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I've heard swimming is honestly one of the best things you can do for yourself in those kinds of situations. It removes the gravity - related strain on your body while still allowing you to exercise and move about.

This is the best possible response to that. I wish I could eat a whole pie.

As someone with undiagnosed autoimmune issues, sometimes I feel like I have something more severe. I have gastroparesis and a bunch of digestive issues and tons of food intolerances/sensitivities. I've been able to get my nausea under control for the most part but I still have bad days and end up taking a lot of zofran/dramamine. I get achey easily, sometimes to the point of being confined to bed because I can't move. I know I don't have mitochondrial disease but I think on some level I can relate.

Not sure if this has been asked or not, but what do you have to do on the really bad days? Do you have any medications or therapies you can use that will help with the discomfort?

Holy shit that's amazing.

My sister is currently in the process of trying to be tested for EDS. The scary part is my mom and I both exhibit symptoms as well. I've had digestive issues since birth and was diagnosed with mild gastroparesis. They put me on a medication to move things along and it made me hallucinate and lose sleep. Now it's hit or miss if food is going to be an issue for me, but there are a ton of foods I can't eat now because they cause some sort of reaction one way or another. The most recent is tomato. It makes my throat tense up and my GERD to flare up to the extreme. I have such a terrible relationship with food now. It sucks. Still, I can't imagine having to deal with a feeding tube like that.

On terms of having vascular EDS, have you had any issues with that? What is it capable of causing? I've done research but couldn't find as much information on vascular as classic and hypermobility types. Is muscle weakness and unexplained pain a normal part of EDS?