What Is the First Symptom of Rheumatoid Arthritis?
Officially Sanctioned RA: The First Symptom of Rheumatoid Arthritis (UPDATED 2016)
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:
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 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:
- Sympathy and Living with Rheumatoid Arthritis Symptoms
- My Quest for Answers to Questions About Rheumatoid Arthritis
- Weathering Rheumatoid Arthritis
My daughter has systemic JRA. She was diagnosed 5 years ago at age 13. Her first symptom was pain in the bottoms of her feet. Within a month she had fever, painful welts, streaking salmon rash, enflamed liver and spleen, and painful joints all over. To this day, her ankles are her most effected joints. Wish I’d known back then what pain in the feet could mean.
thanks for being here for her Heather. I’m a mom too – I can’t imagine what it must mean to deal with all of this evil disease in your precious daughter. Sometimes my kids have shown signs so it’s my worst fear. My heart goes out to you both.
My right eye. Scleritis was misdiagnosed for years but eventually diagnosed when I relocated. The new Opthamologist is the one that first mentioned RD. By then I could hardly hold a pencil and was told years prior that this was osteoarthritis, had been through two rounds of stress tests and angioplasty as well as neurological testing for chest pains, had dealt with TMJ, had had surgery for GERD, had been diagnosed with depression because that was the “only thing that could explain the exhaustion and lethargy,” and 16 years had passed.
And I forgot to mention that by the time I was diagnosed I could barely stand because of the pain in the heels of my feet and climbing stairs took every ounce of energy that I had, breathing was extremely difficult.
Newly diagnosed and quite scared
Mine started in the bottom of both feet. I do long distance endurance cycling races in the mountains and when I went to a foot surgeon he said I needed to have bunion surgery on both sides of each foot. I even specifically said that the pain was not in the big toe but rather on the ball of my foot. I mentioned that I needed to remove my cycling shoes and massage my feet before I could continue. I had both surgeries last year in September and October with the hope that I could perhaps even run again. ( I use to be an elite Triathlete) Running never happened again but I could cycle with the help of a steroid shot. My foot surgeon never even suspected RA although the x-rays showed arthritis–he said it was normal. I’m a 51 year old female so it was not hard to believe that it was osteoarthritis from many years of races. I started to then have severe pain in my shoulders when I was racing my bike. Again I shrugged it off. I developed more pain in both thumbs and ankle and went back to see my foot surgeon and he suggested I now see a Rheumatologist. This doctor said I had bursitis in my shoulders but not too worry about my hands. Several months later I woke up one day and could not make a fist or hold a cup of coffee. Scary stuff. After a week of this I finally went to a hand surgeon. I had done a lot of my own research before I went to see him and felt it could be RA. He literally laughed at me and said I was scared to grow old and it turned into a psych evaluation. He gave me hand cream and told me to take salt baths and to stop riding my bike. I told my general house doctor that I wanted to see a different Rheumatologist and he was of little help. I called many on my own but they wanted a written letter from my house doctor before they would take me and that the only opening they had was over a month away. I went to my old Rheumy and demanded an MRI for my hands. I then called the new Rheumy and asked if I could send the MRI results to them to see if they might be able to get me in sooner. She called me the same say and said that the doctor said I couldn’t wait another day. I went in the next day, December 14th and on December 15th he put me on 5 mg of Prednisone, 5 mg of Methotrexate. He said that I had a very high anti CCP test which indicate poor prognosis as well as the MRI’s indicating erosions in both knuckles of the middle fingers. I was on this treatment for only one month and he has now added Humira to my treatment as he wants to be aggressive and not to wait the standard 3 months before starting biologics. It’s all been a little too much for me to wrap my head around and I have found that I must do most of my own research and really push for tests, etc. It’s hard when I feel I am not qualified to know what to do and it’s always more comforting when the doctor has most of the answers for you. But I will not stop researching and keeping track of everything and demanding to have all of my tests results so I can help my doctor figure out whats next. I do not know where all this will lead and not knowing is the scariest part. My life has changed completely from one day to the next. I’m ok with not racing my bike again. I’m just scared that I may not be able to ride for pleasure in the mountains as this disease progresses or to even just live a somewhat normal life. I must find some peace and acceptance and find the strength though all of you to keep fighting. If you are new to all this like me I hope you find a good doctor and you continue to do a lot of your own research to help them. I am so grateful I found this sight. it is a wealth of information and I have learned so much in just one week. Thank you so much for being here.
First symptom was in my feet. Felt like I was walking on bruises. That was 34 years ago.
I am 20 now and i was 15 when it started. I felt it in my hands when i played volleybal, it hurt so bad. Then the next week my feet were swollen and i could not walk normally, it felt like walking on glas with bare feet. RA sucks. Still struggling with medicines, hair, teeth and skin. X
My RA started in my knees. I was working hard at losing weight and walking/running a lot. I thought I injured my knee. Saw my orthopedic doctor… Three gel injections and two cortisone shots later, I was still in pain. it would come and go, and then the othe knee started hurting. That’s when my ortho recommended bloodwork and then sent me to the Rheumatologist. I was diagnosed officially about 2.5 years ago.
thanks for sharing Casey. That was a good ortho & I’m glad the bloodwork was able to get you diagnosed.
My first symptoms of RA were in my feet. In my early 20s, I started having foot pain and was tested for autoimmune diseases, but was not diagnosed. Later, I had extreme pain and was told it was plantar fascitis. I would have this pain and stiffness come and go for years, at times lasting months, but never diagnosed with RA. I also had hip pain and severe carpal tunnel. I was not diagnosed with RA until it attacked my fingers. I believe I had RA for many years befre dagnosis. I believe our Drs. Need better education on RA so that people can begin treatment much sooner.
Thanks Lisa. It look like hundreds hear agree with you. Until it is the fingers and it “looks” like a picture in a textbook, it’s nothing or something else, not RA.
I can go back to hip and shoulder pain for years. This went undiagnosed from first complaints in 2008. Dr had suspected lupus but that ended up in a dead end. Like others here, I felt like I was walking on a bruised foot with tenderness at the middle of the ball of my right foot.
January 5, 2016, I woke up with really achy, stiff hands. I thought that perhaps I’d been clenching my fists all night long. Each following night, the achy hands would wake me, I’d toss and turn all the while carefully stretching my fingers, reassuring myself that I wasn’t clenching. By January 9th, after a horribly painful night, I woke to find nearly all my fingers swollen, stiff and warm. It took hours before I could safely drive. Pain so severe I made a next day appointment with an on call Kaiser doctor (on a Sunday) The next day, the swelling continued. I expected him to pat me on the back and send me on my way but he suspected RA. He was compassionate and ordered tons of blood work and referred me to rheumatologist. The rheumy appointment couldn’t come soon enough. I felt like the fingers were dislocated. The worst aching I had ever experienced. The appointment was on the 12th (last week) and he showed me my CCP–254.3…Even though the RA factor was negative, he said this test was definitely conclusive. Started me on Plaquenil and we start this journey together. I’m still in that phase of thinking….”Is this really happening?” I’m 59 years old. Now I look back at hints that my body was probably giving me over the years. I have two small nodules (one on each wrist in the exact same place) that I’m going to ask him about when I have my followup appointment next month.
My very first synptom was Extreme Exhaustion, and knee/ calf pain. I worked with my P.C. for close to a year. He kept sending me to different specialists. They wer finding some things, but No diagnosis. I really thought it
was Extreme Chronic Fatigue. I found out it was diagnosed by a Rhuematologist. I asked to see one.
On my first visit, I had written out all my symptoms. She had me go take the 21 blood tests- (only 6-7 vials of Blood). After she got the tests back, I came in to hear the News.She spent all of 5 minutes with Me. She looked at my hands, and asked if they hurt Me. I said, not much, but the Exhaustion I have is about as Bad as the Pain/Aching.She said, Yes. Then she started walking out!! I said, Are you sure its R.A., couldn’t it be Chronic Exhaustion Syndrome???? She said, No, everything tells me R.A. I said,did I have the R.A. factor in my blood. She said, No, but that’s not unusual in early to Moderate R.A. Then she said, Just take the Methotrexate as prescribed and you will be fine, Out the Door she went. No Instructions, No advice, No warnings about the Meds, also prednisone, and Folic Acid.
Anyway up to now, I’ve not taken the Methotr
I hit a trifecta – first gout when I was 33, then RA 10 years ago and then 1 1/2 years ago, it was lupus. I don’t know where on stops and the other begins; but I am getting seriously close to the end of my tether.
I hear you. Hang on. Don’t give up. Don’t let it win. Fighting on is our only choice.
https://www.rawarrior.com/live-like-warrior-3-lessons/
https://www.rawarrior.com/perseverance-in-fighting-rheumatoid-arthritis/
https://www.rawarrior.com/stages-of-rheumatoid-arthritis-heartache/
I was in the process of being tested for a morphine pump to ease the pain in my spine. I have numerous herniated discs, Fibro, CPS, as well as other spinal issues. Days prior to being tested for the pump, I woke up one morning, slid out of bed and nearly went down. My left foot, including ankle, heel, all of it, was so swollen and trying to stand, well, the pressure felt like I was crushing all the bones in my feet. That was when I was told by my pain mgmt. doc to get tested for RA, which obviously came back positive. However, 20 yrs. prior to my affirmative diagnosis, I was working for EMS, hurt my back and was put on an anti-inflammatory drug. Long story short, several docs thought I was having a reaction to the drug when my platelet count plummeted and I had to be hospitalized for a week. Turns out, my antibodies were destroying my platelets! I guess at that time there wasn’t the definitive means of diagnosing RA, as there is today. Knowing what I now know, I’ve had RA for many more years than I ever knew. I still have so much to learn about my disease. But one thing I know for sure, is that ‘your RA’, is not ‘my RA’. We may have many similarities in our symptoms, but I doubt there are any two of us with ones that are identical in nature. Incidentally, I was also tested for Lupus, which came back negative. My paternal aunt died from complications from her Lupus. Just prior to my RA diagnosis, my younger sister was diagnosed with Lupus, though she rarely displays any symptoms and when she does, they’re mild in nature. In the past year, my daughter has also been diagnosed with Lupus. It’s a long story, an oddysey, really, that I won’t go into unless asked, but I know exactly what happened to Glenn Frey. The RA drug I was on, as believed by 3 different docs, caused two tears and ultimate ruptures of my large intestine. By the time they figured out what had happened, and got me into emergency surgery, I was septic and spiked a very high fever. As we used to say in EMS, I was “swirling the drain”! In a matter of hours, the sepsis would have traveled to my lungs and killed me, as it did Glenn Frey. I know what he suffered and it hurts me to think of another human suffering in that way. I wish I were wealthy and I would spend the rest of my life, whatever is left of it, advocating and supporting research on this dreaded disease. I would in effect, drive a stake through the heart of RA!
I first identified RD in my right wrist, but my really first sypmtom was serious depression. My Physician said that is common. Please respond. I was diagnosed at 17— 46 years ago. I have also heard that anger can play a role in RA. Stress and anger played a big role in my diagnosis. Also my diagnosis is genetic. I had a sibling diagnosed. I am on the mend. I identified my passion and I am taking Remicade. Miracles do happen. Please respond. Am I alone?
Thanks for your email.
Pat Young
My 1st symptom was that my R pointer finger swelled up like a sausage and was so painful I could not hold a brush, pick up my purse, open a door, hold a coffee mug, etc. Blood work revealed a high titer of anti-nuclear antibodies and an ANA screen was positive for Mixed Connective Tissue Disease (MCTD). One rheumy diagnosed RA, another suspected Lupus (because only 1 hand was affected), and a 3rd wondered about the possibility of Rhupus. Three years later, a 4th rheumy settled on MCTD but has not ruled out RA and Lupus (is waiting on that 4th symptom to make a definitive clinical diagnosis). More joints/organs are becoming involved (wrists and feet and I now have pulmonary hypertension). I have been on Plaquenil all this time, which appears to be working and yet, my rheumy suggests getting off it because it can cause blindness after 5 years of use. I have joint pain all of the time somewhere, as well as nerve pain in my legs (lower back issues and sciatica), and extreme stiffness all day long. I cannot sit, stand, walk or lie down for more than 15 minutes without having to shift my weight. Overall, I am better off than most, so I count my blessings. Hugs to you all.
For myself, my most apparent first symptom was excruciating knee pain, along with swelling of the knee. I’ve had this knee pain for over six months and just got a diagnosis, this week, of RA. While the doctors were attempting to diagnosis me, my entire right side became painful. I know they say you normally get RA bilaterally (affected a joint on both sides), but only my right knee, following my right shoulder, right wrist, and my right hand. I’m a nursing student and only 23, too. Also, the only odd blood test was my rheumatoid blood factor that was very well elevated. Thanks for reading.
I’m a nursing student and only 23. My first apparent symptom was excruciating knee pain over six months ago. However, my ophthalmologist noticed eye inflammation so I wonder if that was truly my “first” symptom. It started off with the knee pain and as the doctors were trying to diagnosis me, my entire right side became painful– my right knee, right shoulder, right elbow, right wrist, & right hand. No pain in the left side but my MD says that there is slight swelling, but not comparable to my right. The only abnormal blood tests (out of a ton!), was my rheumatoid blood factor that was very well elevated. Nothing else, not even my sed rate, was elevated. I was just diagnosed earlier this week and started Plaquenil. The joys…
My daughter at age 36 began having stomach problems so she limited her diet to bland foods. She had bouts of fatigue. Some upper back pain and episodes of shortness of breath. Over a period of 3 Months she began to have an increase in symptoms, all of which she was seen in ER’s, doctor’s offices and instant care facilities. Never getting a clear answer.
Then, over a period of one week she became weak and then suddenly paralyzed from the waist down including numbness in her chest. One unusual symptom was she had a sustained heart rate about 150/minute which stayed with her for months.
All the obvious diseases were ruled out. Over the next few months she slowly improved and before regaining the ability to walk, her elbows and knees became inflamed. She was given the RA (severe) diagnosis with damage in both wrists. Was told she probably had it for 10 years or more.
During that hospitalization, it was discovered she had a thoracic aortic aneurysm. We were told it was directly related to the RA.
She has been on the highest dose of methotrexate with some decrease in inflammation. About 2 years ago the disease appeared to be getting worse so she was placed on Sulfasalazine, which is helping
It has been 4 years now. The problem is, she has experienced only mild to moderate pain and has a false sense of not needing her medication. About 5 months ago she stopped taking her meds and her labs are now showing inflammation at the highest it has ever been.
I’ve been having trouble with my right foot for years and yet still I’m not yet diagnosed with RA but could swear that I have it. I have fibromyalgia and Hashimoto’s and was told that I have at least 1 or 2 more autoimmune diseases and my joints in my hands and feet hurt so badly as well as knees, hips and spine. My rheumatologist told me that I’m too young for RA. I’m 41!!! I’m frustrated! ! And in horrible pain!!!
I was Diagnosed at 30 years old with septic Polly RA. I was very ill and after 3 hospitals in 3 months my mother took me to a specialist. I ended up in Houston next to MD Anderson.
I was told I had blood clots above my knee which was swollen as big as a cantaloupe and right hand and fingers big as ball park winnies had a spot in the middle of my back and upper neck. I ran fever of 102 and white count was 38,000 they put me on chemo and said they needed to kill everything in my blood and have it start over and hope it would go away. this took 2 years I had to learn to walk again. then it hit my big toe’s and ankles and the end of my feet swelled up to big for my shoes.
after my feet then my hips and neck and other knee and both feet.
after my feet got better I had 3 heart attacks after a lot of test they said RA had attacked a valve in my heart and said it could attack my brain.
Now I’m 55 and I thought it was gone, at 54 my left lung collapsed and was taken to the ER. After CT they told me I had all kind’s of lung disease and nodules from RA one had ruptured and made my lung collapse.
I went back on chemo and 20 other drugs then my hands wrist and elbows and shoulders and hips got so bad I could not walk, this is what they had told me when I was 30 that in 10 years I would be in a wheelchair and when I get older the type I had would have a bad flar and this is what I would die from WOW!!! Really? not good.
My Elbows are the worst now my arms I can’t straighten them out or stretch or pick up a 16oz bottle of coke I have to use both hands.
I wish I could get better- I had a pain pump implanted this helped my back and hips a lot, but my elbows kill me and can’t hardly do anything but a least I’m walking but barley. I inject myself with Methotriaxate nuclear medication and inject testosterone Prednisone and other roids and I take a bag full of other drugs. Nothings helps the pain I wish there was something that would help. My Doctor wants to do infusions but she said I could get cancer and it could get out of control and then they could not help me. Please someone help I need suggestions.
My first symptom of ra was in my feet. It felt like I was walking on nails. The pain would get so bad I had to sit down after awhile. It took 5 years to diagnose my problem as ra. I had a very bad flare last year. When i went to my rheumatoligist he said oh you are having a flare, like it was nothing. My flare had lasted a year and a half. Since then it has moved to my hands, ankles, knees,wrists and elbows. It got so bad I thought I was going to die, so i called the va and told them at rheumatology that I felt terrible, I was so tired and weak when they said to go to the er,I told them I couldn’t. I didn’t want them to think I was being a baby so I didn’t call the ambulance as they suggested. The va is a whole different animal sometimes they laugh at you and crack jokes when you go to the er, You can hear them at the nurses station, like you are making things up. I had an appointment in two days so i waited it out. When I went to the doctor he gave me two prednisone shots and put me on methotrexate along with the plaquenil, plus prednisone. Since then I feel so much better, the swelling is going down and the pain decreased by 90%. I was wondering if anyone else has been swollen for over a year, and if they got cramping in the ankles as the swelling was going down.
3/16/2016 Date of Post: RA Onset 10/24/14 @ age 54 FM. I believe my RA started several years before the actual onset date. For several years, I had experienced fatigue which I had for years and continues, tingling and pain in my hands, feet, face, and blurry vision that would come and go. I was treated for what was thought to be Bell’s Palsy on 2 occasions. I had a MRI to rule out Multiple Sclerosis since I was in my 40’s at the age it can develop in women. Negative results thankfully.
My first noticeable symptom of RA was Oct/2014. I stepped off a curb and felt like I had a pebble in my sandal. I stopped, nothing was there. I went to bed with moderate pain in the ball of my left foot. The next morning my foot had flared up (I didn’t know the meaning of flare yet).
One of the next few days, my right wrist hurt badly, along with the left foot. I went to Urgent Care; diagnoses tendonitis. Within a couple days, my left ring finger flared. I kept it on ice all night and used every oil I could find, nothing worked. I had to have a ring cut off that morning. Again, within a day or two, my left pointer finger and right pinkie was swollen and so painful I ended up the ER. They said I definitely had RA.
Nov/2014, I started treatment by a rheumatologist who said it was not RA because my RA factor was 13. 14 was the magic number. He had me on 40 mg of prednisone, but I was still experiencing pain and flares. I had feet, hands, knees, back, elbow and neck pain.
I found a real RA doctor Jan/2015, and was diagnosed and treated for moderate to severe RA. He wanted to be aggressive with treatment since 3 months had already passed. The earlier the treatment the more chance of stopping the progression of the RA from doing permanent damage to the joints.
I started with 10 mg of prednisone and methotrexate, a low-dose cancer medicine even though I didn’t have cancer. That was extremely scary. Within a couple weeks he had me start on the DEMARD Embrel. After 4 months, I was still experiencing flares and we switched to the DEMARD Orencia. I’m on my 4th month of Orencia and it appears to be controlling my RA.
My last doctor visit 2 weeks ago. This appointment was my 1st one that I showed no evidence of swollen joints. We decreased the prednisone to 5 mg, and because of severe “Brain Fog” we are doing a trial month of stopping the methotrexate.
Since stopping the methotrexate and decreasing the prednisone, I do have some swelling and stiffness in my hands. The brain fog has lifted quite a bit. Overall, fatigue and a good hour of morning stiffness are still my worse symptoms.
At for the first symptom in the ball of my left foot on Oct/2014, I have not stopped having moderate to severe pain in my foot I saw a orthopedic surgeon. He had me go through physical therapy to narrow down the exact area of pain. It was determined I had a Morton’s Neuroma, classic symptoms. I had surgery to remove the neuroma Jan/2016. I am just getting over the recovery from the surgery. Unfortunately, that fricking pain is still in the left ball of my foot. It feels like a large pebble now. Hopefully it will decrease. I’m not sure where to go from here.
I’m thankful I have rheumatologists who are experts in their field. I feel confident that I am receiving the best treatment available.
Hi all. My mom also started at the feet. It was Severely deformed in a very short time. Her whole body also aches and her hand get very stiff sometimes but the feet were the worst. The bones started coming through the skin. She had to get it clipped and her toes broken to realign them again.
I first saw a doctor because my hands hurt and she found and elevated ESR. High enough she sent me to the Rheumatologist. X-rays showed deterioration of bone in my feet indicating the disease likely started there. I have been told I have an abnormally high pain tolerance so now wonder if my RA started long before diagnosis.
I would say you have JRA because you were 15. I was 9.
Mine did start in my hands…one thumb then both middle and ring fingers. It was hand limited for a long time. I have polyarticular JRA.
There are different types of JRA…polyarticular tends to strike hands or other small joints first…pauciarticular/oglioarticular tends to start with large joints like knees and eye inflammation and is limited to few,joints…and systemic is characterized by high fevers, rashes, sudden arthritis and organ problems.
I had allergies arise when I had never had them before and they were causing frequent ear infections like a lttle kid. Next I thought I had the flu for 2 weeks straight but my fever never got above 100 degrees. Finally, I am a pianist by profession and I could not perform a simple scale due to stiff joints, especially the thumbs-they were both swollen and red. That finally made me get serious about finding a solution!
I don’t know if you will get this in time because it is now 2016 but I hope that you are no longer taking in domicile it will hurt you kidneys
Mine started in my shoulders and ankles. It has never affected my hands, ever. For that I am grateful. I’m a crafter, and I need my hands. 11 years in, and now I have RA-Lung. And still my hands go unaffected, it even hurts in my jaws sometimes. If it has to be, I am blessed even in RA.
I’m amazed that you are diagnosed with your hands still not affected. I hope that lasts a long time.
First, I love your comprehensive blog. More information here and links than any other I have discovered. I was diagnosed with RD in September 2015. But, I had symptoms my doctor considered to be other things or said “just take vitamins and eat healthy, get more exercise.” I already did that and left with question marks over my head.
The first symptom I saw my doctor for was exhaustion. For about 6 months prior to the first pain, I would be so exhausted, even after 8 or 9 hours of sleep, I could hardly function. Some days better, some days worse.
Then I had unbelievable pain in both shoulders. She diagnosed it as impingement due to inflammation. Advice: take Advil, do the exercises. Come in for a cortisone shot if it doesn’t go away. She thought it odd impingement would hit both shoulders at the same time, but did no further testing. Thankfully that suddenly went away.
Then I woke up with horrible pain in my jaw. Could barely clean my teeth and eating anything with more chew than applesauce was beyond intolerable radiating pain. That time I was diagnosed with TMJ – got the mouth guards etc, but the dentist specialist said it was so unusual as I have trouble closing my mouth, and most TMJ folks have trouble opening. Unfortunately, trouble closing my mouth completely has continued, but the horrible pain is gone.
Then on Sept 23 2015 I woke with hands I could barely move. It progressed to my feet and ankles. Back to the doctor. It wasn’t until the pain hit my hands and feet that RD was even considered by my primary care physician. Blood tests were taken then and RD factors they checked were all out of whack.
The Rheumatologist she sent me to connected all the dots and told me I had been dealing with the disease from the first day of feeling exhausted.
That is my first symptoms story.
Bless you in all you are doing. And, I am praying for all of us that are warring against RD. Found that prayer helps immensely as I walk through this season of life.
With JOY to you in your journey,
Cheryl
Very common experiences unfortunately.
Thanks for taking time to share.
Ive been diagnosed with ra since 2005.it started in my hands and feet.i just had the worst flare ever had.ive been in bed due to swollen knees,bare can take few steps to bathroom.this has been going on for a month. How long do flares last? Im ready to get up and walk, but everg time i walk my knees both sewll back up and im back in bed.what to do?
So-called flares can last a few hours to several decades. https://www.rawarrior.com/what-is-a-rheumatoid-arthritis-flare/
The term flare describes a worsening of the disease, assuming most of the time it is quieter. However that only describes the disease pattern of certain patients. The disease can also become more or less active over time in the same person.
What you’re describing is increased inflammation after activity – which is very common. If the inflammation is persistent, activity can increase it. For example, when I fix dinner (the best I can), the back of my hands turn red. It’s already slightly swollen, but when I use my hands, it gets worse.
My first symptom was Uveitis about 10 years ago which prompted blood test for a high RF and high anti ccp. A few months later i developed slight swelling in my hands and toes. Methotrexate was used but because of a well informed opthamologist/ rheumatologist I was put on Humira . I went into remission for 7 years. I stopped taking the meds about 5 years ago and now the RA is back 10 fold. I start back on Humira soon. Right now im on Plaquenil and pred. I should also mention that i wa dx with discord lupus 30 years ago.
My first symptom was Uveitis about 10 years ago which led to blood test showing high RF and anti ccp. No symptoms of arthritis in my joints. Followed by a rheumatologist who told me that I would prob never get RA and it was mind over mater. About 4 months later I had joint symptoms and was put on methotrexate. My Uveitis DR insisted that I start Humira and I took this for two years with complete remission of all symptoms . I stopped the meds and stayed symptom free for the next 5 years. Now I have RA symptoms for the past two months and it is much more painful than it was 10 years ago. I am on Plaquenil and prednisone awaiting to be approved for Humira.
I’m still reluctant to say ” my RA” since my blood tests were neg. This article sounds exactly like what happened to me. About 10 years ago my toes began to shift and hurt .it happened quite quickly and to both feet .They would swell and the deformity has made finding shoes impossibly difficult and walking more so. I am having foot surgery to fuse bones on arch of right foot next month . I just started metotrexate and after 3rd dose recently ,I have not felt well ,tired sleepy and Nauseous. I am currently having swelling and pain in right hand ,left elbows,hips and always knees. Last year I was diagnosed with AS because of xray of cervical spine .The blood test for AS was neg. Also. What if I don’t have RA or AS and I am taking methotrexate??
Doctors are very careful with diagnosis because of your question.
The low dose of mtx does not usually cause harm, but it has to be monitored carefully including regular blood tests of liver function.
This sounds risky but early treatment can prevent much more severe disease, so maybe a second opinion would help you decide.
My first symptom was a huge flare. I woke up July 4, 2015 and could not move without extreme pain all over my body. White blood cell count was 26,000 and my sed rates were over 100. I had fever, joint pain, and extreme fatigue. It took me 3 hours to get dressed to even get to the urgent care. I fought for 8 months to get into a rheumatologist who diagnosed me within 4 days.
My very first symptoms were
1. It felt like nails were being hammered into my heels
2. Really dry eyes upon waking. ..like sand in them.
3. Horrible stiffness after waking in the mornings
4. Severe fatigue. I was told it was the flu. I knew it wasnt. I could not walk across the room and I am extreme fit.
5. Bilateral pain in elbows and wrists.
6. Inflammation in the pericardium of my heart.
My Internist is just incredible! I ask him one question, when my daughter was at her app with him…
“why does it feel like I have spikes in my heels in the morning?” I had ask at her previous appt….about the fatigue and stiffness….He sent me for the anti nuclear antibody test. I mean he was Gregory on the spot. I didn’t have insurance at the time so I started on methotrexate immediately and a steroid dose pak. It took two does pass to calm the symptoms…then it was pretty much just a few flare ups over the next 8 years and low dose of methotrexate once a week. I tried plaquinil…and it dropped my blood count to nothing in 22 days…and free that my body was a wreck. Then I had some serious trauma to my body under insane stress and in the end I had a super infection with a GI bleed…very serious. The super infection was after S. Malticilus…In my lungs after back to back double pneumonia.. now i just catch everything. It is seriously annoying. I try to pace myself very carefully. It does not matter what I do…..I get sick at the drop of a hat. I’m hoping this runs it’s course and I don’t become a waste of life.
I can’t go back up…but right before this my 25 year old son died from a TBI he got while on tour in Iraq. He did two tours. Then my dad died less that 7 months later. It was horrible. My Mother was my responsibility and she became psychotic….she caused so many problems constantly. I wanted to care for her and enjoy her company for her years she had left. It became evident that wasn’t going to happen and then….I had the stress and trauma at the hands of my Mother…. I almost died three time within 4 months. It has taken a toll on me but I still have a good fight left in me. I never really believed I had rheumatoid arthritis but I do. Now I respect it. I had rheumatic fever when I was 6. Spent a year taking pink liquid penicillin and could not run and play with the other children.
When I got well I made up for it but if I wore myself down as a child I would get really bad sick with pneumonia and other infections…. my childhood was very stressed with an alcoholic Dad..hope this helps
My mother and grandmother both had RA. My mother used to tease me that she was “crawling” after I was born because she couldn’t walk. I used to make fun of her and say she was being dramatic…… Until about 2 weeks to a month after my daughter was born. I had exquisite pain at most of the tendon insertion sites of my upper and lower extremities. From there, carpal tunnel bilaterally that “came and went.” This was unusual because CTS is progressive without treatment. I didn’t realize until I became a seasoned nurse practitioner that RA related CTS will come and go with flares and remissions…. makes sense ha? Typical CTS is a compacted compartment. RA related CTS is caused by inflammation of the wrist “pressing” on the carpal tunnel. I also have bad elbow pain and get ulnar neuropathy frequently.
By my early thirties I had bilateral shoulder joint erosion and I can’t lift my arms above my head or they “freeze” there and it is extremely painful to bring them down again. Dry, burning, foreign body sensations, floaters, and blurred vision were also very early. And, I had a complete set of dentures by the time I was 40 from progressive decay. I have sjogren’s on top of, or secondary to, RA which accelerates this process.
Now the clincher, I have never had a definitive diagnosis of RA or any other disorder other than Sjogrens. My labs are always normal. Now that I am 46, without any treatment other than NSAIDS that rip my gut up, I am progressing. I have finger joint flares that swell and hurt for 24-48 hours and resolve spontaneously. I have Prinzmetal’s Angina. Severe fatigue. Depression on/off. Pleurisy. GERD. Dysphagia. Hoarseness. Rash resembling lupus butterfly on/off. Stress increases symptoms exponentially. The rheumatologist I saw ignored all of my subjective findings and said “i don’t have any cardinal symptoms” so come back when I flare. I was so aggravated, I never went back. My hubby and I think I should find a more refined and detail oriented specialist that I don’t “work with” in the community. The docs here frown on “uppity nurse practitioners” who actually do more research than they do :).
Glad I found you here!
Linda
It does sound like it could be RA / RD. Many have the palindromic / passing flares for years (I did too). It could also possibly be lupus or something else.
It would be good to get to a rheum doctor who uses MSUS https://www.rawarrior.com/tag/musculoskeletal-ultrasound-msus/
Also, try to get a doctor to see you when the joints are swollen so she/he can evaluate what she sees.
For now, wouldn’t they treat you based on the Sjogren’s dx? Apparently Sjogren’s can cause joint flares too. The media says it was devastating for Venus Williams.
My first symptom was my feet and my wrist. I had carpal tunnel, tynosynovitis which led to surgeries in both wrists and tenosynovitis and swe lling in my ankles. I also had severe arthritis in my shoulder which led to a rotator cuff repair but not sure if this was the Osteo or RA
Starting in feb 2016 I felt absolutely exhausted for no reason. Also a rash appeared on both of my palms which I still have. Joint pain and jaw pain has been a continual thing since feb. When I wake up, my joints feel very stiff also. I am constantly tired and have headaches sometimes also. I have had every blood test done and all come back within normal range. These symptoms are continuing and I am becoming frustrated not been able to be diagnosed. The doctor scratched his head and said. “This is a mystery” Does anyone know what it might be. Help! Serena
Informative. Best current up to date information on a website that I have seen in my searches. I was dianosed as having Fibromyalgia, very recently, by a specialist. I disagree with her evaluation and tomorrow, I am getting a referral for a second opinion…
As far as I know, my R.A. started in my right eye. I had just come back from Afghanistan with the Army, when I started getting episcleritis in my right eye. It would be treated with steroids and then immediately come back. This happened close to 20X, before I was sent to my Rheumatologist. It was then I was diagnosed with R.A. I believe I may have had joint symptoms long before these attacks, but I’ve had several military-related injuries, so I thought that was to blame. Now my R.A. has attacked my lung with pleurisy and pulmonary nodules, my right thumb, both heels, spine and hip.
I know I am down at the bottom of the list but if there is someone who can help. My doctor has not gotten a positive test back for RA but the xrays show deteriorating bones in my feet and hands she thinks its RA but no test comes back positive. I hurt all the time, my hands and elbows hurt so band I cannot lift a can of soup, my feet are so stiff its hard to walk, and my ankles feel sprained all the time, this horrible ache night and day. Does this sound like RA? Anyone?
Hi,
My first symptoms of RA were in my feet, i had just turned 30, i had 4 small children and we were preparing to move from one side of Oz to the other. Timing was not great, but it never is.
Arthur(as he is known to those around me), has been in residence for some 25 years. In that time i have had 3 surgeries including 2 shoulder replacements and I’m preparing for foot surgery next month.
Despite every drug available to us in Australia, nothing has slowed the spread of this insidious disease, but i live in hope that just around the corner there maybe just the right mix to evict Arthur or at least send him on holidays!!
I haven’t been officially diagnosed with RA but I have to go for a bunch of x rays and more blood work. My hands and feet and my ankles are all swollen. My hands/ fingers are in constant pain. When I sit for a little all my joints get stiff, in the morning I can barely move my hands for the first 3 minutes in the summer and 5 to 10 minutes in the winter. This has been going on for about 9 months. My fingers stay swollen to the point where I can’t wear my rings anymore. I had blood work done and the RA factor came back negative but autoimmune factor came back positive. 1% of the population RA factor doesn’t show in the blood work, the specialist is leaning towards me having it because of the other symptoms going on. Hopefully the X-rays and the rest of the blood work that was ordered will determine what’s going on with my hands and feet.
With me, it started in my knees. The pain got so severe that that no Cortisone injections helped control it anymore, so I had to have total knee replacement in both knees (at age 47). Initially, the orthopedic surgeon thought that I had “only” osteoarthritis. I was not diagnosed with RA until 3 years later – the knees were not feeling any better than before the replacement surgeries, even though “structurally there was nothing wrong with the titanium implants”, only now I had the symptoms everywhere else. Feet, ankles, hips, fingers, wrists, elbows, shoulders, neck – everything was attacked seemingly overnight. My blood work was completely out of whack. Within a few months of the initial RA diagnosis (it took 4 doctors to finally reach the conclusion that I, indeed, was suffering from RA), both my eyes had to be operated on, and the first nodule appeared on my left elbow. I am now on Methotrexate in combination with Humira (after the Enbrel injections didn’t do anything other than producing massive headaches). I am still in a lot of pain, and my hands, feet and knees are always swollen. I am not sure if any of my treatments is really working to my benefit – the Methotrexate has killed my stomach though.
Even though I have PsA rather than RA they very similar beasts. Looking back my first indication was repeated pleurisy in my late teens and early twenties. By the time I was 29 I had awful swelling pain in my ankles and feet. It was many years until my hands were struck as well. Thankfully biologics control it now.
Amen we need more research and competent Drs.
All I can really remember is pain in my knees and feet but just assumed it was because of my job of being on my feet. I wasn’t diagnosed until I woke up one day and could hardly move couldn’t lift my arms higher then my elbow height and walked as if I was 100 yrs old. So my daughter had a drs appt that day and she asked me what is wrong and I told her that I just hurt everywhere so he took my blood and later diagnosed me with my RA.
hands and wrists but possibly my feet and ankles too. First blood test came back negative for RA and GP reckoned could be part of going through the menopause. I was 47 when I noticed stiffness and pain in my fingers and wrists.Another doctor sent me for another blood test for RA which came back positive and I am now coping as best I can using Ibuprofen as an anti inflammatory and pain killer whilst waiting to see the specialist. it has been 10 weeks since my diagnosis and I am so far managing in my job as a dental nurse. I am also Type 1 Diabetic but not related to RA. My grandfather had RA severely in his 30s but didn’t seem too bad as he became older. He suffered painful swollen hands when he had a flare up
I’m trying to remain positive but wish I could see the specialist soon.
My first symptom was my shoulder. I didn’t have full range of motion, and when I tried to use it the extreme pain would stop me.
Hi my first symptom was my right ankle… then my left shoulder then my fingers swelled… later my wrists and knees and ankles. I also had two synovium cysts.. one burst under my left knee. It took about 9 months for diagnosis.
I didn’t know it at the time, but looking back I realized some unusual pains I experienced were just the early beginnings of RA. The very first thing I noticed was when I started a new job that involved looking up for long stretches of time to prune some trees. My neck got so stiff and painful that I would actually support my head with one hand and prune with the other. That would happen for a couple days at a time sporadically, but within months I had unusual fatigue (I would fall asleep as soon as I got home on Friday from work and not get up until well after noon in Saturday). About 9 months later, I started to have problems with my lower back, then my feet and then my fingers, which was when it finally occurred to me to see a doctor because these couldn’t all possibly separate injuries, despite my strenuous job. I had high blood values and, by then, obvious swelling, redness and even some joint deformations, so An RA diagnosis was pretty clear. The whole process took about 2 years.