Chronic Illness: A Quest For a Diagnosis

So, my fellow spoonies (hey there!) all know what I mean by the title.

You see doctor’s, nurses, physical therapists, paramedics, etc. for years! You see several types of specialists, often more than one of the same type. Over the past 10 or so years I’ve seen cardiologists, neurologists, psychologists, psychiatrists, primary care physicians, sports medicine doctors, ER doctors, orthopedists, physical therapist, and I’m sure others. I’ve heard so many different labels/diagnoses, and even suggestions I’m faking, all of my issues and illness. I’m sick of it! No one has taken me seriously so far.

A bit of background…

The issues began being noticed when I was a toddler. I was “W sitting”.

                                                                        Source: http://nutritiousmovement.com/w-sitting/

My mom’s friend who was a physical therapist noticed this and tried to correct me. As I got older, the same person noticed that I over pronate, or stand on the insides of my feet.

Pronation.jpg (800×442)Source:http://www.trifuel.com/files/Pronation.jpg

She mentioned that this was probably a bone deformity that should have been corrected with braces as a young child but it was too late now.

As an adult, I learned that I not only over pronate, I also have flat feet but only when I stand. (Big shout out to my current physical therapist for being the best I’ve ever seen!) I was sent to her after a sprained ankle (probably at least the 10th time I’ve hurt THAT JOINT) that hadn’t healed in months! I’m going on 6 months with the same ankle.

She told me to go buy some shoes that would help with this issue. I ended up with Brooks Addiction 12. I can’t rave about these enough but that’s for another post.

I also have been dislocating and subluxing joints my entire life! My first diagnosed one was when I was 16. I can not remember a time when something in my body didn’t hurt though. I had been told it was “growing pains”, arthritis, I was just clumsy/had bad luck/needed to be more careful, etc.

A few weeks ago I finally saw a new primary care doc. I explained all my symptoms (chronic joint pain and dislocations, hypermobility (being “loose” or “double” jointed), easy bruising, lightheadedness upon standing, etc.) along with the family history of heart problems, and told her my rockstar physical therapist had suggested Ehlers-Danlos Syndrome and that I had done A LOT of research on it and that it seemed to fit.

A week later, I log onto my online chart and see the words,

“Connective Tissue Disorder” 

I was so happy to hear that someone believed me and that all of my symptoms weren’t in my head.

She referred me to a rheumatologist to have more testing done as far as seeing which connective tissue disorder it is. That appointment is a few months away but I’m slowly getting worse and so, so angry that no one believed me for this long and so happy to finally have someone have believed what I’m dealing with.

 

If you’ve read this far I want to say welcome and thank you for reading!!

I also want to apologize for any incoherent thoughts or poor spelling. Brain fog is kicking my a** today.

As always Love & Spoons,

J.

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