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ninners

555d

Hey everyone! I am 22 y/o, I was diagnosed with fibromyalgia last May, and was recently diagnosed with hypermobile Ehlers-Danlos syndrome and POTS. I’m struggling with the new diagnoses, and I honestly don’t know a lot about them and how they can be treated. If anyone has resources, or suggestions for education and treatment or maybe just some moral support, I would really appreciate it! Thanks :)

Top reply
    • Keikochan

      372d

      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 :)

    • Keikochan

      372d

      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 :)

    • Rando

      373d

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

    • asdfghjklfancat

      375d

      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.

    • MissLucy_101719

      537d

      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.

    • anemone

      537d

      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

    • ginkgowink

      547d

      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!

      • ninners

        537d

        @ginkgowink thank you so much! This is incredibly helpful, thanks for taking the time to write all that! I really appreciate it

    • tallgirl22

      552d

      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

      • ninners

        548d

        @tallgirl22 oh thanks for the suggestion, I’ll definitely check it out 😊

    • stronglysubpar

      552d

      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

      • ninners

        548d

        @stronglysubpar I’d love to hear some of the supplements that have helped you!

    • Jlync80

      552d

      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.

      • ninners

        548d

        @Jlync80 oh I haven’t heard of that before! How is it different from hypermobile EDS?

        • Jlync80

          548d

          @ninners that's what I wanna know. If u type in just hypermobile bladder, EDS ALWAYS comes w it. My Drs haven't even mentioned EDS. But the bladder is hypermobile and moves down into my pelvis but when Dr touches it it'll move back into place. They 1st tried diagnosing me with a severely herniated bladder, nope. I have been told if u have anything hypermobile like that eds is involved. Plus you look at all my symptoms and diagnosis it fits to a "T"!!! I'm still trying 2 get the correct answers myself tho.

    • catdad22

      555d

      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.

      • ninners

        548d

        @catdad22 oh thanks! It’s nice to know I’m not alone. I love that people are willing to make content to share about their experiences :)

      • Chesbro99

        552d

        @catdad22 yes I love Jessica

    • elliebellie01

      555d

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

      • ninners

        555d

        @elliebellie01 thank you so much! I’ll check it out.

        • elliebellie01

          555d

          @ninners also, if you have any questions or need support let me know. There is a lot that I've done to try to manage my fibromyalgia. It seems hopeless at first but I promise you it's just teaching you how to manage yourself a little bit better. I feel like people with fibromyalgia are people that are extremely caring and do more than they should for other people and possibly have anxiety or trauma in the past. And all of that affects how you live your life currently. And it's like a fast track to healing both the mind and the body. And you have to be aware of how much you give other people and how much you give yourself. It's just learning how to love yourself differently. Don't be afraid to take things easy and try things that you feel might help. One medical suggestion I would make is to get in touch with a pain management specialist. I thought that the ra specialist would be the one handling fibromyalgia pain symptoms but they don't typically do that because it's not an autoimmune disease. So basically we need to go to a pain specialist and depending on what their practice style is they'll find you a few ways to help you deal with your pain that are not medicine-based solely.

    • elliebellie01

      555d

      ❤️ 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.

☝ 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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