Sensations of fizzing or buzzing, or paraesthesia in limbs

Paul Garner stated that his privileged position meant that he was able to talk about his more bizarre post-covid symptoms without being accused of being mad, whereas those without his background could not (radio interview here).

I learned very early on in this illness not to mention these sorts of symptoms to doctors after being mocked openly and having them trivialised on a number of occasions.

We may have discovered a cause for ME by now had doctors actually listened to patients.

 

I've rarely seen this described by ME patients, probably because of knowing it would be used as a weapon, but seeing it so common in COVID patients may change that, although I have yet to see anything medically official noticing this. Hell, medicine hasn't even acknowledged exertion intolerance yet and it's probably the most common symptom.

Maybe sometime between 2122 and the heat death of the universe. Or if medicine can finally accept that patient engagement is crucial to make progress and stops dismissing useful information. Either or.

 

Eh, I actually saw one comment on one of his early articles saying just that, "has the doctor heard of Munchhausen's?". Definitely right that it takes immense privilege to report those without fear of significant repercussions.

 

I didn't think the buzzing fizzing vibrating feeling in legs was an ME thing - glad to see others with ME get it (well not really, but you know what I mean.)

 

The oddest sensation I've had is a grinding, low-frequency vibration that goes down the centre of my spine. I've only ever seen it mentioned by one other ME patient, years ago.

It only happens when I'm extremely unwell with an active flare, and on about half the occasions I've experienced it, I was also having fully-conscious sensory hallucinations (e.g., a strong wind blowing over me, or I was floating above the bed).

Weird, but not at all unpleasant. Needless to say, I've never mentioned it to a doctor!

 

For me it's not, or not exclusively.

One of my earliest memories is of it, I must have been 2-3 years old.

It made an impression

 

I get this with my ME too. It feels like it messes with medication making meds intolerable causing greater side effects.

In my severe years I told one of my GPs that my body felt like a fizzy drink inside, fizzed up inside the cells. I am more wary now how I explain symptoms because describing symptoms in this way can cause doctors to see the problem as psychological instead of physical.

 

I get fizzing in muscles when I have overused them. It’s not like bubbles or even vibration.... fizzy is how it feels. I can usually get rid of it by complete rest...

 

I have been told that these symptoms are Neuropathies.

Nerve pain, as someone mentioned above, is quite different and often an isolated problem with a clear cause (herniated disk in my case).

 

The insect crawling is typical for pheripheral neuropathies.

I had the cold water part for years. Have since discovered that during better periods, the “cold water areas” is the same areas as where I have consistent pain/tensions... It seems like my brain/nervous system misinterpret pain to cold water if I get numb enough.

 

Yes, I have pretty severe nerve damage = small fiber neuropathy tested by biopsy. I wish more could get this analysis as it is so simple to do and it is an objective marker.. I get pain and numbness as well on top of the fizzing/vibration & tremors. However I do wonder if the fizzing and vibration is related to electrolytes which are always off for me and hard to "balance."

When I saw a neurologist who did the "standard" tests it was inconclusive. God knows why more biopsies are not performed rather than guessing if a tuning fork is vibrating or trying to figure out if a stick placed on the lower extremities is hot or cold.

 

On reading the various posts, and the thread title, two other questions arise.

The first must be restricted to those with acute onset, not because I don't believe in insidous onset but because of the nature of the question. Were such sensations ever experienced before the onset of ME and were you aware of them soon after the original virus, or did they take time to develop? I can't really remember for myself, but it is forty years ago. I certainly reported it to doctors when I saw them three years after onset, when I failed to recover as assured I would.

The other question is whether the sensation is confined to the limbs. I think it is also in the trunk and torso. My other early way of describing it was to say that it felt as if every cell was vibrating.

 

I feel like there may be two different things going on. The NIH describes paresthesia this way:

This "burning or prickling" sensation pretty much aligns with a feeling I would describe as something akin to a sunburn just under the skin. It is a sort of "fizzing" feeling that mainly affects my lower arms and my mid-section below the chest. It's not as painful as sunburn, but it is chronic. Also, unlike sunburn, it's not worse when touched. My post-infectious onset was also almost forty years ago, but I think this feeling was noticeable in the first few months.

I think this paresthesia-type thing may be a separate sensation from what I would call an "internal vibration," which is more confined to the trunk of the body. This feels more like the "hum" of an electrical current that seems to come from deep in the body (as opposed to the "fizzing" which feels just under the skin."

I have no idea what the "internal vibration" is. If I ever told a doctor about it, it would have been early on, before I learned to keep silent about symptoms like this. I doubt it's an actual physical vibration of any kind. I'd guess it's in the peripheral nerves, or is just some kind of illusion arising from something chronic going on in the brain.

 

Interesting. That NIH description of paresthesia looks as though it might refer only to an acute condition. That "which happens without warning" is hardly relevant to a chronic condition of many years duration.

I would also say that the sensation appears to be under the skin. I don't think I can differentiate between other sensations.

To coin a phrase, "further research is needed".

 

Is ut usually painless? Not necessarily.

The buzzing, tingling, occasional numb patches - fine not painful, just annoying.

However, the burning, stinging business hurts. I've schooled myself not to react otherwise you can find yourself suddenly grabbing, inspecting and rubbing the affected limb mid conversation.

In fact one day I was standing on a red ants nest and was being bitten, didn't react because I was talking to someone and just assumed it was the symptom. Nope I was being stung.

 

I have read many reports from COVID patients of this happening in the acute phase. Of course the question remains of whether the ME develops right away and so this is also part of it, or whether this is something that develops in the pre-ME acute phase and just sticks around. Is ME locked-in early on? Or does it develop later?

But it's clearly also a reaction to the initial infection, so that's interesting. Question remains whether this is the virus' doing or the immune system's.

 

Dr. Ramsay wrote that there was often an interval between an infection and the initial symptoms of ME.

I take that to mean that the onset of symptoms can seem to be "without apparent cause" because the patient does not associate them with an infection in the recent past from which they have recovered.

This happened to me. I returned to work after an intense upper respiratory infection had kept me away for about a week. It took a few more days for me to feel fully recovered. About 12 days after that, I had the "alarming attack of vertigo" that Ramsay mentions. I did not associate it with the "resolved" infection from three weeks earlier until my doctor said my blood tests showed I was still recovering from that. Unfortunately, my symptoms continued to worsen even after my blood tests returned to normal.

I've often wondered if I would have developed ME if I had convalesced from that infection longer, or if it was, as you say, "locked-in."

 

Yup I see most of those patterns in COVID. So many who had a mild acute illness, thought they were recovered, then days or a few weeks later BLAM! hits the ME. In other cases it's immediate and just continues. Some remain ill and simply add symptoms to the initial mix. A common description is of waves of symptoms and a lot of those exact "wait, something's wrong" moments that seem to mark the ME locking in, whatever it is. It's going to be hard to elucidate that something but boy would I love to understand what this is.

I have to say that I completely sympathize with how maddening this must be to doctors. In software engineering those are the exact worse problems to figure out: unpredictable and hard to reproduce. But, still, not an excuse to just give up. I have worked harder to chase bugs on which no lives hinged than any of the BPS brigade ever worked their entire career. They never gave it any real efforts.

Basically it seems there were two choices when faced with this: either rewrite the book of medicine or bury the thing that requires a rewrite. Doing the right thing was a daunting task. The other destroyed millions of lives. The right choice was obvious and will happen regardless, just at the extra cost of millions of lives lost and trillions in economic losses. But as complex puzzles go this is an 11/10 on the WTF?! scale.