Something New

Even though it's only been a few days since I got the RA diagnosis I've learned something new. RA doesn't like to travel alone.

A few months ago I began noticing that my right hand especially had become EXTREMELY sensitive to cold. By that I mean if I touched something cold it felt like my hand was on fire and all the skin was melting off. This happened a little in my left hand too, but my right hand was much, much worse. Yes, I told the rheumatologist about it. No, she didn't comment on it.

Then about a week ago the middle 3 toes on my right foot felt freezing cold. But when I touched them they felt normal. Very odd and that's never happened before. Fast forward to yesterday and I woke up to this:

The middle toe on my right foot was really swollen and blue/purple.

And no, I didn't "do" anything that would have caused this.

I took this picture so you can see the difference and messaged my rheumatologist. She had an odd vacation response in the message center saying she was "out till 2020" so I sent it to my PCP too. I'm guessing she just stinks at technology, but I still haven't heard back from her.

My PCP, who is GREAT at getting back to me, got back to me by the end of the day. Here's what he had to say. "I am unsure of the cause of your symptoms but this could be Raynaud's which could be related to Rheumatoid disease. Did you hear back from (rheumatologist name.) So I looked up Raynaud's Syndrome and sure enough, the symptoms seemed to fit. 

I read that one way to test it is to hold something cold for a few seconds only. If your skin turns white, you likely have it. It also goes along with autoimmune diseases like RA, Lupus and some others. 

Curious scientist that I am I got up this morning and took a cold cup from the freezer and held it for a few seconds. Not much change on my left hand. I tried it again with my right. The difference was immediate. The parts of my hand that came in contact with the cup turned white. This was after holding it for about 3 seconds (I'm not a glutton and it was painful.) 

Same lighting, same location after 3 seconds of holding something cold.

They haven't turned blue, but still feel cold about an hour after doing that. So it looks like it could be Raynaud's.

Unlike RA it doesn't look like Raynaud's is very serious. You need to avoid touching cold things with your hands, wear socks, stay warm. If I you get a lesion or sore on your hands or feet you need to have it seen to. That's about it! 

I also found this NY Times Q&A on Raynaud's to be particularly helpful.

Yes it is!

My husband and I made some jokes about how I went 1 day without a diagnosis and "be careful what you wish for." I reminded him that it wasn't really a diagnosis, but more of a "Huh! It could be this..." which isn't the same thing. But truth be told I was a little shocked. 

I've had many symptoms for so long that I know them inside and out. I know what helps and what makes them worse. I can tell you about them in detail. But this was all so new and sudden that it really took me by surprise. It also left me with some new questions. Biggest of them is why is everything happening to my right side?!?!?!

From what I've seen and read asymmetry isn't all that common. Most people with RA have symmetrical symptoms. Is that fact that mine are more like 80%/20% unique? Or does it mean I have something else going on? Time will tell I guess.