What Does Rheumatoid Arthritis (RA) Look Like?
Common myths about RA linger in college classes
In an immunology teaching lab class this semester, my daughter Katie Beth (KB) learned how to perform a rheumatoid factor test (latex agglutination). Prior to that lecture, KB read through the professor’s slides in the syllabus. She noticed the material included several common errors about Rheumatoid Disease (RD). I was so proud to read the email she sent to her teachers in an effort to correct the misconceptions (such as age and pattern of onset).
Way to go, KB!
While not perfect, the presentation about the rheumatoid factor test and RD itself was improved. KB pointed out that hundreds of students in different lab sections heard a more accurate explanation of RD. I was so proud of her. Still, the speaker included a few “RA facts” he’d found from sources that many consider trustworthy. But they aren’t necessarily all accurate.
“That’s not what RA looks like,” she said…
Furthermore, the images on the slides (see right) were only of the most extreme rheumatoid deformity. As fate would have it, that error didn’t go undetected either. Another girl in KB’s class exclaimed, “That’s not what Rheumatoid Arthritis looks like. My mom has RA.” A surprised KB had someone to compare notes with. I wonder whether the professor recognized that with a disease as common as RD, there’s bound to be people affected by it sitting in his lecture hall.
What’s a good picture of rheumatoid arthritis / rheumatoid disease?
Rheumatoid disease is pretty complicated to be demonstrated by a photograph. Severe deformities do occur, although many believe they are less common now, for debatable reasons. What’s a good picture? Is it possible for a photograph to show the pain, functional loss, or health impact of RD?
What do you think? Can a picture accurately represent RD? Is severe deformity the best way to teach about RD? What do you think will correct the common misconceptions about RD?
Have you DISCONTINUED Cimzia in the past year? Click here to read about how to help other patients with a short interview.
Related stories
Is there such a thing as “seronegative RA”? What is or is not meaningful using rheumatoid factor as a label? It’s confusing, but we should remember that tests are tools to help people, so they should never be used as weapons. Continue reading… Seronegative Rheumatoid Arthritis
Telling the truth about what’s a “complication” and what’s just the disease. It’s not that complicated to grasp: these are secondary Rheumatoid Arthritis symptoms… If I’m driving to Wal-Mart, and I get a flat tire, that is something that “complicates” my trip… Click to continue reading… 3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis”
Recommended reading
- Rheumatoid Factor Test: Should We Rely on Rheumatoid Factor Levels?
- Rheumatoid Arthritis Test: Some Funny Factors
- Blood Tests for Rheumatoid Arthritis: What Is Their Role?
I don’t think there is a way to accurately portray RD in picture format. It’s like saying what does a murderer look like? RD can affect anyone, at any age, and has many different physical manifestations. And, that doesn’t even start to talk about the pain, emotional, mental, fatigue, etc. Issues that go along for the ride. It is a difficult disease to describe, and it’s not just granny’s disfigured hands anymore.
I have no visible signs/deformities of this disease. My picture would be one that shows me lying or leaning on the couch with obvious signs of pain on my face and extreme lethargy.
Me, too. And then there was my Momma, who had every deformity and associated conditions of RD known or described. Sometimes I feel like – I don’t know – like guilty that I don’t have many of the outward signs.
I feel the same way after 26yrs with RA. I got treatment after 3-4months of tests to find out what was going on at age 28. To this day my family doesn’t understand or want to. They expect deformities like my aunt had, who had the disease from the 1970s with little treatment available as there is today. My hands have no signs of RA except a curving of one finger. I felt like a fraud sometimes cuz it wasn’t visible. Do not ever allow yourself to feel that way. It’s others loss if they judge rather than support or even believe you. I like who lve become after many yrs of pain. I’ve learned to be content with less and lve gotten more than l ever imagined at 54.
my knees hurt but not all the time. my fingers get stiff and hurt when I make a fist. my back hurts to at various times of the day.
Is this arthritis or RA?
Hi, I’m new to this site and not sure I’m asking in the right place or if I do get any answers how I’ll know where to find them, but here goes:
I’m 58 and woke up one morning with 10 stiff fingers Dec. 2012 and every morning since. April 2013 I went on Plaquenil for a year and it helped reduce swelling for awhile but then stopped helping. July 2014 stopped Plaquenil and started 10 mg. weekly of oral Methotrexate. Didn’t see much improvement so increased to 15 mg. and when I didn’t notice a difference I increased to 20 mg (as RA Dr. suggested). Today will be my 4th time to take 20 mg. but I still have very swollen fingers during the night and early morning. So far I only notice the RA in my fingers and would not say its’ painful, just that the swelling is annoying. My fingers feel pretty good during the day and I can do my work as a sign language interpreter fine if I don’t overdo. Here is my burning question: IS IT UNREALISTIC TO EXPECT MY FINGERS TO FEEL NORMAL ON METHO AND NOT BE SWOLLEN AT NIGHT OR CAN I NOW ASSUME MAYBE METHO ISN’T WORKING FOR ME? OR DO I NEED TO GIVE IT EVEN LONGER THAN 4 WKS AT 20 MG TO WORK (EVEN THO I STARTED AT 10 MG 3 MOS AGO AND WENT TO 15 MG 2 MO AGO). IS THIS RX WORKING IN THAT I DON’T HAVE PAIN OR OTHER JOINTS AFFECTED OR SHOULD THE PM SWELLING BE GONE BY NOW, OR WON’T IT EVER BE? Thanks so very much for any help in trying to figure this out! Linda
Linda, I too had the swelling issues, but I also had almost crippling pain at times. My RA doc has me taking an Aleve in the morning and one in the evening. It has taken most (if not all) of the swelling away and I can now wear rings I hadn’t been able to wear for years. I am also taking Methotrexate weekly and an Enbrel injection weekly. I ride a motorcycle, so being getting rid of the swelling was a major priority for me. Talk to your RA doc and see if he will okay this for you. It has helped several people I know.
Thank you Debbie! This is yet another thing I am confused about: The warnings for methotrexate say not to take NSIDS (alleve, advil). But I’m thinking this constant swelling since July is going to cause joint damage. I don’t know how long to give the metho before determining it just isn’t going to help me at all….
And although no pain I couldn’t get a ring off in the morning if you offered me a million dollars! A couple hours after waking up, yes.
For me, the picture of rheumatoid is frustration. Although everything looks ‘normal’ from the outside, we struggle to be understood by those around us, even those treating us. We are average, “normal” looking, with no or few external hints of a debilitating, painful disease which steals the quality of life we long for. Which takes us back to the whole issue with education – both for those in medicine and the general public. Until those in medicine update the teachings, patients will continue to struggle to be understood and treated appropriately. My rheum treats the HAQ first and continues to tell me unless I have all four symptoms present (pain, swelling, redness, heat), it’s not RA. And, with the public, we’ll never get the funds needed for research and patient education unless the public understands what this disease is and how it impacts a patient (it’s not just joints). My recent issue is with local hospitals – they have programs for cancer, heart, diabetes, stroke, but NOTHING for the many forms of arthritis or rheumatoid, etc.
And, way to go, KB! Very impressive.
I’ve seen both as growing up (and before I was diagnosed). A friend’s mom was severly deformed, since she could not afford adequate medical care, while my own mom to this day has limited deformities. The disease should not be dictated by what a picture looks like. You don’t have to see what heart disease or lung disease looks like. Why can’t words be enough to explain what we go through on a daily basis.
I do have severely deformed hands, a hip replacement, both knee joint replaced and all 10 toes fused. With each surgery my family and friends have said, ” the problem is ‘fixed’ now”. That could not be farther from the truth. The PAIN, zero energy and depression are not visible but ever so debilitating as the the outward effects of RD. It’s been a 21 year journey for me, each year it more difficult. I pray for other RA Warriors. The new treatments have helped many, they are far from prefect but making progress. Thank You, Kelly and KB, I appreciate you so much.
Hi Peggy I have had RA for 39 years. 2 hip And 2 knee replacements Toes are fused. My fingers are bad but I try a lot of things. It may sound weird but try soaking golden raisins in gin. Recipe 1 ounce of raisins to 1 ounce of gin soaking in a bowl for 16 days. Leave the container open so the gin can evaporate and stir every so often. Leave covered after 16 days. After 16 days start eating a spoonful every day. It may seem weird but it works for me as far as pain and bumps on my fingers. I am here if you need to chat with someone. Be positive there are more people out there like us I am finding out. A friend
“My rheum treats the HAQ first and continues to tell me unless I have all four symptoms present (pain, swelling, redness, heat), it’s not RA.” If I were you, I’d be finding a different doctor. That statement is absolutely crazy! I don’t have the redness or heat but I sure do have RA. Not everybody gets the redness or heat; some people don’t even get the swelling.
This comment was directed to Donna…..
Thanks, Debbie. A change is in process. What’s interesting is he continues to tell me this after Vectra test showed high disease activity. He can’t/doesn’t answer that one either.
@ Donna,
I’m with Debbie, Find a different Doc!!
my RA does look like that, like the picture of the horribly deformed hands in the upper right corner of the picture. I am almost 60, was diagnosed at 32, and I have been very medication resistant. The disease has slowed some recently, but the fatigue is horrible and the pain from the damage already done is nonstop …. Not a matter of if but of how much. I see people in TV ads who are representing the disease to sell medicines and they have no outward signs of the disease and I get very resentful that people like me are not shown. Let’s show how it can look for many of us.
Deborah, You and I are very similar in our RA journey. My best to you !
well here is a question? what does diabetes look like. oh i know what does krone’s look like? oh, oh!! what does a seemingly healthy woman who must sit down on the el or else faint look like?
she looks like a selfserving rude person.
my feet ‘look’ fine. my shapely ankles and knees “look” terrific. my fat four chinned neck still looks the same. my left wrist doesn’t look bad most days. you can’t see my vfevers, or fight against crushing fatigue. you can’t see me easing myself to the potty when my feet decide to announce they exist.
What the public does sees: a fat broad leaning against a wall, counter or something because you insist on talking to her while standing even when she asks please there are some chairs over there. you see a woman carries everything on thick straps on her shoulder because her hands can’t do it. you see a woman withdraws or looks angry because pain is sneaking back, or burning fire or dizziness. you see a rude lady because she says no when asked to carry a heavy platter laden with food to serve at a women’s coffee. you see a woman pulling forward in a tandem parking stall away from the crowds because her hands don’t always want to deal with tight parkkingspaces and backing out. finally you see a woman with ace wraps and ice packs stuck in socks wrapping her wrists or twisting the ice from top of hand to weist so she can function latter and to slow down the deforming of her hands, knee, neck—–.
good for your daughter and the other young lady for challenging their poorly educated instructor.
I’m still new to this site and newly diagnosed. I fought for over a year to get a diagnosis although I’ve suspected for about 3 years. I feel lucky that after only my second Rheumy that I got diagnosed and treatment started. It’s unfortunate that even in the medical community that if you don’t exhibit what’s considered classic signs of RA, you can have difficulty getting a correct diagnosis. It’s the medical community that’s stresses the importance of early diagnosis for the best outcome for preventing joint disfigurement yet when a patient complains of symptoms but does not exhibit the “classic” signs we are often not believed particularly if you also have negative blood work. So, no I don’t think you can accurately depict with one picture the many faces of RD. There definitely needs to be more education and increased public awareness to change the misconceptions of this disease. There I said it, disease. it not “just arthritis” as you frequently hear.
My next battle is monitoring effectiveness of treatment. Since so many Rheums monitor by blood work, does anyone know how they moniter effectiveness of treatment if you are seronegative?
I have had RA for 30 years but have no outward visible signs of the disease (except for scarring from foot surgeries). I’ve been very responsive to Enbrel, which I’ve been on since it was first released. Many days my RA results in overall achy muscles, sore throat, shooting pains, and a general feeling of feeling ill as if I’m coming down with the flu.
I actually had a Dr at the Cleveland Clinic tell me I couldn’t have RA because my hands looked ok! And he told me my neck and back pain couldn’t be RA because RA doesn’t affect the spine?! So if that’s what we get from rheumatologists at a world-renowned medical center, what can we expect from the general public (or apparently universities???) So frustrating
They really shouldn’t try to paint a picture of what the RD looks like on everyone because it’s so different. I fall right into so called seronegative. I had 4 different Rheumatologists tell me I did not have the disease before I was finally diagnosed 5 years later. By that time I was considered severe in my illness and could barely walk.
From the first appointment I was pointing out to the doctors the deformity in my hand Jacouds Arthropothy which indicates I may have had this since I was a child. My disease presented most severely with vascular issues affecting my digestive tract about 8 years ago now. Doctors at the treating hospital were dumbfounded they couldn’t understand why someone so young was being affected by a vascular disease that normally affects only older seniors. I almost died. It has also affected my spine requiring surgery. All this before I was ever diagnosed and started treatment. So for me the damage was already happening. It’s just that most of it was going on inside where you couldn’t see it.
I’ve not even reached 50 yet and my Rheum is telling me I need to file for SSDI. I’ve been putting it off for almost 2 years now partly because it’s a bitter pill to swallow.
The photos they are using are completely deceptive. Even when I brought photos and videos of what was happening to me 4 doctors disregarded what I was saying and showing them. Some doctors didn’t listen, a couple I think were afraid to diagnose me because my case was “different” from what they expected. All the while my gp kept saying that he felt I had RD and that he couldn’t understand why these doctors weren’t diagnosing me. My gp went so far as to call on of the Rheums and question him as to why but he got nowhere either. Ultimately my gp stopped referring patients to him.
Way to go KB! My kids are now teens, and have been able to correct misinformation they hear about autoimmune arthritis.
BTW, I wanted to thank you Kelly. I’ve been hoarse all week, without any cold symptoms, coinciding with a flare. Thanks to your article on RD and voice, I new what was happening with this new symptom instead of freaking out! 🙂
Hi, Kelly. My rheumatologist’s office gave me a heads up early this week about a change to Medicare as of January 1, 2015, regarding Remicade. I had been paying $15 per infusion, but under the change I will have to pay close to $900 for each infusion which I cannot afford to do. Because this is a change to Medicare, I assume there are many others who will run into this. If you haven’t already, can you give your readers a heads up? I know I need time to think this through and others may need time to determine if they, too, will be facing such an increase and how they will deal with it. Personally, I am considering trying methotrexate again–my hair fell out the first time I was on it so I went off–or Xeljanz if I can qualify for assistance which I failed to do with Humera. As near as I can determine, I think methotrexate and Xeljanz are the only choices I will have.
I wish you rest and comfort, and I thank you for all you do for me and so many others!
Jeanne
I am soon to be 60 and diagnosed 10 months ago. My onset was nearly a year prior but I did not have insurance so was unable to seek care. I have had a couple of nodules on joints in my hand which have gone way down. Initial treatment was methotrexate and NSAIDS. I started Enbrel in June in addition to the methotrexate but it has been deemed a primary failure. I was feeling better for awhile but had a flare like no other start about 2 weeks ago. It hit my feet, ankles, hips, knees, elbows, wrists, hands and shoulders. I’d never had it hit me like that before. I’d had pain in my feet and hands but nowhere else. I work in an internal medicine clinic as a medical assistant and have not missed a day of work due to RA. Had a meltdown 10 days ago with all the pain and fatigue and have not gone back to work yet. My rheumatologist has prescribed Orencia, telling me that TNF’s are off the table now. I have yet to get the medication due to my pharmacy having prior authorization problems. My doctors office got the prior auth but the pharmacy can’t get it together. I don’t look sick. I look absolutely normal. I am not twisted anywhere though I have seen patients with this manifestation. I do not feel normal, not at all. I want my life back. I’m pretty pissed off that RA had the nerve to tap me on the shoulder. I have been active and healthy all my life. RA is an assh*le!
I was diagnosed with RA a year and three months ago but have had it for decades with increasing severity. I am 48. Xrays show erosions in my feet, which is where it all began.
My feet have changed – callous on the ball of right foot and one beginning on the left. Developing hammer toes with definity daylight sign on both feet. They look somewhat deformed, but not horribly so.
My fingers are swollen and have started to look a little deformed. Distal joints on two fingers have nodules. So much.for the distal joint theory…
I have not had any surgery but was recommended for fusion surgery in the neck c5, c6, and c7. My rheumatologist says RA generally affects the upper cervical spine. Maybe so – usually…
She is a rheumatology professor at our state univerity medical school and tends to go by the book. However, she also works for the attached research center.
Lots of confusion out there.
Hello I’m new to here and I would like to start out telling a little bit about myself. First off my name is Bobbie I’m 30 years old and I have osteoporosis & RA the doctors are not sure how long I’ve had it cause It took them 3 years to diagnose me. My fingers are already turning towards each other my rheumatologist even told me the pretty names for it “Swans Neck” but me myself I don’t see any beauty in it! 🙁 all I want to do is sleep, I know that it’s only going to make me feel stiff when I get up but it helps me not to focus on the pain! My hands feel like I’m wearing gloves that are 3x too small there hot and red! My doctors have put me on prednisone for my inflammation. It help but doesn’t stop the constant pain and stiffness I feel daily! My hips hurt when I lay down and sometimes when the weather is bad it hurts to walk and sit! My doctors have told me that my RA level is very high and it’s very active! I’m about to start humara and I’m wondering if anyone has personally used it and if it helps? Is there anything I can do to help my fingers stop turning I can’t afford the expensive braces my rheumatologist prescribed and my insurance won’t buy them so I’m asking if there is maybe a home remedy for this? Sorry for the long message I’ve just been looking for a site support group to talk to for a while so I’ve just been waiting for people I can talk to that understand from there own experience what I’m going through cause I don’t think people who don’t have this type of disease don’t fully understand.
What does RA look like? Pick someone, anyone! you won’t know until you ask them about the unbearable fatigue, the pain, the flares and the battles with the Drs to find out why! My first serious flare occured while my wife and I were on our 30th anniversary cruise (lovely, NOT). Couldn’t figure out why at the end of the day I could barely walk and EVERYTHING hurt. Spent a lot of the cruise self medicating to relieve the pain 🙁 Took about a year and a sharp young Primary Care Dr to finally order up the RA tests and get me a referral to a Rheumatologist. I’ve gone from being the Energizer Bunny to only being able to accomplish 1 modeate task a day (if I’m lucky). Maybe if we LOOKED sick we’d get more attention, hard to explain to folks why you have to lay/sit down a lot of the time because you just don’t have the energy…….
Hi everyone. I apologize ahead of time for posting this in the wrong place. I am so upset with my rheumy right now that I can’t even think straight. Basically I need to vent a little and also hopefully share some valuable advice that can be passed on to the newly diagnosed.
I am a 49 year old female and was diagnosed 20 years ago with RA. Took 5 years before I had a positive rheumatoid factor from the onset of symptoms and by the time I finally had the diagnosis there was already significant damage in my hands and wrist and feet due to the delay of aggressive and appropriate treatment being started. I would like to share my onset story in the appropriate place so I am just going to focus on why I am making this post for now.
I have been seeing the only rheumy that we have in our city for the past 8 years and then prior to that I saw him off and on for about another 6 years. Prior to ever having symptoms of RA I was the office nurse for him for several years before having to move away. When I worked for this man I knew that patients frequently complained of him not being aggressive with their treatment or even delaying treatment. He is also known amongst other doctors as being rude at times with his patients. But I thought things would be different with me since we had known each other for so long and I knew, or thought I knew, that he would do his best to give me the best level of care possible.
I was wrong and sadly my stubbornness in staying with him for so many years has cost me one wrist replacement and the other wrist scheduled for next month. I can also add to that list one thumb fusion with the second scheduled along with the wrist replacement. I have had 4 surgeries total on my right wrist and thumb also including two nerve repairs. And I have two more surgeries to look forward to after I recuperate from the left wrist and thumb. I know this may sound rather extreme to blame all of this on one doctor but sadly it is true.
Six years ago I started complaining to Dr. “This remains to be seen” (that is what he says EVERYTIME HE DOESN’T KNOW WHAT IS GOING ON). I will just call him Dr. T for now. My dang fingers hurt too much to type all that crap out again. So, for two years I was ignored when I told him every office visit that I did not think my meds were working. Frequently told him that my right wrist was very painful to move it and that it throbbed at night and was keeping me awake. Finally I put my RN foot down and asked to be referred to a hand specialist. This is the one and only time that Dr. T actually did something thoughtful and productive and the next month I had my first consult with the top hand surgeon in our state. It only took this surgeon about two minutes, if even that, after looking at my hand and wrist x-rays and he then told me my right wrist was total crap. I had bones that were completely disintegrated and we’re missing completely and the rest of the wrist bones were collapsed forward. He told me no wonder I was in so much pain and that the only thing he could do was either a fusion or wrist replacement which is what we opted to do. Sadly he said had I come to him even a year earlier that he might have been able to go in and clean the wrist out and also try injections. But it was too late for that. I had to admit to him that there were no previous x-rays for him to compare with because Dr. T had never, ever xrayed any of my joints. EVER!!
So here I am again, same situation. Saw the same hand surgeon two days ago because of severe pain and loss of movement in my left wrist. He immediately noted that there was swelling in the wrist and xrays were not good. Scheduled surgery for mid October for total left wrist replacement and also fusion of my right thumb. I left his office and cried the three hour trip home. I told my husband thst I was so angry with my stupid stubborn rheumy. I had just seen him Monday of this week and he stated to me ONCE AGAIN that he saw no signs that my RA is currently active and refused my request to stop the Actemra and put me back n Orencia. I have been begging him for almost two years to switch me back because I knew it wasn’t working. His conclusion from this visit was that I was having problems with “pain control” and maybe I needed additional meds for my depression!!!
How is this possible that a specialist in this area can be so ignorant and to not trust his patients when they tell him they are hurting. And that the pain is different. I’m sorry guys, I am still so upset about this and it drives me crazy that he wouldn’t listen to me, when I know better than any doctor when it comes to my body. It also find it so disturbing that there are many more RA’ers just like me that have to live in agony and their joints are being destroyed because their refuse to listen.
Finally after all these years of dealing with this ahole, I am seeing a new rheumy in another state. Just sucks that I have to drive two hours away to receive better healthcare.
On a lighter note, after I told the hand surgeon what my rheumy said about not seeing any signs of inflammation, he chuckled. But what really made his day was that Dr T. asked that he “shoot him a letter” on what he thought was going on with him. I think that is one letter that the surgeon will truly enjoy sending.
Thanks so much for listening to my rambling. I believe this is my first post here but have been lingering for quite awhile. Prayers to everyone!
I didn’t see anything to click on to edit my post. I am horrible at typing and texting and hopefully you all can make sense of my post, minus the typos. 🙂
Re new test for RA. For all patients with seronegative, there is a new protein test which is far more accurate diagnostic measure of RA. It is 14.3.3eta. Developed in BC and Alberta. A company called Augurex. The new test is called Jointstat. Check it out. Revolutionary approach to both testing and treatment of RA
Thanks for info Lise on jointstat