posted on Oct, 20 2016 @ 11:21 AM
a reply to: PhyllidaDavenport
I was diagnosed with fibromyalgia a few years back, and being a nurse, I also believed it was a waste basket diagnosis. I wrote a thread here
shortly after about having enormous relief after seeing a NUCCA chiropractor and being diagnosed with a cervical subluxation (partial dislocation of
the neck) which he worked to realign. I had no idea at the time that it was only one clue to my actual diagnosis.
It was finally last year that my GI doctor noted that I had Mast Cell Activation Disorder after finding an abundance of mast cells throughout my GI
tract. It causes all kinds of rashes, allergic reactions, and stomach symptoms. It was then that he tested me for hypermobilty since MCAD is
commonly found in conjunction with Ehlers Danlos. I had never even heard of it!
I was sent to a Geneticist who sent me for targeted gene testing after reviewing my history and doing an exam. Tall thin frame, check. Extra
flexible, check. Family history of aneurysms, check. Birth defects, check. I was amazed that doctors had missed it my whole life. I was a
textbook case of EDS. No wonder I complained of "joint pain", I had been suffering from chronic dislocations and subluxations my whole life!
Anyhow, the genetic testing confirmed that yes, it was Ehlers danlos, which in turn saw me referred to the Cardiologist. Turns out I also have POTS
(Postural Orthostatic Tachycardia Syndrome) which also goes hand in hand with EDS. Basically, it causes you to have low blood pressure and a
ridiculously high heart rate when standing up causing fainting. Great! But at least all the pieces of the puzzle are finally in place and I am
finally getting the medical care I really needed all my life. I have some great specialists on my team that have worked really hard to get me to
where I am today.
I write all this because it took nearly 40 years for doctors to discover my true illness. EDS is nothing to write off. It cripples and it kills. It
is considered rare, but researchers are begining to believe that it is just rarely diagnosed. If you have a diagnosis of fibromyalgia, please don't
stop digging. Pain is a sign that something is wrong in your body. Find out what the cause of it is. It may be chronic Lyme, it may be small fiber
neuropathy, it may be EDS, or it may be something totally different. Only you know what you experience and what your everyday symptoms are. I had no
idea that my ability to bend myself into a human pretzel was a major clue to my condition. Sometimes what seems normal to us is not so normal after