Published: 10/12/2020

My hope is that my diagnosis will help my medical team co-ordinate my care better

I suffered from symptoms that started around the age of 16. I noticed that I couldn’t complete a softball practice without having to stop and catch my breath and take breaks at least two to three times per practice. I also noticed I was extremely tired a lot of the time, more so than most of my friends. 

I got diagnosed with TMJ when I was 16; that’s when the migraines started. I also dealt with joint pain but it wasn’t severe like it is now. When I was 24 I had to be rushed to the hospital for an extreme rise in my temperature, it had jumped up to 105 degrees by the time I arrived. They thought I had spinal meningitis and I had to go through painful testing, all for them to tell me they weren’t sure what had happened. I believe this is when my dysautonomia started.

I started to get dizzy spells and a fast heart rate when I stood up too fast but chalked it up to being pregnant with my second child. I am blessed with three children, doctors said my endometriosis was so bad that I wouldn’t be able to conceive. My pregnancies weren’t easy, lots of nausea and it seemed to make my POTS unbearable at times. My third child came premature but doctors were able to stop labor and I had to be on bed rest for the remaining four months. I had my daughter in October of 2008 and that’s when the adenomyosis started. 

By 2016 I had to have a complete hysterectomy because the weekly periods turned into month-long constant bleeding, sometimes passing huge clots and almost passing out on the toilet. The healing was slow but my skin seemed to fair well with the incision. I also lost two pregnancies because of the weakening of my pelvic floor. I wasn’t far along but it still hurts nonetheless when you miscarry. 

Now I am experiencing incontinence and have to wear pads. I also hurt on a daily basis. I find that if I have an unproductive day I will hurt more than having a day where I’m rather active. My TMJ has gotten so bad that I wake up in excruciating pain from grinding my teeth and find it hard to chew food after that. My dysautonomia is debilitating at times as well. From the feelings of vertigo and almost passing out, to rapid heart rate upon standing that makes me nauseous. I also have severe hot and cold sensitivities along with heightened senses, especially light and sound. The brain fog is so bad I can’t get out complete sentences most of the time without stumbling on my words. All of these symptoms were a complete mystery to doctors. 

I started going to doctors around 17 years old and didn’t get diagnosed until I was 39. I didn’t know what was worse at times: my symptoms from hypermobile Ehlers-Danlos syndrome (hEDS), dysautonomia, or the fact that my doctors thought I was crazy. They told me I needed antidepressants and then went as far as putting me on bipolar meds, which wreaked havoc on my body and made me even sicker. I’m sure my mental health was being affected by constantly being sick. Because of my dysautonomia, taking meds can be tricky because it usually takes a couple of tries to find the right dosage: I can’t take two meds at once because I always have an adverse reaction. 

On my journey to finding my diagnosis, I have a gastrointestinal doctor, cardiologist, neurologist, and pain doctor now. By finding out recently from my geneticist that I do in fact have hEDS and dysautonomia, my doctors can all be on the same page now and maybe come up with a game plan to improve my quality of life. I was literally crying when I found out. Years of no answers and being looked at like your crazy was taking its toll on me mentally. 

I finally feel like I can start to move forward. I want people to know, do not give up, your answers are out there you just have to be persistent.

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