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
For me the first big sign was that I developed HELLP syndrome when I had my twins. HELLP stands for hemotosis, elevated lipids, low platelets and is a serious complication on top of pre-eclympsia. After I had recovered, I did some research into HELLP. The women who are most likely to get it have underlying autoimmune system diseases, although it is typically lupus. That was the first really big sign.
When my boys were 18/19 months old, all of a sudden I got super sick with RA symptoms. I was so tired I couldn’t get out of bed. I had severe shooting pains that made it hard to do anything. I ran a fever for 4 months straight. At that point I got referred to a rheumatologist. I clearly also had Raynauds. However, all my blood work came back normal. It took until April 2011 for my blood work to test positive for RA. The months leading up to that my hands and feet were swollen all the time and even though I was still testing negative, plaquenil wasn’t working anymore so my rheumatologist put me on methotrexate. Once I finally tested positive my methotrexate dose doubled, it didn’t do anything but make me sick, and within about 6 months I was finally able to get on Embrel and get some relief. Because it took so long for it to show up in my bloodwork, it took until that time to get a definitive diagnosis. Prior to that I was labeled as pan-rheumatoid or poly-arthritis. My rheumatologist doesn’t believe people can have RA if they don’t test positive (I know, long story there but I’m moving in a year and I’m on a biologic so it doesn’t make sense to switch at this point) so for years he tried telling me it was just depression. It wasn’t until I brought in pictures of when my swelling got really bad that he actually believed I had anything beyond depression.
It was 3 months after the birth of my daughter and when I would get up at night to feed heir could barely walk due to the pain in my feet and ankles. Shortly after that I could barely pick her up due to the pain in my shoulders.
My first joint to become ivvolved was my right ankle. I always thought it was from sports injuries in the past. About a year or so before diagnosis my elbows began to hurt. Following surgery for a kidney stone they became very painful sending me to the Dr. MRI showed tendinosis in both elbows. That just got me antiinflammatory meds. I first saw my Rheumy for symptoms of fatigue, achy joints, and dry. yes. I was first diagnosed with sjogrens in January 2009. In November 2010 I experienced my firat BIG flare with both hands and wrists swelling, extreme fatigue and several other joints aching. I was offically diagnosed with RA and started on MTX and Prednisone.
My husband had compression fractures in his spine, some pulmonary inflammation and chronic fatigue – of course no doctor connected any of that to his RA diagnosis. His blatant symptoms came less than a month after CT and MRI scans (I asked if the contrast could have triggered this!)
With no warning signs other than what I’ve mentioned, Tom simply awakened one morning with ALL of his joints inflamed. The swelling and redness was alarming with pain so severe that he could not dress himself, turn in bed without help or pull the blankets. Just awakening one morning with severe pain and inflammation, with total joint involvement seemed sudden, but I think there were earlier signs that this monster was brewing, but no one recognized them as symptoms of RA.
Thank you for commenting Pat. That kind of sudden onset is really a shock isn’t it? I know some others, including men, had it start that way. It’s hard to believe that a person can suddenly not even pull on sheets, but it’s real. It’s good that he had you to stand by him. Sometimes this happens & a person has no help and there is nothing much to “see.” This is why it bothers me to always read that RA can be disabling “eventually” – making the drs expect that it is not sudden like it was for your Tom.
The work we’re doing together as patients will hopefully improve the knowledge of RA so that earlier diagnosis would enable earlier & better treatment.
Hi, I was diagnosed w/RA in early 70’s (preteen). It hit my ankles first. I’d be walking or running and all of a sudden my ankle(s) would give out. Then it hit the balls of my feet. It was at this time doctors were brought in and it took 2 years to diagnose. In the 5 years to come, the shoulders, the knees, the hands, the hips, the elbows, the jaw and the neck. Thanks go to the Lord for Enbrel for my spine is presently spared 🙂
mine started in my feet, although a few years before that i usedto get terrible hip pain now and then, the gp told me i was imagining it! but that stopped a while before my feet started, so i dont know if they’re related, i think so though.
Mine began in my wrists 56 years ago. It was a few years before my feet and neck were involved. Much later before my knees, shoulders, ankles, fingers and toes became involved. Finally my spine, which is the worst problem at this age(80 in Jan. 2013) Surgeries and meds keep me functioning to a degree, and I do have a wonderful life, in spite of the pain and fatigue.
I think I may have commented earlier but I can’t scan all the comments! I wanted to say that for a long time I thought my ra exhibited in my feet first, but that was really just where it showed up on it’s way to kick my butt. Years earlier I had been diagnosed with a “mild” case of lupus – meaning it was just active enough to be a pain, but not land me in the hospital. Anyway, I had several bouts of joint pain that my rheumatologist dismissed. I saw my regular md and it was just “oh. Hmm.” Once I got antibiotics. Woohoo. But the first place I think I had RA inflammation and pain was in my neck. Then it went round and round between my neck, my jaw, and my right shoulder, and right knee. Always on the right side lol. Never bad or frequent enough to diagnose as RA but in retrospect, I think that was the RA trying me out. It took several years for it to “present” more “typically”, and when it did, it was feet first, then shoulders, THEN hands.
My RA started in the right shoulder. I was treated with cortisone shots and PT. When both arms swelled, and my feet could barely be walked on, I went to a sports medicine Dr. He knew immediately I had RA. Blood work supported this. It has been downhill from there.
Hi. Thank you for doing this. Since I was diagnosed 2 years ago, I have been blessed to have great doctors and a minimal amount of medication has been working well.
The very first symptom I had was waking up one day and not being able to close my hand. I could not make a fist. And there was pain. Before I was able to get treatment, I progressed to extreme stiffness in my hands, knees and hips. It was so painful to walk, bend or grab onto anything. I felt like the Tin Man before he got oiled!
I now take 3 methotrexate tabs a week and 2 plaquenils a day and I would consider myself in medical remission — I have no pain and I am functioning normally. And for that I am so grateful!
Mine was feet and hands
RA started for me with rashes and urticaria hives, which I still get daily! Then my wrist and foot, fingers, wrists, knees, other foot!
After being a 5-8 mile a day walker , I woke up one morning with very swollen feet. I brushed it off as a “walking injury”. I could not fit into my shoes and went out and bought some Clark’s flip flops. The disease quickly spread to my knees and then my hands and elbows. I needed help dressing myself and it started taking me about two hours just to get out if bed. Then I had to get ready for work. After about one month of this, I went up my family dr. Dr Kevin Page in Grapevine, TX. He immediately diagnosed me with RA and referred me to my wonderful Rheumatoogist, DR Thomas Geppart. I am still in pain every day, but thanks to an immediate diagnosis, my RA is not as bad as it could have been.
The first thing I felt was fatigue which I thought was post partum depression. Then I started having horrific hand pain and cramps which I thought was from overworking them. For three years the pain and fatigue escalated as I was told by my doctors that I was getting older and still overworking myself. I finally went to the doctor who delivered my child and knew that I had an emergency c-section with no anesthesia or pain medication. When I told my current pain was almost as bad as my unusual delivery, he sent me to a rheumatologist who then took two years to figure out that I have both RA and lupus. If only there was such a thing as early detection……..
My first symptom of RA was the shock of my life. After years of having doctors poke around on my ankle and knee of my left left leg, I finally found an orthopedic surgeon that thought to take an x-ray of my hip. I needed a total hip replacement at age 25. To his credit, he DID test me for RA, but my RA factor was negative. So, it was chalked up to a birth defect.
However, almost five years later, I got in to see an excellent rheumatologist and got my diagnosis after a series of blood work and x-rays. I’ve got damage in my right hip (on the verge of a replacement) both hands, jaws, neck and left elbow. All of the pain in those joints didn’t begin until about 2 years ago – so at least 13 years after my first tinge of pain in my now replaced hip.
I hope this info helps. I also enjoyed reading all the comments 🙂 Stay strong, everyone!
Thanks, Kristina. I do believe it makes a difference to many patients who are searching for answers. And for the doctors who read who may have been taught that it has to begin in the hands.
In September 2011 I was a fit & healthy 46 year old. Came home from work had a shower – noticed slight pink rash on torso & legs. By that afternoon the pain in my elbows wrists knees and feet along with swelling was unbelievable, could hardly move. Forward on 1 week & my GP is testing me for RA. Nothing of note showed up in my bloods, and he managed to get me to a Rheumy in 6 weeks. He put me on sulazapyrin – didn’t work, then plaquenil didn’t work. Tells me I am seronegatve and has added Metho. Helping somewhat. Right elbow still giving me HELL, and my feet the last couple of days have gone out in sympathy 🙁
in July 1995′, soon after my 50th birthday, I was taking a beach walk along Lake Michigan and experienced pain in my feet and knees. I thought, ha ha, after a milestone birthday, the body is starting to get old. Within months of experiencing symmetrical joint pain, I got the RA diagnosis and began the ladder of meds for pain: Tylenol, demerol, prednisone, methotrexate,plaquenil, Celebrex, and eventually Enbrel which gave me some improvement in mobility. My Rheummy believed in early aggressive treatment to prevent joint deformity. By the 3rd year of RA, I took leave from my school job, went to physical therapy for 3 months for joint pain and mobility improvement. My employer recommended disability retirement, which I took. applied for Social Security disability benefits, and was approved on 1st application. In the past 15 years I have been hospitalized for serious cellulitis infections and pain flares. 4 years ago my kidney function dropped to 20 percent. Had to stop Enbrel, methotrexate, plaquenil, and went on cytoxan, and then Immuran chemo drugs for Weggoners kidney disease. Immuran also kept me from RA pain symptoms. in Dec 2011, I got Breast Cancer, so after lumpectomy, made it thru half of the chemo treatments, followed by 24 radiation zaps. RA joint pain is returning, so I Upped Prednisome amount and take Imuran again. At age 67, I choose to not define myself by these illnesses, and appreciate every body part that still works. Life is still ok! : ))) RA Warrior is a Godsend and a gift of information, support and hope. thank you!
I have had foot problems for years. Had two surgeries for hammertoes but doc didn’t tell me it was from arthritis. Hammertoes came back. My rheumatologist told me that I had RA in my feet for years. One morning I had trouble getting out of bed due to painful, stiff knees. Shortly after that I had intense pain in my fingers that lasted all night. That is when I found a rheumatologist. Feet aside, this came on very fast. My poor mother got it when she was 48 and lived wth it until she passed away at the age of 91. I wish I had been more attentive to what she was going through.
I never thought about it until I saw it here somewhere, but mine may have been pleurisy. I didnt even know that is a symptom of RA. I was thinking along the lines of Lupus. Anyway, at about the time my health started a general “free fall”, I had bouts of plurisy for two or three years. My shoulder always hurt and there was a gurgling sound when I took a deep breath. This finally ended up in pneumonia. Although a career athlete, my feet were hurting me all the time, even as a younster. I used to stand on the sideline or practice and look around thinking, Is everyone’s feet hurting as bad as mine. My ankles would swell and bruise very easily. I thought maybe I wasnt tough and it had a lot to do with the way I was brought up on a farm. When I really think about it, my joints have always hurt, and Ive always felt like I was working thropugh some type of anemia. At times I even thought I had diabetes or something worse. When the overall sickness and fever came with the attacks in my early twenties, I started seeing doctors. The first few blood panels showed a high Rheumatoid Factor and then it was a while before it went up again. Of course, I went round and round with doctors for years. Steroid shots, anti inflammatories, steroid packs, bottles of steroids, gout medications(I do have gout, but fully under control now), diets, creams, pain pills, pain shots, pain clinics, doctors and knitwits, chiropractors, Rheumatologists, physical medicine, specialists,psychiatrists, ortho, neurosurgeons(4 operations),and need I say more? I even had a stint where I just went to 24 hour clinics for six months and got pain meds and steroid shots. No one would help me. However, after a long journey, I have found some of the right people, so dont give up hope. One should never expect to ever stop planning against RA either. For the rest of someone’s life. Give up means go down fast for most of us.
Feet/Toes then Fingers/Hands…thought that was bad, HA! wish it had stayed there!!
My first symptoms were in my spine and my knees. I was in a K Mart, in the book section at the back of the store, and suddenly I could not walk. It took me an hour using the shopping cart to get to the front of the store and out to my car. I was diagnosed with a herniated disc, congenital hip defect affecting my knees, and being overweight. It took a year to be diagnosed with RA, and by that time, I was asking doctors if I could had RA… they said NO. including a “great” rheumatologist at Hershey Med.
Looking back, I had allergy tests in my late teens, and was told I was allergic to “something inside of myself”. I believe now that was the start of my RA, not diagnosed until I was 45 years old.
Amazing story, Elizabeth.
My first symptom was numbing in my fingers tips, Sept 1997…. 14.5 years before I was actually diagnosed, though I went straight to my family doctor at the time.
The numbing occurrences increased, then in 2003 (9 years before diagnosis) the early morning finger joint & hand swelling began. By 2005, early morning feet & toe joint swelling began (still 7 years before diagnosis). By mid-2006 extreme mid-day fatigue set in. Achiness in the muscles are started to become more bother some. It wasn’t until 2011, 9 months after the birth of my 5th baby, that I realized I needed to get to the bottom of this, for I could no longer blame stress, as the issues that had been stressing me for so long were no longer relevant.
I started researching joint inflammation and many different types of arthritis. Prior to going back to my family doctor, I was quite sure of my symptoms and what I had. Blood work and xrays were then ordered and an appointment with the Rheumatologist made. At the first appointment with the Rheumatologist my diagnosis was confirmed…. in Jan 2012
I forgot to add…. that I do remember, as a child in the late 1970s, getting random sharp pains in my leg and arm muscles. But it never seemed to point to anything particular being wrong. I never mentioned it at home as I didn’t think there was anything they could have done. I also had a history of weak ankles and wrists.
Now when I get random sharp pains in a particular muscle, I know it’s the RA… but we are a long way from the late 70s.
I was diagnosed very quickly because my hands were the first to be affected. I had strep throat and 5 days later I could hardly use my hands and quickly my feet gave me issues. I of course thought my pain was associated with the antibiotics I was on so I put off going to the doc till I realized even after finishing my antibiotics I still was having major issues. My GP diagnosed it right away and referred me to a rhummy. I often wonder if the strep triggered the RA.
My first sign of RAD was episcleritis. I had this on and off for years before I was diagnosed with RAD after amy first major flare which started in my wrists, moved to knees and then into my shoulders. That first flare was acute and very debilitating. I got to a rheumy quite quickly and tested very high on the anti ccp test. I did not experience anything with my hands until my second year.
A small bump on my upper chest that was very tender to the touch. I went to my doctor and she had no idea what was going on. She said if it’s not gone in a couple of weeks, come back. So I went back a month later and saw a different doctor. She was the one that said I should see a Rheumatologist. That was 10 years ago…and the rest is history. The pain is in so many places but, the feet and ankles are the worst. I have ALOT of difficulty walking. Forget about shoes. Still haven’t found a pair that’s acceptable. Any suggestions?
Debbie there is a shoes post with lots of suggestions from patients – we’re all different but maybe that will help. I say the perfect shoe for my feet is the one that does not touch it. https://www.rawarrior.com/whats-your-advice-for-shoes-for-rheumatoid-arthritis-feet/
My first symptomps were in my fingers…pain,swelling, tenderness, and stiffness. When I would wake up in the morning I could not close my hands to form a fist for at least an hour. Then the morning stiffness started. I could not believe the incredible difficulty I had getting out of bed and making it to the bathroom before I had an accident. The morning I woke up and had so much pain and stiffness in my feet is when I finally admitted something was wrong and made the appointment with my Rheumatologist. You don’t know what pain, ache, or problem will come with each new day. I hate this disease and what it does to me and others.
Georgianne, I have rarely heard someone describe what you have – an actual textbook description of how RA is supposed to be with the “morning stiffness” etc. Thank you very much for sharing because we would really want to have all kinds of experiences reflected here!
My disease started with overall fatigue, debilitating fatigue. Doctor’s believed that I was depressed but ran lots of blood work. Second symptom was lack of white blood cells, I was sent to a cancer doctor who ran blood work again and asked lots of questions. Have you been really sick lately? Uh no, haven’t been sick with anything in years just tired and hurt everywhere. Sent to see Rheumy who wasn’t that great and he said I had Sjogren’s syndrome which explained dry eyes and mouth but did not explain pain, swelling and over all fatigue. Three years later after a move from one state to another and a new doctor she announced after looking through all my paper work that I have had RA all along. I was finally able to to receive the medications I needed to alleviate my pain.
I’m so glad you found a rheum dr who could diagnose you – I’m sorry it took so long – I guess it was good that you moved.
My first sign of RA was in my jaw. I could not open my mouth wide enough to eat a normal bite of food. Anything that required my incisors to work, like taking a bite from a sandwich, or eating corn on the cob was excruciatingly painful. I had to hold my hand on my mandibular joint and press in because it felt the joint would pop out.
People, my dentist, my doctor all said that I was grinding my teeth. I have never ground my teeth, but went through a series of mouth guards. They disturbed my sleep, making me grouchier, but didn’t help.
I began researching Lyme Disease because I heard that Lyme Disease could cause jaw pain. I went to my doctor and demanded a Lyme Disease blood screening. He ordered a full blood test, and it came back with elevated rheumatoid factor and referred me to a rheumatologist. She ordered an Anti-CCP antibody test and my blood count for that was over 250, and anything above 50 was considered positive for RA. Enbrel now for 3 years and it works mostly.
My RA symptoms began in my hands. I went to bed one night and I was fine. I woke up in the morning and my fingers were all warm and swollen. It just got worse from there. I was first told that I had Lupus. Then finally I was told it was RA.
It’s hard to say where it started. My right ankle, which is acting up and sore/swollen at this moment is bragging to me she was “My First”. Oh great – now my shoulders, wrists and toes are arguing they were the ones that started the warning signs. And as I type this, both my middle fingers are snickering at me – because they are stiff and swollen and I haven’t been able to straighten them out in years.
My RA onset… I’m really not sure to be honest. My doctors would say it was about a year ago give or take. I am more inclined to say it was 7 years ago. The reason for this is that when I when I pregnant with my son my back started hurting really badly. My doctor’s guess I had a herniated disk at L5-S1 and sent me to physical therapy. As I was pregnant, they couldn’t do an MRI or x-rays to confirm this diagnosis. I clearly remember at physical therapy the therapist being confused by how one day my right leg would hurt and the next it was my left ( a symptom of RA, I know now). He attributed it to the shifting of my baby. After giving birth, I finally had an MRI which confirmed a herniated disk and there began my journey of cortisone shots, radial frequency neurotomy, facet blocks, and PT. At times I functioned relatively well at others not so great.
In 2008/9 my neck began hurting and my hands and arms became incredibly painful. I remember driving and thinking of my arm as dead because I couldn’t hold onto the steering wheel because it was just that painful. I could forget about adjusting my a/c or radio while driving at that time (here again both arms were having pain). Another MRI confirmed a herniated disk at C5/6. The doctor recommended surgery when all other treatments didn’t work. So I had a diskectomy with fusion. I still had moderate pain in neck afterwards, but it seemed to improve.
In early 2011, my neck and lower back were hurting terribly. My surgeon had me do a CT myelogram which revealed a failed fusion at one level and a new disk herniated. So, in June 2011, I had another surgery on my neck.
In 2011, my lower back which had never been completely well during all this REALLY began to hurt. Went again for more PT, cortisone, etc. The doctor finally recommended surgery. In Dec 2011, as I was preparing to have surgery (literally 4 days before) my surgeon called me at home to tell me he was quitting and recommended I see another surgeon in his office. This surgeon refused to do surgery because he was afraid he would do more damage than good. In the midst of this my hands and neck began hurting really badly. I couldn’t get ice cubes from a tray due to the pain. So, once again, CT, MRI, and EMG. There was no apparent reason for my new pain. The surgeon recommend I see a rheumatologist. I forgot to mention, at this point, I had been diagnosed with degenerative disk disease.
So, here we are at March 2012, I saw a rheumatologist who confirmed a diagnosis of RA. According to him my degenerative disk disease is a wholly separate issue. The thing is, that since beginning Methotrexate and predisone many of the symptoms in my neck and back have disappeared. The only other symptom I had noticed prior to this diagnosis was I would wake up occasionally with stiffness in my knees, but because of all of my back problems I attributed it to my being a hypochondriac and ignored it. I have experienced fatigue for years, but I have spent so much time in pain that I attributed the fatigue to pain. My rheumatologist swears that from my x-rays he can tell that I have only had RA for about 6 months to a year. I don’t see how this explains why my back pain has been greatly alleviated with Methotrexate. I would consider Predisone as the culprit for relieving pain except that I have tried it several times over the years as well the cortisone injections. I leave the judging up to you whether or not my degenerative disk disease is separate from RA……
My hands were not at the top of my list of first symptoms. Hindsight being what it is, I was having mystery fevers at night and figured I would most likely wake up with a sore throat or some cold. But the next day,nothing. That happened a couple of times. Then the pain in my shoulders and fatigue like I had never experienced in my life. So bad I couldn’t make it from one room to the next without having to lie down. Then the morning stiffness and then all the time stiffness. At the end of my shift at work I would sit down and do my charting for my patients. When I got up from the chair, I couldn’t straighten up and walking, well trying to walk was embarassing and painful. Then my hips started hurting till I cried. Elbows and hands and wrists were next. Now it’s my feet. I don’t have the pain in my toe joints like others. I feel like I’m walking on rocks. I’ve heard it explained here before about trying to get to the bathroom in the morning before having and accident. I’m in the same boat. Sometimnes it takes 2-3 attempts to stand up out of bed in the morning. And then tryng to walk on my rock feet while holding on to tables and walls to get to the bathroom. Getting the drawers down in time because of all the pain in my arms and hands is another obstical. Much like MS, it seems everyones RA experience is different. And everyday can be different as well.
My first attack was in my foot. The joint in my big toe suddenly became severely inflamed. With a couple of days it started in the other foot.
I first presented with sudden significant swelling, stiffness and pain in both knees. I thought I had done something to my knees because I had been doing a lot of gardening. I went to see a rheumatologist because my mom had a history of osteoarthritis and I did not know there were different types of arthritis. That was about 5 or 6 years now and of course, now I understand the difference between osteoarthritis and rheumatoid arthritis! And my RA has presented throughout my joints: knees, feet, ankles, hips, hands, elbows….
I’m so thankfull that I’ve found your website Kelly. It’s inspired me to attempt to start a support group for people with RA in my area as there are none. I’ve been in touch with Arthritis Introspective and hopefully if I can get up the nerve to start a group, I can get some training from them on how to do it. I believe now that it’s going to be more than beneficial to speak with other people who know what each other is living with and struggling with on a day to day basis. SO Thank you Kelly for the inspiration that you are!
I first experienced problems with my feet 15 years before I was correctly diagnosed. The first symptoms were in my toes that were swollen and very painful and I developed claw toes and bunions. I was only able to walk with custom orthotics and expensive shoes.I lost a considerable amount of bone in my feet due to erosions. Still no correct diagnosis. Next I had bone erosions show up in my shoulders. I was told it was “just bursitis”. Then “torn rotator cuffs”. Still no correct diagnosis. Finally, 15 years later I got slight swelling in my hands. This was just a year ago. Finally I was diagnosed with RA. It took fifteen years during which time I could have been treated correctly. I can hardly walk now. Additionally my mother had suffered from debilitating RA. No one paid attention to my symptoms despite the family history because it wasn’t in my hands…
Thanks, Kelly, for taking the time to reply! I was just officially diagnosed and began treatments in March. The work you do is not just helpful, but downright inspiring. This site has been a life-saver when I have questions or feel down.
I also just wanted to quickly add that for someone who has RA that started out like mine – if you don’t feel right do not believe it’s all in your head. Don’t let someone tell you it’s just osteoarthritis or lack of sleep. Do not give up. Go to as many doctors as it takes until you get the correct diagnosis. I learned the hard way that time and RA combined do not treat your body kindly.
amen to what she said! There is no easy clear cut test for RA diagnosis or disease activity yet, so we really are dependent on getting to that good dr who will listen & look carefully. Don’t give up until he/she is found.
It took many years to diagnose me. Thought it was Lupus for a long time. Looking back my first issue was the most intense shoulder pain I have ever had…couldn’t raise my arm at all. They gave me a steriod shot and diagnosed me with acute bursitis. After a few years of feeling like I had the flu all the time with achy joints, running low grade fevers and generally not feeling well, they tested me for RA and it was positive. Now, I am having issues with my hips, feet and back. My hands never really hurt but swell all the time. There is no rhyme or reason to this disease. One minute I am ok and 15 minutes later I begin having a pain somewhere in my body. I also don’t have pain in both sides of my body all the time.
I was diagnosed after spending several months with my hands waking me up every night because they hurt so much. One night I decided to look up “pain in both hands” and discovered RA. I saw my doctor about it and she was not convinced, pointed out that I was in my 40s and that’s when osteoarthritis will start kicking in. But to humor me she did a blood test, and my rheumatoid factor was off the chart. So she approved sending me to a rheumatologist, who confirmed I had RA.
In February 2012, my left ankle and foot started swelling and hurting. Long story short, it got diagnosed as “tibialis tendinitis”. While I was at home dealing with that, I went to the doctor about my right middle finger. Doctor referred me to a rheumatologist. Diagnosed with psoriatic arthritis in June 2012. Now looking back, I can see where it started in my ankle.
God bless you for creating this wonderful website. If not for you, I would still be thinking I was losing my mind – that I was the only one going through this misery. All of the posts I’ve had a chance to read are heart-wrenching. No one should have to hurt like we do. God bless all of you and comfort you. Prayers for a cure or better treatment soon.
My first symptom was in my right knee. I thought my knee was swollen from a fall skiing or too much running. Over the course of about 7 months the pain had spread to my other knee, feet, wrists, elbows, hips…just about everywhere. My doctor tested me for RA and it came back very positive.
Mine was very typical. My pinky finger hurt one day. By the end of the week, all my fingers felt tight and strange. Very tight in the morning, and comfortable by 10am. One google search and I knew what it was. My primary care listened to me and confirmed the dx the next month with labs. I was lucky.
I do not know where it started, as I woke up one day and several things hurt, at once. Like most people I thought it was just that I had slept wrong…2 years later, I’m still sleeping wrong. For the first year it seemed to travel around a lot, hopping from joint to joint on almost a three hour basis. Could almost set my clock on it.
Now, it is my ribs, my left shoulder, and my knees that feel it the most. My hands show it the most (swelling) and I am cautious of them, but the pain is not greatest there.
My worse symptom has been the flu feeling and fatigue that hangs out with me. That’s another bandwagon I wish someone would start.
Hugs,
Jennifer
Mine was a horrible chronic pain with stiffness throughout my body but my shoulders and all the way down to the hands was the biggest issue … constant chronic pain and it took them a year and a half of my crying every day from the pain and not being able to function before they diagnosed it … they originally thought it was fibro … I knew it wasnt … so awful
Thinking back, I think my first symptom was a lingering low-grade fever. I had never had this issue before. I ran a 99.5-99.9 temp for about three months; I just figured my internal thermostat had re-set. Then, I started having stiffness and pain in my right index finger, added in the left index, the right middle, left middle, and so on and so forth…
Ankle pain and damage and back pain (not lowback, not cervical spine, right in the middle). Thought I just had “weak ankles,” then “growing pains” as all the other symptoms hit almost all the rest of my joins (AVOIDING my hands/wrists/elbows) but was dx’d with RA when I went to the doc about my back. “Luckily,” I was sero-positive.
Couple other things, though:
-Didn’t hit hands/wrists/elbows until I was 46 (was first dx’d at 24, went thru an 8 yr remission from 38-46).
-Current rheumy judged whether or not I had RA by the swelling in my knuckles, and the fact that pred worked, and now mtx is working. But still didn’t really believe until he saw visible swelling in my knuckles. Not interested in knees or back or…anything else.
-MD told me about plantar fasciitis, which I think most of us have. I think it’s one of our special little lagniappe that comes with RA. I’ve treated my feet for that, and it’s done a lot for me, and for several others I know.
-Mine actually did start in my feet, too, but I just thought it was bad shoes, so I went barefoot most of the time, which eventually pretty well destroyed my feet. I’d forgotten about that, because, until recently, I didn’t really think my feet was the RA, thought it was just me being rough on my feet, and I really was. But current rheumy does not believe my feet are “rheumatoid.”
One more thing, I promise lol! No morning stiffness until I was in my 30s. Still not really bad until this bout of it (age 46). Chronic fatigue started when I was in college, but had had it off and on before that, which was possibly depression-based (not RA related), but it didn’t really kill me until this time. I do have a sleep disorder that makes mornings feel like chronic fatigue, but I believe that’s also probably not RA related (but who knows? it’s called delayed sleep disorder syndrome if anyone else wants to look it up and see if it fits).
My RA began 19 years ago in my right wrist. I would awaken with it just throbbing and I didn’t know what I’d done to cause it. Actually, I’d done nothing. It lasted for a very long time. Doctors said it was carpal tunnel and gave me a brace (worst thing ever for RA.) But I was never sent to a rheumatologist and diagnosed for about a year.
My first symptom was 5-6 years ago (when I was 24 or 25) in my feet. I thought my pain was due to wearing heels and blamed myself for damaging my feet. I even would scold young women to not wear heels because they would regret it. I thought for years that I was exaggerating my pain. The last few years I have felt easily exhausted- coming home from work and crashing on the couch. My job was very demanding and emotionally wearing so it somewhat made sense. This last year I started having severe neck pain and I was told it was a muscle spasm. Finally, RA obviously presented itself in my thumbs. Before any blood work my GP diagnosed me with RA and referred me to a specialist. Since, I’ve had severe joint pain all over my body- hips, knees, elbows, shoulders. I’m on month two of methotrexate and was just upped to 15mg and am still feeling pretty bad (some days significantly worse than others). I will not give up hope though!
In my case the RA also struck my feet before my hands. Everything started in the toes of the right foot. I had pain and swelling. Eventually my toes got deformed. Then the RA attacked the ankles, knees, hips and lower back. Only then is when I was diagnosed with RA. I was 25 years old.
My first symptom was increased Shortness of breath & pain upon inspiration. I had a pleural effusion.Was given a definative dx of RA after pleural fluids were analyzed. RA continues to mostly affect my lungs, now affecting my kidneys. Do suffer with increased stiffness & pain, but no deformities. Been dx’d 20 yrs. Currently suffer from chronic Rheumatoid lung. About a year ago I woke with flu like symptoms, increased fever & very, very short of breath. Had these symptoms for 7 days, felt good for one day, then BAM! came back with a vengence. Due to not having insurance, I was treating myself at home. By the time I did decide to go to “Charity” hosp, my o2 sat was 82%. This is where my blessing came. The Dr assigned to my care was a pulmonologist in his native country, but was unable to practice that field of medicine here. He dx’d me with BOOP & immediately started me on high daily doses of Prednisone (the DEVIL) & Zithromax every other day. First visit to new Rheumatologist & he ordered xrays of my hands! He later apologized & admitted I took him back a notch or two because upon sight I do not have TYPICAL Ra. He saw me while I was being hospitalized, before labs started coming back. I’ve been off Prednisone & Zithromax almost 6 months now. Still battling which round of tx to go with now d/t kidney’s now involved.