Trembling inside

[Valerie Madison]

In the last month I have been feeling like my whole body is trembling inside. It is especially noticeable when I am laying down. Has anyone else had this symptom?

 

[Remy]

In the last month I have been feeling like my whole body is trembling inside. It is especially noticeable when I am laying down. Has anyone else had this symptom?

Welcome to the forums!
Yes, I had this for some time...I called it "internal shaking". I think it is not uncommon to have this symptom.
I chalk it up to a dysregulated nervous system, high or low cortisol, and sympathetic overdrive. You might think about doing a salivary cortisol test to see if your values are out of whack.

 

[Not dead yet!]

In the last month I have been feeling like my whole body is trembling inside. It is especially noticeable when I am laying down. Has anyone else had this symptom?

Welcome! Yeah I had this for a long time. I manage it now with magnesium supplements and GABA. Not sure if that helps you, but for me, this worked. I used to think it was due to low dopamine, but I wasn't able to directly affect that without amphetamine drugs (which I took briefly in an attempt to lose weight, it was phentermine, prescribed by an MD). I don't think that's a great solution, but if someone needs it for ADHD or something, then it can help the internal shaking too. Or, it did for me.

 

[Likaloha]

Yeah, I get this too... Never sure what it was..used to think it was low blood sugar, but my hubby is diabetic and he would check my sugar levels when I was like this, but it might have been a little low but not enough to have that symptom... Ritalin does seem to help in the morning, but I can't take it after noon or I can't sleep.. Good luck and hope you can find something that helps!

 

[Merida]

In the last month I have been feeling like my whole body is trembling inside. It is especially noticeable when I am laying down. Has anyone else had this symptom?

Yes, have had this on/ off for many years. I was told by neurosurgeon expert on Tethered spinal cord that when I lie down the spinal column can ‘stretch out’ and put tension on an already tight spinal cord. Sometimes I can actually feel the tension and downward pull at the high neck and occiput. Do you have neck and/or pelvis pain / issues?

 

[dejurgen]

In the last month I have been feeling like my whole body is trembling inside.

I used to have it a lot. Until one morning I had a strong "I do recognize this" feeling. In my case it was plain hypothermia which got worse late night and early morning. But it was around most of the day. Did you ever you check body temperature when this happens? Don't take the head / mouth temperature as the heads tends to be warmer if this hypothermia things happens IMO. Arm pit temperature worked for me.

After checking my morning temperature, it often was 34.5 to 35.5 degrees Centigrade in the morning (I used multiple thermometers to make sure they functioned well). That caused all sort of shaking and trembling up to strong episodes resembling epileptics where I had to push my one hand hard into the other hand palm in order to not cause damage punching things .

Temperature seems to drop with me every time after I overdo it as part of a PEM cascade. That used to be daily as I was in kinda permanent PEM.

Just trying to increase body temperature by hot showers or self massage didn't work. That just caused intense inflammation flares. Just dressing a lot more wasn't that helpful either. That's when I developed this routine of "warming up" before every "exercise" like getting out of bed and standing up, walking to the bathroom, walking to the garden...

The idea was simple: I believed that my body was actively reducing body temperature in order to reduce inflammation. Cold therapy is a common used therapy by professional sporters to reduce inflammation after a game. Trying to increase my body temperature did go against this supposed protective (and unpleasant!) mechanism. But the problem with this idea was that, when you are moving/exercising that your muscles are far too cold to function well. Moving "to vigorously" (that's a relative thing when having ME) with cold muscles is known to easily cause muscle damage... ...and inflammation. That suggested a hard to break vicious circle.

I tried and solve that by "warming up" the muscles before doing very modest activities that are a challenge to us. As the warm up must be lighter then the already light "exercise", I couldn't expect it to warm up my muscles very well. But even a bit of muscle temperature increase plus preparing the muscles for the "exercise" by increasing blood-flow shortly before it did yield results whether the idea behind it was correct or not.

Shaking and trembling decreased significant in the first month and so did pain. After three months my body temperature was still low but no longer problematic and shaking and trembling was near completely gone. It worked better then the anti-convulsant medicines I was prescribed. And it sure didn't had such horrendous list of side effects as that medication did. I think it was that medicine that had as rare side effect "death".

If anyone is helped with this, please reply to it.

 

[Merida]

Thanks, dejurgen, for these interesting and important details. My body temperature was always right on normal ( 98.6 F) until I had the neck and pelvis injury. It almost immediately dropped as low as 96. 5 F , and was commonly 97. 5 F . I think this must be a thyroid issue , which may secondary to a hypothalamus , pituitary issue. These areas can be affected by an upper neck, C1/C2 misalignment which blocks spinal fluid drainage and causes intracranial pressure.

Seems possible that the body temperature fluctuation could also be due to dysautonomia - I have been diagnosed with that.

But the strange quivering I have experienced does not seem temp. related, as it always occurs when I first lie down - some nervous system pressure???

 

[dejurgen]

These areas can be affected by an upper neck, C1/C2 misalignment which blocks spinal fluid drainage and causes intracranial pressure.

A neck blockage can create another cause for low body temperature: reduced blood flow to the brain. The brain consumes a high portion of the total daily caloric intake but has a relative small surface area to cool down and lose heat. As such, I do believe that the blood not only transport nutrients and waste but also heat away from the brain when using it. If blood flow is reduced then heat transport is reduced. In order to achieve sufficient cooling with a lower volumetric flow of blood, the temperature of the blood coming from the body has to be reduced. That may be sufficient to get you close to hypothermia.

In addition, cold is often used by professional sporters to fight inflammation after a game. Both body and brain of ME patients could be served with lower temperatures it this worked out for us.

 

[dejurgen]

But the strange quivering I have experienced does not seem temp. related, as it always occurs when I first lie down

I wouldn't rule out that it is related to low body temperature if you didn't check it. With it I mean a bit lower average body temperature then a few months before. When you first lie down your blood pressure and blood flow both likely drop. That effects both how much energy cells get and much of that energy gets finally converted into waste heat. Less energy means less waste heat or cooling down. The disruption of blood flow also disrupts the transportation of heat. The cooling down won't happen that fast, but I did found my body to anticipate from time to time events to come after I do something. At least it looked that way (that the body learned from repeated events).

Also, shivering can be a means to modify the local blood flow in my opinion. We all did shake with a near empty bottle of shampoo in order to get the last bit of it quicker out of the bottle. I don't say blood and capillaries are the same, but at the very least muscle contraction is a known mechanism to reduce blood pooling. And reducing blood pooling is done by repetitive squeezing of ?veins/arteries? (I always forget what is the name for the returning blood vessels) and especially the returning capillaries. Think about the leg blood pump as an example.

This mechanism of shivering to increase local blood pooling also has a temperature related component: blood at lower then normal temperature becomes thicker and hence flows less good then blood at ideal temperature. So blood flow in the capillaries will stall easier when body temperature is too low.

Would your skin color be more pale then a few months ago (excluding sun tan effect)? Don't take the head skin color, but that of belly, chest, legs or arms.

 

[Merida]

I wouldn't rule out that it is related to low body temperature if you didn't check it. With it I mean a bit lower average body temperature then a few months before. When you first lie down your blood pressure and blood flow both likely drop. That effects both how much energy cells get and much of that energy gets finally converted into waste heat. Less energy means less waste heat or cooling down. The disruption of blood flow also disrupts the transportation of heat. The cooling down won't happen that fast, but I did found my body to anticipate from time to time events to come after I do something. At least it looked that way (that the body learned from repeated events).

Also, shivering can be a means to modify the local blood flow in my opinion. We all did shake with a near empty bottle of shampoo in order to get the last bit of it quicker out of the bottle. I don't say blood and capillaries are the same, but at the very least muscle contraction is a known mechanism to reduce blood pooling. And reducing blood pooling is done by repetitive squeezing of ?veins/arteries? (I always forget what is the name for the returning blood vessels) and especially the returning capillaries. Think about the leg blood pump as an example.

This mechanism of shivering to increase local blood pooling also has a temperature related component: blood at lower then normal temperature becomes thicker and hence flows less good then blood at ideal temperature. So blood flow in the capillaries will stall easier when body temperature is too low.

Would your skin color be more pale then a few months ago (excluding sun tan effect)? Don't take the head skin color, but that of belly, chest, legs or arms.

Yes, I think your ideas are right on and may well apply. I have not taken my temp when first lying down, but my blood pressure can drop 30 or so points - ha ! A great freak out for the doc. But I now have episodes of Orthostatic hypertension which normalize with lying down. Think my autonomic system is trying to keep me from fainting, so it spikes my blood pressure?

My body temp is normally low now - 97.5 F plus or minus. Thyroid tests are normal, but I wonder if it is truly normal.

And I don’t really shiver, it is a trembling. Constant jaw tremor, and intermittent on right side.

But, dejurgen, the source of these problems have become less of a mystery. It is my craniocervical junction that is the problem - misalignment and instability at occiput, C 1, C2. It is influenced by the sacrum/pelvis - and the thoracic spine.

Try reading these : At Karger.com - The Craniocervical Syndrome and MRI by Scott Rosa and J.W.Baird - an abstract.

Also, at Hindawi.com - The Role of the craniocervical junction in craniospinal Hydrodynamics and neurodegenerative conditions by Michael Flanagan.

 

[Zapped]

I got tremors this year after titrating off klonopin for 1 year (after 30 years use) and switching over to Valium for 6 months then stopping too soon. PCP thought it was Parkinson’s (egads) but follow up with neurologist said not so, probably medication related; he concurred with KL withdrawal syndrome. I’m back on Valium and re-titrating slowly.

So, if you’ve used benzodiazepines or other addictive rxs it may be re relative to check benzo.com/uk and the Aston Manual from that site for details re causes, symptoms, cures et al.

BTW, doc said rx use of Inderall (propranolol) can stop the tremors; MD advice needed.

 

[Merida]

I got tremors this year after titrating off klonopin for 1 year (after 30 years use) and switching over to Valium for 6 months then stopping too soon. PCP thought it was Parkinson’s (egads) but follow up with neurologist said not so, probably medication related; he concurred with KL withdrawal syndrome. I’m back on Valium and re-titrating slowly.

So, if you’ve used benzodiazepines or other addictive rxs it may be re relative to check benzo.com/uk and the Aston Manual from that site for details re causes, symptoms, cures et al.

BTW, doc said rx use of Inderall (propranolol) can stop the tremors; MD advice needed.

Thank you, Zapped. Valuable info. No benzodiazepines here. Yes, I think I have a significant cardiovascular thing going on. Trying to find a cardiologist who understands dysautonomia.

 

[Chfrazzle]

You mentioned you have dysautonomia. I also experienced trembling when my dysautonomia (POTS) symptoms started. Felt like I was sitting in an idling vehicle. I was put on a very very low dosage of beta blockers and it stopped my trembling and helped with my other POTS symptoms too. I don't know the science of it but figured I had too much amped up adrenaline as beta blockers will block adrenaline.

 

[Forebearance]

Hi Valerie,
I've experienced a trembling feeling at times in the past. It seems to be associated with cortisol level for me. I can't remember if it was too much or too little. I adjusted my dose of DHEA to fix it, if I recall.

 

[Not dead yet!]

You mentioned you have dysautonomia. I also experienced trembling when my dysautonomia (POTS) symptoms started. Felt like I was sitting in an idling vehicle. I was put on a very very low dosage of beta blockers and it stopped my trembling and helped with my other POTS symptoms too. I don't know the science of it but figured I had too much amped up adrenaline as beta blockers will block adrenaline.

That would explain why I didn't have many POTS symptoms until my campaign to get off beta blockers commenced.

It's spring and I started the yearly antihistamine treatment so I can have a more normal life for the next couple of months. Antihistamines also lower adrenaline, but I've never been able to find much about why that is. People use benadryl to get over adrenaline triggered withdrawal symptoms if they're doing a home detox from a drug. With so many detox places overburdened, it's probably a good thing it works that way. My yearly antihistamine treatments might explain why I was always so puzzled about why people thought opiates were so addictive. I mean, I believed them, but until I knew about the benadryl effect, I had no explanation for why I didn't find it hard to stop ever. I don't like to glorify "clean" -ness but I've been off any opiate for over a year now since I found out about Celiac causing my pain. And friends who are in a position to know tell me that benadryl helps them quit smoking also. Wish there was more science looking into that. I remember what a "nic fit" feels like, and it's very fight or flight.

So, long story short, could also try antihistamines for trembling if it's adrenaline related.

 

[dejurgen]

And I don’t really shiver, it is a trembling.

When I had to push my one hand firmly into the other in order to not injure myself, I'd say it was a lot more trembling then shivering . But that one morning I "felt" how similar in function it was for me as shivering: getting blood flow up and increasing body temperature. Compared to shivering, trembling seems to be able to be better at raising temperature locally where most needed rather then for the entire body.

But, dejurgen, the source of these problems have become less of a mystery. It is my craniocervical junction that is the problem

I do not doubt that. But I strongly believe that problems in neck and craniocervical junction do have a strong impact on blood flow and temperature, not only locally but with fallout spread over the body if it really gets bad. I even believe that part of the symptoms of neck and cranial problems are symptoms of the blood flow and body temperature disruption caused by the neck and cranial problems. Of coarse many other things come into play too.

So, long story short, could also try antihistamines for trembling if it's adrenaline related.

Now adrenaline has a very strong impact on blood flow and blood flow to the head in particular. I also believe that high adrenaline and likewise hormones like nor-adrenaline play a strong role in body temperature regulation in some cases. I think that my nightly sweating is pretty well correlated with increased amounts of these hormones.

I also experienced trembling when my dysautonomia (POTS) symptoms started.

If it would be adrenal type POTS then the above would fit into this picture.

It seems to be associated with cortisol level for me.

Cortisol has some of the properties adrenaline has, but more long term and less violently then adrenaline.

I don't want to "push" these ideas, but just try to make a case for "If you did find a cause, that doesn't exclude that it's compounded with more trouble". This compounding may be part of what makes ME so hard a nut to crack. I do believe that thinking this way has helped me get a better grip on my health more then once.

Yes, I think your ideas are right on and may well apply. I have not taken my temp when first lying down, but my blood pressure can drop 30 or so points - ha ! A great freak out for the doc. But I now have episodes of Orthostatic hypertension which normalize with lying down. Think my autonomic system is trying to keep me from fainting, so it spikes my blood pressure?

Temperature won't rise instantly, just as you can't make a cold bath hot in seconds neither. Heating a large body goes slowly. It's the low average/background temperature I'm talking about.

I have no idea how much 30 points of American units is, but you make it sound a lot .
I wouldn't be surprised if your blood pressure spikes high when standing up AND drops significantly below what is normal when you get lying down. The first part would protect you against fainting. The last part would protect your brain against a "pressure spike" due to changes in effect of gravity that would combine with the probably already high CSF pressure into something quite nasty. As you're obviously quite ill, adjusting may be slow so you get a strong spike getting up and a strong spike getting down.

In order to (try and) reduce this spiking, I very rarely get up in a single go. I slowly transfer from lying down to sitting for half a minute and then slowly stand up. It surely helps me. When lying down I used to do the reverse thing when I was worse. Now I tend to skip that one.

 

[Merida]

When I had to push my one hand firmly into the other in order to not injure myself, I'd say it was a lot more trembling then shivering . But that one morning I "felt" how similar in function it was for me as shivering: getting blood flow up and increasing body temperature. Compared to shivering, trembling seems to be able to be better at raising temperature locally where most needed rather then for the entire body.


I do not doubt that. But I strongly believe that problems in neck and craniocervical junction do have a strong impact on blood flow and temperature, not only locally but with fallout spread over the body if it really gets bad. I even believe that part of the symptoms of neck and cranial problems are symptoms of the blood flow and body temperature disruption caused by the neck and cranial problems. Of coarse many other things come into play too.


Now adrenaline has a very strong impact on blood flow and blood flow to the head in particular. I also believe that high adrenaline and likewise hormones like nor-adrenaline play a strong role in body temperature regulation in some cases. I think that my nightly sweating is pretty well correlated with increased amounts of these hormones.


If it would be adrenal type POTS then the above would fit into this picture.


Cortisol has some of the properties adrenaline has, but more long term and less violently then adrenaline.

I don't want to "push" these ideas, but just try to make a case for "If you did find a cause, that doesn't exclude that it's compounded with more trouble". This compounding may be part of what makes ME so hard a nut to crack. I do believe that thinking this way has helped me get a better grip on my health more then once.



Temperature won't rise instantly, just as you can't make a cold bath hot in seconds neither. Heating a large body goes slowly. It's the low average/background temperature I'm talking about.

I have no idea how much 30 points of American units is, but you make it sound a lot .
I wouldn't be surprised if your blood pressure spikes high when standing up AND drops significantly below what is normal when you get lying down. The first part would protect you against fainting. The last part would protect your brain against a "pressure spike" due to changes in effect of gravity that would combine with the probably already high CSF pressure into something quite nasty. As you're obviously quite ill, adjusting may be slow so you get a strong spike getting up and a strong spike getting down.

In order to (try and) reduce this spiking, I very rarely get up in a single go. I slowly transfer from lying down to sitting for half a minute and then slowly stand up. It surely helps me. When lying down I used to do the reverse thing when I was worse. Now I tend to skip that one.

Thank you for your important comments. Yes my blood pressure spikes way up when I stand up. I do not faint. It is much better in the evening, as if my biological clock is broken. And interesting in the evening my heart rate can fall very low - 50 beats / minute or even less. Better Understanding of cardiovascular and dysfunction of the autonomic system may help a lot if us.

And yes, I have noticed that Benadryl can help in many ways. Except it dries me out and can contribute to dehydration. Thanks everyone for these important comments. Wish we had more influence on the research being done.

 

[dejurgen]

I recently talked to somebody who had severe leg spams from time to time when sleeping. I asked if he happened to have high hart rate at the time of the spams. He answered: until the doctor gave meds to fix my hart rate it went to 200 when having them. Afterwards the hart rate dropped ridiculously low.

I have something similar without the drop to low values afterwards. It seems that (leg) spams often work to get pooled blood into the legs again in circulation. Hart rate then gets very high as that IMO works better to get pooled blood drown to the hart again. With poor blood (returning) supply one would risk creating a devastating vacuum if one had strong and slow hart beats (rather then fast and small beats) to return the pooled the blood back to the hart.

The leg spams/pump works by improving blood returning to the hart. High adrenaline levels get the hart rate to those very high rates. Difference between him and me may be that I seem to produce still plenty enough adrenaline afterwards to keep my hart rate high.

So when trembling resembles limb spasms it can always be helpful to check if either the hart rate spikes very high or he body temperature is very low at the moment of the spasms.

 

[bl218]

I have this, but only during sleep or maybe during sleep phase transitions. I call them "sleep vibrations" I believe it's due to some sort of vagus nerve dysfunction/irritation. I haven't been able to put my finger on what's causing the dysfunction yet although I have some theories:

- Impingement on vagus nerve due to neck issues. I definitely have some neck discomfort and am seeing an osteopath about this. No progress yet. I have not been diagnosed with CFS/ME, but I have read a lot of the recent threads about craniocervical issues and the multisystem problems this can cause.

- Impingement on vagus nerve due to hiatal hernia. When I get these vibrations, it often feels as if they're emanating from my diaphragm. I know that I have a small hiatal hernia.

- A type of "visceral hypersensitivity" which is due to an overly sensitive nervous system that reacts to things such as mild acid reflux. This was the diagnosis of a gastroenterologist who was one of the only traditional doctors that actually recognized this symptom and didn't look at me like I was crazy. He recommended a "neuro modulator" such as amitriptyline or gabapentin.

I take 20mg amitriptyline an 300 mg gabapentin about an hour before bed. These are relatively low doses, but I refuse to go any higher.

There is a very, very long thread on medhelp (that I'm part of) about sleep vibrations that has been active for more than 11 years. You might want to scan through it to see if anything rings true for you. https://www.medhelp.org/posts/Sleep-Disorders/tremors-during-sleep/show/476754

 

[ponypanic]

I have this trembling internally symptom in the upper chest, worse with exertion and comes with shortness of breath. It’s not palpitations as I’ve had those and still get those occasionally! Been searching for similarities in my undiagnosed illness and ME, I’m sure it’s ME but I’m only 3 months into this illness and I believe in the U.K. anyway a diagnosis of ME can only be made after 6months!