Are you sure it's Raynaud's and not autonomic dysfunction?

I was going to ask the same question as GM,, Raynaud's is a different dynamic than the coldness that comes with EDS. Raynaud's is actually more of an autonomic reaction in which the blood vessels constrict while my understanding is that the coldness of EDS is because of pooling and sluggish circulation because of poor veinous return of blood. Then again, you could have both, just know they are different.

While we are on this topic, do any of you find that your 'normal' temperature is usually lower than 98.6 ?

I had to look up autonomic dysfunction - I haven't ever heard of that before. That sounds a lot more serious than Raynauds and now Rayauds is sounding pretty darn good ..

And yes, my temperature is often lower than 98.6, usually a bit above 97 (I just took it and it was 97.4)

Thanks for the feedback - I appreciate being able to ask these questions without everyone thinking I am making this up. Also I am seeing a new rheumatologist so thanks for giving me a better education in advance of my discussions with him.

Ask the rheumatologist if s/he is familiar with Hypermobility Syndrome and Ehlers-Danlos syndrome, and if s/he has ever recognized it before. Most haven't.

ahh good you looked it up. they can both be bad in their own way, both result in poor circulation.

With Raynaud's I think the general temp is normal, like 98's, with lupus the temp is sometimes a little high. And I'm thinking with EDS many of us will say it's low. Mine tends to be 97ish, so when I'm sick and they look for fever and I don't have a high fever, except rarely, they think I'm not really sick, and I tell them that I don't run fevers easily.

My temperature does seem to run slightly low.

dinet.org is the place to go for information about autonomic dysfunction.
http://forums.dinet.org/index.php?/topic/18389-low-body-temperature/
http://www.mitoaction.org/blog/dysautonomia-body-temperature