but it usually goes unnoticed until they have symptoms and then an MRI. It happens when the brain stem swells and doesn’t fit very well into the spinal column. It causes great headaches called “Chiari Migraines” in the back of the head. In my case I’m unable to hold my head up for a very long period of time because it feels weak and painful. “Chiari” can cause a number of disturbing issues for those who live with it. Some of these are: migraines, fatigue, muscle weakness, slow heart rhythm, Scoliosis and Central sleep apnea.
There are many “faces” to Dysautonomia, with its different symptoms and illnesses. I’ve mentioned some of them, but there is so much more to this “Invisible Illness”. For example; there are a number of other health issues associated with it and people don’t realize that some of these are linked together. Some of these are: CRPS or Complex Regional Pain Syndrome, Gastroparesis, Ehler Danlos Syndrome (EDS), CFS/ME and more.
Many times patients feel like they are just living with many different ailments. Some physicians think that their patients with all of these different “issues” are just complicated. They don’t always look at how all of these ailments could be the many pieces one “puzzle” that all fit together because they are all under this “umbrella” of Dysautonomia.
Over 70 million people worldwide are living with various forms of “Dysautonomia”, which can cause a malfunction of the Autonomic Nervous System1. Please try and remember these things when you see someone who appears to look fine or “normal” on the outside. If they take a Handicapped parking spot, they need it and their Dr. has approved it! People don’t have the HC placards for fun. Please don’t be mean or rude. Don’t say something sarcastic or unkind. I’d rather that you just ask me if you have a question about my disability status. I’m not required to answer you, but I will because I want people to know. You just never know what is going on inside of someone’s body.
I hope this bit of information has helped you to understand POTS and Dysautonomia a little bit better than before. If you have a friend or family member with these illnesses, please give them the benefit of the doubt, when they are not feeling well. If they’re exhausted for what you think is “no good reason”, if they’re tired because they were up several nights in a row, due to their pain, or illnesses; please don’t judge. The worst thing that you can say is “well you were up til wee hours of the morning, so it’s no wonder that you’re tired”. We cannot sleep like you “non ill” persons can sleep. Just please be kind if we are not always at our best and/or if we have to cancel an outing with you.
- Some of the statistics or specific medical information was taken from the “*Dysautonomia International” website at www.DysautonomiaInternational.org. But all the rest is in my own words, my feelings and from my own personal experiences that have happened and that are still happening to me every day.
Suzanne suffers from full body CRPS and has lived in chronic pain since 1999. Before being disabled by chronic pain, she was an Interpreter for the Deaf at University of Michigan Hospitals and for several school districts, working with children. Today she is a patient Health Advocate, guest writer, blogger and fundraiser for RSDSA and an Ambassador for U.S. Pain Foundation and creates Advocacy videos, and writes in her own blog “Tears of Truth” (suzydukettes.wordpress.com).