Small fiber neuropathy and muscle tightness

Posted by imsaed @imsaed, Feb 28 10:17am

Hello everyone,

Anyone have a SFN issue whereby they get muscle tightness which does not subside? Specific area of trapezius and neck muscles, but impact entire body including legs which can impact balance and gait at times. Done many test at Mayo with a conclusion of post viral syndrome and neurology department was almost completely useless except to give you a benzo script. I’ve done all MRIs, CT and Pet scans, no suspected issues with MS or ALS type issues. All started over time when I fell at home and broke my wrist which did not require surgery.

Sound familiar to anyone and any advice?

God bless,
Ed

Hi. Hope someone can answer your questions or shed some light on….. I have yet to get a diagnosis but from Internet would not be surprised I have SFN. Peripheral Neuropathy since 2016 and over last late summer/fall… felt like my legs were like sticks and as you describe, affected my "gait" sort of like my legs didn't belong to me!
Will have to look up post viral syndrome… but the internal shaking/tremors now get quite bad to the point of pain and yes around my neck and back of head like someone hit me with a shovel… the symptoms vary depending on if I spent the day in bed; or had to go out etc. oh your wrist didn't require surgery but I hope they at least strapped it so it would heal ok? Unfortunate tests did not help…. I am in a northern Ontario town and we don't even have a neurologist … am waiting for a teleconference call in a few weeks… but I am not holding out much hope of either a diagnosis or cure. J.

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@lacy2

Hi. Hope someone can answer your questions or shed some light on….. I have yet to get a diagnosis but from Internet would not be surprised I have SFN. Peripheral Neuropathy since 2016 and over last late summer/fall… felt like my legs were like sticks and as you describe, affected my "gait" sort of like my legs didn't belong to me!
Will have to look up post viral syndrome… but the internal shaking/tremors now get quite bad to the point of pain and yes around my neck and back of head like someone hit me with a shovel… the symptoms vary depending on if I spent the day in bed; or had to go out etc. oh your wrist didn't require surgery but I hope they at least strapped it so it would heal ok? Unfortunate tests did not help…. I am in a northern Ontario town and we don't even have a neurologist … am waiting for a teleconference call in a few weeks… but I am not holding out much hope of either a diagnosis or cure. J.

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All we can do is pray, unfortunately I don’t believe cold weather helps either. Mine started when my head wanted to pull down towards my chest. Never had any issues in my life before, so it rocked my normal world for sure. Thank you for sharing and hope you get relief, improvement then recovery !!!

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@imsaed

All we can do is pray, unfortunately I don’t believe cold weather helps either. Mine started when my head wanted to pull down towards my chest. Never had any issues in my life before, so it rocked my normal world for sure. Thank you for sharing and hope you get relief, improvement then recovery !!!

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@imsaid. My heart goes out to you. Please keep us posted and add any new info or ideas you may have. You are in my prayers.

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Hello @imsaed, I would like to add my welcome to Connect along with @lacy2 and others. From what I've read, post viral syndrome refers to a sense of tiredness and weakness that lingers after a person has fought off a viral infection. It can arise even after common infections, such as the flu. Is this what you were diagnosed with at Mayo?

– What to know about post-viral syndrome: https://www.medicalnewstoday.com/articles/326619

There is another discussion which you may want to read and learn what others have shared on post viral neuropathy: https://connect.mayoclinic.org/discussion/post-viral-neuropathy/

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@johnbishop

Hello @imsaed, I would like to add my welcome to Connect along with @lacy2 and others. From what I've read, post viral syndrome refers to a sense of tiredness and weakness that lingers after a person has fought off a viral infection. It can arise even after common infections, such as the flu. Is this what you were diagnosed with at Mayo?

– What to know about post-viral syndrome: https://www.medicalnewstoday.com/articles/326619

There is another discussion which you may want to read and learn what others have shared on post viral neuropathy: https://connect.mayoclinic.org/discussion/post-viral-neuropathy/

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Thank you John, I was never overly fatigued but did have some pneumonia in the bottom of my left lung which resolved pretty quickly once identified and treated with a “Z-pack”. Mayo diagnosed with PVS as a catch all if they can’t figure it out. The neurologist were all less than useful, disappointing for Mayo. Just gave me benzodiazepines and sent me home. Post viral neuropathy makes a lot more sense. Thank you for sharing and will keep reading threads here. God bless you all.

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