I read somewhere that people with ssc feel the cold/complain about feeling cold more than those without this condition, and because of the ssc, rather than if you have raynaurd's alone. I am one of those who needs the room temperature to be 19 degrees or above. Embarrassingly, at work l put the heating to 25.
What temperature is most comfortable for you?
Secondly, can anyone explain the physiology behind the feeling cold issue?
Thanks for reading.
totally understand ! My lips and feet go blue if temp indoors under 19 degrees ! I don’t understand the theory behind it I’m afraid .. I’m guessing poor circulation but don’t know why ? X
Hey, my lips turn blue too! So if it is the extremeties which are affected, how come it affects the lips as well? Your face isn't an extremity. 🤔
good point blue feather !! I’m sure someone will chip in and explain . TMI but I never sweat either do you ?
No, Tiggy, not really, unless you count night sweats. I got them for about 3 months every night before being diagnosed. I can sweat if l go into a sauna.
blue lips are very common especially in people with circulation, heart and lung diseases of which SSc is definitely included, it’s called Cyanosis and due to reduced oxygen levels in the peripheral circulation. Your ears, lips and nose are actually extremities along with the fingers and toes.
21 in my house and its still not really warm enough
So what would your ideal temperature be?
I have to keep my house at 23 degrees constant otherwise I suffer, I also have triple glazing so no drafts .... having kept a constant temperature for such a long time now has made a huge difference in controling my Raynauds and the frequency and severity of ulcers
yes I do but also have hypothyroidism - which significantly lowers my body temperature to normal of 35. I like the ambient room temperature to be at least 22 - which is impossible in an old house during a cost of living crisis so I have a heated furry throw and electric blanket on 1-2 all the time when I’m in my bed. We have recently installed secondary glazing which really helps but I still wake to Raynaud’s or the opposite extreme, Erythromelalgia, if warm and cozy. I’d rather suffer Erythromelalgia than Raynaud’s though personally.
I don't have Scleroderma but I do have Raynaud's and other conditions , including Chronic Dysautonomia (Autonomic Nervous System Dysfunction) which effect my circulation and temperature control. I certainly react to the cold , and the heat , far quicker than a generally healthy person. My family could time the sunset on the beach by my instant reaction to the change in temperature by a few degrees. Fingers and toes going instantly numb and white as the sun sinks behind the horizon. In winter , my reactions can change from hour to hour. If the weather hits beyond 25 degrees I have terrible throbbing and burning. Worst is coping with a hot day and trying to get cool but then getting a Raynaud's reaction in my fingers and toes whilst still overheating everywhere else!
In my case , I'm sure the combination of Ehlers Danlos and its effect on the elasticity of my circulation system and the Dysautonomia effecting my temperature regulation and heart rate is the cause of my Raynaud's , or at least how severe it is.
definitely! Comfortable Temperature is 23+
I find all of this really interesting, and will be sure to fire off 'it is a scleroderma thing' should l be asked to turn down the heating at work.I am also wondering why help isn't available for heating bills for those who can't get PIP. Could anyone enlighten me?
So, when you have EM and Reynaud's, what do you do when...
Please sign petition. Winter fuel allowance for people affected by the cold. Thank you.
Bit of a strange one - let's talk sweating!
Impact on your life by taking immunosuppressants? 
