This time last year, I published my first and only post detailing life with POTS and my recovery process, My Toothbrush, My Trophy. One hour after hitting the publish button: BOOM, I was back in the hospital for more POTS shenanigans. It felt like some kind of blog jinx! October is POTS Awareness month, and last year my body threw a parade in honor of it.
For me, the thing about POTS is that I didn’t know there was an illness I couldn’t fight my way through. With chronic pain, I had forced my body into submission for so many years- all of my adult life in fact. Whether I needed to utilize walking aids, medications, treatments, or therapies, my crippling pain hadn’t kept me from working, going to school, or being there for my husband and family. So, when my autonomic nervous system kicked it (and it really crapped out on me), I was (and still am) shocked that my willpower has not been enough to overcome.
Last October, the ER doctors thought I was having a heart attack because my chest pains were so intense, like electric jolts piercing my heart. I had experienced chest pains, palpitations, and a racing heart (tachycardia) regularly for years with the onset of POTS, however nothing as intense as the pain that began that morning. The ER had never heard of Postural Orthostatic Tachycardia Syndrome or Dysautonomia before (go figure). They didn’t know what my other conditions were either (of course) but I wasn’t as concerned about those at the time. We explained how once upright, my blood pressure drops and heart races, and my autonomic nervous system shuts down. “Oh, almost everyone has that,” the ER doctor said under his breath, chuckling. “Well doctor, everyone doesn’t almost pass out every time they try to sit or stand up,” I whispered through my head pain, angry that he would assume I am confined to lie flat in a bed for years shrouded with earplugs, a headset, and an eye mask- all over a little dizziness upon standing. (Sure, everyone has that). Keep in mind, this is tucked into a tiny dimmed closet-size room in the ER, as my hypersensitivity to light and sound exacerbates my ongoing migraine disorder too much to be around noise. I lucked out with a sweet nurse who knew what RSD was, and she was the only reason I was given special accommodations. They did multiple tests at the hospital, then through the week, I had several rounds of tests at my Cardiologist’s office. You know, the usual fun…
Verdict? They couldn’t find any reason for my heart to experience the additional pain. That was excellent news. POTS is a nervous system condition which effects the way the heart behaves; it isn’t a cardiac condition effecting the way the body behaves. No heart condition- score!
Conclusion: Since they couldn’t find any cause for the pain and onset of increased symptoms, the next 5 months thereafter were out of the doctor’s hands. (Thanks doc!) My fatigue and brain fog were unwavering. Just trying to move my fingers across the keyboard, holding my phone to text, or forming complete thoughts enough to compile a short blog post became so trying…so overwhelming…so frustrating… my short-lived recovery progress had taken a step in the wrong direction. For the first 2 years after the POTS began, I was in stasis mode. Pancake body, syrup brain. I was so ill and no one knew how to help me. After the spinal procedures in 2011 which threw my body into this tangle of illness, I was basically a lump of pain and un-moving frustrated flesh. Having finally made my first bit of progress last year, working so hard to use the restroom on my own and do some of my own personal hygiene from bed, falling backward again was not in my recovery plan! By last Christmas, I became depressed that my body was no longer moving forward and I was still stuck in the same bed going on 4 years after all of the doctors, hospitals, medications and hard work. (If you follow my blog, my posts reflected my disposition.)
Many with autonomic nervous system dysfunction (dysautonomia) carry on normally, dealing with bouts of dizziness or feeling lightheaded periodically. About a quarter of those with POTS are too disabled to work a job. And a small percentage have symptoms which are so severe, they are confined to a bed and may be hospitalized regularly. I fall into the last category, though I haven’t been hospitalized for a whole year- take that chronic illness! (Let’s not count the times I’ve ignored my doctor’s recommendations to go to the ER). A very large number of those with POTS are teen girls. Awareness and treatment options are lacking for the estimated 70 million individuals living with Dysautonomia worldwide. [Dysautonomia International] Conditions like EDS, Fibromyalgia, CRPS/RSD, heart attack, Chronic Fatigue Syndrome/ME/SEID, Chiari Malformation, stroke, Intracranial Hypertension, Traumatic Brain Injury, Spinal Cord Injury and Parkinson’s can cause Dysautonomia and POTS. To find out if you or a loved one have POTS, see a cardiologist for a “tilt table test” and cardiac monitoring.
Symptomatically, POTS is compared to Congestive Heart Failure, COPD, and massive blood loss. I’ve learned that everyone with Dysautonomia experiences it a little differently, but the most prominent symptoms for me have been low blood pressure, fatigue, confusion, trouble concentrating (brain fog), extreme hypersensitivity to sound and light, brain fog, head pain, trouble breathing, syncope/pre-syncope (fainting or almost fainting), vertigo, brain fog, muscle shaking, weakness, trouble digesting and absorbing food (gastroparesis), bladder dysfunction, chest pain, heart palpitations, brain fog, weak pulse laying down, heart racing when upright, orthostatic intolerance, brain fog, and temperature change intolerance…did I remember brain fog?
It took 2 years for me to get properly diagnosed with POTS and Dysautonomia because pain management doctors and primary care doctors don’t know what it is, what the symptoms are, or how to treat it. Just yesterday, my pain management doctor tried to argue that I developed it from “laying around too much” when the immediate onset was actually damage to my spinal cord. For individuals with POTS, the opposite is true. Pushing yourself to do more than your body allows can send your blood pressure plummeting for weeks or months putting you into an almost comatose state, can cause fevers, flu-like symptoms, severe fatigue, wide-spread physical pain, swelling or “blood pooling”, and a long list of intensified symptoms (see all Dysautonomia symptoms here). Last October, for instance, I believe my trip to the ER and subsequent 5 month puddle-of-me was the result of pushing myself to climb a flight of stairs.
Thankfully, this past spring, my body let up enough to allow me back on my journey toward recovery. (Que happy music.) I’m currently doing home physical therapy from bed with a knowledgeable cardiac rehab therapist, I have new goals for my life, and when I am faced with my body’s set-backs, I’ll try not to allow my frustrations to defeat me.
Article dated February, 2015
Last week, the Institute of Medicine re-named Chronic Fatigue Syndrome, also known as ME, now renamed SEID (Systemic Exertion Intolerance Disease). CFS is the name most commonly used in the United States while Myalgic Encephalomyelitis (ME) is the more common name used internationally. As of last week, there is a third name to distinguish this already mysterious condition: SEID.
For many, Chronic Fatigue Syndrome onsets after a virus. Imagine being a perfectly healthy adult, child or teen and after a bout with a feverish flu, you find yourself feeling worse and worse. The appropriate time for the virus lapses, but as much as you fight to get well, your body and mind feel as though they are in shut down mode. No amount of rest or sleep is enough anymore. Just chewing your food makes you feel as though you need a nap. Your thoughts become so blurry and confused- you begin to fear Alzheimer’s or dementia. Migraines, loss of appetite, body pain, hypersensitivity to smells, sounds, lights- these symptoms are the tip of the CFS/ME/SEID iceberg. Imagine feeling like you are moving through quick sand- and there is no end to the breakdown. You are sure it will pass in time, but as time passes, you only become more weak, frail, and may even struggle to stand and walk. Doctors help you by telling you to “get more rest” and send you home. This is what many with Chronic Fatigue Syndrome experience.
The name, Chronic Fatigue Syndrome has been a problem since its origin. Can you imagine suddenly finding yourself confined to a bed, unable to raise your arms from sheer fatigue only to be told by other medical professionals and family members: “Sure, aren’t we all ‘chronically fatigued?” That has been the overwhelming problem with the original name. Doctors without enough education of the disorder have been brushing their patients off, leaving them incapacitated and searching for answers on their own limited energy supply. It’s estimated that as many as 91% of those with CFS/ME have yet to be diagnosed because physicians are still unsure whether or not it is psychological or “all in their [patient’s] heads”.
Over one year ago, the Institute of Medicine began running studies and tests to narrow down specific symptoms and markers in individuals who develop Chronic Fatigue Syndrome/ME. An independent panel of 15 physicians then met to narrow down a few diagnostic criteria and to decide on a new name for CFS/ME. They believe that each word in “Systemic Exertion Intolerance Disease” is more specific and clear as to how the condition affects the body.
Systemic Exertion- indicating the extreme fatigue or malaise all over the entire body.
Intolerance- implies impairment from any sort of activity. ‘Orthostatic Intolerance’ is an example of a common type of intolerance found in those with CFS (cited in the IOM study).
Like other conditions, those with CFS/SEID experience a long list of symptoms which are not all included in the short diagnostic list; keeping the diagnostic criteria short is meant to help doctors understand and treat patients with this disorder better. Here is the list of symptoms the Institute of Medicine’s special panel narrowed down after one year of testing those with Chronic Fatigue Syndrome:
-Profound fatigue lasting at least six months
-Complete exhaustion even after minor physical or cognitive exertion
-Cognitive impairment or “brain fog”
-Worsening of symptoms upon standing or Orthostatic Intolerance
There is a feeling in the CFS/ME community that the re-naming is confusing and sets struggling patients back further. Many in the CFS/ME community are disappointed that the new name is not “Myalgic Encephalomyelitis” to make the name cohesive, finally. Even though Chronic Fatigue Syndrome was the official name in the United States, the international name, “ME” has been largely adopted by CFS sufferers here in the US. However, the IOM argue that there is not significant research showing that patients with SEID have brain inflammation or muscle pain as the core symptoms (the meaning of ME). Some CFS specialists and patients with CFS/ME feel the updated name and new marker symptoms overlook critical issues of the disease like chronic pain, headaches, sensitivities, cardiac disturbances, and gastro-intestinal disruption. This isn’t the first time this disorder has had a make-over, however. Epidemic Neuromyasthenia, Myalgia Nervosa, Epstein Barre, and Royal Free Disease are a few of the names that have been given to those with CFS, now called Systemic Exertion Intolerance Disease. Researchers say in the next 5 years, it may be re-named again, as new research will likely continue to emerge.
Even though there is still uncertainty regarding the new name, many believe there is reason to be positive. The 235-page report released by the IOM is expected to lead to more research for the disease, better funding, and more appropriate treatments for Systemic Exertion Intolerance Disease. Those who at one point may have called up to 2.5 million Americans “complainers” or “lazy” will have more information and education to help the ignorant understand this debilitating condition. Doctors who may have once brushed off their patients’ symptoms because there were unclear guidelines, now have clarity on which criteria specify SEID. And lastly, it is now called a “disease” which shows there is progress in understanding how it affects the brain and body. For such a complex condition that is so debilitating, more understanding and more awareness is paramount!
Read the IOM report for yourself here: http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf