National Human Genome Research Institute: Researchers discover a new auto inflammatory disease called CRIA syndrome

[Woolie]

@Woolie: Do you mind if I ask if you had periodic fevers?

Yes, I did, @Michelle, at least in the first few years. But the rises in temperature were quite small. I would feel like I was on fire, and take my temperature, and it would be up by half a degree, maximum of one degree. But later in the illness, when I occasionally measured it, it rarely exceeded normal. Even when I felt super hot.

So similar to you, in that the fever part evolved and flattened out over the years.

I've always felt too hot, never too cold. Except for rare occasions when I felt very, very ill, and then I would shivver for a few hours and it would pass. But paradoxically, shivvering is often a sign of a high fever. So episodes of feeling extremely cold, accompanied by shivvering, might indicate fever too.

At any rate, hadn't noticed you mentioning anything about periodic fevers. Wondered if that was essential for auto-inflammatory conditions.

Yes, it is. My specialist was satisfied with those historically slightly raised temperatures, when considered in the light of the bloodwork. But I think I was very lucky to get a specialist who thought so flexibly about that.

 

[Louie41]

I think I was very lucky to get a specialist who thought so flexibly about that.

I'd say you were very lucky to happen upon doctors who would actually listen to you and believe you! When my autoimmune disease was diagnosed, I had the good fortune to come across 2 doctors who took me seriously, who believed me, and who knew enough to recognize my disease. This was after my HMO had put me in the hospital for "tests," but never bothered with talking to me, and told me there was nothing wrong with me.

Don't get me started!

But I'm so happy for you, @Woolie!

 

[Invisible Woman]

I'm delighted for you @Woolie!

I find it very interesting - like you I had episodes where it felt to me like I was burning hot without any significant temperature change, but mine alternated with episodes of being freezing cold.

My immediate family members and I all have autoimmune disorders. I was diagnosed with ME, ME/CFS as that's the best fit and told that in all likelihood my health problems are down to my immune system.