Clareb67

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

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

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