uncontrollable shivering.

[Shell]

I haven't had the unctrollable shivering problem for a while, but it's back. I'm not cold. It's a warm sunny day and I'm shivering away, teeth chattering. It's utterly weird.
I do get the hot and then cold - shawl on, shawl off thing but the shivering seems to go on regardless.
Is it POTs, ME or what?
I don't think it's FM.
Anyone else get this?
It used to happen when I got cold and then no matter how warm I got later the shivering wouldn't stop. But this time it has just started without any particular reason - unless it's because I am burned out from a stupidly busy week...
dunno.

 

[ratdog]

Have you ever had your cortisol level checked? This sounds like an adrenal problem.

 

[Old Salt]

The shivering only happens to me at night, when I'm asleep at 2 or 4 am after a nightmare wakens me. This is very important: it only and always occurs after I have eaten wheat or something with citric acid, [a preservative] during the daytime. Never fails.
I'm sure it is a result of Leaky Gut Syndrome. Not everyone reacts to the same substances but wheat is common. Obviously, this is a CNS reaction to a perceived pathogen or toxin. It was a Naturopath, who discovered what the delayed reactive substances were! The greatest medical minds were baffled and I imagine, are still.
Also, my heart rate goes wild, along with the shivering episode, that lasts about an hour or so. This is dangerous, as a stroke or heart attack can ensue, due to fast erratic heart rhythm. I rely on the lubricity of fish oil to mitigate that danger.

 

[Tally]

This happened to me once. Shaking was like I was extremly cold but I didn't feel cold at all (and I usually do have cold hands and feet but not that particular time), I was shaking, my jaw was clattering, I couldn't stand while it was happening. I have ME, I don't have POTS.

 

[Seven7]

For me I think is the OI. Usually announces me of a crash. I try to heat up the core (even if I am not cold). Drink a lot and lay down.

 

[hurtingallthetimet]

not sure if what you are talking about but i get chills and shiver...but also get really hot off and on...

maybe you are getting flu? or some other bug? be careful and take your temperture often
hope you feel better

 

[Shell]

ratdog. I've had hardly any tests outside the NHS basics. Unless I fight I doubt that anyone will do extra tests. So many of my tests over the years have vanished.

Old Salt - thanks for the warning about food. My 7yr old is on a gluten free diet as the only thing that stopped a revolving door with the Children's Hospital.
As my oldest has type 1 diabetes which is linked to ceoliacs, I have wondered if I should just go gluten free with my daughter. It certainly seems time to experiment.

Tally - it's weird isn't it?

@Inester I think you may have hit the nail. I felt utterly awful by the afternoon and crashed big time. Still struggling today but at least the shivering comes and goes, rather than going on and on.
@hurtingallthetime - I do get chills and uncontrollable shivering when I'm cold, or bizarrely when I'm too hot; but this didn't seem related to my ridiculous body temp roller coaster.

A friend of mine who is much sicker than I am told me yesterday she gets this too - she has dysautonomia with her ME, so my money's on the OI.Getting terrible chest pains with it too so that figures.

 

[Wonko]

Yes, not for a few years but it used to happen quite a bit, almost always at night. Nothing to do with temperature, I wasnt cold (or hot), just really voilent uncontrollable shivering for half an hour to a couple of hours.

 

[clive powney]

This was my worst symptom of all - it always preceded a crash. I always thought it was a result of overdoing it the day before because it nearly always seems to happen in the middle of the night around 4-5 am and would wake me up. Initially I would feel a bit of a stomach ache and shortness of breath - my heart rate would go up and my hands and feet would feel cold and clammy - then the shivering would start - teeth chattering, legs arm and body shaking - this would last around 1/2 hour - I would then need to go for a number 2 and then feel extreme tiredness and desperately need to sleep. When I woke up I would feel likeI had been hit by a bus - arms legs aching as if I had run a marathon - foggy head etc etc and it would take up to a week to recover. This went away for a couple of years after 7 years of suffering but has returned in the last 3 or 4 months but not quite so bad. It has happened to me 2 or 3 times in the daytime (early days) but only when I was overdoing something much too much. I hated this - it was the worst symptom - it felt like you were going to die. When I had my very worst episode I told the wife that I was on my way out and kissed the kids and her as though it was my last moment before I was rushed to A&E. They initially thought I had menningitis but after several test couldnt find anything at all.
Is there any process that runs in the body around dawn that if it isnt working properly could cause the body to panic a bit and wake you up - maybe this is why it seems to happen around dawn????

 

[Calathea]

Nighttime stuff - any chance it's a blood sugar problem? How late do you eat in the evening, do you snack before bed, and do you get similar problems if you skip meals during the day?

 

[Shell]

clive powney - you live near me Yes the shivering is awful. But for me it tends to happen in the day time.
Although just before the big seizures in July I was apparently shivering in the night quite a bit according to dh. I woke up a couple of times shivering but put it down to "this weird illness". Then a couple of days later I started the first seizures.
Hope this isn't a precursor to more aleady! Still got the carpet burn from the last ones!

 

[Hanna]

I am sorry that you are feeling those horrible episodes Shell. I had some too, perhaps 6-7 in the ame month a few years ago. They happened mostly in the afternoon or in the evening (once it was at nigh), never in the morning. I thought it was an additionnal weird symptom of ME. It was somewhat aleviated by low dose prednisone (5 mg was enough to stop the thing within 15-20 mn), so i tend to think it was adrenal related. Hope you'll feel better soon.

 

[taniaaust1]

For me.. when I get crazy shivering.. it means Im crashing badly (so something to do with the ME rather then the POTS..thou autonomic stuff may also be coming into it some). Fortunately I havent had that symptom for quite a while.

In my case thou I actually do feel very cold with it and will feel cold even if it is a very very hot day eg a scorching 40-41 Celicus day (i actually cant feel the heat at all when Im in this state) and Im in jumpers, gloves and scarfs. (the shivering in my case is like one does when one is coming down with a terrible flu and has a fever but for me, this shivering can happen without fever.. my body temp may actually drop low during this).

Take care if its a very hot day and you arent feeling the heat and shivering.. a friend found me once laying out on the lawn on a scorcher day in full sun one time, wearing jumpers cause I just couldnt feel the heat at all. I wasnt aware it was hot!!!. The doctor said I had to take a lot of care that I dont end up with heatstroke on such occassions and that this can be dangerous.

 

[Old Salt]

This was my worst symptom of all - it always preceded a crash. I always thought it was a result of overdoing it the day before because it nearly always seems to happen in the middle of the night around 4-5 am and would wake me up. Initially I would feel a bit of a stomach ache and shortness of breath - my heart rate would go up and my hands and feet would feel cold and clammy - then the shivering would start - teeth chattering, legs arm and body shaking - this would last around 1/2 hour - I would then need to go for a number 2 and then feel extreme tiredness and desperately need to sleep. When I woke up I would feel likeI had been hit by a bus - arms legs aching as if I had run a marathon - foggy head etc etc and it would take up to a week to recover. This went away for a couple of years after 7 years of suffering but has returned in the last 3 or 4 months but not quite so bad. It has happened to me 2 or 3 times in the daytime (early days) but only when I was overdoing something much too much. I hated this - it was the worst symptom - it felt like you were going to die. When I had my very worst episode I told the wife that I was on my way out and kissed the kids and her as though it was my last moment before I was rushed to A&E. They initially thought I had menningitis but after several test couldnt find anything at all.
Is there any process that runs in the body around dawn that if it isnt working properly could cause the body to panic a bit and wake you up - maybe this is why it seems to happen around dawn????

 

[Old Salt]

Sounds like delayed food reaction, as I posted earlier. Try no wheat products. Check labels for a few days.

 

[clive powney]

Like I say though I didnt have any problems for at least a couple of years and didn't change my diet at all - they have come back a little recently but less strong - still haven't changed my diet

 

[Mary Poppins]

I get this, always at night time. Never been sure what its genesis is, just waited for it to pass. It usually occurs around 3am-5am. Afterwards, I am completely exhausted. Moreso.

 

[liquid sky]

I have something similar, but the shivering feels more like a neurological symptom. It mostly happens when I try to lie down to sleep. I am actually afraid to try to sleep at times. (Embarrassing) It always precedes a severe flare of all symptoms, but especially severe pain, fatigue and cognitive dysfunction. I also feel like I could easily die and have said my goodbyes a few times.

I have wondered if these attacks are sub-clinical seizure activity as I always have severe head and spinal pain. I can sometimes get rid of these shivers by forcing myself to get up and stay up for a few hours. The problem is that I am so weak that I cannot usually get myself upright. Also have severe noise/light/vibration sensitivity.

I do not have any answers, but if anyone has any idea what these attacks are or how to stop/prevent them, please share.