What Is the First symptom of Rheumatoid Arthritis?
Officially Sanctioned RA: Do Rheumatoid Arthritis patients have the symptoms they’re expected to have?
From what I’ve read in several books, the first symptoms of Rheumatoid Arthritis are supposed to be in the hands (so that RA can be diagnosed). I’ve mentioned to you before that hands are considered central to diagnosis of Rheumatoid Arthritis. (Check these out: Typical RA, Why Is Diagnosing RA So Difficult, How is RA Diagnosed, parts 1 and 2.) Many researchers and doctors consider RA to be primarily a disease of the hands and wrists.
Is that entirely accurate?
However, I have spent just as much time reading the accounts of actual patients with Rheumatoid Arthritis. Many RA’ers do not experience symptoms in the hands early in the progression of their disease. In some cases, this is why diagnosis is difficult: those RA patients are not following the pattern which is set forth by those who officially authorize and certify the definition of Rheumatoid Arthritis.
Here is a partial list of some first symptoms that have been told directly to me by actual people being treated for Rheumatoid Arthritis:
Eye inflammation / uveitis / iritis
Feet pain and / or swelling
Back pain (spine)
Pleurisy (lungs)
Heart (heart disease or inflammation of lining)
Ankles (pain and damage)
Elbow
Hip
Shoulder
Knee
Intestinal inflammation
The Unlikely Rheumatoid Arthritis Symptom: Feet
I am one of those lucky folks whose Rheumatoid Arthritis struck my feet before my hands. The pain began at age 15. The occasional swelling got worse over the years.
Early in 2006, there was intense swelling and pain which caused deformity literally overnight. One morning, I awoke with a toe that had moved about 45 degrees. I could not walk on it. Within 24 hours, the other foot did the same thing. At least they matched.
Within a few days, Rheumatoid Arthritis attacked several joints on both feet so that I could not wear shoes. It felt as if I were standing on rocks all of the time. It took more than a couple of doctors to realize that this was actually Rheumatoid Arthritis. In fact, I was not diagnosed until it had spread to several other joints. Incidentally, that did not include the hands at that point.
Since I did not realize the seriousness of my fate, I never took pictures of those unbelievably deformed feet. Fortunately for me, the swelling is gone and I can walk short distances now with only moderate pain. However, I have a completely different pair of feet. RA feet.
Please leave your comment below to tell us about your first symptom of RA. (Or you can answer for someone you know who has RA.)
Recommended reading:
Sympathy and Living with Rheumatoid Arthritis Symptoms
The Onset of Rheumatoid Arthritis: How Does RA Begin?
My Quest for Answers to Questions About Rheumatoid Arthritis
Weathering Rheumatoid Arthritis
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For me the pain started in my hands and elbows. My first nodule was on my left elbow.
I’ve heard of nodules on elbow but where? I have RA & nothing I can feel on elbow however my fingers are starting to deform and my toes (big toes) can feel nodules on side of big toes. Sometimes so painful especially my fingers.
Nodules can be just about anywhere. Elbow seems to be a typical starting place, especially on the back of the elbow. Also, they are common on knuckles. They can begin tiny like a pea or become much larger.
My first symptoms were iritis (imflammation) in eyes, then ankle problems (torn achilles tendons resulting in surgery on both sides). Not until extreme fatigue hit me last year coupled with finger swelling and pain did I get diagnosed with RA and start on treatment. While my symptoms did eventually spread to all fingers, wrists, elbows, and knees (my latest big battle), it all started with “non typical” RA symptoms that didn’t meet the traditional RA patterns.
Thanks for pointing this out. I wonder how typical these “atypical” symptoms are? Is there any research out there about it?
Research?
I keep looking Andrew. I am hoping to bring this to the attention of the “powers that be” . However, I have not yet read that anyone is on this bandwagon but me.
Actually, I believe that this (learning how RA really begins) ought to be a concern of doctors, too, so that they could treat RA more “successfully” ; and researchers, because they could more “successfully” find treatments and a cure.
My first symptom was my right shoulder doing what Kelly’s foot did. Middle of the night, most extreme pain I’ve ever been through, that did not go away like “normally”. 14 years later and my left shoulder never did get attacked…..I’m A-symetrical. Only this last year have my hands been involved. And, only my left hand. BTW, right shoulder has been classified as a “frozen joint”.
My first RA flare was in my left shoulder. I thought maybe I’d slept on it wrong, somehow, though how sleeping on it could make it so painful I couldn’t raise my arm didn’t occur to me. I just didn’t have context for it. After that, shifted around. Big toe, right foot. Left hand, pointer finger knuckle. Feet that hurt all the time, as if I’d been standing on them all day. When I finally went to the doc over all this mysterious pain, I was stunned when he diagnosed RA.
Not to my understanding..it could be gout or 20 other things.
The problem with RA is that the litmus test is very generic among most rheumys and internal med drs. Unless you are at a caliber of dr that really understands, many people go undiagnosed or misdiagnosed. I was one of many that suffered from swollen hands, ankles, and feet, but I was told that women over-react and come back in 6 months if I still felt bad.
Not always true. It goes everywhere. Mine started in my back.
Mine started in my feet too. I was 23. They thought I had gout, a 23 yo female with ‘normal’ gout blood tests who has her uterus. Said they’d treat it like gout or they’d have to aspirate the joint (1st MTP caused the most issues) and they did not want to do that! It felt like shards of glass grinding into the joint. { Went to foot dr in the meantime (age of 30)-several cort. injections…still not right.}
Fast forward 10 years, it spread to my elbow and an MRI and subsequent synovectomy confirmed the presence of RA.
started in 1 toe, then a few months later my fingers.
Mine was bruised feeling feet
My fingers did hurt. Couldn’t snap a onesie but I also couldn’t get off floor after changing diaper. LOL I hurt all over! (via twitter)
My first sign 29 years ago was my left shoulder… couldn’t lift it without feeling like it would break.. then the next day the other shoulder kicked in, followed by my ankles and feet. My hands were ok then… but not now.
Angie, Wren, and Jana!
I have read so many stories about the shoulder being first. Why is that in no books or studies? There is some significance here. This is not just a hand disease, I’m sorry.
BTW, I know exactly what you are describing. My own shoulders did the same thing – about a month after my feet. BOTH shoulders in the same night!! It was like I’d been shot. I wanted to go to the emergency room. It was like labor pain.
Wow, thanks for all the info you have. My first real pain was in 2007. in my left shoulder. Although I think I have a high tolerance for pain, I could not bear it, and could not stop tears. (At least with childbirth, I got some paikillers.)
Hi Kathy,
Good point. At least with childbirth, it is expected that you need pain relief.
I was diagnosed 3 weeks ago on my 2nd appointment with the rheumy. I’m a little confused about what came first. In the past 2 years I’ve had 2 knee and 2 shoulder surgeries for tears. Each time I would wait to be fully recovered, but it didn’t happen. That’s a long story, so I’ll give you my best guess in the order they appeared. Left SHOULDER, left knee, right thumb, left middle finger, 3rd toe right foot. 3 weeks ago… both wrists, ankles and hips. Well I’m finally having symmetric involvement after 2+ years. This is why I didn’t get diagnosed early. Now I have 4 destroyed joints! YOU ARE RIGHT, THINGS NEED TO BE CHANGED!!
At age 12 I was diagnosed with a sprained ankle, and when that didn’t get better, I was hospitalized for testing (and bedrest, it was 1963). There they discovered that 1 hip wasn’t working right either, and even tho it was a small rural hospital, they diagnosed me with JRA. So, 1 ankle & 1 hip, followed by 1 knee. It wasn’t until my 20’s that both elbows became involved, and over the years, more & more joints. Worst thing is, now my 8 year old granddaughter has been diagnosed with JRA, jaw, ankle, toe so far. :~(
More shoulders and ankles and hips before hands! I knew I was not alone!
Ronda: I am so sorry this is happening. I have been right there. I call it the domino time – when the joints fall one after the other. My first year was like that – untill it was everywhere. People stopped asking – or listening – when it just kept going. Who could believe THIS much RA?
Helene: I would love to hear more of your story and your treatment back in the 60’s! You are an RA veteran warrior then. So sorry to hear about your grandaughter. :C
Feet!
heel & back pain, & leg cramps were my first symptoms. Recently I have had bad swelling in hands wrists & feet.
Becky, I know what you mean about bruised feeling feet, I’m dealing with that right now!
It doesn’t start with just swollen hands and feet. It can be in any joint. I have a friend just dx’d because she had pain & swelling in one knuckle. I know ppl whose knee(s) were causing them problems. If you have a joint then RA can get to it and attack it. Lately my jaw is killing me and is incredibly stiff in the morning.
I had “TMJ” in high school that was probably RA (erosions now at 31), then foot pain that was “RSD” in college and kept me from running, then my wrists kicked in around 29, and that’s when RA was finally diagnosed.
FEET, FEET, FEET…
Liz, I agree with what you said. But, I have had more than one doc tell me the exact opposite to my face.
Katie, it’s funny that when it got to the wrist, they could “see” that it’s RA. I am curious, was your doctor willing to say that it was RA all along?
my fingers
You name the joint…it has hurt! I just knew my body hurt all over and if I had to choose a joint to work on first, I’d have a hard time deciding which one to choose. I always had some sort of reason for the pain (i.e. sports injury, overuse, etc..) but never seemed to heal quickly/fully enough.That lasted for 10 or so years before the official diagnosis just a few months ago. I KNEW there was a reason!! Right at this moment my feet hurt the worst, second would be hands. This time last year it was my shoulders. Tomorrow is a new day and that could be changed.
Felt like a tendon tear between the index and second finger in right hand. Then the hand swelled up. Then the second finger drifted. Hand docs gave me cortisone shot, thinking it was a torn ligament.
Went to RA doc, who tested me twice; no blood test indicators. Diagnosed with sero-negative RA. Was on methotrexate and pred for 8 months to no changes, so he was ready to give me retuxin infusion. Second opinion said not RA and took me off drugs. Then what is it?
Third doc said I had symptoms, as left hand is starting the process. But nothing tests out. So I’m on minocycline, which is being tested for RA patients to get the swelling down and kill the cells… frustrating. I either do or don’t have it. BUT I have osteoarthritis, which could mess up the mix–pain in every joint sometimes, feet, elbows, fingers, knees, hip. Sorry for the long post…
It started when I was in elementary school with a knee that would swell every time I got strep throat. It was very strange but I missed a lot of school and certainly a lot of gym class. I spent so much time having tests done at Children’s Memorial Hospital downtown Chicago. Eventually diagnosed with Reactive Arthritis, when I was 15 I fractured my spine in a horseback riding/steeple chase accident, then when I was 19 I became really ill with a 104 fever and the drs said my gull bladder didn’t work (did not contract) which was making me ill. After I had that removed they were perplexed that a 19 year old would have gull bladder problems. Next I had iritis at the age of 20 (this was six months after my gull bladder was removed) and the Illinois Eye Institute said Iritis was serous and indicative of something else going on. I had blood work done, spoke with my primary dr who did more blood work and x-rays and diagnosed me with Ankylosing Spondylitis. After that dr retired I changed drs who said well you are young and a woman no way it could be AS but after all sorts of tests came back and said “I’ll be… you have AS!” I now have problems with my knees, hips, eyes, spine, c-spine, left shoulder occasionally ankles and fingers. My toes are ok so far. Today I realized that I am in so much pain and so limited that I don’t think I can work and I don’t know what to do. I am so scared and don’t know how to pay my bills and I’m in collections for two hospital bills that are hundreds of dollars after my insurance covered their part. Life is a very scary place with AS or RA and it makes me afraid that I will never be able to have children because I couldn’t care for them though I have always wanted to be a mom.
Elizabeth EllisFeet for me as well, I had a very swollen, red, hot big toe and happened to mention it to the doc when I went to see him about something else, I was (luckily!) diagnosed with RA from this visit as my bloods showed raised levels of ESR. After this it spread to the balls of my feet and then just seemed to be in a different joint every week, not really affecting my hands to badly until a few years later.
Mine started with my knees. I thoght because I had played sports while growing up that I was getting old (a little early at age 32). A few years later I had a buging disk in my neck. I had no particular injury that I recall that caused this. It progressively got worse until surhgery to fuse was done. Next came a rotator cuff tear with apinched nerve in my right shoulder that required surgery to repair. I joked that my goal was to be completely re-built by the time I was 40! No one ever connected the dots. About 3 years ago I requested that my PC run an arthritic profile on me while doing some other routine tests because my Mom had Lupus. He did so, while the ANA was normal, I had an above normal RA factor. PC sent me to a rheumatologist who said that while he agreed that RA factor was high, it wasn’t RA because my sed rate and c-reactin were normal. Come back later. Not until this year, I saw an add on a website where UAB was looking for participants who had not received any treatment before with RA for a clinical trial. I had missed the study enrollment period but the nurse I spoke with was so sure I had RA that she made an appointment with the head of the clinic. However, not until the ultrasounds were done on my hands and wrists and revealed the inflamation and joint damage was I finally diagnosed with RA. Have been receiving treatment for 3 months now of Enbrel and methotrexate combo. I have not seen any improvement yet — but I am still hopeful !
Feet and shoulders. I was already in the process of being diagnosed when it moved to my hands.
For me it all started with general aches and pains and extreme exhaustion.At first I chalked it up to the normal aging process-but when I looked at the energy my older sibilings had and asked if them if they had aches and pain similiar to mine and they said no. I went to the doctor and basically told her I felt as though I was 90 years old. She ran the basic labs for RA and sure enough that was it.
I first had RA symptoms in several joints all at once (hands, wrists, feet, knees, shoulders, hips, elbows). I also had lower back pain, but my rheumatologist said that my back pain couldn’t possible be related to arthritis. (I have doubts if that’s really true.) Eventually, the pain subsided in most joints except for my hands and feet. After 3 years, the pain and swelling in my knees has started to come back, though.
My early symptoms were my feet and hands together. My feet hurt so bad I would dread getting up and having to walk on them while my hands were so stiff and swollen, I could not close my hand to make a fist.
Mine started initially with occasional wrist pain. Fast forward 10yrs, then it really kicked off beginning with my knees & rapidly spreading to almost every joint in my body.
Have had RA almost 3 years now & in that time only had swelling once in my left elbow & once in both hands. The pain & stiffness has been horrendous at times but through all that i had none of the swelling that the doctors look out for.
Elaine, I love you. Thank you for telling the truth in black and white. I have actually heard that from many people. I just want to see the ACR and the AF and the docs I see acknowledge that reality. Did you read the stats on ESR in this post? Blood Tests for Rheumatoid Arthritis, part 2
My RA started primarily in my left ankle. I could not walk on it and it was swollen to a point where it did not even look like an ankle any more. My primary care physician gave me oral steriods and told me to call in 6 weeks. The swelling got worse. I instisted on seeing a specialist. He was a little slow to find it, but did. I had xrays, ultrasound, and finally an MRI. nothing. Then lots of bloodwork. My RA factor was 63, it should be less than 14. He sent me back to my primary and then my primary sent me to a rheumtologist. Now i feel it in my knees, hips, and shoulders. I hope it stops soon.
I hope you get some relief soon, Linda.
thank you. I recieved another burst in my behind this time and talk of adding a third oral medication. It is better, but not doctor said its not good enough. I am just concerned about the effects that predisone has on the heart, especially since heart disease is already in my family – mostly the men though.
Take care
I started with deformed toes. The podiatrist asked if I had RA but I didn’t know it at the time. About a year later I woke up with extreme pain in my left shoulder. I thought I was having a heart attack and went to the ER. They sent me home with vicodin. The next day I had the same pain in my right shoulder. It took about 3 months before I got diagnosed with RA. That was five years ago.
Kathy,
I think we are related that story sounds so familiar.
Kelly, how do we un-diagnosed people know to go to a doctor? Like you, I don’t like to head to a doc for every ache and pain. How do we know what is a warning sign and what is just…well, not a warning sign?
Keen question, Christy! Here’s my brief answer, but you have got me thinking!!
First, we are talking about pain that is often so severe – it’s akin to childbirth & which is accompanied by sudden weakness/disability. Second, there is no obvious reason for the pain: no injury, etc. Third, the pain seems to multiply, to more joints, usually symmetrically. (I guess what I’m implying here is that a person does tend to go to the doctor when it’s like this…
Any GP can run 2 easy blood tests (anti-CCP and Rf) which will catch almost 3/4 of RA. If those tests are negative, and symptoms persist, most people do keep going to the doctor. Unfortunately, GP’s are not really good at recognizing early RA. We need to train them to do that. Part of my reasoning behind the Onset Story project.
As you’ve read here, the first symptom might be extra-articular (not in a joint). That is trickier and it is even more important to have a smart doctor. And that leads me to my final point… you are showing how much an awareness campaign about RA is needed. The PR problem is exacerbated frequently by things like the Woman’s Day article and the People magazine citing.
Thanks for asking!!
My did start in my hands. I started dropping things a lot. Broke every piece of stem ware in the house. Knuckles swelled and became so stiff I couldn’t pull the lid off the yogourt container nor open a zip lock bag. I eventually developed little “red” papules on my distal finger joints (just below fingernails. Those I now know are Herberdeen’s nodules. Couldn’t grip the steering wheel of the car. It next spread to wrists, then feet/ankles, then knees. By month 9 it had spread to shoulders and elbows, entire spine. Now after one full year of RA, it is much faster to tell you where I don’t have it: my hips.
I loved the last line. It keeps running through my head still. I know the RA is not funny, but that was a funny way of putting it. Thanks for sharing.
Mine started in my feet also.They hurt soooo bad!!Went on to my knees and felt like I was walking bone on bone!! But what really helped get me diagnosed was the stiff neck I had for over a month!I called my Dr and told him I wasnted him to run every blood test there was out there until he found out what was wrong with me!! I was working as a housekeeper at a local hospital for 27 yrs! Just thought when I hurt it was from alot of heavey lifting and hard work! I can no longer work and am on disablity.But with meds I am able to function very well right now. Its not been easy to get the right meds all lined up! Been threw several. Metho helped the best but damaged my liver so had to stop it. Now on Humara..and several others. So far so good. PRAISE GOD…with out GOD in my life Im sure I wouldnt have made it this far. I have been so BLESSED yet again by finding your site. RA people are so devoted to one another…its like a brotherhood thing.Some times I beleive GOD brings people together threw illnesses to join fourses and help others!! GOD BLESS u all my brothers and sisters in this RA world together..U R all awesome….
Ditto to so much of this, Cindy. Feet, feet, feet…
And God bless every one of us.
I am enjoying your different RA topics. My first symptom was in my elbow. I picked up a tea glass and could not lift my arm
My hands were the first body part diagnosed and the feet followed a month or so after. However, I had TMJ in high school (10 yrs before the RA diagnosis) and I had bursitis in my shoulder about 5 or 6 mos. before the RA diagnosis. The TMJ & busitis could have actually been the first RA symptoms.
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Just fyi. In rare cases, pulmonary fibrosis might be the first “sypmtom” of RA. It could go on for some time, “asymptomatically” before being diagnosed either incidentally or because one finally gets so short of breath they seek answers. Even then it could be a while before the typical signs of RA, or other autoimmune disease make themselves apparent. This can make it diffucult to distinguish pulmonary fibrosis associated with collagan vascular diseases from idiopathic IPF which generally doesn’t respond to the RA drugs and prednisone.
I had slight knee and elbow problems a couple of years before mine hit bad enough to go to a doc. If I recall correctly, I may have had some eye inflammtion a few times during that period. The summer before the winter I was diagnosed, I had some minor feet symptoms, with general stiffness and gelling after physical activity and starting to feel like a 90 year old at 30. Was a weekend yardwork warrior and figured I was just getting out of shape or something. The fall season a year before, I got a bad case of shoulder bursitis. All of these were written off to other, and as being minor things obviously. It was the pain in my wrists when I tried to lean on them while sitting on the floor that took me to the doc finally, and then the constitutional symptoms seemed to hit hard then.
Thanks, Chelsea. I’ve seen almost anything but a toothache. Hey, wait, I have seen a toothache as a first symptom. Well, jaw pain anyway…
The puzzle pieces make sense after the fact, don’t they? Hoping education will make a difference on this someday. Hope you are getting some relief.
It was my feet – my heels hurt. Very first symptom. My fingers were the last to hurt before my rheumy started me on prednisone. Luckily, I haven’t experienced any deformities in my joints. Doctor found a little erosion in the bones of my feet, but that’s all.
Jackie, it was a long time before I knew that my 30+ years of heel pain was part of the RA I’d had in my feet all that time. I thought that heel pain “couldn’t” be RA until my 1st rheumy explained it to me at one point. Feet, feet, feet… See here at the ending to my Onset Story.
I wanted to post this for the people who here who have talked about thier arthritis movin from joint to joint.
Mine started with sewlling and pain in the bridge of my nose. It went away and came back again about a year later. A year or so after that I had extreme pain swelling and redness on the top of my right hand. After that went away I too woke up in middle of the night with my shoulder. My Rheumatologist diagnosis me with Palendromic (traveling) arthritis. Palendromic Arthritis is the most painfull form of arthritis. It’s onset is very sudden(within a half hour) but only last about 24-48 hours. I have found that the severe pain from it last about 6 hours and then slowly strats to get better. My Rheumaiond factor was very high and I had a positive CCP. She told me that 60% of people with palendromic arthritis go on to develope RA, especaily people who had positive lab test. My fist symptoms apeared in about 2004. Last October she gave me the diagnosis of RA. It now involves my left hand, right shoulder, right ankle, and left big toe. I have nodules on toes in both feet and in both lungs.
Hi Joanne,
That’s very interesting what your doctor told you.
There are some articles on Palindromic Rheumatism / RA on this site. Here is a link here and here. Also my Onset Story here.
My RA was palindromic for over 25 years. It would come and go. Then 4 years ago, it stopped “flaring” and just stayed. It’s in every joint & has affected other things like you. Your story is another one that shows that Palindromic RA is not something “harmless” – I wonder how long ago it began to affect your lungs or cause damage. Thanks for sharing here. Maybe you’d like to submit your Onset Story here.