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Small fiber neuropathy and muscle tightness
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
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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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1 ReactionAll 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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1 Reaction@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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3 ReactionsHello @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/
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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1 ReactionHello Ed-
I feel for you! I’ve been struggling w small fiber neuropathy w autonomic dysfunction for many years but last 2 have been the worst.
(So far no etiology; not diabetic ; genetic or autoimmune) possibly genetic but no gene mutations were found yet.
I get tightness in my stomach and abdomen and chest. It feels like someone is tightening a rope inside me. It impacts my breathing although pulse ox is normal. I take Metropolol to keep heart rate normal + LDN at night for pain. I try my best to keep distracted and ignore these symptoms.
Bless you!
Eileen
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3 ReactionsWhat is LDN...Low Dose Naxetrone or something and does it help? Curious?
Eileen... I was shocked to find your description of your "tightness in your stomach, abdomen and chest!" I've been searching for information on the internet as well as under the care of various specialists who cannot determine what is causing the symptoms! Have you noticed if your tightness and breathing difficulties are exercise induced?
Do you experience any gait irregularities like a feeling of walking through cement?
I have four autoimmune disorders and many symptoms overlap. Do your docs believe your symptoms are related to the small fiber neuropathy ? I would really appreciate any info you can provide! My lungs have passed all testing as well! Hope to hear from you soon as I have an appointment with my Neurologist in Denver next week and would really like to bring some new info to him. Abdominal Destonia is his diagnosis for me...
Thank you so much...at least I realize I'm not the only one!!!!! Nance
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2 ReactionsI get the same tightness in my core and around the bottom of my rib cage. Feels like I can’t get a deep breath. I also get it in my shoulders at times. I have a sense of vibrating internally as well. I’ve seen so many specialists and ruled out Stroke, MS, Parkinsons, GBS, Transverse Myelitis etc. I’m now scheduled to be tested for SFN and Dysautonomia. It’s horrible at times. Hugs and prayers 🙏🏼
I have NLD-SFN and my muscles in my neck are becoming so very stiff and painful. This has been my latest symptom and the SFN has been progressing more at this same time. Had since childhood but I think maybe my father also had it. It could be hereditary or I was diagnosed with Lyme disease after having it for 25 years, got as a child. My father was exposed to the same property that caused me and all my family that visited to contract it. So not sure which is the cause but could be either according to Lyme doctor. Uhh so sorry for your troubles, I know how you feel! I found one thing that helps a little. It is called cupping therapy, I got my own cups from Amazon and they have all different kinds to choose from. I will pray for you!