Full-Body Muscle Spasms

[Blog Reader]

Does anyone else have full-body spasms where you're conscious and perhaps still have a little control, maybe as a symptom related to PEM or adrenaline? Do you have any information on what happens during these (for example, with your blood pressure)? How do you explain them to doctors who haven't seen them before?

 

[Shannon]

I have full body uncontrollable body spasms. It's called "rigors" or "hypnic jerks" which is that uncontrollable body jerk you sometimes feel when you are falling asleep, except it doesn't stop. I once had it for 36 hours straight. When I finally made it to my doctor's office he said he'd even seen worse! I couldn't imagine it. I cannot control the jerking, it involves my full body, even my jaw! It's random, too, and will continue until I medicate.

I was prescribed a benzodiazepine called lorazepam (highly addictive), which is often prescribed for panic attacks. Which I had a history of many years ago, but no incidences in over a decade now. But the rigors, well they are most definitely stress related in my case. I push trying to stay awake when my body says I need to sleep, or if I cannot get sleep for 24+ hours it can bring on the rigors. If I'm overly upset or stressed AND tired I will certainly get rigors.

I just had an episode 2 days ago. Unfortunately, for me, the lorazepam makes me feel like a zombie for 24 hours and I have to sleep it off - even though this drug is supposed to only stay in the body 12 hours. That's just how it happens for me. Lorazepam definitely works, and works quickly, to stop the rigors. But I also have to be mindful of my stress level and how much sleep my body wants (oh no, it's not really a choice for me anymore lol).

I don't always feel cold when I get rigors. Where the description indicates you do. Nor do I have/get a fever like the description says. People with fibromyalgia sometimes experience the inability to regulate their body temperature and I often wonder if that causes the rigors or is in part responsible. Though I have heard that Type 2 diabetics can also experience this kind of symptom. I am T2 diabetic.

I have severe fibromyalgia, costochondritis, osteoarthritis, and other co-morbidities. For me, the rigors are stress related. Stress is always the trigger. It may or may not be the same for you. Look up "rigors" and "hypnic jerks" to see if either describes your situation. Good luck!

 

[Blog Reader]

I have full body uncontrollable body spasms. It's called "rigors" or "hypnic jerks" which is that uncontrollable body jerk you sometimes feel when you are falling asleep, except it doesn't stop. I once had it for 36 hours straight. When I finally made it to my doctor's office he said he'd even seen worse! I couldn't imagine it. I cannot control the jerking, it involves my full body, even my jaw! It's random, too, and will continue until I medicate.

I was prescribed a benzodiazepine called lorazepam (highly addictive), which is often prescribed for panic attacks. Which I had a history of many years ago, but no incidences in over a decade now. But the rigors, well they are most definitely stress related in my case. I push trying to stay awake when my body says I need to sleep, or if I cannot get sleep for 24+ hours it can bring on the rigors. If I'm overly upset or stressed AND tired I will certainly get rigors.

I just had an episode 2 days ago. Unfortunately, for me, the lorazepam makes me feel like a zombie for 24 hours and I have to sleep it off - even though this drug is supposed to only stay in the body 12 hours. That's just how it happens for me. Lorazepam definitely works, and works quickly, to stop the rigors. But I also have to be mindful of my stress level and how much sleep my body wants (oh no, it's not really a choice for me anymore lol).

I don't always feel cold when I get rigors. Where the description indicates you do. Nor do I have/get a fever like the description says. People with fibromyalgia sometimes experience the inability to regulate their body temperature and I often wonder if that causes the rigors or is in part responsible. Though I have heard that Type 2 diabetics can also experience this kind of symptom. I am T2 diabetic.

I have severe fibromyalgia, costochondritis, osteoarthritis, and other co-morbidities. For me, the rigors are stress related. Stress is always the trigger. It may or may not be the same for you. Look up "rigors" and "hypnic jerks" to see if either describes your situation. Good luck!

Thanks! I can push through these spasms enough to go rest or to hold something if I have to. They can be so heavy that I stop breathing for a little bit, though, as muscles all over my body tense up together for a little bit. Then they'll relax for a bit, and I can breathe until the next one hits, perhaps seconds later. Apparently, my face can become flushed during the tension part; I wasn't aware of that until a doctor commented on it recently.

 

[Shannon]

it's scary not having a diagnosis, I can relate. I sincerely hope you find out what is causing it and/or what you can do or what medicine you can take to prevent it or at least its severity. Good luck

 

[Blog Reader]

it's scary not having a diagnosis, I can relate. I sincerely hope you find out what is causing it and/or what you can do or what medicine you can take to prevent it or at least its severity. Good luck

Thank you!

 

[Blog Reader]

I was just reading about endocrine-related things and came across a page that mentioned muscle spasms related to adrenal insufficiency (https://www.nadf.us/secondary-adrenal-insufficiency.html). It states that secondary adrenal insufficiency doesn't produce muscle spasms as often as primary, "since aldosterone is usually present." I'm trying to connect the dots, but could this have anything to do with the spasms?

I know I have an endocrine problem of some sort and that before starting fludrocortisone, I'd had a sudden onset of nausea, tachycardia upon standing, and inability to retain water (or Gatorade--nothing seemed to work). I was also very weak, sometimes feeling as though even talking took a heavy amount of breath.

When I tried to stop fludrocortisone years later (over a number of months, and only ever halfway), I became nauseated, lost my appetite, and found many things to be overstimulating (examples include light, loud sound, the smell of an orange peel, and the color yellow), among other symptoms. One doctor thought my adrenals were suppressed due to fludrocortisone use and asked me to take extra whenever I was under stress; but she had started working with me once I'd been on fludrocortisone for over a year and a half, so she had not seen my condition before I started it.

Could the spasms be related to an endocrine problem? I don't have enough information on this yet to sound believable to any doctor since that previous one (whom I'm unable to see now). Does anyone else have information on this type of problem?

 

[Baz493]

Assuming that Shannon is correct in suggesting you experience rigors you should be aware that they can be evidence of something very serious going on in your body. https://patient.info/childrens-health/rigors-leaflet U I was experiencing them for a several years because my physicians refused to believe me regarding toxic exposures having induced chemical peritonitis; the substance burning holes in my gastrointestinal tract. The rigors were always like an extreme form of uncontrollable shivering for me, occurring whenever I became even slightly cold.

 

[Not dead yet!]

I have full body uncontrollable body spasms. It's called "rigors" or "hypnic jerks" which is that uncontrollable body jerk you sometimes feel when you are falling asleep, except it doesn't stop. I once had it for 36 hours straight. When I finally made it to my doctor's office he said he'd even seen worse! I couldn't imagine it. I cannot control the jerking, it involves my full body, even my jaw! It's random, too, and will continue until I medicate.

I was prescribed a benzodiazepine called lorazepam (highly addictive), which is often prescribed for panic attacks. Which I had a history of many years ago, but no incidences in over a decade now. But the rigors, well they are most definitely stress related in my case. I push trying to stay awake when my body says I need to sleep, or if I cannot get sleep for 24+ hours it can bring on the rigors. If I'm overly upset or stressed AND tired I will certainly get rigors.

I just had an episode 2 days ago. Unfortunately, for me, the lorazepam makes me feel like a zombie for 24 hours and I have to sleep it off - even though this drug is supposed to only stay in the body 12 hours. That's just how it happens for me. Lorazepam definitely works, and works quickly, to stop the rigors. But I also have to be mindful of my stress level and how much sleep my body wants (oh no, it's not really a choice for me anymore lol).

I don't always feel cold when I get rigors. Where the description indicates you do. Nor do I have/get a fever like the description says. People with fibromyalgia sometimes experience the inability to regulate their body temperature and I often wonder if that causes the rigors or is in part responsible. Though I have heard that Type 2 diabetics can also experience this kind of symptom. I am T2 diabetic.

I have severe fibromyalgia, costochondritis, osteoarthritis, and other co-morbidities. For me, the rigors are stress related. Stress is always the trigger. It may or may not be the same for you. Look up "rigors" and "hypnic jerks" to see if either describes your situation. Good luck!

This describes what I have too. Either a benzo or lately a regular muscle relaxer will stop it for me. But I tend to just go to sleep with a muscle relaxer. The benzo allows me to stay awake and continue my life... such as it is. I don't understand the Puritanical nonsense of the addiction terrorists. If you need a drug to function it's a dependence, not an addiction. An addiction is taking a drug for no functional purpose just pleasure. smh

Example: I'm dependent on a blood pressure med to prevent high heart rate which leads to migraine being triggered. If I stop I'll be in withdrawal and in pain. Yet nobody's telling me I"m "addicted" to it.