Patients & Doctors Differ on Assessing Rheumatoid Arthritis Disease Severity | Rheumatoid Arthritis Warrior

Patients & Doctors Differ on Assessing Rheumatoid Arthritis Disease Severity

Problems assessing Rheumatoid Arthritis disease severity?

Ever feel like the doctor doesn’t see Rheumatoid Arthritis the way you do? If you have RA, you’re in good company. One new study found over a “third of Rheumatoid Arthritis (RA) patients differed from their physicians in assessment of their disease severity.” I know about this “differing” because of my daily contact with patients and I know it’s true because I am a Rheumatoid Arthritis patient. I’m glad to see the discussion of it after the June issue of Arthritis Care & Research reported “clinically meaningful differences between patient and physician assessments of RA disease severity in 36% of cases.”

You probably won’t be surprised if I tell you that the physicians scored the disease severity lower than the patients did. But you might be surprised at one suggested reason for the (discordance) difference. It was suggested that patient language or mood may be associated with the discordance because they “pose barriers to communication.”

Don’t let the fancy language distract you. The researchers are not blaming the doctors for how well they listen. They are claiming that, for whatever reason, the patients do not communicate adequately.

At least patients can agree with the fact that accurate disease assessment for Rheumatoid Arthritis is important. The study’s Dr. Barton concluded, “Reducing patient-doctor discordance is an important goal that can improve patient outcomes.”

A clue to the problem with assessing Rheumatoid Arthritis disease severity

The times I’ve disagreed with a doc about the assessment of my RA severity, it has been because the doc is confused about Rheumatoid Arthritis as a disease, what test results mean, or what RA “looks like.” Every time, it has resulted from the doc’s expectations about Rheumatoid Arthritis swelling. One of the most popular posts ever on the blog is the “swelling post” which is really the “not swelling post.” There are 115 (edit 8/2/11) 242 (edit 1/17/13) 319 (edit 5/6/18) 372 comments, mostly describing a lack of visible swelling that bewilders doctors.

Can you guess what the study showed as an indicator of lower discordance (more agreement) between doctors and patients on assessing Rheumatoid Arthritis disease severity? Swelling. “Researchers noted a lower level of patient-doctor discordance in those patients who had a higher swollen joint count.” If the patients had more swelling, then the doctors tended to agree with them about their RA disease severity. Perhaps that ought to be the headline.

Next time: Guess again! How many RA patients said they regularly discuss ongoing pain with their docs?

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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42 thoughts on “Patients & Doctors Differ on Assessing Rheumatoid Arthritis Disease Severity

  • June 24, 2010 at 7:18 am
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    Patients & doctors differ generally on assessing rheumatic diseases. I´ve been attending the EULAR congress in Rome laste week. One session has been on creating the ASDAS (anlykosing spondylitis disease activity score). Parameter and the ASDAS correlated with patient´s global but not with physician´s global.
    That´s the reason, why I have every patient giving an estimation of actual activity on a 0-10 scale, and use tools like DAS28, HAQ-DI, RADAI, BASDAI, BASFI, BASMI etc. to come to a better estimation of disease severity, activity, and impact on daily life.
    I hope to convince my colleagues to listen more to their patients as well as to use available tools.
    Lothar M. Kirsch, MD
    @Rheumatologe on Twitter

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    • June 24, 2010 at 8:36 am
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      You are one of the good guys, Dr. Kirsch. It’s encouraging to hear what is happening at EULAR 2010. Thank you!

      Reply
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  • June 24, 2010 at 8:40 am
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    I wonder how much of this comes down to personal attitude having an effect on how ‘severe’ drs view our RA to be. I’m one of those people who always tries to have a smile for others no matter how awful I’m feeling & I guess I tend to ‘gloss’ over how badly I’m doing at times, including (probably wrongly), at apts. “Yea I’m not doing too badly thanks, hips are still a bitch” etc. Don’t get me wrong if something is really bothering me or I feel a change in meds is needed, I’m there and asking but I guess I tend to ‘cope well’ on the surface. I wonder if this is maybe a trait in people with chronic diesease as we try and battle through each day. I know many of the RA’ers I know have a sunny, happy go lucky disposition. That’s not to say of course that we’re not stood there in agony as we smile and chat about the weather, we just get good at covering it up. Now I’m off to read the swelling post, as I’m one of those that doesn’t have much visible swelling.
    Gilly

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    • June 24, 2010 at 9:43 am
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      I think I do the same thing Gilly. That is such a great point! I know I try to be cheerful & polite & I do have a good attitude. But even I’m not suicidal over it or I have a really high pain tolerance, I still want the doctor to believe me & take note when I get to the part where I say: “I can’t function from this RA. I can’t do anything. Every single joint is screaming in pain if it is touched or used…” you get the idea. 😉

      Reply
      • June 24, 2010 at 10:01 am
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        Hi Kelly, oh yea I’m with you for sure. In fact one such rheumy did say to me at one apt, ‘I can tell this is really getting to you, you don’t normally complain’ that was right before he injected my hips. We desperately need them to understand how bad we’re feeling, even when the labs etc are showing them otherwise. If only they could feel our pain for just one day, it’d help them to understand.
        A good example is today in my case, I’ve done just my basic jobs, folded some laundry, washed a few dishes and hoovered the hall ya know, the rest of my day has been spent doing support group mail & yet I feel as though I’ve been kicked all over.
        Thanks again for this fantastic blog, I’m really enjoying it & I know from group how much effort it takes some days to keep on top of things.

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  • June 24, 2010 at 9:12 am
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    why is swelling or lack there of so misunderstood? Step inside my body and there will be no misunderstanding.

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  • June 24, 2010 at 9:15 am
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    I note the section were it says: “It was suggested that patient language or mood may be associated with the discordance because they “pose barriers to communication.”

    What suggestions do Dr.’s have towards better communication?

    I am always cognizant of the fact that my Dr. has many patients to see & that I need to summarize my RA pain, symptoms & severity in a neat & quick fashion so I can get what I need from my dr. & my dr. visit. Easier said than done. Any suggestions here from Dr.’s or patients?

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    • June 24, 2010 at 9:50 am
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      Good question Suzanne. I like what doc Kirsch says – that he asks them. Probably, he also notes what they say into their chart too.

      Some of the studies I’ve been reading do discuss how to aquire more patient input. Check this post. The answer has to be a combination of better tools and more open lines of communication where the patient is perhaps asked point blank: Tell me how is your functioning? How is your pain? How is your fatigue? And then the answer is taken at face value.

      Reply
  • June 24, 2010 at 9:42 am
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    My rheumatologist says I don’t take it seriously enough, that my ra is severe and I don’t complain/call him until its way out of control…then its even harder to reign in, and causes damage(like the surgery I’m recovering from right now). He says I ‘suffer in silence’….like many of us….Hey, I’m learning! My biggest bone to pick (pardon the pun)is with the other medical staff, ie.(x-ray techs who try to bend me into positions I can’t do, cast techs who man-handle me and crush my knuckles trying to stuff their fat fingers in a cast that is already sqeezing the crap out of them, physical therapist who says, “funny, you don’t LOOK like you have RA”) Who the heck is educating these people and why are they SO insensative?! I mean really! I squirm and say OWWWW, and they say ‘sorry’ and continue with the rough stuff! I try to be nice, figuring they’re just trying to do their job, but I’ve made up my mind to start complaining to their superiors…SOMEONE’S got to speak up, and they don’t listen to ME!!! PS…I go to one of the top hospitals in the country!

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    • June 24, 2010 at 10:00 am
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      Cindy, I loved reading this. Sounds like you have an attentive rheum doc! The others – sigh – this is what I hope will someday change as the public is educated about RA. I’ve suffered at the hands of xray techs and IV nurses or medical assistants who grab & pull & roll their eyes if I’m slow or wince slightly. I have been thru it so many times – I had a had mini blood pressure cuff attached directly on my wrist joint recently. I’d never seen one before. When I squeaked in pain she rolled her eyes. The next week a different tech put the cuff above the joint so it did not hurt when it inflated. You mean it didn’t have to be on the joint????

      Some readers on this site encouraged me to tell about the rough treatment with my IV infusion. Finally, I did speak up & it was corrected. My last IV was quick & painless done by the supervisor. She said she was also handling the situation. All that to say, yes – speak up, Cindy.

      Reply
  • June 24, 2010 at 11:49 am
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    I used to do some teaching and always said that if the student wasn’t getting it, the fault was not with the student, it was with the teacher not finding a way to communicate the material effectively in a way that person could understand.

    The same goes for doctor-patient relationships. It should not be necessary to have to read up on self-advocacy, research your disease and while you’re at it, take a course in communication skills in order to reach your doctor. Yet so many of us have to. Or go from doctor to doctor before they find someone who’ll listen or who knows about the no swelling thing or seronegative and in the process get more damage to their joints. Yet the profession and the literature continue to absolve themselves from responsibility and blame the patient.

    It’s a disgrace.

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    • June 24, 2010 at 12:24 pm
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      Hi Lene, I take it you did not like the suggestion that “patient language or mood” may be the cause of discordance because they pose barriers to communication.

      I’m glad to be reading about studies of patient input. But, we’re a long way from that in practice. We need patients involved at every level with the studies though – perhaps they need a good anyalist, writer , editor… I know a couple of people… 😎
      here’s 2 recent abstracts – I’m hoping to get at the whole study – link & link

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  • June 24, 2010 at 11:53 am
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    I think it helps to be calm and rational when you talk to your doctor. Our points of view are quite different. To us our disease is painful and personal, emotion goes along with that. They are mostly trying to solve a puzzle. That is their job. Your job is to follow their instructions as much as you can. The more you do what they ask, the more likely they are to do what you ask.

    Reply
  • June 24, 2010 at 1:57 pm
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    These comments remind me of a patient I had yesterday. She had lupus but was in for another reason which was also giving her pain. Anyone with an autoimmune disease knows that any pain is amplified when you have an autoimmune disease because of the chronic pain we often suffer with. I had nurses telling me, “she does not look like she is in pain.” They were tempted to label her as a “drug seeker.” I talked with her for a long time, and we discussed her pain. I even referred her to this website as a source of support since it has been such a help for me. She talked about her chronic pain. Even though she looked no differently, you could see it if you took her vital signs – her Blood pressure would go down about 40 points after I administered her medications. I spent a lot of time talking with her about the stigma and how hard it is to get doctors and friends to understand that we feel pain all the time. She felt so much better to not be alone and once again, this disease has given me an opportunity to help another person. I also spent a lot of time discussing chronic pain with the nurse that labelled her as a “drug seeker.” I explained that she has pain all the time so we cannot go off the visual cues that we usually do but I did explain the change in vital signs so there was some clinical proof of her pain. I think I opened another nurse’s eyes to the life of someone with an autoimmune disease. I think a real education of our healthcare workers need to take place. I am not being critical of my profession or field, but I do feel like we are so quick to label those with chronic pain issues.

    Heather (RN)

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    • June 24, 2010 at 3:31 pm
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      God bless you, Heather. And thank you for sharing it with others.

      Reply
  • June 24, 2010 at 2:00 pm
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    I guess I’m in RA bootcamp, rather than an official warrior (undiagnosed). But this post really resonates with me, so I’ll stop lurking for a bit.

    Mom had moderate RA, seronegative, diagnosed long before more sensitive tests emerged. In the past 4 years, I have had 5 months of shoulder bursitis, numerous flu-like episodes when I literally could not get out of bed, one bizarre hospitalization for an undiagnosed “maybe meningitis” episode, and 8 months of unremitting ankle pain & swelling following a slight sprain.

    Most recently my wrists, hands & finger joints swelled to about 1 1/2 times normal size, a nodule popped up in my palm, with fever, fatigue, allover flu-like aches, and complete loss of hand function for about 3 days. I was unable to get to the doctor because my husband was having surgery. When I did, and described the swelling, my doctor said in a disbelieving manner, “Really, that big?” I reminded him of Mom’s RA, requested labs – he did a standard arthritis panel (no Anti-CCP), which came back “normal”, then referred me to a hand surgeon for the nodule.

    I am now diagnosed with a palmar fibroma and Carpal Tunnel Syndrome. When I asked the surgeon about the wrist/joint connection, he never examined my joints, told me it was unrelated, but maybe I should see a rheumatologist if it persisted for 6 weeks (it’s persisted for 7 weeks, which I told him).

    My point: way too many doctors focus entirely on what they can see, rather than LISTENING & CONSIDERING what the patient is saying. THIS IS NOT THE PATIENTS’ FAULT in my opinion. Rather, it’s a function of:

    Docs who can’t know their patients because they have to see too many to maintain a viable practice in the current system. They have to adopt a benchmark for evaluating patient input – the benchmark is skepticism, thanks to the threat of drug abuse, malpractice claims, and being labeled an “overutilizer” of diagnostic tests by insurance companies.

    The phenomenon I call “Alert Patient Syndrome”. If you are alert, attentive, smile, dress nicely, make a joke, make eye contact, do anything other than writhe in pain, you must not be sick. Many have addressed that here and elsewhere.

    I am furious that I’m being treated as if I WANT to have RA. I saw my Mom suffer with unrelenting pain, joint damage & years of fatigue. I’m simply being proactive, asking doctors to look at the big picture and listen when I tell them what’s happening in the body that I have inhabited for 50 years. I’d really like to get on top of this and avoid permanent joint damage if RA is starting to take over my body.

    Quite frankly, I am offended that the medical establishment wants to once again blame patients for poor communication, rather than take a look in the mirror when they are met with poor outcomes.

    What’s so stinkin’ hard about that?

    Sorry for the long rant, but this one really got my dander up. Can you tell? :-X

    Reply
    • June 24, 2010 at 3:45 pm
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      Jackie, I can’t thank you enough for coming out of the shadows today. You seem very well informed. I hope you can get a second opinion in case it is RA. Some articles I’ve read in the last year talk about methods of it spreading through the body. That is also my experience. Biologic treatments may to be less effective when we wait longer, which you’ve probably heard me say before.
      It shouldn’t be so “stickin hard” – I’m actually glad someone else thinks it’s offensive that the researchers / writers point the finger at us. I have never thought of your Alert Patient Syndrome, but I give it credence. Sometimes, I think I’m too clean, polite, and don’t look sick enough. I do make a great effort to look respectable when I go for an appt. Met the spine doc this week. He said I “don’t look like I have RA.” He kept doubting me & arguing with me about whether the RA was really anything to be really affect my life. So I told him : “No, I’m disabled & today was my first time getting cleaned up in 2 wks.” He just said, “thanks for not coming dirty.”
      can you tell this really is important to me too? :/

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      • June 24, 2010 at 4:17 pm
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        Kelly: It’s thanks to RA Warrior dot com and you that I am so well-informed. Until about 3 weeks ago, I never really tried to put all these seemingly random events together. If it’s not RA, I won’t stop seeking what connects the dots. I just think that any reasonable person with my experiences & family history would want to rule out RA first if possible. And I think it’s reasonable to expect complete testing instead of my concerns being minimized.

        Thanks for all you do. Your website is a treasure!

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        • June 24, 2010 at 5:30 pm
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          Jackie.. bless you and sorry that you are meeting such walls.. I want to Warrior all over your doc with you… but alas.. we have to do it in groups and kelly is certainly leading the way.. lets all stay out of the background!!!

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    • June 26, 2010 at 12:35 am
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      I think your “Alert Patient Syndrome” is all to real. I have a tendency to be polite and joke etc. which I think leads them to think I’m not as bad as I say…and you are right on when you say that you have been you for 50 years or so… I’ve had similar concerns, when I talked to my doc about my swollen middle finger way back when, she thought it was just a sprain. After several reminders from me, she sent me to a hand surgeon, who told me the finger didn’t concern me. What concerned him was that I had no idea why it was swollen. “if you did something to it, I’d think you would remember”. Months later when more than my finger was swollen beyond belief, I went to the ER and was dx within ten seconds of the dr walking in the room. (of course blood work confirmed, but he knew right away – as I suspected, something more was going on) So don’t give up, keep searching for answers!

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  • June 24, 2010 at 2:05 pm
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    joanne. having been in the medical profession since late 60’s i find that you have hit the nail on the head in 90% of the cases… unfortunately medical personnel are a cross section of personalities/emotional makeups/ and motivations as well as having a cross section of skills both medical and communication/social. ( not to mention the load they carry from their own life or their office managers/administratior/supervisior etc.)
    if anyone sees what i said as an excuse for the physicians/medical personnel ..read again and read on..
    OUR (patients)job is to write down what we are questioning..feeling.. planning.. and to summarize it.. handing a copy to the physician or intake nurse when we go into the office..
    then if the doc fails to address everything… get a new doc!!!
    when you feel good enuf to focus on being proactive..even if you have to write your note a week before your visit… you will be heard, get your answers, or you will have the definition of your doc and your relationship either beneficial or not.
    Good luck.. to all of us
    love to you all, from a seronegagive, nonsweller

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  • June 24, 2010 at 8:30 pm
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    I contend with these same issues as another seronegative non-sweller” (!) I join the chorus in thanking Kelly for starting yet another excellent thread that helps us to articulate and share our experience, and then work to improve our own and others’ care with this insidious and hard-to-define disease. Thank to all who have posted. This has been so helpful to me.

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    • June 24, 2010 at 8:36 pm
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      Thank you, Helen. It helps us all – including me. Maybe we can get some docs on the same page someday. 😎

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  • June 25, 2010 at 9:19 pm
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    What wonderful insightful comments! It made me think of a visit with my orthopedic surgeon a few years back. He asked me: “How are you doing?” I said “great, how are you?” smiling. I was in a good mood and I like to be cheerful towards people. He said “then why are you here, if you feel great”. Dumbfounded me and I proceeded to tell him about all the pain and limitations with my injury. I wonder if this has had an impact on doc.s underestimate how I feel?? I’ve always been “the alert patient”. One exception is recently, when I was fed up with not having any pain control methods. I cried, told the whole truth, no glossing or big smiles, she understood and helped me out, not questioning me. Indeed the NP was also a very good one, but I wonder.

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    • June 25, 2010 at 9:44 pm
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      Ronda, I felt that way too. There are such smart readers on this blog. Great information in the comments and I’ve really enjoyed the ones over the last week. Many of them are on the posts linked to in the current ones. I feel so blessed to hear from so many wonderful people.

      Hey Ronda, how are you doin? :dance: Haha. I do feel that “alert patient” thing has probably been a problem for me. They should see me 24/7 hurting or immobile, needing help to do anything at all. I guess it just sounds dumb when I try to explain it to them.

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      • June 26, 2010 at 12:19 am
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        “24/7” that’s exactly it Kelly, they’ll never see it….if they don’t listen to us and trust us, we’ll never get recognition of what’s really going on.

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  • June 26, 2010 at 12:16 am
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    This is right on, I know my former rheumy has always assessed my pain, or should i say severity of my disease, based on the amount of swelling I had at my appointment. This is quite bullsh** because, as I’m sure many of you can recognize, our swelling can be horrendous one day, and look not too bad the next day (seems as if every visit I was not swollen much). Doctors should definitely LISTEN MORE TO US…

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    • June 26, 2010 at 1:28 pm
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      I worked many years with a major health plan, so I’m not convinced (yet) that my doc is being difficult. I think he’s driven by the need to justify tests & referrals with documentable symptoms for insurance purposes. Sadly, some conditions are square pegs that can’t be pounded into the round hole of diagnostic criteria. Docs who “overtest” or “over-refer” are undercompensated or dropped by health plans.

      Thanks to another of Kelly’s posts, I’ll snap a photo the next time it looks like I have boiled eggs under the skin of my wrists, and sausages for fingers (breakfast, anyone?)

      In my brief experience, pain, fever, heat, tiredness precede swelling. Then the swelling subsides first. So by the time I see my doc, he can’t see me in all my lumpy glory. I have other complicating factors too – I never run a fever, normal temp is 97 due to a thyroidectomy; I have a really high pain threshold so I’m bad at articulating pain; and of course, I have a charming personality, so “Alert Patient Symdrome” is an issue. LOL

      In my case, perhaps a picture really will be worth 1,000 words.

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      • June 26, 2010 at 2:13 pm
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        thanks for the funny and helpful comment Jackie. typing w/1 finger right now. lol.

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        • June 26, 2010 at 2:53 pm
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          Sorry you’re hurting. I can type rather clumsily, but can’t even sign a check because it hurts so bad to write & I keep dropping the pen.

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  • October 8, 2010 at 9:50 am
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    Hi Kelly, thanks again for this wonderful website. I feel blessed to know that I have a good Rhuemy. She listens, touches, and asked questions…I too am seronegative, but she informed me that many of her seronegative patients have a worse time than than her positive patients. So she is very understanding. I too, am a very nice patient, with a high pain tolerance. I hate to whine…and so therefore I come across differently. But people do not understand RA. If you try to explain, they really don’t want to hear it. I was in the locker room after a swim, and a young teacher was in there. She noticed my hands were swollen. I told her I had Rheumatoid. She said “what is that?” I tried to explain to her, and as soon as I got the word arthritis out of my mouth she said oh that and changed the conversation…. So I find it easier to grin and bear it!!
    Thanks again Kelly for all that you do!!
    Best Stephanie

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    • October 9, 2010 at 12:45 am
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      Hi Stephanie. I love this! You said “I am a very nice patient” 😀 “with a high pain tolerance” – I have only met you here & on email & I knew that about you! I know you hate to whine -I’m the same. Please make sure you have pain relief if you need it – it has been a hard lesson for me. That woman needs to be educated – that reaction is too typical. Hopefully, we can build momentum for awareness.

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  • October 22, 2010 at 6:52 pm
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    I just want to say that when I do tell people about me. I always tell them I have Rheumatoid Diease. I don’t like saying I have Rheumatoid Arthritis.

    I think it is very important that Rheumatoid Diease be named just that RHEUMATOID DIEASE. I hope that within time and getting the word out people will come to understand this diease and what we go through.

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    • October 23, 2010 at 1:54 pm
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      I understand why you’d say that Betty. Let’s keep that part of the message before us & keep talking about ways we can accomplish this. If anyone reading hasn’t seen them, they should check on the Tags List for RA Awareness & see the posts about that – and the MANY comments there. Great ideas from readers.

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  • March 16, 2012 at 11:44 am
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    The situation Heather describes is the usually what happens when a patient with a chronic illness goes to the ER. After one visit to the ER, I have vowed to never go to the ER again, even if that means I die in my home alone. For many years, I worked in the ER and ONCE I was an RA patient in the ER. I now have permanent vision loss in one eye because the ER physician was more interested in explaining the difference between chronic and acute to me, rather than taking my symptoms seriously.

    Years ago (pre-RA), as soon as my alarm clock went off, I literally jumped out of the bed. It seemed to me that I was more tired, the more I tried to milk the morning for those few extra winks. I was energized when I jumped out of bed. I fooled myself into believing that I was not tired. Back then, it was “mind over matter”. I can’t jump out of bed any more, but trying to keep a sunny disposition helps to fool me into thinking “it’s going to be ok” or “you can do this”. So, as Gilly commented, we do tend to “gloss over” our symptoms most of the time. Is it that we are getting accustomed to our situation? Is it that we are trying to put our best foot forward? It’s our best defense against depression. Additionally, we don’t wish to be viewed as depressed, hysterical, a buzz kill, etc.

    There is a real difference in the way my rheumy acts toward me when I go in and tell him I am “doing great” and when I tell him that I’m not doing well. He seems frustrated when I report that I have not been well over the past month. When I report good things, I receive a favorable response. When I started seeing his ARNP, and 2 sets of eyes were on me, he seemed more interested in my situation. Especially when we were discussing my mouth ulcers which I thought were to be expected and dealt with, since he had seen them at my last appointment. When I mentioned that I have had them for about 6 months, and it affected my appetite, and was responsible for me being about 20 pounds underweight, the physician said “I thought you had a geographical tongue”.

    I went to a general practitioner last week. I decided I was safer having a multi-disciplinary team overseeing my health care. I explained to the new doctor that I just got over a stomach virus. I explained that I have RA, and that I often have to wear splints on my hands and my wrists to support my tendons while I am lifting heavy patients and sometimes it helps to reduce the pain to wear the splints. I was concerned that I was cross contaminating myself with the splints. Though I wear gloves, and wash my hands, the splints are fabric and so there is no way to clean them between patients. I requested a referral to occupational therapy to have washable splints made to support my tendons while I am working and having a flare. It makes perfect sense to me. The physician did not say that she would not order the occupational therapy, but today when I called the office to ask about the referral, I was told it was not ordered.

    I have already had one tendon repair surgery, and had absolutely no use of my dominant hand for over one month, with the exception of physical therapy. I never want to go through that again. I am single, and I must work. I believe that I am expected to work until I physically cannot do it anymore. It makes more sense to me to prevent injury to already inflamed tendons. Give me the tools I need to work with.

    I’m glad to see a physician here, reading our comments. I wish more of them would. I have already shared with you, that on my first appointment with my rheumy he said “you’re not one of those E patients are you?” I didn’t know what an “E patient” was back then. I guess he’s going to be pissed when I go to my appointment Monday and request he send me to OT for splints.

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  • March 16, 2012 at 12:04 pm
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    Go Jackie!

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  • March 17, 2012 at 6:00 am
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    Belinda, I had heat-moldable plastic splints made that go half way up my forearms. They support my whole palm, underside of the arm, and had them go up the sides of my arms and wrists for additional support. held on with 3 velcro straps. With lifting patients or pushing wheelchairs, in time you may need new ones made if you are really hard on them, but they’ve allowed me to put surgery off so far, for many years now. i understand where you’re coming from. These would traditionally be thought of as resting splints, vs. working splints, but I had one that tilted one wrist up, and the other wrist is relatively straight. My wrists have both collapsed, but I believe in slightly different ways. And one was much slower than the other in doing so, but the second one is more painful and weaker. I don’t know what I will do when other tendons finally rupture. Only had a minor one, and one other that is very stretched out but still somewhat functional. Extensor tendons. Sterilizers and detergents may be more wearing on the splints but they are worth it. Don’t leave them in hot cars or put in the dryer or hot washer as that may be hot enought to melt or deform the plastic, but really they are quite sturdy. Good luck getting a referral.

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  • March 17, 2012 at 6:07 am
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    PS though, I cannot slide patients up on chucks in bed by myself and am not much help with someone else helping. Am o.k. lifting from semi reclining or sitting postion, just not laying flat. I take care of a heavy hemiplegic who cannot get up by self or self-ambulate aside from minor pivoting. fortnately sleeps in a recliner. I use forearms to lift, not wrists, but is hard on shoulders, knees and feet/

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  • April 23, 2012 at 5:37 pm
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    Having looked on almost every website in my quest for information on Methotrexate in the treatment for RA I have found this site which has answered most of my questions. I now feel far more confident to ask questions when I see my Rheumatologist. Thank you

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  • October 4, 2012 at 2:19 am
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    Besides the “no joint swelling” (or not enough), I’ve also had the “I think you have too much soft tissue swelling.” issue. That or “it’s just not the right kind of swelling”
    I would be left wondering just what kind was “the right kind” or how one could have swelling without soft tissue being involved.

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