What Would Rheumatoid Awareness Mean To Me?

In honor of Rheumatoid Awareness Day on February 2nd, Kelly Young at RA Warrior proposed a blog carnival so people could share what rheumatoid awareness means to them. I thought I’d share some of what I believe to be the necessary conditions of a sufficiently aware public:

[Image: Illustration of a groundhog and a Rheumatoid Awareness Ribbon. Text reads "Rheumatoid Awareness Day: Bringing rheumatoid disease out of the shadows: February 2nd: Learn more at rheum4us.org"]

• Public recognition that Rheumatoid & Autoimmune Arthritis often affects children, involves systemic damage, and can be deadly.

• Awareness that “arthritis” is a symptom, not the disease. Two of the most common diseases that involve this symptom are Rheumatoid Disease and Degenerative Joint Disease.

• Every hospital system having access to a Pediatric Rheumatologist. There are roughly 300,000 children in the US with Rheumatoid & Autoimmune arthritis, yet there are only 250 board-certified Pediatric Rheumatologists. JRA is roughly 28 times more prevalent than all types of pediatric cancer (10,400 in 2007), yet there are 1,900 board-certified pediatric oncologists. Awareness would change this.

• Institutional accommodations must exist specifically for disease flares. Current disability accommodations in jobs and universities are hard enough to acquire, and most aren’t suited towards people who have disease activity that fluctuates. Current accommodations generally do not involve a flexible absence policy, which would allow those who experience extremely disabling flares intermixed with periods of ability to participate in a more meaningful way.

ABC's of Pain

One morning at age fourteen, the first morning of my life with autoimmune arthritis, I woke up and just hurt. My chest, in particular. Later, at the Emergency Room, I told them such. When they asked, "how" it hurt, I replied, "a lot." When they asked me to describe my pain, I tearfully replied, "I don't know, it just hurts." The nurse snipped back that she didn't "know what 'just hurts' means." In my naivety (and excruciating pain), I lacked the words to describe my experience. Now, after years of living with pain, I've learned a larger descriptive lexicon, but have always remembered how silenced I was without it. Part of the goal of this blog is to share some of that hard-won knowledge with others.

In the past, we've talked about how to efficiently track one's pain and it's contributing factors, as well as how to communicate one's pain effectively to others. Today, we're going to explore something that's absolutely vital on the road towards getting one's pain diagnosed and treated: using the right vocabulary. Unfortunately for fourteen year old me, "hurting" just isn't a very descriptive way to explain a painful sensation. Agony doesn't promote much word recall, so what I needed then was a pain glossary-- a list of words to help describe the gamut of possible pain sensations. The McGill Pain Questionnaire does a good job of providing some qualitative words to describe pain.

For a few more, check out my ABC's of Pain:


A is for Aching
B is for Burning
C is for Crushing
D is for Drilling
E is for Electric
F is for Freezing
G is for Gnawing
H is for Heavy
I is for Itchy
J is for Jarring
K is for Knotted
L is for Loose
M is for Migratory
N is for Numb
O is for Occasional
P is for Pressure
Q is for Quivering
R is for Radiating
S is for Stinging
T is for Throbbing
U is for Uncomfortable
V is for Variable
W is for Wrenching
X is for eXplosive
Y is for Yielding
Z is for Zapping

Chronic in the Cold

Cold weather does horrible, painful things to many of us who suffer from chronic pain. With winters first big cold snap underway, now is a great time to share tips and tricks for staying warm, comfortable, and safe while dealing with chronic pain when the mercury drops!



Know your hot-pack options. While a hot pack can do wonders for pain any time of the year, when it’s cold outside they’re even more fantastic. There are a ton of different types of heat packs you can choose from to suit your needs: electric pads and blankets, microwavable pads, hot water bottles, and chemical hot packs. There are benefits and drawbacks to each method, but all are relatively cheap so it’s worth experimenting to find what you like best.

Maintain compression. One of the things that makes cold weather so painful for those with chronic pain is that it often comes along with a drop in the barometric pressure. (I blogged more about why barometric pressure is no good for pain here.) To help cope with drops in pressure, keep your tissues as compressed as is comfortable. There are many types of tights and socks and gloves made specifically for this purpose, as well as shape-wear that utilize compression, but leggings and ace bandages are things you might have around the house that work in a pinch. Being submerged in water is another way to maintain compression, so...

Take hot baths and soaks. The combination of moist, all-over, penetrating heat and the pressure of being submerged under water is blissful when cold weather dials the pain up. Taking a nice, warm tub bath is one of the best, most relaxing ways to enjoy a soak. For many of us, whether due to lack of access or lack of accessibility, baths are not an option, so we must rely on soaking individual body parts. You can sit along side a filled bathtub to soak your feet and enjoy the warm steam, or fill up a sink or basin and soak your hands. Just be sure to moisturize after, as hot water is very drying to the skin.

Limit your exposure. Of course we can’t always avoid the cold, but limiting our exposure to it can do a great deal in preventing extra pain. The obvious part is stay inside when you can; don’t go outside when you don’t have to. Turn the thermostat up a little to accommodate for the colder outside temperature so you aren’t shivering inside, and bundle up with socks and sweaters. If you do have to go outside, be sure to dress in layers, with a non-cotton layer closest to your body— again, this is where leggings shine— plus wind-proof outer layers and a fluffy bulky material like wool or fleece in between. Wear a hat, mittens, and a scarf. Take time to heat up your car.

Put warm in. One of the unpleasant things about the cold is that it causes shivering, which is basically the uncontrollable movement your body makes in an effort to warm itself up. When motion is one of the things that causes you pain, the rapid, uncontrollable jerking inherent in shivering is torture. To stop the shivering, you need to warm your core temperature—one of the fastest ways to do this is by eating or drinking something warm. Tea, cocoa, coffee and soup are quick and easy when you walk in chilled, and will help you warm back up.