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Post viral syndrome peripheral nerve hyperexcitability
Hi everyone,
I’m a 36-year-old navigating recovery from what’s been described as post-viral small fiber involvement and motor nerve hyperexcitability.
How It Began:
It started after a viral illness in August 2024, during a time when my whole family had upper respiratory symptoms.
I developed fever, diffuse headache, and left-sided temple pain, which later localized and became persistent.
By January 2025, I began to experience:
Burning sensations
Pins and needles
Odd wet or sunburn-like skin feelings
Muscle fasciculations (twitches) across my body
Migratory muscle pain and intermittent joint discomfort
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Workup So Far:
MRI of brain and cervical spine: Normal
Autoimmune workup: Negative
Skin biopsy: Normal epidermal nerve fiber density
Nerve conduction studies & EMG (lower extremities): Normal
CBC, CMP, CRP, ESR, CK, aldolase, B12: All normal
No evidence of large fiber neuropathy or motor neuron disease
No clinical weakness or atrophy
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Current Working Diagnosis:
Post-viral small fiber sensitization
Motor nerve hyperexcitability (likely benign fasciculation syndrome or similar)
Significant health anxiety, especially due to my medical background and profession
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What’s Helping Me:
Gabapentin (600 mg at night)
Supplements:
Magnesium glycinate
CoQ10
Alpha-lipoic acid (ALA)
Omega-3
Curcumin
B-complex
Vitamin D3 + K2
Ashwagandha, glycine, apigenin (for calming and sleep)
Exercise: Strength remains intact and working out reinforces my confidence
Mind-body tools:
Headspace and Curable app
Weekly visits with a psychologist
Gratitude journaling
Somatic calming techniques (breathing, grounding, mantra work)
New mantra I use daily:
> “One in a million. I am strong. This will pass.”
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Biggest Lessons:
Even with scary symptoms like widespread twitching or burning, the body can be in a state of hyperawareness, not disease.
I’ve learned the importance of regulating fear and stress to support nervous system healing.
Benign doesn’t mean painless—but it does mean hopeful.
Working with a neurologist, psychologist, and staying grounded in scientific reasoning has helped me reclaim my peace.
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Happy to connect with anyone navigating something similar. You're not alone—and your body is capable of calming, rewiring, and healing.
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Hello @josh701, Welcome to Connect. Thank you for sharing your experience and what helps you manage the symptoms. The one thing that I noticed and appreciate is that positivity you have and the importance you place in regulating fear and stress. Most of us start our search with Dr. Google and as layman with no medical background it can be a scary process. You are right about not being alone and that is one of the great values of Connect where members can learn what others with similar conditions have found helps. If you haven't used the search function on Connect to find others with similar symptoms, I would highly recommend it. I'm fortunate that I only have the numbness with my neuropathy so I'm hoping others that can relate to your symptoms will join your discussion and share their experiences.
If you are looking for good resources to learn more about neuropathy, here are a few of my favorites:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/
-- Matthew B. Jensen YouTube Channel and his Introduction to Neurology: https://www.youtube.com/@MatthewBJensen.
Hi John, thanks for the reply. I think at times I almost wish I didn't have a medical background as I am an NP. I know just enough to really get freaked out. The muscle twitches really were a struggle to deal with as it is only natural to think of very scary motor neuron diseases. But mine are wide spread and jump around on a daily basis. Given my age no weakness or no family history i figured the likely hood to be 1 in a million. I use that saying when times are tough.
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2 ReactionsOmg, I can really relate to what you describe. I had similar symptoms, plus a few more categories. I won’t list in this post. I also took measures similar to you in managing symptoms and working towards better health. And, I am much better.
I am curious as to whether your B levels were ok.
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1 ReactionOnly checked my b12 it was supratheraputic at like 1900. Had been supplementing for 3 months prior to lab draw. How are you doing now? What all work up did you have? What have you found helpful?
I was low on B12 and diagnosed by neurologist (#2) with B12 deficiency based on my first test months earlier, since he said after starting supplement, the value is then skewed too high. Neurologist (#1) had ordered MRI, EMG & some labs for tingling, numbness, bitter taste, fasciculations, internal vibrations, etc. Normal results, referred to rheumatologist for autoimmune. Abnormal ANA. After B12 had burning skin, paresthesia, continued bitter taste, smell/taste disorder and long covid by ENT. Since had lingering congestion, phlegm, runny nose. Unable to take Gabapentin due to blurred vision. Occasional Klonopin short term. Anxiety and health anxiety. Was convinced I had ALS, PD,….
I found a great therapist and considered meds, but never did take Lexapro. Talk therapy worked great for me. Focused on letting go of things I can’t control.
Saw nutritionist and got on healthy eating plan.
Joined gym and began daily workouts. Lost almost 100 pounds. Got a new insulin pump and brought my a1c down substantially.
I still have some symptoms, which could be permanent, but I’m stronger, braver and happier than I’ve been in a long time….maybe ever! I think it’s because I am so grateful for the good health I do have. There are people around here who are very sick…..it’s had a big impact on me. Life is grande and I’m very fortunate.
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5 ReactionsThanks for sharing your incredible journey. Any books anything you recommend for overcoming health anxiety?
I wish I had one. I’m planing to write one….one day. Lol. Have you found any?
Years ago, when I used to have panic attacks, I read everything I could about how to manage them, including a biography by Donny Osmond. It did help. The more I learned how our body can cause us to feel certain sensations to the point we become convinced we are going to die, the better I was at staying calm and avoiding it taking over. I haven’t had one in many years.
My therapist gave me a lot of guidance on how to have an internal dialogue with myself with my health anxiety. We talked about following up with my doctors, getting tests, and following doctor’s orders. Then, learning to accept that I have done my best and let it go. I’m not always successful, but am doing much better.
Good luck with your continued journey!
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2 Reactions@josh701
Did you have extensive neuropathy blood work and did anything show up abnormally high or low? Any toxicities/deficiencies?
Did you have bloodwork to detect viruses you were exposed to to narrow down which viruses are causing neurological symptoms?
You may want to consider adding Acetyl l carnitine supplement to your regimen.
Do you drink, smoke, vape? Any toxins can aggravate nerves. Diabetes/prediabetes can also affect nerves.
@josh701
Did you ever have Covid? Did you ever have Chickenpox or Shingles? Did you ever have exposure to the Epstein Barr (mononucleosis) or Herpes virus? It would be good to see if you could get testing for viruses since some viruses can lay dormant in your nervous system and get aggravated and reactivated by stress, illness or hormone changes. Some viruses are in your body for life and it then is important to find ways to keep them dormant and not reactivated since this causes neurological symptoms.
Hello and thanks for the response. Both of my kids are in daycare so they are a constant germ factory. Covid rates in my town were peaking at the time I got sick. Also I saw lots of people in the hospital at that time with covid. I didn't have any home tests so I cannot say for certain but that's my best guess.
I have had chicken pocks but not shingles and I'm not sure about EBV.
CBC (Complete Blood Count): Normal
CMP (Comprehensive Metabolic Panel): Normal, except slightly low potassium (3.4)
CRP & ESR: Low (indicating no active inflammation)
CK & Aldolase: Normal (no evidence of muscle breakdown)
Vitamin B12: Elevated from supplementation (1900)
Autoimmune Panel:
ANA, SSA, SSB, CCP, RF, and Anti-thyroid peroxidase: All negative
Serum & Urine Protein Electrophoresis: Normal, except slightly low alpha-2 band (0.5)—not clinically significant
Skin Biopsy: Normal epidermal nerve fiber density (no small fiber loss)