Welcome, I’m so glad you’re here! If you are someone who has been experiencing chronic symptoms with no answers, I can definitely empathize with you. My journey is pretty long and complicated, but I will provide a condensed version here. I hope my story can help spread awareness of these lesser known conditions and can help someone else get a diagnosis more quickly than I did.
My symptoms started around middle school, I was always fatigued and experienced joint pain, but all of my tests were normal, so I went on with life and just chalked it up to being “a person who just needs more naps”. Fast forward to post-college, my symptoms were much worse and I had developed terrible GI symptoms and several IgE food allergies. I eventually ended up at Mayo Clinic and was told that I may have a connective tissue disorder called Ehlers Danlos Syndrome. It took me another year to get in with a geneticist to be evaluated for this. I was diagnosed in 2020 with Hypermobile Ehlers Danlos Syndrome, which is a connective tissue disorder that impacts my collagen. Symptoms of this can be hypermobility, joint pain, muscle pain, fatigue, dislocations or subluxations, easy bruising and much more because we have collagen all over our entire body. It provides support and structure to our tissues and organs and because of this it can cause multi-systemic issues. People with hEDS typically end up at various doctors without the dots being connected. The genetic basis of hEDS still remains unknown, so it is a clinical diagnosis using the Beighton Scale. Typically, it is diagnosed by a geneticist and the main treatment is lifelong physical therapy.
Along with hEDS, I was also diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). POTS is a condition that can cause a number of symptoms including dizziness, fainting, brain fog, heart palpitations, fatigue, shakiness, headaches, bloating and more. POTS is autonomic nervous system dysfunction and our autonomic nervous system controls all of the functions that our body is supposed to do automatically (think heart rate, breathing, digestion, temperature, etc). People with POTS have trouble regulating these systems. They also tend to pool a larger amount of blood in vessels below their heart when they stand and may have elevated levels of certain hormones such as epinephrine and norepinephrine. The way this is diagnosed is with a tilt table test. In order for the test to be positive, your heart rate must increase at least 30 bpm within the first 10 minutes of standing. Many people diagnosed with POTS are told to increase their sodium intake or wear compression socks.
MCAS is a condition that causes mast cells to release an inappropriate level of chemicals called mast cell mediators into the body. This can cause symptoms such as anaphylaxis, hives, swelling, low blood pressure, difficulty breathing, GI issues and more. The criteria for MCAS is symptoms in two or more organ symptoms, mast cell mediator testing and responding to treatment for MCAS, which is typically H1 blockers, H2 blockers and a mast cell stabilizer. Many of us with these conditions are able to pinpoint a “trigger” that caused our symptoms to occur suddenly or worsen such as a trauma, virus, etc. MCAS and POTS also play off of each other and can trigger each other. This is just a brief overview of these conditions as they are extremely complex and there is still a lack of research and knowledge around them.
In 2020, I was also diagnosed with Lyme disease. This is a topic for another post, but many of these conditions overlap and intertwine with each other. I now have issues with my hormones, cortisol, gut and much more. It can be important to rule out Lyme if you have any of the symptoms. I have gotten to a point in my journey where it is not so much the labels or the diagnoses that are important to me, but how I am going to overcome them. I am currently doing so many things to support my body and I will detail this further in another post! Check out my Instagram page highlights as well for more insight into my health journey.
When I was initially diagnosed with wheat and dairy allergies, I started an Instagram account to look for gluten-free and dairy-free recipes. At the time, I thought it was the end of the world because I couldn’t eat bread or cheese. Little did I know, that was only the beginning of my journey, as I was subsequently diagnosed with several more food allergies. Through my Instagram account, I connected with so many people around the world who also have food allergies or chronic illnesses. After a few years, I had built this incredible and supportive community and had learned so much.
I think it’s really hard for most people to understand walking into a doctor’s office and having them either tell you they have never heard of your condition or tell you that there is no treatment. I am not one to take no for an answer and I have been lucky enough to formulate an incredible medical team who is supportive and willing to help me work to feel my best. I have made a ton of progress over the last year and while it is a long journey, it has been so worth it. I know a lot of people want to know that “one thing” that has helped, but with chronic illness, it will never be one thing. It’s a lifestyle change and it’s supporting every system of your body in so many ways, from your gut to your mitochondria to your nervous system to your brain. I have found the most success using an integrative approach and I will share more about that and my lifestyle in subsequent blog posts!
There are also silver linings that have come from this experience. I have connected with so many amazing people. I have learned so much about the human body and I am looking into furthering my education (stay tuned). I have read so many life changing health books (click here for my top 10 book recommendations). My biggest takeaway from this experience is that we know our bodies best and if you feel like something is wrong, it probably is.
Here are some resources I recommend if you’re looking to learn more about EDS, POTS or MCAS: