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Fibromyalgia and Central Sensitization Syndrome (CSS)

Fibromyalgia | Last Active: Jun 25 11:29am | Replies (19)
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@JustinMcClanahan

Hi @fightingfibro0505. I'd like to invite @rwinney, @irr4et, and @siackma to this conversation as they shared their experiences with CSS in the discussion:
- Central sensitization - please share your stories
https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories.

I'd also like to invite @dorma, @tresemae, and @katcollins as well to share a bit about their fibromyalgia journey.

@fightingfibro0505, While we wait for others to join the discussion, are you comfortable sharing a bit about how you are currently managing your symptoms or how you are coping?

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Replies to "Hi @fightingfibro0505. I'd like to invite @rwinney, @irr4et, and @siackma to this conversation as they shared..."
tresemae | @tresemae | Aug 5, 2023

Sure, I suppose.

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Rachel, Volunteer Mentor | @rwinney | Aug 5, 2023

Hi there @fightingfibro0505. Thank you @JustinMcClanahan for inviting me.

@fightingfibro0505 - we chatted recently here,
https://connect.mayoclinic.org/comment/867000/
I'm sorry you continue to have challenges of burning and weakness and am hoping your skin punch biopsy test for SFN is negative. Please keep in mind how much CSS can play a role in hypersensitivity, insomnia, digestion, balance, etc...

I have SFN and CSS, and experience, or have experienced much of the same - burning, weakness, tingling, electrick shocks... joint, muscle, nerve pain. A good amount of weakness resulted from overall deconditioning. Hurting so much causes inactivity and by protecting ourselves from further pain it promotes deconditioning. Because Fibro, SFN, CSS, etc...are chronic conditions, it means they have moved past the acute stage and "hurt does not equal harm". That being said, as difficult and as it may be, moderating and balancing activity and exercise are very important.

"March before you feel like it", is a mantra learned at PRC and is used to remind us that we have to move even when we don't feel like it. It sucked not being able to stand at my bathroom sink to brush my teeth because of weakness. burning and shaking! Its scary stuff, especially when you're young and think it should not be happening to you. I understand how you feel and how overwhelming it all can be. I'm in your corner rooting for you.

Which PRC did you graduate from and when? Have you kept up with physical activity since participating in the program? How about reaching back out to your PT for help? What activities do you participate in currently?

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