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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Does Anyone Else Experience Internal/subjective Tremors?

A myMPNteam Member asked a question πŸ’­
Brisbane, AU

Hi all, long time listener, first time caller here.

I was diagnosed with PMF about 6 months ago (CALR mutation, pre-fibrotic) but have strange internal tremor that occurs when I am at rest. It can be on any part of my body, arms, legs, torso, head - or a combination - and is mostly noticeable when I am at rest such as in bed or sitting quietly.

On occasion the tremors have woken me. My partner cannot feel the tremors and there has never been an externally visible manifestation. On other… read more

August 27 (edited)
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A myMPNteam Member

Thanks TTA - interesting that I started having these after having a bout of COVID and they predate my official induction into the MPN club. I will take this information to the neurologist.

August 27
A myMPNteam Member

Update: A bit more research and some more tests has unearthed this. The tremors or internal vibrations are most often felt in as part of a post viral syndrome and more often in people with small fibre neuropathy. While not related directly to MPNs at this stage, there is some confusion of symptoms between MPNs numbness in extremities and SFN. Sooooo - it could potentially be a long COVID exacerbated by SFN or potentially, MPN. The upshot is, treatment would be the same - ignore if not debilitating, propranolol may help or, I am giving Low Dose Naltrexone a shot as that will help with fatigue (hopefully), which will mean I can exercise more which should help with circulation and/or SFN which should reduce the tremors. Systems theory in action :)

October 18
A myMPNteam Member

I have those symptoms too. Initially I thought the symptoms were exclusively due to long covid (the chronic form of covid, post-acute sequelae of covid), but they could also be due to MPNs, as there is some overlap in symptoms between the two.
I saw a neurologist for these internal tremors and got some investigations. I had a flare of autoimmunity to myelin sheath for more than 1 year. It resolved, but the internal tremors are still there. They were there before the autoimmunity. I started having them after my SARS-COV2 infection and every single time I get tired, they are present. Which is almost daily.
I hope your neurologist can give you better explanations on these issues.

August 27
A myMPNteam Member

@A myMPNteam Member, do you think your tremors/vibrations are relate to your MPN or are they post viral?

October 22
A myMPNteam Member

I have had that feeling as well. Glad to know that I am not weird.πŸ€—

October 21

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