Inadequate & stupid? No, just a victim of someone's training | Rheumatoid Arthritis Warrior

Inadequate & stupid? No, just a victim of someone’s training

car eyelashesI don’t know where I’ll find the courage to write this. Some stories – my own or others’ – I’ve saved for a book (I’m working on a couple). At first I think, what will happen if I tell this? Then I realize it must be told, because it’s not my story – it’s the story of too many people.

Last night we got home from an appointment and I could barely hold back tears. The comment from Nancy C was waiting for me. (I’d approved comments from the phone, but hadn’t read them). After I read it, I had a good cry too.

I just came back from my visit to my rheumy… I came away very discouraged, feeling like a hypocrite, a big baby and a complainer. I had a list of questions for the doc that were a concern to me, i.e., I have stabbing pains – her answer that cannot be caused by the RA. I have tendons that will spasm until I am in tears, again that wouldn’t be caused by the RA. I have pain in my hips until I can’t walk at times, again that wouldn’t be caused by the RA. Doc told me the only joints that the RA would cause pain in is the small joints of the hands and feet. I got so discouraged that I just gave up on my list of questions. I was on Humira and three months ago she changed me to Simponi. I told her today that I was doing better on the Humira. She said she didn’t see any sense in changing me back to Humira even though the Simponi seems to “run out” in about 2 1/2 weeks, 1 week and a half before my next injection.

I am so thankful for this site. At least I can read other’s experiences and not feel so totally inadequate and stupid. Thanks for letting me vent. I’ll go have a good cry and then tomorrow will be another day.

Thank you Kelly for all the work you do to fight for all of us! Love and Prayers to you

Inadequate and stupid? Nothing could be further from the truth. How is any of this her fault? Of course it’s not. You can do your best and still not get good answers if the person doesn’t know any better. Even if the person is a doctor. There, I said it.

Why do we always feel like it’s our fault?

There is so much pressure on patients to not speak up when doctors get it wrong. One man was sued for telling how his father was mistreated by a doctor in front of three witnesses. The Minnesota Supreme Court sided with the family, but they lost two years’ salary, time and suffering. Everyone makes mistakes; every profession includes some less adequate technicians; but in medicine, it is more often tolerated or covered up. Volumes have been written about those topics, so I won’t say more. If you’re interested in progress, I recommend the blog of Trisha Torrey on About.com and the new book by Leana Wen, M.D.

How do I know how Nancy feels “inadequate and stupid” after a doctor saying the “only joints that the RA would cause pain in is the small joints of the hands and feet”?

I’ll be as brief as possible.

Over the past 1.5 years I’ve seen Dr. Tylenol 3 times. There’s been no joint exam and my kids know more about this disease than this doc. Last time, new office policy required them to give me my first-ever-in-my-life HAQ (it was a RAPID), which they admitted is only kept in case it’s needed for insurance. Last year, Dr. Tylenol also injected my shoulder with cortisone based on what Dr. Smart put in my chart (bursitis). I was prescribed a new DMARD and told to return for follow up.

The staff called to change the follow up appointment and ended up scheduling me with a new doctor, an old friend of Dr. Tylenol, who was “brought into the practice” by Dr. Tylenol. That appointment was yesterday and we met Dr. Shrug.

Shrug is an apt name since s/he refused to look at my neck, knees, or the vascular situation that’s been on my leg the last year. I’d changed into shorts to be sure everything could be seen. I mentioned my knees a few times and pointed and asked to have them looked at, saying they are swollen right now in the back. Shrug. All ignored and not in the doctor’s notes.

Dr. Shrug did not do a joint exam, but commented skeptically while pulling on shoulders and right elbow quite a bit, tugging on right foot, glancing at left hand, and repeatedly twisting right wrist up and down with thumbs dug into the top. Dr. Shrug said several things that we know are inaccurate and it was easy to believe s/he had gone to school with Dr. Tylenol. Examples of what Dr. Shrug said:

  • I don’t see swelling so I don’t know what I’m treating. Get an MRI of the swelling, but wait until a swollen day to get it. The MRI people want your money, so they’ll be glad to see you on the same day if you can call them when you’re swollen.
  • I will only MRI one foot or hand because that is where the disease starts (I said my knees, shoulders, and neck are the worst and doc shrugged).
  • We know very little about this disease. But we know damage starts in the hands. It can be the feet, but mostly the hands.
  • X-rays only show damage after bone is completely eroded. But you’re so lucky you do not have any damage. Look on the bright side because your x-rays show you have no damage at all.
  • If I don’t see erosion on the MRI, I don’t see how we could take the risk to give you another toxic medication.
  • You’ve had so many drugs; if they don’t work, maybe it’s something else.
  • If there is no erosion on the MRI, maybe it’s just a soft tissue pain syndrome (I said my joints, not soft tissues, are twisting, stiff, weak, and painful, and doc shrugged).

I chose the right foot as the lucky dog for the MRI. Lots more is going on in my life and with my Rheum disease too. I’ll be okay. You’d think this would get easier. But it’s the same. The first tear fell to my check as I said, “Remember why we were so glad to find Dr. Smart?” (see video below).

One thought I had during the appointment yesterday: “If this weren’t Florida, we could record this. This should be recorded. I don’t want anyone to get this anymore instead of good care.”

Both of these docs are so young – it feels like the future is lost –– and the wrong people hold all the cards. But they don’t, KB reminded me: We hold the truth.

Related reading

Really awkward old video with critically important message:

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/

102 thoughts on “Inadequate & stupid? No, just a victim of someone’s training

  • April 18, 2013 at 5:28 am
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    This makes me so mad! How on earth are doctors who know nothing allowed to practice medicine? I would honestly lay a complaint at the Medical Council if my Rheumy ever tried this kind of crap on me.

    Petty as it might be, these doctors deserve to be educated – how about making the doctors in question a present – a lovely current Rheumatology textbook – mark the important pages with post-it notes for their convenience – maybe they’ll realise their “continuing professional education” is sorely lacking! grrrrr!!! 🙁

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    • April 18, 2013 at 2:36 pm
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      Diane,
      My first RA doctor was HORRIBLE and appeared to be only interested in the fact that I am “bow-legged” (as if I didn’t know that LOL). She ended up “firing” me – can you believe that! Thankfully, I only saw her 3 times, so nothing major lost. She was a nutcase. And I “DID” write and complain to the organization that is over physicians in Mississippi. They, in turn, contacted this “doctor” who replied that my mother and I had harassed and screamed at her receptionist and nurse – which is a complete lie and is completely absurd! I wrote this organization back, and never got another response! They COVER UP for their precious doctors. I have told everyone I talk to about RA NOT to go to this particular doctor. It is pitiful when we cannot get action taken against this type of supposed “doctor”. God help us all.

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    • May 7, 2013 at 5:55 am
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      Its unbelievable that doctors have so many different ways of expressing themselves. I told the doctor that my upper back is a killer….He said that is not RA. I said I was having nightmares that is not the RA. But, I said could it be the drugs. NO! with no explanation to me. He wrote in his notes that I refused treatment. I said WHAT? He had asked me if he could give me a shot in my knees putting something that looks like foam around my knees. I did not refuse treatment. I refused the shots as it was my first visit with him and I was scared to death of what I was facing. Do any of these doctors get it right? Does anyone know of a good RA in Medford or Grants Pass, Oregon?

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  • April 18, 2013 at 7:47 am
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    Everything you and Nancy C. said rings true. I often leave my rheumatologist’s office feeling like a total fraud. There is nothing worse than that moment when you realize your own physician thinks that you are histrionic or catastrophizing, because “your bloodwork looks good, so the pain you describe doesn’t make sense to me” or “there is no conspicuous swelling of your joints today, so the meds seem to be working great and you are in remission” or, “the symptoms you are describing aren’t caused by RA, so…..” (and she always trails off like that, I guess she doesn’t want to seem impolite by suggesting I am crazy).

    My favorite rheumatologist quote? “You should be grateful you don’t have anything serious.” I guess if it’s a condition that is not killing me right this second, I must accept all of the pain and limitations this disease is causing me and just shut up. (By the way, do our doctors really think we are incapable of putting things in perspective? I have borne witness to loved ones who slowly lost their battles with cancer. I would never try to equate my health problems with those who have cancer, or AIDS, or ALS. I know that others out there experience suffering that is much worse than my own, but does that completely delegitimize my experience, what I am going through? Apparently, my doctor feels that the answer is yes).

    So, I no longer tell my rheumatologist how I’m really doing or feeling, and guess what? She is much nicer to me now. I have figured it out — say as little as possible, and do what your told, and for god’s sake, be sure to have a smile plastered on your face when you walk into that exam room, as well as when you leave, and all will go well. At least from the doctor’s perspective.

    And what’s perhaps the saddest of all is that we all know some of our rheumatologist friends who are on social media will probably read this blog post, and all of our comments to this post, and once again lament the “negative” attitudes we all seem to have, and how we are scaring the newly-diagnosed, and that we shouldn’t give people the wrong idea of what it’s really like to be an RA patient. But, doctors, this is my experience. So I will not shut up. Your colleague who is treating me can shame me into not speaking up in the exam room, but I will speak up here so that others know they are not alone.

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  • April 18, 2013 at 8:12 am
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    This post truly makes me wonder what they teach in medical school, esp rheumatology! We have two rheumys in our city, both in the same group. I have one and have experienced the other…all I can say is I am thankful to have my dr as the other one sounds like Dr Tylenol and Dr Shrug…except she is Chinese and evidentially has not learned how to speak English and communicate well. My experience with her was with my mother for osteo issues…I could hardly understand her and when I asked questions, she never answered. I mentioned something about family history and said she does not have any joint issues other than a hip replacement and somehow I mentioned I have RD…well she LOOKED at me and said I did not have RD as I was too young, my mother didn’t have it and I didn’t look swollen…I smartly suggested she talk to my dr (again same practice)…and vowed I would never go to her EVER…

    Fast forward a couple months later, thru your site, someone asked about a rheumy in central VA (mine was no longer taking patients) and it ended up she had seen this quack and would not go back and now drives 1 1/2 hours to a rheumy at UVA…a very good friend of mine has issues (sister has RD, she suspects AS) but this quack just blows her off as her lab work shows nothing…as she dies in pain every day…What is wrong with these drs and the corporations that hire them? I got an online survey about my moms visit and I blasted them with our horrid appointment…

    Your post also makes me feel better about my rheumy and my GP…it took about a year to “educate” my rheumy that I was not stupid and questions I have I want answers to, or at least an investigation! He really went to bat for me to get the Orencia for me when my insurance said no..and since I have changed to a new GP who is a DO who practices intregrative medicine (I have to pay out of pocket since she is considered “alternative”) he is VERY interested in what she is doing for me and how its working. He seems to be open to something other than all these drugs. For this I am very grateful!

    We as warriors know how hard RD is, wish some of these drs did…it makes life so much easier when not having to fight with our health care providers! Thanks for stepping out and posting this Kelly! If it weren’t for the warrior sites,many of us would be lost…

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  • April 18, 2013 at 8:32 am
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    Thank you for writing this. I feel like when I talk about these problems to a Dr. that I am being a know it all!!! I get tired of having a dr look at me and be perplexed. Ex…why are you on MTX? It doesn’t work on adults!?!? I said well my hands feel better(gosh how they ached) and my child’s peeds rheumy said that it would start feeling better because MTX works better on extremities. She looked at me as if I was stupid. I’ve never had to go to bat for myself, always for my son but I was listened to…well after the 4 th Dr. So this is new to me. This Dr also told me that she only saw little old men with AS? I asked, then why does my child have Juvenile Spondyloarthritis. She says that’s not AS. Um, the only reason why they didn’t diagnose my kid as having Juvenile Ankylosing Spondy is because his inflammation was not seen at NIH. It was seen on X-ray prior to that but decided to hold off on dx until changes showed again. Dr says why I thought I had the same thing? Because I’m his Mom and I hurt in the same places as him….but both butt cheeks hurt a lot and she said I have probably fibro but because I’m pushing the AS she will give me an MRI. About a week later office calls me to tell me they want me to be on Humira cuz my SI joints had narrowing and were inflamed! Um…not going back. I’ll wait for NIH and then go to Jacksonville, Mayo. I have been doing research on my son for over 3 years and as you, both my kids know more about this disease. All I want is to be able to go to a dr and not be dismissed !!! Whew that felt good… I’m happy to have found your site
    Thanks

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  • April 18, 2013 at 8:36 am
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    Kelly, you are in a position where you have spoken to good docs, albeit in other cities. Can’t you get a referral of a normal person from them? Or someone on your board could recommend a new doc for you?

    Also, aren’t you worried they will read your comments? Dr Tylenol and Dr Shrug are pretty insulting. It’s one thing to insult a doctor you fired, quite another to do it to one you still see! Take care…

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    • April 18, 2013 at 9:14 am
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      Hi Karen, I think that kind of fear to tell what really happened is what keeps the status quo from changing, like the story in the post about the neurologist who was so mean/crude to an elderly stroke patient. As I wrote, it was difficult for me to find the courage, mainly because I’d rather put a positive face on it – like most of us would. But the many dear people who write me with the very same issues, including families with child-patients, is what gives me the courage to go ahead and tell the truth. Can I just ignore Nancy’s experience and the many others like her, when I have the ability to speak for them?
      It’s a personal opinion, I guess, but the names I chose seem very mild and humorous and based on the lists of quoted statements from them. They don’t seem like insults to me.

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      • April 18, 2013 at 9:48 am
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        I guess I meant the names were mildly insulting! But also, have you told them directly how you feel? They might appreciate the info first-hand. In have fired many doctors in my day and always tell them why. I refuse to financially support poor or indifferent care. My doctors know exactly how I feel about their care and professionalism. Different strokes.

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        • April 18, 2013 at 10:02 am
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          thanks for your reply Karen. I agree the way the doctor was trained is worth a complaint & it’s something we’ve discussed at length. There is always a lot more than can be shared in a single blog post, but I decided to address the core problem: that there are doctors who are trained with such faulty information, and it affects patients’ care.
          All of my other doctors & my kids doc are supportive of RPF & the work at RAW, but we never tell a rheum doc how we know they are wrong – once-ever I asked a question, based on my knowledge- actually, I asked permission to ask a question, and I was fired (Dr Smart – the link is in the post). On the one hand we could say, “who wants a doctor that would do that?” But on the other hand, every other rheum doc I’ve met (as a patient) has been as poorly trained as Dr. Tylenol – or worse, dismissive. I’d still give a lot to have Dr. Smart back even though it was not perfect.

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  • April 18, 2013 at 8:54 am
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    Inadequate and stupid? I don’t think so!!! RA patients know how they feel! I would love to meet a rheumatologist that has RA and talk with them about how they feel!! I connect every ache and pain to my RA-it just makes sense! I am also experiencing peripheral neuropathy in both feet-I call it “my new best friend”! They go with me where ever I go, what ever I’m doing-they are there! My doc doesn’t seem to think it’s connected-I did some research and found that my meds (Arava) could be contributing to it. What fun!! Do I stop the Arava? So many decisions! Hang in there everyone!!!

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  • April 18, 2013 at 9:55 am
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    Not long after I was dx I was confiding to a doctor how scared I was,as a nurse I had the seen the end result of severe RA and was terrified of ending up there. I got a complete slapping down and he told me most definitely that with the new drugs NO-ONE ends up with deformities or disability, so there is no worst case scenario with RA anymore. Completely treatable. For everyone. Not only was I humiliated at being spoken to like a particularly stupid child, but I was even more scared than before at the thought that a medical professional was so absolutely clueless about the disease, and my future now depended on people like him.

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  • April 18, 2013 at 10:17 am
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    Mawahhhhhhhhhhh!!…….Scary Consultants/Doctors…I hope the UK ones offer a better service….
    I can’t believe you are given such poorly trained Quacks!!
    Good job KELLY is trying to lead the way ..God bless her…x

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  • April 18, 2013 at 10:27 am
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    Several of my friends and I read your blog everyday. You are our HERO! We go through the same things and have the same problems with our doctors. Through you we know we are not crazy and that these symptoms are real. Thank you!

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    • April 18, 2013 at 10:35 am
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      thank you Vickie. That’s very sweet. I’m just a fellow struggler – and the only good that I think can come from such a crushing experience as I just had again is to try to use it to be part of the solution. I can tell my story – it’s what happened to me. So others know they aren’t alone. And that someone believes them.
      If I never went through it, maybe I wouldn’t believe it either.

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  • April 18, 2013 at 10:47 am
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    When I get home from a Drs office…I tell my husband, if hes not with me and we discuss what has gone on at the appt.. This can be comical, irritating and down right confusing. I think the hardest part of Arthritis is that there are so many variables; Each person is different but there are similarities with each type of disease and we cant be bunched together… but unfortunately if you dont fit into that text book that they used in school and if Drs are not truly 100% into their job then your only getting a portion of what that Dr knows. We live this disease every day..so everyday we think about it even when we have a good day. Most drs do their job and they can go home. They can put it aside. We dont have that option and our knowledge can be an incredible tool for them. What I dont understand is why did you choose to be a Rheumatologist? A Rheumy needs to be patient, understanding and really listen to a patient. I try so hard to be a patient that listens and I cross my fingers that this will be the Dr that knows something. I only raise my questions when I have been told something different or when they tell me how I feel or my child is feeling and it is not correct.I listen to what they say and expect to be listened to as well but they really dont think you know much and question where you got the information.
    There are good doctors out there but there far and few. It took 4 doctors to find a doctor that was able to diagnose my 12 year old. Im on my 2nd dr…Mt first rheumy visit, the nurse told me the Dr wasnt going to give me 90 vials of MTX when i asked for a 90 day supply.HAHAHA The 2nd one just kept contradicting herself.
    This is not an in your box illness. That is why there is no cure. My son has one more drug to try…Humira and thats it. Nothing in the works. Scary. I was told by a peeds gastro dr to stop throwing medicine at it because it was probably as good as it was going to get and thats what he would do for his child (who doesnt have arthritis). I dont ever want to hear that and until your in my shoes or my childs dont give me that line. I was told by a psychologist friend once that when a doctor cant help you or fix the problem they tend to take a step back and sadly thats whats happening with my son now. The Dr doesnt have an answer anymore. The meds just stop working for him. I just wish that he would tell me this. I have built a re pore with this dr. I would rather you tell me you dont know then give me a BS answer or avoid.

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    • April 18, 2013 at 11:09 am
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      Oh…One more thing…My son and myself both have perfect labs. ESR is low, NO RF and ANA Neg. His first dr said this and what a shame that it took 6 months for this child to be diagnosed and put on medication. ER and Rheumy Drs thought he was so cute as this poor kid was having a hard time walking and moving. Neither of us swell but a tad bit and there is no redness or warmth…just stiffness and pain. Hes got old man knees and enthesitis doesnt show up on exam except that they ache…legs mostly for son..me arms, shoulders…the one thing we do have in common is Achilles and heel pain. And tell tale is lowback girdle pain
      I tell this because we are not text book material. We do not look like or read like what they say we should look like (except for Achilles and low back) and hopefully there will be new criteria for Drs to correctly diagnose.
      Thanks Kelly for bringing this up. Its a great feeling to know that your not the only one shaking your head and questioning yourself

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  • April 18, 2013 at 10:51 am
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    I have been reading this site for months. It has great information and I refer to the site when I get prescribed new drugs. I have been going to this dr. on and off since 2005. She has been great, she has always been very helpful and listens to me. She is not on my insurance so every time I go its at least $150 to $170 per visit. Which is ok since I feel like I am receiving help. I had an appointment this week and something very strange happened. I was prescribed plaquenil for my “mild” RA (it doesn’t feel mild to me but anyway) also something for pain and told I have sjogren’s also. The plaquenil has been helping my fatique but I still suffer with pain, extreme stiffness, and alot of swelling. So this time she would’nt even look at my hands or anything I was complaining about she told me that I may not be that sick. And since my hands are not swollen more than an hour when I get up I must be ok. What??? Then the kicker is that when I asked for more pain pills, she said I should take Aleve. Excuse me??? If I could take Aleve and all this would go away why have I been coming here for almost 8 years and spend this money? I felt so bad when I left the appointment. I wish there was a doctor that would understand what RA patients truly go through. I work everyday and still have to function as alot of us do. I pray everyday that this disease will someday have a cure and we don’t have to feel we are complaining all the time. Thank you Kelly for this site, it helps me get through.

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  • April 18, 2013 at 10:56 am
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    I had stopped reading much about my Rhuematic disease because I’m so discouraged. I’ve been thinking if I pretend it’s not happening, it will go away. That’s not working too well. I read this email today and it reminded me that I’m not the only one! As much as this sucks for other people, I’m not the only one going through this. I’ve had extreme fatigue and a lot of joint pain since November, but I’ve not gone to a Rheumatologist because I don’t trust the one I’ve seen the past 2 times and I don’t know who to turn to now.
    Thank you for sharing these stories, Kelly. This is truly my life and I don’t know how to change it. For now I live in pain and spend much of the time in bed…not the life I want.

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    • April 18, 2013 at 11:46 am
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      Hi Rhonda, I actually have a lot of respect for the ostrich strategy and I’ve used it many times. Unfortunately if one has unrelenting disease activity, it’s hard to keep with rheum disease for too long – see this recent post, Don’t Give Up. It’s jsut so debilitating, we want to just “be ok” but we are not.
      There is value in our knowing we are not alone. That alone empowers us. And to know that some eventually find trustworthy rheumatologists who are able to help people find answers or treatments that eventually work – gives us all hope that we will someday too. That’s why I posted my old video with this post.

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  • April 18, 2013 at 11:16 am
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    I know many of us have shared our stories that is nothing short of a “crisis in rheumatology care from the patient perspective”. I’m interested in thinking about what positive steps we can take or are being taken to address this.

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    • April 18, 2013 at 11:41 am
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      Sally, this is what I’ve spent the last couple years of my life working on. It’s a monumental task, but we’re addressing it on several levels. A full response would be a whole blog post – maybe I can do that tonight after the RPF board meeting.

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  • April 18, 2013 at 11:23 am
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    I am at work, but when I get home, I will have a good, long cry. It is obscene and utterly maddening that “we” are treated this way by supposedly intelligent “rheumatologists”. I also started out with Dr. DoNothing. I am bow-legged, and she seemed completely mesmerized by this fact. She even had to point that them out to me – as if I didn’t know already – duh. She would stand and just stare at my legs. Really???? Have mercy. Anyway, she started me on methotrexate and plaquenil and never did a chest x-ray nor a TB skin test before starting to treat me. Long story short, she ended up “firing” me, claiming that my mother and I had called and harassed her nurse and her receptionist. What???? Anyway, that was a blessing, because my next RA doctor is my current RA doctor, Dr. Awesome.
    The first day I saw him, he literally had me stand up (I was wearing a maxi dress) and he felt of every joint he possibly could (without being inappropriate LOL) from my toes to my neck. He had me sit down and pulled my legs up onto his lap to further evaluate my legs and feet. I have never in my life had such a thorough evaluation by ANY doctor. He did everything right, and I was soon started on Enbrel which has saved my life. I still have aches and pains, but Dr. Awesome and his Awesome Staff are part of my family now and I KNOW how very blessed I am.
    It is maddening that there are doctors out there who REFUSE to LISTEN to their patients. My local arthritis foundation recently referred another RA patient to me just to have someone to talk to. This precious lady I’ll call Jean is in such a worse condition than I was when I first started this lovely process of being diagnosed with RA. She sent me pictures of her ankles, legs, elbows, etc. Dear God – worse than I had imagined. Her first “rheumatologist” simply put her on plaquenil and methotrexate – that was in January 2013. She is worse now. Thankfully, she saw a new RA doc this past Friday (Dr. Awesome knows this RA doctor and gave his “thumbs up” for him!) and he gave her a thorough evaluation, and I believe he will be able to help her tremendously. She has been in so much pain and is barely able to walk.
    To me, one of the most difficult parts of dealing with RA is finding a truly GOOD rheumatologist. I am praying for all of my fellow RAers and others who suffer any ailment to find a truly GOOD doctor. May God guide you to your own “Dr. Awesome” because YOU deserve it, my friends.

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  • April 18, 2013 at 11:33 am
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    I’ll bet if we did a poll, all of us have encountered this with our doctors. I feel so depressed when I have to go to the Dr. and when I get home. What is it with them? I know that there are folks out there that are trying to push the “pain med” envelope, but for the life of me I wish that they would just look at my past records. Previous to this hell I currently live in, I usually only went to the Dr. once a year for my annual check up…then all hell broke loose. I have been in such pain, nearly daily and like everyone else I feel like such a hypochondriac. If they would look then they would know I got by, I dealt with my aches and pains…now I can not and look to them to help…that’s what I thought they were suppose to do, help those…hippocratic oath ring a bell??? Ohhhh after having said that I looked it up…The Hippocratic Oath is one of the oldest binding documents in history. Written in antiquity, its principles are held sacred by doctors to this day: treat the sick to the best of one’s ability, preserve patient privacy, teach the secrets of medicine to the next generation, and so on…my mistake I thought Rheumatologists were suppose to receive additional training in their field (see best of one’s ability). I just get so frustrated anymore when I go to the Dr. I just say things are fine, I am great. When I go back in dragging my leg, tears flowing, swollen and bright red I guess they will believe me????? but I doubt it.

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  • April 18, 2013 at 11:50 am
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    I have had a really rough week and reading this brought tears to my eyes because I just didn’t feel so alone anymore. I had an appointment with my rheumy this week and I too brought along my list of questions. The first three questions I asked were, “what about these stabbing pains?”, “Why do the tendons in my feet and toes contract so badly sometimes that I cannot walk – I have to crawl on my hands and knees?” and “my hips hurt so much that sometimes I cannot walk or even function…”

    So, Nancy C. I totally get where you are coming from. I have all that too. The one blessing I have is that my rheumy is exceptionally kind; and though I many feel like a freak for having all these non-hands and non-feet symptoms he never treats me like one. Keep fighting the good fight all – hopefully one day we’ll all get to be pain free.

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    • April 18, 2013 at 12:13 pm
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      you are not a freak; you are probably typical Eva. I’m so glad you have a kind dr and thanks for posting to encourage others.

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    • April 18, 2013 at 1:48 pm
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      There should be a doctor hookup site like eharmony. Seriously. 🙂 I want to meet your doctor, are you open to him seeing other people? ^_~

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      • April 18, 2013 at 4:47 pm
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        Now there’s a project : )))

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  • April 18, 2013 at 12:54 pm
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    Wow. If you dont have a good doctor, what hope is there for the rest of us? I sometimes think, I wish Kelly would share her doctor’s real name so I could see them too, thinking Dr Tylenol a person of the past. Surely you with all your knowledge and persistence MUST have a good doctor by now? But maybe the truth is there just arent any out there. Maybe we all have it wrong, how could so many be blinded to so much research, are all the symptoms fibromyalgia instead of worsening RA? How can anyone navigate to anything better when even *you* cant do it?

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    • April 18, 2013 at 1:08 pm
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      there’s so much there in your comment. I’m on my way out the door to pick up my son, but 2 things briefly:
      1 did you watch the video (I did have “a good dr by now”)? or read my other replies to comemnts?
      2-One point of the post is that it’s not our fault – I don’t think it’s our fault about the luck of the draw.

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      • April 18, 2013 at 1:21 pm
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        I dont think its our fault at all, its just… tragic. It fills me with despair the idea that its so hard for so many of us. I’d love to hear from some of us who actually found that Dr Right. Its very easy to stop looking and just make the best of what you have to work with.

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        • April 18, 2013 at 1:40 pm
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          From my phone
          I agree. That’s ewhats in the video. Plz watch and see.

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  • April 18, 2013 at 1:03 pm
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    Nancy-
    I think we have all been in the exact same place. I know I cried too when I read what Nancy wrote. My regular dr says I am so extremely positive and probably in the most pain of all her Ra patients. My rheumy listens, but makes me feel that no one has any of this happening to them. My big problem is in my lower neck, back sacrum, and hips this past week, all places he claims aren’t affected by RA. So now he is claiming that I may have fibromyalgia as well. So on top of the Humira and methotrexiate, they want me to take lyrica too. When do they just except that maybe the RA meds aren’t working and we need to try something else.
    He says that having both is common especially when the RA has gone undiagnosed for a very long time, like in my place. Both Drs I have seen feel it is likely I had JRA that has lead to a knee replacement at 30. If there is anyone else that is dealing with this I would love to hear if this is working or not. I am thinking of getting a Rheumy with some more ideas. Thanks!

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  • April 18, 2013 at 1:14 pm
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    I just saw my rheumy Tuesday. He asked if I had swelling anywhere. No, I rarely do. I told him my hip was killing me though and he cared less. Don’t think he even wrote it down. Said labs mostly unremarkable, maybe slight neutropenia. By the time I drove the 40minutes to get home, I could barely walk. It hurt all night and most of yesterday, but hey, it wasn’t swollen.

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  • April 18, 2013 at 4:55 pm
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    I feel that in some ways I can really relate to this post. It took a long time for me and my Rheumy to “click”. I grew so furstrated with him, for the longest time he would not give me a diagnosis. Then as medications stopped working he moved me up the ladder of meds and I am thankfully controlled fairly well with methotrexate and plaquenil. But he doesn’t believe me when I tell him where and how badly I hurt. He makes comments of “well it isn’t red or swollen” but then he will then add on “but if you say you hurt I guess you hurt” (probably because by then my face is red from anger). It just breaks my heart not to be believed. I don’t lie, I don’t exaggerate. I don’t take anything more than ibuprofen for pain because I feel like he thinks I am a drug seeker. My mom wants me to change doctors but there are so very few in this area. Plus my current Rheumy may not believe me but he IS treating me although not aggressively. I am afraid if I go to someone new, they will tell me I don’t have RA and take me off my meds. I can’t and won’t go back to that level of disability again. So I feel kind of trapped.

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    • April 18, 2013 at 5:09 pm
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      Deirdre,

      If you have insurance, does your insurance cover a second opinion? If your mom thinks you should look at other options, there is no harm in getting a review of your treatment. You just might find somebody better. You will have lost nothing if you get a second opinion you don’t like then stay with your current rheumy.

      It is easy to have your primary refer you to another rheumatologist and send along the reports from your rheumy (if they have them). The tricky part is finding someone worth seeing : ))

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  • April 18, 2013 at 5:54 pm
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    Hi Kelly! My first Rheumatologist acted like I was crazy and sent me to a foot doctor…6 months later I was diagnosed with Sarcoidosis then Rheumatoid Arthritis. I pray that all who do not trust your doctor are able to find one that you trust and they need to trust us as well! My current Doctor works WITH me, gives me options for plan A and plan B and our visits are never less than an hour. The wait time is brutal because she spends time with her patients, but she is so worth it!

    I notice no one adds the name of their doctors so I am following suit 🙂 Do you have a specific link where we can recommend or not recommend a doctor? I am looking for a pulmonologist in Atlanta!

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    • April 18, 2013 at 6:03 pm
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      Yes, there are a couple of posts on the site where people have left names of good doctors. Feel free to leave names of good doctors here or send to me by email. I sometimes get emails requesting names & while it’s very hard to reply to all of them, I have many times. The RPF is also having volunteers do research to create a list that will be on that site for members or people who write to request it. It’s a huge project but will be worthwhile.
      I did notice a commenter yesterday (Nancy) who is looking for someone in Atlanta in case you want to reply to her. It’s on the tendons post – this should take you there – https://www.rawarrior.com/does-rheumatoid-arthritis-affect-tendons/comment-page-1/?show=comments#comment-555125

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  • April 18, 2013 at 6:40 pm
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    Good post Kelly, thanks for having the courage to speak up even when it’s controversial. I pray that you will eventually find a good doc. My heart goes out to everyone here, please don’t give up! I also agree that we need to be part of the solution which will take some give on our part. Find a new doc that is more open and caring or learn to work it out with the one you have, that can be done but it takes time, patience and some good strategies. Do you have a post that would help with this Kelly? There is only one rheum doc in my town and my insurance does not allow me other choices. I had to learn to work with the one I have. We don’t always agree so we agree to disagree on some points. He has come to respect me in that I’m an educated patient and therefore listens to my concerns and considers them. I in turn respect him and his expertise and listen to him and consider what he recommends. It took 2 yrs for us to build this relationship, it was not always easy but quite worthwhile. I too was diagnosed with FMS and many times had RA pain dismissed as this. In the beginning I was adamant that I didn’t have it, this feirce unbending opinion did not help our relationship. I have come to the realization that I do have FMS, I can’t blame facial muscle pain on RA afterall. So my acceptance of the FMS diagnosis was my give to the doctor and he reciprocated with giving in turn such as believing me when I say the pain is RA. He does not routinely do a joint count, but I have learned to ask him to examine joints that are bothering me. He does so carefully now and does not dismiss me, even if he doesn’t see swelling. I’m sure some docs are impossible and not open to any give and take in the doctor patient relationship, but some may be more pliable and giving than first meets the eye. I did pray and trust that God would help our relationship and he delivered.

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  • April 18, 2013 at 7:25 pm
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    These stories, along with mine, make me feel so sad. A good doctor is hard to find, and something to be cherished when you do. I am lucky that I at least have a good family doc. She is a D.O. and maybe that’s why she is so attentive and thorough with me. My rheumy is horrible. I always walk out of there feeling stupid and inadequate. He doesn’t see swelling so he thinks I’m fine. If I am fine, why did I have to leave work (in a law office) and come home for the rest of the day today? I live in Upper Michigan and we are having the coldest, wettest “spring” I can remember. Winter just won’t let go and my joints are just screaming. My family doc just started me on cymbalta (low dose) and I thought I was starting to feel better, but you wouldn’t know it by today. My hips, wrists and shoulders are sore and I have a fever. I think I am going to cancel my upcoming appointment with my rheumy and just continue seeing my family dr. She has done more for me in one visit than 3 to my rheumy. I guess you just have to try to hang in there and trust that you will find a good doctor eventually. It is hard, especially if you live in a rural area that doesn’t have many specialists (me!). I like the idea of having a site to go to where patients recommend docs. Sort of like an “Angie’s List” for doctors! I will continue to pray for all of us, and hope that it gets better 🙂

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  • April 18, 2013 at 9:55 pm
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    I just went through a battery of tests at the gyno, and the mamogram/breast drs. All I thought throughout the whole thing was this “Why o Why can’t my Rheumatologist experience be like this??”

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    • April 18, 2013 at 10:28 pm
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      good question. I think one obvious reason is the obgyn field knows so much more about various disorders/disease processes & how to help (tests & treatments).
      I like the question especially because they have this one thing in common: patients are female & most doctors have been male. But progress has still been made in this field because it has been studied seriously for a number of years.

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  • April 18, 2013 at 11:03 pm
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    These stories are so outrageous! Thank goodness there are a few dr Awesomes around. You’re blessed

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  • April 18, 2013 at 11:11 pm
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    I didn’t read all the comments today but I will have to agree with the ones I did read and can relate I am on my forth rheummy in less the two years including one I left and came back then left again.My latest I wanted 6 months for my first appointment.When I discussed the pain issue with him he said he would change my infusion from Remicade to Actemera after three months of complaining about having pain.he double the infusion and sends me to a pain management Dr because he does not think the pain is that bad
    .The pain management Dr asked why am seeing him I told my rheummy does not think I have pain I am looking for number 5 What do we have to do to find a good Dr that will listen.one more thing I also went to a teaching hospital in Chicago The Professor of Rheumatoligy told me I was in remission my pain was something else.I am 66 years old would like to have even a few months without pain Thank You ,Kelly for giving us a place to shout

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    • April 18, 2013 at 11:48 pm
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      you’re welcome Bob. Hang in there, you’ll find something/ someone that helps!

      It’s so sad that even at a teaching hospital, that’s what you encountered. I think with rheum disease, this website is the first time we’ve had so many patients in one place who can talk to each other and compare notes. The past 4 yrs, it’s been one big surprise after another for me & the rest of us to find out that WE ARE NOT ALONE and we are not the only ones.

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  • April 18, 2013 at 11:39 pm
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    It’s hard to believe that Dr Shrug can know so little and not respond to symptoms. What happened to treat to target?
    When did insurance get into the business of treating patients?

    It’s shocking that your kids know more about RA than the doctors you have been seeing. From what I read the Sed rate is not really a reliable indicator. Granted I was diagnosed on sed rate 30 years ago but there are better ways now.

    I just spoke to a person today whose hands just looked wonderful – but she is in terrible shape with lung involvement, bone edema, pain and she’s on Orencia as well as having tapered down to 20 mg of prednisone now. She had a Stevens Johnson reaction to the last TNF. And she is only 29 and despairs of ever having a normal life.

    Your guy would have said she is fine I bet. There have got to be some better Docs in Florida

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    • April 19, 2013 at 12:17 am
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      this doc like previous docs seemed hung up on negative blood tests – so I dug out my folder last night to see – in 2006 and 2010 a high Rf and all 7 yrs a consistently high ccp – >250. I just wanted to look at it to be sure I wasn’t seronegative since apparently there was a neg. Rf in Dec & the were hung up on that & a mostly normal sed / CRP, though because that’s what they were taught. We have to reach them in school. Maybe now we can through cme.
      A doc like Shrug or Tylenol must not read journals very often as you do. They need some kind of continuing ed that can break through their poor training to salvage their careers. These 2 are young & trained in the same place. We’ve definitely identified that school as a problem. But it seems systemic – I think that much of the generation – the 60’s thru 80 was wasted on psych non-sense about RA instead of investigating the disease properly as they were doing with cancer and diabetes, the way we did with AIDS when it happened. So, my point is those who are now teaching med school were steeped in that milieu & not aware of the work they do at Mayo or of what we learn in this community of the actual experience of the disease. They really believe the inaccurate things they say to the many people on this page and on this site.

      I’m so glad that younger person has you. You’re such a wealth of knowledge and support.

      You would’ve been proud of my KB this week: when the technician left the room after checking me in with several ignorant comments about RA that we ignored, KB said, “I could fix her in only 20 minutes. I could train her to do this job right.” Why is no one else training that young woman? Because they don’t even realize there’s a problem.

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    • April 19, 2013 at 3:16 pm
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      Maybe you could talk the ACR into doing some remedial work on some of these Drs. Give them a list and suggest that they do a special mail out to these guys who are hung up on this non-standard and unelightened treatment. Do they even go to ACR conferences?

      It’s like they never heard of either Tight Control or Treat To Target. The whole system could save money if more doctors worked like that.

      I asked my own Dr once why there was so much long term use of prednisone in RA. He only uses it to tide people over waiting for a bigger gun to work or to help out with energy if you’re going to Europe. Also if or while they are off meds for some reason.

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      • April 19, 2013 at 4:12 pm
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        Many doctors do not go to meetings or are not even members. It is the same as with mechanics – there are good & bad ones. But with a car, they do what is asked or we don’t pay, so there’s a more objective measure of success.
        I don’t know if they’re reading in real time but I assure you I cannot “talk the ACR into” anything. They exist as a professional organization to advance the profession of rheumatology https://www.rheumatology.org/about/mission.asp

        The ACR cannot, as a professional organization, keep tabs on all it’s members or exercise any control over them. The elderly doctor who sexually assaulted me 2 yrs ago in front of both of my grown daughters is a member of the ACR. https://www.rawarrior.com/the-appointment-with-doctor-perv/

        All that said, we are working on several ways to improve care. It seems a first step is for patients to know 1) they aren’t alone if they have inadequate care; and 2) there are good doctors so they should not give up looking.

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        • April 19, 2013 at 4:23 pm
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          As a member of several professional associations, I can assure you that consumers of services have TREMENDOUS power to impact practice.

          Think of strides that have been made in special education and service provision in the schools. Laws have been changed, a standard of practice now exists, and services have been implemented. Think of discrimination based on any identifiable characteristic and the progress that has been made.

          We have tremendous power to change the practice of rheumatology. It can be done collaboratively and with great respect for everyone involved.

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  • April 19, 2013 at 12:08 am
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    This post could not have come at a better time. I just got home from my appointment with my rheumy and walked out of her office thinking like I always do, “now that was a waste of time.” Here’s how my visit went, doc walks in, hi, so what’s new? I run down my list and tell her I believe this disease has progressed in the last three years since I’ve been seeing her and she says, just think what it would be like if you weren’t on Plaquenil. I asked her about methotrexate and got no response. She was too busy tapping away on her laptop. I finally stopped talking and jokingly asked her if she was playing a game on that thing. I got a smirk. Okay, back to the visit. I mentioned my hips and spine have been very painful and, here it comes….”that is not related to your RA.” Still not making eye contact with me she continues looking and tapping away on her laptop. I figured by now she must be a) reading a book, b) having a helluva good score playing Angry Birds, or c) emailing a friend. Now comes the exam, she looks at the swollen two joints on my right hand, squeezes my elbows, knees, and ankles, listens to my heart and lungs and says, ah, you’ve got a little swelling in that right hand. Time to put you on a little cocktail which consists of prednisone with Naproxsen as a chaser. See you in six weeks. My question is, when you get a flareup, is this the norm, the prednisone and Naproxsen? Oh, I did tell her the last time she put me on prednisone, I turned into the Wicked Witch of the West and she said, yeah it does that to everybody. Just cut back on it if you get too nuts!!! I’m sorry their are so many of us that put their faith and trust in these “professionals” and end up questioning or having to defend ourselves for what we are going through. Thanks Kelly for giving us a voice. And thank you my RD friends for sharing your experiences.

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    • April 19, 2013 at 12:29 am
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      Dear Pat,
      I’m sorry about your hand. Three years is a long time to stay on the same med & be progressing. Have you pressed her about why no methotrexate? What does she say when you bring up treating more aggressively?
      I think with the prednisone remark, I’d be tempted to ask her, “Are you willing to take it with me then?” But I know that would be a bad idea!
      But to answer your question, there is not a norm for treatment. There are guidelines, but they are not followed. There is a very wide range of how they treat. For example, the Dr. Shrug in this post told me, “I don’t believe in prednisone.” Both of the 2 rheum docs I had for 3 yrs each were the same way – very “anti-prednisone.” But many rheum docs, like yours prescribe it to try to get a flare to stop. It does work for many people as you can see people post all the time. Here’s one who posted tonight: https://www.rawarrior.com/prednisone-versus-prednisolone-the-same-for-everyone/comment-page-2/?show=comments#comment-556459

      Reply
  • April 19, 2013 at 12:22 am
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    I think any of us with RA have all been through this experience of ignorance. The rheumy’s are brainwashed some just in their quest for drug company’s bucks or rewards of holidays etc. but some out of just plain ignorance and them not listening to patients who they consider are stupid and do not know what they are talking about.

    I go to rheumy’s at a large teaching hospital and they are all young ones starting their careers.

    What I suggest is stand up to them, tell them they are WRONG and where possible why.

    I even told mine recently …you need to listen more to your patients rather than the drug companies. I am yet to see a pharma sales rep. with rheumatoid arthritis !

    RA does get to your large joints and the spine as it has done to mine.

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  • April 19, 2013 at 3:02 am
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    My rheumy is a DO.
    Terrible bed side manners.
    If you complain to him about the R.A. pain he whats to give you several shots of cortizone.
    I believe he does that just to shut you up.
    When you leave he gives you pain meds.
    I can only sleep about three nights a week.
    Too much pain.
    Thank You

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    • April 19, 2013 at 8:34 am
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      They are all so different. You can see many other patients here whose rheumy will not give them pain meds under any circumstances.
      Also, it’s funny you mention injections. I asked dr Shrug about injections & was told “I do not like injections either” (does not “believe in steroids”).

      Robert, if he has a terrible bedside manner and he won’t treat you properly, can you find another one? I don’t mean to imply it’s easy; I know it’s not, but hopefully worth it.

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      • April 19, 2013 at 9:51 am
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        There are very few in my area.
        He is supost to be one of the best?

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        • April 19, 2013 at 10:31 am
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          I hear you. Doesn’t mean anything except that they have established a good reputation. “Doc Space Heater” who threw a space heater against the wall and literally yelled in my face with my back against the wall (not to mention saying several things that we know are wrong) is considered one of the best in that city too.

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  • April 19, 2013 at 9:42 am
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    Kelly, reading about KB fixing the technician…I have said that so many times. Even the infusion nurses dont exactly know what Remicade does. We laughed because one infusion nurse told us that 2 tylenols were too much for Bruce..and 500mg of Remicade every 3 weeks isnt? Bruce just deals with pain and this saddens me. His Remicade has probably stopped working. Its been down hill for him since October and he woke up this morning walking like a tin man (had a good cry in the shower). He doesnt build antibodies his body just gets used to it. What baffles me is that every person working with these drugs and working with Rheumatologists are not but should be schooled on what they are giving out and all the different ways Arthritis shows itself. I was told that I needed HUMIRA over the phone. I was really in shock to be told over the phone and the Dr out of the country but the nurse couldnt tell me my MRI results except that my SIs are inflamed. Could she read the report to me? NO but lets get you started on Humira right away. I know these drugs, what about a new person who doesnt, does what the Dr says and really isnt educated. Yes you need it but educate and they cant because nurses dont know. I told the nurse to hold off on the Humira. I wanted to see if a Gluten free/whole foods diet would work. It had been 23 days and i felt my recovery time was better after sitting and standing. Sadly its not working. Its been 40 days 100% gluten free. Ive lost weight and feel better…but I still hurt. So its Humira for me. I have Degenerative Hand Disease and the MTX really has helped but the dr said it wouldnt..Yes it doesnt work on SPA/AS but what they are finding out is that everyone is different. They need to listen carefully because they will miss something. I would like just once to have drs agree and say the same thing. I finally found one GI peeds dr for my son who was so thorough, took his time and explained everything, even gave me a personal number to call if Bruce had a UC flare. This was important, last year Bruce flared so bad that they had scheduled him for a Colectomy and this Dr knew the severity to keep his colon. I am thankful that I do not have to worry about a GI Dr for Bruce. Its one thing I can cross off.

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  • April 19, 2013 at 9:58 am
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    I am not settling for poor rheumatology treatment and appreciate the encouragement from other rawarrior’s who share their experience. It means so much to have the support of others here.

    My rheumatologist recently wrote in his report that goes to several of my doctors that “there is very little in the way of objective findings”. He just talks about my “rheumatic symptoms”, which can be interpreted that most of what I’m complaining about is in my head since there isn’t much physical evidence. This statement is in spite of him writing in the same report that on limited exam I had 2 swollen joints (fingers) and tender joints across both hands. I have positive RF and CCP. On ultrasound less than a month before the visit I had 10 erosions, 6 areas of inflammation of joints, and 3 effusions. I can barely walk and cannot work. He talks later in the report about the need for aggressive treatment for my rheumatoid arthritis. Over time, I’ve had some swollen joints or no swollen joints. I’ve always had tender joints and problems with stiffness and walking.

    It is beyond belief to me that this rheumatologist can’t just say I have severe and aggressive RA. It’s like he’s made up his mind and regardless of irrefutable evidence to the contrary, he will stick with his impression. He is also incredibly inconsistent in what he’s saying because he talks about the need for aggressive treatment. I don’t understand it.

    The wait time to see another rheumatologist here is months. There is an old-boys network, also. Two rheumatologists said they wouldn’t see me for a second opinion because the one I’m seeing now is very good. My primary has to refer me so I feel like I have to be careful with how many referrals I ask for.

    Despite these barriers, I was able to get referred to a new rheumatologist and will see him next month. I have also looked at traveling to the city about 100 miles from here. I have the names of two excellent rheumatologists. Because of my insurance, I would have to pay out of pocket. Their fees just for the office visit are about $180-$250.

    We cannot give up. I will not give up !!!! All of us deserve the very best rheumatology care and to be treated with respect. I know this disease is progressive and other medical complications occur. I cannot and will not continue with a rheumatologist I cannot trust to take care of me.

    I hope everyone considering getting better care will continue to look for the ATeam-type of rheumatologist. We know good rheumatologists are out there. We’re worth it !!

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  • April 19, 2013 at 10:26 am
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    32 replies so far, with comments on many. NOT ONE says, “Kelly, you’re crazy. The world is full of fabulous rheumys!” Seems like the people who do have a good doc went through several bad ones to get there. How can this be?

    We read that the current standard of care is early and aggressive treatment. The American College of Rheumatology’s own website says that only about 65% of RA patients will eventually- not immediately, not always- show a + anti-CCP, with similar numbers for RF. If the ACR’s own members don’t incorporate this into practice we have a problem. My last bad experience was with the head of the rheumatology department at a major university. Tell me again what he is teaching his students?

    We know our own bodies. We know when something is really wrong. The cognitive dissonance from being told we have no inflammation, that we are just plain wrong, is infuriating. Especially when that pronouncement is delivered with a little smile and a wheelbarrow full of condescension. And a $600 bill, of course.

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    • April 19, 2013 at 10:55 am
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      Hi Anne,

      Yes, that’s right. And the ACR’s own studies show that significant numbers of people are not treated according to their own guidelines https://www.rawarrior.com/significant-numbers-of-ra-patients-dont-receive-recommended-care/

      I’ve been talking with patients and reading research 4.5 yrs full time. I’ve had hundreds of thousands of points of contact with tens of thousands of patients.
      As a skeptic and an optimist, it took me a long time to come to the conclusion that it’s not just me, but the evidence is overwhelming like you said.

      Yet when I have an experience like I had this week, even though there are 4 people in the room – I wonder if it’s me. Exactly like Nancy & others said, they make you feel stupid and inadequate. Do you see where I told Annette that I went through my old folder to look at my high labs? KB was frustrated with me, saying I don’t need that validation, but the condescension you describe is powerful.

      I can’t speak for the ACR – I know some good people there – I don’t know the answer to “how can this be” except that it’s a young profession & we are still very early in our understanding of this disease. One problem is obvious, that in decades past research was not focused on the actual disease but on joint symptoms only, with a lot of theories on symptoms being attributed to mental/emotional issues. Those theories are enjoying a revival right now, with revised terminology. (That’s one reason I’ve championed the great research of Mayo on how the disease affects the heart, etc.)

      Recently I wrote that a cure is the answer. It’s obvious, I realize, but look at how much non-sense would stop in its tracks when an effective solution is found. No more baloney about “no inflammation with a normal crp” or whether we imagine pain or exaggerate sx to get medications (as if people enjoy methotrexate?)! We are working hard to make our contributions to bring us closer to understanding the disease so that solution will be found.

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      • April 23, 2013 at 5:15 pm
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        The emotional thing irks me because it is a complete misinterpretation of an assortment of psychiatric and neurological theories. Blargh. I think I’ve gone on that diatribe before over and over again. Everyone wants to be a shrink but no one wants to crack open a book on the topic, I swear. I think I’ll bring my book on psychoanalytic diagnosis to my next appointment.

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  • April 19, 2013 at 2:27 pm
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    I have my first Rhuemy appointment in October.. Been treating my pain thru a pain management clinic. Been getting treatment for degenerative disc.. I had alot more goin on but figured i would just keep my mouth shut , take the meds and continue with life. This particular clinic would do random urine tests at 400 dollars a piece. Make sure ur taking the meds and not selling them.. Made me feel like a drug seeker. I did this for 17 years , Threw my back out completly at least 3 times a year.. Flat on my back a month at a time. Also felt sic and tired alot..Was tested for lupus etc. Wasnt until last year that my PA noticed my hands and fingers twisting sidways and of course the nodules. My bloodwork is “normal” That is when RA was considered . Like i stated my first RA Dr.appointment is in October. I have decided that i am NOT going to take meds. pain pills , or anything else at this time.. However i want the xrays to compare for later.. And i want the all important diagnosis. I cant take NSAIDs my stomach is a wreck. And although pain pills helped me alot i dont want them anymore either.. My liver is damaged. I do have good days , and on those days i dont want to “have” to take pills just to feel normal.. Im not judging anyone , remember i took pain meds for 17 years they kept me up and moving.. I just dont wish to take them any longer. So im not looking forward to this Dr. visit , but i am gonna go , just to keep my options open. Thank You for having this forum. Kim

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  • April 19, 2013 at 3:47 pm
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    Kelly, my story parallels many of these. My sed rate has always been normal. 3 Rheums claimed to see no swelling and one even wrote in his notes that it was just “body habitus” – aka FAT – not inflammation. I had an MRI report that noted extensive swelling and the Rheum didn’t agree with the Radiologist’s assessment. Therefore, it was disregarded.
    Up until that point, every Rheum was swayed by negative lab tests which determined their lack of action. Last month I met Rheum #4. He is my own angel sent from Heaven (via UAB)! He did the most magical thing to measure my inflammation…an ULTRASOUND!! With all of the pricey labs and imaging that I’ve been through, no one ever mentioned doing a simple, fast and relatively inexpensive ULTRASOUND! There it was!! My validation was crystal clear! Treatment has begun, and going quite well, but WHY is this not the norm when labs are inconsistent and Xrays can be subjective?? Has anyone else had this procedure used to diagnose their inflammation?

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    • April 19, 2013 at 4:10 pm
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      Hi Annette and Lynn,

      I just wrote the RPF Board incorporating many of the suggestions you’ve made into a proposed project. Something has to be done !!! I know that Kelly and the RPF Board work tirelessly on our behalf every single day. I’m confident they have many projects in the works.

      Lynn, I had a power doppler ultrasound shortly after diagnosis and recently. You’re right. ULTRASOUND shows erosions, areas of active inflammation, and pockets of fluid in the joints.

      One would THINK ultrasound or MRI results are conclusive, however, my rheumatologist- who knows the results of both my ultrasounds says that there is “very little objective evidence” that shows current disease activity. I won’t go into detail about all the other objective evidence presented. THIS “TREATMENT” HAS TO STOP !!!!! I see it as a crisis in rheumatology care. The consequences on our lives is HUGE !!

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      • April 19, 2013 at 4:38 pm
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        Thanks Sally, I look forward to seeing your project. Maybe we could write letters to all of the Fellows of the ACR as well. They are the bright lights of rheumatology and I am sure they would love to find a way to raise the level of competence of the lowest 20%.
        Remedial rheumatology – what a concept!

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  • April 19, 2013 at 9:44 pm
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    Has anyone here had the Vectra blood test? I am seronegative with the regular blood test but this test shows if your RA is mild, moderate, or severe and also indicates which biologic has the best chance of helping. I am lucky to have a great dr. who took an one look at an MRI of my wrist and started aggressive treatment right away. However, we tried one medicine after another without much help. The erosions in my hands got worse and I felt worse. But with the Vectra we now know exactly which biologic has the best chance of working.With me, it is Actemra. I don’t know if all insurances cover it but it is worth asking. I wish everyone well.

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    • April 19, 2013 at 9:49 pm
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      Lorea, the vectra test does not show which biologic will work – they are still working on developing tests that can do that.
      It does indicate level of disease activity in some patients. We still don’t have a test that works for everyone. It’s best to have more information, if there is doubt, so it’s a good tool.
      If insurance doesn’t cover it, the company has a good program to help out patients with the costs. We have talked about the test a few times here on the blog – I’m so glad to hear it helped you.
      More here: https://www.rawarrior.com/a-paradigm-shift-in-rheumatoid-arthritis-disease-activity-part-3/
      Good luck with the Actemra!

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    • April 20, 2013 at 11:45 am
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      Hi Lorea,

      I had the Vectra-DA test and received a low score indicating disease activity in a low or remission status. This didn’t make sense to me based on how severe my symptoms are. Within the same month, I had an ultrasound that showed erosions, active inflammation and effusions indicating high disease activity with ongoing damage. The conclusion of the radiologist was “worsening rheumatoid arthritis”. He compared the results he got to the previous ultrasound. As we know, ultrasound has been shown to be a reliable and valid measure of rheumatoid disease activity.

      Please see the recent- March 2013, EULAR guidelines including a review of research that supports the use of ultrasound and MRI in rheumatology here: http://ard.bmj.com/content/early/2013/03/20/annrheumdis-2012-203158.full.pdf+html

      I think a reasonable explanation for my low score (false negative) is that the Vectra-DA includes CRP and other inflammation markers. I was on corticosteroids at the time. I spoke with a leading rheumatologist who said that the use of corticosteroids can dampen inflammation markers on blood tests and this would lower my score. I also know that my CRP and ESR have been consistently normal, which is the case in between 35%-45% of people with RA (Pincus and Sokka, 2009; Wolfe and Michaud, 1999). For these reasons,
      I won’t be having another Vectra-DA test. I know the Vectra-DA has helped in some people. I think there is tremendous danger if a false-negative test stops someone from getting proper treatment.

      References:

      Pincus, T. Sokka, T. Sokka T, (2009) Laboratory Tests to Assess Patients with Rheumatoid
      Arthritis: Advantages and Limitations, Rheumatic Diseases Clinical Notes Am, 35, 731-734. doi: 10.1016/j.rdc.2009.10.007

      Pincus T. (2009) Erythrocyte sedimentation rate, C-reactive protein, or rheumatoid
      factor are normal at presentation in 35%–45% of patients with rheumatoid
      arthritis seen between 1980 and 2004: analyses from Finland and the United
      States. Journal of Rheumatology, 36:1387–90.

      Wolfe F, Michaud K. (1994) The clinical and research significance of the erythrocyte
      sedimentation rate. Journal of Rheumatology,21:1227–37.

      Wolfe F, Pincus T. (2001) The level of inflammation in rheumatoid arthritis is determined
      early and remains stable over the long-term course of the illness. Journal of Rheumatology, 28:1817–24.

      Reply
  • April 19, 2013 at 11:15 pm
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    You have no idea how much I relate to this post. Those of us who have complex medical needs and find a way to obtain coverage, we often have hell finding a doctor that can handle any of the multiple issues. I have mitochondrial disease and the situation is bleak, basic management of disease is too much to ask. Thanks for blogging so people like me know we are not alone. You’re in my RSS feed.

    Nick

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  • April 20, 2013 at 9:01 pm
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    I don’t get it, I really don’t. Why would anyone spend all those years in medical school and residency to be a rheumatologist and then doubt, dismiss and disrespect all the patients who seek help for their RD? I know there are bad doctors and quacks in all specialties (as there are good and bad practitioners of all skilled trades), but it definitely seems like rheumatology has way more than its fair share of horrible doctors. Why even bother to study rheumatology if you don’t believe that it’s really a serious illness or that it greatly affects those who suffer from it? What about rheumatology attracts such uncaring and incompetent doctors looking for a specialty?

    I know there are some very good rheumatologists – people have posted about them here, and I think I have a pretty good one right now myself. But there are also so so so many bad ones, and the bad does seem to outweigh the good. I guess it really is medical education that keeps churning out these awful practitioners. We need a study that catalogs the good ones and traces where their got their M.D., where they did their residency, etc., and then figure out what they’re doing right at those places compared to what they’re doing wrong everywhere else.

    It seems like an overwhelming task, especially since the people who really get it and care (like you Kelly) are sufferers of RD who must battle pain, fatigue, medication side effects and all the rest while also battling the ignorance both within the medical community and in the general public.

    Thank you for all you do.

    Kathleen

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    • April 23, 2013 at 5:28 pm
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      I think one of the things that makes finding a decent rheumatologist so tough is that no one wants seems to want to be a rheumatologist. I didn’t like my primary care physician, so I went on my insurance company’s doctor finder thing and found almost three hundred in my town of a hundred thousand people. I didn’t like my psychiatrist, and there were around twenty outpatient providers within a twenty minute drive of me to choose from. Rheumatologist? Eight within an hour, which is a higher number than in other parts of the country.

      I can’t help but wonder if there is a higher-than-usual tolerance for bad medical providers in rheumatology because there aren’t enough of them. Yeah, rheumatology is a lot of throwing darts at the wall and “putting up with” pain management. But you find that in a lot of medicine, get over it doctor people.

      Reply
  • April 23, 2013 at 9:17 pm
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    This hit home for me….I go to doctor have my list and all I hear is “that’s not RA” all she looks at is between joints on hands..presses and says, “does that hurt?” I try to explain the grinding in my knees, neck, elbows, swelling in my feet and the pain in my hips. I do take Enbrel for last year. She allows 2 tramadol a day and 1 hydrocodone a day if needed. My ENT doc is the one who found I had RA because of voice box joints being big and red. Not sure how to handle the pain from all this. NSAIDs can’t take.

    A big thanks to you Kelly!

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  • April 24, 2013 at 10:49 am
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    Thanks for this site. My first rheumy didn’t want to say I had RA because I was too young and my blood work came back negative. When I was in the office he appeared to care but if I called and needed a call back, I never got one. I was going to change but he said the right things at the last appointment so I decided to give him another chance. Big mistake surprise surprise, I was in pain and needed him and he didn’t bother to call me back. I went to urgent care and the doctor told me “why are you here you should’ve gone to ER?” I looked at her in total disbelief because here is a doctor that doesn’t know me and is willing to listen and do a check up when my own dr isn’t willing. I decided to change doctors then and my rheumy made me cry by the end of the appointment. She told me I was on too much medication and she didn’t believe I had RA and instead fibro. She also told me that my joints weren’t swollen but my tendons! I told her I know it might not look swollen to you but when I can’t wear shoes or rings, I am swollen. She sent me the Vectra DA because she said that would be the ultimate answer. Surprise surprise when I saw her again my score was 48! For those of you that don’t know that is considered hight. She told me she was very surprised and now she wanted to try other injections and started to pay attention to my complaints. Let’s hope she continues to pay me attention.
    If she stops I will change drs again. I refuse to cry at an appointment or made to feel like my symptoms don’t matter when I am the one feeling the pain regardless of my age or what they see on that particular day.

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  • April 25, 2013 at 2:32 pm
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    I am so glad you wrote this. I’m 26 years old and I was diagnosed when I was 23. I had my first symptoms when I was 19, which got progressively worse. I would go to the doctor and no one had any answers. When I suggested RA because it ran in the family, every single doctor’s response (and there were a few) said that I was too young.

    I finally went to a doctor (who again told me I was too young) and demanded I get the RA blood test. He felt it was allergies. $1,200 worth of allergy tests later, which were not under my insurance plan, I had RA. I wasn’t allergic to anything. Then the doctor, who was a doctor at a TEACHING office, started to treat me for regular arthritis by putting me on Mobic. It didn’t do anything. I continued to see him until one day he told a student that my symptoms were morning stiffness, which were uncharacteristic of RA. I never went back – if you can’t realize the tell-tale symptoms of RA, you are an idiot doctor. I have since gone to 2 different RA doctors. I’m happy with the one I have now (I’m in the Tampa Bay Area Kelly – if you’re in this part of Florida, I’d be happy to pass on the doctor’s info), but I still find myself having to micromanage everything he is doing. I guess I’d have to say that if you don’t like what the doctor says, and if they don’t have answers, find the answers or a doctor that can give you answers. It makes my blood boil that there are so many doctors who do not put enough effort into finding out why a patient is feeling a certain way, so I guess that’s up to us to micromanage what our doctors are doing, and constantly asking why. Thank god for the internet and websites like this that post information so that we can do our own research on our disease. Keep posting – and don’t be afraid to diss a doctor that clearly does not know what he is doing. More people need to post about doctors, rate doctors online and write to boards if their doctor clearly doesn’t know what s/he is doing.

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  • April 25, 2013 at 3:07 pm
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    OMG!!! I think I’m seeing Dr. Tylenol and Dr. Shrug too!!
    I am still searching for Dr. Smart but being in Po Dunk I am starting to think I am facing an impossible task. I’ve even asked other doctors if they know a good rheumatologist .. no, of course not. Not around here any way. I’ve been doing this for a little over a year now. I am so glad I found this place, at least I know I’m not the only one!
    I’ve been made to feel like I’m seeking attention or ‘drugs’. Even my own son calls me a hypochondriac. My family doctor told me I’m just getting old and it’s expected. Old.. uh-huh. I’m 43. Maybe I am no “spring chicken” anymore, I am more of an “early to mid summer chicken” but I am certainly not “OLD”! ugh.

    am I ranting?? I am, aren’t I? Sorry, it’s just soooooo frustrating!

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  • April 27, 2013 at 11:04 am
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    In reading the post I count my blessings I have the Dr that I have. Not perfect but not condecending or dismissive. She does not look at everything but seems to write everything down and keeps my meds refilled. I do worry about the direction of the healthcare system.

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  • April 28, 2013 at 5:09 pm
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    please come to Maryland. Dr. Mullins is wonderful. best yet –he has an autoimmune disease himself. he understands. make the trip.

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  • April 29, 2013 at 6:12 pm
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    I feel for everyone with RA and every other chronic disease. I am currently finishing up my second year of medical school and just recently decided to plan to go into Rheumatology. I was diagnosed with RA two months ago after seeing many doctors and having many lab test run. I also do not understand why it is so hard to find doctors who really listen and believe their patients. I have become so frustrated and I have only been dealing with this disease since January. I have spent most of this semester laying on my couch with heating pads covering most of my body studying, because sitting up and leaning my neck down to read is near impossible for more than an hour. At first I kept asking myself why now? Why in the hardest semester of medical school do I have to become diagnosed with RA? Then one day it all made sense! All of these things that I am going through are occurring at this crucial time in my life because this is when it would have this biggest impact on me. I have gone through the majority of this semester with no treatment at all and had to deal with the pain on my own. Then since my diagnosis I have been taking high doses of Prednisone (which are not good for long lengths of time, but have so helped me get through long days of studying and finals). I am still currently not on any type of long term treatment, which is very frustrating.

    However, through these four months I have realized that there are so many other RA patients that are going through these same frustrating experiences. Many of you have been going through them for years and I am so sorry. I now have learned how very real the pains/aches/swelling/FATIGUE can be. That lab work is not everything and that you must listen to your patients and that their symptoms should be what you treat. I now know how crucial it can be to get in with a rheumatologist quickly. I now understand how it feels to have a disease brushed off as “mild”, when they have no clue how much pain you are in or how much it has altered your life. The list goes on and on, but all of these experiences are shaping what kind of physician I will be one day.

    It had never once crossed my mind until February to become a Rheumatologist. I quickly started wishing that I could find a doctor in my area that had RA so that they could truly understand what I was going through and help. That is why I want to go into Rheumatology, so I can give that to patients and connect with them on a different level than most. I don’t want my patients to have to go through experiences like the ones above that only make this disease that much harder. I will continue to learn more about RA and patients needs through this site over the next few years in addition to my training. Thanks so much Kelly for all you do! This site has truly helped me through some tough times over the last few months. Good luck to all of you and hang in there!

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    • April 29, 2013 at 7:03 pm
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      good luck Carley. I know a few physicians with rheumatoid disease. I would love to help enable some type of communication between them/you.

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    • April 29, 2013 at 7:43 pm
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      You can come set up practice in my town, Carley. Tomorrow work for you?

      Seriously, best of luck with getting the care you need, finishing your education and training, and getting into practice. I hope, too, that by knowing you, other med students you go to school and through residency with may have a better understanding of what autoimmune diseases can do to a person.

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  • April 29, 2013 at 9:21 pm
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    Carley,
    I’m really sorry to hear you have RA. Thank you for sharing your story. Your patients will be so lucky to have you as their doctor, but if you can also educate other physicians about your experiences with the disease you will unquestionably become one of the best advocates for the entire autoimmune patient community.
    If you wouldn’t mind, please keep posting comments on this website, letting us know how you are doing. Although I am not a doctor or med student, I am in a high-stress, long hour profession. To the extent you figure out different ways to manage the demands and grueling requirements of your training and job while living with this disease, I would be most grateful if you would share them.

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  • May 6, 2013 at 7:39 am
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    When the doctor said, “You’ve had so many drugs; if they don’t work, maybe it’s something else.”, I would have jumped at that one – ‘Thank you. Please refer me to someone who can diagnose it and help me.’

    You could still call back and make that request. Put it back on the doctor, who shouldn’t be treating you anyway if he/she doubts the diagnosis.

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  • May 9, 2013 at 12:31 pm
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    I LOVE love love my rheumy!! He is Dr. John Hicks in Greenwood, SC and he treats me like a friend and someone he really cares about. He knows his stuff! I drive two hours to see him but it is worth it. His staff is great, too. I remember being so scared that first visit because I was afraid I would be left without answers or he wouldn’t listen, but he takes so much time with me. I feel so blessed after reading some of the stories on your website.

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  • May 9, 2013 at 3:47 pm
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    I love my Rheumatologist as well, he is in Marietta, Georgia. However, I am a newly minted rheumatology patient. Although I believe this has been the cause of my pulmonary symptoms for the last 13 years. Most of my symptoms are extraarticular and I ended up in the hospital for several days with shortness of breath and cyanosis. Fortunately, I work in healthcare and know how to get who and what I want done. Although, we are still searching for the right treatment for me, for today I am on Medral and feeling pretty good.

    Reply

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