Newly Diagnosed with Fibromyalgia, EDS, and POTS

Hi there! I'm 21 and was also diagnosed with Hypovolemic POTS and Fibromyalgia. Doctors think I have EDS but because I live on a small island there are no Doctors willing to diagnose me. I'm always here to support you if you need anything. Sounds like we have a lot in common so I'd be happy to chat :)

Out of curiosity how did you get diagnosed with POTS, I’ve been arguing with my doctor about it.

I started using a cane to walk to class a few years ago, and it has since gotten worse. You don't have to use any mobile aid all the time. You can use them part-time, and the type can vary day to day. I have a shower chair that I use on bad days.

The book "the dysautonomia project" is really good. Although not a treatment, I find a blood pressure monitor and pulse oximeter helpful in tracking symptoms.

got dx'd with fibro and hypermobity at the same time back in december 2020, finally got told i have hEDS this june (but it's considered a provisional diagnosis until i can see a genetic counselor, since it was my neurologist that dx'd it). i think it's possible i have a milder case of classic or classic-like, because i do have at least some skin hyperextensibility, among other things, and both of my parents have some symptoms of joint hypermobility to boot... but we can't know until i can get testing done (and apparently that could take years because of waiting lists). none of my doctors can even refer me to someone so i'm just having to google names and hope i can find one... and insurance is a whole other deal

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.

❤️ just wanted to send you love and support. I know a little bit about pots but I am also diagnosed with fibromyalgia. I do have a really good book that you can read if you would like to.