Hi, my name is UnremarkableMe. I've been diagnosed with EDS & Chiari Malformation, POTS, MCAS it has taken best part of 15 years, finally being diagnosed, only to face a different issue…. get treatment. Navigating this is nothing short of unbelievable but here I am looking for change
#MightyTogether #ehlers-DanlosSyndrome #ChiariMalformation
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Hi, my name is chevy3052. I'm here for
chiari malformation support.
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Hi, my name is chronicallychaotic24. I've been diagnosed with Chiari Malformation Type 1 (already had decompression surgery in February), Hypermobile Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome.
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Exhausted trying to get a diagnosis of hEDS.
But now I'm under pressure because my two sons show symptoms. One is Autistic, one is pending assessment. And me? After seeing all the paperwork I realise I'm an undiagnosed autistic adult at 46.
This is on top of, my sister's Chiari Malformation, my late Father's Ankylosing Spondylitis, my Fibromyalgia (supposedly), Hypermobility etc.
Having a hell of a week. As I got full records from the doctor to check over for insurance, and I was diagnosed with CFS & Hypermobility Syndrome in 2000 - the doctor NEVER divulged it to me.
#AnkylosingSpondylitis #Pacemaker #Fibromyalgia #MastCellActivationDisorder #ChiariMalformation #CeliacDisease
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Hi, my name is MC72. I'm here because
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Everyday tasks
There are so many everyday things people take for granted that people with chronic illnesses or other disabilities cannot do.
For example:
Being able to get out of bed in the morning
Eating without pain
Pain-free days
Standing and walking
Being able to work
Maintaining friendships
Being able to exercise
Being independent
These are the simple things so many people take for granted each and every day, so when you think life is hard, remember it could be so much worse ❤️
#RareDisease #EhlersDanlosSociety #EhlersDanlosSyndrome #ChronicFatigueSyndrome #ComplexRegionalPainSyndrome #PTSD #ChiariMalformation #ChronicFatigue #ChronicIllness #MentalHealth
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Hi, my name is Ljharrison91. I'm here because
#MightyTogether #Fibromyalgia #Bipolar2Disorder #Migraine #EatingDisorder #AnorexiaNervosa #BulimiaNervosa #OrthorexiaNervosa #OCD #Asthma #PTSD #ComplexPTSD #GastroesophagealRefluxDisease #IrritableBowelSyndromeIBS #Gastroparesis #EhlersDanlosSyndrome #MastCellActivationDisorder #PosturalOrthostaticTachycardiaSyndrome #Hypoglycemia #MajorDepressiveDisorder #SocialAnxiety #GeneralizedAnxietyDisorder #AutismSpectrumDisorder #ADHD #Alpha1AntitrypsinDeficiency #ChronicPain #ChronicIllness #RestlessLegsSyndrome #NeuropathyHereditary #TemporomandibularJointDisorders #Bursitis #OccipitalNeuralgia #TrigeminalNeuralgia #ChiariMalformation #Dystonia
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Hi, my name is EES041214. I'm here because
#MightyTogether #Depression #Anxiety #Migraine #ADHD #PTSD #EhlersDanlosSyndrome #ChiariMalformation #DegenerativeDiscDisease #Epilepsy #OccipitalNeuralgia #Dystonia #PosturalHypotension #TemporomandibularJointDisorders
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Hi, my name is SwissMountain83. I'm here because I am interested in how some of you have dealt with your Chiari Malformation diagnosis and how to improve your daily life with the symptoms that you experience. I am hoping to find out too if anyone has had success with any forms of alternative medicine as well. Looking forward to being able to relate to others, as I have felt very alone in my painful days, but am relieved that there has finally been a diagnosis. Thanks for any info!!
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