EDS Blog Challenge Day 4 My Advice for the Newly Diagnosed



First of all Happy Star Wars Day, May the 4th be with you. J

There’s a whole list of things I want them to know, it’s nearly never-ending, but I’m only going to list a few. There’s so many things that often times people are prepared for, I certainly know I wasn’t really prepared regardless of seeing all these doctors.

1.     Don’t give up until you get answers to all your symptoms no matter how tempting it is to just give up. I don’t know how many times I thought about giving up, probably hundreds. You’re experiencing your symptoms for a reason don’t forget that it’s a long process of trial and error.
2.     Do your research; don’t go into a appointment unprepared. Don’t let the doctors blindside you with things as they often times do. You are your best advocate, only you know how you feel. Having a vague idea of what might happen to you at an appointment is better than having no idea at all.
3.     Challenge your doctors, if you’ve seen a doctor for years and years like I have eventually they’re going to know you more personally. When you have that comfortable relationship is a good thing. They’re going to know that you do your research and are taking an active role in your treatment plan and care. They don’t have all the answers sometimes you need to make suggestions and encourage them to think outside the box.
4.     Just because you have the ability to bend your body in strange ways don’t do it for fun. Or at least keep it to a minimum or you’re going to destroy your joints and be in even more pain.

5.     Figure out what helps any joint/general pain you may have. Be it a bath or lotion or whatever tickles your fancy. And then you’re going to want to stock up on it, like large bags of Epsom salts. Prepare for highs and lows in your pain because it’s going to happen eventually. And figure out what triggers your pain so you can learn to avoid it at all costs

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