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
Wow – now that I think back…seems like I had my first symptoms maybe 30 years ago, but they were so intermittant. And they were in my feet, also. (To think I was diagnosed 2 years ago this Augus)t. A little segue – I just love when RA is considered a “condition.” As far as I’m concerned, it’s a disease, like cancer is a disease.
Wow. Are you saying your feet never went back to “normal”? I’ve had RA for a little more than a year. I waited too long to start any treatment aside from prednisone. MTX has helped tremendously, but I fear that I’ve done permanent damage to my knee. It was terribly swollen for months & now I’m unable to straighten my leg. I was, and still am hopeful that with some PT I will be able to walk normally again. Now I’m starting to think I may be deluding myself.
I believe I ‘caught’ RA. I had taken my son and his friend camping mid July for 2 nights and it was very cold at night. Driving home I noticed my neck getting sore and found a lump on the side of my neck. I had the worst stiff neck for a week. Then within a week or so I noticed some swelling in my elbow after bumping it and it didn’t heal fast. Then my left foot and then my right foot a week later. I was walking on my heels. Doctor didn’t seem too concerned. Several years later I moved and was under a lot of stress at work and then I got fatigued and very sore all over, could not stand up or grab anything to lift myself up. My son had to help me to my feet and I could only move slowly in much pain. Found a new doctor who took the time to listen and he wrote everything down, checked me all over and said he was quite certain it was RA. He gave me a prescription for an anti-inflammatory, sent me for bloodwork and confirmed an appointment with a rheumatologist all in the one appointment. I felt better just talking to him because he took the time, almost an hour in his office. The rheumatologist confirmed RA. I’ve had it for about 18 years and I’m 60 now. I get flare ups and can’t work. As for nodules, I had one on my left elbow and one in front of it a few inches away and one on my right hand, but I kept crunching and squeezing them or pressing on them and worked them out and they have not come back. Took about a week to get rid of them. My wrists are locked, frozen right shoulder, swollen ankles and knees, etc. feel stiff and sore all over a lot. Like the other lady said my hips seem okay so far…
My firt symtoms was my hands/wrist. Since I am a Nurse I type a lot and I found out that when typing my wrist would really hurt. And they still do. Then it was my feet,knees and elbows. Now everything hurts. I was wrongfully diagnoised as a probable MS patient. Until I found a Nurologist who told me to go to a Rheumatoid Dr. HE was the only one who ever told me to do this after all these years. So now Im on injections of Humaria,Methtrixate,Vits,and a few more I cant name off hand…I feel a little better but I still hurt by days end…..Sue
Hi Kelly, and everyone!
I was diagnosed with RA two days ago on the basis of a positive CCP, family history, and “non-specific” joint pains, meaning that none of my joints have swollen and they aren’t really tender, either – just hurt.
It’s really hard to figure out my first symptoms. In 2006, at 27, I developed fatigue. One morning I woke up to terrible hip pain. I couldn’t move my left leg to the side. That lasted a few days. I thought it was a repetitive injury from ballet. That hip was always “bad” – inflexible and popping. Then again – maybe it started all those years earlier? Who knows? Anyway, the pain went away after a few days and I forgot about it.
2007, I developed TMJ. It was very painful and my jaw would independently spasm shut, clanging my teeth together. I was glad my tongue never got in the way! I got a mouth guard at the dentist and that has returned it to my normal TMJ that I’ve had since childhood.
2008, I developed carpal tunnel. It was so bad that I couldn’t hold a cup of tea in my right hand. The left also hurt. My friend who is an OT taught me some exercises and told me to wear a brace at night.
For the next few years there were no new developments of note. However, now that I’ve read these comments, I remember several times walking on the beach and my feet hurt. I thought it was really weird that even that would hurt my feet! Also my feet would often hurt first thing in the morning when they hit the floor. However, as I usually wore slippers I didn’t notice it that often.
Spring of 2011, I woke up one morning and my right knee would not unbend. After a half hour or so of wiggling it, which hurt like heck, I got out of bed. It loosened up over the course of the day. Then in June I was on a seven-mile hike when both knees started up. The downhill was brutal! I hiked the last three miles bent over at the waist, hands on my thighs, trying to distribute my weight so as to lessen the impact. Over the course of last summer and fall the pain in my hips and knees became much more frequent. I had to get a memory foam topper for my bed in order to sleep. The fatigue also became disabling, to the point where I had to cut my activities to the bare minimum so I could keep working.
This summer my carpal tunnel has been acting up again, along with other pain in my wrists and hands. I had one period where my hands were stiff for a couple of weeks, and I realized how this could get seriously disabling. By that point I had an appointment scheduled with the rheumy.
During the last few years I have also developed dry eyes and inflammation of the parotid gland – so probably Sjogren’s, too.
I start Plaquenil tomorrow.
Question: I told my rheumy that my most consistent problem joints have been my hips. She said, “That’s not RA. RA doesn’t effect the hips until later in the disease.” She did not examine my hips at all. Should I be concerned about this?
By the way, Kelly, my rheumy said that she was recently at a rheumy conference and a case like mine was discussed: family history of RA, +CCP, and non-specific joint pain. She said that, when asked to raise their hands as to what to do with such a patient, two-thirds raised their hands to Plaquenil. I don’t know what you think about that but I thought you’d like to know.
Also, another question: What is the difference between pre-clinical and early RA?
I don’t know if this is the right place for questions. 😀
I’ll be glad to try to help, Nichole. I dont think those terms mean the same thing to each person – but here is what I understand – the word “clinical” refers to the symptoms that the dr perceives in the clinic and judges according to the dx criteria – so clinical would refer to what they “detect” in an exam and “pre-clinical” would mean that in their opinion, there are NOT symptoms yet and not diagnosed yet. “Early RA” would refer to RA that is actually diagnosed early. That is done through certain programs for research. Diagnosing “early RA” is not generally done in the average clinic. Any RA diagnosis is still difficult to obtain early in the average clinic because the diagnostic criteria do not identify “early RA” in all people – you might want to search the word “criteria” here in the searchbox up on the right to read more on that.
Yes!! You should be. Her facts are wrong – any joint can be affected in any order. And she is wrong to not examine you or to dismiss your symptoms. You certainly know more than anyone else which joints are affected.
By the way, my hips were one of the joints affected first – with periodic flares over 25 yrs before I was diagnosed.
Thanks, Kelly.
Well, at this point I am just glad to have a dx and started treatment. I hope that the Plaquenil will be enough for now. I suppose it’s possible that my hips could be something else. My mom has problems with her hips and no RA as far as I know. On the other hand, mine bother me enough to restrict my activity so I would like to know what’s going on with them.
Neck!
for me the pain started in my feet – I am now 52 yrs old – have had foot pain since I was 12 yrs old – had my first foot surgery on my right foot at 15. I was officially diagnosed 22 yrs ago… and even with the medications I am on – methotrexate and Humira I am getting worse. Just had surgery on my left foot in June and I know I am in for more.
This post really struck me because I know exactly what you mean by feeling you were on rocks all the time. That;s exactly how I described it.
Hi,
First thanks Kelly for doing what you do. I am in Australia, and yours is so informative and the sharing is really inspiring. I had surgery on left foot at 15, hard nodule removed with tendons and nerves, so quite a deformed looking foot from then on.At age 40, painful ankle, sore wrists and very tired, finally sent to a rheumatologist who looked at my feet and was cross to think i had not been referred till now.He asked why i hadn’t seen about them, my answer was as a nurse my feet always hurt and other nurses said the same thing.Tried sulfasalazine, worked well then my liver tests shot up, tried plaquenil, worked ok, then 2 years later, more deformity in hands, doubled the dose and i was covered in a rash. Painful shoulder, unable to work, i agreed to methotrexate. Finally gave up work 2 years ago and have been happier, not that terrible dread of the alarm going off and wondering if i could walk corridors all day and drive home.One day i couldn’t turn my key in the ignition.The humiliation of your body letting you down was the worst.
My rheumatolgist thought i was probably suffering RA symptoms for many years before i got to him and looking back i would get aching joints, fatigue, reluctance to go out out when i’d just made it home etc.Being a nurse i should have realised something was wrong.I am now 54 and do the best i can.If i am tired, i make excuses, i am now good at that.
Now i pace myself, walk the beach, even manage a bike ride,where i live is very flat,so its not a huge challenge.
My rheumatologist is a 4 hour drive away, so i only see him once a year, my gp is very understanding and says i shouldn’t work again.
So its good to hear the stories on your site and not feel so isolated with this very changing disease.
My first symptom was morning stiffness , and a swollen joint which i thought was work related injury, i remember having a catch with my son, and i said i can;t do this, and i thought i did something at work, but what bought me to the DR office was stiffness,i had to roll out of bed, The kids would laugh because they are kids and i would try to joke and say i’m getting old even though i was 32, but that is what bought me to the doctors
My first symptoms were in my hands. they were swollen and in much pain.
Not sure where to start ! My sed rate is 94 suposed to be 0- 20. ra range is 296 suposed to be 0-20 . I AM NOT A HIPERCONDREACT ! But sure sounds that way . in april of 10 I was in and out of doctors 9 times going to differnt ones. 5 specialist. I have diabetes . high bp high cholesterol. bad thyroid, enlarged sleen with an enlarged limp noid , enlarged liver with enlarged limp noid. O A , extreme lower back pain, 6 stents 5 in heart 1 in corted artery grandmal epilepcy ( sence age 15) . everything except the epilepcy and high cholesterol started after I qyuit smoking for awhile. there are things I should not eat for each thing wrong with me. Plus a mile long list of things I am alergic to. plus a mile long list of food I am alergic to . example … fish good for cholesterol. shoot my bp up in the 160’s 🙁 I love fish . I have an appt. with a r a doc in jan. 13 p.s. platelets run from 84 to 124 suposed to be 400 . I keep a copy of all my blood test . my pain with ra started in ball of foot . then went to edge of finger nail. then to finger tips . I take folic acid and vit. b 12 eases my pain big time . CAN NOT TAKE STRONG PAIN MEDS OR MOST R A MEDS . am alergic to latex. and the last r a meds they put me on started with an a . brought my sugar down to 54 . I was walking sideways . family doc wanted me to take it for 2 weeks . I had 2 days left . he told me to keep taking it … not i didn’t . it is very frustrating .
I spent about 3 years in my late twenties believing the pain under both my shoulderblades was due to long hours at a typewriter. I would have occasional bouts of stiffness in my fingers on some winter mornings but when I was thirty my feet became involved with pain and swelling in my great right toe. Very quickly a seriously debilitating exhaustion set in and this sent me off to my Doctor. It took him three weeks to diagnose me as having RA and send me to a specialist.
My first symptom was pain and swelling in my left foot. It seemed to happen out of the blue. The pain was excruciating and I could barely walk on it. I went to my primary doctor, who did a battery of blood work, and an xray. She said the x-ray showed evidence of arthritis, and when my blood work came back with evidence of an autoimmune disease, and on to a rheumatologist I went. The pain quickly spread to both ankles and feet, wrists, fingers, and now elbows, shoulders, and neck. This has all hit me in the last 3 months, and has been overwhelming.
Pingback: Tracking Symptoms of Rheumatoid Arthritis « The Lone Marble
my wrists, then my hands, then my feet
Very interesting. In the process of being diagnosed. My story is similar to most, it is amazing when you realize how long you have battled this disease when the diagnosis stares you in the face.
I have spent many years avoiding pain, hiding pain, and doing whatever I could do control the pain. Wrist braces, ibuprofen, neck heat packs, knee braces, and just generally not doing anything that put me in that “frozen shoulder” state.
I have learned that it is not typical to feel like a 90 year old – I was overjoyed to see others on here post that they felt that way – only because it gives substance to my feellings.
I’m afraid. I’m mad. I’m 53 and I don’t deserve this. My husband is trying to be understanding – my children act interested – I don’t think anybody actually knows or understands. But, at least they try.
I was just put on Plaquenol (sp?), low does prednisone (it was high dose prednisone that stopped my flare 600 RA factor- really felt good and realized then that the pain i had been feeling was NOT right) and calcium/vitamin d. Two days later woke up with a reaction – red cheeks, shortness of breath. It’s Christmas. No docs around for a few days, so my path to remission is put off for a while.
One thing that scared me reading your posts, I anticipate that the medication will put me in remission and I won’t feel as bad – I am so hoping that my goals come true. But, reading that you battle this for years after diagnosis scares me. Chin up, eh?
I have just had my 1st visit with the RA Dr. last week. He told me I have aggressive RA and he wants to treat it as such. My symptoms started as what I thought were side effects from Lyrica ( I was taking it for nerve damage in my foot and big toe) I hurt everywhere neck, back, knees,(all I assumed from walking “funny” for 2 years while dealing with the foot injury) then it moved to my elbows and hands.
After another round of blood work, I will start low dose chemo. Not sure how I feel about this.
I am newly diagnosed (on 10/29 – Hurricane Sandy and RA all in one day). I have been having heel pain upon getting out of bed for some time. In the spring I had a horrible “cold/flu” and lost my voice for about a week. It still is scratchy most of the time. I then had a very painful sore throat which was diagnosed as an infected thyroid, followed by an ultrasound and every thyroid test known which of course found nothing. I now know these were both RA. I then started having as I called it my moving pain. It was like a charlie horse but was in my thighs or upper arms. The pain was like nothing I have ever experienced. In the summer my fingers started to become stiff in the morning and I was fatigued. I was taking naps during the day on the weekends. Here’s the best part – I went to a rheumi first – I thought is might be fibro as I have a friend with it or even RA – my mom has had for over 40 years. I went to one with the best orthopedic group in the area – SHE REFUSED TO TEST ME!!! She had me do a few resistance pushes on my hands and told me I had electrolyte imbalance and was dehydrated (it was July so it had been hot. She said my if I had RA my stiffness would last longer. Then the moving pain happened more often and my feet and ankles swelled. My fingers were swollen and I could not close them. I began to have knee pain and stiffness so bad I could not do stairs or even sit on the toilet – I would just drop. My husband and I joked that one morning he would find me wedged between the toilet and the tub because I had missed my mark 🙂 I couldn’t hold a pen, lift my arms to dress and blow drying my hair was impossible. I finally went to my GP who suspected Lyme (I live in the county with the highest rate in the country) or RA but when I told him of the family history he was convinced before the bloodwork. I have started seeing my mom’s rheumi who is treating the RA very aggressively so I don’t end up like my mom who has severe permanent joint damage. I am just so disturbed that a young rheumi would just dismiss me and let my disease progess three extra months.
My lower back has been a problem since my early 20’s while I was in the Marine Reserves.(1974-80) My RA was diagnosed in 2007 because I had complained about bad shoulder and neck pain. My hands also hurt so much I couldn’t tie flies or use my PC at work. My left hand squeaked like a rusty hinge when I bent my fingers. My lower back hurt worse than it ever had. And my knees where hot and big as grapefruit, full of puffy stuff and hard to bend. They didn’t hurt as much as stung kinda like after hurt if that makes any sense. Mrs Super RA Doc did anti ccp and it came back at 213. She immediately put me on high dose prednosone, methotrexate, pain meds, and got my on the list for biologics. What I getting at is I know pain, I’ve had three lambinectomies L3,4,&5 and I’ve been bent sideways for weeks at a time before that due to pain there. I’ve lived with gout since 1983,I don’t get attacks anymore for some reason. After enduring all of that for some 26 years The RA stopped me cold.
-Roger
thank you for posting Roger. It is so important that people read this and realize that this disease strikes strong Marines like you and not just what they consider “weak middle-aged women with low pain tolerance.” I’ve heard hundreds of stories like yours – that you endured ruthless pain in your life – that it was not as bad as the symptoms of RA. Unfortunately, that’s true for most patients. We need better treatments.
Hey! I have those feet. Feels like walking in cement shoes, sometimes on rocks, other times almost no feeling at all. 1 toe is completely hammertoed. Same toe on other foot almost there. No more heels for me, Mary Janes all the way now. Walk right out of thongs/flip-flops or wedges. As long as they’re warm, pretty much bearable. Swelling comes and goes.
My first symptom was actually recurring iritis. The third time that I had it, my ophthalmolgist ordered blood work and told me that there had to be something going on because “nobody gets iritis 3 times without an autoimmune disorder.” That was 2 1/2 years ago. I was diagnosed last week.
I think I’ve had RA since my teens or early twenties. I could always feel my hands get really stiff while dusting or cleaning windows. I never really gave it much thought as it never got bad. The RA hit my feet hard though. I started with swelling and pain for a couple of years and then grew a nodule on the back of my heel. It was such a nuisance as I had a problem with shoes. I finally decided to have the growth removed in 2001. The pathology report returned a finding of a rheumatoid nodule. It measured 2.4×1.5x.06 cm and was filled with chronic imflammatory cells. My RF was normal so little was done. It wasn’t until it got worse in 2006 so a MRI was done on both feet. Osseous erosion was identified in my right foot. It was then that I was referred to a rheumatologist and aggressive treatment began. It’s funny, I am sero negative and get nodules. I have had 4 nodules on my fingers but they are just now starting to really bother me. I have RA feet and I feel it in every step I take.
My symptoms were atypical and sporadic. The actual incident that finally led to further testing was when I woke up one morning and could not bear weight on my L foot. It was red, swollen and extremely painful. Went to my primary MD who declared “you’re foot is broke” and sent me for an x-ray. When the x-ray was negative for a fracture, she sent me to a podiatrist. I endured about a year of freq. podiatry visits for ‘wrapping’ of my foot and on and off steroids w/o an actual diagnosis ever being made. My foot would get better but then swell up and require steroids, the cycle repeated. Finally, podiatrist ordered labs and said, “I can’t help you, you need a rheumatologist d/t positive RF”. My primary MD disagreed but I convinced her to allow the referral and reminded her of incidents in the past when my wrists froze or when I couldn’t lift my l arm and there was swelling and she ordered a doppler to check for a blood clots. Finally got into a rheumatologist who of course drew more labs and reported it was highly likely I had RA. Elevated RF and anti CCP. We were conservative initially, primarily d/t my denial, and, (if I ignore it, it will most certainly go away, for I am stronger than it). Unfortunately, I would have the occasional flare up, (for lack of better terminology), a swollen and painful thumb or a couple of fingers or my L foot, (but never the right). Oral steroids usually helped and I was once again ‘cured’ (so I told myself). Even had an injection in my shoulder when I had another incident w/my shoulder and couldn’t raise my arm. Every time I went to rheumatologist he would say that I really needed to get started on routine meds, and I couldn’t continue on the steroid path that we were doing. Somehow, I still wasn’t convinced it was RA. It’s usually bilateral from the info I had read and that was rarely the case w/me. It was most often just one sided so surely it wasn’t RA. Plus, the side effects of those meds that I had read about were more than I wanted to subject myself to. Eventually the rheumy finally put his foot down and said I had to start something routinely and he was prescribing MTX. I was not at all happy, quite scared actually. (oops, I believe this has turned into more than the original intent, sorry…..)I’m just trying to say that if I do have RA….it seems to be atypical on a number of levels…..any chance an elevated/positive RF and anti CCP are indicative of something else?
I was diagnosed with RA in August 2012 after surgery for a torn meniscus in my left knee. Needless to say 5 weeks later, I was in terrible pain all over and then my right knee/leg tripled in size. Both knees were aspirated twice and tested for gout or psedo-gout before I was sent for blood tests by my orthopedic doctor. I couldn’t lift my legs to get in the shower without excuriating pain.
Prior to that I had been to at least 8 podiatrists for left foot pain for 5 years. I now have permanent join damage in my left foot. Being new to the world of RA, I am amazed at the lack of answers from the medical community. This website is the most useful tool I have found. Thanks for the wealth of information.
My feet was also the first to show the RA damage. I went from loving my feet, to hating them, in a matter of weeks. My toes were so damaged within one month, that they were literally out of joint! There was no joint left, the bones in my toes just sat next to each other. I could not wear shoes, i could not walk properly, i screamed of pain and no one understood what the fuss was about, because they couldn’t see what’s going on inside my body! My shoe size went from a no 6 to an 8 in weeks.
RA is unpredictable in my experience. One day it’s the hands, the next day it could be the feet, elbows, knees, forearms, or lower back. Most of my pain is in the hands. Thank God for the Internet, because my rheumatologist seems too busy to provide any knowledge. It also seems that joints and limbs that were, (and are), used the most also suffer the most — one day of physical work and I’m in pain for the next week at least. My biggest annoyance is the loss of muscular strength and joint mobility. However, I sent it into remission for 20 years from 1991 to 2011 by physical cleansing and fasting, and am sure that I can do it again. I eat healthy, employing as many ‘superfoods’ as I can, and try to maintain a vegetarian diet as much as possible.
I thought my first symptoms were in my wrists and fingers but when you sit back and think about it, the first symptoms I experienced a year before I was diagnosed were in my feet and ankles.
My first symptom was my left knee which blew up overnight and was so swollen. This followed a couple years of stiffness when I would sit in the bleachers on chilly nights for my kids games.
My first signs was on one side,my right hand and my shoulder,2004. I thought it was carpal tunnel and it was something I had done since I love gardening. This carried on for a couple of years then went away, then came the fatigue and feelings of the flu.I always considered my immune system strong since the ebb and flow of fatigue was intermittent,I actually thought I was one tough cookie, I beat the flu again! Then in 2010 it was no longer an ebb and flow situation, it was a constant.Then the nodules came on the same hand I thought I had carpal tunnel.Such a confusing disease.
I started seeing a rheumatologist every three or four years because I was so fearful that what I saw happen to my mother would happen to me. She began to feel the effects of RA in her 30’s – at least as far as she knew – but by the time I was in high school her hands and feet were already showing the unbelievable deformities the disease can cause. My mother later developed OA and osteoporosis, but none of that rose to the level of the pain she felt every day of her life from RA. She did methotrexate, gold shots, more aspirin than a body can take and I don’t know what else and still ended up with thumbs bent at 90 degree angles that became unusable. She finally had her right thumb knuckle removed to make it straight, but watching her try to pick up and hold anything was like watching someone working with oven mitts. Her feet – I won’t even go there. She tried everything that came along, but it was too late for her.
The point is this: As I worried about my future, she would tell me don’t assume you’ll get this, but if you ever see redness and feel burning in the joints of your hands, see a doctor right away. Don’t wait. Do not wait.
I was dx with BD back in October and although I do have symtpoms of it my biggest issues were my feet (which have been in a constant state of flaring since Sept) and my hands but up until here recently my feet have been the #1 area of pain. Started out feeling like I was walking on rocks and continued to get worse. Now they stay red and swollen on the bottoms and standing for any period is out of the question. They feel extremely hot & burn as well! My hands started the same way but haven’t been as much of a burden until now. They are following suite in the red, swollen, burning pain. Now my rheumy has dx me with RA as well even though I’ve been questioning it every since with the foot stuff. Just goes to show even docs are still stuck in denial if we aren’t book cases. He now has a different approach to treatment which I hope helps!!!
I’m learning a lot from this RA Warriors website and I thank you so much for doing this! My RA wasn’t diagnosed until August of 2012 at the age of 51. Now that I know what it is, I can say with 100% certainty that it began in my 30’s. From the list of RA symptons I’ve read about, I can date the onset back to the age of 30 when I was told I had tunnel carpel syndrome. I’ve dealt with sometimes debilitating pain in both of my wrists from that time forward (20 yrs). At the age of 35 what I now know is Scleritis (right eye) started and was misdiagnosed and progressively getting worse until it became unbearable last year. A new Opthomologist (Greenville SC area) diagnosed it immediately and this led to a fast diagnosis of RA after his referral to a rhumatologist. At the age of 38 I started having severe drops in energy. It felt like overnight someone turned off the energy switch and it’s never come back on. My family Dr tried to treat this as depression. I went into that one kicking and screaming and lasted 10 days on medication. A couple of months passed and I woke up one day convinced that I had somehow broken my wrist in my sleep. The same Dr told me that ‘now he knew why I didn’t have any energy’ – I had arthritis. This was believable because one after childhood injury after another popped into the picture in ‘flares’ of intense pain followed by regular reminders throughout the years. (The wrists are by far the worse). I settled into an acceptance that this was what was wrong. I learned to deal with pain -ans still believe I have a high tolerance to it, but the loss of use I have experienced over the years has been very emotional as I’ve raised a hearing impaired daughter who at times I cannot effectively sign with. The next changes came along gradually and none of the issues I’ve dealt with over the years were ever put together as coming from one root cause. I’ve had surgery for mild endometriosis that caused intense pain, I’ve had surgery for what was termed by the specialist as the worst case of acide reflux disease he’d ever seen (2 years of vomiting night and day until the surgery along with very expensive medicines before and since to treat it). At the age of 44 I started experiencing chest pains and was seen and tested by a cardiologist (ekgs, nuclear stress test, and a heart cath found nothing wrong with the heart). Each year the problems with fatigue have compounded to the point that I stopped making any plans at all. The disappointments of cancellations to my family and friends became unbearable. For the last 7-8 years I accepted that all I can do is work a full time career and try to manage at home. My children were still in elementary school when all of this began and they don’t have any real memories of their hyper active mother that never stopped going. They grew up never knowing what I would participate in and since none of us knew what was wrong, I know this will have long lasting effects. I am convinced now that my mother had RA too – I could write a book on her life and how it was percieved by me and my brothers, all of clueless as to what was happening. 11 months ago the same thing happened again with chest pains and all of hte same tests were done again. I will always be grateful that I had taken a job transfer from my metro Atlanta home to Greenville. The medical care is by far better than any I’ve ever experienced or heard of! After the same series of heart tests I was referred to a neurologist. They were not going to give up until they found out what was causing the chest pains. Shortly thereafter I ended up with the Scerlerist diagnosis and the RA treatments began. Just in the knick of time obviously because I’d begun to fear that I was heading to disability with no explainable reason. The bad days and extreme lack of energy had become the normal and I don’t remember the last time I felt good. It’s been years.
Raising awareness of RA, especially the early signs, means more to me that anyone can imagine. While I know that God has a plan, had a plan all along, I can only imagine how different my life and my children’s lives would have been if I’d been properly diagnosed all of those years ago. I am managing and to be honest the hardest part for me is the absolute fear of disability that comes along with the worst days of fatigue, those days when a trip to the potty is more than I can manage without dread, those days when I’d rather be thirsty a little while longer than get up and go get a drink, those days when I am just not hungry enough to do something about it, and those days when I cannot believe I’ve been in my PJ’s without a shower all day. Yes non RA sufferers – this is a very real issue that turns you into someone you absolutely are not!
I realize this is lengthy – I haven’t been talking much about this, in fact very few people are even aware of what is going on with me (you’d think after years of worrying what people think about me I would be thrilled to say – hey ya’ll – I have a diagnosis!!). I’ll use that as my excuse for pouring out my story! Stay strong RA Warriors and let’s do everything we possibly can to raise awareness of this horrible disease!!
Thanks so much for sharing your story, Debbie. You don’t need an excuse for telling it, it’s your story, it’s valid and valuable to others! But yes, it can be hard to talk about, we just get sick of living in a ‘disability bubble’ and just want to talk about ordinary stuff. Much of what you wrote struck a real chord with me xx
Can you have R.A. in your jaws?
Unfortunately yes Robert
Can you Have R.A. in your jaws.
Wow, what a fantastic web site! Thank you Kelly, I’ve learned more from a day here than in the 6 weeks since I’ve been diagnosed.
I’m 54 and I have no idea what my first RA symptoms were, which sounds strange I know. Until August 2011, I was training with a personal trainer 3 times a week and the fittest I have ever been. Then I had a car accident, hit from behind at 100km per hour. Was ok for a few days, then my neck and lower back started to hurt. Within 6 weeks I’d been diagnosed with a herniated disc in my neck and degenerative disc disease, and had a cervical spinal fusion. Things pretty much went pear shaped after that. I developed carpal tunnel in both wrists, one (one!) numb toe, tinnitus, myoclonus, excrutiating lower back and sacroiliac pain. My neurosurgeon was disbelieving – his spinal fusion looked perfect, therefore I was fine! Multiple referrals to other specialists – I’ve had nerve conduction tests, facet joint injections in my neck and lower back (ouch), injections into my sacroilliac joints (double ouch), physiotherapy, psychological therapy, hydrotherapy – every therapy known to human kind, and a few that I’m sure were just made up on the spot.
10 weeks ago, 1 year and 5 months after the accident, I was sitting on the couch, happy as Larry (whoever Larry is), and suddenly my upper arms were on fire, with a deep, burning, unbearable pain. Along with that was a sudden fatigue and weakness so severe that I literally couldn’t stand up. Blood tests, off to a rheumatologist. Tentative diagnosis, polymyalgia rheumatica – which didn’t respond to prednisolone, so this was ammended to RA. So here I am.
I don’t know if the accident exacerbated pre-existing, asymptomatic RA, or if something went haywire with my immune system during or after spinal surgery, or if I was always going to get this. Doesn’t really matter I suppose, I have it and, like we all do, I’ll deal with it. With a little help from my friends and this web site. Cheers, Beth
Pain in my feet first, which I put down to my job and bought new work boots. Then shoulder and hip pain, but only at night, so I bought a new mattress. Then sore eyes, then pain in hands and fingers. Then I had 3 minor flares a few months apart, but again I found what I thought was a rational explanation for each one.
All of this over a period of 3 to 4 years before I ran out of ‘rational’ explanations and visited my doctor. After that my diagnosis was fairly rapid and I’ve started treatment now.
I started to feel muscle weakness; I tired quickly when holding my infant son. Then, my feet would randomly swell up one day and be fine the next. I was having back pain, pain behind the knees, and then swollen knees. One night, I woke up in excruciating pain; my left arm felt like it was going to explode. Severe nerve pain, felt like ten thousand needless but with a numbness that I can’t explain, and my arm felt enormous, like it was about to burst my skin open. That happened every night for three months. A few Weeks after that started, all my symptoms progressed and joint pain hit me everywhere. Every night I would wake up writhing in pain, feeling like I had been hit by a car. Throughout the day I would have no sensation in my finger tips and could barely hold anything without breaking it or dropping it. Now, I only experience joint pain, swollen feet (hardly fit into shoes), slight tingling in hands, morning stiffness, and hair loss (recently started falling out). I’ve been treating with only natural m
My first pain was in my feet also. No swelling, just constant pain in the balls of my feet. I could not imagine walking barefoot–the pain would have been incredible. It was very painful walking with my slip on tennis shoes and it did not matter if the floor was wood, tile, carpeted or concrete. When not standing or walking, my feet would just throb. The was just the start around April 2012. About 2 weeks before Memorial Day, 2012, my right hand began hurting–intense pain that kept me awake all night. It continued to hurt the next day–all day. Then in the evening, it quit, went away as quickly as it came. Over Memorial Day weekend, 2012, it moved to my right knee. We vacationed in New York City with my niece who lives there. I could hardly walk, this time, I had swelling. Again, just for one day, then gone like it never happened. After that, it moved to my shoulder, hand, zig-zagging across my body every two weeks. I was diagnosed with RA in June 2012. I thought it was weird how it criss-crossed joints all over my body, one time on the right side, next on the left side, different joints. My advice is get answers, do not experience this intense pain anymore. If your doctor won’t refer you, find one who will. Lucky for me, my doctor told me she and her PA debated for hours about referring me. In the end, she told me they would rather refer me than regret not referring me someday. I need to tell her how thankful I am for that referral.
I run and dance will this make RA worse ?
Not generally, no. If certain joints are painful and inflamed, the rule of thumb is to rest those joints and run when they are feeling better. With any condition, pushing forcefully through pain is not usually recommended. I think that applies to RA as well.
Not generally, no. If certain joints are painful and inflamed, the rule of thumb is to rest those joints and run when they are feeling better. With any condition, pushing forcefully through pain is not usually recommended. I think that applies to RA as well.
The onset of my RA was so sudden, i went from having a grating twinge in my left knee on rising from a chair to getting home one night unable to get out of my car! I rang my partner to help me & it took about 15mins to get from the kerb to the house door. The next day the GP came and threw his hands up in the air at the level of distress and pain he witnessed. I have been, what i call ‘trialing’ drugs for 8 very long years, with only transitional benefits. I have been on toxcilizumab now for 13 months & i would finally say its controlling major flares, & the most intense pain, it does not relieve the chronic fatigue,all of the fevers, doesn’t seem to touch the secondary symptoms like sjjorns pain or extreme mouth dryness. Having both knees replaced about 18 months ago helped me, stunningly helped, i was in a wheelchair at times esp in summer which intensifies pain & swelling for me. I am very interested in the familiar references in your blog to The Professionals notions of RA symptoms & the actual symptoms of the RA Warriors; it resonates with my experience whole heartily. I have often felt disbelieved in fact, in spite of having no track record of previous regular appearances at the GP surgeries or hospital records. I have felt that the focus has been on ‘them’ being happy with the treatments efficacy & my well being rather than my ‘actual’ experience of MY RA. Its bewildering to be told you have aggressive galloping resistant RA alongside a sense of not being taken seriously….. On my last hospital visit, the pain clinic team were invited in (once again) they asked if i was depressed, i could hardly stifle the laughter as i said ‘of course i am depressed who in their right mind wouldn’t be!! I have had whole or most areas of my life decimated, i sleep whole weekends away, i live in pain & i have an incurable condition, would you be depressed?’ LOL or ROFLOL even ha ha. This is my first post, your blog has been a great source of comfort to me & I thank for that as i don’t find much comfort elsewhere, I have told my RA team about your site but don’t think they have visited as it would surely emerge in a change in attitude. I have enjoyed my rant very much Thank You. Soldier on Soldiers! or perhaps i should say Soldier on Warriors!
Nice to meet you Tess. Thank you for posting. I enjoyed your “rant” as well. Funny how some things can be the same though we are so far apart.
Hi Kelly, Yes, i should have referenced that i am in the UK
Tess
oh don’t worry I figured that out from a few clues.
My first symptom was pain in my wrists. Just a naggy little pain, which felt completely different from the osteoarthritis I’ve had in my index fingers and little fingers for several years (altho a light bulb just went on for me — it was symmetrical. RA?) — this wrist pain was stiff, and felt like there was something big and semisolid in between the bones of my wrist and my arm bones, keeping me from flexing my wrists like I should be able to.
I ignored it for several weeks, then mentioned it to my doctor. I had noticed my ankles were stiff and sore in the mornings, sometimes, but I’ve had surgery on one and sprained the other umpteen times, so I didn’t think much of it.
Well, blood tests and finally the anti-CCP test showed I have seronegative RA. I’ve had a few flares, which are NOT fun. I’m on 10 mg prednisone daily, Tramadol, 7.5/650 Lorcet Plus and 30 mg Restoril so that I can sleep.
I see the rheumatologist for the first time on May 2 — there aren’t many of them in my part of Georgia.
I did a long prednisone taper about a month ago, and that made the pain in my elbows go away, but it’s beginning to creep back. The wrist and ankle pain came back within a couple of days.
I’m ready for something to stop this constant naggy pain. The Tramadol keeps it damped down (mostly), but I always know it’s there. I’m only 56 and had led a pretty active life — I’m fretting now because it’s time to plant my garden and I don’t know if I’m going to be able to do it.
I guess what bothers me most is the fatigue — I take 4 to 5 hour naps every day, and I’m still worn out at bedtime.
Tell me it gets at least bearable? Please?
Wanted to add, after skimming through the previous posts, that I think I may have had JRA. I’ve always had “weak ankles”, they’ll flip over and put me on the ground with no provocation. I actually damaged the right one so badly that the ligaments finally tore and I had to have surgery on it in 1986.
I can remember having “growing pains”, sore ankles, and a stiff neck every now and then as a child. When I was about 15 I spent almost an entire year being completely worn out — I had absolutely no energy to do anything except go to school, come home, take a nap until my mother got home, go feed the horses, eat supper, and then go back to bed. I’d spend as much of the weekend as I could in bed. This went on for a year, with no doctor intervention — my mother had a doctor phobia and would rarely take me to one unless I had a fever or something was obviously wrong.
When I was walking for exercise in the 90’s, I’d have to wrap my left knee because it would swell and hurt so bad I could barely move it. I’ve tried the Couch to 5K training system (you slowly work up from walking for 20 min to running for 40 min) and can never get past the point where you jog for 3 min and walk for 3 min — my knees hurt too much. I even have knee braces for when I get to that point.
Right now I’m having a flare in my left knee, which hasn’t bothered me recently. If I get one in my right knee, I don’t know what I’ll do.
I remember that, in my late teens, my jaw began giving me trouble — it would feel like it was popping out of joint. The dentist said it was my wisdom teeth and he pulled them. I still have that happen, just not quite as frequently.
As for Flintstone feet, I’ve had those all my life. Recently I’ve noticed that my left foot has swollen a bit more, and I’ve had to loosen the laces on my shoe because it was too tight.
I have to use a jar opener to open even bottles of Coke. Unopened bottles and jars I have to get my husband or son to open. Even jars of vegetables I canned myself I can’t open anymore. I have snap caps on all my prescription bottles — I can’t press down and turn the child-proof caps anymore.
I wonder how many youngsters are suffering in silence with “growing pains”, being “clumsy” because they have “weak ankles” or drop things because they can’t grasp strongly? How many would be hit less viciously later in life it they got treatment when they first started showing signs?
Hi I’ve been suffering now for about a year n a half with all joint pains mire severe to the wrists hips ankles n fingers. But wen I went to the doctor they still tell me its not rhematoid. They did the RF test n it was positive n now they doing the ccp test. I’m on treatment for rhematoid n that’s y I think the ccp test is coming out negative. Wat do u advise me to do next as I do not wanna become cripple. Its early stages but I know it definitely is rhematoid coz my mum also had it.
Plz email me with yr opinion
Tnx
My eyes were my first symptom, followed by my feet,spine then ankles..my gp continually said no not ra that affects the hands first
My first symptoms were bilateral swelling of my ankle joints which was diagnosed as a post-viral arthritis. I ate aspirin until my eaters rang and then it went away. The next thing that happened was that about two months later I found that I could walk only very slowly and I was incredibly tired all the time. I then began to have joint pains and the cartilage in one of my ears grew knobs on it! At one point when I told the Rheumatologist that my muscles all ached she said “Oh that’s not RA and would not talk about it.. Since then I have been on mNy treatments that I have “failed” . When people ask me what is wrong and I say Imhave RA their response is often “Oh I have arthritis too and I cured it with (blah blah blah). You know what that means I am noe on Methotrexate and one of the biological DMARDs Tocilizumab. I had to go of treatment while I had surgery and am now waiting for the infusion to take effect. My ankles are merely always swollen and painful and the rest of my lower leg and feet swell too. I have three different size shoes and two pairs of open sandals so that I have something to put on my feet!
I just was told I have RA.. Three years ago I had uveitis alot of blood work was done all neg. I went to my family dr was tired all the time and I thought I sleeped on my shoulder wrong had a hard time moving it, she ordered blood work the next day the nurse called and informed me I had RA. Wow Im scared my first app. with a rheumatologist is in three weeks.
Hi Mimi. What do you think you’re most scared of?
I just began teaching preschoolers when I got pneumonia. My feet started hurting and I asked other teachers if their feet hurt. They said yes and recommended different type of shoes for me to wear. I ended up wearing over sized Crocs due to the swelling. Just as school was ending I couldn’t lift my arms and I hurt everywhere. I did not respond to prednisone and so they sent me to a Rheumatologist. He put me in a study and I was on Methotrexate and Humira shots. Now I’m on Methotrexate. The combination put me in remission for awhile. I was able to teach 2 more years and then I needed to retire due to fatigue and small flares. My blood work has been normal ever since. Thanks for all you do!
Carol from NH
Hi Kelly,
I think what Iam most scared of is the unknown,how much pain am I going to have to live with. I also wonder how long I had it, I wake up with a bad back ache
,swollen feet after standing in heels for a short time. When I was 16 my mom took me to the doc. for pain in my legs I was told to take a zinc supplement. I am just so unsure, almost in a state of disbelief…
Just take one day at a time Mimi. I can’t say that enough. Don’t assume the worst. It does need to be taken seriously, but you don’t have to face the rest of your life all in one morning.
Hi Kelly,
I realised you had figured (:)it out, thought it might encourage other RA warriors in the uk. I tell lots of people about your site & most don’t visit…..exasperation, I pretty sure after 8 long years my family, friends & partner, are still in denial, which i find willful & insensitive. Perhaps you can tell i am having a bad day…i often visit your site when i feel like this, & today it brought me to tears, i feel very isolated, i don’t feel i have anyone i can speak with…i basically feel i want to ‘talk’ out the dreadfulness, the relentless…..days of nothing much except restless pain & fatigue, a fatigue that sleep never abates. I read some of the article from the link to Dr Hassets article, & the general tone itself is depressing! I stopped reading it, thinking…you dont have a clue! I was unable to have my Toxcilizumab infusion this month or weekly metoject as i have a cold, the first i have had in fact since this began, which is a bit remarkable, perhaps its due to my stopping all the predisolone. Since i was first put on the ‘big guns’ treatments this has been one of my greatest fears, the other is falling. I had a skin infection after my second knee replacement & was hospitalised for 6 days on IV anti biotics; i guess it ‘should be’ reassuring that they have big gun anti biotics however, its confusing…on one hand saying stay away from infections, avoid etc etc and on the other hand reassuring me that they can treat me; if they can treat me then why should i have carried this fear. The work you put into this blog is simply amaZing, truly wonderful, the word ‘forum’ really ‘voice’ where else can our individual voices be spoken let alone heard. I wonder if you also figured out my profession, i am a therapist & having this disease has deepened my empathy to many of life’s struggles, sadly though i am unable to see as many clients, how is that ‘right’ it feels so ‘wrong’ that i am vocationally committed but can not work with as many people, each year i am finding it more draining. I read on your blog, that you have had your site going for less than 10years, you must be amaZed at how successful you are & may i say gifted in how you reach out. I don’t know if there was a more appropriate spot to comment…you site has so many avenues…..i get lost for hours well one or two. Tessx
I was diagnosed with plantar fasciatis and tarsal tunnel syndrome in my feet.After 18 months and 6 different docs, one great orthopedic foot doc (at Rush in Chicago) took only 5 minutes to say it was not orthopedic but rheumatic. Shock! During the month wait to get in see Rheumy my darn ol hands started to hurt again. My hands and elbows had been hurting on and off for about 6 plus years. Never put the two together. When the doc told me that was the start of this i
I was shocked again.So yes I am the typical hands first RA person. Female. Diag. 2010. Age at diag. 53.
How I live: TOTALLY FRUSTRATED!!