So glad to have joined this group as I've had so many of my questions answered already.
Has anyone found a chill pillow helpful. I've not read any good reviews on these online but just wondering if anyone has any positive experiences.
Also wondering if this condition gets worse over time. I know it isn't going away but would like to hear that this is as bad as it gets!
Hello. I love my Chillow. It works so well and doesn’t require freezing or getting it wet. I highly recommend it!
As far as this getting worse it is different for everyone. Some Get Better , Some Worse And Some Stay The same. Only time will tell. I hope you are one of the ones that get better or at least no worse.
Alina said it perfectly.
From my experience I would say that EM evolves for me all the time but not necessarily for better or worse. In part that could be due to the weather as in the UK, where I am, the weather is so changeable and temperature plays such a big part in EM. EM for me this year has been different from last year as the flares have shifted much more up to my face, which oddly is where they were when it started for me four plus years ago. My first two years were horrendous but thanks to medication are much more manageable now. I tried to plough on regardless at first but now have learnt to refuse invitations that are going to make life too tough and I suppose that could be called acceptance of my limitations. We suddenly had to give up going to our favourite Indian restaurant in the evening too, particularly sad since it is just at the end of our road but the resulting flares were not worth it. Why that should happen from one week to the next I can’t imagine. So acceptance and management have helped keep it bearable this year though I am dreading the Winter.
Well said Nel.
Mine morphs over time sometimes better and sometimes worse. It shifts in where I flare too. I get it over most of my body but usually only a few parts at a time. A few weeks or months and a new body part starts flaring and the old one stops.
When it first got bad for me about 4 years ago it was all over my body at the same time. It was terrible! Now through medication and largely lifestyle change It is better in general and not all over.
I could have written that. The first few months were utter misery and real panic and then Winter came along and if it hadn’t been for the grandchildren I could have booked myself into the local mental hospital. It was just that awful… I wish someone could explain it all to me.
Me too Nel. It sure would be nice to know what is actually going on. During my first few months when I didn't know it was temperature related and I burned all over 24/7 I just wanted to be admitted to a hospital and have them put me in a comma till they could figure out how to stop the pain.