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Signs My Doctors Missed #EhlersDanlosSyndrome

I won the lottery on genetic diseases, all diagnosed later in life. Sarcoidosis, Raynaud’s Syndrome, Autoimmune Arthritis & now Hypermobile Ehlers Danlos Syndrome.

The symptoms of Ehlers Danlos were there from the start. My Drs never added them up and missed these symptoms:
◼️HYPERFLEXIBLE ▪️Bend thumb to wrist
▪️Crisscross fingers
▪️Hyper flex elbows
▪️Jaw pops out of socket opening mouth
▪️Can put my hands flat on the floor bending over
▪️Knee caps dropped often
▪️Was teased because I ran strange
▪️Hips sublex out of alignment easily
▪️Mild scoliosis
▪️Clothing & fabrics irritated my skin
▪️Scars are sensitive to touch
▪️Can’t wear necklaces or heavy clothing on my neck
▪️Sharp bone pain when young
▪️Smooth, soft, stretchy skin
▪️Horizontal scars across the back
▪️Wounds slow to heal

My maternal grandmother, mom, daughter and son all have these same symptoms. I am the only one diagnosed thus far. What used to be a novelty as a child now causes great pain.
#EhlersDanlosSyndrome #IBS #HyperFlexible #TMJ

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New Here

Hi, I’m new here. I’m a stage 3 breast cancer survivor almost 9 years cancer free, have chronic pain following that and a serious car accident 5 years ago and have sarcoidosis. My pain doctor is weaning me off oxy, but I can’t take NSAIDs so other than topicals and Tylenol I’m out of luck. He just doesn’t seem to get it. So frustrating. Hopefully the I can find some good advice here. Thanks, Shelly # #BreastCancer #ChronicPain #Sarcoidosis #Depression #Anxiety #Arthritis

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I'm new here!

Hi, my name is kitt175. I'm here because I was diagnosed with sarcoidosis in 2010. In 2014 neuro sarcoidosis was added to my diagnosis and early 2023 cardiac sarcoidosis was added too. I volunteer with SarcoidosisUK and enjoy talking with others about our journeys

#MightyTogether #Sarcoidosis

2 reactions 2 comments