My EDS Challenge Day 25- Share your Invisible in Life with Ehlers Danlos

  • May 25, 2021, 6:51 p.m.
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I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.

Day 25- Share your invisible

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This is maythurners syndrome. There is not much education on vascular and nerve issues when it comes to EDS. I am hoping in the years to come that they will study vascular and nerve issues when it comes to EDS & HSD, and they will determine it is yet another co morbidity of being hypermobile.

Its very known that EDS/HSD causes a lot of pain. But most people think of only widespread pain (fibromyalgia) or pain specific to joint dislocations and subluxation. But did you know that a huge source of pelvic and leg pain can be a symptom of vascular insufficiencies/ compressions, vein collatorals, vericose veins and blood flow issues? I discovered I had a 70% left illiac vein compression due to pressure from the right artery. I was stented on my left at that time. My drs were amazed that I had not had blood clots or leg swelling in my left leg. Sometimes you have to try treatments even if youre unsure if its the exact source of the pain. I still have blood flow issues due to dysautonomia and my MTS definitely contributed. But this is my invisible. And sadly not all of the treatments avaliable work. There arent many good options for vascular compressions. Either you live with it, stent it, or surgically fix them. So yes, my Maythurners is “fixed”… but its something I will have to be conscious about for the rest of my life. I will have a piece of metal in my for the rest of my life, and will have to make sure i keep my blood thin and get it ultrasounded every so often. I am still slowly healing. A non EDS’er would have healed from this 6 months out but my PT’s are still feeling scar tissue at the point of entry of my stent, not where my stent is sitting. My nerve pain changed presentation a little bit but overall it hasnt changed.


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