The Many Faces Of Dysautonomia

The Many Faces Of Dysautonomia

By Suzanne Stewart

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.


  1. 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).

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Authored by: Suzanne Stewart

There are 15 comments for this article
  1. Jennifer at 7:22 am

    Please do more research on chiari malformation. It is not swelling of the brain that causes it to herniate through the opening of the foramen mangnum. Chiari malformation occurs when the base of the skull is not formed correctly, thus leaving the brain with not enough room. This causes the herniation. The head pain we get with chiari malformation should never be referred to as migraines, even when using the word “chiari” in front (as in “chiari migraines”; the phrase used in the article). When using the word migraine, this does a disservice to the debillitating head pain chiari patients suffer. Not only did I have 24/7 chiari head pain prior to decompression surgery, but I also experience migraines. They are two vastly different beasts. I would gladly have migraines any day over the chiari head pain.
    Also, if your head feels to heavy to hold up, please have your doctor test for cervical instability. This is often a comorbid condition for those with chiari.

  2. Sylvia M. Brown at 5:31 pm

    People with RSD if possible need to exercise. My great doctor in Sacramento who has got me back my old life mostly says we need to exercise twice as much as others do, and I agree with Leah Salby, because I rode 50 to 65 mile rides for charity, played racquetball, lifted weights, and so on. I’m able to fish, walk a good distance, like I hiked to the Ancient Ruins of Tulum in December, went snorkeling, walked on the beach. I exercise laying down to not put so much weight on the foot I damaged after having RSD in all my limbs to my fingers and toes, but ECT saved me. I wasn’t able to lift my feet off the floor, get into a car, and I cried in my sleep as my husband told me. I’m thankful for good medical care and good doctors who i’ve had for years. I’ve had RSD for 15 years. Thank you for sharing with us all of you. Oh, and over doing it is not good, but if you’re in good shape already then you generally do more. Without exercise comes atrophy, loss of muscles, and the exercise stimulates the neurons which send the pain signals. Hugs to all you fighters.

  3. Suzanne Stewart at 6:58 am

    Leah Salby I just wanted to touch base with you & your response re: excercise. Part of the bugger problem with Dysautonomia is that our Autonomic nervous system is failing or has failed. There is a total exercise intolerance. I am unable to do anything except walk for a few minutes to 1/2 hour on good days with my cane, walker or wheelchair (which I push too, at times)…. Also remember that one should never suggest that anyone exercise without telling people also to “never exercise without asking your physician first”!
    Anyways we never know what’s wrong with someone by just looking at them. You can definitely see my systemic full body CRPS BUT I KEEP MYSELF COVERED UP -even to a cover on my hand where the late stage CRPS lesions are! Thank you all for the comments

  4. Tim Mason at 9:57 pm

    CRPS is serious and debilitating. If you have this disease/syndrome it is visible. It is not something you have and are able to swim a mile and have the flu at the same time. Stamina alone is not enough to get you through the day. I know someone with this and she just went from using a cane to being wheelchair bound.
    If anyone doubts what the disease or syndrome looks like, google the images of it.

  5. Lisa at 3:49 pm

    Leah-Salby, by saying that you must not have RSD/CRPS. If you did you would know there is NO cure. I for one am glad you don’t suffer from this. It’s a horrible disease in which excercise is NOT a cure. Please leave the medical opinions to the experts. Maybe instead, you can learn and spread awareness for this awful disease. I would love it if excerise cured this because I would NO longer be suffering. That’s just pure ignorance.

  6. Jean Price at 10:02 am

    Like so many conditions, this seems to be one that has many “haystacks” to comb through to find the specific “needle” that will give a firmer diagnosis. It’s so difficult to be told all tests are normal when you know something is really wrong. And yet it’s understandable to see how this can happen with some of these complex conditions, where so many subjective symptoms occur!

    We can usually trust our inner judgment about this, yet it’s hard for others to trust US…unless there is a specific black and while result that is out of range! I’ve found, with so much growth in medical technology, doctors INCREASINGLY tend to treat our “lab reports” instead of us!! So frustrating! And all of our interrelated symptoms can become so confusing, even to us who are living it!! For me, it helps to jot down some key points of what I’m experiencing…and add to it between appointments.

    Often the best we can do is to keep in the game, keep researching about our symptoms, even printing out our findings for the doctor can help us…because some doctors WILL do the tests we suggest just to cover their liability!! And if they won’t, then we have to reevaluate whether we’re in the right place, as hard as it is to seek another doctor!! In making my list of discussion points/questions before an appointment the other day, I realized not only did it help me remember what I wanted to cover, it also helped me clarify and prioritize my current symptoms/issues for myself…so I had not only more chance of being focused on the biggest ones…but I was more able to clearly state them without confusing the doctor with too much extra information. That increases the chance of having a more “productive” appointment outcome.

    With long term, multi-symptomed, and highly individualized ways it idisplays, our complex medical conditions are a struggle to define! So every bit of clarity helps us and the doctor toward an accurate diagnosis and appropriate treatment plan. And since we are our ONLY “patient”…and the doctor has many, it can also help to recap what’s pertinent that has happened with us…before we launch into our chief issues for that appointment. It’s really hard work to seek and receive good medical care, plus we each have our own responsibilities in all of this, too. Yet, over time and with practice, it can get easier as we get more information and more experience communicating it.

  7. Rhea at 2:35 pm

    I have suffered with this since I had an Acoustic Neuroma removed almost 16 years ago. Thus surgery coincided with menopause, so my complaints generally fell on dead ears. I never know from one minute to the next if I’ll be profusely sweating or shivering. The struggle is real.

  8. Howie Find Help at 10:17 am

    It is 100% understandable that just because someone is not “limping” using a wheelchair or wincing with faces of pain that……they do not have a disability or are not in severe pain. As a matter of fact, most chronic pain patients learn to hide the face of pain just for the sake of their intergity. I hold the chronic pain community of those have adhered to treatment as per the law, in the highest regard. We know and better yet, fully, understand the obsatcles of daily life of the chronic pain inflicted. Write your state politicians. Write Congress. Writh the President. About the discrimination against those who have been stable on their medication for years and decades. Write for those yet to come.

  9. JoDawn at 2:57 pm

    Thank you for your story and information! I do think I have something more than “just” (haha) CRPS in my arms. I’ve had a lot of GI issues and terrible fatigue lately. But before that I did have a few months of semi-remission, which was wonderful!!

  10. Cherylmarie at 2:08 pm

    Thank you Suzanne for another great article. I don’t have this but I like to read about different issues.

    Please pain foundation, no offense but its great to read about more invisible illnesses than fibromyalgia. Maybe more guest editors?

  11. Lee N Salm at 10:51 am

    I was fortunate to work as an RN for a dysautonomia specialist, Dr. Charles “Randy” Thompson. He had the disease himself, and seemed happy when I expressed an interest in learning as much as possible about it. We found so many patients who had been referred to him by neurologists or cardiologists because their regular test results often came back normal, leaving diagnosis impossible. Many were told outright that it was all in their minds. A strong shoulder and a good ear often helped as much as medications. Dr. Thompson is basically retired now, despite his strong desire to work, but he taught me how important it was to listen, listen carefully, to your patients. I have tremendous empathy for those suffering from this disease, in all its forms. I wish you, and all others with this, good doctors and improving health.

  12. Tim Mason at 7:20 am

    http://www.medicalnewstoday.com/articles/76785.php
    My wife had the racing heart and chest pain. After several days of a racing heart which caused fatigue I would take her to the ER. She would stand, strapped in a frame. The doctor would stop her heart and restart it. She described it as going down a steep roller coaster.
    She eventually had it fixed via ablation of a node in her heart accessed thru a femoral artery.. For her it was a painless condition and treatment.

  13. Kristine (Krissy) Anderson at 6:44 am

    Suzanne, I’m so glad you wrote this article. Thank you! More information like this needs to be published, especially since many doctors don’t recognize the symptoms, like you said, unless they’re specialists, or the patient becomes ill enough to need emergency services. I will write an article about my experience with this and the diet I put myself on that all but cured symptoms I had for years, and actually took away some of my issues, like GI problems and that horrible, disabling sweating. The links Dysautonomia/POTS has to other diseases, like your CRPS, my CFS and a gazillion other things, are quite extensive and surprising. I believe many of our readers will really appreciate your bringing this to attention!

  14. Julia at 4:51 am

    Thank you soooo much for this explanation of a symptom ruling my life! I was horrified at what my body was doing. I accrued it to a side effect of a pain meication, but I had been on this med quite a lengthy time. This dx is very relevant and fits so many symptoms and helps with another invisible illness that so many deal with…

  15. Leah Salby at 3:06 am

    I have exercised my entire life until I was hit by a retired policeman while bicycling. Exercise cures all. I never had any problems. After I got hit and could not exercise that’s when everything went to hell. My blood pressure, my sleeping patterns, pain, and the list goes on. I suggest people try to do some sort of exercise even meditation.

    Sometimes you don’t realize that not exercising brings on all these issues.

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