What Does RA Feel Like?

Since being diagnosed with RA (Rheumatoid Arthritis), I have been asked by a few friends what it feels like to have this autoimmune disease. I've done a lot of research, read up on numerous RA blogs, and talked with friends with the same diagnosis. I know that everyone's experience with it is different, but some of the collective symptoms help me understand what I'm dealing with, when my complaints are related to RA or not, and how to describe such symptoms to my friends and family. I've also learned that RA is different from other forms of arthritis; it can strike at any age (young or old), last a short time and never come back OR last forever and never let up, has nothing to do with how fit or how fat you are, and is not anyone's "fault." It's different from osteoarthritis which is a degenerative "wear-and-tear" condition associated with aging. Osteoarthritis is the most common form of arthritis, and it's what most people think I have when I say I have arthritis - which makes them puzzled because they will say, "I thought only old people get that!"

As an aside: I don't blame them for thinking this. My grandmother had arthritis, and so in my head, I also thought arthritis was usually only something old people had unless it was some form of juvenile arthritis. Until I met my former coworker who suffered from RA, I had no clue that younger people could get such a diagnosis. So, I get it...

The cause of RA is unknown. It is an autoimmune disease in which the body starts to attack itself. It is a life-long (chronic) disease that is characterized by persistent joint inflammation which can cause irreversible joint damage over a prolonged period of time.

But, what does all of this FEEL like? Well, most RA patients (including myself) often feel feverish (and usually have a low grade fever most of the time); we feel tired and fatigued like you would when you have the flu; our joints (one, few, or many) are stiff, swollen, and/or painful. For me, that pain feels like a fire - specifically in my wrists and jaw. Those areas feel hot, sharp, and well... like they're on fire. Sometimes the pain is throbbing. The pain in my toes, elbows, and wrists usually feel like a sprain or a break. I will often tell Sam that I feel like one or more of my toes feels broken, but I know they're not because I had no injury. My jaw is tight, so my mouth won't open all the way - making it hard to eat, yawn, or feel relaxed in general (as the pain is literally right there in my face). My knees are weak, tight, and often shoot pains down my shins. Sometimes the tightness in my elbows and knees feel like someone has shoved wads of cotton into the joints so that I cannot fully extend or flex all the way in either direction. (I cannot reach my shoulders to sing "Head, Shoulders, Knees, and Toes" with Banner. My elbows are too tight and prohibit a full bend.) My neck can get very stiff - making it hard to turn it in both directions more than a certain degree. Again, this reminds me of a flu-like ache where it hurts your head to move at all! Joints can also feel "slippery" like they're going to give out (mostly my knees), and they pop and crack a lot (mostly wrists). Like most RA patients also explain, my hurting joints are very tender to the touch. Some feel bruised (usually elbows) even when against a soft surface like my mattress to turn in bed. Some joints when touched give me the "heebie jeebies" - again kind of like the flu when you don't want to be touched.

Emotionally, RA hurts too. I'm being really honest and just putting it all out there, but there have been days I just want to cry because I want out of the pain and tightness. I'll even bargain for an hour "off" so I can have full range of motion and feel pain-free for even just a little bit. I'd love to get on and off the floor, bathe Banner, play with him freely and not cringe the whole time. This morning, he moved my hand, and it took everything in my power not to keel over, cry, or scream from the pain I felt from a simple move. Yesterday, we went to the library for story time, and once again I was confronted with the dilemma of how to get on the floor gracefully in front of all the grandmothers who sat in the chairs behind me. Ironically, I bet most of them are much more able to maneuver their bodies to the floor (and off from it) much better than I am; I end up basically falling on my ass since my wrists and knees are no help to lower me gently and gracefully. (Just try it - try to get on and off the floor without using your wrists or knees - or the aid of the couch or chair you could slide off of. I'm working on this and trying to find a way to accommodate my body. Let me know if you find something that works!)

I have read blogs by women my age and much younger who are dealing with RA, and they have helped me describe this pain and know that what I'm feeling is, in fact, RA. They are fit, active, and otherwise healthy. They are moms or hoping to be moms one day, and they are facing the same difficulty of raising a child or children while they hurt inside. My heart goes out to them, as many of them have been dealing with this disease for much longer than I have, and their pleas and prayers are simply to get on the floor and play with their children, to run and jump and crawl and dance with their babies, to live a life free of pain and suffering. And, I hope they can one day - and that I can too!