20 Essential Facts About My Own Rheumatoid Arthritis No Doctor Ever Asked Me | Rheumatoid Arthritis Warrior

20 Essential Facts About My Own Rheumatoid Arthritis No Doctor Ever Asked Me

Essential Rheumatoid Arthritis facts only you could know

Last month, we talked about 10 Essential Facts About Rheumatoid Arthritis No Doctor Ever Told Me. We were talking about some essential RA facts of life that many RA patients have to figure out on our own. Let’s look at another angle: What about some truly essential facts on Rheumatoid Arthritis your doctors need to ask you? These facts about your own RA might be critical to your diagnosis, treatment, or prognosis.

  1. What are the symptoms of your Rheumatoid Arthritis? What is the most bothersome symptom?
  2. Where does it hurt?
  3. Do you have fevers?
  4. Are you able to manage to take care of yourself?
  5. Can you do your regular work?
  6. Are you able to eat well? Have you lost weight?
  7. Do you have a family history of heart disease?
  8. Do you have any other auto-immune diagnoses? Co-morbidities?
  9. When / how did your symptoms start?
  10. Do you have a family history of Rheumatoid Arthritis?
  11. Do you have problems with your voice? (larynx) Or trouble breathing?
  12. Are you having side effects from treatments? Would you like to change them?
  13. Do you ever have a rash? Or flushing? Or sores? Or damaged fingernails…?
  14. Do your eyes bother you?
  15. Have you had any Rheumatoid nodules?
  16. Do you have fatigue?
  17. Are your joints weak or unstable? Do they make a lot of noise?

facts on rheumatoid arthritis

Bonus! 3 essential questions about my own Rheumatoid Arthritis: These questions are not on the above list because they were finally asked by my current doc:

     18. Are you depressed? How are you coping with the pain and disability?
     19. Are you taking your medication?
     20. Is the treatment helping you?

Shouldn’t those facts about my Rheumatoid Arthritis be shared with the doctor?

Usually, I end up telling doctors something that I want them to know. Most of the time, I keep it as short as possible in an effort to not irritate them. With a former rheum doctor, I mentioned some things from that list and was met with scoffing. I thought maybe it was just me until I met another patient of the same doctor who told me the doctor scoffed!

Do you have any important facts about your own Rheumatoid Arthritis that you think your doctor needs to know? Only you would know. I don’t know about you, but I’m going to read the post on Patient Assertiveness again & the awesome advice in the comments.

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/

31 thoughts on “20 Essential Facts About My Own Rheumatoid Arthritis No Doctor Ever Asked Me

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  • August 5, 2010 at 9:21 am
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    you should make this a PDF file so we can print it off and take it to the doc with us as a reminder. Thank you for everything.

    Reply
    • August 5, 2010 at 9:27 am
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      Hi Ina, I haven’t made any of the posts a pdf before, but I have printed them. Can you try to see if you can Print Screen to see if that works?

      Reply
  • August 5, 2010 at 10:41 am
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    My doctor as well as his staff ask all of these questions. I also have Fibromyalgia and severe neuropathy. Has there been any research in the connection of RA patients maintaining a Gluten Free diet as well as MSG free diet helpng RA patients. I have elimated both in my diet now for 4 days and besides dropping a pound a day my pain seems less. I’m also Diabetic and have heart disease. I’m still experiencing stomach problems but the seem to be better each day. My blood sugar has improved also. I understand you must be on the diet at least a week to notice a big difference but I have not taken pain meds in the 4 days. That’s a big plus for me. I eat vegetables, fruit and rice products. I’m looking for more products that are gluten free.

    Reply
    • August 5, 2010 at 12:12 pm
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      Hi Judy, I’m sorry you are dealing with so much. I’m glad the new diet is helping. As far as RA, the research I’ve read says that dietary changes help temporarily. They are studying to find out why. There are some posts on the blog about nutrition – look at the Tags list dropdown & click on Diet & Rheumatoid Arthritis. We don’t have any Gluten free lists, but I know there are many out there.

      Reply
    • August 5, 2010 at 9:42 pm
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      Hi Judy, I was on a gluten free diet for the 4 months prior to my diagnosis with RA. It did not relieve my symptoms, but you may be different. I found celiac.com very helpful. They have very extensive lists. Hope it helps you.

      Reply
      • April 15, 2011 at 9:16 am
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        I haven’t attempted gluten free yet – but celiac.com has great lists of gluten free foods and can point you to gluten free meds as well – great site – and they have a forum too where you can ask questions! Good luck!

        Reply
  • August 5, 2010 at 11:18 am
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    I have an awesome doc and she does ask a lot of questions but not all of the ones you have here. I even fill out a questionnaire every time I go in that is quite detailed. The voice box and fingernails have never been mentioned (but she does look at my hands) and I don’t remember any questions about heart disease but she may have asked that on my first consult.
    Interestingly, I do get a phone call every month from a nurse working for Humira. The nurse asks almost every one of your questions and offers advice on dealing with side effects of the medication and on every day living with RA. I’m pretty impressed with them.

    Reply
    • August 5, 2010 at 12:15 pm
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      I’m glad your doc is getting so much input from you. That is a good sign that you are getting good care. The Humira nurses sound great – wonder if that’s new? They never called me when I took it for a couple years?

      Reply
  • August 5, 2010 at 3:13 pm
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    No wonder you’re so down on doctors! That’s basic information the doctor should be getting first thing. The vast majority of that information is asked on the paperwork both my rheumys mail to new patients. Not sure how a doctor can diagnose or treat someone without a history. I’m glad you found someone better.

    Reply
  • August 5, 2010 at 10:48 pm
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    Hey Kelly, great post! I’m taking this and a couple others to my new rheumy appt later this month…
    Regarding the eyes, what symptoms are associated with RA? I have trouble with my eyes – recently my left eye has been going out of focus (like a double vision). I did have the same contact prescription for both eyes for years, now I have a way stronger prescription for that left eye. Also, I have sort of a blinking problem – which I’ve just chalked up to nerves in the past, but now with the vision thing…I’m wondering if it isn’t something related to RA. I haven’t been able to find any good info about RA and the eyes, and my old rheumy didn’t even look at them – she just told me to talk to my dr. about an anti-depressant (thinking the blinking is just due to nerves I guess?). Any input would be most welcome.

    Reply
    • August 5, 2010 at 11:42 pm
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      I went to get an eye link – you can google Rheum. Arthrti. Eyes to find more. http://blogs.webmd.com/eye-on-vision/2008/06/beyond-joints-eye-dangers-in-rheumatoid.html

      The most common RA eye issue is dry eyes. Eyes could also be inflamed w/ various dx depending on what part is inflamed. Uveitis is one of them I hear a lot. & If you take Plaquenil, they have to check for damage from the med.BAsically the bottom line is RA pts should see a good ophthamologist at least 1ce a yr. Blinking could be stress or dry eye or something else. Good luck w/ the rheum doc.

      Reply
  • August 7, 2010 at 2:40 am
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    My doctor was pretty on top of it, he asked all these questions at my first visit. At each following appointment I filled out a questionnaire that covered all these, except family history. There were also 15 questions on day to day function, such as “are you able to manage buttons and zippers”? However, the good doctor was not all good news. When examining me on follow-ups, he only checked my fingers for swelling and pain. Since when is this just a hand disease? I told him about other joints that were swollen and tender and he never gave them a look. He relied too heavily on blood tests (ESR,CRP) for disease activity and did not trust my insight when it didn’t match up. Why did he ask me the 15 questions? After obtaining copies of my records from him, I found many discrepancies and outright untruths. He claimed to do a tender point check for FMS. I scored 18 of 18 tender points positive, when indeed the test was never done. He was good in many ways, but the bad was unacceptable. I could go on and on…but my point is, we must be proactive patients and find a doctor we can trust and mesh with personality wise. Only then can we get the care we are looking for.

    There are many excellent posts here on this subject. There are stories of unacceptable care by doctors, but they are balanced by good experiences too. Most of us have been though both. What Kelly has shown us will indeed improve our chances of having good relations with our doctors.

    Thanks Kelly for showing me how to be a proactive patient, with step by step instructions, which I needed, lol. Also for the info. on what to look for in a doctor that’s right for me. Thanks for being honest about the good and the bad and showing me how to deal with this disease effectively. The doctors will no doubt appreciate an informed patient.

    Reply
  • August 8, 2010 at 1:09 pm
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    I’m so blessed to have a Rheumie that asks those questions and more! She always takes her time with me and makes sure I understand everything. I love the woman! Makes having RA easier when you have a Dr that you like and trust.

    Reply
    • August 8, 2010 at 1:58 pm
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      I can imagine it would! Let’s hope for more like her!! :yes:

      Reply
  • August 29, 2010 at 6:37 am
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    I have wanted to write here for days but have lurched between sadness, anger, despair and outrage after speaking to my Rheummy on Friday pm. So much so that I haven’t been able until now to focus enough to write. I’m still stunned at what he said to me to cause this reaction in me. Nobody would expect to hear this from a so called experienced Rheumatologist (he is a supposed well known Rhemmy of many years).

    What was his coment – “You’ll be back at work soon – you’ll be CURED in a month or two. How are you going with the MXT?” Excuse me? I’ll just fill you in on the background.

    After being diagnosed in April 09 with a positive RF, positive Anti CCP, high CRP and high ESR, my Rheummy started me on Prednisone and Sulphasalazine – my symptoms made a minor improvement along with a slight drop in CRP and ESR but not for long. I was impressed at my 1st consult that he had managed to link a lot of my symptoms from quite some time ago in a short space of time. Though there was a lot he didn’t tell me too – which thanks to you and your members I am now even more informed about!!!

    Around the same time as my RA diagnosis, anaemia became a problem and my liver and spleen enlarged. Concurrently my Rheummy wanted me on MXT but my gastro did a diagnostic laparoscopy and liver biopsy and said it would be DANGEROUS for me to take MXT. This was passed on by my gastro in a letter to my Rheummy and GP – my mistake was to not take a copy of this letter to my Rheummy as he denied recieving it at my next visit. However strangely enough, he wrote to my GP with the same Gastros name included(which I didn’t give him) saying I had decided not to take the MXT (making it sound like I had just refused to take it on a whim)!! I am happy to take responsibility for following my gastros advice – I figured that without my liver I needn’t worry about my RA!!

    Instead I got Leflunomide – so far it has done nothing apart from a 2 point drop in CRP and ESR the 2nd month, which has since climbed back up even higher along with my LFTs.
    My last 2 visits – my rheummy asks how the MXT is going. Happened to be the only real remark he made at my last visit encouraging me to seek another Rheummy. Patricia F from here and ur FB page kindly messaged me with the name of her Rheummy when I asked on your FB page a while ago (a big thank you to Patricia too) which I am in the process of following up.

    However, because of my inablity to work, here in Oz, you can apply for access to your pension fund if you are ‘permanently disabled and unlikely to work in the area for which you are suitably trained’ but need a letter/certificate from your GP and a Specialist. As I have degenerative disc disease, diabetes and of course RA – my GP wrote an extensive letter and I needed one from my Rheummy.
    I already had a report from 2004 from a Ortho Specialist saying then that I was in the ‘almost severely disabled category’ this was before RA, but I was determined to continue working as I loved my job and was a little bit stubborn. RA has tipped me over the edge – re work I mean.
    Now being single and not having been able to work for 18 months, I am in danger of losing my house etc which is not something I find easy to write or even think about. I also hoped for a long time that I may go into remission and didn’t want to just ‘give up work’ at diagnosis.
    It would also of course be innappropriate to go to a new Rheummy and say ‘Hi can you just write me a certificate’, my 2004 letter is too old and I have moved a long distance away since then.

    So back to my conversation – being totally honest – if I had not needed this certificate from him I would have spoken my mind (I would like to think that but am not sure given how I felt) Instead, I said to him nearly in tears ‘I’m worse than when I saw you last – at this time there’s about 3 days out of 7 that I can’t even get out of bed. My knees and toes are swollen and terribly painful and my bloods taken this week – are even higher again’. He asked AGAIN about the MXT and I went throught the story again!!! He asked for a letter from my gastro which I will certainly get and I told him that the Gastro was reviewing me in Sept. I also told him I see my GP on Wed and will fax the same letter to him from there as well. Like I’ve made it up?????

    Maybe I’m overeacting – as I’m in desperate need, but I’m still stunned that a Rheummy would even say in jest that he would have me cured shortly. It’s so not funny and I feel so upset that he would be so – I don’t even know the word. I know that I have a very healthy sense of humour and I am usually the first person to laugh at myself (which is a godsend). I’m not imagining my deterioration and as I said to this Rhemmy – ‘I’m an RN – I can’t even care for myself at the moment never mind anyone else. I can’t even make plans as I literally have to see how I am day to day.’

    The more positive part of this is that he was quite willing to write the certificate – if you can beleive it!!
    However, I’m not going to feel relaxed until I see this.

    This post sounds bizarre and disjointed – I know. I’ve thought about all the mixed feelings I have and the best way I can put it is I feel so sad, upset, disappointed, distressed and I guess even despairing. To cap it all – shortly after my conversation with this Rheummy – a flare started in my left shoulder (so painful I couldn’t touch it).

    I’m so glad that this site is here and I just hope that you can understand my feelings about this whole scenario. I will address this and soon. Even though this interaction upset me – it also makes me concerned about other patients that he has because I wonder about his knowledge/ability and even mental processes.

    Thank you so much for being here and for allowing me to express this frustration.

    Reply
  • April 15, 2011 at 9:11 am
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    Hi, Just saw under #13 on this list that you talk about damaged fingernails. This is the first I’ve heard about my problem being a part of my RA. Is there a website where this is talked about? Really love this site. Thanks

    Reply
    • April 15, 2011 at 12:15 pm
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      I’ve started a problem with my fingernails, too. I know in the long run, fingernails are not a big deal, and I thought it must be side effect of the meds, but maybe it’s just another symptom of RA? Mine just keep peeling apart, they’ve never been like this before.

      Reply
    • April 15, 2011 at 9:12 pm
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      Some reasons this is mentioned in the list on # 13: Fingernails are often affected with Psoriatic arthritis and diagnoses are sometimes changed between this and RA. There are also other things that can show in fingernails such as fungal infection (a danger on immune suppressing drugs) or vasculitis which affects some RA patients — just as some examples.
      If you are worried about something you’ve seen on your fingernails (or anything), I’d tell your docs and try to get a picture in case it gets better before they see it.

      Reply
  • April 15, 2011 at 9:18 am
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    How about dental issues? Does it take longer to heal from any procedure? That is something my regular dentist didn’t bring up, whether from lack of knowledge or lack of caring. But the periodontist I have to see now is well aware of. If your rheumatologist could make you aware of possible dental issues with RA, would you be more concientious about your dental hygiene and see your dentist more often?

    Reply
    • April 15, 2011 at 9:13 pm
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      This is a good point – I’ve not read it in any literature, but I’ve heard it from several patients.

      Reply
  • April 15, 2011 at 2:09 pm
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    since 1986 i have had rheumatiod arthritis and it started out in a big way, frist dr i saw said you didn’t get it all over my feet hurt so bad and it went from knees to shoulders and hands i worked as a nurse, i looked for everything that was on this ,finally i had to quit work go disability, i was dx with severe ra, i have been on all new biologicals they have they work for awhile and then i get and infection, but what gets me is i have to fight the dr. i told him that methrate has riuned my lungs, finally i won no more ,methrate. but have to fight for the right care, now i am in the mind set that the drug companies do not want a drug that will help ra but all of them have bad side affects. sorry about being so neg. but my hands are deformed, my elbows can’t straighten out, feey are going south, i take care of my self but geeting help for things like hygene you can’t get unless you been in the hospital and thats for a week or two i have fought for care and its a losing battle but i won’t stop i will die fighting, oh i have a promblem with my diasyilic left heart now so if its not one thing its another,humor is my side kick

    Reply
    • April 15, 2011 at 9:34 pm
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      I’m sorry you’ve had such a hard time and have to worry about your heart and lungs too – RA is so cruel. I like how you said, “I won’t stop I will die fighting.” – I have said that too – we have to keep fignting for what we need. It’s all we can do.

      Reply
  • April 15, 2011 at 2:21 pm
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    I apparently struck gold when I was sent to a rheumatologist, for my doctor asks all of these questions plus many more on every visit ( currently at every 4 months ) and has me fill out a complete 2 page questionaire dealing with not only the 20 questions, but eye dryness, vision changes, dental problems, digestive and urinary problems etc…He also wants to know where and how much pain in each area on a scale of 1-10 and then gives me options, and asks my input as to what I think we should do with my treatment. He also has a new med student with him almost every visit, so hopefully there is a whole new batch of thorough caring rheumys on the way up. I told him that since I was no longer able to work, it was going to become my goal to make as many people as possible understand RA and the difference between it and osteoarthritis. He told me that if I needed assistance in the pursuit of that goal, to let him know if he could help. Maybe I got lucky with my doctor, but I couldnt ask for a more caring, knowledgeable and compassionate one than I have.

    Reply
    • April 15, 2011 at 9:27 pm
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      Mark, thanks for taking time to comment about a great doctor. It gives all of us hoe that we’ll find one!

      Reply
  • April 15, 2011 at 8:08 pm
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    kelly , all these questions you have posted I answered when I first went to my Rheum 3 years ago and was put on my trail of mxt and Humira and for a year , first every week for 3 month then every 2 weeks for 3months and so on until my year was up and I had to anweres all this question everytime I went . Then since I do good on both meds I see here every 6months but I fell out the questioner and then we go over it together so I truly I’m blessed Leti

    Reply
  • July 7, 2011 at 4:07 pm
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    I thought this was great. However, I have had RA for 10 yrs. & live alone & take all the meds., etc. But Iam now having trouble getting out of bed. I can’t bring up my back and my hands cannot support me nor can I swing my legs off the side.

    I am thinking of getting a remote control mattress where the back comes up & a trapeze bar( a $ 1000. investment). But I’m hoping for other suggestions (hopefully less costly). Thank you.

    Reply
    • July 7, 2011 at 9:15 pm
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      Sorry to hear it. which part of you is causing the worst problem getting out of bed? back or a sacroilliac joints?
      Don’t know if it will help, but here’s how I was taught to do it with back injuries: Get close to edge of bed. Roll myself onto my side. Slowly use gravity to drop my feet to the floor as I roll off into a standing position.

      Reply
  • February 28, 2012 at 8:02 am
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    Good advice. Patients need to be their own advocates. There is a lot of misinformation out there in the public sector as well as among the medical community. RA is a very complex disease and symptoms can overlap with other conditions. This disease needs a good primary care doctor, rheumatologist, and other specialists as needed, depending on the particulars of disease manifestation.

    Reply
  • July 30, 2012 at 6:59 pm
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    They should ask if your jaw is stiff or makes noise when chewing. Mine does, and it’s becoming a problem because chewing is limited to straight up and down, relation is difficult and tiresome.

    Reply

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