What Is the First Symptom of Rheumatoid Arthritis? | Rheumatoid Arthritis Warrior

What Is the First Symptom of Rheumatoid Arthritis?

Officially Sanctioned RA: The First Symptom of Rheumatoid Arthritis (UPDATED 2016)

First Symptom of Rheumatoid Arthritis

Do people with Rheumatoid Disease (PRD) have the symptoms they’re expected to?

From what I’ve read in books and online, the first symptom of Rheumatoid Arthritis is supposed to be in the hands.  So that it can be diagnosed. Because most diagnosis RA by the hands. (A bit of a circular argument, but that’s how it is). I’ve mentioned to you before that hands are considered central to diagnosis of Rheumatoid Arthritis.

Check these out:
Is There a Typical Rheumatoid Arthritis?
Why Is Diagnosing RA So Difficult
How is Rheumatoid Arthritis Diagnosed part 1
How is Rheumatoid Arthritis Diagnosed? Part 2

Many researchers and doctors consider RA to be primarily a disease of the hands and wrists. Other small joints can be affected, they say, but hands are first. According to PRD, many doctors examine hands to diagnose as well as to judge disease activity.

Is that an accurate description of the first symptom of rheumatoid arthritis?

No.

How do I know? I know because I’ve gained a broader perspective by reading many thorough articles on diagnosing RA like this one. Also, I’ve spent even more time reading the accounts of actual people with Rheumatoid Arthritis. Many PRD do not experience symptoms in the hands early in the progression of their disease. In some cases, those PRD are not following the pattern which is set forth by those who officially authorize and certify a “definition” of Rheumatoid Arthritis. This is can make diagnosis difficult.

Here is a first symptom of rheumatoid arthritis list that I compiled after talking with real people being treated for RA:

first symptom of Rheumatoid Arthritis: feetEye 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 first symptom of Rheumatoid Arthritis: Feet

I am one of those lucky peeps whose Rheumatoid Arthritis struck my feet before my hands. The pain began at age 15. The occasional pain or 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, RA 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 a few doctors to realize that this was actually RA. 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 went down and I can walk short distances now with only moderate pain. However, I have a completely different pair of feet. RA feet.

Updating this now in 2016, I’ve had many injections over the years in my feet to bring down the extreme inflammation. I still see the same podiatrist who splinted my feet 10 years ago to help the joints come back in line. He helped diagnose my RA. The lumps beneath the base of the toes are always there, but ice packs help somewhat.

IF YOU ARE a PATIENT –

Please add your comment below to tell us about your first symptom of rheumatoid arthritis. Or you can answer for someone you know who has RA.

IF YOU ARE a DOCTOR or NURSE –

Please read through the hundreds of comments by patients to see the wide variety of first symptoms.

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

917 thoughts on “What Is the First Symptom of Rheumatoid Arthritis?

  • March 7, 2018 at 6:27 pm
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    What sent me to the doctor was hip pain. It progressed to my knees and feet. My hands started later, although, in retrospect started earlier with weakness. Have issues with shoulders too but not sure if caused by the RA. I am seroneagative and have no redness or swelling to speak of. Sometimes I question my diagnosis which was based on my response to prednisone, symptoms, and an MRI of my hand. I have also been diagnosed with Fibromyalgia. I have tried plaqunil, methotrexate injections and Arava with no improvement. I am taking a break from the immunesupressants to address numbness and tingling in my extremities but Rheumatologist wants to try a biologic next.

    Reply
  • April 28, 2018 at 4:15 pm
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    In April 1976, my RA was diagnosed in my right wrist. There was a sizeable lump in the top of my right wrist, and I could not put any pressure on my wrist. It was just as if it was fractured or broken.
    I went to local ER, thinking that either it was cyst, which you could just smash with a book and it would go away, or maybe I had slightly fractured it somehow. They took x-rays, and ruled all that out. They referred me to the San Francisco Marine Hospital, for further diagnosis. I saw an orthopedic specialist there. He was very nice and cheerful, and then when I next went to see him for the results of all the x-rays, lab-work, and tests, he came in and angrily glared at me, and snapped at me: “You have Rheumatoid Arthritis!!, a severely crippling disease!!”, like as if I had gone out of my way to steal it from somebody else for myself. I was very shocked, and said “You’ve got to be kidding, nobody in my family has that!”, to which he replied, “Well! If you don’t believe me, go down to the library and look at all the pictures in the books (implying I was too stupid to intelligently read). He then referred me to his associates for confirmation (I wasn’t trying to argue with him) and wouldn’t see me anymore. I did look at the photos in the books, and shut the book and put it back on the library shelf. It’s been 42 years, and I can still walk, so far so good. In the meantime, it went from my right wrist to my right fingers; then to my left wrist to my left fingers, then to my right elbow, to my left elbow, then from my right shoulder to my left shoulder, then from my right knee, to my left knee, and same with hips, and feet, and now it’s in my spine, and sacroiliac. I’ve also developed Fibromyalgia. It seems connected to my gut, and what I eat, and has become problematic that way.

    Reply
  • May 20, 2018 at 1:48 am
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    I was recently diagnosed as of late April this year but I recognize so may symptoms mentioned that I’ve had for years. Pleurisy was the real clue to me something was wrong. I’ve had it before,and it was always my asthma “triggered by a cold” I never had. Shortly after stiff and painful swelling feet,starting in one leg going the next. Now extreme pain and swelling..I am learning quickly this disease is one to reckon with.I have a 10 month old and can barely keep up…

    Reply
  • May 22, 2018 at 10:33 am
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    This is my first post and I am afraid it may be lengthy! In this battle of RA I am totally confused. I have pain and lumps on my fingers and toes. I get swelling in the bone behind big toe, knees, ankles, elbows, wrists and back. Have been to one rheumy who said I have significant OA for someone my age. I also have gelling in my legs (severe tightness) which generally only occurs in patients with RA. He performed an ultra sound on my hands and although I have deformity and bone damaged on several fingers and wrists he saw inflammation but it did not meet the protocol for an RA diagnosis. My GP who has sent me through all of my flare ups etc insists I have RA. I also have 2 other autoimmune diseases, pernicious anemia and hashimotos disease. MyGP feels I have seronegative RA. GP sent me to another rheumy who said he felt I had palindromic RA and prescribed plaqunil which affected my stomach and I could not take. He then suggested prednisone for 2 days when a flare up occurred. I felt this rheumy was brushing me off as he never called back with test results etc. Meanwhile my GP kept insisting I was not taking this disease seriously and wanted me on methotrexate and folic acid. I have begun this regimen and do believe I feel a little better but still have tough days. I am so disheartened and confused. I am exhausted a lot of the time and wonder am I doing the right thing? Any insight?

    Reply
    • May 22, 2018 at 4:15 pm
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      Dear Janice,
      I’m sorry you are not getting clear answers yet. Unfortunately rheum docs vary widely and they diagnose using subjective criteria. Unless they examine a joint while it’s inflamed, they won’t “see” disease activity. And early on, many do not have positive blood tests. There are some newer antibody tests and the Vectra that can sometimes pick up disease activity the other tests miss. (Link to blood tests is in my TAG list of topics or use my search box.)
      It sounds like you have a good GP though and I’m thankful for him. Sometimes they see you over time and can recognize the swelling or the changes that a rheum doc can’t see. Partly it’s that the disease IS confusing. And partly it’s poor training.
      Please don’t give up. Even if you need to try another doctor. I’ve been there—many of us have. You aren’t alone. You didn’t mention your age, but the widespread nature of this swelling and other problems makes OA less likely. Keep records if you have any fever, rash or anything. Take photos of swelling in case it subsides. Keep learning and hang in there. Here’s a link to Palindromic RA so you can see what that means (basically early RA). http://www.rawarrior.com/tag/palindromic-rheumatism/

      Reply
  • May 23, 2018 at 11:56 am
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    Thank you Kelly for your positive remarks and support. I always hear follow your rheumy’s advice but he and my GP have somewhat disagreed and it has been confusing! This condition follows a different path for each person it appears. Again thank you!

    Anyone else out there have a similar story?

    Reply
  • August 11, 2018 at 6:00 am
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    I’m not sure if this is still active but figured I’d still leave a comment. I’m 33 and I feel like I’m 83. In the mornings for the most part but now I’m not sure if its weather effecting me or whenever the mood strikes I have a hard time going down my stairs. I’m constantly cracking and popping and sometimes its relief for a few moments of the pain. I am so stiff in my ankles and feet. Since I was in my teens my feet and ankles always gave me hard time to the point Ive been unable to walk, I go to the hospital I get told its tendonitis and sent home. Tendonitis doesnt make the tops of your feet hurt or it might I’m not a dr. I have bunions now and my toes are curling ? Downward. And now its my left hand, I’m right handed but my left hand no strength sometimes I drop everything and it is a constant ach when its acting up and its goes into my wrist, elbow, shoulder and like collar bone…. My mother has Fibromyalgia, RA as well as Phroysis that is now Phroysic Arthritis. I don’t have a family dr right now I’m on an orphan list for one and reading these comments and this forum makes me feel like I hope once I get one because Ive stopped going to after hrs clinics and the emerge because I’m treated like addict honestly I don’t want pain pills cant take em too hard on my stomach. I want to be awknowledged, diagnosed and not basically told I’m too young to be going threw these issues. So I thank u 😊

    Reply
  • September 1, 2018 at 1:59 pm
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    When I was in my 40’s, I had uveitis, had to go to orthopedic for shots in shoulders, feet, had multiple intestinal ills, diagnosed as irritable bowel disease. All of that led up to a huge flare up and now diagnosed,finally!

    Began methotrexate and on methylprednisolone and it is beginning to show improvement. So frustrating that it took so very long to find out all along it was RA!

    Reply
  • December 27, 2018 at 7:01 pm
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    Ok so here I go: I am 53 now. I first started noticing the symptoms in my feet and heals about 26 years ago, I was a runner and a mother of 5 kids and within the next 10 years became unable to run for fun or run after my kiddos. Then having to have cortisone injections in my feet alternating every other month and a half, back and forth between my left and right feet. There were times I had to crawl just to get to the bathroom in the night the pain was so bad. The constant fatigue was so relentless as I tried to raise my 5 kids, some day I couldn’t get out of bed. Then the pain hit my shoulders and hips and a GP sent me to a rheumatologist as she suspected RA. The rheumy did the usual sed rate test and said “nope, you just have bursa problems (bursitis)”. And he gave me cortisone injections in my shoulder. I never felt good about his diagnosis. Then due to the fatigue I was diagnosed with Chronic Fatigue syndrome and by now I’m dealing with raising teenagers. Yep pain and fatigue is super fun with teens, lol. I was put on Human growth hormones and tons of other crap like internal cortocosterioids, which gave me some relief but ended up making me huge from the steriod weight after 2 years. I felt like I tried every thing, I just learned to live with the fatigue and pain, I actually got pretty good at it having to survive on adderall for a stimulant for the fatigue and brain fog, and tons of gel ibuprofen to take a tiny bit of the edge off. Then just 2 years ago I started having pain in my hands, wrists and weakness in my body that caused me to trip and fall a lot, thus creating a few ER visits. So somehow through my own Dr. Google research I ended up at a Rheumatologist again. Fortunately he did every test he could think of and then diagnosed me with RA; Vectra was high and sed rate was high…lots of inflammation. Now I’m on MTX and Folic acid with diclofenac in morning and at night. But now am dealing with the awful side effects of the methotrexate injections. Like that fact that after breaking 3 back ribs from tripping on something, flying into the air and falling down stairs, my dumb ribs won’t heal after 3 months of babying them. I keep waking up in the night on them and yippee-kayay SNAP they are broken again and over lapping now. I want to get off the methotrexate for a while so they can heal but the RA doc says no. I’ve had a constant intestinal Candida outbreak since I’ve been on the MTX (the whole digestive system from mouth to anus, yep, yikes! super fun! NOT REALLY!). But the good news my hands are finally not swollen and hurting and I can bend my fingers and make a fist again. My shoulders and feet are still sore but I guess I need to be patient. But I’m not sure what is worse the many symptoms from the meds or the pain all over with out the MTX. I’m so confused and frustrated. Anyway there is so much more to my story but that is the just of it for now. Any advice on the rib issue not healing or the side affects of the MTX would be appreciated.

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  • February 1, 2019 at 3:50 pm
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    broke my back when I was a kid. so back pain is normal for me. first noticed what is now R/A in my right shoulder, then it went to my feet and made walking almost impossible…. along with the flu like symptoms. Took about 6 months before they had me checked for R/A…. bingo! you got it dude. started treatment and have not had any bad flairs in 4 years.. im blessed.

    Reply
  • March 9, 2019 at 2:17 pm
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    My RA started in my ankles. The pain was extremely sharp like hundreds of razors slicing my ankles. To unbearable to even stand! But because I also have MS, I have a wheelchair to use. The Rheumatologist gave me some meds that allow me to stand and even helps the MS so I am able to stay on my feet! When the MS flares up the RA also gets worse! I am on day 2 of another flare up!

    Reply

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