I’ve been chronically ill with no official diagnosis since February 6th, 2017. Yes, I remember the date. Because on that day, my life changed forever. This is my story.
Battling never-ending symptoms
It started with chronic nausea, brain fog, skin sensitivity, fatigue and the inability to sit without extreme discomfort in my abdomen.
Every day, the list grew longer – and continues to do so. On bad days, I also suffer from hypersensitive hearing, pain in my muscles, joints, abdomen and lower chest and bloating. In addition, I have trouble focusing my eyes, and I get occasional headaches.
My joints frequently sprain, strain and subluxate (partially dislocate). This makes it hard to walk or even stand without my legs giving out on me. If I use my limbs too much, they become extremely weak, confining me to a wheelchair whenever I go out.
Blood pools in my feet and legs if I stand up, especially if it’s hot or in the shower. When this happens, I have to sit down to get rid of these sensations, because if I don’t, I risk fainting.
Facing a revolving door of doctors and hospitals
When my symptoms began, I consulted a rotation of health care specialists for a diagnosis. I visited multiple primary care doctors, 2 pediatricians, a gastroenterologist, a dermatologist, an autonomic neurologist and a rheumatologist. That’s not to mention all the doctors and neurologists I encountered during various ER visits.
Just before Christmas last year, I checked into the hospital with stroke-like symptoms. I was in emergency care for 4 days. I even rode in an ambulance!
On Christmas Eve, I had an MRI and blood tests – all of which came back clear. Neurologists looked over my symptoms, but even they couldn’t figure out why I was partially paralyzed and couldn’t talk.
My doctors now think I had functional pain, meaning the pain had no organic or physical origin. But that doesn’t mean it was just in my brain; instead, my brain wasn’t sending out the right signals.
After visiting with all these doctors, I’ve noticed the way I speak has changed. I now have a tendency to focus on facts rather than feelings.
My chronic pain has also changed what I want to do when I grow up. Before being chronically ill, I longed to be a police detective. Now I think I want to be a doctor. But being a doctor is stressful and would require a functioning brain! I’m sticking to my music and photography right now.
Attempting holistic treatment
Nutritionists have performed unusual tests to try to diagnose me. For example, one specialist put my hand on a computer mouse to scan my body for damaged or imbalanced areas.
My first nutritionist didn’t help much. The second one also proved to be unhelpful, but she did diagnose me with dysbiosis. This common chronic condition is an imbalance of bacteria in the gut.
My gastroenterologist recommended I try hypnotherapy, an interesting experience to say the least. My mom noticed positive differences in me after the session, but to be honest, I didn’t. In fact, I felt worse because my hypnotherapist made me focus more on my symptoms. It was worth trying though. I’d try anything to feel better.
A “maybe” diagnosis
After over 2 years, I finally have a “maybe” diagnosis.
The first one is a probable diagnosis of Ehlers-Danlos syndrome (EDS), the hypermobile type. Ehlers-Danlos syndromes are a collection of conditions that affect the structure of your collagen. Collagen is in everything – skin, organs, joints – and makes these things stretchy.
To confirm my diagnosis, my doctors have to rule out other conditions. These include lupus, rheumatoid arthritis and other forms of EDS.
Hypermobile EDS is the only type that doesn’t have an identified genetic marker, which is a pain – both literally and figuratively. Ehlers-Danlos can’t be cured. It’s a mutation of collagen, so it can only be managed with medication and physical therapy.
My second possible diagnosis is dysautonomia. This condition occurs when your autonomic nervous system stops functioning properly. The autonomic nervous system controls all your unconscious bodily functions including digestion, breathing and heart rate. I’m being tested for it this June.
The only diagnosis I do have is hypermobility spectrum disorder. My rheumatologist gave me a preliminary diagnosis. He thinks I may have hypermobile Ehlers-Danlos syndrome, but cannot prove it until my tests confirm or rule out EDS.
Daily life while chronically ill
Because of my chronic illness, I’m no longer able to go out. I spend every day in bed because it’s too painful to get out. If I do go out, I use a wheelchair so my legs don’t become paralyzed.
99% of my time is spent streaming TV and movies. It’s been like this for over a year now, which is why I started blogging. I wanted to share my story and spread awareness of chronic illnesses. I also wanted something to do other than watch TV.
The only other activity I’m able to participate in is piano. I’ve been playing since I was 6 and recently rediscovered my love for it. When I first became chronically ill, doctors told me to do what I love. However, when I did, I would feel 10x worse. This included playing the piano. But now, I’m finally able to play again.
Once a month, I’m able to go to the local open mic night. Sometimes I’ll go to the supermarket just to get out of the house, but even that exhausts me.
The only other thing I leave the house for is doctors’ appointments. Even though I have a preliminary diagnosis, doctors are still working on finding me a proper diagnosis. I have to do as little as possible to try and keep my symptoms manageable. But at least I now have a “maybe” diagnosis.
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