My Quest for Answers to Questions About Rheumatoid Arthritis
PollyAnna wrestling windmills?
A conversation left me stunned yesterday – until I got my PollyAnna on. Now I see that there is good news and bad news. But, I’ll need to back up a bit.
The Quest
Like most people, when I was diagnosed with Rheumatoid Arthritis, I was on my own. I had no idea what “typical” symptoms ought to be or how doctors expected me to describe them. Even though my own grandfather had had RA, I was clueless.
First, I explored the internet for stories from other RA’ers. Next, I went to medical journals. I printed out piles of pages. Then, I went to the library. I know I have read over a dozen Rheumatoid Arthritis books written by rheumatologists and published by reputable sources. Eventually, I joined a couple of RA forums. And I ultimately started following three RA blogs on Health Central.
I learned a lot. However, I got pretty frustrated too. What I read in the books did not usually match up with the experiences of the RA’ers I encountered. That is when I committed my original sin as a patient.
The Confession
I started making a mental list of ways that I believed the doctors to be wrong.
I started noticing journal articles which contradicted specific statements of other well-known sources. Testimonials of patients stood starkly against the picture of Rheumatoid Arthritis painted by the medical community. I scratched my head.
Bear with me one more moment and I will tell you what happened to me yesterday. First, let me specifically state a few of my concerns related to defining and diagnosing Rheumatoid Arthritis. All of these erroneous statements were told me by rheumatologists either in a book or to my face or both.
Wrong things about Rheumatoid Arthritis doctors told me:
- You cannot get RA in every joint.
- You cannot get RA in your spine.
- You cannot get RA in your DIP joints (by your fingernails).
- Your ESR (sed rate) is the most direct reflection of disease activity.
- A “normal” ESR indicates that RA is in remission in spite of reported symptoms or other high labs.
- Rheumatoid Arthritis is primarily a hand disease.
- Visible external swelling is required as evidence of disease activity, damage, or pain.
- The ACR diagnosis guidelines are sufficient to diagnose Rheumatoid Arthritis.
The good news and the bad news
Here is what stunned me yesterday. I had brought some of my questions to the attention of a well-known rheumatologist. His reply was staggering. First, he agreed with me on the merits of every point I made to him. That’s the good news.
However, he repeatedly pointed out that he would not acknowledge that he had ever heard of any rheumatologist anywhere who believed any of the statements which I brought to his attention. He said he does not see a problem. I do not know how to explain that. I have not only read those “facts” in books and heard them directly from rheumatologists, but also had my findings confirmed by daily contact with RA’ers.
Am I tilting at windmills?
Don Quixote part 1, chapter 4: “I don’t let clouds come before my eyes, for I know where the shoe pinches me.”
Recommended reading:
Is there a blood test for Rheumatoid Arthritis? Part 1
Is There a Typical Rheumatoid Arthritis
Palindromic Rheumatism Is Not a Rare Form of Rheumatoid Arthritis
Do you know Dr. Laptop? It’s Ok to Laugh if You Have Rheumatoid Arthritis
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1- I don’t believe you are tilting at windmills.
2- I have an idea that I would like to bounce off of you- could you drop me an email? I assume you can see my email on here when we submit the comments.
Jules:
1- once again wondering if I’ll need a patient protection plan. haha.
2- Email on the way.
I have had RA for 10 years, I know from experience and about 10 doctors how frustrating it can be to get a correct diagnosis and get the care we need and the respect from doctors,family and friends. They want to understand but it is impossible unless they have been there. I am trained as a registered nurse, worked with elderly for 25 years, thought I understood pain, always responded to my patients requests for medications,etc. But until I was hit with RA, I was clueless!!!! Everyone needs to understand that a person does not need to be rail thin and pale gray to be really sick! People with RA have numerous health problems and doctors often even fail to understand. We need to band together and get the message out to the public how devastating this disease is, it takes your life away almost immediately, sometimes it will give you a small glimpse of it back and them will grab it back just when you think your in remission. I’m sorry, but this is the first time I have ever responded to a post and have a lot of anger toward RA. Hope this might help someone else or a family member to understand. Thanks for your website, it is a good, informative site.
I can’t believe how much of my life is and my feelings are being described in these emails ! It’s a scarry place to be when you feel sooo alone ! I’m so sorry for all of you that understand… I know your PAIN !
Jane,
Thank you for the thoughtful comment. You speak for many others. I hear the same things every day. Over and over. For many of us, RA does as you say “take your life almost immediately.” I wish that every person who does not have RA could read your comment – especially every doctor. Also, you mention the respect issue. I have wondered how to even write about this without appearing defensive. However, as we both have said, we must speak out – we are the only ones who know.
Kelly, Jane Robbins again, I read your post on Fifth’s disease, that is what I was diagnosed with in 1999 when my symptom’s first began, it is what has been determined to have started all my disease process. It is very interesting that some doctors say it is not related and some do. I saw an Infectious Disease doctor at a teaching hospital, I live in Texas, and he diagnosed me with Human Parvo immediately, then did the blood tests which came back highly positive, my rheumy that I see now, (who I love), agrees that parvo probably did start the process, I did have the gene for RA, my great-grandmother, grandmother, mother and my brother all had it in their 40’s and I was 42 when it hit, all of a sudden, was fine one day and could not walk the next. Currently I am taking Humira 40 mg.,Plaquenil 6oo mg daily, Prednisone 5mg. daily, Sulfasalazine 2500 mg. daily and pain meds prn. I feel like I should rattle when I walk but at least I can walk now, I was bedfast for about 6 months and then walked with a walker. So, the moral to this story is, don’t give up! If the doctor your seeing does not help, seek another one, there are doctors that care, even if they are few and far between. Thanks again for your informative site, I have enjoyed it so far. Jane
Hi Kelly,
Perhaps it’s a good thing that I’ve NOT read a lot of books on RA. I have been reading journal articles, but not for general RA information.
I’m one of those seronegative patients who before I was finally diagnosed was to the point of crying in pain which caused me the desire to cut my arms off. I didn’t recognize the pain in my toes and ankles as being related.
My rheumatologist examined my joints, looked at the bloodwork results I had brought with me from previous years, and ultrasounded the joints in my hands. She asked what symptoms had been going on years earlier when my SED rate was “slightly elevated” (according to my PCP) at 31 and was tested for RA, thyroid disease, and lupus. Of course, the answer was my hands not feeling “right” and an overwhelming fatigue. She said that if I had come to her then, she probably would have dx RA even without a positive RA factor.
Luckily for me, she doesn’t repeat the incorrect statements you have listed above. And the swollen joints on two fingers of my left hand, which apparently didn’t scream RA to any of my other doctor because they weren’t warm to the touch, well I’m left with a boutonniere deformity.
Lisa
P.S. There’s something trying to reload on your page which is disrupting the flow. Have you added something new lately?
Not tilting against windmills…just confronting a system that is sorely in need of attention. Every wrong thing on your list has happened to me. In fact, I’m sitting here writing this reply and my right thumb DIP joint is killing me!
I don’t know the solution but as we talked about earlier this year, I’m still thinking about some sort of way to compile collective patient information.
Andrew! please forgive me for smiling as I read your words “everything on your list has happened to me.”
It just feels good to know you are not alone.
I would be happy to discuss the other issue when there is time. I am doing what I can – announcement next week I think.
Hey Kelly how goes it? I have had a horrid couple of weeks, pain in limbs is getting serious and I am wearing a leg brace to help me walk…. but enough about me, I was reading up on celebrities who are in constant pain, one of them is Jerry Lewis, I like how he said it
(Jerry Lewis: “Chronic pain is not like any other malady. It is consistent. It is laborious. It is constant. It doesn’t leave you alone. It is the number one reason that we have suicides in this country today.)
He is using a device to control his pain, called a Chronic Pain Relief Medtronics Neurostimulator?? Have you ever heard of this and do you think it could help some of us with RA?? I am always on the read for news to help all of us! Drop me a line if you have heard of this?
Yes, I have heard of folks using stimulators and Tens devices. It seems to be a very individual thing – whether they help. And an implanted device is an extreme step – I think that is usually for back pain that for some reason is inoperable. I have never researched this topic. I’d gather as much info as possible and then ask your doc whether it is an option for you.
I am sorry you are doing so much worse right now. I keep repeating to myself: I have been here before and I came through it… Also helps to know you are in good company. Jerry Lewis is good example.
Kelly, you might be interested in the new diagnostic criteria that were unveiled yesterday at the ACR.