Taking a poll here.
How many RA joints do you have involved? And how quickly did you progress from whatever you started with to however many joints are affected now (weeks, months, years?).
As I understand it, the RA joints are
Toes (some or all?) and feet in general
Ankles
Knees
Hips
Knuckles (some or all)
First row of finger joints above knuckles (some or all)
Wrists
Elbows
Shoulders
Neck
Jaw
If there are more RA joints, I don't think I want to know about it.
Do you think the speed of progression and number of your joints involved is any indication of severity of your disease (besides the obvious point that the more joints that hurt the more potential for trouble you have)?
I have all of those joints affected, except for shoulders, neck and jaw.
My first flare, a year and a half ago (during which I went undiagnosed because of a negative RF) lasted 7 months. During it, only my hands, feet, ankles, wrists and knees were affected.
This flare, my second, has been 4 months so far, and the inflammation has moved up to include elbows and hips. In my mind, that's a fairly quick progression. I don't know what the norm is, but it's too fast for my comfort!
Probably my feet bother me the most: the bones in my arches seem to be affected, so whenever I stand up after several minutes of sitting, I have to hobble around for the first dozen steps, until they loosen up. Very graceful.
I'll be interested to hear what other, more knowledgable people have to say about your question, re: pace of progression, etc.
I went to my family doctor for a physical 1 year ago this month and told her I just felt achey and beat up. She did the blood work and discovered RA...I had no idea. My ra factor was 314 and all of the other numbers were very high too, so I was diagnosed right away.
By the time I saw the rheumatologist one month later ALL of the joints you mentioned were affected. They tell me it's severe and aggressive RA, but I am feeling a lot better now with Remicade.
Wow, Scout, you have my sympathy! The words "severe and aggressive" make my blood run cold.
My first positive RF was 25, and I feel bad enough. I can't imagine how you must be feeling.
My hands (that includes wrist, fingers, etc.) left knee, and feet (ankles and toes) are affected. Sometimes I think it is creeping slowly into my back because my back will hurt when I stand to do dishes. when i was first dx it was just my ankles bothering me..I was 8 within weeks/month my fingers, wrists, shouldars, toes, and kness were also involved. since then my shouldars have been not so much of a problem...but for awhile my hips were bad...did physical therapy for them-much better now. Do basically now 10 years afterbeing dx im effected in all my joints in the extremeties....back and neck seem to be ok Strangely, when I went in for my first RD appointment (about 6 months ago or so) I thought it was just my hands and arms up the the elbows. By the end of my visit, he informed me that I had 23 tender joints. Weird. I guess I just sort of ignored the ones that didn't hurt as bad as my hands. My worst now are my hands and my feet, though.JRA presents differently from adult RA in many cases. I started
with pain and swelling in my left ankle for 2 years. I saw my
peds rheumy in June, and by August I had EVERY joint in my
body affected, including spine involvement. I was in a
wheelchair by September. Since about a year after that, I get
flares that only involve certain joints, here and there. Most often
it is my weight bearing joints that flare. This latest flare,
however, has affected all of my joints to some degree. I am
classified as a moderate case, but have never shown RA in my
blood work. My sed rate also doesn't change much, even when
my joints are very warm, painful, and swollen, and X-rays show
inflammation!
I have JRA and I find that my Wrists and hands are the worst. My toes hurt when I've been walking alot but i'm lucky that my ankles or knees do not hurt. Last couple of times I went to the rheumy I complained that my hips were hurting and they seemed to think I just had an injury from sport. This was around 6 months and they still hurt, I've kind of accepted that its arthritis but we will see at my next appt in a couple of days. I feel like I don't really know what a flare is because I have some pain all the time, whether it is in my hands or my hips. In the two years i've had this, i've never been like yay i'm free of pain... do you guys feel like that? anyways...
best of luck
Kadi
When they first diagnosed me somewhere between 18mo and 2 yrs old, it was just my ankles. Over time I have added - Knees, Hips, Wrists, Fingers, Elbows, Jaw, and I'm pretty sure my shoulders. But not in that exact order. I don't know that there was any rhyme or reason to which joints were added...Tho the hips, shoulders, and elbows I have added myself in the past 3 years. it's kinda obvious when they swell and hurt like every other joint. LoL I'm 23 so thats a lot of years to add all those joints, but I'd say it went sort of like this: by 4yrs old ankles and wrists/fingers, by 12 years old ankles, wrists, fingers, knees, and jaw. And now it's darn near everywhere.
But my case is considered mild to moderate. So far. Heh.
I have RF negative JRA, started in right knee (dx 1+yrs). Few years later it was both knees and both elbows. Calmed down alot during teen years and then after a car accident
Now at 37 I have "Jaw to Toes" involvement, spine - costo - subtalar, you name it.
My rheumy says JRA patients are often difficult to treat because they don't report pain, or don't report pain as pain, instead using words like "sore" or "stiff". I know there's been some published articles on the subject of JRA and pain assessment . . . but right now I'm too "sore" and "stiff" to go look them up! I have all except the hips.
my symptoms started about 2 years ago, but i went to my primary this summer and was offically diagnosed a month ago. the joints that are effected:
every joint in my hand, my anckles, and most of my toe joints, however when i've been in a flare my elbows and knees get really painful with mild sweeling but its more of a general soreness.
however its not known if its in my back and my neck, i get what feels like intense pressure that in my joint which causes me to get really stiff if i don't crack my nuckles (or toes), i get the same feeling in my back and in my neck which is why i'm convinced there involved as well. i didn't think of mentioning to my rdr. when i was being diagnosed, however i'm going back mid janurary because the stiffining and the pain can get really intense.
Thanks to all of you for your replies. It helps to see the variety of progression. Mine seems like it's running a race, but I'm hoping to stay in mild-moderate.
Lynk, I like your 'jaws to toes' phrase (I've got it everywhere but the jaws now, and I figure that's next week's party
I'm learning a lot about JRA from you guys. There are a lot of you here who have it. I sure didn't know that pain assessment is different for people who have JRA, but I guess it makes sense, since you've had it for so long and starting while you were still forming as children.
I have every area you mentioned except the jaw. The only area you didn't mention; which few doctors will is my spine. I went to a spine specialist for that DX. He says it takes years for it to affect this area; but it most certainly does. He had to do an MRI before I was convinced myself....because rarely do you hear that from anyone. In fact I'd heard it didn't affect the back; but he says I'm living proof....and there's many more as well.
Lovie, didn't I say that if there were more RA joints I didn't want to know about it?
OK, it's better to be informed. But ouch, I hate to hear that it's in your back now. That sounds like a particularly challenging place to have RA.
You were fortunate to find a good doctor to diagnose it, weren't you? Even though you were trying to deny it. Denial is a beautiful state.
When I first started having symptoms of arthritis it moved all over and I was diagnosed with palindromic arthritis. It would move from a few spots to other places and was very unpredictable. I seemed to have more problems with my knees, the back of my neck and my jaw and the pain in these places was excruciating at times.
These days, I always seem to wake up with a stiff neck. I just assumed it was my neck muscles thath were stiff, but do you suppose it could be the joints instead?
Started in the hands and has progressed to every major joint. Now, it seems to be affecting my spine which is the worst.
Yes, blueheron, get it checked. Don't take chances with your spine. The majority of RA patients will eventually have spinal problems.
Strangely, I don't hardly swell and don't have deformities like most people with RA.
Strangest is the toes. Rarely bother me, but when they do it is like they are screaming, "Here I am! Here I am!"
The spine, for me, has become the scariest because I don't know if it is that or nerve damage. But it is taking away my ability to walk and do so many things.
Now everyone go out and have a nice walk for me. I want to do this so bad. I miss walking out my problems.
ah,, same here. During my first diagnosis I had ankle and finger issues for about an hour or two after I woke up and before I went to bed. Since then, It has affected every joint mentioned in the list as well. I also have a severe/aggressive diagnosis.