After I was diagnosed with Ehlers-Danlos Syndrome( EDS), so many things began to finally make sense! Not only did it explain the constant pain that had no logical cause, it also explained my extreme flexibility and why it sounds like popcorn every time I move!
Since EDS is a connective tissue disease, it affects all areas of the body, including skin, joints, organs and even blood vesses.
I thought I would write a post on some of the many ways this condition affects my body that I’ve realized are definitely not normal since getting diagnosed!
Discolored Feet
I’d always noticed that sometimes my feet would be bright red, purple or blue and other times they would just look normal. My mom had asked my doctor about it and she thought it was Raynauds and said to just keep my feet warm. This didn’t make a whole lot of since to me as my feet would still turn bright red even if it was 100 degrees outside!
It was only after I found out that I had POTS, a common comorbidity of Ehlers-Danlos, that I learned that this is actually due to blood pooling. I don’t entirely understand why it happens, but evidently something about my autonomic nervous system doesn’t signal my blood vessels to send blood back to my heart the way they should. Because of this and gravity, it stays in my feet, leading to the swelling and discoloration.
Joints Popping Out Of Place
I can remember being 9 or 10 and standing up at the end of church only to have my hip pop out and having to desperately grab hold of the pew in front of me to avoid hitting the floor!
Because if this, I have to be very careful of the way I do anything to avoid a joint subluxation. When I laugh or breath deeply I have to stiffen my abdomen to avoid my ribs popping out. I have to be extremely careful when I walk as my right ankle loves to snap and turn inwards when I least expect it! I also have difficulty opening things or pushing buttons because my finger joints have no resistance and just bend.
Even though my joints have always given me issues, I don’t remember ever mentioning it to anyone as I never thought it was abnormal and assumed everyone dealt with it. Since finding out I have EDS I’ve realized that this is NOT normal.
Being Able To Touch My Whole Back
Until I learned I had EDS, it never crossed my mind that most people can’t scratch their own back! I’ve never had any difficulty French braiding my own hair, fastening jewelry or zipping dresses but didn’t realize it’s not really normal to be able to do those things without assistance. EDS lets my shoulder joints dislocate so I can reach my whole back.
I guess it is kind of nice being able to scratch my own back though! I can’t imagine how awful it is to need to scratch and not be able to reach! I always offer to scratch other people’s backs for them now!
Always Being In Pain
As long as I can remember some part of my body has always hurt. If it’s not my head it’s my legs. If it’s not my neck it’s my stomach. Since I’ve dealt with this my whole life, I just assumed other people had this problem too.
Chronic widespread pain is one of the main symptoms of EDS and it’s so difficult to control. I do feel like I’m doing better at managing since getting a diagnosis, however. It makes me feel better knowing I’m not crazy and I don’t feel as guilty for laying under a heating pad instead of getting things done!
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I didn’t want to make this post too long so part two coming soon!