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pmac
Regular Member


Date Joined May 2005
Total Posts : 221
   Posted 3/27/2008 5:00 PM (GMT -6)   
Hello there,
 
I really don't post a lot, but I do read a lot of what you guys are discussing, and just want everyone to know how much I appreciate and respect this group!  It can bring a lot of comfort knowing that you aren't alone...there is a lot of good information shared here.
 
Anyway, I have UC, but in the last 5 months I have developed these swollen purple painful toes...found out just over a month ago that they are Chilblains.  The Derm. I saw didn't make a fuss over them, but wanted me to have my Cryoglobulin tested.  Didn't really worry since she didn't seem concerned, but about 3 weeks later I found our that the test had come back positive.  Not knowing what that meant, I of course just had to Google it...many different reasons why it can be that way, but they all seem pretty scary!  I was sent for ANA bloodwork, saw her on Tuesday, and now that has also come back positive! sad    She has now taken a biopsy of my worst toe, and I'll see her in a couple of weeks for the results.  She made it seem like the best outcome of the biopsy would be Lupus...don't even want to think about what the worst outcome could be!  I'm trying to keep myself busy, and try not to worry...but it's hard, and I don't want to scare my husband or anyone else in my family by talking too much about it...that's why I'm here...need to get some fear out!!! tongue   My question is: has anyone here had Chilblains or Lupus as well as IBD?  I guess that a messed up immune system can cause many things to go wrong?  This is a lot to take in and think about!
 
Thanks for listening!!
 
Paula :-)
 

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 3/27/2008 5:04 PM (GMT -6)   
Paula - so sorry for the stress you are going through. One autoimmune disorder can lead to others. I've never heard of the one you're talking about, but will google it.

I would suggest asking on the Lupus forum as well. They're also a great group!

Vent away!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa, Canasa, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Squattie
Veteran Member


Date Joined Jul 2005
Total Posts : 669
   Posted 3/27/2008 5:33 PM (GMT -6)   
AAAAARRRRGGGGGHHHHH!!! CHILBLAINS!! Yep....I got it. It started right after I almost frostbit my toes on my honeymoon (don't ask) over 30 years ago.

Now every winter if my toes get cold they will swell up, itch, blister and burn. It's annoying as hell. If I remember to wear my UGG boots in the winter I'm not bothered by it. If I wear my sneakers or anything else...I'm in trouble.

And if my fingers get really cold I may be bothered on one or two of them. I never had anything like it before I froze my toes. Now it's an annual thing if I don't keep the feet warm.

I'm very annoyed when it happens to flare, but I've never had a toe fall off or anything. For me it's just a nuisance.
.....Squattie


pmac
Regular Member


Date Joined May 2005
Total Posts : 221
   Posted 3/28/2008 9:43 AM (GMT -6)   

Thanks Dakotagirl and Squattie!  This isn't fun since in the beginning I was under the impression that the Chilblains were happening because my toes were cold and that was it!  Now I have to try and calm my mind until April 8th when I get the biopsy results confused

Squattie, did they not send you for bloodwork of any sort when you presented with these?  They didn't discuss anything else that might have to do with them?

 

Thanks again

 


Squattie
Veteran Member


Date Joined Jul 2005
Total Posts : 669
   Posted 3/28/2008 10:43 AM (GMT -6)   
pmac,

In all honesty...I've never mentioned it to any of my doctors. I just figured it's one of those things that I just kind of live with. I've had it forever and it doesn't seem to make me feel sick or anything. I probably don't even want to know. I've always figured it's just a consequence of nearly getting frostbite.

I'm as proactive with my health as I can be. Meds freak me out and I try to avoid them. Right now I'm doing well...but always knocking on wood.
.....Squattie

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