Do you recognise these symptoms?

[Askil]

I had a diagnosis of fibromyalgia 4 yrs ago and it is well managed through exercise and Pilates and Yoga.
last yr, after a lovely day & whilst watching TV, I suddenly started to feel awfully chilly from deep inside spreading all over outwards. I started violently shivering (teeth chattering) which Paracetamol couldn't touch. The central heating was on.

I took to bed as by now i was aching all over, flu like aching not the usual fibro ache which i can distinguish. Whilst i was shivering in bed and i kept having this uncontrollable urge to stretch my legs and arms.
DH made me a cup of tea which i managed to sip. Gradually the shivering subsided and i fell asleep. When i woke up in the night, it felt like the 'fever' had broken. I felt clammy & light-headed but all the aching had stopped. I felt like I had just recovered from a terrible fever.

The cause was unknown.

2 Months later another attack happened in exactly the same fashion. It came on suddenly for no reason. I had a very hot cup of tea which calmed the shaking and went to bed. In the morning i felt warm and clammy & light headed as if recovering from a bad fever.

I visited the GP who said they cant do anything as I was not ill when I visited the GP. I was asked to call when I'm actually ill, which I can't as it always happens out of hrs and you can't get through to the GP anyway.

It's happened 3 more times after this with all the same symptoms. During the last attack I had I thought i was going to tear a muscle in my back from the continued stretching of my arms and legs. I was blue-lighted to hospital where i was kept in for the night for observation, but eventually, everything came back normal.

I do not have restless leg syndrome.
It always happens at night, it's never been during the day and mysteriously starts to reduce after a hot drink. After sleep, the fever seems to break and the temperature comes down.
I have not been eating cold things or drinking cold drinks.
I'm not on any medication.
When I've googled, Sepsis comes up but it all seems a bit inconsistent with how the attacks start and go away.

I'm starting to get really anxious and hoping someone might recognise some of these symptoms. Thanks.

There are some autoimmune/auto inflammatory diseases that can cause muscle aches and fevers. Might be worth having a look at those.

Could well just be a virus that caused a fever,it broke and then you felt better. Not uncommon.

That's unlikely given the number of times its happened.

Sorry op no idea what this could be but ask your oh to film it next time

Sounds like rigors

Here is a link explaining it:

patient.info/childrens-health/rigors-leaflet

@Thingsthatgo I've looked into these and nothing seems to line up, considering the way it comes on suddenly and then disappears.

@MrsPelligrinoPetrichor Unlikely as its happened 5 times and each time lasted about 5-6hrs.

@QueenSmartypants You are quite right. The fact I've suddenly started having these attacks in the last yr and the suddenness and disappearance of it would suggest its unlikely to be a virus. Filming is certainly a good idea.

@ApolloandDaphne I will look into this.

I really appreciate all your comments. Please keep them coming if anyone has any others.

Sorry, I was reading on a packed train and missed it had happened quite so many times.

No advice really OP,just wanted to say I hope you get to the bottom of it and feel better soon 💐

Thank you @WavingThroughYoWindow .

@MrsPelligrinoPetrichor. Quite understandable, thanks for taking time to comment.

I've looked into 'rigors' and can see some similarities with there but it seems to happen to mainly children (50s!). It doesn't explain the urge to keep stretching during an attack or why it keeps coming back, 3 times last yr, twice this yr. It seems like the gap between episodes is also getting shorter.

Not to alarm you, but could it be a type of seizure?

I had a very similar experience in the recovery room following surgery last year, and the involuntary stretching lasted hours. Heat was apparently steaming off my body and I was soaked through, but no temperature on the ear thermometer.

Various people came to have a look and debate about whether it was a febrile seizure or something else. In the end, the consultant's verdict was "something metabolic"

In your case, was that 'something metabolic', a seizure?
I honestly don't know. Im awake throughout the episode and I can move about though very stiff & confused, bit dizzy so usually just stay in bed. Drinking something hot seems to help it though so not sure really.

I just don't know how on earth one sees the GP about this because like they said last time I went...'well you're well now, so there's nothing to see'.

Just noticed you mentioned the involuntary stretching too. Will do a bit of research on seizures.

Could it be a seizure?

Ask for a referral to a neurologist op.

Could it be low blood sugar? I've been getting something similar sporadically- always at night and I shiver for a few hours, really feeling like I'm coming down with something but am fine in the morning. I have a history of low blood sugar and I wonder if that's what causing it. I also wondered if it was a perimenopausal symptom (the list of symptoms seems endless).

Yes could be:

https://www.nhs.uk/conditions/low-blood-sugar-hypoglycaemia/

I have got the shivering ..like l am going into shock and need to get into bed put on the electric blanket and curl up. My extremities..hands especially feel like ice. It happens sometimes when l have overdone things . My temperature drops to about 34. Next morning l feel exhausted. I do suffer from low blood pressure. Last time l went to my GP next morning and l actually had a kidney infection. He said some people react to infection by having a low temperature instead of the usual high.
I don't get the stretching though.

I had this with panic attacks that hit me for absolutely no reason. All related to the start of the menopause.

Have you actually taken your temperature when shaking? And when it stops/the next morning?

Thank you for your continued comments. I had another episode last night I put on a thick dressing gown on top of a jumper then wrapped a blanket round myself to help with the shivering. Clearly in this current weather that doesn't make any sense. Like I, said it's getting more and more frequent. This morning I'm hale and hearty all symptoms have disappeared, almost as if I dreamt it.

Very good point about the thermometer, I bought a digital thermometer from Amazon (£20) and apart from when it arrived and I tested it, it has never worked!

I'm going to buy a new one today. I don't know if they sell blood sugar monitors?? if I can get one I'll get that as well.

Next time it happens, eat or drink something sugary and see if that helps the symptoms. Although if you think it might be low blood sugar, good luck trying to get a doctor to take you seriously!

The things that come to mind for me are restless leg syndrome (just because you haven't had it before doesn't mean it can't start), low blood sugar and what could well be pulling it all together, hormones? Are you peri-menopausal? Or have you made any changes to hormonal contraception?

I've similar episodes, I refer to it as shock as well

I too have fibromyalgia and in the last 18 months I’ve had a few of these shivering attacks. I am hovering on the border between diabetic/borderline diabetic. I have suffered for years with low blood pressure too. I know I have not got to get too cold and feel like once cold gets to my stomach I can get an attack. People with fibromyalgia are very sensitive to temperatures too. I have to go to bed when it happens and like you have piles on clothes on and have a hot water bottle too. Am just going through menopause also. Have had lots of blood tests thyroid, coeliac etc and nothing shows up. I feel your frustration.

Could it be a cold flush? I’ve had a couple - one after my flu jab and another a few weeks later. Both in bed & I had to pile ion the blankets. Yours does sound more full on though.