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Small fiber neuropathy and muscle tightness

Posted by imsaed @imsaed, Feb 28, 2021

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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rhonda1965 | @rhonda1965 | Oct 8 11:40pm
In reply to @robindancer5678 "I just happened upon this thread and it has been so helpful. I feel like a..." + (show)
Profile picture for robindancer5678 @robindancer5678

I just happened upon this thread and it has been so helpful. I feel like a medical mystery sometimes. I too have had pins and needles in my left leg, now moving to my right leg. Often I have muscle tightness in all extremities when I try to get out of bed in the morning - when I start to walk it feels like I'm the Tin Man from the Wizard of Oz. Thankfully once I'm up and moving it gets better. At times I get chest tightness and difficulty breathing which is scary but I check my pulse ox, which is always normal which helps me not to panic. I've had a very thorough workup from eight or nine specialists including a Johns Hopkins Neurologist. At one point the diagnosis was SFPN, non-length dependent, but the skin biopsies were negative. We have also been puzzled because my symptoms vary markedly. In June my balance was bad and I needed a hiking pole to walk, had vertigo and chest palpitations, by November those symptoms were gone, then in mid-December I started again with the muscle tightness/spasms and burning at night that has made me feel like I'm being electrocuted. My neurologist thinks that it could be a post-viral reaction to COVID (in 2021) or a reaction to the Moderna COVID vaccine. I had Pfizer vaccines three or four times without difficulty, then I had two Moderna vaccines and this whole nightmare started. Or his other theory (also the opinion of the allergist) is that COVID kicked my immune system into overdrive which exacerbated my reaction to the Moderna vaccine. My immune system is so wacky now that I can't even tolerate vitamin supplements (riboflavin, magnesium, multi-vitamin, calcium send me out of my mind with itching/burning at night) and I can't tolerate sulfites and preservatives in food. So - long story short - it's helpful to read other people's experiences so I know I'm not crazy. Thanks everyone for posting!

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@robindancer5678 are you sure supplements are causing itching? SFN causes itching. I have that too. Balance issues are a large fiber neuropathy which I’m having as well. They can cause autonomic issues with lungs, heart, sweating, GI, bowels. Anything you can’t control. I hope this helps.

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julbpat | @julbpat | Oct 9 7:23am
In reply to @rhonda1965 "@julbpat EMG nerve conduction study doesn’t show SFN only LFN. I had that done it was..." + (show)
Profile picture for rhonda1965 @rhonda1965

@julbpat EMG nerve conduction study doesn’t show SFN only LFN. I had that done it was normal but skin biopsy confirmed I have it.

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@rhonda1965 I guess I was trying to be concise. Yes, the normal EMG with neuropathy symptoms is another clue leading to SFN diagnosis.

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