Dystonia

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

Hi, my name is becchae. I've been diagnosed with Ehlers-Danlos-linked Dopa-Responsive Dystonia. Basically my muscles contract so hard that they yank my joints right out of their sockets. Thankfully levodopa helps enough while I'm awake so that my joints only sublux a bit, not fully dislocate. I am nearly fully bedbound. 6 months ago I was an active and healthy 23 year old. Now I have no purpose, happiness, or peace. I do blame this on the doctors that wasted months, in some cases years, assuming I was a drug seeker or a psychiatric case instead of a neurological case, which allowed my disorder to generalize all over my body and resulted in permanent brain and nerve damage. I cannot feel entire parts of my body and what I do feel is always pain. I will never trust a doctor or a hospital again, not that I ever really did to begin with. I am, however, now a wealth of resources because nobody knows anything about my condition. So come chat with me about POTS, EDS, Dystonia, hell, Parkinson's. I'd love to feel a tiny bit less useless stuck here with everything that has every brought me joy ripped away from me in a few short months by the ignorant and unempathetic.

Hi, my name is EES041214. I'm here because

#MightyTogether #Depression #Anxiety #Migraine #ADHD #PTSD #EhlersDanlosSyndrome #ChiariMalformation #DegenerativeDiscDisease #Epilepsy #OccipitalNeuralgia #Dystonia #PosturalHypotension #TemporomandibularJointDisorders

Hi, my name is Veronica OHara. I'm here because meet others like me

#MightyTogether #Dystonia

Hi, my name is jonestra. I have Complex Regional pain syndrome, as well as 8 more chronic pain diseases. I hope to find others who have what I have . Fibromyalgia, Ankylosing Spondylitis, Psoriatic Arthritis, Trigeminal Neuralgia, Gastroparisis, Hypothyroidism, Cervical Dystonia, lymphedema, I hope to meet others with my diseases so I can learn more about each of them I have had Complex Regional pain syndrome for 23:years this June. I was healthy until getting this and now I live daily with something flaring.

#MightyTogether

I didn't find any groups for dystonia, but I would like to participate in one. Should I start one? It could include focal dystonia, segmented dystonia, or generalize dystonia.

#BrainInjury #Dystonia #Stroke #DegenerativeDiscDisease Hello. How is everyone doing on this fine feburary morning?

I've got a story that up until recently hasn't gotten any kind of spotlight until now. To start, from June 2022 to October of 2023 I saw physical therapy for an issue involving my left arm posture. The pt diagnosed fnd however the way the posture came about would suggest a different cause alltogether. When I would go to sleep my left arm would involuntarily move under my body & when I would wake up I would find it numb. I sleep flat on my back with my head on a few pillows. This arm sliding under my body would happen constantly. One day last march I woke to my forearm in an L position. No matter what the pt did we couldn't get it back down. I've now got a cushion inbetween the arm & chest however I will still find it in the L position despite this. Is there any reason why this would be happening?

Unrelated to this I got an emg done that showed muscle fatigue in a few muscles on the left arm but besides that it was normal. Could whats going on with my sleep be related to whats going on with my muscles & if so what could it mean?

Hi, my name is shaigupt. I'm here because

#MightyTogether #Dystonia