Hello, I am new to this forum but you all seem so lovely! I have a question/request:
I was recently diagnosed with fibro and decided to change my thesis topic in the middle of writing it to explore fibromyalgia and touch. I'm a sociology/anthropology undergrad major and I'm curious about how fibro changes people's experience of touch and how that affects what kind of care is best for us. If this sounds interesting to you or you have stories to share I would love to either chat about them here or if you want to do a zoom interview with me that would be really incredible.
A little more about me: My name is Oberon, I use they/them pronouns, I'm 24 years old, and I got my fibro diagnosis about two weeks ago. It was a long time coming but I've only recently been Officially diagnosed. I'm still figuring out how long I've had fibro and what triggered it but I have probably had it 5+ years now. I'm so glad to finally know what has been causing all my pain and the million other random symptoms I've been dealing with. I'm still mourning and contending with dreams of the life I thought I would lead but I know that having fibro doesn't mean my life is over, just that it's going to be different.
My interest in touch and care in a fibro body is sparked in part by learning about the science-y side of things with nerves interpreting signals differently and Allodynia and such but also on a personal level. I always feel bad having to push people away when they try to comfort me by touching me or rubbing my skin when I'm feeling particularly bad. It was such a relief to learn that I wasn't just being difficult or weird; it was a fibro symptom. I still feel bad telling my partner not to touch me when they want to wrap their arms around me to comfort me when I'm crying from the pain. But I'm learning how to work with my fibro instead of against it, I'd love to hear your stories and advice on how touch feels for you and how you navigate touch with other people, especially people who care for you/are providing care.
Regardless of my thesis, I am really glad to have found this forum, you all seem so kind and I'm learning a lot already just from reading everyone's threads. Thank you all for being here and showing me that there are a lot of people who understand and are willing to share stories, ideas, advice and comfort.
I was recently diagnosed with fibro and decided to change my thesis topic in the middle of writing it to explore fibromyalgia and touch. I'm a sociology/anthropology undergrad major and I'm curious about how fibro changes people's experience of touch and how that affects what kind of care is best for us. If this sounds interesting to you or you have stories to share I would love to either chat about them here or if you want to do a zoom interview with me that would be really incredible.
A little more about me: My name is Oberon, I use they/them pronouns, I'm 24 years old, and I got my fibro diagnosis about two weeks ago. It was a long time coming but I've only recently been Officially diagnosed. I'm still figuring out how long I've had fibro and what triggered it but I have probably had it 5+ years now. I'm so glad to finally know what has been causing all my pain and the million other random symptoms I've been dealing with. I'm still mourning and contending with dreams of the life I thought I would lead but I know that having fibro doesn't mean my life is over, just that it's going to be different.
My interest in touch and care in a fibro body is sparked in part by learning about the science-y side of things with nerves interpreting signals differently and Allodynia and such but also on a personal level. I always feel bad having to push people away when they try to comfort me by touching me or rubbing my skin when I'm feeling particularly bad. It was such a relief to learn that I wasn't just being difficult or weird; it was a fibro symptom. I still feel bad telling my partner not to touch me when they want to wrap their arms around me to comfort me when I'm crying from the pain. But I'm learning how to work with my fibro instead of against it, I'd love to hear your stories and advice on how touch feels for you and how you navigate touch with other people, especially people who care for you/are providing care.
Regardless of my thesis, I am really glad to have found this forum, you all seem so kind and I'm learning a lot already just from reading everyone's threads. Thank you all for being here and showing me that there are a lot of people who understand and are willing to share stories, ideas, advice and comfort.
).
Problem is it doesn't allow me to pm you, maybe you have to earn some more points first, to "prove" yourself... 
