PEM: have you had "vibratory paresthesia" (the sensation of shaking/tremors when you're not actually shaking) ?

Bansaw

Bansaw

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For a few months now, mainly at night I have the vibratory paresthesia, which is a kind of nervous system disruption where you sense you're shaking (hands, body, legs) but you're not actually physically shaking.

Has anyone else had this, and what did you do about it ?

A brief history of it with me:
About 8 months ago I did a home ear syringe, and next day I felt off balance a little, plus I did some heavy mental work on the computer (I am an I.T. specialist). Maybe a combination of them both pushed me over the PEM edge.

Anyway, for weeks after I felt disorientated, had [perceived] muscle weakness that alternated daily between arms and legs, but not actual weakness as I could still lift the same amount of weight. Also experienced very noticeable loss of coordination, and decrease of mental energy.

Taking a break from the computer, and getting out in nature helped. It slowly got better. Then as it was getting better I physically over exerted and I was right back at square one. Right now, its very slowly improving, but I can find myself back at square one easily.

My doc said he didn't think I was early onset Parkinsons because I wasn't shuffling etc., but didn't rule out Multiple Sclerosis.
So I'm probably seeing a neurologist soon, but wanted to get some feedback from other CFS sufferers as well.

I am quite sedentary, and shallow breathing, had Lyme disease for many years, caught late.
 
Dysfunkion

Dysfunkion

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Yup big one with me in fact I had a real weird step backwards tonight involving this tonight. I also have Lyme that was caught too late and the only things that helped after my crash into severe were actually lyme herbals. I got my first decent rebound out with Osha Root and cistus incanus. they practically saved my life and if it wasn't for them I'd probably be at best right now just hanging over the pits of severe. Recently this all of what you're experiencing here hit my hard after getting covid that I got on the tail end of one of the worst migraines I have in over a year that I somehow got my immune system to respond with the most unfortunate full extent of and then when I rebounded out as I was feeling much better than I did before. I was on a roll for once! My body was so responsive to everything in normal ways, my CNS was regulating itself well enough, a higher PEM threshold I haven't had in quite a long time, no lead legs or head, ect.

Tonight though because I just need to screw everything up in fantastically weird ways. I decided to use my guitar amp which recently in small amounts of time at moderate volumes was ok but I accidentally set a dial too high and forgot to plug something in and got blasted with low end feedback, just like that I felt an inflamed feeling in my head, the phantom vibratory thing started again in the usually suspects, and I was less reactive to the world around me and felt like someone unplugged a wire in my brain that was plugged in from the rebound of an immune response I was able to get to a virus when my defenses were down. We'll see if (I pray I do) and how long it takes for me to bounce out of this one. I wonder if what we could be dealing with here is reactivations through activating nerves with the infection in it because otherwise I don't know how this would happen. We're exposed to vibrations all the time, when I'm outside I hear music twice as loud but then a stupid tone accident throws me a step back? It could be that specific nerves that it hit had the infection and then boom I got messed up again.

Now if I don't I wonder if I can induce a migraine that replicates how the last one began I will rebound back into a better state. If I can consistently do that then I think there is something to my idea that the body is failing to regulate a bunch of signalling pathways properly that for some reason in me/CFS patients has a lot of vulnerabilities in it that leads to a lot of the various subtypes of it. Normally I have cognitive PEM with no physical PEM unless it has to do with large series of smaller repetitive movements. Then I got physical PEM with the infection and then rebounded out into a better state then I was exposed to a loud SPECIFIC vibration and the signalling got messed up again. What a weird condition, every time I think I seen it all with this it surprises me with something far more bizarre. Currently though it's some parts of face and my area where I get the lead PEM legs with the phantom vibration thing going on. The most interesting thing about this though, it likely involved something getting hit that triggered in the middle ear from some kind of applied pressure. In my case it wasn't even a physical object.
 
Bansaw

Bansaw

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Dysfunkion said:
Yup big one with me in fact I had a real weird step backwards tonight involving this tonight. I also have Lyme that was caught too late and the only things that helped after my crash into severe were actually lyme herbals. I got my first decent rebound out with Osha Root and cistus incanus. they practically saved my life
Click to expand...
Sorry about your relapse, sounds frustrating. Maybe we share a trigger - the ear. For me maybe it was a ear syringe gone slightly wrong, coupled with a substantial mental exertion at the same time.
I tested positive for Lyme (actually I have Endemic Typhus, the very close sister of Lyme, same thing basically. 9 years I had it before it was discovered and diagnosed). Can I ask more about lyme herbals - Osha Root and Cistus, do you have a good link I can learn more about that, I'm interested.

Being out in nature for a low intensity walk seems to help, but being back at the computer can make me stall my recovery or relapse slightly. Which is unfortunate because my job (and hobby) is at the computer daily.
 
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K

kushami

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I don’t have this myself, but I have seen it mentioned often in autonomic circles (patients and specialists) as well as ME/CFS and LC forums.

I therefore wonder whether looking atvthe autonomic aspect, e.g. orthostatic intolerance, might help.

It sometimes gets called “internal tremor”.

Here’s a search on a dysautonomia forum that usually has good content:
https://www.dinet.org/search/?&q=internal tremor&search_and_or=and
 
Dysfunkion

Dysfunkion

Senior Member
Messages
429
Bansaw said:
Sorry about your relapse, sounds frustrating. Maybe we share a trigger - the ear. For me maybe it was a ear syringe gone slightly wrong, coupled with a substantial mental exertion at the same time.
I tested positive for Lyme (actually I have Endemic Typhus, the very close sister of Lyme, same thing basically. 9 years I had it before it was discovered and diagnosed). Can I ask more about lyme herbals - Osha Root and Cistus, do you have a good link I can learn more about that, I'm interested.

Being out in nature for a low intensity walk seems to help, but being back at the computer can make me stall my recovery or relapse slightly. Which is unfortunate because my job (and hobby) is at the computer daily.
Click to expand...

It is and how weird what can cause relapses like this are makes people not even take me seriously. There was a post on a reddit I forgot the link where someone was able to induce a lot of immune and neuro-psychiatric effects by putting their finger in a bad ear where there was some discomfort on and off with tinnitus which I am also able to do in my bad ear which is my right ear. That one has the pressure upon being triggered, the tinnitus spikes, and discomfort upon being triggered that only turned into actual horrific pain when I had covid which I'm still somewhat getting over (a little coughy and my voice is still a bit screwed up as of today).

On the Lyme herbals I just read what a bunch of people on the lyme subreddit did and tried a bunch of it, what worked were those things. Osha root is very powerful though, a dose of it can knock me out for an entire day if I take a full one of the extract capsules but early I did just a few a week and eventually out of getting tired of the side effects I just stopped but I retained the benefits they gave me with a reduction of what felt like inflammation in my head, less anhedonia, clarity of mind, and skin sensation back (I lost this on my last housebound crash). I drank the cistus a few days of the week to start and over time increased my amount of days drinking it since I wasn't able to take the initial side effects every day early on which were brutal insomnia and wild mood swings. Soon I was on it every day and now it's just part of what keeps things in line, I have much less energy on all fronts if I stop drinking it. I just have one bag of it every evening.

I go a bit nuts if I'm stuck inside too much even though my hobbies are inside too. I found what matter most to me is keeping my cognitive PEM threshold high enough to the point where normally work I enjoy doing won't hit as hard and I'll still have energy for the day to do other things too. If that falls too much then I'm in anhedonia hell and in that case I won't do anything but occasionally throw on something I don't care about on youtube all day and sometimes eat some food. My life is a real mess right now since I spent all Summer and then some fighting my way back to mild island and I am so disoriented with how much time I lost and what I want to do with my life from here on out.
 
2

2Cor.12:19

Senior Member
Messages
288
@Bansaw - the nerves in my legs have been vibrating ever since I first got ME/CFS almost 40 years ago. It’s especially annoying in the middle of the night. My ME started with an acute Epstein Barr Virus infection and the vibrating paresthesias are due to nerve damage. Both EBV and CFS can cause this. Over the years it slowly progressed into Axonal Polyneuropathy. Paresthesias come in all sorts of weird sensations and this and neuropathy are very common with ME/CFS.

I also have sleep apnea and shallow breathing when I sleep. The paresthesias in the night are much stronger when I’m not breathing normally. This is due to autonomic nerve damage.

Paresthesias in Fibromyalgia and Chronic Fatigue Syndrome
 
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Bansaw

Bansaw

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Messages
525
@Dysfunkion @2Cor.12:19
I too have anhedonia, I think after years of exhaustion. I might try that Osha and Cistus, although you mentioning insomnia worries me since I've had real struggles with that in recent years. I don't want to revisit that.
I did hear that the kind of Osha root is best if its "Sardinian" or something like that.

During the course of the weekend I did more investigation and came across Dr. Klinghardt, and not just his Lyme protocol but his Lymph drainage neck massage too.
I did some self massage and felt a very noticeable benefit. I might investigate that further. I also tried a little of the Perrin technique for the first time. Some brain fog lifted.
Another thing he mentioned was the Stellate Ganglion block which could also be relevant for me since I've had ptsd. I feel I might have stumbled on something which could be significant.
 
Dysfunkion

Dysfunkion

Senior Member
Messages
429
Bansaw said:
@Dysfunkion @2Cor.12:19
I too have anhedonia, I think after years of exhaustion. I might try that Osha and Cistus, although you mentioning insomnia worries me since I've had real struggles with that in recent years. I don't want to revisit that.
I did hear that the kind of Osha root is best if its "Sardinian" or something like that.

During the course of the weekend I did more investigation and came across Dr. Klinghardt, and not just his Lyme protocol but his Lymph drainage neck massage too.
I did some self massage and felt a very noticeable benefit. I might investigate that further. I also tried a little of the Perrin technique for the first time. Some brain fog lifted.
Another thing he mentioned was the Stellate Ganglion block which could also be relevant for me since I've had ptsd. I feel I might have stumbled on something which could be significant.
Click to expand...

When I was at my worst I had some swelling in some nodes on one side of my neck, that just went away on it's own eventually and never returned. I tried the drainage massages and they didn't help anything personally but then again I'm no professional massage therapist so I was highly likely doing it wrong. I've heard of that block too but I personally am staying away from it since I think it also has high potential to go very wrong any time you're actually blocking a nerve. I also don't know if its reversible, even if it turns out to be I still won't be signing up for that.

I also have PTSD and of course working on that has helped greatly lower my daily stress levels which obviously will improve your health to some degree and lower consistent cognitive loads but I can tell the difference when I'm having a bad reaction to something immune system wise rather than a sudden spike in anxiety due to trigger shock. If something for example spikes my anxiety while doing something strictly health wise that lowers the threshold for experiencing anxiety that thing of course will feel much worse and eliminating the trigger may be the difference if the original health trigger for the lowered anxiety threshold was bad enough between triggering a panic attack or being close to one though. You just gotta know yourself inside and out very well. I've never had a PTSD trigger, trigger the brain fog I get from for example consuming a food that induces it specifically. My triggers engage a high fight/flight loop and shut down the ability to relax to a degree depending on how severe the trigger was. This leads to disorientation with immediate tasks at hand and some cognitive dysfunction from the sudden high strung state where I'm going to have a lot of brain farts but it's nothing like the for example in my case reaction to eating beef that will be a whole different world of brain fog and cognitive dysfunction.
 
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