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
Well, I can’t rememeber my very first area to be effected because I’ve never known a time I didn’t have tightness and swelling in one area of my body or another at some point. I was diagnosed a year ago at the age of 33. I went to my regular doctor and said Doc enough is enough what’s making me hurt and feel like I’m walking on basketballs and not be able to interlock my fingers. He did all kinds of tests on me and my sed rate was off the charts, my r-factor was elevated, while other tests were coming back negative. So at the time of diagnosis my feet and hands were where it all started. I’d been having trouble with my heart, and with plurisy(sp), and aches and pains for quite a while before diagnosis. With my diagnosis I actually felt relief because now I had a name for what was happening to me.
After diagnosis, I ran into an old grade school teacher of mine who when she heard I had RA her comment was “I bet you had that when you were a kid” and then she went on to explain that she remembers me always hurting or feeling achey when I was a little girl. So chances are I have had RA for years and never knew it.
thanks for adding your story, Melissa. I think because there is so little awareness of RA, that’s entirely possible. It’s amazing your teacher remembered that.
I was only 2 when I had my first symptom of RA so I can’t be sure. However, my mother told me that I told her, that my bones hurt. When she asked which ones, I said they all hurt.
Hi my RA started in my feet first & spread to my fingers in one week and then knees,and from then on it was a battle to find something to help me,to this day 38 years later still no answer, or meds that have stopped the progression..pred is all itake 10mg & i hate taking it but its what keeps me walking around
My husband and I went to Disney World in May 2010 for our 30th wedding anniversary. I was miserable with the heat and humidity – we’re from Utah in the mountains. My ankles were swelling and one morning I woke up and the toes on my right foot had moved 45 degrees to the right. The left foot hasn’t caught up yet but it’s working on it. Some days it feels like I’m walking on rocks. I was diagnosed with hypothyroid disease in June 2010, RA in November 2010 and pulmonary fibrosis in March 2011 brought on by the RA. Such a great year for my family…
Sharon, I think you are one of the few who have a connection to lung disease/ pulmonary fibrosis, as I do. But I dont have the arthritis/joint pain etc, except about 10 yrs ago when they tried to wean me off methotrexate. Thats when they linked my sarcoidosis to RH. Then a year ago, I was always out of breath again and exhausted, and they took me off the meth and put me back on prednisone and imuran. That works for me, but nothing is great. My sarcoid is presently inactive, but I now am diagnosed with interstitial lung disease, and pulmonary fibrosis. I keep track of the posts on this site always looking for mention of lung trouble connections, looking for any information anyone has about this particular variation. If you have any information about this aspect, I’d love an email or a link. In the meanwhile, I hope you manage all right. You’ve got an awful lot on your plate! Good luck!
To Jenny O’Grady
I was in the hospital in March for 11 days while they tried to find out what was wrong with me. I had been working full time at a job I had had for 16 years. The first week in March I was having trouble breathing but still went to work. On March 6, my husband took me to the emergency room and I was told I had two different strains of pneumonia and was admitted. Then I was told I had interstitial lung disease due to the methotrexate and was sent to a university hospital for tests. After I was released, I made an appointment with a pulmonologist and he told me I had pulmonary fibrosis caused by the RA not the methotrexate. Right now I only take Prednisone for the lungs. I know I need to be on RA meds but I’m afraid to take the Enbrel that they want me to take because I already have lung problems and thats one of the side effects. I had to quit work and am on oxygen 24/7.
Sharon and Jenny, please visit the following website which is support for people with interstitial lung disease of all kinds, including drug and autoimmune related among other types of pulmonary fibrosis:
http://www.huff-n-puff.net/newforum/index.php
My initial symtoms were in my feet. They wer so painful that I would nearly cry every morning to set them on the floor when getting out of bed. The next symptom was severe shoulder “tendonitis” and then finally finger pain and stiffness.
My Mom first started taking me to the doc (at 4) because I said my feet hurt all the time. Started me off with special shoes made just for me that hurt like the dickens. Then I strted talking about my hands hurting and they were pretty swollen (now most of my fingers don’t straighten). This was 31 years ago, obviously, treatments are ALOT different now…
How ya doing now Diana? 🙂 I hope better even with the deformity/limitations.
Goin throgh a rough patch right now. about ready to have an arthoscopic synovectomy and possible a meniscus repair and removal o bakers cyst on sept 9th and hopesully my right knee will be better. also have fibromyalgia, so we’re trying to wokr on a good treatment. But it will work out:) Thanks so much for asking:)
Wishing you the best on both fronts! Let us know how it goes. I will have to explore your blog!
I have not been diagnosed with RA yet, but my doctor has referred me to a specialist. I started noticing the pain in my hands first a few years ago, mostly when I was gripping something or if I would try to crack my knuckles (what a way to break a bad habit). But now I think back to times even longer ago when I thought I felt like I had sprained my ankle, but I hadn’t actually done anything that would have caused a sprain. When the ankle pain didn’t really go away and my knees started hurting (especially on stairs), I just figured that my joints were strained by my excess weight. Now that my fingers and wrists ache pretty much all the time, along with my ankles and knees, I finally mentioned it at a check-up. Then there’s the fact that my mom has RA and at least one cousin has RA (I’ve also got close family with Lupus and other auto-immune diseases)… so, I won’t be surprised if that’s the diagnosis I get. I’ve really appreciated the information I’ve found on this website–it’s the first site I’ve been able to look through that hasn’t left me completely dreading that appointment with the rheumatologist. Just curious–is there anything here on the site (I may just need to keep digging to find it) that would address things I should ask on my first visit to the rheumatologist?
My first symptom was my left knee. Swelling,stiffness,feeling like it was going to give out on me,a lot of heat/redness and pain. It then moved to my ankle and up to my hips. My hands were the last to be affected.
Hands last is not unheard is it? In the beginning I kept hoping it would never really get there so I would still be able to knit, etc.
Just found your blog. Today my dr diagnosed me with a form of arthritis not rheumatoid but in the same family.Not sure what that means. I am going to call him tomorrow and ask him to spell the name for me. Anyway, he put me on the methotrexate and prednisone. My whole body hurts and I have been very depressed for the past few months. One dr put me on tramadol but that has me sleeping through life. My first pains were in my feet. I have fibromyalgia and osteoarthritis so I attributed the hand pain to the fibro. But for the past few years my feet were swollen right below my toes and, like you said, it felt like I was walking on rocks. Ankle pain started a year ago and in Feb couldn’t take it anymore. Now, 6 mos, 3 drs, 4 tests and hundreds of dollars later, this cousin to rheumatoid is my diagnosis. I will be following your blog as I am scared….of pain, of drugs…of everything. I need to be educated about these drugs and my disease. Thank you for this blog.
I think you are on the right track – becoming educated is a good way to fight the fear.
Did you call your dr to ask how to spell your diagnosis? Sometimes it is mixed connective tissue disease or undifferentiated inflammatory arthritis – I think many times, they end up eventually with a more specific diagnosis. But there are also a few rarer names for diagnoses that are similar to RA. It seems like they are still learning about how to distinguish & identify & diagnose different ones since people have their diagnosis changed sometimes. And some go years before having any diagnosis.
Whatever they say you have, I hope your treatment makes you feel better! It is awful to hurt in so many places and there is only one thing that is more important than getting treated: to get the information and support to help you manage. I hope we can help some.
I thought I was having a heart attack, my chest hurt, my shoulder, my hands, went to the hospital and they did a lot of tests, even admitted me. After 2 days the doctor says you have rheumatoid arthritis and the lining of your heart was inflamed and my blood came back positive for RA. That was my first symptoms, then I went home and proceeded to feel like a large bus hit me.
Wow Anne, what a way to get diagnosed! #rasucks ! 🙂 Some days it’s like being hit by a bus or Mac truck, other days it’s like someone beat you up as Venus Williams said of her Sjogren’s diagnosis. I’ve felt both ways, but funny, they are different and distinct from each other. As are the days where you want someone to cut off some part of your body to get rid of that particular pain!
I’ve seen heart, lung, eye, tendon, spine… all as 1st symptom leading to dx. This thread is amazing for research.
I am being tossed aound as atypical “trying to manifest RA” not really having it. been on steroids for 7 yrs and plaquenil also …ordered to wean off prednisone now b/c tests are sero neg. my symptoms also began in feet with minor symptoms in hands. for 7 yrs I have reduced quality of life with gelling and pain in shoulders, neck, back, knees and feet…also had bilateral feet surgeries and mishapen toes remain. the chronic fatigue is a daily problem with a loss of function. I have advancing vitiligo and FM with OA ..no real answers.. once I was diagnosed with PMR also an auto immune disease.. bowel inflammations at intervals.
just cannot get a dx at the medical college at which I am covered by insurance..now am on vicodin….
Ok… “ordered to wean off prednisone now b/c tests are sero neg.” ?? What?
A substantial percentage of RA patients have negative blood tests throughout their disease course, showing that it’s not the patients that are wrong – it’s the tests that are inadequate. Either way, that’s not how RA is dx. Tests are only a part. So that does not make sense… You can see lots of posts about Tests if you use the Tags List and click on RA Tests.
It brings up some questions – was the prednisone helping? I assume if you took it 7 yrs… Have you just changed drs? maybe another opinion would be different? Good luck.
Mine started wth feet, toe joints and then heels, then crept up my legs as an awful ache, took more than 2 years to diagnose as I was told I may have injured my feet, or I was hyper flexible and needed to stretch more and maybe I was depressed and that was causing pain. Argh
It’s so interesting to hear about everyone’s first experiences. They are all so different (surprisingly so for me). Thanks everyone for sharing!!
I was training for my first half marathon last fall and started having pain in the bottom of my left foot. I thought I had been training too hard and possibly had stress fractures. X-rays came back fine, but within a couple of weeks my orthopedist diagnosed me with tendinitis in my left shoulder. Again I thought it might be due to the training, but when it moved to my right shoulder and left wrist, I knew something was seriously wrong. Initial blood tests were completely perfect, but was referred to a rheumy anyway. Thank goodness because my very next blood work came back indicating I had RA. I was immediately started on mtx and prednisone. I had to go off the mtx because it made me feel like I was poisoning myself. I had infected hangnails on 3 fingers, 4 mouthsores (I never got cold sores before) and I felt very sick/dizzy/vision problems. It improved once I stopped the mtx, and now I’m on my 3rd dose of leflunomide. I’m not feeling very well today, but hoping for the best.
I hope the meds help you, Robin! Sounds like you got a pretty quick diagnosis which is a good sign.
I guess mine was ‘typical’. I’d never heard that it commonly starts in the hands/wrists. When my son was about 7 weeks old, one night I was on the computer and out of nowhere my wrists felt as if someone were hammering a nail into the wrist bone. It was excruiating pain. The next morning I looked at my wrists and couldnt believe how much the wrist bone had swelled overnight. It was at least 20 times its original size. From there, my elbows, shoulders, knees, and ankles followed.
Many websites do say it begins in the hands and many others indicate that it’s actually limited to the hands. Hearing from so many patients though, I do not believe that is correct. What I believe is correct is that it does eventually get to the hands in every one of us.
Your description of the pain does sound typical – swelling seems to be optional. Thanks for your contribution. This page is very helpful to people who are looking for answers.
My RA started in my feet. I had feet pain and swelling which started about 4 years ago in my mid 30s. I was also fatigue, but the doctor couldnt find anything wrong. So I went about my business accepting that I could not jog, take long walks, not wear heels etc. I would be awake at night as my feet were throbbing and hurting and nothing helped. I went to a foot specialist to see if they had an idea – but no luck.
Then last year in February I was in a serious accident. I was hit by a train believe it or not. I was lucky as I escaped without major injuries – but I got very bruised as you can imagine. Some joints were swollen and severely hurting – but xrays confirmed they werent broken. Of course I thought it was because of the accident, and so did the physicians.
Eventually I more or less recovered from the accident, but the swelling and pain in my joints didnt go away. My feet was as bad as always, but after some months approaching June I couldnt bend my fingers easily and my neck,hips, wrists, ankles, knees were hurting. I started to walk hunched and crooked. Didnt realize it , but others told me afterwards. Severe fatigue hit and I started walking around in a fog. I had to pry my fingers down to make a fist, and to dress myself was a mission. Or even turning the key to the door. Thats when I thought it was time to go to the doctor again. Now a different one since I had moved countries since the last time. She took a blood test, and I tested positive for RA. I was able to get to a specialist within one week, and was immediately on treatment which helped loads. But I am still struggling to find the right treatment; Im on methotrexate, steroids and plaqueinile, but I am still fatigue and aching. Its been approx 9 months since my diagnose. I am reluctant to go on any of the shots due to the side effects, but am now starting to think that I need to. Its getting worse.
RA started in my feet. I complained to docs about having trouble walking as I was used to being able to walk everywhere. I began to buy shoes very judiciously or else I couldn’t keep my feet in them. I then started carefully planning times when I had to walk or stand as much as I could. I complained to the doc again. I was pretty sure I had Morton’s neuroma and maybe I do but, I also have RA and terrible foot pain.This went on for a couple of years before I was tested for RA and by then I had pain in my hips, knees, and hands. I have dislocated a joint in my spine and broken and ankle when I was literally just walking. I did not fall or anything…the doc said the ligaments in my ankle all just gave out and ripped which broke the bone.
I finally insisted I be tested further again and this time they tested for RA…the test was positive. Having an answer as to why I am so exhausted and hurt so much is good but, it won’t get the rooms painted in this house or help me clean up. My life has seemed to just fall apart and I can’t stay on top of things anymore. It’s also meant turning down friends at times and they don’t understand why I can’t make our annual trip together…flying makes the swelling a lot worse and my ankle still isn’t healed properly.
I am having a lot of trouble navigating the stairs in our house a lot of the time. When I realized this we started to reno to move…that was before I knew I had RA…we’re not finished because I can’t help hardly at all. RA has progressed very fast with me. The sooner I get away from the stair climbing the better. I REALLY miss being able to go for my long, long walks…it’s just too painful to be worth it these days. Really discouraging.
It’s a shame more doctors don’t know that RA often starts in the feet – as least as often as the hands apparently.
From another person whose old life is pretty fallen apart now, I know you’ll find a way through somehow. I hope it gets better soon, Diane. I know it does for many people – either because RA is fickle or because you find the right treatment for it. You’re obviously pretty tough and find a way to keep doing as much as possible.
Kelly, thank you. Even at my diagnosis the doc looked carefully at my HANDS over and over saying “You’re hands look fine” she then sent me for an x ray of my hands. *sigh* I’m still on a wait list for a rheumy doc. I’ve turned into the queen of the bed lately. This blog is so helpful!! Who knew the reason I had to seek out a memory foam mattress topper was RA!! I did this over a year ago not being able to sleep comfortably due to pain and tossing all night. Who knew the soft clothing thing with me was also related and the soft shoes, the lack of ability to keep anything but foam bottom flip flops on for any length of time. I took a membership for an indoor heated pool with sauna today…I asked if it was a “heated pool”
Why yes, they said it’s 84 degrees…hahaha! I’ll give it a go but closer to 90 is way more comfy for me these days. I have learned so much here Kelly and don’t feel like I”m imagining all the ways this has been affecting my life so much anymore. I have no idea why docs never mentioned RA after so many visits for foot pain or why after RA diagnosis I wasn’t given ANY info about softer mattress, shoes, ways to cope..this impacts everything in your life.
Thanks to the advice here I am going to start asking for copies of my records beginning right now. This site is a god send!
glad u found us! Your posts will help others too, trust me. God is good like that.
What you are saying reminds me of a video I’m working on and a post I’m writing today – so when you see them, you’ll know what I mean. 🙂 No, you aren’t imagining it. We make so many adustments to manage the RA that we eventually hardly notice what would really disturb someone w/out RA.
I have had sore feet for about a year and a half, my doc thought it was plantar fascitis and I got insoles, which helped a bit. My great toes were often so painful I couldn’t walk on them,then my knuckles swelled in my hands and I had to take my rings off, I have a new wedding ring 2 sizes bigger than the first! Opening stiff door handles was painful so I took to opening it with both hands and unscrewing jars etc was painful to the little joints of my fingers also my wrists were sore on occasion, then my ankles started getting painful and getting up on a morning was horrendous, I had to go on my heels first and slowly onto my feet. The gp ordered 2 rheumatoid factor blood tests over a period of a few months, both positive and I was reffered to a rheumatologist who ordered ultra sound which showed effusions in all my little joints. last Thursday night was the worst ever and I went to see the rheumatology girls at the hospital where I work to see if they had any suggestions that would help as my next appointment isn’t until the end of October, they were brilliant, they had the doctor look at my results and he prescribed a depomedrone injection which over the past 2 days has worked wonders, still sore but 100% better than it was. I am to start on either methotrexate or sulfasalazine next week, they say methotrexate may be the better one for me. I am very relieved to have a diagnosis but very scared at the same time. I’m glad to have found this page
Thanks for the good descriptions Carol. We’re glad you found us too. Good luck with your new meds. There is a lot of methotrexate info if you click on the menu where it says RA and Methotrexate.
Can I ask is fatigue a general symptom as well? I get so tired and exhausted sometimes and not always when I have been busy or on my feet, it’s very incapacitating
yes, fatigue is extremely common, Carol. Low grade fever or fatigue are usually considered evidence of the inflammation / excess cytokines in the bloodstream like you have if you had a flu or something. You can read some articles on fatigue here: https://www.rawarrior.com/tag/rheumatoid-arthritis-fatigue/
(I got that link by clicking on the Tags List and scrolling down. There are topics you can click on.)
Hi,
I am a 35-year-old woman who, at 23, was diagnosed with seronegative arthritis, since I tested negative for the RA factor. At 23 I was just getting through my third arthroscopic surgery since my 12th birthday, this time on my right knee. I went on Azulfidine, 6 pills a day, for 2 years. By 25, the synovial inflammation and swelling was back (same knee) and I had to have surgery again. I refused to take Methotrexate.
These surgeries have given me 5-6 year remissions (save for the years 23-25, when I was on Azulfidine to put the disease in remission). Last week, I had my 6th.
My problem is only in my knee, and only one knee at a time. Usually after surgery, both will kind of flare up during rehab, but soon all symptoms disappear for years. I’ve always tolerated the surgery well.
I know I cant go on having surgeries forever, but I wanted to keep the window open for another child in a few years. I guess I’m also really scared at the possibility of Methotrexate, since my problem only affects one knee at a time. Do I want to exchange one set of problems for (potentially) several others?
Debra, if you want to have a child, that’s certainly your right to put that as a priority. Most say that 90 days is sufficient for clearing out the mtx from your cells, but I understand your caution. Childbirth can trigger a more severe stage of the disease or a flare period, but we are all different in the pattern of how the RA will behave. No one knows whether your disease will stay in the knees or become systemic or affect other joints. Mtx may help prevent that – but even that is not certain. You have to live your life, and your doc and others should support that. I hope they are 🙂 Good luck with your decisions.
I woke up one morning, and thought I had banged my big toe somehow in the night and broke it. A few days later it happened on the other foot. I couldn’t imagine how I could have done it to both but couldn’t think of anything else it could be. I even got tested for gout. It wasn’t until several months later that the hands acted up. Now that I’m on meds, the hands are better but the feet are painful and messed up. I sure hope doctors begin to identify this area sooner.
HI, Reading RA Warrior has really helped me. I’m an Orthpaedic R.N. Rheumatoid is not an unfamiliar condition, I work with patients with it on a daily basis on an arthroplasty ward, one of my best friends has it, I NEVER for one minute thought I would get it!!
I think I must have started a 3-4 years ago and, being a “good” nurse diagnosed my self with other things.
My gt toes would, without explanation, become extremely painful, so painful I couldn’t put weight through them, it would pass–perhaps I had a touch of gout–take some painkillers, cut the red wine and red meats!!
Then my ankles stated getting sore and little “pads” of swelling appeared–it’s hot on the ward and we are super busy, put the feet up.
The little joints of my hands were sore intermittently and I had to get a bigger wedding ring as my finger went blue at work on day when my knuckle swelled, my hands were also very
stiff on a morning, I was opening the door handles with 2 hands, one wouldn’t do it, and I got a gadget for opening screw caps cos that was sore to do, at work I just got others to unscrew venflon caps and med bottles when I couldn’t—but hey, when I was a young adult I had worked in a factory, my hands were wet and cold all the time, the osteo, I was expecting in my hands was kicking in!!
2 years ago my feet were getting really sore–must be plantar fascitis, similar symptoms, one of my consultant colleagues ordered me some insoles, they helped a bit, but then the pain got gradually worse, until.. getting up onto egg shells a rocks and walking on my heals wasn’t funny any more, my feet were bad enough to make me cry–finally went to the doctor who ordered a RF and ESR blood test, they were both mildy positive, he wasn’t convinced gave me pain killers and told me to come back for a repeat test a few weeks later, I did ESR ok and RF still mildly up, he reffered me to rheumatologist, waited a number of weeks then saw him, he thought it was highly likely to be RA (i could have kissed him cos now I knew what I was dealing with) he sent me to have u/s on my hands and feet which confirmed synovitis and starts of some bone erosion, my next appointment is 28 Oct..meanwhile…. I had a flare up, 3 Fridays ago I was almost in tears at work my feet were so stiff and painful, one of the girls who’s sister has RA told me to pop and see the RA nurses in their clinic to see if they could suggest something, so off I went, they were lovely, they got the registrar to review my scans and results, he confirmed the diagnosis and I got a call to come down and get a depo injection which would calm the symptoms, she also gave me information leaflets, talked to me about the meds and was brilliant. She was going to talk to my consultant on the following Monday, in the meantime go home, rest up the weekend and she would contact me. I was started on methotrexate and folic acid this week (no side effects–yet!) the depo has really calmed the symptoms, and think the mxt is starting to work, my feet and hands aren’t quite as stiff and the pain has subsided.
Reading through RA warrior I also have recognised another symptom, my eyes have been playing up, some times runny though feeling dry and scratchy, even my optician said their was mild inflammation and scratches, I told him what I had experienced and that I had been rubbing a lot, he prescribed some drops which settled them down, but reading a story on here I know the symptoms weren’t coincidental!
and so my journey commences..
I look forward to learning and sharing with you all
Carol
Dear Carol,
Thank You for taking time to type all of that! We know it’s helpful to others who come along looking for help. So was it about 2 years of misc. symptoms before it was clear to you? When was it clear to you that it was RA?
If you’d like, it could easily be expanded into an onset story for th RA Onset Story Project. You can clikc on RA Stories on the menu – if you havne’t found it. If you’d like to do that, please paste it with any changes into an email to me and I’ll reply with the next step in the process.
Hi Kelly,
Thinking about it I suppose my first symptom started about 3-3 1/2 years ago, I suspected RA about a little over a year ago but was sort of in denial as I have quite bad osteo and had just had 2 surgeries on my knee (I am 51), I went to the doctors in the end because it was starting to interfere with my day to day activities. I was getting unduly fatigued and as I’m on my feet most of the 8 hours I’m at work, things like housework were getting on top of me and they never had been a problem before. I guess I just got fed up and without saying what I suspected went and sought help. I don’t feel frightened at all as through my work I know about the treatments and what to expect, I do feel daunted though and worried about my job and what I will need to do on “bad” days. But lucky because the RA nurses at my hospital are caring and brilliant and right there.
I’m not very computer technical so not sure about how to go about your suggestion
On the top menu of this website, it says RA Stories. If you click there, it will lead you to a page with an explanation of the story project and names of the stories you can click and read. Most people really love them.
I had just noticed that your comment was about as long and thorough as a story already, so if you wanted to be part of it, you could let me know. To explain better what I said before: You can email me at kelly@www.rawarrior.com with whatever version of the story you want, if you’d like to. To save what you wrote here, you can copy it. You can copy anything on this screen or any screen by holding down your left mouse clicker and drawing it over the words. Then they are highlighted. Then you right-click the mouse and choose “copy” – then you go to a Word document page or a new email page and right-click again. This time choose “paste.” So then whatever you copied gets pasted into the other page you are on. I hope that’s what you meant. I just noticed you worked so hard on the story that it would be nice if others read it. We do protect identity as you can see when you look at the other stories.
I’m glad to hear that you will get good care. I hope the treatments give you good relief so you can keep doing what you love.
I know where you’re coming from. My feet began hurting when I was young also, it felt like I had sharp daggers stuck in my heels. I went to several drs. for many years, and no one picked up the idea that I might have RA. Disease became full blown 3 yrs. ago, and it still took 3 specialists to try and diagnose me, over a period of 18 months. Luckily, I have minimal damage to my hands, none on my feet, but I do have a lot of good days and bad days!
Janice
My first sympton was my feet as well
My 1st symptom was a gnawing pain in my left forearm. Went to the Dr. and they said it was sprained. Went to another Dr. who ordered blod tests that confirmed his diagnosis of RA. I currently have the deformed hands, sore knees, Sjogrens Disease and deformed toes…
So thinking back I remember I was a sophomore in college 2002(late in life student at age 31) & I started having pain in my sternum, specifically at the very top left, below the collarbone. It was sharp and unrelenting at times & I noticed a nodule there as well. I was also having a lot of aches & pains almost everywhere- mainly in my knees, feet, wrists, elbows, neck, back and shoulders too. I went to my GP, God bless his soul (Dr. Chris Smith RIP) and he began the series of labs & xrays that gave me the dx of RA. My Rf, SED rate and ANA were all elevated. Bloods showed seropositive. I can’t remember now what other labs he did- He was so thorough in getting the correct diagnosis to start treatment. He understood what I was going through & was one of the few drs in this world who care about the patient.
I started taking mtx & prednisone & while those did alleviate the pain, they produced a lot of side effects that were too adverse for me to continue taking them so I had to go off of those after about 3 months. I then went on plaquenil with some low dose pred for another uhmm, 4-6 months (?). My memory fails me so often these days.
Anyway, my wonderful doctor had to retire bc of his own illness and i went to the rheum doc from hell 2 years after I was diagnosed. He ran labs & then my Rf wasn’t as elevated & I tested seronegative. SED was still elevated – However, since I had gained weight with the prednisone previously (how? idk, no appetite- bad diet) and I did not look like i had RA, i.e. no obvious swelling, deformities, etc etc etc.. Rheum doc (I use that title loosely) concluded I was not in pain, I was depressed, clearly seeking drugs to feed my inner junkie, and concluded I had Fibro to which he said, “There’s nothing I can do for you.”
So needless to say I’ve been gun shy about finding another rheumy since then (& no insurance 😉 but I sought out a pain management specialist instead- & went into denial that I had RA.
I know I have RA; no denying it any longer. It has spread to every joint in my body. My hips have gotten hit hard, hands & feet swell now, daggers shoot through my body like hot pokers.
The TMJ was affected when I was 15- still locks up occasionally & gets stiff,snap-crackle-pop…
My shins have always given me problems too- interesting how everyone has something in common with this RA Monster? Actually, pretty much each time I can move you can hear me “snap-groan-crackle-moan-pop-ouch…” Repeat 😉 :laugh: or 😥 I’d rather laugh!
Bless you all,
Danice
I forgot to mention that in the last 6 months i have lost considerable weight- Not trying to and I’m eating normally.
I’ve lost over 25 lbs & it’s really alarming. I’m starting to look like a scarecrow – esp with the hair loss too (lol)! So I definitely think with all the other symptoms, this flare is the one that’s not going to go away like the others since dx.
Just have to try to figure out how to get thee self to a dr. Please pray that I get disability soon & can get a treatment. Thank you all for being there & I wish you didn’t have to be.. :heartbreaking:
First symptoms were immovable shoulders and knees and profuse sweating however about 5 years before this I had a long period of being unable to speak loudly or shout (I had been trying to yodel!). Perhaps it was just damage rather than an early RA symptom.
My first RA symptoms were pain and swelling in my feet, which got better after a couple of weeks. I chalked it up to travel and a change of climate. Then about a year later, my shoulders started to hurt badly, then my thumbs and wrists. That, too, went away after awhile, then I had an accident which broke my coccyx and injured two discs. About six months later, I had pain all over my body, IBS symptoms, extreme fatigue. Drs. ran many tests, the only thing out of line was a very high sed rate. It was decided that I had fibro and IBS. I just kept going for years, having flares and then feeling a little better. About three years ago my hands swelled and my foot pain and swelling came back big time. Tests showed very high CRP and ESR, nothing else. finally, after a bunch of other symptoms – Sjogren’s etc, my PCP suggested I see a rheumy. Xrays and ultrasound confirmed the RA and IT ONLY TOOK 25 YEARS TO GET A DIAGNOSIS!
Now on MTX and folic acid, Vit D3, fish oil, Vit E, etc, I am beginning to feel a little better and have hope for the future.
I was diagnose this week with RA. In February I woke one morning to swollen hands, feet, ankles, wrists, etc. That was the start of looking for medical help. However, I had pain and swelling in my feet along with significant fatigue for over a year but this foot pain was overshadowed/masked by another health issue and treatment for that issue.
I had to insist on a referral to a Rheumatologist because my primary did not feel that my swelling was significant enough or classic “red and hot” swollen fingers to justify a Rheumatologist. Saw the first Rheumatologist 3 times and she rarely looked up from her computer. Not surprisingly, no diagnosis and no treatment. I almost gave up but decided through encouragement of a wonderful Nurse Pratitioner to try another Rheumatologist. Thank God! Now, I know the enemy and can start to fight back.
I have been recently diagnosed with RA with value 16…I had pain in my ankles,toes,shoulder,wrist,palm,fingers,elbow…I was shocked…I am married for 2 yrs and dont have a kid…will RA effect my pregnancy…I am really worried about this…I have so many questions in my mind…help me out…do i need to take medications life long…will i die soon…I have lovable parents and hubby…I heard there is no cure…I am 26yrs old…
My first RA symptoms started in my left shoulder. I thought I had pulled a muscle and that shoulder gave me such a nagging pain. After the shoulder, I noticed distinct changes in my energy levels. I was in university at the time and feeling like a needed a rest in mid day…not like me at all! The doctor on campus found that I had an enlarged spleen and said that I probably had a virus. These unusual energy shifts came on and off for about 5 years. I also could not tolerate drinking any alcohol and I had to quit smoking because they both felt so toxic to me. Then, when I was working as a teacher, I had what I thought was a flu bug that I couldn’t shake for about a month. After this malaise one day, I just could not get out of bed, in excruciating generalized pain and stiffness so bad! I ended up in hospital for 4 weeks and was diagnosed with RA. That was 21 years ago. I was 29 at diagosis and I’m 51 now. The RA attacks mainly my hands, feet, left shoulder, large spleen (although for some reason, rheumy does not think it’s Felty’s) larynx, achilles tendons, large nodules on fingers and toes, wrists, ankles and self-esteem. I am on disability now but I managed to continue teaching for 26 years, although some of those years was half-time…through the sheer determination and love I have for teaching. RA is a thief and all these years, I managed to be fairly upbeat and I coped well. After 21 years, I am grieving all I have lost…all that could have been but for the RA. This is surprising me.
My first symptoms came years before my diagnosis. But it was my hands that led to the diagnosis. I would develop bronchitis and pneumonia 2 to 4 times a year, which led to pleurisy. I also was developed cardiomyopathy which the doctors could only explain as a viral infection gone bad. Looking back, I know it was the RA. Now if my family could understand just what this disease is and just how much it affects me, and just how darn painful it is.
You know thinking about it, after reading up, I have had the symptoms on and off for at least 4-5 years but they got put down to lots of other things! Now it’s diagnosed I can know what’s happening and while being uncomfortable and “blue” at least now I know why!! I’ve been blaming the latest steroids on feeling crap these last couple of days but this morning I’ve woke with a stonking cold, I’m still blaming the meds for reducung my immunity though. My first day off sick directly attributed to RA and the meds :o(
I have had feet problems for years. First a Nueroma on the right foot that went away after a few years (I walked barefoot most of the time because it didn’t hurt then). Then I had the golf ball in my shoe on the left foot and they Xrayed and said it was a caulous to protect some bone injury and gave me a shoe pad. That actually went away too but I was awarded this great Hammer Toe that really changed my footwear. Now I have one on the other foot. RA was never mentioned in all those years. Now that I was diagnosed 6 weeks ago, I wonder if it wasn’t RA way back then.
My first symptom was my feet. I had so much pain. I went to a rheumadologist and she even didn’t know what I had! It took a blood test from a medical doctor who diagnosed me.
I agree with Wren Sept 8, 2009. Mine started with my left shoulder pain EXTREMELY painful. Just woke up with it one morning and could not move. Called my doctor and he said it sounded lik RA. Sure enough that was the final diagnois. That was 7 years ago and I have severe pain in my feet and wrist all the time plus it moves to other joints. So far I cannot take any meds for relief. I took Methotrexate (22.5 mg 7 Tablet weekly) for several years but had to go off of it as it was damaging my lungs. I also have COPD. I’m on 10mg prednisone right now and almost no relief. I go back to the Remy doctor next to see if we can try a new med. Very frustrating!!
Mine was rediculous swelling in my left knee with no apparent cause. All blood tests came back negative, and usually it would go away after a week or so – with or without medication. Then my right knee would feel like a screwdrive was stuck in under the patella and being twisted.
Originally diagnosed as Reactive Arthritis (but without the usual conjunctivitis and urinary tract inflammation), and later change to rheumatoid (but without the usual symmetry or hand involvement).
I guess I’ve never done anything the “usual” way… 😉
I tried going off medication other than prednisone to try to have a second child, but ended up in a wheelchair, with both knees, both ankles, back, neck, jaw, wrists and fingers all involved, and a fever just for laughs.
Oddly enough, having both knees drained at the Emergency department brought the fever down instantly. They really didn’t want to do the procedure though…
At age 28, my first symptom was severe right elbow pain and stiffness. It got so bad that my I could not straighten my arm. I also had very dry eyes. This went on for a while with various diagnosis. Then my ankle was hit with terrible swelling and pain. In quick succession my other ankle, elbow and both knees became painful and swollen – so much so that I could no longer run and could just hobble to walk. It was not until my jaw became so swollen and painful that my teeth didn’t come together that I was diagnosed with RA. That was 19 years ago. By taking an unconventional approach in treatment with a couple of medications taken over a few month time period, I believe the progression was stopped. I just now am having issues with my hands and one shoulder. So, my first symptoms didn’t fit the usual either. I’m lucky my feet have stayed okay.
One night I went to bed a normal 9 year old child. The next day I got up with throbbing ankles. I am now 47 and have been battling RA, as it waxes and wanes, most of my life. I was 35 before a real diagnosis was made. I am currently fighting the worst flare of RA I have ever had with the help of Methorexate & Plaquenil.
My first symptoms were my right thumb felt jammed, but being as I was in the photography business and used my hands for numerous reasons daily i just decided to rest it for a few days. This was January of 2010 my shoulder started having horrible pain first thing in the mornings me being a self diagnosis person I ruled it out to be the way I was sleeping. Over time it got worse I ended up blaming stress and sleep besides I have 3 smalls kids I always pick up which is very hard and sometimes impossible to do now. Finally it got so horrible and I’m only 24u years old I gave in and went to the doctor this was April 2011 a year and some months later. I was diagnosed with a spinal neck injury and given different medications none worked for pain so in july our family went on a 5 day cruise it was horrible I couldn’t enjoy nothing with my kids because the pain had gotten serious. Returned home and decided I’d take a warm bath and luckily my sister was here to help me back out because my entire body stiffened up. She drove me to the emergency room and after a few hours there and some relief I was sent to a rheumatoligist.. I still have horrible flare ups but little by little I’m improving
As a person with many years of medical occupation, I had suspicions of what was going on with my joints. I ignored the pain for a long time, I guess partially pushing it to the fact of being overworked and getting older. But when my fingers would be burning hot, red, swollen and throb waking in the morning, or when my grip was not there even though I swear I was trying. But the funny thing about it all, my own long time MD said, ” oh no, you don’t have to worry, you don’t have RA”. Weeks went by and the pain, swelling, redness i my fingers were so bad, I would hide my hands so no one would shake my hand. Then I had an appt to see my GYN MD and she saw my fingers. Immediately, she said, you had better get in to see a rheumatologist. It took him like 2 minutes of looking at my fingers, hearing about my toes; to say, yes, you have RA. That was a year ago. Things are better with the meds but still those flare ups! and accepting what I have to live with. That is tough!! I talk to my joints! My way of dealing with the pain.
Thanks
I’m not actually sure what my 1st symptoms was. I was just diagnosed this past September. At that time I had swelling in my left hand, both feet and ankles and of course pain. I had to have 2 rounds of prednesone packs then had methotrexate(2.5mg..5 pills 1X/weekly) for it to all go down and the pain to get better. In looking back several years. I had some eye issues that my opthomologist said was from the aging process…folks do get “dry eye” with the aging process. Then about 3 or 4 years ago I had some, what seemed like a pinched nerve in my neck that radiated into my arm and hand. My hand swelled and I couldn’t make a fist. A bit later after that all had subsided I would get intermittent pain in both my hands but I attributed it to possible osteoarthritis. This pain was bad enough to wake me from my sleep at night. I’m thinking now these were all early symptoms of my R.A. Hope this helps other folks. Oh…I might add that I had a practioner who seemed to be very observant. He’s a D.O. and I’d gone in for a “manipulation” thinking that his expertise might help some shoulder/neck pain issues. In taking my history etc. he asked me if anyone had ever mentioned R.A. to me—I told him “no!” He’s the one who ordered the blood tests that sent me to the rheumatologist who also ordered further blood tests.
My first symptom started in my feet as well. 18 years ago.
My immune system was shocked by having an abscesed tooth pulled, no antibiotics were administered for the infection,
Then it begin to spread quickly to hands & elbows, then to the eyes. I have tubes in my tear ducts to help but are a nightmare I have to wear sunglasses outside so I won’t tear down my make-up. Now it’s in my knees.
I have the typical symptoms which for now have only effected my hands. About 12 years ago I went to a Dr. for other reasons. He did blood tests and told me I have the RA factor in my blood. That sat in the back of my mind for all these years. One time I drove from MN to CO and noticed that my hands got stiff holding the steering wheel. It did not occur to me that it might be a symptom of RA. In the past few years I have been treated for “trigger fingers”. I even had surgery on one thumb to relieve the pain. The surgery is the only thing that has helped on a permanent basis (so far anyway). Fortunately on my last visit to the hand Dr. she ordered blood tests. They came back positive for the RA factor and a high SED rate. So now I am in the process of finding a highly qualified rheumatologist. My hand Dr. is helping with this search. After reading the posts on this website I’m thinking that so far I am pretty lucky. My symptoms really flared up this fall when I started knitting on a daily basis. I don’t want to quit doing that. Would stopping that help my situation?
I believe that my first symptoms appeared years before diagnosis. Sharp shooting pain in an ankle about ten years ago, treated with Relafen for a while and it went away. I think I was tested then for RA but was negative. Then, about six months before diagnosis I had foot pain in the area under the toes which had been going on for months. I finally made an appointment with the foot dr. He diagnoses neuromas in the right foot. At the same time there was a lump on the back of my achilles. He gave me a steroid shot in the foot and the following week another. Treated the lump by making me buy good running shoes. The very same day that I had the appointment with him, I woke up with shoulder pain…could not raise my arm at all. Took the day off work since I could not drive my school bus. Went to the GP dr and he gave me a steroid shot in the shoulder calling it bicipital bursitis. It did not occur to either one that the two could be related but my RA dr believes that they were from RA. I finally got diagnosed when I was having trouble with my right knee. The new GP I went to decided to run the blood test and it turned out to be at 600. The years before I have had pain off and on in my fingers and toes, but not my wrists. However, I have since developed pain in the wrists. I am having good results with the Methotrexate, and have added Simponi too. Not much pain at all, however, ended up in the hosptital Christmas day with atypical double pneumonia! I believe that this was from taking Simponi, so now not sure what I am going to do.