Disparity Between Rheumatoid Arthritis Patients & Doctors over Disease Activity | Rheumatoid Arthritis Warrior

Disparity Between Rheumatoid Arthritis Patients & Doctors over Disease Activity

Will one more RA disparity study make a difference for patients?

Discrepancy & Rheumatoid Arthritis: inseparable as thunder & lightning

Discrepancy. A word I probably used three times during the first four decades of my life.

And then came Rheumatoid Disease. This word is the shortest explanation for the reason RA Warrior exists. I was stunned by the discrepancies between the experiences of people living with Rheumatoid Disease and the way it is described in medical literature.

In a very early blog post, I asked questions about discrepancies of typical Rheumatoid Arthritis. Short but to the point, it was like a Where’s the beef?ad for RA.

Later, we examined several specific discrepancies including the proper role of blood tests, conspicuous swelling, morning stiffness, cricoarytenoid arthritis, RA in the spine, DIP joints, and other issues.

Judging disease activity: differences between patients & doctors

hanging in thereWe have also specifically addressed the well-documented disparity that exists between the way that rheumatologists judge Rheumatoid Disease and the way patients do as in Determinants of discordance in patients’ and physicians’ rating of rheumatoid arthritis disease activity, Arthritis Care & Research. We’ve discussed the well-established fact that doctors consistently underestimate disease activity in comparison to patient ratings, and the work of Dr. Ethan Basch showing that doctors tend to downgrade symptoms in cancer patients as well.

Over two years ago, I explained that the difference in the ways doctors view swelling is one key to understanding the disparity in disease activity assessment with Rheumatoid Arthritis.

New RA assessment disparity study contrasts pain and swelling

In a new study using tools for global disease assessment, Dr. Daniel Aletaha of Medical University Vienna in Austria found that patients relied most heavily on “pain” to assess disease activity while clinicians relied on “swelling,” Discrepancies between patients and physicians in the perception of rheumatoid arthritis disease activity, Arthritis & Rheumatism.

If you’ve been following this blog very long, you may wonder why that is news. But it is! This study clearly documents a problem we’ve discussed here for years: to many rheumatologists, swelling is the preferred indicator of disease activity in spite of the low level of correlation between disease activity and conspicuous swelling. Three-fourths of about 1500 patients we surveyed last year on this site experienced a lack of correlation between swelling and documented joint damage (study by Rheumatoid Patient Foundation).

Aletaha acknowledged “Many times there is a discrepancy between patients’ and doctors’ views of disease activity, with doctors providing a better rating than the patients,” Doctors and Rheumatoid Arthritis Patients Differ on Perception of Disease Activity, Wiley press release. Aletaha concludes, “Understanding the reasons for a discordant view of disease activity needs to be recognized to allow a shared decision making in management of RA.” This could be very good news for patients as long as future efforts to “resolve the discrepancy” do not include more nonsense about excusing Rheumatoid symptoms with one so-called syndrome or other or the use of anti-depressants.

Key: Inadequate constructs oversimplify Rheumatoid Disease activity

The study did not examine what is meant by “pain” or “swelling.” Definitions are a crucial part of the problem. Patients and rheumatologists do not agree about what is swollen. And there is more to a patient’s experience of disease activity than swelling and pain, such as function. When a patient considers that a joint is affected by RA, she may consider several sensations through which she recognizes disease activity. In addition to the blanket term “pain,” her experience could include tenderness, weakness, grinding, clicking, popping, puffiness, sharp stabbing pains, drifting, twisting, pulling, redness, bulging veins, dislocation, aching, bursitis, numbness, stiffness, loss of dexterity or other functional problems, sensation of ripping detaching. Most of these could only be observed by the patient herself and might be part of the umbrella term “pain.” If a clinician is interested in knowing about disease activity in a particular joint, he must hear from the patient who is unfortunately keenly aware of disease activity.

Two ways to improve patient care immediately

Commenting on the study, Dr. Cliff Bingham, MD of Johns Hopkins told Medscape Medical News, “We need to be sure that we are addressing pain in this disease,” Patients Rate RA Disease Activity Worse Than Physicians Do. 1) Treating pain is one necessary aspect of treating Rheumatoid Disease that is neglected by too many rheumatologists. 2) Recognizing the actual scope of disease activity and the lack of correlation to conspicuous swelling would also go very far toward improving rheumatology care with its goal of “tight control” of the disease.

Postblog: Referring to the perceived symptoms of Rheumatoid Disease as “just pain” is an erroneous concept showing little awareness of RA disease activity and even less compassion for fellow human beings. For people living with the disease, disease activity amounts to more than joint activity. But joint activity itself amounts to more than swelling or pain. Fortunately, this new study once again brings the topic of disparity to the forefront.

If you’re interested in improving rheumatology care, please also read: The 10 Fundamentals of Care for Rheumatoid Patients, with printable list.

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 “Disparity Between Rheumatoid Arthritis Patients & Doctors over Disease Activity

  • August 3, 2012 at 7:48 am
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    No greater truth was ever spoken! Thank you for this, Kelly. The amount of patients right now agreeing with you, honestly, would be staggering in the eyes of a rheumatologist who bases their care on inflammation. Will they ever catch up to what we know?

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  • August 3, 2012 at 9:40 am
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    This article really made me think of my rheumy problem, which happened 2 days ago, and which I posted about on my blog:

    1.She was an hour late. Forgot she worked that day. I guess she was drinking coffee and relaxing at home.
    2.She saw me for all of 5 minutes.
    3.She said the bone scan showed no inflammation. Um? I couldn’t argue with that: of course a bone scan didn’t show inflammation. I still couldn’t quite figure out if she trying to say that they miraculously didn’t detect more erosion or if for some reason she is so stupid that she figured that they were using a bone scan to detect swelling.
    4.She said there was “no visible swelling and therefor all of my pain is attributed to fibromyalgia”. Right… not what you were saying 3 months ago. You were listing off joint after joint. And guess what? I might over-think my pain often because of how anxious I am, but I’m not delusional enough to imagine my toes and knuckles being puffy as hell. Even if I was, though, surely Jordan, my dad (who is convinced I’m an over-swollen hypochondriac, no joke), my mom, her boyfriend, my friends…surely they’re not all as delusional as I am?
    5.She didn’t even look at my joints before saying there was no swelling. She spent literally all of 10 seconds looking at my toes and fingers, and when she looked at my knees, she didn’t even have me take my baggy ass jeans off (baggy in the knees from when they were even more swollen, at least). Surely she should have at least given me a fair look before saying there was no swelling?
    6.Because she saw no swelling, she refused to put me on another medication. 3 months ago, the only reason she didn’t put me on a methotrexate/Enbrel mix was because I couldn’t afford it. I’m now completely unmedicated (besides my fibromyalgia meds and pain killers) because I had no swelling and she said “the side effects wouldn’t be worth it”. I’d agree, if not for the fact that every day, my joints get more swollen, my fingers drift further into a state of deformity, and I’m just generally in agony constantly.

    Of course I understand that a lot of my pain is related to fibromyalgia as opposed to my RA. Of course I understand that I tend to over-think this. Of course I understand that my swelling is far less severe than it once was. But this disease is still, without a doubt, active, and still, without a doubt, requires treatment. She didn’t even spend 5 minutes on me, didn’t want to be there. I can’t even believe this happened today. It blows my mind that a doctor could be so … ignorant. Now I’m terrified that I’ll get even worse without treatment, and will, like so many years ago, have to go through more hell in order to “prove” myself.

    Reply
  • August 3, 2012 at 9:41 am
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    The last time I saw my rheumy…He said “I think we have the RA under control, just not your pain”….Really!!!! I couldn’t believe it 🙁

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  • August 3, 2012 at 3:52 pm
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    I am so sorry you had to endure this. Pain is enough, let alone someone dismissing your experience.
    Get a new doctor! There must be different options.

    You can’t wait for this person to be “convinced” to get the care you REQUIRE.

    Best wishes to you.
    Jessie

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  • August 3, 2012 at 6:10 pm
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    Pain is subjective. Doctors, being scientists, want to see something objective and measureable. Swelling is more objective, but . . . I’ve always had long, thin fingers. They can swell quite a lot before they start looking fat. Years ago, someone described my toes as “prehensile.” I can’t spread or raise them anywhere near as far now, but without someone knowing the old normal, how can they assess the new normal? I’m lucky to have a doctor who doesn’t minimize, but maybe I’ll take my now-unwearable wedding ring in with me next time as a reference.

    Rebecca (#2), sounds like they’re having big fun playing pass the buck with you. Does the doc who treats you fibromyalgia say, “Oh, that’s from the RA”?

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  • August 3, 2012 at 7:55 pm
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    I think we need to go in with a plan. Cell phone or iPad pictures of swelling dated. Close the exam door, and SHOW THEM JOINTS. Because we are mostly women, we backdown, don’t make waves. I’ve been sick all year, 4 ER visits, once hospitalized. I just had shingles…I was told to use my daily pain meds. I suffered, nobody seems to care. Doctors are ” afraid” to give me more meds, what are they afraid of? I was in 10/10 pain for a week. Waiting for the fourth hour so I could take my regular meds. Ten days after shingles I got a kidney infection. In the ER I had to ask to send a urine culture. The doc never looked at my shingles or my joints WTH?. I have been off methotrexate for months now, cannot wait for the high dose steroids to be done(sic), then my fun will begin again. We got to get tougher. These 5 minute appointments, that cost hundreds of dollars, aren’t fair to us.

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  • August 4, 2012 at 2:08 pm
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    rawarrior Right, I think if it’s about treating #pain then there are so many #alternatives available – and they never mention #stress

    Reply
  • Pingback: Who should measure outcome – patients or health professionals? | Dr Philip Gardiner's Blog

  • August 5, 2012 at 10:49 pm
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    I am a 21 year old who has this disease my entire life and it’s so discouraging to think about the fact that most doctors just don’t care. We are young. We have so many years left to give and we are expected to endure them in constant pain. It is frustrating to say the least. Thoughts with all od you

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  • August 6, 2012 at 2:08 am
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    I recently got the ‘attitude’ during recovery from abdominal surgery. My surgery was early in the morning and I stayed overnight. I was on a PCA pump for pain but it was only good for two pushes of the button EVERY 4 HOURS. I told the nurse that my pain was not being controlled- she was very kind and throughout the day gave me demerol through my iv. I’d feel better and fall asleep- as one should be able to do after surgery. Then the day shift went home…. soon my pain was out of control. I had two people caring for me- I don’t know if they were RNs or what. The one lady was kind and concerned, but not the one that could make decisions. The other was a young man- he was not concerned. I cried and pleaded that whatever the PCA was set on could not be right- I begged this man to please not let me suffer like this. He asked me if I took opioids and I said “yes- it’s on my med list, I have rheumatoid arthritis and had to stop my RA drugs for surgery”. I might as well have said I have a blister. He said “I don’t know what to tell you- obviously you have opioid tolerance so you’ll just have to deal with it”.
    While this conversation took place the other lady went and got the on call MD. He had heard part of this conversation and when he came in my room he started telling me “we can’t give you so much morphine that you stop breathing”- he truly thought that I was getting more than enough pain meds- I asked him “please….PLEASE.. just check the PCA machine, it only gives me two doses then nothing for four hours” (which the nurseman knew). The doctor did check, he didn’t listen to the nurseman, he checked it himself, then I heard him talking to both people outside my room- he said “8mg in four hours is nowhere near enough. It should be set to 25mg at the very least for this patient”.
    I found out later that the doc was a pain specialist. The nurse that had the sense to go get him told me. She knew what was going on was wrong, and when I’m up and around I’m going to find out who she is so I can thank her.
    If I didn’t know better I’d say that the nurseboy knew it was wrong too- but enjoyed being cruel.
    Didn’t mean to ramble on but this just happened last week and I needed to share it here. Pain is the fifth vital sign, and nobody should ever have to ‘get used to it’ when there is treatment available.

    Reply
    • August 6, 2012 at 8:53 am
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      Thank you for taking time to type that out Lisa. I hope the rest of your recovery goes better. There are all kinds of people everywhere – whether we have a printer who delays & lies to us, which I had the last few weeks, or on airplanes where we see a very wide range of helpfulness, or even hospitals. And unfortunately, when you’re the patient it can be awful when someone cold or incompetant has charge of you.

      Reply
    • August 23, 2012 at 9:53 am
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      I’ve had experience with people like “nurseboy”. They make their own decisions about what’s wrong with people and when they are in positions of control they push their own agenda rather than following the doctor. I’ve had the pleasure of bringing at least a couple of them to the attention of their employers and seeing them get in trouble. I’m so sorry you were subjected to this and I hope you recover quickly.

      Reply
  • August 6, 2012 at 4:31 pm
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    I can relate to the skinny fingers. I am heavy, chubby and large boned with very long skinny fingers. The Rheumy I was seeing did not think I had any swelling at all and pronounced me in remission. I was happy to be getting a good bill of health and accepted that. I had lost function but thought it was permanent. Still the question is: If I was doing so very well, why did my joints still hurt and why was I still so stiff and swollen (barely visible to others)? I never once thought to question my state of being. I just thought it was part of the permanent, irreversible damage. I wasn’t as crippled as before, so why complain? By the grace of God, I met a Rheumy (went for a pick- your- brain session) who took one look at me and noticed that my joints were swollen and that I had dry eyes and mouth and various other things (possible Crohns) the other nice but traditionally trained one hadn’t noticed. (i still feel loyal to her as she got me from almost crippled to functional) The new doctor pointed out that I was heavy- not to get me to consider dieting, but to point out that she thought I was being under medicated for my weight. She asked why I was using NSAIDs and I said because I am always in pain and need them. She nodded and suggested that we double my biologic dose and see what happened. She thought I would feel much better and not need the NSAIDs so she reinstututed Methotrexate, which three doctors said I should never take again because my liver enzymes were elevated and I have stage 1, grade 2 fibrosis. I mentioned that to her but she said she thought it would help more than hurt me. I agreed after hearing her rationale and am happy to report that she was right. I feel 100% better and am no longer taking Mobic and all the other OTC stuff I took when that didn’t help. I’m a teacher and have to get through my day. I’m happy to report that my liver enzymes are back to normal and I am losing weight without much thought, because my unbearable fatigue is better controlled and I can move more readily to exercise and stretch my body back to normal. I don’t know if the fibrosis is reversible but two doctors said they have seen pts livers regenerate, I also don’t know if the fibrosis is caused by autoimmunity one Dr says yes and two say no, or damage from so many things I have had to take as my body degenerates including statins, I am hopeful that regeneration is possible. I surely don’t want to undergo another biopsy, but I guess I will if I have to. That was a living nightmare in itself because I had to lay still for several hours.

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    • August 6, 2012 at 10:23 pm
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      Thanks Rosie for sharing that. I’m so glad you found a doc who would think of you as an individual and treat you as needed to help you do better! Inflammation can be present w/ swelling that is subtle oftentimes, or maybe most times, and it takes a good doc who looks carefully and examines properly to see it.

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    • August 7, 2012 at 4:02 am
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      I totally understand the swelling that is not visible to others. All bodies are different. My knuckles from piano playing are huge! It wasn’t until the swelling of the fingers was the size of my knuckles that the rheumie could see it. Where do you live? Rheumie 3 says things that are untrue (like RA and PsA can’t kill and expects me to be text book) and I am thinking it may be time for #4. I am in Sac area.

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      • August 7, 2012 at 10:49 am
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        Hi Jenn- I’m in Reno and my rheumy is really great. She listens to me and we make medication decisions together. Her name is Julie K. Thomas from Arthritis Consultants. I don’t know if that’s too far for you but thought I’d throw it out there. You are welcome to email me if you like- Kelly has my email.

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        • August 9, 2012 at 3:51 am
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          That is far. I will keep that in mind though, thank you.

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          • August 9, 2012 at 11:04 am
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            I’m sorry that its far. Lisa is a wonderful friend.

    • August 9, 2012 at 12:27 am
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      Thank you Kelly for taking the time to administer this website. I have posted twice and both times felt incredible support from you. I speak for many, I think, and appreciate everything you do for the RA community at large. I hope to meet you some day, if I am so blessed. Please let me know if there is anything I can do to help you.

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      • August 9, 2012 at 10:55 am
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        Hi Rosie,
        Talking with patients has been a very big part of my life over the last 3 and 1/2 yrs and honestly, I am the one who feels blessed. If you like, you can email me sometime and tell me where you live and if I come to your area, I’d be glad to try to get together.

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  • August 8, 2012 at 3:57 pm
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    I can’t tell you what a relief it is to see you mention bulging veins. The veins in my hands have done that for years and they almost always accompany the times I feel like the disease activity is higher. I’ve had rheumatologist after rheumatologist dismiss this as a sign of anything happening. It happened again this morning along with some fairly noticeable swelling (which is not normal in my case), horrible stiffness, and general feeling of being so sick. It made me feel so defeated to know that my rheumatologist will dismiss it again when I tell him about it at my next appointment.

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  • August 10, 2012 at 10:57 am
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    I’m in the process of firing my Rheumatologist.
    I saw him for the first time in April of 2011. I had been experiencing severe hand, wrist, elbow and knee pain. My bloodwork showed negative RH factor, but high Anti-CCP.
    His initial exam was minimal, he did a knee x-ray, told me I have OA in it. Told me I have tennis elbow, in both elbows, wear splints. Said it looks like RA, but I don’t see any swelling, so there must not be any damage…And then told me to come back when I had a “Real Flare”!
    I was trying to figure out what a real flare felt like if this wasn’t one. I had been on naproxen and tramadol for about 6 weeks before I saw him.
    I bucked up until September when I had had just about all that I could take. I was leaving work early on the bad days, hitting the couch the minute that I got home and spending most of my weekends on the couch so I could face work again on Monday morning.
    He did start me on Sulfasulazine in September, but again told me that since there was no swelling that he could see, he thought that I was just fine. My favorite response from him was, “Even God needs a day of rest.”
    My PC swears by him. I have seen my PC for about 30 years, so I was led to believe that the Rheumy, must of just been having a bad day.
    I went back in November and the Rheumy was “better”. He increased my dose and sent me on my way.
    He has since changed my med to Arava, I’ve been on it for 3 1/2 months now. Last week when I told him that it wasn’t helping, he told me that I have to try it for 2 more months. He said that it is a Rheumatic medication, so if it doesn’t help, he doesn’t know what to do with me. Really? Because Sulfasulazine and Arava are the only RA meds?
    So, needless to say, he is being Fired, and I am working on finding a new doctor.
    Sorry for the rant. I just get so frustrated that just because I don’t have swelling on the days of my appointments, he doesn’t believe that I ever swell. I have been on Naproxen and Tramadol since March 2011. The pain days aren’t any better. How do you determine joint damage, or progression of damage if you’ve never taken an xray?

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  • August 15, 2012 at 1:26 pm
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    Hi,
    I saw my rheumy yesterday. I had my list of questions, my list of all my pain medications, Kelly’s 10 things every RA patient should expect for care and a report from my symptom diary. The nurse took my weight and vitals. The doctor came in and sat at the desk with her computer. She said she wanted to review my case and was silent for awhile and then asked me what has changed. I went thru my questions. I am good at running a meeting, so that is what I did. At no time, did she ever examine me. I offered her my pain diary, that had pictures of my hands and feet. She said she did not want those and that the pictures would really be of more value to me. Is it normal to not ever be examined?? Next appt is in 3 months….do I need a new doctor? thanks much for your advice. I very much appreciate your input. It’s hard to advocate for yourself when you have RA. BEST.

    Reply
    • August 15, 2012 at 10:50 pm
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      Dear Jessie, These are such important and common questions. I’ll do my best.

      It is very common to not be examined. And I’ve also had the doctor refuse to look at my pictures as well. HOWEVER, I don’t think it’s acceptable. They need to examine your joints, and let you describe your other symptoms. It is also appropriate to at least look at the photos of joints and enter some of them into your record – and other patients have said their dr DOES do those things. What you’re saying sounds discouraging, but you could try one more time I suppose. I’d get a copy of your doctor’s notes so that you know what the dr’s view of your case is. Then schedule another appointment to discuss your concerns – that you want a joint exam and that you want her to look at the photos of your joints. That’s the only way they will see many of us swollen – the timing of appointments is not that lucky.

      Do I think this will change how she treats you? It’s doubtful, but you could give her a chance to see if she will step up.

      Personally, I’ve tried both ways – going back to try once more to see if they will examine me. Or moving on because I can tell that I’m not going to get care because my symptoms were dismissed and the doctor’s notes were extremely inaccurate.

      Note: There are some posts about exams, joint counts, and measuring disease activity where you can read other comments from patietns w/ similar experiences.

      Reply
  • August 16, 2012 at 9:45 pm
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    Kelly, what would happen if we notified our insurance companies that we weren’t examined? I remember years ago when the insurance companies found out that doctors in a hospital were leaving all the exams and notes to be do by residents. Things changed quickly. Every doctor who bills a patient should have physical contact with the patient. If not ,they shouldn’t get paid.

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  • August 23, 2012 at 10:00 am
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    It’s reading stuff like that this that makes me wish I had become a rheumatologist.

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  • August 23, 2012 at 11:57 am
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    Swelling does not always need to be present for damage to occur. I am living proof of that. I showed my rheumatologist my right ring finger at one of my appointments. It had been hurting but had no swelling ever. It was becoming dislocated. Also, I have recently started physical therapy for plantar fasciitis. The evaluation examination showed joint damage in some toes and ligament and tendon damage in my feet. I rarely have swelling there but the damage has already started. The doctors also cannot rely on bloodwork only as I have had extremely high inflammation levels(sed rate and CRP) when I have been feeling relatively well and low levels when I have been feeling horrible. I have a good rheumatologist but there are only three in my area and she is always so busy. I wish more doctors would go into this field.

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  • August 23, 2012 at 11:58 am
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    I believe that if patients expected their physician offices to be Joint Commission Accredited, there would be less disparity. Hospital care has improved since Joint Commission Accreditation became a national standard. Those hospitals who are accredited are recognized to have met a set of standards. The goals of Joint Commission are: “To continuously improve health care for the public, in collaboration with other stakeholders, by evaluating health care organizations and inspiring them to excel in providing safe and effective care of the highest quality and value.” http://en.wikipedia.org/wiki/Joint_Commission
    Most hospitals are accredited and they use it as a marketing tool, to draw patients to their facilities. US Reports and World News list the 100 Top National Hospitals.
    “Identified from nearly 3,000 U.S. hospitals, our award winners demonstrate that high-quality patient outcomes can be achieved while improving efficiency. If all hospitals performed at the same level as the 100 Top Hospitals award winners” http://www.100tophospitals.com/top-national-hospitals/
    I think if we applied the same standards and expectations to our physician’s, the quality of our healthcare would improve, patients would be empowered, and crappy physicians would be easily identified or at least the good physicians would be easier to find.
    I currently feel at a disadvantage with physicians. If I change physicians, it could be misconstrued that I am drug seeking or in some other way crazy. I feel handcuffed with duct tape over my mouth much of the time. I understand how a patient’s medical record can contain false information, misleading information. I have worked in enough health care settings to know that most physicians care more about themselves; sleep, money, and 3rd party reimbursement than they care about their patients. There needs to be someone else watching and raising the standards. We need to demand more.

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    • August 23, 2012 at 12:44 pm
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      Belinda, you’ve had a lot of good input over the months. Could you email me so we can talk more?

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  • August 23, 2012 at 1:07 pm
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    It has been my experience that when you report symptoms to physicians, they get really ticked off if you attribute the symptoms to RA. They will explain the symptoms away in another direction, but with no follow up to rule in or rule out the cause.
    I swear there is a conspiracy, and some physicians are road blocks. Do physicians get some kind of kick back from 3rd party payors to prevent patients from spending healthcare dollars or from applying for disability.

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  • September 12, 2012 at 1:06 pm
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    In reading many of your articles, I am wondering if my symptoms are brushed off since I don’t have the redness, warmth or swelling that I am asked each time. I don’t have the redness and warmth. I do at different times have swelling, but not on the days of my appts. My bloodwork shows normal levels basically. I am on remicade and methotrexate for the RA. But I also have Fibro, so i feel as if he is attributing my pain to that. But I am beginning to wonder now which it might be. My thumbs and some of my fingers hurt everyday, as well as my feet. He gave me meloxicam for the pain in my feet. It seems to help for the most part, but it doesn’t help with my other pain. And I am finding more aches and pains as time goes on. How do you know what is causing your pain? I know you probably can’t tell. I know when I have a Fibro flare as my whole body is in pain.
    Should we routinely each year have some kind of scan or MRI of our bones to check on joint damage? My doc feels my RA is under control. But how do you really know? Now I’m wondering.

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  • November 14, 2012 at 10:45 am
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    I am so confused by all these tests as well! I was diagnosed in 2004 with RA, with symptoms since 1998. I have been on SSI disability from my RA since 2011. My Rheumy retired last year and the new dr. is saying now that I don’t have RA. He says that my hands are puffy cuz i am overweight and he cannot feel any inflammation. My bloodwork shows a positive RA factor and the CCP was negative.I really am confused and don’t understand what to do. My joints in my knees give me the worst pain,along with my thumbs toes and elbows. I have all the same symptoms of severe fatigue and general feeling of malaise. I often get that numbness and tingling in my hand and feet. Can anyone help me out? I do not understand why the dr. thinks now i don’t have it when i took so long for me to find i did have it. Thanks so much Lori

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    • November 17, 2012 at 8:59 pm
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      Dear Lori,
      I’m so sorry. We’ve heard of this happening several times. It seems to come from the fact that Rheumatoid is diagnosed according to the opinion of a doctor, with the guidance of criteria. Here is a link to the current criteria in case it helps: http://www.rawarrior.com/american-college-of-rheumatology-redefines-rheumatoid-arthritis-part-3/
      What I suggest is asking the new guy what he thinks is the cause of your symptoms and positive blood test. If he doesn’t want to treat you, you might have to get another opinion.

      Reply
  • November 30, 2012 at 3:22 pm
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    After reading thorugh so many horror stories written here – I hardly think mine is worthy but needed someone to share with. Went to see my Rheumy yesterday feeling like I needed some time off from work – I have went through a divorce, I am 2 years into RA, very aggressive – treating with methyl injections and Enbrel, prednisone for flares and a gracious family doctor that manages pain for me since my rheumy does not believe in treating pain – well during my visit I was telling her that I was having more frequent flares, sickness from meds, fatigue out the wazoo and ask would she please write a letter so I could go on short term disablity (that I pay for) and see how I feel after much needed down time – her response was that my blood levels showed that my inflammation looked under control – that may be so but is not what I am experiencing. Just over the Thanksgiving holidays my entire left hand went out and would not move and omg the pain for the entire day. She agreed to write the letter for “some time off” but handed me some samples for Cymbalta as she headed out the door. I am so tired of being tired and being treated like I don’t know what I am talking about – maybe I just need another doctor. Question – can you have normal blood levels for inflammation and still hurt like I do and have frequent flares and I have already lost use of my ring finger and little finger on right hand. Just need a friend 🙂

    Reply
    • November 30, 2012 at 3:55 pm
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      I have heard this sad story hundreds of times. It is such a shame there are doctors who say this to people every day. And your extra comment about the fibromyalgia syndrome fits the story exactly. First: I’m so sorry someone dismissed your rational discussion of your physical symptoms related to your rheumatoid disease.
      Second: there is no way a doctor or anyone can diagnose or measure your disease activity by a blood test alone, especially if it contradicts your symptoms. I’ll give you some links to read through. Take your time and look at the studies. The blood test cannot determine whether you have inflammation or not.
      http://www.rawarrior.com/blood-tests-for-rheumatoid-arthritis-part-2/
      http://jrheum.org/content/36/7/1387.abstract
      http://www.rawarrior.com/all-i-want-for-christmas-is-my-crp/
      Take heart though – there are many stories here from people who find good doctors who listen to symptoms & look at the patients more than the tests. Maybe this one will listen or else you will find a better doctor who knows more. AND, you are NOT alone. There are so many here who have been through the same dismissiveness and have eventually found better care. We are glad to listen.

      Reply
  • November 30, 2012 at 3:29 pm
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    And I also forgot to add that she told me maybe my fatigue was related to fybromyalgia – what? I have never been diagnosed with this………

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  • December 3, 2012 at 3:36 pm
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    Kelly – thanks so much for your response – it helps sometimes to know we are not alone 🙂 I read through the studies and know I am not crazy and I know that Cymbalta is not the answer either. May God bless you with good days through the holiday season.

    Reply
  • November 26, 2013 at 12:50 pm
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    Sometimes I don’t have swelling yet pain & stiffness increase so something is happening. Other times when I swell there is no pain. It is after the swelling goes down when I feel the pain. My Rhuemy does not seem to want to do a ultrasound to check how meds are working. Says that is only done to make a first diagnosis or if a operation is needed. Is the HMO giving him bonuses for not doing procedures I wonder?

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    • November 26, 2013 at 1:10 pm
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      it’s possible Bonnie, but it’s more likely that he just can’t understand what he doesn’t see. If he wasn’t trained to know that you can have symptoms that are too subtle for him to see at first glance, he just assumes that if it looks “ok,” it is. He is also likely not trained in musculoskeletal ultrasound for diagnostic purposes – few in the U.S. are yet.
      You might also be interested in the new post I just published http://www.rawarrior.com/remaining-pain-with-rheumatoid-arthritis-treatment/

      Reply
  • November 13, 2015 at 1:52 pm
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    It looks like I’m over 3 yrs late to this discussion, but if anyone reads my post, I’d love to hear any insight. Guess I’m about the only guy in this post – guess I drew the short straw in getting hit with RA as a guy.

    Has anyone ever heard of any success stories in managing RA with marijuana? Fortunately I live in WA state, so it’s legal here. And then the question becomes what strain of pot does one need to try and combat this crappy disease? The pot industry is far more involved than I ever realized…….how much THC vs CBD’s does one do for RA?

    I’ve been on I think 5 different biologics since I was diagnosed with RA 3.5 yrs sgo. I’ve only had modest improvement with the biologics, while I’m probably poisoning my body with this crap.

    Any thoughts?

    Reply
  • October 13, 2017 at 2:15 am
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    You couldn’t be more correct in your post judging disease Activity the difference between patient and doctor. I have suffered ongoing joint pain in my fingers, elbows, ankles, front of ankles, wrists, Neck and back. I have ongoing constant crepitus in my neck and front of my ankles, with off and on crepitus in elbow and wrists. My joints are stiff and hurt although no swelling( except once in 2008 in my ankle MRI simply showed edema it lasted awhile)

    Positive CCP twice and negative twice. ANA positive Anti- RNP positive once then negative. Anti as-B positive once then negative.

    Current MRI of spine DDD, facet hypertrophy through out low spine, disc bulge and narrowing. I am in PT now.

    I went to my pcp and my Rheumatologist recently. My Rheumy was horrible as usual. I told him after explaining what hurt ..you always downplay my symptoms . He finally blew at me and said” no swelling” , you don’t have any classic symptoms..In fact he said I never believed you ever had any Rheumatic issues… I said the front of my feet hurt so bad I can barely walk. His response was rude well maybe you have Arthritis! I said well don’t you treat Arthritis.? He then said it’s Best we part company ..and we did. This doctor kept me on plaquenil and had me come back for follow ups… I keep asking myself why he would do that if he felt I didn’t have Rheumatic issues.

    All I know I hurt and before I left his office he said I think you have big fat Fibromyalgia! I said okay don’t you treat that… he said he didn’t have time that I could go to my pcp.

    Bottom line my Rheumatologist saw no swelling, no classic signs of RA therefore he doesn’t think I have it. A previous Rheumatologist in 2009 told me I did have it. I hurt but who can I turn to.

    Colleen

    Reply
    • October 14, 2017 at 4:23 pm
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      Dear Colleen,
      I’m so sorry. I’ve heard this story many times – and I’ve also lived it. It is a long-term struggle to change the system & I have some plans for that – but meanwhile you need to find a doctor who knows better.
      Reading this & the comments pages will make you know for sure you are not alone: http://www.rawarrior.com/rheumatoid-arthritis-swelling-take-two/

      Reply
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