Mayo Clinic & Diagnosed Conditions

It’s been nearly 18 months since my trip to Mayo Clinic. While I’ve done plenty of reflecting and writing during that time period, I’ve more so been focusing on understanding and making peace with my diagnosed conditions, and what it means for me and the rest of my life. It was important for me to fully understand my diagnoses, especially before I would feel comfortable discussing them with the world. While there’s still a lot for me to learn and work on, I’d finally like to share what I was diagnosed with, what I learned on behalf of those conditions and what I’m doing now to better manage my health.

I’d like to start off by saying thank you for all of the positive support and feedback I’ve received since releasing my first blog. At that time, I had been waiting 6+ months to hear from Mayo Clinic in regard to when my first appointment would be. I was really nervous about opening up about my health and how it has affected my life. But instead of worrying, I took a shot at being my most vulnerable self. It was that exact day that I received the phone call from my main Mayo Clinic physician telling me that my first appointment was scheduled for just 10 days away. While I realize this may have been quite the coincidence, there’s not a day that’s gone by that I have regretted my vulnerability. Instead, I now embrace it with open arms, as I feel like it’s made me a more confident and care-free person. There’s nothing wrong with that, right?!

I'd also like to emphasize just how grateful I am to have had the opportunity to work with such prestigious doctors while undergoing such rigorous testing. It was an incredible experience, as I learned more about the human body and brain, and just exactly why mine were and are still functioning the way they are. While the trip was still incredibly efficient, it was also rather exhausting. My schedule was crazy, as every day was scheduled down to the exact minute. The Mayo Clinic campus was huge and due to the number of specialists I saw within different departments, that meant a lot of walking. I was all over the place. Had my Mother not been there to take me to every appointment, I’m not sure I would have made it through until the end. So much that she even had to help me bathe after one of my worst days. If I had to choose one word to describe my visit to Mayo Clinic, it would be INTENSE. I’d be lying if I told you that I received all the answers I had been seeking, or that I’ve got all my conditions under control. However, I still received quite a bit of information (and diagnosis’) to provide me peace of mind, as well as further treatment and an overall idea of what it meant for me and the rest of my life.

Prior to my Mayo Clinic trip, I was diagnosed with Postural Orthostatic Tachycardia Syndrome, more commonly referred to as POTS. While there are a couple different forms of POTS, I was diagnosed with the second and less common form, which is referred to as the “hyperadrenergic” state. Patients who suffer from this form of POTS tend to report a gradual and progressive onset of symptoms as opposed to an abrupt onset. For example, my symptoms began at a very young age and continued to spiral out of control as I grew older. These patients report significant tremor, anxiety and cold sweaty extremities when upright. But the hallmark of this form of POTS is that in addition to Orthostatic Tachycardia, they will often display Orthostatic Hypertension as well. In layman’s terms, my blood pressure and heart rate increase dramatically upon standing or being upright, which can cause and lead to debilitating symptoms that can only be relieved by laying down. This condition is referred to as Orthostatic Intolerance, a rare form of Dysautonomia (dysfunction of the Autonomic Nervous System). While working with the lead cardiologist of Oklahoma Heart Hospital, my doctor was able to successfully rule out quite a bit, enough to establish that my diagnosis was due to an additional underlying cause that would require further testing by a team of specialists. Due to the severity and significant number of symptoms I was experiencing, it was at that time that I was referred to Mayo Clinic by my primary care provider.

I was under the impression that the diagnosis of Hyperadrenergic POTS was the only condition I was suffering from, and that Mayo Clinic would solely be focusing on identifying the underlying cause. Much to my dismay, that was not so much the case, as I was diagnosed with several different chronic illnesses, as well as one very rare neurological / central nervous system disorder that is responsible for a number of my diagnosed conditions and their accompanying symptoms.

Such conditions include:

Central Sensitization Syndrome (CSS) – Neurological / Central Nervous System disorder, defined as a state in which the central nervous system amplifies sensory input across many organ systems; when this occurs, the nervous system goes through a process called “wind-up” and gets regulated in a persistent state of high reactivity

Hyperalgesia – abnormally heightened sensitivity to pain

Orthostatic Intolerance – a rare form of Dysautonomia (dysfunction of the Autonomic Nervous System) that can be characterized by an increase in heart rate and blood pressure caused by standing or being upright that can result in debilitating symptoms that can only be relieved by laying down

Hypertension – high blood pressure

Neuropathy – nerve damage

Fibromyalgia – a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues; researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome – a disease characterized by profound fatigue, sleep abnormalities, pain, and other symptoms that are made worse by exertion

Multiple Chemical Sensitivities – also known as idiopathic environmental intolerances (IEI), a disputed chronic condition characterized by symptoms that the affected person attributes to low-level exposures to commonly used chemicals

Chronic Bladder Irritability – a general term for any persistent condition that provokes the muscles in the bladder to contract involuntarily, resulting in a sudden, urgent, uncontrollable need to urinate

Irritable Bowel Syndrome – a group of symptoms that occur together, including repeated pain in your abdomen and changes in your bowel movements

Acid Reflux Disease – a digestive disease in which stomach acid or bile irritates the lining of the esophagus

Polycystic Ovarian Syndrome – a hormonal disorder causing enlarged ovaries with small cysts on the outer edges

Ehlers-Danlos Syndrome / Joint Hypermobility – a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues; defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications

While the majority of these conditions are common among the chronic illness community, unfortunately Central Sensitization Syndrome is not. Not only can it be difficult to understand, but it can also be quite complex to diagnose and treat. In order for me to move forward with my life, it was important for me to learn and fully wrap my head around the diagnosis, such as the many ways it can affect my brain and body. The most disappointing news of all is that there is no cure for such condition. Central Sensitization Syndrome is caused by dysfunction of the HPA axis in the brain. HPA is an abbreviation for Hypothalamic-Pituitary-Adrenal. It describes a complex set of interactions between two parts of the brain: the hypothalamus and the pituitary gland, and the adrenal or suprarenal glands that are located at the top of each kidney. The HPA axis is a major part of the system that controls your reaction to stress, trauma and injury. It also helps regulate several functions in your body such as blood pressure, temperature, digestion, immune system, mood, energy usage and many more.

With that being said, Central Sensitization Syndrome (CSS) can affect your entire body in numerous different ways. The more I learned about the condition, the more my past flare-ups and symptoms began to make sense. While CSS is a single disorder, it’s the underlying cause to many of my chronic illnesses, such as Multiple Chemical Sensitivities (MCS). I learned that harmful chemicals such as bleach, carbon dioxide and something as minor as hairspray can throw my body into “flu-like episodes” causing migraines, excessive sweating and violent vomiting, in addition to chronic high blood pressure. For example, I was exposed to a small amount of WD-40 in a garage shop. Within minutes, my respiratory system began to flare-up. My throat became itchy and raspy as I started coughing up thick portions of mucus, which I later learned was my lungs’ way of trying to protect themselves. I learned that I suffer from immune deficiency, which is why I can’t walk into a hospital or doctor’s office without walking out sick. I learned that my joints and bones easily pop in-and-out of socket due to joint hypermobility and Ehlers-Danlos Syndrome, a connective tissue disorder. I learned that I suffer from heat intolerance, as well as being photosensitive and allergic to the sun and certain lighting, which makes it difficult to enjoy a day outside. In addition to MCS, I also suffer from Food and Environmental Intolerances. My body reacts negatively to things such as gluten, soy and dairy, which contributes to my gastrointestinal system and its’ associated conditions and problems. I learned that excessive lighting and sound can cause my body to flare-up, which is why I can no longer attend concerts or sporting events. I learned that due to my fluctuating high blood pressure, I’m more likely to suffer from a stroke or heart attack. I learned that living in a large city with numerous toxins, chemicals and allergens in the air was not an option for me. I learned that my body functions best in the mountains, where the air is fresh with little to no triggers. So much that I eventually moved to a small, secluded mountain town to live a more comfortable life. I learned that due to this neurological condition, I’m more likely to develop autoimmune disorders such as Lupus or Rheumatoid Arthritis, as well as being at a higher risk for infections and certain illnesses.

In addition to all of these conditions, I recently injured my back and was diagnosed with a L5 herniated disc. Shortly after, I began experiencing symptoms of sciatica in my left leg. As if widespread chronic pain wasn’t enough, it put my pain levels at an all-time high. Due to the amount of pain I already experience on a daily basis, I was advised that surgery would not be the best option for me. I’m currently awaiting to hear back from Mayo Clinic in regard to returning to address the new injury, as well as establishing a pain management treatment plan.

While my overall trip and experience at Mayo Clinic might have been a bit chaotic, I can’t express the amount of relief I had when I was told that at that time, none of the conditions were life-threatening. And considering the severity of my symptoms, I was incredibly relieved. While there is no cure for Central Sensitization Syndrome and its accompanying conditions, that meant learning how to live with and manage my chronic illnesses. Again, I’d be lying if I told you it’s been easy or that I have everything under control. I, like the majority of most chronically ill patients, live day to day, never knowing how I’ll feel or what condition and symptoms might choose to sneak up on me.

Every day is different. There are so many factors that contribute to the suppression and flare-ups of each chronic illness. There are days where I cannot get out of bed, and there are days where I can spend a couple hours being a normal human without flaring up. I think the most important thing that I’ve learned is to listen to my body. When it’s tired, I need to rest. When I feel good enough to participate in something, I know not to push my body to the edge. It’s all about give and take with your chronic illnesses. While living this kind of life is not ideal and can be rather frustrating, I’m simply grateful to be alive. I think it’s important for every chronically ill patient to find something in their lives that makes life worth living. For me, it was the birth of my nephew that made me realize just how beautiful life can be. I became an Aunt to the most loving and handsome baby boy and in that moment, I knew I wanted to be around to watch him grow and succeed. When I was younger, I thought that by this time in my life, I would be married with kids. I always wanted to have children. I always wanted to be a mom. And sometimes, this can be incredibly difficult subject to ponder on. It’s crazy to think about raising a child when there are days I can barely take care of myself. But as I continue to work towards better managing my health, I have hope that someday I will feel confident and strong enough to become a mother. That hope has reinforced my purpose in life, as I refuse to be defined by my illnesses.

As a chronically ill patient whose conditions went misdiagnosed for nearly 15 years, I feel like it’s important to emphasize that not all illnesses are easily detected and diagnosed. The majority of my conditions are referred to as “invisible illnesses”. I can’t stress the amount of times that my family, friends, classmates and teachers would refer to me as a “hypochondriac” or comment on my health, stating that “I didn’t look sick” and should have been at school. This caused so much pressure and anxiety on me that not only was I withdrawn and homeschooled during middle school, but I also transferred to a different high school for my junior and senior year due to fear of what my classmates and teachers thought of me, as if I were skipping on purpose or lying about my health. No one, and I mean NO ONE, should ever have to justify their health to anyone, including ignorant doctors who refuse to look beneath the surface. Just because you don’t see something doesn’t mean there’s nothing there, and that’s something that makes these conditions so hard to diagnosis and understand. It’s important for people to be aware of these invisible illnesses and to give those who are suffering the respect and dignity they deserve. I went years without knowing what was wrong with me, bouncing from doctor to doctor, leaving every appointment without a single answer. There was a point where I felt nothing but hopelessness. But the more I learned about my health, the more I realized just how grateful I was to wake up every day and simply be alive. It’s important that these patients know that the constant pain and discomfort they’re in is very much real and “not in their heads.” While our lives may be altered from what we originally planned, we are still human beings who deserve the common decency of being treated like any other person, sick or not.

Now that I’ve shared my diagnosed conditions, I plan to post much more frequently as I continue to learn more and manage my health.

In addition, I hope to provide information and support to those patients who are suffering from any of the conditions above, as I would love to provide peace of mind and be the person I needed when I was left hopeless with little to no answers. I never thought that by the age of 27, I would be disabled and suffering from multiple chronic illnesses. But you can't always predict the future, and you certainly can't control it. At some point, all you can do is embrace it. I’m looking forward to sharing more health-related stories from my past, as well as my journey from this point forward. Until next time!