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Earlier today I felt like I could tackle the world. I worked on dishes, earrings, keychains, laundry and made rice crispy treats. I was feeling pretty decent and accomplished. This afternoon I felt like a ton of bricks landed on me. My left hand and fingers became more achy than normal. Standing up made me feel like passing out. No food or drink sounded good. Most days I feel okay even with moderate depression and anxiety along with the chronic pain and dysautonamia symptoms. There are other days where I question it all. Why are blood draws so difficult? Why is my skin so sensitive to something as simple as bandaids? Why does heat affect me so much? Why can't all of my specialists talk to each other and come up with a collective plan?
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@lulu4 I'm hoping that my nurse care manager can help
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G-d, as someone with EDS, bandaids are the WORST
@Atusin right? I can have a bandaid or tegaderm on for less than an hour and it leaves marks for days
Your symptoms sound like you may have "Vertigo" I have that to a lesser extent. Even I stand up a little fast, I get light headed, I've even fallen down because of it. You should get that checked out
@Renall I have vertigo too. Sadly, I've been dealing with ear and hearing issues for most of my life
my sister has dysutonmia and POTS, and she describes feeling this same exact way. it’s just the life of chronic illnesses, sadly.
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@lavap I'm newly diagnosed and just learning how to handle it all
I had the same problem with my son and his doctor's never coming together. I found that traveling to a bigger city and getting better medical care was the only option for doctors who work more in teams and communicate better. It does make a difference with collaborative care. It did save my son's life.💕
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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision
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