Sticky Blood-Hughes Syndrome Support
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First of all I know that ladies glow lol we talked about vit D yesterday and a lot of us had the same problem I have horrible sweats that is so bad it drips off my head and face I have had this for many years now @ home I am in a thin top when eveyone else is wearing thick jumpers I have no temprature control it's terrible I went out today with no coat and I still overheated anyone else the same x

8 Replies

Hi hon

yes definately i cold when weathers warm and pour with sweat (glow), when everyone else is freezing cold, except for permanently frozen hands and feet (Raynauds).

Aps lots to answer for me thinks!!!

Take care gentle hugs love sheena xxxxxxxx :-) :-) :-)


well as a bloke not sure i can glow lol but yep do get sweats and tempreture is screwed up

and like jess said i get problems from raynauds



lol you made me laugh I am so glad this happens to others with Hughes I thought I was going mad my face and hands are Ice cold yet I am soaking and very hot thanks guys for your help now I can say it's my illness x


lol i am glad you may want to check with your doc about raynaurds for the hold hands


I'm cold all the time even with layers and the central heating on yet my face feels like its burning but i don't sweat many a time I'm convinced I'm running a fever yet when my temperature is taken its normal


My Dr's were puzzled by my sweats, they were quite convinced that my TB (that I had many years ago) had returned. I kept a temp chart, and every afternoon my temp went up a whole degree. But the sweats can be at any time, I am wearing summer clothes. The thing is the Dr's that I am seeing are learning about Hughes and don't understand all the weird side effects. I have a red rash all over my chest, not the "corned beef" rash of Hughes, just like I have been in the sun too long, nobody knows what that is about!! The better Dr's are educated about this strange syndrome the better for the patients, I hope they are learning something from my case, as it has taken 50 years to get a diagnosis.


I don't know where to begin as far a Dr goes. For YEARS now, it can be 60 degrees and I am sitting there sweating like a man that is in the midst of a football game. This happens inside and out and is so humiliating!!! But at the same time, my body is covered in chills. I literally feeling like I am burning alive inside and do not know what to do!!! It has gotten to the point that I refuse to go to my grand kids ballgames, weddings, .....well, anywhere that I have to be in public because people do not understand at all@ I didn't evn do this for the first 20 years after a hysterectomy. Can ANYONE give me ANY ideas on what to bring up to the Doctor? I try to talk to them about it and they just say menapause but I lives with this to know the difference. Trust me, I know when I am having a regular hot flash and then it NOT a hot flash times a 1,000!!! HELP ME!!! PLEAAAASE!!!



You have now answered a 3 year old question.

If you have the symptoms of APS or are diagnosed Hughes Syndrome (APS) I think you should put a new question on this site and you will have better and several more answers.

Before I started warfarin (I then had very high bloodpressures and several clots) I sometimes had a feeling of "treading into ice" for some minutes. I have heard someone on this site speaking of "burning inside" also. Sorry that I can not help you.

Best wishes from Kerstin in Stockholm


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