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Health seems to be deteriorating: CSS? Fibro related?

Chronic Pain | Last Active: Jun 15, 2023 | Replies (34)
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@fightingfibro0505

Oh I didn’t know there was a Facebook group what’s it called?

Thank you so much these are some encouraging words. I also have a lot of structural issues going on. Lumbar curvature, c3 issues, t6-t7 issues, SI joint mild degenerative arthritis, reversal cervical lordosis, so forth… so I know it’s a whole mix of everything.

It’s more the paralysis that I’m concerned about that’s new and my skin being mottled. I definitely need to rule those things out for additional underlying problems. Because I know it’s not fibro or CSS.

Thank you again so much this was super helpful! I’d love to join that Facebook group! PRC hasn’t given me much resourceful answers and my past doctors told me they were for temporary care but I’ll get all the answers down the road. It’s that “gut instinct too” like when I was misdiagnosed with Ankylosing spondylitis and went to Mayo the first time and go my fibro and css diagnoses correctly diagnosed

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Replies to "Oh I didn’t know there was a Facebook group what’s it called? Thank you so much..."
Rachel, Volunteer Mentor | @rwinney | May 29, 2023

Hey there! I'm glad you found encouragement in my words... that's what I'm here for!! It is super important to hear when you're going through a confusing time. Now that I think about it - the private FB group I'm referring to may just be for Florida Pain Rehab graduates. We received info about the FB group called, "Living The C', with our packet on our final day. Which PRC did you graduate from? Rochester, I think you mentioned. I recommend contacting them and asking.

I think the best answers your PRC team can give you, or would give you, is to stick to the principles of the program no matter what is thrown your way. It is a solid foundation to keep progressing with. I've got two kids in their 20's and although they have seen me go through "my stuff" they have not gone through these degrees of chronic pain or conditions themselves. If they did, I would offer empathy, with a little tough love, and help educate them. Who is in your corner as a support system?

Do you mind explaining more about your paralysis? How are you affected by it? Has any doctor told you it is permanent?

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Rachel, Volunteer Mentor | @rwinney | Jun 1, 2023

Hello. Checking in on you...
Following your gut instinct is right. You know your body best, after all. I felt the same way about some of my diagnoses, I knew there was more to it. When will your next appointment be to get the ball rolling?

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