At the Water's Edge

Showing posts with label Raynaud's. Show all posts

I had my latest rheumatology appointment last week. Overall, I would say that the appointment went very well. I told my doctor that I had been feeling well, but that my wrists continued to be stiff, sometimes sore, weak and definitely had a very limited range of motion -- though they are far better than they were a year ago, and holding steady. He noted some slight warmth/swelling in my right wrist, which I'm not sure I would have detected. He ordered some new x-rays for my hands and wrists, which I was able to get done right there and then discuss with him. I had the x-rays taken, then went back to my room and waited for the doctor to return.

I finally decided I should request a copy of my x-rays from the doctor's office.
This is one of three from last week: wrists have some damage, but fingers still look pretty good!

The x-ray images were sent to his laptop, which he pulled up and showed to me, knowing that I was interested in seeing them. He actually took the time to explain what he saw in the x-rays -- definitely joint space narrowing, some erosions, and other irregularities -- and he pulled up some images of healthy wrists so I could see the difference. Then, we looked up my x-rays from last time -- in December 2011 -- and compared them to now. There was not a huge difference, which relieved me. Plus, I was glad to see that the bones were not fused, which had been my fear. However, my doctor made clear that he was "not happy" about the way my wrists looked. There was a rueful tone as we discussed the damage that had been done, with no way to reverse it. If only I had come in sooner, perhaps we might have made some treatment changes sooner and prevented some of the damage. Hard to say, but I will let that be a lesson to myself to call my doctor when I do have even a moderate flare that lasts longer than a week or two -- especially when I have been feeling well and have ~6 months between appointments. The Humira is still working well, so I'm staying the course for now. AND my rheumatologist ended up referring me to a physical therapist to work on increasing my range of motion in my wrists. More on that later.

Battery powered heated slippers! They are amazing.

I did end up showing my rheumatologist the bruises on my toes and explained that they had appeared in conjunction with Raynaud's phenomenon. He did not give a name to them, but did say that it looked like the blood vessels had burst from the Raynaud's. He didn't seem overly concerned about it, but said we could consider putting me on Norvasc next winter. The only issue is that I have a pretty low normal blood pressure -- so I'm not sure I want to be on something that will lower it. I'll see what happens next year. At least I have an amazing husband who found and bought me heated slippers!!

Lastly, my doctor ordered some blood work to check my Sed Rate, among other things. Everything came back normal -- and my Sed Rate was a 9!! That's the lowest I have had to date! Here's an updated look at my track record:

Click chart to view full size

I really appreciated the time my doctor spent with me on this visit and his willingness to help me get a better understanding of my own condition. I left feeling very positive (1) that the disease was holding steady and (2) that I have a doctor who values me as a partner in my own care.

And this little piggy went "ow, ow, ow"
all the way home...

This winter, I've noticed a new phenomenon that is occurring in conjunction with my Raynaud's attacks. You can read about my discovery of Raynaud's Disease and The Mystery of the White Finger here. It seems that over the past couple of years, it has gotten a lot worse. Not only do my fingers and toes turn white much more often (I literally just have to step outside for my toes to turn white), it's becoming more painful, too. Especially with this latest development. I've started noticing what I can only call "bruises" on the bottoms of some of my toes -- most notably on my two toes that have been most affected by Raynaud's this year.

In actuality, these bruises started appearing last year, though I didn't connect it to Raynaud's at the time. Last winter, I had joined a gym -- for a brief stint. I thought it would be a good option to workout during the winter months. Lo and behold, we had no winter last year, and thus I found myself ever-inclined to skip the gym in favor of doing something outdoors. However, there was also a month or so when I was hesitant to go to the gym for another reason: I was getting sores on my toes. I figured that it had something to do with my shoes and/or the elliptical machine I had been frequently using. They were small, round, reddish and felt like a bruise. Over time, they went away.

I did not rejoin the gym this year, so when the same sores started developing on my toes again, I finally made the connection to Raynaud's. I realized that last year, every time I went to the gym, my fingers and toes would suffer a Raynaud's attack (I blame the cold floor in the room where I changed clothes). It would typically take about 10 minutes on the elliptical before the blood would start flowing and I could begin to feel my toes again. This year, two of my toes are almost always numb if I'm walking outside or driving -- and it's really hard to warm them up in either situation (even with the heat on full blast at my feet in the car -- my little piggies need to get out of their shoes to warm up, but I don't want to take off my shoes will driving or drive in my socks, either!). I literally have to sit down and rub my feet or put them in warm water to bring the color back and get rid of the numbness and/or pain. It's getting kind of ridiculous...

Anyways, back to the bruises. I don't know what they are. Or exactly what's causing them. For all my Googling, the closest thing I can find is chilblains. Some of the images I have found look similar to my toes, but others do not. According to Mayo Clinic, chilblains "occur in response to sudden warming from cold temperatures." That would make sense with the Raynaud's. However, chilblains are supposedly inflamed and itchy -- mine are neither. It just feels and looks like a bruise. I have an appointment with my rheumatologist in a few weeks, so I'll see what he thinks. In the meantime, I'm just going to keep a close eye on things to make sure it's not getting worse and try to take good care of my poor little piggies!

at the Water's Edge

An Upbeat Update

This Little Piggy...

Raynaud's Phenomenon: The Mystery of the White Finger

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