JohnPepper9 years ago

Hi earthdweller. I don't really understand what you mean by 'internal tremors' Do you mean that only when you use your hand it shakes? Or do you mean that when you use your hand it shakes but nobody can see it?

A resting tremor happens when you are doing nothing, just sitting or standing still and one of your hands shakes. The moment you start using the hand, the shakes disappear.

The other kind of tremor, which happens when you try to fasten a button or clean your teeth, is called an essential tremor (I think!).

John

earthdweller in reply to JohnPepper9 years ago

Hi, internal tremors are tremors that are pretty much invisible to anybody else but me. To me it feels as if my hand, foot, neck etc.. is shaking, but when you look at them they're not actually outwardly shaking.

For me these tremors tend to happen most when the areas are at rest.

Reply (2)Report

JohnPepper in reply to earthdweller9 years ago

Hi earthdweller. I have never come across this before. What does your neurologist tell you about it?

John

Reply (1)Report

earthdweller in reply to JohnPepper9 years ago

Hi, when I saw a neurologist a while ago they dismissed all of my symptoms as probably stress-related. When I recently visited the GP to be referred to another neurologist she also thought they were probably related to stress. I do have a lot of stress in my life, but my symptoms are very consistent with how my mum's Parkinson's developed.

I also have EDS, which can have similar but, (as far as I can tell), subtle differences, so it's very confusing.

I've just seen that there is quite a bit on internal tremors on this site. This is a useful page discussing internal tremors in Parkinsons: healthunlocked.com/parkinso...

Reply (2)Report

Pelley in reply to earthdweller7 years ago

The ONLY thing that deals with the inside tremor (answering my cellphone when it vibrating)problem has been Acupuncture. Once every 2 weeks or so does the for me.

Reply (3)Report

Papagorgio in reply to earthdweller3 years ago

Hey, any update on this? I’m experiencing the same thing. Wondering how you’ve been? Please let me know. Thank you.

Reply (1)Report

Hidden in reply to earthdweller1 year ago

Ihave internal tremors thousands daily

Reply (1)Report

PDWarrior1900 in reply to Hidden6 months ago

what's your situation today? i have the same symptoms for almost 2 years

Reply (0)Report

Pete-1 in reply to JohnPepper9 years ago

For me this happens when a muscle is being used and it tends to be when the muscle concerned is already exhausted perhaps because of minor tremors that you may be unaware of exercising the relevant muscle.

The sensation is just like that when you have exerted yourself in some way more than you are used to. Just as when exercising at the start of a fitness drive and you perhaps overdo it and you feel all weak and wobbly and perhaps a little sick. .

I find that if I get a sensation like this it augments any feelings of anxiety or fear that I already have..

Bit tricky to adequately describe this internal tremor thing.

Reply (2)Report

metacognito9 years ago

I think that most of us with confirmed cases of Parkinson's are not confused by the term "internal tremor". The sensation of subtle neuro-muscular turbulance (internal tremor) typically precedes the more outwardly visible tremor in the course of the disease. 'Parkinsons.org.uk' answers your question as follows ('Will my tremor get worse as my Parkinson’s progresses?'):

"Medication may help control this symptom, but Parkinson’s tremor does usually get worse over time.

However, generally this is quite a slow process that occurs over several years. For many people with

Parkinson’s, their tremor isn’t constant and comes and goes. How it affects them can also change a lot.

"Some people also experience an ‘internal tremor’. This is a feeling of tremor within the body, but it isn’t noticeable to other people."

parkinsons.org.uk/sites/def...

earthdweller in reply to metacognito9 years ago

Thanks metacognito. Yes, I do mean tremors that are pretty much invisible to anybody else but me.

That description that you've given does sound a lot like me, as the internal tremors aren't constant, they come and go, and at some points over the last few years have gone away for months and then come back again.

It's annoying, to say the least that this internal tremor usually proceeds an outward one. I think I could cope better knowing that I'll only have these internal ones. Hm.. well, here's hoping for very slow progression!

Reply (2)Report

Mars54 in reply to earthdweller7 years ago

Have you found out anything new in 2 yrs since this post as I have been having internal tremors and vibrations for past 2 yrs with no real progress on finding out why tried many different meds no change and just started Xanax as one dr thinks may be stress and anxiety . It's strongest on the left side of body but can be felt throughout .

Reply (1)Report

earthdweller in reply to Mars547 years ago

Hi Mars,

I still don't actually have a diagnosis of parkinson's, so I'm not sure my answer will be very helpful.

I've had lots of parkinson's related symptoms for a long time and I still have them, (rigidity, facial 'stiffness', dragging leg sometimes, GI issues etc..), but the GP thinks it might be down to stress, my ehlers danlos syndrome or some kind of autoimmune disorder. I still think I have early PD, my symptoms certainly match up to a lot of PD symptoms, and are similar to my mum's early symptoms. But I'm not really pushing a diagnosis as there's not much that can slow things down, other than exercise. And I've been doing lots of pilates/balance type exercises and boxercise, as well as fast walking when I get the chance. While it's manageable I'd rather just carry on like this.

As far as the right-sided internal tremor is concerned, I still notice it sometimes, particularly when my stress is very bad, (I manage my mum's care so life is v. stressful). And I can definitely tell that my right side is weaker than my left.

Over the last two years though this hasn't got any worse or progressed to visible tremors. Of course I don't know how long this will continue for, who's to say what's round the corner. I think that the exercises have definitely been helping things, in terms of improved balance, stress relief and core strength.

But like I say, I don't know for sure that I have PD, so I'm not sure how useful this long answer actually is!

Reply (2)Report

Mars54 in reply to earthdweller7 years ago

Still frustrating to not know why I feel these internal vibrations and tremors .

Reply (1)Report

earthdweller in reply to Mars546 years ago

Could it be from pinched nerves? Due or not due to PD?

Reply (0)Report

jaynesally in reply to Mars546 years ago

I have this too it's getting me down inside and out tremors but my left side awful xx

Reply (0)Report

PDWarrior1900 in reply to Mars546 months ago

i have internal tremors for the last couple of years. Please update us on your situation, thanks

Reply (0)Report

Pete-19 years ago

Yes, I've wondered about that as well.

earthdweller in reply to Pete-19 years ago

From my quick bit of research it seems that some people think that these internal tremors do worsen and become visible tremors as the disease progresses, (see above post by metacognito about parkinsons.co.uk).

But some sources say that these types of tremors are unrelated to visible 'external' tremors. For example, in this discussion at healthunlocked.com/parkinso..., olpilot quotes a study by the Department of Neurology at the University of Miami School of Medicine that says internal tremors seem to be part of the sensory symptoms that some people get with Parksinson's, but are "unrelated to Unified Parkinson's Disease Rating Scale score, Hoehn and Yahr stage, duration of disease, or the presence of observable tremor"

I'm not sure about the credibility of this survey as it was quite small. But I guess like anything this probably differs with each person.

Reply (0)Report

Pete-19 years ago

Yes, I've wondered about that as well.

gmunsot9 years ago

I know what are you talkink, my english is very little but i'll try to explain that happens the same to me, I fell the tremor "inside my body" since my feet until the heath, some times is less. I associated with anxiety.

No body notes but as I fell it my unbalance increassing.

Today i´ll visit my psychiatric and tomorrow my neurologist for this purpouse.

If you wish, I can write what they tell me about it.

Regards

Guadalupe

PatV9 years ago

My initial (and still worse) symptom was a stiffness in a muscle that runs from inside my thigh and into my abdomen. Causes me to walk like dr. frankinstein's assistant, Igor. The pain it causes in my ab is like an internal tremor. But I've never had tremor. Thanks to sinimet I can move my ankle and than ks to exercise and pt I can walk pretty good most of the time. DX 10 years on sinimet 7. Maybe your 'internal tremor ' is a kind of dystonia. Is it painful? Tremors are tiring, but my pwp friends tell me they are not painful.

Susie019 years ago

The feeling that I was "shaking inside" was the first symptom I reported to my doctor, almost 10 years prior to my diagnosis. For me, It was a whole body feeling, not confined to an extremity. The tremors in my hands, jaw and legs followed.

earthdweller in reply to Susie019 years ago

Thank you Susie01, that's very interesting to me. I haven't been diagnosed yet, and have found it difficult to get anywhere with all my symptoms so far being ones that nobody can see. It seems like you had these shaky feelings a long time before anybody took you seriously.

Yours sound a bit different in that they were a whole body feeling. My internal tremors seem to be progressing like regular Parkinson's tremors do, starting with one side of the body, staying a while and then spreading to the other side. So I wonder what this means for the future. Will I have visible tremors that take this same path? Probably impossible to predict. And in some ways I suppose that's a good thing!

Reply (1)Report

Susie01 in reply to earthdweller9 years ago

Looking back, my earliest symptoms were the sense of internal tremors, stooped posture, vocal changes and lack of facial expression. Friends remember a tremor which I discounted as due to my carpal tunnel syndrome (sigh!). Retrospectively, these signs were there for almost 10 years prior to diagnosis. By the time I was diagnosed, I had bilateral tremors, worse on the left and was hardly able to walk at times. It was scary.

Reply (0)Report

PDWarrior1900 in reply to Susie016 months ago

I also have thousands of internal tremors daily. Please update me on your situation. thanks for the feedback

Reply (0)Report

Yewaletea2 in reply to Susie015 years ago

What were you diagnosed with?

Reply (0)Report

Susie019 years ago

A side note, I still have the sensation of my whole body shaking when I lie down at night to sleep. Even after diagnosis and treatment with Sinemet and Azilect. Also, though I may not appear to have a visible tremor, if I hold something it will shake.

earthdweller in reply to Susie019 years ago

Yes, I really feel these internal tremor sensations when I'm lying in bed at night. That's weird that your medication doesn't turn them off. Does that mean they're not related to dopamine loss?

I can sometimes silence them with relaxation exercises, but I think that's because with all of our symptoms stress really brings them out, and conversely when we're calm they can go back in again.

Reply (1)Report

LostinSpace2 in reply to earthdweller6 years ago

I have been experiencing internal tremors the last few months. They are in my heart/chest area, calves, and head. No one can see them from the outside. They wake me up at night, especially the ones in the chest. They are causing me to have headaches I have never experienced before. My doctor gave a MRI and found nothing wrong. Did an EKG it was normal. And, I will wear a holter monitor to record my heart beat to look for irregularities. I did have a grandfather who had Parkinson's Disease. My mom has tremors and her head shakes. The only way I get them to stop is to move around.

Reply (1)Report

Leilani23 in reply to Susie018 years ago

Susie, I know you wrote this 2 months ago, but I just read it. I'm curious about your comment about whole body tremors. My neurologist recently told me he now has some doubts that I have Parkinson's because I have whole body tremors in addition to one sided tremors. What do you think about that? I'm so confused by him.

Leilani

Reply (1)Report

laglag in reply to Leilani238 years ago

Leilani, I have recently started having full body tremors at night (last 6 mths). I was dxd 11 yrs ago & only started having tremors in the last year or so on my left side & my head & mouth sometime shake (PD started on my right side). Haven't mentioned the full body shakes with my doctor yet, but I will in January & let you know what she says. Did your doctor say what else it could be?

Reply (1)Report

Leilani23 in reply to laglag8 years ago

No, Laglag. Because I've had a 30-plus-pound weight loss this year in addition to the full body tremors, which he says are NOT PD, he thinks it could be a neurological symptom that is possibly related to cancer. So I'm undergoing a lot of tests of other parts of my body that have so far all been normal. Based on my other symptoms (jaw tremor, one sided arm/hand tremor, constant fatigue, constipation, incontinence, shoulder and hip pain), it seems I fit within the original diagnosis of PD.

Please do let me know what your doctor says about the full body shakes. I'd really like to know. Thanks!

Reply (1)Report

PDWarrior1900 in reply to Leilani236 months ago

Hi Leilani, I also have thousands of internal tremors. Please update me on your condition. Thanks for the feedback.

Reply (0)Report

Susie019 years ago

Wish I knew what the cause is! I have talked with others with PD who have the same sensation. It does make it more difficult to fall asleep when you feel like your whole body is shaking!

Leilani23 in reply to Susie018 years ago

I know! And my husband complains about the bed vibrating!

Reply (3)Report

Mars54 in reply to Leilani237 years ago

I feel like bed is vibrating but husband doesn't feel it or vibrations in my leg .

Reply (3)Report

Hidden7 years ago

I had, prior to PD diagnosis, internal tremors and still have internal and external tremors. Since I am on Parkinson's meds & have both I would surmise that a drug/treatment has nothing to do with whether or not there would be progression.

I do have the same positional aspect of tremor you noted.

I think I recall another person here talk about 'invisible' tremor. If you can find that post he/she might have other information on this.

Regards,

Peter

newcomer16 years ago

I have had a couple of strange sensations over the past years that I thought to share here. I am so glad to read that I am not alone with regard to the internal body tremors. About 2 years ago, I noticed strange electrical impulses coming down my neck, experienced a loss of balance. The symptoms disappeared over time, but given their neurological nature it has made me wonder if this was some type of a viral infection. My current symptoms are a sore feeling in my feet and lower legs after getting up. And internal tremors, but they are variable in intensity day by day.

earthdweller in reply to newcomer16 years ago

Yes, this describes something I get. And the other symptoms you get. It is all variable, but I think they are linked to headaches, which seem to be brought on by different neck/sleeping positions, and stress.

Reply (1)Report

FreedomLover in reply to newcomer16 years ago

I just started having internal full body tremors whenever I turn over in bed! It stops when I stop moving! It just scared me that it has happened a few days in a row, EVERY single time I roll over!

Reply (1)Report

Forestside6 years ago

Have you had your vitamin b12 levels checked?

earthdweller in reply to Forestside6 years ago

Not sure if that question was directed at me or newcomer1, but I have had my vit B12 levels checked, and they were super-high. Much much higher than the usual maximum levels. I was concerned about this, but several doctors said "the higher the better", and "it's better to be too high than too low".

My concerns were that some kind of cancers produce sky-rocketing B12 levels, but they assured me that the rest of my levels were normal, and so this was not indicated.

Further reading online (non-medical sites though), has suggested that blood tests don't correctly show how much B12 is actually absorbed by your body. So you could have a high amount of B12 in your blood, but the amount that is actually used can still be very low. Not sure how that works, or if it's really true.

Reply (1)Report

alexask in reply to earthdweller6 years ago

earthdweller - did your internal tremors ever turn into visible ones?

Reply (0)Report

Barbara-416 years ago

I have a PSP diagnosis. I have internal tremors on and off in the upper half of my body. I hate the feeling. Anyone know of anything that makes it stop? Occasionally I have small movement tremors in my hands and large jerks. My leg will kick, mostly in bed and my arm will make a small intended movement into a very large one.

BarB

DennyW5 years ago

Internal tremor can be from B12 deficiency, which is often associated with Parkinson's. I get this in the entire front half of my face, always coupled with tinnitus. While I've not yet been doing weekly shots long enough to know if it will fully heal, others with B12D who self-inject say it can take months, or even a year or two, but this does eventually go away. Getting evaluated for B12D is tough. If you've taken a B12 supp in the last 4 months you will show a false-normal reading. Even more confusing, some of us have elevated B12 in serum due to a transport issue, but we still have deficiency and need shots. Doctors are notorious for not understanding this and undertreating people, which is dangerous considering the impact of non-treatment, which is often irreversible nerve and brain damage. If you decide to seek a diagnosis, the methylmalonic acid test (MMA) is considered most accurate.

beccainnyc4 years ago

I think its anxiety, nerves, unresolved trauma, or if you are active, normal chi energy

beccainnyc4 years ago

One more thing...it you take alot of b vitamins, that will do it

Discogs_discogs1 year ago

Does anyone have updates on your diagnoses from this old thread? Did your internal tremors eventually evolved into external tremors?

laglag in reply to Discogs_discogs1 year ago

I still have the inside tremors and visible tremors. They are both mostly during my "off" time. The neurologist said part of it is anxiety.

Reply (1)Report

HekateMoon8 months ago

I read about internal tremors in Howard Shifkes (hope spelling is ok)book. He seems to have used chi kung to deal with this as well as his Pd.

PDWarrior19006 months ago

I just came across this post that is '8' years old. Wow. I have the same symptoms. If you are still active on this forum, please update us on your situation, thanks!