Tremors all over, pins and needles in hands and feet

[Squeezy]

I've started getting tremors these last few weeks, and they went from are-they-really-there to undeniable and scaring my kids.

Typing this isn't easy, with fingers juddering around the keyboard.

I also keep dropping my phone on my face. I have to hold it with both hands and steady it on a cushion on my chest. I'm feeling them from elbows down to fingers now, sitting down typing. And knees down to toes when I get up and walk about.

But sometimes the tremors completely vanish! It's very odd.

I'd been wondering if it was low blood sugar at first, because my appetite isn't great and I leave too long between meals. So I started eating more regularly. Turns out the tremors ARE in fact much much worse if I go too long without eating. But they're still there even so.

I'm seeing a neurologist in a couple of weeks about my migraines and of course I'll talk to him about this. I'm worried he'll be horrible, so my confident friend is taking me.

I keep telling my kids it's probably a random ME thing because they're very worried. But could it be?

I also get perplexing pins and needles in my fingertips when I type, wash, wipe counters - generally press on them. And when I prop myself up in bed, random fingers and thumbs go numb/pins and needles. And toes. That numbness is creeping towards my heel. Also happens if I lie on my side. Random toes and fingers on that side get pins and needles.

I'm very grateful there's no pain with any of this weirdness.

Has anyone had this or heard of this?

Thanks.

 

[NelliePledge]

I am mild/moderate I have had just a handful of experiences of tremors - internal shaking inside my torso and I eventually identified what I think was provoking them which was low dose of pregabalin I have on prescription. Tremor is a common side effect. Obviously everyone is different and this may be irrelevant to your circs @Squeezy

 

[Squeezy]

Thanks so much @NelliePledge
I've been taking the same medications, at the same doses for over 12 years. I have wondered if it's possible to develop side effects after such a long time?

I've been taking the same generics of them for ages.

 

[Invisible Woman]

Hi @Squeezy

This may not be at all relevant to you but just in case ...

I had tremors ranging from I can feel but barely see 'em through to having difficulty eating.

I have had similar tremors in the legs & feet.

Usually this happened when I was doing too much of a repetitive activity. If that was writing it might primarily be one hand but I could trigger it in all limbs at once. Especially if I was constantly overdoing it enough to be well enough to keep going but putting myself in constant mildish PEM.

While I was in PEM (but before I understood it) my posture was badly affected. Also I am on the small side - not tiny just a bit below "average" . So I would sit funny & slump and prop myself up weirdly. I got weird problems & numbness, tingling etc in arms & hands, legs & feet. A good physio picked up on it. I was causing the issue with placing added strain and cutting the circulation off to parts of my arms and leg. Due to the constant background noise of feeling awful plus pain & poor cognitive function I hadn't noticed.

Also, and possibly most relevant for you, thyroid issues can cause pins, needles, numbness & weakness of the extremities. Here's a lovely long list of symptoms courtesy of Thyroid UK (funnily enough it is much longer than the NHS symptom list)

https://thyroiduk.org/signs-symptoms/signs-symptoms-underactive/

I've been taking the same medications, at the same doses for over 12 years. I have wondered if it's possible to develop side effects after such a long time?

Would do no harm to investigate the known side effects - as we age a bit our tolerance to certain drugs can change - though I know you're not exactly elderly!

Good luck with the neuro!

 

[Squeezy]

@Invisible Woman Thanks for the thyroid info. I hadn't thought of that troublesome thing being the cause of this. It can cause so many bizarre symptoms!

Usually this happened when I was doing too much of a repetitive activity.

Gosh, I wish I had the energy to do a repetitive activity! Still too crashed to do anything for more than a couple of minutes. But I understand what you mean.

So I would sit funny & slump and prop myself up weirdly

Yes, it's so much more comfy to slump down when we don't have the energy to hold ourselves upright in good posture. That takes energy! I've been paying attention to this recently, in case I've got a painless trapped nerve causing the problems. Right now I'm sitting, well supported, in an armchair. No slouching. And my left foot is still feeling flipping weird. And my hands and elbows are shaky.

Being so ill still, if I'm doing the tremors and pins and needles to myself with posture, (which would be great!), I'll be stuck with it until I improve.

Which is taking too annoyingly long!

 

[rvallee]

Yes and I have seen many reports from COVID patients. It seems uncommon but not rare.

It was one of my earliest major symptom. Very scary. Over the years I have experienced it many times. It seems to be relatively harmless, you just have to let it pass. I'm sure there is medication that would help for that but not as long as our BPS overlords block research, this is the kind of stuff that automatically goes to the FND bin as anxiety or whatever.

I don't take any medication so I doubt it's particularly significant, it happens regardless.

I have never managed to find a trigger or anything to explain its onset. But it has never worsened or lead to anything worse.

 

[Trish]

Hi @Squeezy, I'm sorry to hear you are suffering yet more confusing symptoms. It sounds like it's good news that you already have a neurology appointment booked and can ask about it there. Maybe worth making some notes between now and then about when it happens, how long it lasts etc to take with you.

 

[Squeezy]

@rvallee Hmm, maybe I've had silent Covid and this is an after effect. I've not been muggle-ill for years. I have slightly high white blood cells as a side effect of taking lithium, which I think has kept all infections at bay. Maybe a novel Covid prevention strategy... Or not.

It was one of my earliest major symptom. Very scary.

I'm sorry you suffer from this too. But it's comforting to hear it hasn't worsened. I really don't want the neurologist to send me off for an MRI and other tests for no good reason.

Just not worth the crash.

Oh, and the FND bin and anxiety - exactly!
Effing doctors. Regardless of ME, doctors put symptoms into these trash cans out of laziness, ego and prejudice.

 

[Squeezy]

@Trish I've made some notes, but I hadn't thought about how long it lasts. That's important. Thank you!

 

[rvallee]

@Trish I've made some notes, but I hadn't thought about how long it lasts. That's important. Thank you!

Oh good point.

For reference I had a few episodes, especially early on, lasting a few hours. The first one was brutal, happened after a sudden loss of consciousness while I was watching TV at home. It lasted for a few hours during which I was constantly on the verge of losing consciousness again. The next morning I woke up relatively OK, enough to go to work but definitely felt off.

Since then it's on the order of about 1h, sometimes a bit more but rarely. It may linger a bit after but more subdued. Just interested in comparing here. I haven't seen much reports about duration so I'm curious. It does look like the same phenomenon.

To me it feels as if I'm freezing cold and shivering to make heat, but only feel a bit cold. Maybe not something as familiar to people who don't have harsh winters .

 

[Milo]

@rvallee Hmm, maybe I've had silent Covid and this is an after effect. I've not been muggle-ill for years. I have slightly high white blood cells as a side effect of taking lithium, which I think has kept all infections at bay. Maybe a novel Covid prevention strategy... Or not.



I'm sorry you suffer from this too. But it's comforting to hear it hasn't worsened. I really don't want the neurologist to send me off for an MRI and other tests for no good reason.

Just not worth the crash.

Oh, and the FND bin and anxiety - exactly!
Effing doctors. Regardless of ME, doctors put symptoms into these trash cans out of laziness, ego and prejudice.

Hi @Squeezy lithium toxicity includes tremor, and it may be useful to get your Lithium blood levels checked just in case, even if you have had the same dose for a long while. Sometimes, your drug clearance changes due to liver or kidney function.

https://en.wikipedia.org/wiki/Lithium_toxicity

 

[Squeezy]

It lasted for a few hours during which I was constantly on the verge of losing consciousness again.

That sounds very alarming. I've had nothing remotely like that. Did you get it investigated at the time, or did you wait to see if it would just go away?

Since then it's on the order of about 1h, sometimes a bit more but rarely. It may linger a bit after but more subdued

Your tremors sound much more dramatic and longer lasting than mine. When mine appear, and are more disruptive, they seem to settle down within about half an hour to smaller vibrations.

I didn't have a single one yesterday, when I was totally exhausted and ate badly, sleeping too long. Other days, leaving eating too late would have set them off.

To me it feels as if I'm freezing cold and shivering to make heat, but only feel a bit cold.

Oh, nasty. I'm pretty used to shivering, having been a student in the north of England! My tremors don't go through my body anything like so dramatically. I feel just a faint murmur of a vibration. Its really focused in my hands up to my elbows, and if I'm standing from my feet up to my thighs.

So to me it looks like a different phenomenon going on with me. Perhaps a late onset side effect from one of my medications, a thyroid annoyance, or a blood sugar thing.

 

[Squeezy]

lithium toxicity includes tremor

Thank you Milo! This is really helpful.

I was zonked yesterday, but started reading up on this. I had my regular lithium blood test, together with liver and kidney function tests about 3 months ago, but something could have gone awry since.

I'll phone my GP.

 

[Milo]

Thank you Milo! This is really helpful.

I was zonked yesterday, but started reading up on this. I had my regular lithium blood test, together with liver and kidney function tests about 3 months ago, but something could have gone awry since.

I'll phone my GP.

It’s just a possibility amongst others, but somehow i remembered my nursing lessons. It is worthwhile to get it checked out and rule it out. I am sure the neurologist would have reviewed your meds anyways. Sending my best wishes.

 

[Invisible Woman]

Perhaps a late onset side effect from one of my medications, a thyroid annoyance, or a blood sugar thing.

Re the blood sugar - I get tremors when I need to eat but while they may initially be most obvious in the hands, they quickly become felt throughout the body & are accompanied by feeling very weak.

I don't know if others experience this differently.

 

[Invisible Woman]

I don't want to make assumptions about your age etc @Squeezy but there is a possibility that women with ME may go through menopause a little earlier and be more likely to suffer complications like hormonal imbalance.

Perimenopause can start a good decade before the onset of menopause. The average age (UK) of menopause is early 50s. So it is possible for hormone disruption to begin in the early 40s.

Menopause and hormone imbalance can trigger fluctuations in thyroid output & absorption/use of replacement thyroxine, potentially triggering symptoms.

It's probably not relevant for you at the moment Squeezy but something for women to keep in mind if things get weird & inexplicable in your 40's.

 

[rvallee]

That sounds very alarming. I've had nothing remotely like that. Did you get it investigated at the time, or did you wait to see if it would just go away?

Kinda. The first time it happened I more or less ignored it. When it happened again I went to the hospital, looked possible cardiac so that's pretty much the only thing that was tested. My heart was thoroughly checked, then again later because of what is probably costochondritis. Your description sounds similar, just maybe more intense for me. It was really weird seeing this being described by COVID patients. I had seen a few similar reports and even a few videos over the years but this really brought it home.

By the time I was able to see my GP, about 3 months or so later, I had had many more symptoms and I'm pretty sure I explained it all wrong. I was so confused, was barely able to read and losing my thoughts. My GP did not even notice it. What a crock that GPs know their patients, he'd been my GP from birth and couldn't even tell I was severely impaired.

Later when I tried finding another physician who would help I was at the point where it was hard to keep symptoms to a single page and we all know how that plays out with doctors. So I can't really say it was investigated, it just got lost in the mix.

 

[Squeezy]

@rvallee How aggravating.

I was so confused, was barely able to read and losing my thoughts. My GP did not even notice it. What a crock that GPs know their patients, he'd been my GP from birth and couldn't even tell I was severely impaired.

I'm so relieved for you that you got your faculties back, despite your GP's lack of care. What an unprofessional jerk.

I haven't watched TV news for a couple of weeks, so I've missed seeing tremors described by Covid patients. It's interesting.

Costochondritis is definitely way worse than my tremors - I hope you're not suffering from it now.

was at the point where it was hard to keep symptoms to a single page and we all know how that plays out with doctors.

Yeah, a whole list of things confuses the poor GP's. It's like they've never encountered diseases with more than 4 symptoms. Tragic state of medicine.

 

[Squeezy]

Re the blood sugar - I get tremors when I need to eat but while they may initially be most obvious in the hands, they quickly become felt throughout the body & are accompanied by feeling very weak.

I do too! But usually it's accompanied by feeling dizzy, ravenous for sugar, and a desperate need to sit down. I've been experimenting with eating every 2 and a half hours - a few nuts, bit of banana, yogurt etc - but I still get them. Like I said, they're weaker if I've eaten, stronger if I've left it too long.

Another experiment on top of this is to keep moving while having the tremors. Because I don't have that desperate need to sit down that I usually get with low blood sugar - which I only ever got if I was out and pushing it when my ME was mild.

I can keep moving with no problem. No dizziness, none of the other usual symptoms I get.

By moving, I mean trying to type, playing with my dog sitting down, making a sandwich or tea, sitting down. Sorting laundry, sitting down. But I think I'd feel the need to lie down if it was low blood sugar. I don't feel any weaker than normal. My normal, obvs.

I'll definitely ask my GP though! Thanks!

 

[Squeezy]

Menopause and hormone imbalance can trigger fluctuations in thyroid output & absorption/use of replacement thyroxine, potentially triggering symptoms.

Oh, thank you! I'm 45. Definitely could be an issue!

I don't have any of my usual symptoms of low thyroid - husky voice, hair loss - but as you know there are a crazy number of symptoms that I could have, and might be concealed by my other health problems

It would be a great idea, and I'm probably due, as I've already got progesterone issues I'm treating, to get my hormones tested.

Thank you