Quick vent before I get back to studying (exam tomorrow!) - my hands have flared almost every night for about a week (I've never had it so consistent before). It's always when I'm studying at night and trying to take notes, and it's an instant distraction. It's driving me crazy!

Yesterday my Raynaud's was more of an issue and I could not do anything to warm up my feet. I have compression gloves for my hands because my fingers get so cold. But then I have to be careful because I can swing into the hot and burning easily.

Aaahhh! It's so annoying!

Ok, thanks! Back to work.

I always found my EM and Raynaud's really bad at exam time. My EM flares are mostly at night anyway and I think that is a common feature. The link between stress and EM flares is well enough known that my consultant was scheduling my Iloprost treatments to have most effect at exam time. You're not imagining this and it is not self-inflicted. I hope your exam went well and your EM has calmed down.

Thanks starsmurf! My exam went pretty well. It was a rough school week overall, but I made it! :)

It's been very strange lately how often this happens now, and it's almost universally at night. What makes it even more frustrating is that my hands and feet are doing 2 completely different things. My hands are hot, and red and swollen, and my feet are ice cold, to the point where it actually is quite painful. And that's not uncommon for me in the colder months, at least with my feet. I try special thermal socks, warm boots and shoes, I even had to put a space heater under my desk in an attempt to relieve the pain from the cold, and even that doesn't always work. I get very very uncomfortable at school, and I don't really have any options for warming them. I find that to be the most debilitating in the winter, because I can't handle cold. Both my hands and feet are affected, but my feet are the worst. I avoid doing anything outside in the winter because no matter what I do, I can't keep my toes warm, and they "burn" when put them close together because they're so cold. Want to know the ironic thing? The rheumatologist I saw told me to keep my core warm and wear lots of layers all the time, which does absolutely nothing for my hand an feet, though keeps me moderately comfortable in a cold room. But as soon as it warms up, I switch from cold intolerance to heat intolerance, and I get very anxious from being overheated! It's like a losing battle: hot vs cold, burning cold v burning hot, and in the end, nothing actually makes my feet feel better anyways....

What's getting strange now is how differently my hands act. During the day, my hands are generally very cold. I even have some special arthritis compression gloves to help warm my fingers (which I need to pay attention to because it can trigger a hot flare if I leave them on too long). But at night, man do they get bad! It's like clockwork these days. And honestly, I feel like it came out of nowhere! It used to happen from time to time, and I'd take pictures to help track, so if I needed to, I could show my doctor (since, undoubtedly, I will be in a completely "normal" state when I see him). And it was odd, and an annoyance when it happened, but it wasn't a huge deal. My body is weird, I present with things differently than one would expect, and so I just kind of shrugged my shoulders and thought, "eh, what else is new?" But within the last 2 weeks or so ... every (or almost every) night, I get a flare. And it just kind of weighs me down now. There's nothing I can do, really. The other night it was bad enough for me to grab some veggies out of the freezer to hold onto, which helped temporarily, but when I put them away it came back. I'll walk out of my office to wherever my husband is, flip up my palms, and just say "I'm so sick of this". It makes writing more difficult, it's a major distraction when I'm trying to study. And while it may not be the worse case, I can't help but wonder "why me?" I seriously am a walking medical puzzle (and one day hope to be on mystery diagnosis because of it, haha!) but man, I just wish I could be "normal" for a while. It's funny, I have a really good relationship with my primary doctor (I've seen him a lot more in the past year than most people see their docs in 10 years!) and he can read me like a book. He can tell, before it even happens, that I'm about to start crying because I'm so frustrated. I haven't seen him for this really, since my last major issue was mysterious abdominal pain for almost 3 yrs that no one could explain; turned out to be a hernia, that is unusual in women, to which my doc still just kind of chuckles when he sees me because he's never seen it in someone like me, and for a relatively "healthy" 24 y/o, it was the last thing he, or anyone else, would have expected. I'm grateful that, although it took almost 3 yrs to figure out, the pain was "fixable" and hopefully I won't have issues with it again.

huh, that's strange. It cut off the end of my previous post! Oh well, I was just saying that unlike my abdominal pain, there won't be a cure for this. And it makes me frustrated that I may experience this the rest of my life. I try not to let these things bother me, and I think I cope pretty well. Unless someone's seen it in action, or lives with me, most people wouldn't know how miserable I can feel throughout the day. I keep that stuff to myself, which is fine. But sometimes I wish someone I knew could relate to me. Pain is a frustrating symptom - you can't see it. The only proof you have is the person's word, and since I've always had some kind of issue, I tend not to say much anymore because people thought I was making it up, or making it sound worse for attention. I would never make something up like this, and I wouldn't wish it on anyone. But the only proof I have is my word, and the visual when it does flare. Sometimes it just really sucks. I'm glad I found this place, and I look forward to talking to people who know what it feels like, can relate to my frustrations and misery, and yet be supportive and understanding. Hopefully, some day, there will be something out there to help us all feel better, even if it can't cure it.