Looking for a support group for Dysautonomia, the trifecta, and comorbidities? I'm struggling, you're struggling, we don't have to do it alone. Welcome! See the pinned post for community guidelines.https://bsky.app/profile/arden-ewen-tsg.bsky.socialhttps://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mxjmxsjhfc2ySorry, I was MIA there for a while. I had more surgery for venous pooling. Recovery has been challenging. I'm also navigating some personal life changes. This is a very difficult time. How are you holding up?10 Oct 2026 13:49 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mxjmxsjhfc2yhttps://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mtfhg72a322hHello friends. Just checking in. How can this group help support you today?19 Aug 2026 00:18 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mtfhg72a322hhttps://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mpzwrlg5n22yHey Beny, Salty, Mast Cell friends! What do you use for light sensitivity? I found FL-41 glasses clips. They come in different shades. I found I gain about 30 extra minutes in places where the lights bother me, like the grocery store.07 Jul 2026 06:05 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mpzwrlg5n22yhttps://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mng6a2gpns2yLast moth was EDS awareness month. Yet we need more awareness for people with the complex overlap of multiple dysautonomias. #Dysautonomia #MCAS #POTS #EDS #triad #trifecta03 Jun 2026 22:35 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mng6a2gpns2yhttps://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mng5tpssv22ySome humor you will relate to. I actually laughed out loud. 🤣03 Jun 2026 22:28 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mng5tpssv22yhttps://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mnbqr3yf6c2bHave any of you listened to the Bendy Bodies podcast? I've listened to: Dr. Andrew Callen on Cranial Cervical Instability/CFS leak. Dr. Eric Signman on eye problems in EDS. There are hundreds of episodes to listen to, with experts talking about us! www.bendybodiespodcast.com #bendybodiespodcast https://www.bendybodiespodcast.com/02 Jun 2026 04:23 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mnbqr3yf6c2bhttps://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mnbqbkjju22bI've been MIA with several follow-up appointments and a big MCAS flare. I'm being scheduled for 3 more surgeries due to venous reflux following iliac vein stenting. Dr.'s suspect cranial cervical instability and HAE type III angioedema. More tests, more specialists. How is your journey advancing?02 Jun 2026 04:15 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mnbqbkjju22bhttps://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mltn4f5cok22Do you have chronic migraine in addition to the Trifecta? Have you heard about Chari Malformation? Do you have Chari Malformation? Does anything help with your pain? #hEDS #POTS #MCAS #migraine14 May 2026 20:16 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mltn4f5cok22https://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mlrigjkonc2fChecking in: how can this group assist you today? Do you need some positivity, an ear of someone listening and understanding? Some inspiration? Got any questions? You're not alone, while all of our journeys and symptoms may be different, the struggle persists. We're with you. 💜💜💜13 May 2026 23:47 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mlrigjkonc2fhttps://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mko3qhqep22c@tapestrymoth.bsky.social I thought of you when I saw this. https://www.annfammed.org/content/early/2026/04/24/afm.250266-029 Apr 2026 21:56 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mko3qhqep22chttps://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mknytil7bc2hHello Friends! I'm just checking in. How are you feeling today? Any changes or updates? In the depths of this struggle, I hope you find peace and comfort today, even if it's very small. Hold onto the little positive things. They matter a lot! 💜 #POTS #MCAS #hEDS #HSD #dysautonomia29 Apr 2026 21:04 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mknytil7bc2hhttps://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mknycdg2h22hI made it through my first IVIG infusion. Thankfully I didn't have any serious adverse reactions so it's safe to continue. I was completely exhausted for the last two days. I slept nearly the whole time. Doc says it'll be 4-6 months following treatment before I start feeling any positive impact.29 Apr 2026 20:55 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mknycdg2h22hhttps://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mkgjvk4mfc2wI'm starting to feel nervous. Tomorrow is my first IVIG infusion. I'm hoping it doesn't cause any adverse reactions. Are any of you going through IVIG infusions? How do you manage sessions and aftercare?26 Apr 2026 21:48 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mkgjvk4mfc2whttps://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mkbjlny2qk2eHave you been diagnosed with POTS and MCAS but are still in limbo with an hEDS/HSD diagnosis? The EDS society is making a major update to the diagnostic criteria this December! https://www.ehlers-danlos.com/new-global-diagnostic-criteria-2026/ #dysautonomia #POTS #MCAS #hEDS #HSD24 Apr 2026 22:00 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mkbjlny2qk2ehttps://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mkbjcwdhbk2eHi friends, I need some help understanding: How are you navigating the cost of your health journey? Do you have insurance, pay out of pocket, government assistance, or something else?24 Apr 2026 21:55 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mkbjcwdhbk2ehttps://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mkbiehor6s27Hi Friends. After a year of getting bounced between specialists, I finally met with a Neuroimmunologist. It took another year to get IVIG infusions approved by insurance. Due to surgery, my deductible is met and I can finally get the infusions done. My first appointment is on Monday. Wish me luck!24 Apr 2026 21:38 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mkbiehor6s27https://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mk6jyuhrpc2mDysautonomia International is having their annual conference July 9th-12th. Firends, they have zoom virtual attendance option!!! Click on registration and scroll to the bottom. www.dysconf.org #dysautonomia #POTS #MCAS #hEDS https://www.dysconf.org/23 Apr 2026 17:29 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mk6jyuhrpc2mhttps://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mk6iotlnhc2mHi friends, I'm just checking in. What struggles are you facing today? For me, my BP is low, eyes blurred, migraine, Raynaud's, SFN burning, hands & feet are swollen, fatigued. I also may May-Thurners. Doc put a sent in and that still hurts. This is a pretty typical morning for me. How about you?23 Apr 2026 17:05 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mk6iotlnhc2mhttps://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mk4oz6gw7s25Check out these organizations for more on the POTS, MCAS, hEDS: Dysautonomia International www.dysautonomiainternational.org/index.php The Ehlers-Danlos Society www.ehlers-danlos.com Standing up to POTS www.standinguptopots.org Mast Cell Disease Society tmsforacure.org #trifecta #POTS #hEDS #MCAS22 Apr 2026 23:53 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mk4oz6gw7s25https://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mk4dq5knus25This beautiful dog is my service dog, Bergen. He's a Yakutia Laika. Paired with me by Above the Clouds Siberian Service Dogs based out of Colorado Springs. He can alert with POTS and hypoglycemia. Do you have a service dog? How does your dog assist you? #servicedog #POTS #hEDS #MCAS22 Apr 2026 20:31 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mk4dq5knus25https://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mk4c7vvfxk25If you have found your way to this support group, welcome!!! I couldn't find a support group to join so now I'm starting it. I need some help: Would you share some of your story? What are you struggling with? How can the group help support you? #POTS #hEDS #MCAS #dysautonomia #supportgroup22 Apr 2026 20:04 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mk4c7vvfxk25https://bsky.app/profile/arden-ewen-tsg.bsky.social/post/3mk47nxhjvf2uThis is a peer support space for those with Dysautonomia Trifecta: POTS, MCAS, hEDS, and related conditions (SFN, autoimmune overlap, venous compression, etc.) 💛 Purpose: Share experiences, ask questions, and support each other.22 Apr 2026 19:19 +0000at://did:plc:mrfaimdvpefxtphe56j4kf7w/app.bsky.feed.post/3mk47nxhjvf2u