I have another wierd thing that happens and I wonder if anyone else has this, too. My right hand sometimes gets really cold (compared to my left hand). I've had my DH feel them to make sure its not my imagination and he could tell a big difference. It is random, but I have noticed it many times when I am typing (like now) on the computer and other times when I'm not really even doing anything.
I have Raynaud's but that is different. This is strictly just a temperature thing there is no loss in sensation with it.
Does anyone else have these types of circulation issues? Is it something I should address with my PCP or a NL? Thanks!
I was DX'd with Raynauds and I have this as well., but my Chiari NS told me it is not Raynauds, it is Raynauds Phenomenon , so it is a little different and it is related to Ehlers-Danlos which he also Dx'd me with....
But I know what u mean, if I am holding the TV remote in my right had and flipping channels my right had gets so cold it hurts...and it also happens while typing too....not sure y, they r right next to each other, I end up sitting on my hand,...lol...
Thanks, Selma. I usually sit on mine too and then I worry that I'm going to squash it and cut off the circulation even more :D we can't win!
How do they test for EDS? I am so reluctant to go and start testing again...but I have a gut feeling that I may have it as well. I'm not double jointed but I seem to have alot of other things that are in line with EDS.
Is there any treatment for it? I guess I'll start doing more research. Thanks
We do have an EDS group here on MedHelp along with some helpful info and links to info on that page....http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc
U can look up the Beighton Score for joint hypermobilty....and EDS.....this will give u some indications.
I did not think I was hyper mobile either, but a PT can move my joints pretty far so it looks like my ROM is great ! But I can not move those joints like that myself,..,..
I always knew I was easy to bruise and slow to heal, had no idea it was something with sooooooooo much more attached to it...
To drink a cold drink I have to wrap the glass or can with napkins to insulate so I can hold it or my hand hurts....my DD is so use to this she always hands me a drink wrapped up...lol...
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