Is my severe cold intolerance typical of others?

[Clareb67]

Hello everyone.  I’m new here, I’m 52, I live in the uk and I have a long history of moderate lupus/UCTD and Raynauds.  In August this year, I had  an episode of my body temperature falling very low during a family barbecue.  My body made no attempt at shivering but instead went into the most agonising spasm which lasted hours.  I struggled to breathe during all of this as my chest was rigid and my heart rate was extreme fast.  I felt ill enough to feel that I needed a doctor but managed to recover unaided although it took several hours and then days afterwards until I felt normal again.  This happened twice more during a fortnight then nothing since. . . . Until last weekend when, despite keeping active and walking the dog whilst well wrapped up, the cold took over and the same thing happened again.  I noticed that, during the latter part of the thawing out process (hours later),  I was simultaneously shivering with cold whilst also having hot flashes.  Once again, my heart was going beserk.  I’ve had suggestions of Dysautonomia from friends but I don’t get heat intolerance.  This isn’t simple chilling, it’s causing widespread systemic problems which are not dissimilar to hypothermia as suggested by rheumatology.  I’m pretty scared, can anyone relate or advise?

many thanks, Clare

[Guest ScottS]

I've had similar experiences, particularly "simultaneously shivering with cold whilst also having hot flashes". They are unnerving, to say the least. A medical grade heating pad on my chest or belly generally helps limit both the duration and intensity of the episodes. I only experience heat issues when higher temps are accompanied by higher (on average greater than 50%) humidity levels. Curiously, I quite enjoy and do not react badly at all to higher temps when the relative humidity is 40% or lower. 

Btw, I have been diagnosed with (and am highly symptomatic of) both POTS and a second, still mysterious form of Dysautonomia (that I shall not elaborate on here as how it affects me is not related to what you've experienced).

[Pistol]

@Clareb67 - I have hyperadrenergic POTS, Raynaud's and Prinz-metal angina, all caused by excessive vasoconstriction.  When I am in a bad flare I start to shiver terribly, my teeth chatter, I start to yawn ( an attempt of the body to increase oxygen intake ) and my hands and feet become very cold. I also often have severe chest pain caused by spasms of the coronary vessels. I am not sure if this is what you are experiencing but in my case it is from dysautonomia. 

[Guest ScottS]

6 minutes ago, Pistol said:

I start to yawn ( an attempt of the body to increase oxygen intake ) and my hands and feet become very cold

Yes to the yawning and yes again to the cold feet and hands. The yawning is weird. I also get quite tired/sleepy after.

[Guest KiminOrlando]

Did you take your temperature at the time?

[Clareb67]

I can’t work out how to reply to you individually but thank you for your replies.  It seems that Dysautonomia is a definite possible explanation for this horrible process that I keep experiencing.  From what I have gleaned, there is little in the way of treatment - it’s awareness and timely self-management.  I worry mostly about my heart because there’s no doubt it struggles during these events and hypothermia is reputed to  put it in a very delicate state.  I keep meaning to take my temperature but am generally too ill to be able to think coherently - I literally crawl into a hot bath (I know, probably not a good idea) then in to bed.  I’m trialling fluoxetine for the Raynauds and I’d hoped it would work for these OTT cold episodes but it appears not.

Given the NHS constraints and poor private medicine in this country, is there anything to be gained by pushing for a diagnosis?  I’m u dear rheumatology (a dept that is nationally splitting at the seams), respiratory for my chronic small airways disease and ENT for laryngospasm.

 

many thanks, Clare.x

[Pistol]

33 minutes ago, Clareb67 said:

Given the NHS constraints and poor private medicine in this country, is there anything to be gained by pushing for a diagnosis?  I’m u dear rheumatology (a dept that is nationally splitting at the seams), respiratory for my chronic small airways disease and ENT for laryngospasm.

From what many of us here have experienced - yes, it is definitely worth pushing for a diagnosis if you suspect dysautonomia. But for most of us this is a long, frustrating and sometimes infuriating process and you should definitely see a specialist in the field. On our physicians listing ( you can find it under the physicians tab ) has specialists in the UK listed, maybe there is someone you would feel comfortable seeing. 

[Clareb67]

3 hours ago, Pistol said:

From what many of us here have experienced - yes, it is definitely worth pushing for a diagnosis if you suspect dysautonomia. But for most of us this is a long, frustrating and sometimes infuriating process and you should definitely see a specialist in the field. On our physicians listing ( you can find it under the physicians tab ) has specialists in the UK listed, maybe there is someone you would feel comfortable seeing. 

Thank you.  Everything is a battle here.  I have jotted down the details of the few that are in the UK and will look into them.  Many health authorities deny out of area referrals which is why we scratch around for private consultants.  Ive been privately on 2 occasions and its not good at all.

spasms of your coronary vessels must be terrifying.  I dont know if thats what I’m getting but it sounds similar.  Very best wishes. C x