My story starts out with me being a 32-year-old wife and mom to 3.
I had an accident when I was walking down our deck stairs; they were wet, and I slipped and fell. I have scoliosis and a couple of herniated discs in my back, so I put my hands behind my back to try to protect it, and I ended up hurting my collarbone.
I waited a few days for it to get better before getting an X-ray. The X-ray showed no break so my doctor told me I just pulled some muscles. This was my first injury that just wouldn’t heal. Little did I know I partially dislocated my shoulder, but I had no clue I had hypermobile Ehlers-Danlos syndrome (hEDS) at the time.
It took weeks, and this was the beginning of my health journey. It seemed like everything started going haywire after this.
I can remember my joints starting to hurt, I couldn’t regulate my body temperature, my fatigue was horrible. I saw neurologists and rheumatologists, and they all ran tests for autoimmune diseases, Lyme disease, diabetes, and MS. I was told it was probably fibromyalgia but that they weren’t the right kind of doctors to diagnose me with it. At that moment, I honestly thought I had MS. I had run across EDS in my own research, but I ruled it out myself because I didn’t consider myself to be flexible, even though I had all of the other symptoms.
This went on for two years. Continuous tests and different doctors, pain management programs, cortisone injections to help with the pain, MRIs, CT scans, it was never-ending. My husband and I felt hopeless. I was beginning to feel like I had an extremely rare cancer and doctors couldn’t find it. All while my symptoms were getting extremely worse.
I felt like my legs were as heavy as elephant legs at times, sometimes my skin feels like I have bugs biting me, and one of my main symptoms was feeling as though fire was flowing through my veins. We decided to try one more rheumatologist in a different city before heading to the Mayo Clinic. I was extremely anxious, wondering if this doctor would gaslight me, tell me I needed to lose another 60 lbs or tell me that I should consider myself lucky that I’m not a paraplegic and at least I can feel pain.
I walked into Dr. Macquires office and she asked me to sit. My husband and I went through my symptom notebook. She listened intently. When I was done she asked if I had ever heard of Ehlers-Danlos syndrome. I said yes. She also asked if I would consider myself double-jointed, or if I had party tricks. I said no. She asked me to stand. The doctoir went through the Beighton scale with me and I had 9/9 pts. I had no clue I was flexible. She showed me how stretchy my skin was. I was in shock, but so relieved. I was amazed this doctor basically just looked at me and read me like a book.
I walked out of her office with a hEDS diagnosis. It took two years, a ton of medical gaslighting, and then I was left with “what now”. It took another six years before I would find a doctor who would treat my EDS. I am now almost 40, I’m taking lower dose naltrexone, and trying to follow a low-inflammatory diet because I also have mast cell activation syndrome and postural orthostatic tachycardia syndrome. My life is much different with my diagnosis, it is more purposeful. I feel like I’m made to turn this into a positive somehow, so in turn I’m doing so by advocating and bringing awareness to my chronic illnesses.