New research on long COVID internal tremors suggests the symptom stems from POTS and small fiber neuropathy, potentially driven by mast cell activation

A study authored by Drs. Ruhoy, Blitshteyn, Saperstein, and others.

From the abstract: “Based on this case, our clinical observations, and existing literature, we suggest IT is a sign of POTS and SFN, likely triggered by hypovolemia, cerebral hypoperfusion, sympathetic nervous system overactivity, neuropathic pain, and mast cell hyperactivation. The paper explores subjective reports, objective data, and treatment options for Long COVID patients with IT.”

Link to paper:

https://www.mdpi.com/2035-8377/17/1/2

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Plenty of studies have pointed this out for years, but most doctors simply don’t care. It’s incredibly disheartening.

I was dealing with MCAS decades before the pandemic hit.

This is exactly what I experience! My doctor told me I shouldn’t be able to feel MCAS flares like that, but I can always tell when it’s happening because of that internal buzzing. I have long covid-related MCAS, POTS, and SFN. I’ve been taking Nervala for the nerve support and it seems to help. This paper is so validating.

Oh wow. I’ve spent nearly a year searching for info on this internal vibrating sensation without luck. My doctor dismissed MCAS, but I developed ME/CFS post-COVID and have had major histamine issues since. This has been happening almost daily for a couple of years now and no one could explain it. This is a game-changer for me! Thank you.

I had a major flare-up six weeks after my 2021 COVID shot. Neurological symptoms led to an MRI showing “old” MS-like lesions. While diagnosed with MS, I also have other inflammatory problems. That flare caused issues that aren’t typical for MS—my daily struggle feels more like an inflammatory battle than MS itself. I’ve since been diagnosed with hypermobility that worsened after the shot, along with many food sensitivities. I now realize that post-vaccine flare was a multi-system inflammatory event (MCAS) resulting in chronic SFN, worse POTS, and food reactions. I can definitely feel the internal vibrations. This really hits home—thanks for posting.

Those internal vibrations are a frequent symptom of PEM in MECFS. It makes sense that mast cell activation is involved, given that PEM is such an inflammatory state.

I have never felt so seen by a headline. I actually started crying because this article lists everything I’m going through. She calls it an electrical current; I’ve always described it as “electric arms.” I have diagnoses for SFN, POTS, and suspected MCAS. I’m stunned. It’s so validating to know it’s not in my head and others experience this too.

I’ve called this “buzzing pain” or a “swarm of bees” for about 6 or 7 years, starting even before I had COVID. This is incredibly validating! I haven’t finished the whole paper, but the intro matches my experience that it worsens during inflammatory flares.

People with anemia frequently report this sensation as well.

I’m having trouble getting the link to load.

My symptoms began after a lengthy MRI, so I suspected MCAS since vibrations affect many with that condition. I’m so glad they stopped because it was my worst symptom—I couldn’t sleep or rest, and doctors didn’t believe me. If it were truly SFN, would it actually go away? My feet have been tingling for nearly five years now.

Thanks for sharing! I’ve found relief using magnesium, specific B vitamins, and calcium. Zinc seemed to help too, likely by keeping viral loads down. Clearing out mold exposure from damp buildings also reduced the symptoms. I notice it more right before a bad attack, so I use Hydroxyzine as a preventative. I suspect the tremors come from adrenaline spikes reacting to histamine, which triggers muscle contractions.

It’s frustrating that it took so many people getting sick for this condition to finally receive serious scientific attention.