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Welcome to DNA. I’ve have CD for about 18 months. I’ve found it really helps to be able to connect with other people who have dystonia. You’re right that it’s a bit scary not knowing how or if it’s going to progress. I don’t think mine has spread but I get the awful fatigue that you speak of. I’ve had Botox twice and will have more soon. I’m trying to manage mine with exercise and stretches given to me by a physio who specialises in neuro conditions. It seems to be helping with pain. I just take each day as it comes.