General Practitioners Need Basic Rheumatoid Arthritis Information
Basic Rheumatoid Arthritis information is lacking in too many GP’s
Murphy lurks – looking for a party to crash. (I have ways of dealing with him – read more here.) So, of course my good GP was on extended leave for the last few weeks while I’ve been trying to get every little medical duck in a row before traveling… *She sticks out tongue.*
That’s how I ended up yesterday in the office of a General Practitioner (GP) I’ve never met before. It was a 25 minute office visit, but I want to focus like a laser on the dumb things he said about RA. Please don’t worry about me – I’m not upset about it because he’s not my regular doc. My Good GP is just that: he does a good job of helping to keep me as healthy as possible. Consider this blog as an academic exercise.
A lack of Rheumatoid Arthritis information can lead to some pretty awkward conversations
List of things the GP said about RA:
- “Why did you fail the TNF’s?” He asked this question four different times! I told him that the treatments failed me because they did not relieve my symptoms and my RA continued to progress. He scratched his head.
- “Why don’t you think they worked? What do you mean the RA progressed?”
- “What – you don’t have pain right? You have no deformity. Your hands are not disfigured.”
- “Why don’t you take an anti-depressant or anti-anxiety medicine on a regular basis to deal with this pain instead (of all those TNF’s?)?”
- “You don’t look like you have RA.”
- “Are you seeing a rheumatologist for this?”
- “Why haven’t you taken – what is that…? K- Kiner Kineret…?”
What is the danger of a GP lacking Rheumatoid Arthritis information?
1) Well, pain for one. He roughly examined a few joints out of curiosity. This didn’t relate to the cause of the visit. I told him the joints all hurt, but he scoffed. I’m a veteran at that so, like I said, I’m fine. I’m actually smiling about how little it upset me this time. I know that’s because I already have good care from my Smart Dr. Rheum and the Good GP.
2) Delay in treatment, for another. Just imagine if I had been yet undiagnosed, like so many of us were, for years. Or imagine if I had been newly diagnosed and fearful of treatment like many patients I meet. I would have been pretty discouraged by the time I left.
We once discussed a study about “ignorance of GP’s about RA” published last February in the UK (I can’t find that post tonight. I’ll add your name to the free t-shirt contest (over now; sorry) if you can find the missing post on the blog!) Anyway, here’s what one article said,
“Doctors’ ignorance means that patients with the condition visit a GP on average four times before they get referred to a specialist – while a fifth visit a GP eight or more times before referral. Guidelines state that patients should receive treatment within three months of the first symptoms appearing. But the average wait is nine months – and this has not improved in six years…And they said there was a dangerous lack of public awareness on the symptoms of rheumatoid arthritis, which means people delay seeking help.”
Postblog:Personally, this encounter with yet one more GP who doesn’t “get” RA just makes me more determined to do whatever I can to change this. Some things I will try:
- I will speak the truth in a clinical setting to doctors who don’t believe in the real RA.
- I will not feel defensive about whether my RA is real or painful, but state the facts.
- I will continue to share fiercely but politely with doctors through the blog and social media about the RA patient experience.
Recommended reading:
- Dealing with Murphy’s Law: Old and New Adages for Rheumatoid Arthritis
- True story: Rheumatoid Arthritis Doctors
- 21 Things to Know About Finding a New Rheumatologist / Rheumatoid Arthritis Specialist
- Video: Good Rheumatoid Arthritis Doctors Treat Patients
So well written Kelly..you have touched upon an all too common occurrence…there are far too many GP’s under trained in recognizing or understanding RA. I have also heard many lame statements…
Especially in reference to inflammation markers, sero-negative vs sero-positive status, an all too hyper-focused approach regarding involvement of the hands and wrists, the inabiligy to recognize the pain without swelling
phenomena (which is so very real), and a misunderstanding in general about basic diagnosis of the disease and treatment…
Yesterday I asked my PCP about methotrexate use in the treatment of RA..and she admitted she did not know just where that fit into RA treatment…but she sure has heard of the Biologics..thanks to drug companies…
Anyway…we have a LONG way to go..I am trying to gently educate..and doing my best not to be shocked and reactive but it is a challenge when one is in pain…So we keep fighting…Thanks for all you do!
Thank you Susan. 🙂
I don’t mind gp’s like yours who admit they don’t know, but mixing in some “You-can’t-tell-me-anything-I-don’t-know” arrogance is a deadly brew. The patients can do our best, but they need better info during med school on RA. I have some ideas on how to do that – and think how that might even be able to improve the dismal numbers of rheum students / docs to be! :rainbow:
I agree with you so much…I very much appreciated her admission of not knowing…What concerns me is Docs who insist that they know what they don’t know…I prefer they admit it…It shows that they are WILLING to learn…Since my ER visit she has done a 360 and been very supportive of my visit to the new Rheumy …She repeated…”very good very good…hmmm we need someone top notch here…he will tell us what direction we should be going in…because clearly things are not working” Yay! I find and I am learning to have more compassion for Docs, although it is hard when one is under treated and in pain. They have enormous pressures to see X amount of patients in a day…one right after the other and the bottom line is that things get missed..Corners are cut, which especially ends up hurting the chronically ill patient who needs more detailed care…I have talked to acquaintances that are Docs…and the thought of over sight terrifies them…who is to blame? The current health care system? Managed Care? But it all boils down not to blaming but
NAMING…identifying the issues that prevent diagnosis and proper RA care in the GP practice due to either oversight or lack of knowledge…and RA patients learning to communicate and respectfully demand quality care…
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That GP is one of the many I think. Somewhere on your site you had a link to a nine part series on managing RA in the primary care setting. Although I didn’t like the woman who foolishly said “keep them OFF the internet” in regards to fibromyalgia, a lot of the info was good. I feel if my GP had more knowledge of RA treatment he would have added the CCP antibody test to my first panel and then once the results were in (I’m positive rheum factor and CCP over 250) started me on mtx while I waited for my first appointment with the rheumatologist. This could have saved some valuable time and possibly kept me out of the predicament I’m in now which is cortisol insufficiency.
I actually called the Southwestern Medical Center that produced the series and they sent me the dvds for free. Could you post this link again so I can save it and spread it around? Their are many people over on Daily Strength that are newly dxd. I always like to give them your site in hopes that they have the knowledge necessary when they have a gp encounter like the one you just told us about.
Thanks Kelly
Lisa, Thats so cool. 😀 I also have had the CD a while – haven’t watched much yet. The post where that quotes the woman doc who says that is called Do Doctors Hate Blogs – link here.
That is wonderful to hear about Daily Strength. There are so many sweet people there. I wish I had more hours in my day so I could get over there now & then. Thank you so much for being an ambassador to new patients & also for giving them links to pages here!
Whenever I read posts like this I just feel so THANKFUL for my awesome GP, who ran tests for RA the first time I visited her with my new symptoms and had me referred to a rheumatologist within a week.
Keep fighting the good fight, Kelly. 🙂
Erin, you really did luck out. I convinced hearing from so many patients that the late / long-diagnosis typical with RA is directly related to this problem. Thank you for your encouragement too!!!
Mine did the same Erin. I had ignored the pain in my feet & knees for months thinking it would just go away eventually. What brought me to my GP was an excruciating night of pain in my elbow one night – never felt anything like it and it had me crying most of the night. Anyway – I got in to my GP that morning and she started asking the right questions. Dumb me wouldn’t have thought to offer info about my other pain. Being in shorts, she also noticed that my knees didn’t look right (I hadn’t noticed). She said “you know, I want to get some blood – I suspect you may have RA”. What?? Me?? Sure enough, my blood test came back “abnormal” and she referred me right away to a rheumatologist. I should mention that my GP really isn’t a GP – she’s a nurse practitioner and she’s fantastic! She works in the office of my GP, and I always ask for her. She’s been right on the money on other things.
Oh Kelly! This is almost hysterically funny!!! DUH! is all that I can think in response! Like man, well I don’t know, just wanted to spend the money and give them all a try. And who the heck does he think prescribe or administered the drugs????
I’m glad you have learned to take this kind of ignorance in stride, but it truly is sad that it was conditioned through past experiences. Thanks for the wonderful post you help all of us with!!!!
Shirley: THANK YOU! for seeing it as slyly funny! :rotflol:
This is so very well put and very good account of how some docs are in dealing with ra patients. i have never told this information before as it is something i am not proud to know……. a very good as a whole and well thought of gp in a large practice in a fairly good sized city told me …… *laughing* that many times he sees patients that have been to rhummy and other docs and not been dx as having ra and he tells them they do have ra just to make them feel better and he claims then his patients just love him! humph~ what??? really….. so dxing a person as having ra when actually they have not had the evidence to have the rhummy say they have it just to make them “feel” better? well maybe this is some of the trail as to why there is such a laugh and confusion in some circles about these crazy people that have ra??? dont really know but it out here now and for someone i think there is some checking into to do and a story there. happy investigating!
I’d love to hear more about that, but I wouldn’t know where to look. It would be good to solve the mystery of why part of the RA dx is sometimes “craziness” or hysteria as it says in the literature – I had thought it was 100% due to the fact that the symptoms are not visible and cannot be proven – how could you prove stiffness is real for example? And misconceptions passed down from early theories many years old.
Wow – this does make me very grateful for the good GPs I’ve had! I recently switched to a new PCP/OB/GYN (moved too far away from my old one), and I was rather nervous, because I wasn’t sure how she would be. She seems to actually have a really good handle on RA, and I was able to have a good conversation with her about recommendations on how to handle treatment during pregnancy (looking to the future!). Turns out she recommends the same thing as my Rheumy–good sign! She also seems to really grasp how serious RA can be, and didn’t try to downplay it. She actually told me a cool story about one of her patients who has RA that is very bad and not well controlled – the patient is a farmer, and she still goes out and farms every day (though now needs a fork lift to get up into the tractor)– my doc was in awe of this woman — me too! Very inspirational. We need more docs like that: with knowledge, empathy, inspiration, and hope!
Awesome! Thanks for sharing the story, Dana 😀 Wouldn’t you love to see a photo & story of her life?
This is one reason we met with our congressman to discuss the Arthritis Prevention & Control Act. One issue that is addressed is more training for general doctors -especially pediatricians- but I believe it would encompass all. Sometimes I really think RA/ JA need different names. Names that would maybe help people to understand that this isn’t because you spent too much time biking in the 80’s. I’ve been trying to veer the focus more to the “autoimmune disease associated with Lupus” aspect, because people really don’t think that this is a big deal. It is sad that physicians don’t understand!
Here is another danger: If he/she can’t pronounce these drug names, chances are they don’t know things like how you need to avoid Sulpha’s if you’re using Methotrexate. They may not be aware of a potentially dangerous interaction, which is one of the HUGE reasons that people need to research their own conditions and be their own advocates. It still amazes me how many people have no idea about their meds or conditions. Hopefully the bill will pass the last phase and soon these docs will have the extra training they so desperately need.
Thanks Dee. There’s also the big push coming this month regarding the US medicare cuts for rheumatology payments. I hope to post more on this soon.
Oooh! I hadn’t heard about that. Good to know. I should have added also that my girl wasn’t diagnosed for quite some time because it just simply didn’t occur to them. She had nodules, she had a limp, she was very anxious and quirky, but since she didn’t complain, no one thought about it. Many of her symptoms (until the limp) could be explained away. Now I know that many of her symptoms have been with her since probably 18 months or maybe even earlier, but if you don’t know what to look for…..
🙁 and pain no doubt. This is personal (that docs get educated). I know how you feel – 2 of my kids are deaf & they don’t come with a sign on them – it took me a while to get a diagnosis with the 1st one. The 2nd time, I knew what to look for.
A big hello to Kelly and my RA buddies!
For two years I wore bilateral wrist supports because my RA symptoms were deemed carpal tunnel syndrome. I even got as far as going to an Ortho for a surgery consult! I was crushed my pain couldn’t be solved with a ‘simple’ surgery. I used to work for a local hospital and through my relationships with the doctors, nurses and the other administrative staff I heard a lot of the comments you described. Although I don’t work there anymore I have learned to deal with the uneducated questions and comments (ex. Why don’t you just take some aspirin?)much better than I used to. I really appreciate this article as a reminder that even though my own family are the worse at comments like these I have to remember that they love me and they just don’t understand. It is my job to try to educate them for the next person …and I am really proud to help in that endeavor.
Hi Helen 😀
If you can talk about your RA, then you definitely are part of the solution. I know for many of us that’s still very hard – me included. I just read some stories about Rosalind Russell, a movie star with RA. That stood out again how hard it was to talk about RA & she tried to hide her pain.
This is exactly what im talking about Kelly! Thanks so much for this post! I also just grin and bear it…why wont they educate themselves alittle? So happy to have ur site to help me! Thanks Kelly.
I’ve read a number of blog posts that talk about people’s reactions to people with RA. I read time and time again that people say “but you don’t look sick.” That got me thinking, what is a sick person supposed to look like? Do people with diabetes look sick? Do people with heart disease, high cholesterol or high blood pressure look sick?
Do people think that with RA you wake up one morning with mangled hands and deformed/damaged joints? When you see someone like that, those visible signs are earned through years of pain and suffering. When you see someone like that your heart should break with the knowledge of all they’ve had to endure. Why can’t people be more empathetic, compassionate and caring?
Don’t steal my thunder, RARAP, that’s a blog post I’m working on! 😉 LOL. Just kidding. That is the correct line of thinking – the bottom line I mean.
The “you don’t look sick ” deal is one that annoys me as well. I had someone say to me, oh if you had RA your hands would be deformed like my neighbors, she really has RA. My response was thats why I take these drugs to prevent damage(also my hands were one of the last places to be involved.) One of my good friends on the other hand always knows when I’m bad, but never brings it up unless I do. She treats me like a person, not just a person with RA. I love that.
omg “She REALLY has RA”? Thats a new one. Someone tell all of my joints that I REALLy don’t..
Glad you have a friend who understands like yours does – I have a couple of them and it’s worth so much.
In my case, my GP isn’t a problem. My problem is my gynecologist. Now, I go there for my annual pap tests, etc. of course – nothing related to RA. However, he has always acted “weird” about my RA. When I was first diagnosed, he gave a sneer and said “who told you that?”, as if I had gotten my diagnosis from the mailman or something – or that perhaps it was “all in my head”. Last time I was at his office a couple months ago, he brought up my taking MTX. For some reason, he can’t stand that I’m on MTX. He started shot-gunning questions at me about why I was on it and stuff like that. I was so stunned, I didn’t know what to say. His final response to me was “well, I think you should just stop taking it – do you plan to be on it for the rest of your life? – just something to think about”. I was shocked. My gynecologist – not knowing anything about the background of my RA diagnosis or having EVER spoken to my rheumatologist, recommending that I discontinue my medication. Wow. Obviously, I’m in the market for a new gynecologist. He’s been rather abusive about my condition ever since I was diagnosed and while I ignored it up until now, I’m just tired of it.
Jackie, I’m sorry you had to endure that. I know “just” what you mean. Great joke about the mailman tho. ;D I wish I could send you my gyn. She is an amazing woman – most humble pro-patient doc I’ve ever met. Wish she would teach medical school. Wears jeans & asks patients their opinions. I know finding a new one will be annoying, but in the end, it will probably make you glad you did.
Kelly
No trained DR should ever comment that you don’t look sick.
That just seems to me to be wrong on so many levels.
I went to PT’s, knee specialists, and GP’s before getting referred to a rheumy (Which I suggested). Everyone believed me but admitted that it was beyond them. I was very luckey to have really good people, but even then, it really took a while to narrow down the two types of RA that I have. I like you, hear a lot of stuff that could be annoying if I really paid much attention to it. My GP always remembers to ask me about my RA treatments and takes them into consideration when working on my general health. I guess the message is that we have to be proactive and bold enough to drop a GP if we get a bad feeling, but after we tell them why thier lack of understanding offended us. Hard to do, but necessary sometimes.Good read Kelly.
Phil
Thanks Phil. I don’t know why assertiveness is harder with healthcare. There are some good theories on that in Elizabeth Cohen’s new book, The Empowered Patient. But it’s good advice you give here.
I read posts like this I just feel so THANKFUL for my awesome GP, who ran tests for RA the first time I visited her with my new symptoms and had me referred to a rheumatologist within a week.
Thankfully my GP is wonderful and very knowledgeable on RA. Has been so supportive from day 1.
I wish he could teach in a medical school! But of course, he’s needed where he is. 🙂
I live on Guam, an island where there are no rheumatologists. The nearest one is in the Philippines, about a 3-hour flight away. The next would be in Hawaii, an 8-hour flight. My GP has done the best he could, from what I can tell. I went to see him in April 2010 after having developed chronic pain from the neck down (except for hips). He sent me for blood tests and in May informed me that it appeared I had RA. RF test was negative but CCP was 829 and SedRate was 120. He first put me on MTX and Folic Acid. When my numbers didn’t improve and xray of my knees showed erosion, he included Enbrel into the mix in Oct 2010.
At my latest follow-up in Feb 2011 he recommended I schedule a trip so I can see a rheumatologist since there is none available locally. Since my husband and I share care-giving of his mother who has DAT with his only other sibling on island, a trip seemed out of the question at first. But now it looks like I MIGHT be able to go to the Philippines in June — that’s a flight I will better tolerate.
Since RA is an invisible disease, neither my husband nor his siblings grasp the need for me to see a specialist. They seem to be of the mindset that if I just try harder, I could do more. Even after I informed them of my GP’s recommendation to see a specialist, there was no sense of urgency. My husband actually asked, “Are you saying that your RA is getting worse?” Our adult children — God bless them! — are aware that I am in constant pain and do what they can to help me.
BLESS YOUR HEART! Mary Lou! I’m glad to see you found us. That’s amazing. We have a shortage in the states of rheum doctors but that’s shocking.
It sounds like some problems are the same wherever we are. My children are the ones who “get it” too.
Iam glad that my gp gets me. he asks how i fell insted of poking at me to make me hurt worse. he can look at my fatty fingers even when they arent that bad and say swelling worse this week huh. i adroe him and iam sorry you got a crap gp
I thank God that my GP was smart enough to diagnose me right away with RA. After getting the tests and diagnosis though, it was a wait to get treatment. I had no insurance, so no rheumatologist would see me. Thankfully, my GP was able to call a rheumy friend of his out of the area, and consulted with him. After a year of bureacratic paperwork, I finally got on Enbrel which has saved my life.
A year?! That’s awful. Glad it works though.
I am fortunate that my family practice doctor is great. We’ve seen him for 14 years, he delivered three of my four kids. We drive 27 miles to see him, and while it’s a pain for a strep culture, it’s worth it to us. He explained drugs for RA better than the Rheumy I was seeing and gave possible explaination for the Rheumy’s reluctance to go to more powerful drugs. He gave me more information than the Rheumy ever did. Then he gave me the name of another Rheumy he thought I would do better with. Guess what? I love the new one. She treats me as a person, not a case.
I understand that it is hard for GP’s to know about every condition out there. Let’s face it, it’s hard to be a beginning Neurologist, Nephrologist, Physciatrist, Cardiologist, Opthamologist, Rheumy, Ortho, etc., and know how to treat every thing that could ever show up in your office. But, it’s so important to be willing to understand when your patient needs a specialist and to get them referred out quickly in order to get the best diagnosis and treatment.
I think I will mail this to my former GP. My rheumy could not BELIEVE that she didn’t notice my (visible) symptoms and send me to a rheumy immediately…especially my left wrist, which is still horribly swollen and deformed…when I finally insisted on seeing a specialist, she sent me to an orthopedic surgeon! Thank goodness we got new insurance that allowed me to see a rheumy on my own, though it took almost two years!
Wow, Patty.
I am one of the lucky ones too. I went in to my GP, he ran tests and called me the next day and said they didn’t have all of the results but he didn’t need to see them to know I had RA and he called a Rheum dr. immediately. Both his nurse and my GP dr told me that RA is one of the most painful things he has seen in his office and always asks me if I have enough pain meds. He said RA is the one disease he would never wish on anybody. He is my warm fuzzy dr to counteract my not so warm and fuzzy RA dr. My GP gives me vidodin and my RA dr says tylenol is enough. Doesn’t that seem a bit backward? Just can’t figure out why there is no consistency in the arena of RA. I often wonder why RA got a bad rap with the medical field.
Its so funny Cynde, I’ve seen a half dozen GP’s who are completely ignorant of RA & my one good one who has been learning w/an open mind from me. On Facebook, folks are more comfortable and post a lot of negative experiences. But here on the blog where they feel it’s more public, they are posting mostly postive stories. That’s a learning experience for me.
Of COURSE I’m so glad to hear that your GP gets it. It is one of the most valuable things an RA pateint can find – a good GP once diagnosed. and of course we could be diagnosed & treated earlier if GP’s had some awareness of what it is & didn’t tell patients it’s in their heads or they’re too young to get that…
Your last question is something I’ve spent the last 2 yrs on & will be answered with my book I guess since it’s so complicated. But right now, I think we need to *fix* that dear friend. Your RA doc needs some awareness by the way.. tylenol is not even antiinflammatory…
Not only is Tylenol (generic: acetominophen) not an anti-inflammatory, it is also harmful to the liver when taking large doses and/or for extended periods – as a person might when trying to deal with RA pain. This is especially important since many of the drugs used to treat RA also can cause liver damage. Advil (Ibuprofen) at least reduces inflammation, although it too can be damaging to the liver.
Yes, we discussed tylenol dangers & new restrictions from the FDA recently. Good points to bring up! More reasons to be surprised a rheum doc would say that.
The thing that seemed so strange to me when my RA dr. told me to take tylenol is that he was training an intern at the time. I didn’t have a huge amount of “visable” painful joints but I told him I was hurting. That is when he said to take tylenol. I agree with the liver thing and tylenol because I am also on the heavy hitter meds that effect my liver. I really didn’t even listen to him since my GP gives me my pain meds. He actually has never once asked me if I needed pain meds. Just such inconsistency in the medical field.
It is a common inconsistency, Cynde. But I hope we can change that since RA is known to be one of the most painful conditions that exists and since it’s uncurable & we live w/this pain daily for the length of our lives, which studies like this one are finally confirming…
I can’t tell you what an effect it has on me to hear you say you don’t have “visible painful joints” – no pain is visible. This really upsets me. As you know I hear it from patients and parents of little patients every day. It is plain foolishness. RA pain is not visible. The only way we can know it is to ask the patient. I don’t feel the rheum doctor is just irresponsible for recommending tylenol for that kind of chronic & intense pain – I also think it sounds cruel.
I’ll admit to you that, as I’ve written elsewhere, no doctor has ever asked me how much pain I have or offered me pain medicine. I have had to ask for it firmly. It took a long time before I knew how to do that or that there was more that could be done to make me more comfortable. This whole situation motivates me to no end. I call it rocket fuel & go on, knowing I’ll never give up until we see changes.
Wow, thank goodness you were not really sick. There are good docs and bad, one solution is pay for performance.Accountability!!! Tort reform (requirements to file a law suit) has not helped only made it possible for bad doc to continue. Fox in the hen house– Medical Boards are over seen by docs and we know that they are bias, so filing a complaint to them is spitting in the wind. I know only that one MUST do their home work and check out the doc and find if they have what it takes for you to be their patient . Thank you for your efforts , you have and will make a difference.
This past weekend my hubby and I went out of state for the first time in years. When we arrived at our destination it was cold and rainy – not a good sign. Next morning we did a lot of walking and surprise, surprise, I ended up in quite a lot of pain and discomfort. Also surprising was the fact that I had somehow packed all of my meds except the prednisone for when a major flare up occurs and naproxin sodium to the max does not touch it. By mid day I could barely stand it any longer and went on a search for an urgent care center, which I found nearby. They took me in pretty quickly, but the Dr. I saw looked at me as if I was a drug addict when I asked her to write me a script for prednisone and a pain killer. She questioned that I had RA since my hands were not terribly affected at the time, the pain was mostly in my lower back and hips and in both feet – and believe me, it was excrutiating by then. She did finaly notice the RA nodule on my right middle finger, but did ask what it was at first, and finally agreed to write me a script for what I needed. I was questioned several times about why I did not have prednisone with me – hello, I somehow missed packing it, of all things. I was also questioned about why I did not have any metotrexate with me – hello again, it’s taken only once a week – which I had done a few days before. I was questioned as to why I needed a pain pill of some sort – hello, I had already maxed out on the amount of naproxin sodium I could take in one day and IT HURT MORE THAN I COULD STAND! Hello, Dr. GP, please read up on RA and get some information so that next time someone with RA needs help you won’t sound like an undereducated provider of medical services that leave much to be desired. Thank you so much. RA is very real and when it flares up, the pain is severe, in case you didn’t know, Dr. GP. Please learn everything you can about it because you never know when a new case of RA might walk into your office in the form of a person. Thanks!
Indeed!
Kelly- I don’t know how or what venues or forums we can access- but over the years in reading posts such as the ones on this site and others- it is so clear that the medical profession, the biologic companies and other pharma companies – all gloss over or ignore the fact that this disease (and others that accompany it) do cause alot of pain. I know for myself that had I not been pro-active I would be in worse shape. Not just from the pain, but from the progression of this disease. Having grown up with Juvenille Arthritis- I know often times I just slog through it all.
I do have a GP that gets it. Many times when I want to decrease the pain meds because they make my brain foggy- he cautions me- reminds me of what it is to live daily without the pain meds. I don’t know if I am resistant at times for fear of more problems resulting from all the medications or because maybe I am just doing pretty good for a month.
Often I wonder if sometimes I get tired of being in pain, tired of being sick, fed up with not being productive- not having control of my mind and body pre-RA. There are times when I have thought of taking out a full page ad in a medical mag or newspaper “screaming to the rooftops” This disease stinks- there is no cure- there is no remedy- there is no quality of life……and on and on and on.
It is so taxing spending month after month which turns into years- searching, looking for answers with this disease- only to once again realize- ok they made a few discoveries, getting excited- holding my breath- to discover oh another trial in progress- 10 more years before real proof is found…
Then I catch myself- my son battles with Hodgkins- cancer the evilest vilest disease there is. I watch, I listen, I see his struggle and then I feel ashamed. I realize that we might be a bit spoiled with all the technical and medical advances since the 70’s and still no cure for Cancer, for MS, for Diabetes, and the list goes on.
I think this disease brings us to our knees so quickly- with no warning that emotionally- at times we are not able to keep up. It changes our whole way of life overnight. We go from type A personalities to an F minus in everything. I mean having to ask your child to help you zip or unzip your pants..you all know…Why oh why – what oh what can we do- say to get the medical profession to recognize that pain is more debilitating than the disease?
I applaud you all for not giving up- for going forward- for participating in studies, forums, blogging, posting and on occassion education our own families and each other. My hat is off to you all. You are all part of this journey. Thank you.
My old GP was not very good; no referral despite my mom having RA and my physical/visual symptoms. He even insinuated that I “imagined” the anti-ccp test because he’d never heard of it! Luckily he cancelled my next appt with him to try for the referral and I ended up seeing his partner, who actually LISTENED and referred me to a rheummy. Turns out that my HMO doesn’t carry the anti-ccp test, but this doctor actually searched the database when I asked if he could order it.
Long story short, what was a bump in the road turned into a blessing. I switched my primary care over to my old doc’s partner.
I know 1st hand that many gp’s cannot even dx or tell u what ra actually is may of them mix it all up with the dx of oa. i have a wonder gp that is very smart and caring and seems to be very knowledgable about ra and i feel so very fortunate to have him as my doc! but please beware many many gp’s have no real knowledge of ra and will end up trying to medicate and treat it in all the wrong ways and i have seen many times they treat oa like ra would be treated i honestly for the life do no understand why this is so hard for some of them plus they let their egos get in the way and dont listen or search for truth in what their doing.
Two interesting (at least to me) comments on educating the GPs and the general public. Hey, GP and GP! LOL
Anyway, my PC doc was the first one to diagnose me, purely by accident. He orders complete blood work on every new patent…and I mean “complete”! When I went back for the results, he was practically jumping for joy. He said, “Trish you have RA! This is great news. YOur life is going to change drastically once you get on some RA meds. You’ll be your old self again!” I left his office thrilled. First because I finally found out the reason for all my pain and fatigue. And Second because my life was going to be back to normal! Hooray! For about 2 weeks I was so grateful. Then I started doing research on line. My bubble burst. But I’m still grateful to my GP who happened to diagnose me correctly!
Second comment which I found very amusing. Tell me if you think its amusing to you too. Friday I posted a picture of my RA feet on Facebook. I titled it, My RA Feet. I got a ton of supportive comments from fellow warriors. But today I got a comment on my FB wall from my daughter in law. She said, “Were those your feet in the Friday pic or someone with RA?” Is this as funny to you as it was to me?
Trish – that is the funny of the day! What on EARTH did you say to her?
I guess I was one of the fortunate ones to have a good dr. at this time. I have a friend with RA, so when I started having symptoms in my upper body about 2 months ago, I had an inkling what was going on. Having been told joint problems in my knees and feet were all due to obesity by previous dr’s for years, I did my research. I got into my new GP in about 2 weeks and had been reading this and other sites, so was very clear in describing my symptoms. After 10 minutes she asked me if I had ever been tested for lupus or RA, and ordered a number of tests and a hand xray. My sed rate was slightly high, and the other tests were all normal, but she referred me to a rheumy anyway. Had my 1st appt last week and was told he is pretty sure it is RA, but he ordered some additional tests to rule out Lyme disease, parvovirus, etc. Going again next week and hope he’ll officially diagnose me so I can start meds other than anti-infl. and painkiller.
Good luck with treatment Melissa. I’m glad you were diagnosed quickly – and thanks for sharing. It shows that it CAN happen!! 🙂
We always here about new meds and how much RA meds have developed over recent years; why isn’t awareness following? At least for docs…
All I can say is we will change it, Michael. I’ve spend so much time trying to figure out why, I’m starting to move on to HOW to change it. Like going to speak at med schools & dr conferences… and supporting each other to speak the truth when we can… facing down the media when they lie about RA..
hi all i just wanted to say that years ago i took my daughter for a check-up at our physicians office something was bothering her so we went. during HER examination the doc a young one asked me if he could look at my hands sure enough he says ” id like to make a referal to a rheumotolgist !!!!! thanks doc you did me a great service.
I would love to see a list submitted from patients on their experiences of how painful RA is and what they take to relieve their pain and if they feel their pain is mismanaged. I could then take this to my GP or Rhueumy and show him some real-life examples.
I feel like I would be more armed to advocate for my pain control so that I may have quality of life.
That’s true Theresa. There have been many many comments on various posts on this blog already demonstrate that. But I’ll think about what we can do next.
I am having the same problem of finding a GP or Intermal Medicine Dr that understands what RA is about and all the possible side effects I may have to deal with. How can I find a good one in my area? Any suggestions would be appreciated.
Hi Dana, The best way to find a dr is to ask your friends or ask any other drs you know that you do like. Tell them you’re looking for someone who knows about RA or who can learn about taking care of RA patients because they are a “listener” type person. “Dismissive” types are the worst since RA symptoms & problems tend to be invisible and heterogeneous. My own GP did not know much about RA but I’ve stayed there for 5 yrs since they are learning more about RA as we go & because he doesn’t ever act dismissive; instead they try hard to make sure I’m treated quickly for infections, etc. We DO want to teach the GP’s more about RA, but a GP with a good attitude/ open mind can still very helpful. One more idea, try to find a dr who likes the internet or reads new research – then s/he can be LEARNING about your side effect issues, etc & how to help you. Drs who are still learning are the best.
Hi, I’m newly diagnosed and the most dismissive doctor I saw was actually the first Rheumy I was referred to. The first GP I saw about the pain in my hands immediately said she thought it was RA, had the blood tests run and sent me to a Rheumy. The first Rheumy kept saying she thought it was my weight, but then would follow that up with “but your hands aren’t weight bearing so I don’t really know”. She very roughly poked and grabbed at my joints and said she didn’t see any swelling at that moment so it’s not RA. Naturally the very next day my hands swelled. She sent me for an MRI of my hands, but I had only been having the pain in my hands for about 3 months at that point and nothing showed up. I’m seronegative, neg anti-CCP, but elevated SedRate and CRP. She didn’t do anything. Dismissed me without even a follow-up appointment or a prescription for an anti-inflammatory. After several months went by, and a short move to the other side of our metro area, I saw a different GP who knows very little about RA, but admitted that he didn’t know, gave me Celebrex samples and sent me to a different Rheumy, who happened to come highly recommended. The second Rheumy very gently examined all of my joints (as in the months since the first appointments, it had spread to everywhere), never even mentioned my weight, looked at my first blood tests from months before and said that he’s quite certain that it’s RA. He redid blood tests, but said that even if I was still seronegative we will start meds with my follow-up appointment. I’m so thankful to have found such a wonderful doctor early on, especially after the first doctor who dismissed me because I’m seronegative and overweight after having 3 children. I found your website a few days ago and have learned so much more after reading through many of the posts. Also, after reading through many onset stories, I think that my shoulder joint pain that I’ve had for nearly 2 years and came on suddenly when my youngest child was just 3 weeks old, may have been the beginning of my disease and it only started in my hands after many months of shoulder pain. The source of it was always a mystery, as I hadn’t injured it, but my dr and phys therapist thought I must’ve injured it without realizing it thanks to the pregnancy hormones loosening everything up. So I’ll be mentioning that to my new doctor at my next appointment and see what he thinks. Thank you so much for all the hard work you put into this website and all the other work you do advocating for us RA patients. You’re very much appreciated.
Hi Karra,
I’m so glad you found a good doctor now so you can start treatment. Hopefully, you’ll respond quickly! Thanks for posting!
This is so frustrating two sets of blood work, RA symptoms nodules rash and simultanious joint pain and all the GP is concerned about is my cholesterol and sugar levels. Has already prescribed Mobic without even giving me a diagnosis. Have picked up meds yet. On and off joint pain and still no relief. Taking 800mg of ibuprofen to stave off the pain.
Hi Lorrie, I hope you’ll be able to get answers soon. The reason the GP is concerned about those tests may be that he knows more about those indicators. Most GP’s aren’t very informed about RA, but it seems he/she does believe you since you were prescribed Mobic. If the 800mg of ibuprofen is what you’re taking (same as what I take), then I hope the Mobic helps your pain – it didn’t help mine & I always came back to the ibu. There are studies that show people prefer ibu – that it’s more effective.