systemic sclerosis

[sessull]

Does anyone suffer from terrible heat in veins and arteries(skin) yet raynaud's at the same time? But can also be shaking with cold inside - if that makes sense! I have Sjogren's and Systemic sclerosis but all the Doctors ignore the intolerable symptom of hot and cold I suffer

[Oleander1]

Morning Sessull,I have this to a lesser degree. If you go on to the SRUK website and type Associated Conditions into the search bar it will come up with several Conditions, one of which is called Erythromelalgia which sounds similar to what you are describing. Hope this helps.

[sessull in reply to Oleander1]

Thank you so much.That is such a relief to know it is a condition and not me going mad!I have had to have air con fitted in my house. I hope you aren't suffering too much yourself

[OldTed60]

yes i have confirmed Raynaud’s and Erythromelalgia as part of sjogrens and systemic sclerosis overlap. It’s exactly as you describe - worst of both although for me Raynaud’s is far more dominating during the daytimes but Erythromelalgia is extremely painful in my limbs during the night as weather and humidity changes. I haven’t discovered any treatment that helps Erythromelagia apart from the Raynaud’s treatments I’m now on, Losartan and Iloprost, seem to help the pain somewhat. Worst for me is all the chopping and changing in humidity and between seasons when one day hot, next chilly. Feel like body is a barometer.

[sessull in reply to OldTed60]

Thank you very much for all that information,so appreciated.You are suffering exactly like me.As you say it is the constant change in temperature that is the nightmare - like the body's thermostat just doesn't react.Take care of yourself

[Lupiknits]

Another one with Erythromelalgia and Raynaud’s as part of systemic sclerosis. The burning is in my feet and up to my knees. It seems you have Erythromelalgia. For me, the burning sensation is 24/7 and worse at night. Rheumy diagnosed it. No treatment apparently available.

[sessull in reply to Lupiknits]

Yes the nights are far worse and you can't get away from the pain can you.It seems no on has come across it here.Thank you for your reply