What Causes Us To Shake?

[Rene S.]

I'm sorry if I'm posting something that has already been discussed, but does anyone know why we shake? I tremble both inside and out. I think the outside trembling is the worst. I can even see when I look in the mirror that my eyes tremble is that makes sense. It's as if I can't get warm but sometimes I'm not really cold. My legs shake and even my teeth chatter at times. It seems the only time I'm not shaking is when I wake up soaking wet and hot! I also find that if I'm exhausted just from doing small things, the trembling is worse. I'm trying to learn as much as I can about this "illness" and it's so frustrating. Today is Saturday. Most people would be out enjoying their lives, but I'm too tired to drive anywhere nor do I feel up to it.

When it was just the fibro/cfs I was much more social, now I feel so lousy that it's just easier staying home.

I'm sorry for whining, I seem to be doing alot of that lately. I feel bad for all of us. And if one more person says to me "just get over it", I'm going to scream.

Also, I'm changing subjects - but I've lost way too much weight and when I do eat, I get full easily on a few bites and it feels like I ate an 8 course meal and then I'm constantly burping. Sorry for the rudeness! Just seems like every day things get worse.

I pray that something shows up in the blood work that my family dr ordered, thanks to you informed people letting me know what they should be testing for.

Today is the first day of spring and to me it feels like the bleakness of winter.

Thank you all for listening.

Rene

[all4family]

Hi Renee,

I am so sorry you are having such a hard time. Do you mean shaking like you do when you are cold? Now I am no doctor but that may be due to how our ANS doesn't control our temperature very well. You know like maybe your body thinks it is freezing even when it is not. I get shaking too. I get chills shaking, but I also get like a tired shaking. When I am tired I can't use my muscles or I shake. Like if I lift my arm. Or once when I tried running with a kite (the last time I ran!) my legs went all over like jell-o. My husband who was watching me said "don't run anymore! You will hurt yourself!" I also get an innner vibrating. Kind of feels like electricity is going through me, and amping up all my muscles, but instead of making them stronger it just makes them weak like jell-o!

Your not whining! We are all here to share, that is how we get understanding of this disease! But if you want to call it whining, whine away! I think we need blinders like the horses wear so they can only see right in front of them, and big cotton balls for our ears just to survive with this disease! I can't tell you how many people have told me to "JUST GET OVER IT!" Just get yourself busy and into something so you don't think about it they say! OK. Well I will start with this then I will puke, then I will do this, and I will faint! And really I will feel like @#%$ the whole time, so really I WILL be thinking about it! Really if you could just get over it you would have! Sorry for others that say such thoughtless things!

Sorry, but I don't know exactly your case, have you had any kinds of tests to see if you have GI dysmotility, or any other issues there? I couldn't stop losing weight at one point, and had a doctor scare the life out of me when he said if you keep losing weight at this rate you will die! Well I solved that problem on my own by the most weird method. I am able to eat IF I am laying down, and I usually have to stay down for about an hour afterwords! Now the last doctor I seen said that all my problems were due to too much weight!!!!

I hope you get some answers from the blood tests ordered. And I hope you get a nice spring day soon!

healing hugs

Suzy

[Rene S.]

Hi Renee,

I am so sorry you are having such a hard time. Do you mean shaking like you do when you are cold? Now I am no doctor but that may be due to how our ANS doesn't control our temperature very well. You know like maybe your body thinks it is freezing even when it is not. I get shaking too. I get chills shaking, but I also get like a tired shaking. When I am tired I can't use my muscles or I shake. Like if I lift my arm. Or once when I tried running with a kite (the last time I ran!) my legs went all over like jell-o. My husband who was watching me said "don't run anymore! You will hurt yourself!" I also get an innner vibrating. Kind of feels like electricity is going through me, and amping up all my muscles, but instead of making them stronger it just makes them weak like jell-o!

Your not whining! We are all here to share, that is how we get understanding of this disease! But if you want to call it whining, whine away! I think we need blinders like the horses wear so they can only see right in front of them, and big cotton balls for our ears just to survive with this disease! I can't tell you how many people have told me to "JUST GET OVER IT!" Just get yourself busy and into something so you don't think about it they say! OK. Well I will start with this then I will puke, then I will do this, and I will faint! And really I will feel like @#%$ the whole time, so really I WILL be thinking about it! Really if you could just get over it you would have! Sorry for others that say such thoughtless things!

Sorry, but I don't know exactly your case, have you had any kinds of tests to see if you have GI dysmotility, or any other issues there? I couldn't stop losing weight at one point, and had a doctor scare the life out of me when he said if you keep losing weight at this rate you will die! Well I solved that problem on my own by the most weird method. I am able to eat IF I am laying down, and I usually have to stay down for about an hour afterwords! Now the last doctor I seen said that all my problems were due to too much weight!!!!

I hope you get some answers from the blood tests ordered. And I hope you get a nice spring day soon!

healing hugs

Suzy

Hi Suzy,

You are so very kind. Yes, sometimes it's shaking like I am cold, which always seems to be the case. perhaps because I don't have enough weight on me? My normal weight was 103 and now I'm 90 at 5' 1/2". I too have had a dr. scare the $(#*%* out of me. He was my endocrinologist who told me that he wouldn't see me again if I didn't see an oncologist because he was convinced I had cancer because of the weight loss! The other, my gastro said it was dangerous to lose weight that rapidly and ordered a bunch of tests including a poo sample. Getting back to the shaking, I know for a fact that my normal body temp is like 96.3. Whenever they take it at the drs' offices they keep telling me that I'm not placing the thermometer in the right spot under my tongue. Hello, I'm 49, I think I know how to use a thermometer! Also, like you, I get the shakes when I'm tired or do something a wee bit strenuous. Gone are the gym days, the 20 mins walks! I get the inner vibration feeling, usually at nighttime.

So, you solved your weight loss problem by eating laying down???? I may be hesitant to do that since I have gerd to boot. Do you mean totally flat, or semi propped up?

My gastro said right now I'm too weak to go for a colonoscopy or an upper GI. He told me that the next time he sees me (I was supposed to go back last month) he wanted me at least 95 lbs. Well, it didn't happen, so I changed the appt. I just get so full so fast. I'm trying desperately to throw something in my mouth every hour or so.

People are insensitive. I had one of my closest friends email me saying that there were people in the super market with "real" physical handicaps and they still managed to food shop for themselves (she was picking stuff up for me). Then she accused me of being anorexic, aggraphobic and anxiety ridden. I was so hurt I cried the whole day.

It's not fun looking like a bag of bones. Why would I do this on purpose? Even my cardio asked if I was anorexic! Jerk.

Again, thank you for letting me rant. I do so appreciate your feedback.

Hugs back!

Rene

[janiedelite]

Rene, I'm so sorry you're having such a hard time! Can you do a gastric/small bowel/colon motility study? That's how they diagnosed my slow small bowel. Many people with POTS have slow stomachs as well. I can usually push through the nausea and fullness, though, and I've managed to maintain my weight. I also have high-grade reflux. (sleeping with the head of my mattress elevated helps for nighttime). But most meals I have to eat either reclined or laying down. It just seems like it's too much work for my body to be upright and digest food at the same time. And I know it's the worst thing for GERD, but laying down for a bit after the meal helps me to digest, too.

Also, since my delayed emptying is related to sympathetic over-activation (from orthostatic stress) I find that it is better if I stay hydrated, wear compression diligently, rest, salt, etc.

Can you take in liquids? When I'm having hard days, I try to drink Carnation instant breakfast because it has calories, vitamins, and is easier to digest. If you're lactose intolerant, I think there are liquid supplements that are soy-based also?

You poor thing. Sounds like your dysautonomia is really out of control, hence the bad shakes too!

Please let us know how you're doing, Janie

[Ernie]

Hi,

Mine is caused by high adrenaline.

[all4family]

Hi Rene,

That is so interesting that you say your temperature is always low. Mine has gotten as low as 96.,but usually it is around 97.0. I'm 37, and I also know how to hold a thermometer! We can't both be wrong huh?

Yes I solved the problem by eating laying on my stomach. (although restaraunts are out of the question) When I first noticed it helped was after I had eaten, and began my throwing up, I was super exhaused, and laid on my stomach, and it quit. I guess you could say I have gerd, but several doctors have seen me throw up this way, and they all call it vomiting. It just happens a little at a time and is anything I put in including water. I lay on my stomach, and prop up on my arms and eat. And I have to admitt it also got better after I stopped taking some medications that were making me real sick, but I still have to lay down, or I will throw up and get full to fast and burp and all that stuff.

I didn't succeed with my upper GI. I tried it without medication. I was diagnosed with dysmotility still, I think mainly based on a blood test in conjunction with a special CT that showed I have a dialated esophogus, and probably my symptoms. They still want me to do it, but I won't take the drugs!

That is just terrible what your friend said. Do you have other people that help you that aren't so mean? I have my husband, but have just recently learned that if I take a scooter in the store I can shop on my own! It feels pretty good to. I really don't know why people would think we would want this for ourselves! I hope you are able to not talk to her as much. It is bad enough to hurt physically, but when you add on emotional hurts like that it is awful!

I had a doctor (well I think it was a psychologist) tell me I was anorexic! I told her I was always overweight before this. She told me it's not about a weight, but about a relationship with food! uuuggghhh! I said my relationship is I eat food, then I vomit it how good can it be?! (then she said bulemia!) Whatever! I later seen her at a church, and when I tried to tell her how I solved the problem she told me to pay attention to the sermon! (even though she had started the conversation, and said what she wanted to!!!!)

I hope you get to feeling better soon, and I hope you get answers! You can at least always come here for validation of how you feel! Rant away!

Hugs

Suzy

[Rene S.]

Rene, I'm so sorry you're having such a hard time! Can you do a gastric/small bowel/colon motility study? That's how they diagnosed my slow small bowel. Many people with POTS have slow stomachs as well. I can usually push through the nausea and fullness, though, and I've managed to maintain my weight. I also have high-grade reflux. (sleeping with the head of my mattress elevated helps for nighttime). But most meals I have to eat either reclined or laying down. It just seems like it's too much work for my body to be upright and digest food at the same time. And I know it's the worst thing for GERD, but laying down for a bit after the meal helps me to digest, too.

Also, since my delayed emptying is related to sympathetic over-activation (from orthostatic stress) I find that it is better if I stay hydrated, wear compression diligently, rest, salt, etc.

Can you take in liquids? When I'm having hard days, I try to drink Carnation instant breakfast because it has calories, vitamins, and is easier to digest. If you're lactose intolerant, I think there are liquid supplements that are soy-based also?

You poor thing. Sounds like your dysautonomia is really out of control, hence the bad shakes too!

Please let us know how you're doing, Janie

Hi Janie,

My GI dr doesn't want to do any studies until I put some weight on. He thinks I'm too fragile! Grr. He's done some blood work (which I should have results from this week and even was testing my feces. Before I came to the boards, I had no idea about what the dysautonomia entails. Wow! I do try and either drink an Ensure (which I believe is soy based) but I do have the carnation instant breakfast as well. Sometimes I force it down with 1/2 of a sandwich. I just never thought I'd ever have a problem eating! And the getting full feeling is awful. It's as if I just sat down and ate my thanksgiving meal with a second helping of dessert! LOL.

The weird thing was, yesterday, I almost felt "normal" for a few hours and was out and I guess I'm paying the toll today. My energy level is non existant. Just want to sleep. Trying to keep myself moving even if it's a 5 min walk around the house. I know that sounds strange but I've lost so much muscle tone.

I'm trying to keep up my fluids, but I'm the type of person if they are cold I don't want to drink. I could make some herbal tea. And I will look into the compression stockings.

As for the GERD I try to sleep up high on 3 pillows and stay on my left side.

I wouldn't wish this on anyone, the exception being my ex husband's 35 year old fiancee! LOL.

Thanks Janie for some great tips. I so appreciate it.

Rene

[Rene S.]

Hi,

Mine is caused by high adrenaline.

Hi Ernie,

I'm sure mine is up there as well! I believe it was in one of the blood tests that my GP ordered this week.

Hope you are doing better! Please let me in on your secret!

Rene

[ajw4790]

Hi,

I looked up internal tremors some. It looks like they can be caused by may things, including being a form of Essential Tremor. Other causes include low blood sugar, hormone imbalances, thyroid problems etc.

Don't know if that helps any?

[lthomas521]

My doctor said that my tremor as well as my pallor was probably a sign of low blood volume. Sure enough, my blood volume was very low.

[ramakentesh]

It has many causes and they depend on the cause of your POTS:

1.Sympathetic overactivity as your body tries to maintain blood flow to the heart and brain

2. excessive norepinephrine and epinephrine

3. hypothermia due to decreased bioavailability of nitric oxide

[ramakentesh]

Did your doctor also tell you that if you have been found to have low blood volume then chances are you have Low flow POTS which is the result of low bioavailability of neuronal nitric oxide which may soon be correctable through the use of either angiotensin II blockade or the use of Pycnogenol (French pine bark extract).

Infact, if I had a test result indicating low blood volume Id be wrapped as it may prove to be the easiest form of POTS to treat.

Check out Dr Julian Stewart's work for more details. Note that low blood volume was found only in patients with the Low flow form of pots and not normal or high flow pots.

[ana_22]

where can we see that article? ans what do you mean by it willl be treatable 'soon'? thanks

[iheartcats]

Did your doctor also tell you that if you have been found to have low blood volume then chances are you have Low flow POTS which is the result of low bioavailability of neuronal nitric oxide which may soon be correctable through the use of either angiotensin II blockade or the use of Pycnogenol (French pine bark extract).

Infact, if I had a test result indicating low blood volume Id be wrapped as it may prove to be the easiest form of POTS to treat.

Check out Dr Julian Stewart's work for more details. Note that low blood volume was found only in patients with the Low flow form of pots and not normal or high flow pots.

Silly question and sorry for butting in a bit - but I do get that shakey feeling too and my temp runs 97 a lot - how do you test for blood volume? I want my doctor to do this so I have to go armed and prepared with what I want done so I can push for it!

[ramakentesh]

The shaky feeling isnt automatically related to the low blood volume experienced by some POTS patients. Its most likely from excessive symapathetic activity.

I believe that Julian Stewart's work is readily searchable on google. I believe his website is www.synacope.com or something along those lines.

[Sunfish]

rene-

just wondering how you're doing in terms of managing to eat/ drink as much as you can? and wondering if you've had a gastric emptying test? it's not invasive in any way so there's no reason for your doctor to want to hold off on that one due to your being weak, underweight, etc. and at the risk of sounding harsh, how does your doc think you're going to improve to the point of being stronger & better-able to handle testing if the problem that's keeping you from eating well enough isn't being addressed? i'm not trying to bother YOU; it's just that i'm a bit annoyed with your doctor perhaps ...i've seen too many people be left by the wayside by GI docs who aren't proactive enough. but anyway.....

let me/ us know how you're managing if/ when you have a chance. GI-wise i have severe/ total gastroparesis & chronic intestinal pseudo-obstruction - amongst other things - so can relate entirely to not being able to eat or drink no matter how much you might theoretically want to otherwise. that said, i did notice you mentioning tea. since you're having trouble with weight loss (& thus with getting enough calories in) it would be a much better idea to make sure that any & all beverages you drink are full of calories (rather than almost calorie-free as tea is); since you prefer things that are hot things such as hot chocolate, tea or coffee with sugar and full strength milk or cream, or any other drinks that are more full of calories would be great. of course i know that it is sometimes harder to tolerate as much when the drink is richer/ heavier so it's then a bit of a balancing act; try for at least some calories but not too many to keep you from managing as much as you otherwise would.

hope you're hanging in okay....

melissa

[Rene S.]

rene-

just wondering how you're doing in terms of managing to eat/ drink as much as you can? and wondering if you've had a gastric emptying test? it's not invasive in any way so there's no reason for your doctor to want to hold off on that one due to your being weak, underweight, etc. and at the risk of sounding harsh, how does your doc think you're going to improve to the point of being stronger & better-able to handle testing if the problem that's keeping you from eating well enough isn't being addressed? i'm not trying to bother YOU; it's just that i'm a bit annoyed with your doctor perhaps ...i've seen too many people be left by the wayside by GI docs who aren't proactive enough. but anyway.....

let me/ us know how you're managing if/ when you have a chance. GI-wise i have severe/ total gastroparesis & chronic intestinal pseudo-obstruction - amongst other things - so can relate entirely to not being able to eat or drink no matter how much you might theoretically want to otherwise. that said, i did notice you mentioning tea. since you're having trouble with weight loss (& thus with getting enough calories in) it would be a much better idea to make sure that any & all beverages you drink are full of calories (rather than almost calorie-free as tea is); since you prefer things that are hot things such as hot chocolate, tea or coffee with sugar and full strength milk or cream, or any other drinks that are more full of calories would be great. of course i know that it is sometimes harder to tolerate as much when the drink is richer/ heavier so it's then a bit of a balancing act; try for at least some calories but not too many to keep you from managing as much as you otherwise would.

hope you're hanging in okay....

melissa

Hi Melissa,

Thank you so much for getting in touch. Eating is still a problem but I've been drinking these shakes from the health food store made with pea protein. Spiru-tein I think they are called.

My gastro guy is sweet and I have faith in him. He's doing some studies now (feces)etc, but never mentioned the gastric emptying test. I will however, mention it. He wants me after I see the endo on wed to have atest done where I swallow a camera capsule to look inside my stomach.

I have been drinking ensure, carnation instant breakfasts and yougurt. Eating some grains whenI get the chance and trying to put something in my mouth every hour. Although today, after eating a large meal last night (1/2 tuna sandwich, soup, cookies) I've been up since 3 with the most horrid runs. I did also have alot to eat during the day and didn't feel great. I've gone to the bathroom probably 20 times. Might be from the tuna salad. I'm drinking gatorade and eating pretzels. I'm so weak and it's causing heart palps and chest pains. I don't know what's going on.

I'm sorry about your condition and it was so nice to be concerned for me! I will definitely call the GI tomorrow.

Thanks again, Melissa.

Rene