Joint Examinations with Rheumatoid Arthritis | Rheumatoid Arthritis Warrior

Joint Examinations with Rheumatoid Arthritis

Today, I had scheduled a special good news list. It has to wait until next week – I can tell you why then. Good things come to those who wait – at least my mom told me that – so I hope so.

How about the uncomfortable topic of joint examinations?

stop sign not past this pointAs I said yesterday, there are a lot of things going on. Yesterday, I finished up a blog for Dr. Luks’ orthopedic website on the unlikely topic of “doctor bashing” – check it out at this link. Dr. Luks is a pioneer at engaging patients online and I hope you’ll check out his blog. It makes me smile when new people follow him on Facebook after I’ve shared his articles.

If you know me, you know I don’t even want to complain if the meat is undercooked, much less complain about a medical problem or a doctor. It’s like some cosmic joke that someone so private writes a blog at all. …And about topics as utterly personal as pain and relating to doctors.

Sometimes, I swear I can hear some of our great aunts whispering from the corner, “Doesn’t she know it’s not polite to talk about that?” As my Roo would say, “Act-u-al-ly, I do.” I know people are not supposed to talk about physical pain and medical problems in public. Unfortunately, it’s what we must do thanks to the assertions of USA Today, et.al.

Some questions about joint examinations with RA / JRA / etc.

For the reasons just mentioned (I don’t support doctor bashing and I hate to talk about sticky personal medical topics), we’ve never discussed what it’s like to get an RA clinical examination. True, physicians vary and even rheumatologists vary. But, I’ve heard from some of you and I’d like to hear more.

  1. Does the doctor move your joints for you? Or ask you to move them?
  2. Does the doctor press on joints to check for subtle inflammation?
  3. Does the doctor take into account what you say about the joints?

One of the first emails I opened this week was from a mom of a teenage JRA patient. I’ve heard from the girl’s mother and the grandmother several times over the last year. When I read about Kaitlyn’s last rheumatological exam, I was sad. “Her doc went through the motions of pushing, prodding, twisting and turning her joints and tells her she can do better as he is forcefully straightening her joints for her.”

While I’m being careful not to bash anyone, but just communicate the facts, I want to question this practice that I’ve heard from patients before. There are some YouTube videos for training on joint examinations and that is not what is shown. Of course, I’m the patient; not the doctor. However, when that type of joint “examination” has been performed on me, I did not appreciate it. It is difficult to have trust in a doctor who seems to be forcing my joints to move past their comfort level and insisting that I can “do better” as Kaitlyn’s doctor did.

Do you think that’s unusual?

Recommended reading:

Kelly O'Neill Young

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

51 thoughts on “Joint Examinations with Rheumatoid Arthritis

  • January 21, 2011 at 8:30 am
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    I don’t officially have RA. Instead, I’ve been diagnosed with Palindromic Rheumatism. That said, RA runs in my family and while my blood tests keep showing neg for an RA factor, I’m waiting for the day it does show up. Meanwhile, since the tests have always been negative, just getting diagnosed with PR was a frustrating journey that spanned years from high school until my early twenties. And the WORST part, even beyond the skeptical scrutiny from the docs who thought it was likely all in my head, was the hand exam in which I was invariably pulled, torqued and wrenched. Finally, I was hooked up with a doc who treated me like my joints might actually hurt as much as I said they did. It was a huge relief for someone to approach me as if I was a patient with a problem rather than a crazy person looking to become a patient. Since then I’ve been to several physical therapists who were likewise gentle and attentive, and very helpful in evaluating me for Ring Splints. And on another note, those Ring Splints have changed everything, making my life practically normal. I would recommend anyone suffering from RA to look into them (Silver Ring Splint company) if they need/want stability and support for their joints.

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  • January 21, 2011 at 9:08 am
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    Thank You Kelly for this blog post…I also do not agree with Doctor Bashing but I also agree with the facts. As I have seen it, with my Current Rheum Doc, his exams are extremely incomplete.
    1. I have never been put in a johnny for an examination
    2. He has never examined more than 2 or 3 joints.
    3. When he examines them he moves them and maybe presses them a bit
    4. Most joints, other than those visiable through clothing are examined through my clothing.
    5. My exam lasts less than 2 minutes
    6. He never looks for subtle swelling
    A patient cannot argue with the facts of what we see and for me it is obvious that my Rheum Doc give inadequate exams. The sad thing is from what I have heard from many patients is that this is probably the norm. Is this due to the lack of Rheum Docs and the time available to these Docs. Are they overbooked and over-workd? Very Possible….but the sad thing is many patients who have subtle swelling end up being under-treated and overlooked both in treatment and diagnosis.
    Again I am NOT doctor bashing. I totally respect my care providers but there is something wrong with the system here…and we as Rheum Patients deserve more…

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    • January 21, 2011 at 9:37 am
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      Susan, when the doc gently presses, he may be checking for subtle swelling. That’s one way my doc does & while it hurts, I appreciate it because the swelling that is not obvious from across the room is documented in this way. This is one reason I like the doctor I have now. I have also had those docs who examine you from across the room by not even touching you. And also some who are more like Kaitlyn’s doctor. At those times, I wish there had been a hidden camera LOL. It was not good practice. I wonder whether there is a clear standard of care that is being followed about joint exams – are some docs just poor at it or is it not clearly standardized? Of course, there is also the time pressure on rheum docs due to the shortage of them and how many patients they must see since they are often not paid as highly as other specialties.

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  • January 21, 2011 at 9:32 am
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    My doctor and I have a great relationship. I am a very open person and not afraid to speak my mind and he actually listens to what I have to say. Sometimes there is a debate, sometimes we joke and sometimes I am stubborn.

    On one particular visit, I was in a really bad flare. My doctor was doing all the painful pressing, pulling, bending, etc. My wrists were so flared I could not bend them. Well my doctor went to bend my wrist and I literally flew off the table and screamed “oh my gosh that flipping hurt”! My doctor decided to make a joke saying “that didn’t hurt me a bit”. So I proceeded to respond with “when I kick you the next time you ever do that again, I can guarantee you will feel it”. We both laughed but it worked. He has never been more gentle since that day about a year ago.

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  • January 21, 2011 at 10:27 am
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    Kelly,
    We are SO glad you’re back, but we’ll be especially happy if you’re feeling better as a result. For all that you do, you deserve to be more comfortable!
    Now… you are so on target –as always–again today, and although we know doctor bashing won’t get us very far, this discussion on what the rheumy doctors should NOT be doing is very necessary. As A. Grey and Susan point out, RA and JRA patients, including my 13 year old granddaughter Kaitlyn, will not improve if they are treated like people who come to the doctor to get a day away from work or school! Other than the JRA, Kaitlyn is a normal,friendly, cheerful, and active teenager who has done all that her doctor has advised her to do–and respected the doctor’s suggestions for treatment of her discomfort (physical therapy, exercise, relaxation techniques, the meds of methotrexate and humira, etc)–but very little is working, and pain is very intense on bad days. She is not overweight, weighs only around 75–80 pounds, follows good eating habits and has a healthy daily routine. Kaitlyn loves going to school and being with friends, forces herself to go to school most of the time, and participates in as many school activities as possible, but there are really bad days when she cannot even move easily in her own home–has difficulty getting out of bed, sitting, walking around, moving fingers, eating because of mouth sores etc etc. What happened to the old adage that your emotional state of being affects your physical state? A doctor telling a patient that she shouldn’t be feeling any pain because she’s has all these meds etc is wrong, and roughly pushing her fingers upward and twisting the patient’s hips til the pain is excruciating is very wrong…..Susan’s doctor is too gentle (and as she says, this makes her examination incomplete and inaccurate), and this other doctor is the opposite–there has to be a middle road out there somewhere. Having said all this, I am sure there are some doctors out there who are caring and thorough in their exams–we have heard from some of your comments that there are, and we have an appointment soon with a doctor recommended by a family friend. We will hope that perhaps there will be some improvement soon for Kaitlyn.
    By the way, it would be great if we could form a state-by-state list of doctors who are especially good in this rheumatolgy field –from patient assessments only. This might be especially helpful for people just starting the process of being diagnosed or for people who want to change doctors. As we have all read, sometimes it takes many years for diagnosis and visits with many doctors before the right match can be found for an individual patient’s needs. Kelly, if I could help in any way in this, I would be happy to do so–you are fantastic, and your supporters rely on you as much as we do the doctors–well, maybe even more! Sorry to be so windy, but writing as we all know, is also good therapy!

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    • January 21, 2011 at 11:04 am
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      Such wise words Vi. Thank you. I know there is a need for such a list and we should think about a “safe” way to do that. I can say that if I ever need a new doctor, I’ll call the American College of Rheumatology and request a recommendation. If the doctor is a member there, it is more likely they are more up to date, educationally. And, here’s the hard part, if a doctor on their roles does not treat properly, we probably need to let them know about it. I don’t think they are used to hearing from patients, but a letter would be in order anyway because they need to know.

      My heart goes out to your family as also to Jenna and the many other kids living w/ JA. I will never forget the things you have shared with me about her case as I work to find ways we can improve care. She is so lucky to have you.

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  • January 21, 2011 at 12:35 pm
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    My rheum doctor’s NP is the person who normally does the joint exam on each visit. She firmly (but not severely so) squeezes or pushes upon every joint, including each finger joint, wrists, elbows, shoulders, hips, ankles…and has her assistant write down amount of swelling and pain in each joint. She asks me to tell her the level of pain I feel in each joint as she does this. It can be somewhat painful, but she tries to be as gentle as possible, and I am glad that they are being thorough and recording fluctuating and/or progressing pain and inflammation in my joints. If I am experiencing a lot of pain in a certain joint, they will bring in the ultrasound machine and technician into the room to take a look and see what is happening. At times I’ve had a muscle tear and tendonitis or bursitis in the shoulder and hip, and they’ve used the ultrasound to help guide an injection of kenalog or other cortizone drug into the affected joint. I try to reserve that for when the pain is most severe; I hate using steroids, but the shots certainly do bring relief. From the sounds of things, I have a very good rheum compared to many. His father has some sort of autoimmune disease, because he has been in the infusion room getting treatments when I was there, so maybe having a family member who suffers has made this doc a more sympathetic and diligent rheum. Whatever the reason, he has never said a negative, harsh, critical, or dismissive thing to me. My only complaint, if any, is that he is so busy that it’s hard to see him. He tries to see his patients at least once a year, and in my experience, that visit is a lengthy one, but most office visits are with one of his NPs, although they do seem to consult closely with him regarding treatment, lab tests, etc. and the NPs are very sweet-spirited and compassionate.

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  • January 21, 2011 at 12:57 pm
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    Hi Kelly, Thank you for posting such a great topic!!! I have a daughter who has been roughly examined by her rheumy!! She has been in tears more times then I care to recollect. My favorite was when he said to her ” so whats wrong?” my daughter responded by saying “my hips really, really hurt.” he asked her to lay on the examining table and forcefully pushed her legs and then turned her hips outward and she started crying, tears flowing like a river!!! I begged and pleaded for an MRI and with much pleading ( and begging) he followed through on my request. Sure enough the foundings were true to her pain. Needless to say after all the tears she had that particular day, you would think he would have learned from that incicdent. Nope! continues to be rough, and just last week when he examined her again, she told him she was going to kick him if he is rough, he just laughed and continued with his poor examination. I’m not asking for him to be gentle but rather to take her pain threshhold into consideration, a middle ground for joint exams would be awesome!!!!

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  • January 21, 2011 at 1:19 pm
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    If the rheum did that to my daughter I’d be up and out of my chair in a HEARTBEAT! I am so sorry that this family had to go through that. What on earth would possess a doctor to do that to ANYONE especially a CHILD?! Makes my blood BOIL to say the least!

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  • January 21, 2011 at 1:31 pm
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    I’ve been fortunate to have had two very good RD’s ithe two different states where we have lived. Both have done joint exams and have not used force. My current RD has me complete a form on each visit describing my current RA activity etc. I’ve noticed that both RD’s shake my hand very gently when they greet me. I have never felt “rushed” by either RD and both always ended my appointment by asking if I had any questions they could answer. Guess I’m a very lucky patient.

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    • January 21, 2011 at 1:41 pm
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      Thanks for posting the good example Margie. It helps others to know that there are different types of docs out there. Helps people to have hope too.

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  • January 21, 2011 at 3:04 pm
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    I am very blessed that my rheumi is too soft! : ) When she feels my joints for imflammation and pain, she is so soft, she never hurts me! I have to feel around my joints to see what hurts, so when she checks them I tell her they are tender, even though not with her touch! I mentioned she was so delicate one time, she said she didn’t want to hurt me! : ) She never shakes my hands, but always has a warm smile for me. My SI joints in my hips flared up last week, so she had to manipulate my leg to see if indeed was my SI joint. When she turned it just so, I about went through the roof! The pain was instantly much worse and was an easy 10! She immediately put my leg down and kept apologizing! For this I am grateful. She does answer all my questions, and believe me I ask, but she is a “clock watcher”! That part I don’t like, but I don’t let her get away if my questions have not been answered! : )

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  • January 21, 2011 at 3:22 pm
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    I too have a great doctor. I have been seeing him for over 20 years. My appt start with me filling out a pain form. I rate my pain and the ability to do things. When the dr comes in we usually spend 5 minutes talking about the local pro basketball team. I know he uses that to get a general idea of how I am feeling. The better I am feeling the more animated the conversation. My RA is a bit out of the norm as it started in my knees and elbows. For the longest time it was pretty much limited to those joints. Even so, he has always examined and x-rayed all my joints. He said he wanted to make sure we caught any additional joints before the RA could cause damage. He will move and feel the joints. He always backs off the moment he feels resistance or I show any sign of discomfort. I have never felt that my concerns or questions were dismissed.

    After reading many of the post here, I feel very fortunate to have found Dr G. It’s probably corny, but my doc rocks!

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  • January 21, 2011 at 3:48 pm
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    I am newly diagnosed and I am still getting to know my rheumatologist, having seen him only three times. I have to say that his examination of my joints is not only thorough, but also very gentle. I was on Plaquenil to start but after my most recent visit at the beginning of January, I have had Methotrexate tablets added to my treatment. My wrists appear to me to look as they always have, but my doctor suggested that we add the mxt he noted the presence of continued swelling in them. I would have to say that he is good at what he does.

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  • January 21, 2011 at 6:03 pm
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    My rheumy is VERY gentle – he has the most gentle handshake I’ve ever experienced. He typically examines mainly my finger joints by gently pressing and feeling for inflammation. Sometimes I wonder why he doesn’t look at everything else but my hands have been my main problems and are a pretty good barometer of my disease activity. I’m sure he’d do more if I told him I was having a lot of problems elsewÿýyYÝhere. Recently the office has stared having patients fill out a self evaluation form at the beginning and I think that really helps give the doc a good idea of how you are functioning.

    Besides being nice, gentle and informative, I like my doc because he really truly cares about his patients and their pain levels. Plus, I first came to him in the midst of my worst flare to date and he was able to help me get immediate relief! 😉

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    • January 21, 2011 at 10:09 pm
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      Your case is almost picture perfect in some ways, Dana. An example of what we want for many more patients. Hopefully, with more treatment options and earlier diagnosis, it will be more common!! :rainbow:

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  • January 21, 2011 at 6:13 pm
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    Thank you to all of you who have posted your positive experiences with your rheumatologists! We know that there are good doctors out there, and your comments have reinforced our beliefs….now we just have to find one! We are happy for all of you who have been so fortunate, and we really appreciate your input because you have given us hope. Now, we will just keep searching for the right match! Thank you, too, Kelly, for your continued support and for giving us all the opportunity to share our experiences….you are so special!

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  • January 21, 2011 at 6:41 pm
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    I must say that when I read the posts that the doctor is rough not sympathetic to the pain and needs of the patient makes me sooo very sad.. I have a great doctor and he is always gentle and always shakes my hand very gently when he first comes in.. He always checks my joints and is always very interested in the ones I tell him hurt. He checks for swelling and redness.. I always get answers and when I call he has the best nurses.. they know me and always call back.. with the information I am in need of…I now feel like I have the very BEST rheumatologist.. I wished we could all have ones like I have.. esp.. the children..
    thank you Kelly, I am new here and I am really glad you are back..I did not know what I was missing…

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  • January 21, 2011 at 8:58 pm
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    My doctor, when he first saw me, examined all of my joints. I was in a hospital gown so he could see everything and hand me stand, walk a little, raise my arms, pressed on spots (i assume for fibro) and asked my about what hurt. Afterwards, is when it hurts. So the next time I tell him, please don’t press so hard on so-and so joint, and he will listen. He shakes my hand in the gentle way and tries to add humor (even when I don’t feel so great about my level of pain) to reduce the complaints. He has told me to wear clothes that he can see my knees and ankles with. We have had a close call when I had a freak out (I thing I was on a lot of prednisone) at the time and used the f-bomb! He calmed me down, tho. I was so overwhelmed with the diagnosis and how no one got it at home that I just had a melt down. poor guy. But he still let me be his pt! Ha ha! This is a hard disease. A lifetime disease, frought with pain and frustration. Its a path that rheumy’s take, either jaded, frustrated themselves and patients’ at arms length, or compassionate and frustrated they can’t do more. xxxooo

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    • January 21, 2011 at 10:07 pm
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      oh, Beth that is sooo wise. It is a path. Hopefully, we can also engage and help more to be on the right path.

      Thanks for the laugh too. :O

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  • January 22, 2011 at 12:59 pm
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    One more question…..do any of you who are happy with your pediatric rheumatologists living in the Boston area–or within an hour in any direction?? We would love to have names of any doctor near us who might be more helpful for a child than our previous doctors have been. Please let me know, and I will give you my e-mail address so that you can send me the info. Much appreciated! As we all know, sometimes a doctor works well with one patient and not with another, and we all need to have alternate choices, just in case! Thanks!

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    • January 23, 2011 at 9:25 am
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      Vi D,

      I do not know any doctors in that area, but I do know that the only thing that straightened me out from the beginning of RA and through many flare ups over a 20 year period is a medication called Methoprednisolone. It comes in a Pack and you take six pills the first day, five the second, and so on, until the final day, you take one pill. This med was and has been a miracle drug for me over the years. I am not sure if they would give it to a child, but if you have not heard of it, or tried it, you may wish to ask the RA doctor about it. Once the “Med-Pak” gets you on the right path, then other medications my work their magic. God Bless and best wishes. Kay (I made a long blog (I think it is no. 19, if you wish to read it.)

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      • January 23, 2011 at 4:21 pm
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        Kay,
        Thanks so much for your response, and I will certainly pass on the Med Pak suggestion to my daughter, and she can ask the new doctor about it when she takes my granddaughter to her appt. in a couple weeks. Believe me, we appreciate any and all suggestions of ways to help….we live on faith that one of the new ways will be the solution to at least some of the discomfort of this disease. You’ve had more than your share of bad days too, and we’re so sorry for that. We’ll think good thoughts and hope that some miracle solution will come up that will give you more comfort as well! Thanks again for your concern for us.

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        • January 23, 2011 at 4:28 pm
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          Vi, what she is referring to is a type of prednisone dosing. I’m sure your ped rheumatologist would do what is safest for Kaitlyn on that matter. Prednisone is often a miracle for RA symptoms but has to be managed carefully for side effects. Continuing to pray for the best for her.

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          • January 23, 2011 at 5:14 pm
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            Kelly, thanks so much for your input on this med as well. The side effects of so many of these meds are what frightens us as much as the disease does! From what we have read from your RA Warriors, we know that there are some very caring, capable and concerned doctors out there, and we are looking forward to finding one of them soon. We are anxious to see what this new pediatric rheumy’s assessment will be of Kaitlyn’s situation, and we are hoping that there will be some suggestions that will relieve the intensity of the discomfort. We also look forward to a doctor who will not shrug off parental questions as irrelevant or unimportant
            . Also, we know not all medical or non medical treatments work the same way for everyone, but we thank all who have expressed what worked for them. Most of all, we thank everyone for the emotional support that helps during trying times….so, so appreciated!

  • January 22, 2011 at 8:46 pm
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    My current rheum, on the first visit, did a very detailed joint exam. Her procedure was to have me go through range of motion first, then check each joint herself.

    She was quite gentle with the joints I identified as tender. Did make jump a couple of times checking out my feet, which I’d put down on the joint questionaire as not affected. Turned out they were, I just hadn’t noticed it yet. Can’t blame her for that.

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    • January 22, 2011 at 11:38 pm
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      No, can’t blame her at all. Sometimes I think that is a sign of a good rheum doc – one who can detect a problem with a joint even before you do by doing an exam. Part of the reason we might not realize it (as you with your feet), is that other joints may be hurting more intensely and we have a well documented tendency to “ignore” (tolerate the discomfort or stiffness since we have so much of it).

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  • January 23, 2011 at 6:27 am
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    hi, my name is Maureen, I was diagnosed with RA when I was around 40 years old. I suffered for 12 years on methotrexate and folic acid. I needed a change and went to a nutritionist who changed my life. I no longer take methotrexate and am pain free 98 percent of the time. It was a miracle and my RA doctor told me I was crazy, but it works. If you are interested in what I changed please email me.

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    • January 30, 2011 at 4:59 pm
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      Maureen, we realize that people respond differently to different approaches for RA problems, and if you had a good response to your nutritionist’s suggestions, it would be interesting to hear what helped you…..we are all always open to anything–especially on bad days! Thanks.

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  • January 23, 2011 at 6:33 am
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    just saw your article on aol. you are doing a great job helping us

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  • January 23, 2011 at 7:52 am
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    i just found your website. i have to share this with you. it may not help anyone or it may help just one person…..
    i have rh and it started in my late 30’s. my knees swelled
    and i was unable to walk within 30 days. i was put on
    medication with relief within days. i stayed on meds for
    years – with side effects. i read that red meat can be a
    trigger for rh. i stopped eating red meat years ago – i
    am pain free and free of meds. i am 63. this may not be your cure, but it may help just one person!

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  • January 23, 2011 at 9:14 am
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    I have had RA for 20 years. I remember I was first diagnosed with Fibromyalgia, but for the next nine months, my joints continued to swell and my feet felt as though I was walking on rocks. I returned to my General Practioner, and he said, “I think you are having the beginnings of RA.” He ran lots of blood tests, including one for RA, and the test came back positive.

    My GP sent me to a RA specialist in Richmond, and he started me on different anti-inflammatories, which gave me no relief. Finally, one Saturday, I called my RA doctor and told him that I had natural child birth, but that I would rather have a child everyday, than to suffer this pain. That is when he put me on a Methoprednisolone packet. It is a packet of pills, where you take six the first day, five the second day, and so on until the last day, you take one pill. Well, I took my first six pills the first day, and when I woke up the next morning and my feet hit the floor, they no longer hurt, and the rest of my joints and body felt much better, too. I thought to myself, this is a miracle drug.

    After getting me on the right path with the Med-Pak, the doctor put me on Methotrexate and another anti-inflammatory (I cannot remember the name of that right now). Anyway, my RA was under control for the most part. I would have flare ups from time to time, and the doctor would either put me on Prednisone or the Med-Pak again, depending on how much my joints hurt at the time. I would also get bursitis in my left shoulder a lot, and that was VERY painful, to the fact that I could not even put my hand out in front of my body. Anyway, I stayed on this basic regimen for about 10 years, then my RA doctor retired. I had been breaking out with shingles a lot, so my new RA doctor took me off of Methotrexate. Then, I started going from one thing to another for years, until I finally had to take Prednisone long term. After several years of that, Remicade IV came along, and I was having the IV every six to eight weeks. It was OK, but I felt terrible the entire time I took it.

    In 2005, I was stricken with Lyme Disease, and compared to RA, the RA was and still is a walk in the park. At least it could be controlled for the most part. But when Lyme struck, I started out with a high fever (102.8) then, after 2 rounds of antibiotics, I still ran a low grade fever for months. I had worked all along the way while I had RA, and lived a fairly normal life, raising a wonderful son, playing Putt-Putt for years, and socializing and being active with an art orgination since I was a teenager. My body became more run down, as I was being treated with Remicade and suffering with Lyme. My nerves became so bad that I had to stop driving to Richmond, and changed to an RA doctor close by. When I first was stricken with RA, there were no RA doctors close by.

    Lyme stopped me in my tracks. I felt like I had the flu everyday, and doctors would not treat me any further than the two rounds of antibiotics. My new RA doctor changed up my RA meds, and sent me to an allergist and to an infectious disease doctor, with the hope that I would get an IV treatment for Lyme. But to make a longer story shorter, that did not happen, because of the Centers for Diseases Control. It has been a five-year nightmare, that I would not wish upon the devil. My knees never bothered me, except in the very beginning of RA-some 20 years prior, but now my knees are giving me a fit. My energy level has been all but nil, and I have isolated myself, as if I go out and someone asks me how I am, I just want to, or actually do, break down. The reason I bring up the Lyme, is because Lyme affects the joints, too, so it is like a double whammy, and just having RA is bad enough, but having to deal with Lyme and doctors who do not want to treat you chronically for fear of losing their license, is very frustrating and depressing. The Centers for Disease Control puts the fear of God in the doctors, along with the insurance companies, and all you do is continue to suffer. After being ill for five years, I finally have been somewhat better in recent months, but my energy level is still down. One of the symptoms of RA is tiredness, and people do not understand that, and since I had Lyme added to it, I sometimes feel like I can barely put one foot in front of the other.

    Any of you out there who have RA, I wish you well- I know it is a long and hard road, but please be careful if you are anywhere that you think there may be ticks. Because if you think RA is bad, Lyme is enough to make you wish you could leave this universe. I have become physically, mentally, and financially bankrupt, and do not know what my near future holds. I will probably have to sell my family home, where my family has been for 55 years. It is a hard situation, as now I am running out of money fast. Only a miracle of God will help me at this point, and I am still holding on to faith, that something will happen to the positive.

    Well, let me go. I wish all of you out there in RA land, good doctors. Keep fighting, and tell them to put you on Methoprednisolone, and I hope that will get you on a better path.

    Regards,

    Kay

    Reply
  • January 23, 2011 at 9:36 am
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    Hi Kelly.

    I too had RA for a long time. at age 3 I had rheumatic fever followed a few week later with scarlet fever. I was a sickly child with aches and pains and complaints that were often looked at as my needing attention. I had tonsils removed, appendix burst, and strep throat at least once a year. I also had a lot of “growing pains. as a teen I had a lot of unusual swelling and pain that was blown off as a ‘fluke’ one time I colapsed at school could not talk or move for about 10 minutes and then had one side of my face drooping for about 9 weeks after. doctors were bewildered but did not look into things like arthritis or stroke for young people at the time. I entered the military and this old doc told me my back xrays were odd and my joints were ‘funny’ but blood tests were negative for arthritis. Once after riding a bike my knee swelled to three times its size, they had to cut off my pants unsure of the issue, I got a pelvic exam and told there was nothing wrong. Now at age 57 I am told that my lower vertebra and coxic is nearly desitegrated from arthritis. my fingers are all crooked. however, I dont think I have experienced as much of the pain as you describe. I learned in my late 20’s that taking apple cider vinagar and honey was helpful and have done this most of my life. I manage to do what I need to . I have raised 7 of my own children and three adopted, and about 43 foster children. i have 21 grandbabies and am the sole provder for the part of the family who live in my home. My husband is disabled and two of my children on hard times with 5 grandbabies depend on me. i keep going, working two jobs and trying to complete my phd. i hurtk but i live with it and the ‘attacks’ are rather mild perhaps becuase I am too busy, or due to the vinager and honey.. who knows…. keep up the strength and fight..

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  • January 23, 2011 at 11:20 am
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    Dear Kelly, Wow, I read your story which took me down memory lane…. so similar to mine. I had so many things going on and the doctors would just shake their heads and give me an antibiotic. They just didn’t know. Then I was hospitalized for 35 days…the last 10 days were in another city and I was put under the care of a rheumatologist who said I needed a PSYCHIATRIST! I let one come to my room in the hospital and he was absolutly nuts! I finally went to a rheumatologist in a larger city and within one month he had me diagnosed with RA, and started on Methotrexate. I was already on prednisone. It was wonderful to have a name put to my problem. I had researched and was very suspicious of RA. I took Remicade for two years. It really helped but I wonder about side effects. I have never been without prednisone and Methotrexate.
    Good luck to you and take care of yourself. I used to be afraid people would think I was crazy….but that is their problem.

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    • January 23, 2011 at 5:24 pm
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      Peggy!! A psychiatrist… I can’t believe how many patients tell me that. That is wrong. I guess the doctors just cannot fathom that it could feel like we describe it. I know the books do not describe it the way we do. The only place many people tell me they don’t feel “crazy” is with other patients, who “get it” –

      Reply
  • January 23, 2011 at 2:28 pm
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    Just saw your response to this comment on your post. The best way to get a member of ACR is to check through the ABMS website. You can request information about all board-certified rheumatologists in your geographic area. Only those docs who are Board-Certified will show up in your search. http://www.abms.org/ You will need to create a free account. ABMS is the American Board of Medical Specialties (ABMS), a not-for-profit organization, that assists 24 approved medical specialty boards in the development and use of standards in the ongoing evaluation and certification of physicians. Rheumatology is one of the specialty members of ABMS. ACR usually isn’t going to send out lists of members to patients.
    Yes, there are standards of care, but it is difficult for most patients to determine if those standards are adhered to. It takes a medical or nursing review to determine which standards, if any, were breached.
    Cheerio!
    Elizabeth

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    • January 23, 2011 at 4:24 pm
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      Thank you for this information….I am copying it and will save it for future use….much appreciated!

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  • January 23, 2011 at 8:18 pm
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    If my Rheumatologist did that to me I would find someone else yesterday , that is so sad. Yes she does touch me but not until after I do the montions for her first so as she can she how I do. so sorry for the young lady hope she finds a new doctor. Leti

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  • January 23, 2011 at 8:39 pm
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    I forgot to tell you Kelly that I just found out about you today Jan 23.2011 when I went of the internet you were the first top story and I was so surprised because you never see this anyway I read your story and added you to my facebook and email just order some great t shirts to wear and just love you and I just met you , I was blessed with the disease in 2008 and it was a shock of my life , my dad had it and I work in the medical field and have seen it all and I have always said if I get anything please not R.A. but will it is in the genes and here I am . I watched my poor dad suffer . back then in the 70’s they didn’t have what we have know , I take Humera and do great and will give you details another day but I never and hope it does not want to go through what I went through the first 6months of this until my R.A.drugs kicked in and the flare ups I get latetly have been at a 8 as for as pain is but I have been able to talk my self into a calm state and it realy helps , it’s hard to explain you know mind over matter . anyway so glad I found you and god bless you !! friend for ever !!! Leti Peterson

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  • January 25, 2011 at 9:28 am
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    When I see my rheumatologist it is at least a 45 minute appointment. He first comes in and reviews my history, medications, emotional state and physical state from my perspective. He then steps out of the room while I change in to a gown. He then starts the clinical exam taking my blood pressure even though the nurse has already done it he checks it again. The then listens to my heart and lungs. Checks my thyroid and then begins to check my shoulders, my neck by having me go through a range of motions and he slowly moves down manipulating my joints and watching my face carefully so as not to cause me too much discomfort. He has me try and grip and bend my joints the best I can. He will feel my elbows and gently squeeze the small joints of my hands and fingers. All the time he is rattling off numbers to his assistant indicating inflammation etc. Much like they do at the dentist when they are checking your gums. He will then have me lay down and check the range of motion in my hips and knees bending them several ways. I then sit up and he will check for swelling in my knees and ankles and toes. He will check my reflex. Then he has me stand and walk away from him, walk to him, try to walk on my toes and my heals. He will have me bend over and check my spine. During the whole exam he is talking to me and asking me questions. He will then have me change. (they have a private changing room in each exam room) as I am changing her reviews the notes. When I am dressed we go over what he has looked at and my labs. He then will make suggestions on seeing another dr in the clinic or decide to do additional labs etc. We then discuss a plan. He will then dictate his findings over the phone as I am listening and then pause when he is finished to make sure he covered everything. If I have additional appointments he wants to make like xrays or meet with another doctor I then wait for those appointments and after completing all those I see him again. Otherwise if it is just labs or xrays I am on my way and he or his nurse call me in a few days with the results. If I see him again it is to summarize all the findings from the other drs. if he has a question during the visit he will page the other physicians. I love my clinic. I have periodically tried drs closer to home but it is not the same. The exam has never been so detailed as it is with them. They saved my life literally when I went back to Mayo in 2006 because of that clinical exam and because they refer you to other specialists.

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    • January 25, 2011 at 9:40 pm
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      Wow, thanks for sharing – that’s amazing. How frequently do you have appointments like this?

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    • January 25, 2011 at 10:37 pm
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      This doctor would be a great rheumatology instructor in a med school! Perhaps he should consider doing that job during his retirement years! How lucky the next generation will be to benefit from his teachings!

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  • January 25, 2011 at 4:10 pm
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    My Dr does this to me, also, although he has never told me I could do better. I feel like he listens and if I told him it made me uncomfortable he would stop. he is the ONLY rheumatologist I have seen, so I thought this WAS normal practice!

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    • January 25, 2011 at 9:42 pm
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      Hali, I don’t think there is a norm. Hearing from patients, it seems that there are many ways different docs do exams. 🙂

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  • January 26, 2011 at 2:18 pm
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    Every visit begins with her question to tell about past months and how I’ve been, which joints were showing symptoms,
    My doc moves my joints for me, always warning me to tell her if I feel pain or pressure. She does that because sometimes bones tend to take a wrong position and she can feel it if she moves the leg for me.
    She also presses my joins and ask if it hurts, measures them. Besides that, she listens to my heart every time. She is very sweet and polite, I consider myself to be very lucky. 🙂

    Reply
  • January 31, 2011 at 7:34 pm
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    Hi Maureen,

    I would love to hear your nutritionist’s advice, as I too am on methotrexate and find that food radically affects my pain and inflammation. Please do send me this info. I recommend a potent omega 3, http://www.omegaxl.com, plus a near vegan, gluten and grain free diet for optimum relief.

    Thank you, and I am thankful that you found relief and are off the meds. Sincerely,
    Betsy

    Reply

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