1. < Chronic Pain

Health seems to be deteriorating: CSS? Fibro related?

Posted by fightingfibro0505 @fightingfibro0505, May 21, 2023

Initially I was diagnosed with fibromyalgia, chronic fatigue, and central sensitization syndrome in January 2021. I did Mayo Clinic’s Pain Rehabilitation Program and gained a lot of great muscle when I kept up with the program at home.

July 2022 I endured a harsh fall, a month following the fall I lost consciousness only for about 20 seconds and my health spiraled downhill from there. I have experienced double my pain level before the fall from head to toe, severe migraines, eye pain (mainly right eye), right facial pain, jaw pain, right body weakness, what looks like livedo reticulitis on my legs and feet, right carpal tunnel syndrome (feels like I’m starting to get it in my left hand now), hypertension, moderate-severe temperature intolerance, dizziness, and extreme severe fatigue.

My local doctors keep pushing everything off as fibromyalgia. When I initially went to Mayo Clinic I was told I had severe functional decline and I believe I am in that state again. My local doctors don’t seem too concerned, I’m in my mid 20’s and I have large eye bags from fatigue so I know there is more going on.

Has anyone experienced similar symptoms?

Interested in more discussions like this? Go to the Chronic Pain Support Group.

fightingfibro0505 | @fightingfibro0505 | Jun 6, 2023
In reply to @rwinney "I was diagnosed with Small Fiber Neuropathy due to a B12 deficiency. Perhaps my nerves have..." + (show)
@rwinney

I was diagnosed with Small Fiber Neuropathy due to a B12 deficiency. Perhaps my nerves have regenerated with supplementation, though hard to tell because CSS mirrors neuropathy symptoms. Have you found the cause of your neuropathy?

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No I actually am not diagnosed with neuropathy however I do believe I have it because I have much more pain in my arm and right side of my body than left side of my body and I think it’s due to a harsh fall injury

REPLY
fightingfibro0505 | @fightingfibro0505 | Jun 6, 2023
In reply to @rwinney "I was diagnosed with Small Fiber Neuropathy due to a B12 deficiency. Perhaps my nerves have..." + (show)
@rwinney

I was diagnosed with Small Fiber Neuropathy due to a B12 deficiency. Perhaps my nerves have regenerated with supplementation, though hard to tell because CSS mirrors neuropathy symptoms. Have you found the cause of your neuropathy?

Jump to this post

Currently it seems like I have less than half the hand function I used to half a little over 6 months ago mixed with right side facial pain, jaw pain. My pain starts in neck and my rotator cuff mainly then shoots down to my finger tips

REPLY
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 7, 2023
In reply to @fightingfibro0505 "Currently it seems like I have less than half the hand function I used to half..." + (show)
@fightingfibro0505

Currently it seems like I have less than half the hand function I used to half a little over 6 months ago mixed with right side facial pain, jaw pain. My pain starts in neck and my rotator cuff mainly then shoots down to my finger tips

Jump to this post

There are skin biopsies that detect small fiber neuropathy, also, EMG and nerve conduction studies to diagnose further, or rule out neuropathy possibilities. At the end of the day, it's about management (just like CSS), but having an idea of the cause is helpful.

Are you working with a neurologist to rule out neuropathy?

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 15, 2023
In reply to @fightingfibro0505 "Currently it seems like I have less than half the hand function I used to half..." + (show)
@fightingfibro0505

Currently it seems like I have less than half the hand function I used to half a little over 6 months ago mixed with right side facial pain, jaw pain. My pain starts in neck and my rotator cuff mainly then shoots down to my finger tips

Jump to this post

Hey there, just checking in...do you have any new developments or care plan? How is therapy going?

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