Dystonia

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.

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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

Hi, my name is coralbadger95470. I'm here because
Ihave dealt with dystonia since 1996. My Doctor has restricted my meds to a low dose. Others meds have quit working. I lost my brother this year so anxiety and depression has been bad. Here recently I have felt my heart not acting right and my blood pressure is high for me. Is there a factor between dystonia and blood pressure? I feel like I walk around in one big spasm every day. The Doctors are so afraid of addition to medication, yet have not experienced what we deal with. When does the quality of life play into this? I use to exercise but find it hard to continue when my muscles are screaming in pain and spasm. I felt better exercising. And desperately want to feel that way again. But I’m at a loss as to how to get there from here. I had done it once but I also had medication to help me through the rough spots. My Neurologist has frequently stated that she is able to distract me and my condition gets better. This makes me feel like she is calling me a liar. Sorry. Just need to unload. Feel lousy this morning. And all I can say is keep moving forward when all I want to do is go to bed#MightyTogether #Anxiety #Depression #Grief #Dystonia

Hi, my name is Eviebean. I'm here because I have EDS and the associated dystonia is becoming worse. Hoping to find some suggestions for coping.

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Hi, my name is Snidley1. I've lived with Migraine for 52 years. Recently I was diagnosed with cervical dystonia which has been a Migraine trigger. My Neurologist has started treating my dystonia with Botox injections, but he says it may take up to four rounds before they are effective. I wonder if others have experience with C.D. also.
#MightyTogether #Migraine