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The Unrepentant Host retweeted
Gastroenterology dietician believes i may have #POTS Agrees re #HEDS Shocking to have someone agree with me that KNOWS about Heds Thanks f*ck #NEISvoid
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Mary Quigley retweeted
We have been asked to share this fundraiser for Ella, a young person in the UK with #SevereME & #POTS. Ella has been in hospital for months with intestinal failure. Her family needs support for care now & to prepare their home. #pwME #Dysautonomia gofundme.com/f/29uex-help-el…
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People with #POTS Do you all experience fainting? I think I have many symptoms, but I’ve never fainted in my entire life. Just feel lightheaded and fuzzy. 🤔 #MECFS #Fibromyalgia #NEISvoid
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🏆😁 #POTS
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My vaccine reaction has been an emotional struggle. I went a long time without talking about it cause I was afraid to speak up. Now I'm left with less support. If the world wasn't so divided, maybe I wouldn't have kept so much to myself #pots #VaxSideEffects #vaccineinjuries
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#NEISvoid I’m a chronically i’ll person diagnosed with fibromyalgia and a traumatic brain injury. PT has speculated #POTS and doc just found a heart murmur. Looking for any info about whether these are related/commonly occur together???
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Un día eres una joven saludable, de repente, llegan a tu vida las enfermedades crónicas y te ves cada lunes rellenando pastilleros...🙄 #EsclerosisMúltiple #EncefalomielitisMiálgica #Fibromialgia #Disautonomía #POTS #SOP Virgencita (si no puedo mejorar) que me quede como estoy...
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The Black Box: Awaken retweeted
1/🧵 ⭐️ Postural orthostatic tachycardia syndrome (#POTS) and ANXIETY ⭐️ (a thread in response to recent experiences patients have had on here and some questions from others.) -👉POTS is NOT a psychological disorder….👈
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So I have agreed to be interviewed by fellow longhauler @ReemaCandidly for Facebook Live 🤦🏻‍♂️ Wish me luck. She is my sister. What would you like her to ask me? Comment below 🙏🏾 #LongCovid #TreatLongCovid #ResearchLongCovid #vaccineinjuries #MCAS #HSD #EDS #POTS #MECFS #Lyme
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Next Prime Minister of Canada🌻🤔🇨🇦🌈 retweeted
Day 790 of #longcovid. Stillllll going to the hospital every week for infusions (including at 7am on long weekends), still dealing with #pots and #mecfs, still have crazy inflammation and vascular issues,etc... I’ve said it 5000x but you don’t want this and it’s not over! #fblc
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the void shouts back into you retweeted
Knowing my workload as the hotter months approach, to combat #pots and #eds I think I need a wheelchair but I have basically no insurance and my shoulders dislocate so much I'm concerned a manual will only make that worse. Suggestions? #NEISvoid
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One of my patients, a cardiologist with #POTS, said that they used to dismiss young women with tachycardia as anxiety until they themselves developed POTS and realized that it had nothing to do with anxiety and everything to do with disabling physical symptoms.
If you have lived experience of a condition or a life event u may get labelled ‘biased’ or ‘subjective’ about it. I’d argue u can also be biased because of not experiencing it. So yes be transparent about your experiences but also about not knowing what it’s like to have them.
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