The Second Diagnosis

My last blog was months ago, about being diagnosed with hyperadrenergic POTS in June. Since then my life has been full of doctors and mainly centered around my health.

I was briefly on bed rest, due to an incredibly high resting heart rate and hypertension. But in September I was luckily able to start physical therapy and work towards a more active lifestyle. Although this was a major accomplishment, it uncovered some problems.

After my first PT appointment I was in pain, but attributed it to just being sore. However, it continued and the pain got significantly worse. My hips, my knees, my shoulders, my back, it seemed like every part of me was hurting. My physical therapist started to notice that as I was doing simple exercises, some as easy as straightening my leg, my joints would sublux (which means my joints would begin to, or partially dislocate)

So last Monday, I got in to see a geneticist. I had never thought of myself as double jointed, or flexible. Apparently I was wrong. Hypermobility is measured by the Beighton Scoring System, which is scored on a scale of 1-9. I scored a 9, and in my doctors words, a high 9 at that.

My diagnosis is still a little confusing to me, but I have hypermobility spectrum disorder, which is a connective tissue disease. Here is a link to a website that has some info: https://www.ehlers-danlos.com/what-is-hsd/

2019 has now brought me two chronic illnesses! But luckily, with a diagnosis, I am able to start working towards finding the right treatment. One thing I will never take for granted again is having a medical provider who is well versed in the conditions that I have, or at least willing to learn. Through all of this, the hardest part has been finding someone to treat me.

Right now, I still haven’t found a doctor locally that has an expertise in dysautonomia, so I’m struggling with treatment, and simply understanding my illnesses to be honest. But I hope that with my continuing research I will find the answers I need.

Thanks for reading, sorry it’s not the happiest of posts-

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4 Comments on “The Second Diagnosis

  1. Emma, I’m so sorry. I remember when Adrienne was going through her stuff, I.e. cyclic vomiting syndrome and mitochondrial deficit, hyper flexible too causing chronic foot pain from collapsing arches etc… I know how difficult it can be!!
    Let’s us know if you want to talk . Xo 😘

    Like

  2. I am sorry to hear about your diagnosis. I myself have multiple chronic conditions too. Many people who have POTS have underlying connective tissue disorders including EDS. If you scored 9 on the Beighton Scale thought that is the highest you can get! So you must eb able to do the splits with ease.

    Like

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