It’s Lent – a good time to confess.
This is new territory for RA Warrior. This post is not like any before. I’m going to ask you some surprising questions. But let’s back up…
About four years ago, my toe joints swelled to twice their normal size. Naïve to RA politics, I did not photograph them. Neither did my podiatrist.
After a few weeks, the swelling subsided. As I detail in my RA Onset Story, RA symptoms methodically spread to every joint in a neat symmetrical fashion. I was systematically disabled. Since then, I live with tremendous pain, stiffness, and disability. However, I never again saw that remarkable swelling I did at the beginning – only minor puffiness.
Over a year ago, I began to research RA swelling because my rheumatology doctor was puzzled and frustrated. Is that funny? Why didn’t the doctor do what I did? Oh well, on with our story.
Some Rheumatoid Arthritis swells and some does not
The fact of Rheumatoid Arthritis swelling is widely accepted. Most doctors say it is essential for active RA. When swelling subsides, they call it “remission.” But, is there any evidence for active RA which swells less often or less obviously? Some.
This article in Arthritis Research and Therapy shows how researchers often separate swelling and tenderness during research. If swelling were mandatory for “joint activity,” then why would tenderness be measured separately?
Writing for About.com, rheumatologist and author Dr. Scott J. Zashin says, “Just as the presentation of rheumatoid arthritis may vary between patients, so can the appearance of the arthritis. Some may present with prolonged morning stiffness and pain in the affected joints, but not have any noticeable swelling. Others may have significant swelling.”
RA swelling messages
When Dr. Google did not give me much help, I peeked at some message boards. Sure enough, there were some RA’ers questioning why they had little RA swelling. Next, I posted open questions about swelling to see if any would reply. I even posted my email address to allow people to privately confide their stories and the names of doctors who treat RA the same even when swelling is minimal.
Here are excerpts from what was sent to me last year. I have only changed names to protect identities. Donna: “No swelling with my RA.” Karen: “I always had subtle swelling. I can’t really see it.” Mary: “Kelly, I’ve had RA for 30 years. For most of that time I had no swelling… from time to time in isolated joints. I currently have none. I am on Orencia and MTX now.” Ellen: “Seems when it comes to swelling if there isn’t any, they tend to become uninterested. Swelling is not guaranteed with RA. I don’t know when it became a deciding factor. I have virtually no swelling at all.” Judy: “I have RA and don’t have nearly the amount of swelling my older brother does. At times his fingers swell up like sausages. My swelling is usually subtle and occurs primarily in wrists and ankles. I wasn’t even aware of the swelling in my wrists since I didn’t know what to look for until the rheumatologist pointed it out. I don’t think the lack of swelling has changed my treatment, but did delay a diagnosis.”Amy: “I too have no daily visible swelling, even though I have stiffness & pain. The swelling comes here and there, but nothing regular.”
New RA swelling research
This is the new territory. This is the first time I have ever solicited a response from you. You’ve heard my confession. I would like to hear about your experience. Please take a moment to answer specifically.
- RA swelling?
Do you have it all the time? Does a joint ever hurt and creak without much swelling? Has your pattern of swelling changed over time?
- RA Inflammation markers
Have you ever had a normal CRP blood test result while you still had RA pain? Do you ever have normal ESR / sed rate result while you still have RA pain?
- Doctor’s comments
Has your doctor ever told you anything similar to…? “I don’t understand why you say it hurts because I do not see swelling;” “Perhaps this pain is due to something else because your inflammation is under control;” or “Your joints look good. Your RA is under control. Maybe you need an antidepressant or….”
Note: Don’t miss the follow up to this post, Rheumatoid Arthritis Swelling, Take Two in honor of the blog’s 2nd birthday!
- Blood Tests for Rheumatoid Arthritis, Part 2
- Where Do You Find Rheumatoid Arthritis Information?
- So Glad Your Rheumatoid Arthritis Is Cured
Note: If you would prefer to answer privately, you may email me at kelly @ rawarrior.com, without the spaces. I cannot promise to reply to every email. I do promise to never use your name or email without your permission.