Newly Diagnosed with Fibromyalgia, EDS, and POTS

Hi, I have fibro and POTS. Have you been to see a specialist for your POTS? The specialist that I saw also tested for EDS so the doctor might be able to help you with both. This website is super helpful and has a map to find a specialist near you if you need one: http://www.dysautonomiainternational.org My POTS is mild enough that I’m not on medication. My doctor recommended starting with increasing water and salt intake (I can look up specifics and share with you if you’d like) and trying compression stockings. Then moving on to meds if that doesn’t help after a few months. I haven’t tried compression stockings yet, but upping my salt has really really helped my symptoms be manageable. There’s also some exercise guidelines to help but I haven’t personally been able to try because of pretty severe exercise intolerance. I drink electrolyte drinks every day that are high in sodium (my favorite right now is LMNT but I’m about to try out Buoy which is flavorless and can be added to any drink!) Also, transitioning to an upright position slowly is very helpful. In the mornings I sit up in bed and drink water before I stand up. My symptoms also flare when I’m just standing in one place, but for some reason walking around is better, so I make sure I’m either walking or sitting. If you faint, sometimes people recommend wearing a medical bracelet that lists your condition in case you faint in public. It can also tell people what to do or not do (eg, call or don’t call emergency services). I’ve heard service dogs can also be amazing for POTS, especially if you faint. Heat is a big trigger for POTS, so I really up the salt and water on hot days. Showers can be really difficult for many so a lot of people use shower chairs so they can be sitting and try not to use too hot of water. Hope some of these are helpful!

There’s a book I just got called The Dysautonomia Project, you can get it on Amazon. I’m 23 with all of these conditions as well so I’m really sorry to hear you were just diagnosed but hopefully understanding your illnesses better will bring some peace

Hey! I have fibro and hypermobility syndrome. I’m very new to hyper mobility syndrome but I’ve been diagnosed with fibro for a couple years. Certain meds and supplements have helped me

I was just diagnosed w bladder hypermobile EDS. I don't know a thing either. Wondering if I have it in general if my bladder is that way.

I was diagnosed with fibromyalgia several months ago, and I’m trying to find out whether I have EDS or POTS. Know that you aren’t alone. Also, Aaron Ansuini is a cool queer influenced with POTS and EDS, and Jessica Kellgren-Fozard is an excellent British lesbian YouTuber with POTS, hEDS and a few other conditions I’m blanking on.

The book is called fibromyalgia and chronic myofascial pain a survival manual by Devin Starlanyl & Mary Ellen Copeland.