Writing thesis on Fibro and Touch, anyone down to be interviewed?

Oberon

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Mar 2, 2022
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22
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.
 

JayCS

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Hi Oberon, and welcome!
Good to hear that the diagnosis is helping you put things into place, and that you already realize that mourning and re-planning is an important part of our process. How long we've had it and what triggered are more fun conjectures, more important of course is to check which of our symptoms are maybe not part of fibro, how to alleviate them, find out & prevent their triggers, and like you say work with fibro, not against it.
Personally I may not be the best specimen, as I may have less allodynia than others - mine is more discomfort than pain. Wind does cause extreme deep-muscular fibro-pain, but I'm not sure it's its 'touch'. Wearing textiles causes many problems, but not pain, I think that's more my MCAS-oversensitivities than fibro. My previous strong need for partner touch has greatly changed to problems due to fibro, but it's more discomfort than pain, sometimes extreme tho. As it's - I think - only (sometimes) there if I have pain of 3 of 7 or above, I - as ever - don't ascribe it to central sensitisation. But come to think about it - maybe I could analyze that a bit more, might come in useful anyway...
I'd have no problems with a video interview, I'd prefer jitsi to zoom tho, for privacy reasons, including not taping - ehm: recording. An audio'd be OK as long as it stays in your possession and is never shared anywhere, online or database...

Edit: As I'm trying one last fling of acupuncture, this time real Chinese, I shouldn't cold shower after those days, and realize normal showering now hurts me more than cold (esp. since my MCAS-jab-sfx, it's a symptom of MCAS) (as well as sleeping worse if I don't cold shower... :rolleyes: ).
 
Last edited:

Oberon

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Mar 2, 2022
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22
Hi Jay!
Thank you so much for welcoming me and for your reply and thoughts! I would love to chat with you more, even if you don't quantify your experience of allodynia as painful. That's a really great question about how to categorize wind and if it counts as touch... I'll have to re-examine my definitions! I think I have a similar experience where I don't have allodynia all the time or if I do, it's more extreme and more of a problem when my overall pain is worse or when I'm really overwhelmed.
Is there a way to direct message on this forum? I'd love to set up an interview. I'm more than happy to use jitsi and of course respect whatever level of recording or not recording you're comfortable with. An audio recording (never shared, deleted after I finish the paper) would be helpful for me but I can also just take good notes!
Thank you again for sharing your thoughts and being interested!
Oberon
 

Rhanithomas

New member
Joined
Mar 8, 2022
Messages
1
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.
Yes I would be interested in being interviewed.
 

JayCS

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DX FIBRO
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Is there a way to direct message on this forum?
Clicking on the envelope top right shows "start a conversation". I'd think it's fairly private, altho on some platforms, maybe here too, the mods can read private postings, which shouldn't be a problem. As I said I'm up for an interview if you're interested, jitsi and audio .... :cool: Problem is it doesn't allow me to pm you, maybe you have to earn some more points first, to "prove" yourself... 🧐
 

Badger

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Apr 2, 2021
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218
Hello, I would also be interested in participating if it's any help to you. I've had awful pains on top of my forearms for example and sometimes get very sharp intermittent pains skin over the skin of hands and feet. Atb
 

Oberon

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Mar 2, 2022
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Thank you Jay, that makes sense if it's feature you have to earn by being on a little longer and proving you're not going to start any trouble haha! I'm happy to put my email here and if anyone who is interested could send me an email so I can set up a time with you that would be amazing! Thank you all for the help! My email is [email protected]
 

Oberon

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Mar 2, 2022
Messages
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Thank you so much! If you want to send me an email and we can set up a time and a method for communication that would be wonderful! Or if it's easier to share your thoughts here in this thread that is awesome too!
 

KimsCorner

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Mar 18, 2022
Messages
15
I would also be interested; I was diagnosed with Fibromyalgia about 12 years ago. Like someone else commented about certain clothes they wear, being touched or air on them can trigger the Fibromyalgia. But I also have Neuropathy & had the exact same experiences. Although I was diagnosed with Neuropathy first & then diagnosed with Fibromyalgia 2 years after.
 

Oberon

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Mar 2, 2022
Messages
22
I would also be interested; I was diagnosed with Fibromyalgia about 12 years ago. Like someone else commented about certain clothes they wear, being touched or air on them can trigger the Fibromyalgia. But I also have Neuropathy & had the exact same experiences. Although I was diagnosed with Neuropathy first & then diagnosed with Fibromyalgia 2 years after.
Hello! Thank you so much for your interest! It's so interesting how fibro and other conditions work together, and how interconnected symptoms can be. Makes it hard to know what is what! With the two different things impacting your nerves and nervous system I'm curious about how you viewed these touch triggers before you got either diagnosis, and if/how that changed after you got the Neuropathy diagnosis and then if it changed again with the fibromyalgia diagnosis. Do you interpret those touches and your reactions to them differently now? I'd love to talk more with you, either here or in an interview. If you want to send me an email and set up an interview my info is up a couple comments back in the tread, I'd love to chat!
 

JayCS

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Oberon and I did the interview a few days ago - very pleasant experience and the questions were food for further thought!
I've added a "Fibro & Touch" category to my fibro blog, noting what happens and what I can influence...
 

KimsCorner

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Mar 18, 2022
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I would love to be interviewed and to email you! But I'm very new here and wouldn't know where to look for your email address!! Thank you.
 

JayCS

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DX FIBRO
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I would love to be interviewed and to email you! But I'm very new here and wouldn't know where to look for your email address!! Thank you.
post #7 on this thread :)
 
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