Inadequate & stupid? No, just a victim of someone’s training
I don’t know where I’ll find the courage to write this. Some stories – my own or others’ – I’ve saved for a book (I’m working on a couple). At first I think, what will happen if I tell this? Then I realize it must be told, because it’s not my story – it’s the story of too many people.
Last night we got home from an appointment and I could barely hold back tears. The comment from Nancy C was waiting for me. (I’d approved comments from the phone, but hadn’t read them). After I read it, I had a good cry too.
I just came back from my visit to my rheumy… I came away very discouraged, feeling like a hypocrite, a big baby and a complainer. I had a list of questions for the doc that were a concern to me, i.e., I have stabbing pains – her answer that cannot be caused by the RA. I have tendons that will spasm until I am in tears, again that wouldn’t be caused by the RA. I have pain in my hips until I can’t walk at times, again that wouldn’t be caused by the RA. Doc told me the only joints that the RA would cause pain in is the small joints of the hands and feet. I got so discouraged that I just gave up on my list of questions. I was on Humira and three months ago she changed me to Simponi. I told her today that I was doing better on the Humira. She said she didn’t see any sense in changing me back to Humira even though the Simponi seems to “run out” in about 2 1/2 weeks, 1 week and a half before my next injection.
I am so thankful for this site. At least I can read other’s experiences and not feel so totally inadequate and stupid. Thanks for letting me vent. I’ll go have a good cry and then tomorrow will be another day.
Thank you Kelly for all the work you do to fight for all of us! Love and Prayers to you
Inadequate and stupid? Nothing could be further from the truth. How is any of this her fault? Of course it’s not. You can do your best and still not get good answers if the person doesn’t know any better. Even if the person is a doctor. There, I said it.
Why do we always feel like it’s our fault?
There is so much pressure on patients to not speak up when doctors get it wrong. One man was sued for telling how his father was mistreated by a doctor in front of three witnesses. The Minnesota Supreme Court sided with the family, but they lost two years’ salary, time and suffering. Everyone makes mistakes; every profession includes some less adequate technicians; but in medicine, it is more often tolerated or covered up. Volumes have been written about those topics, so I won’t say more. If you’re interested in progress, I recommend the blog of Trisha Torrey on About.com and the new book by Leana Wen, M.D.
How do I know how Nancy feels “inadequate and stupid” after a doctor saying the “only joints that the RA would cause pain in is the small joints of the hands and feet”?
I’ll be as brief as possible.
Over the past 1.5 years I’ve seen Dr. Tylenol 3 times. There’s been no joint exam and my kids know more about this disease than this doc. Last time, new office policy required them to give me my first-ever-in-my-life HAQ (it was a RAPID), which they admitted is only kept in case it’s needed for insurance. Last year, Dr. Tylenol also injected my shoulder with cortisone based on what Dr. Smart put in my chart (bursitis). I was prescribed a new DMARD and told to return for follow up.
The staff called to change the follow up appointment and ended up scheduling me with a new doctor, an old friend of Dr. Tylenol, who was “brought into the practice” by Dr. Tylenol. That appointment was yesterday and we met Dr. Shrug.
Shrug is an apt name since s/he refused to look at my neck, knees, or the vascular situation that’s been on my leg the last year. I’d changed into shorts to be sure everything could be seen. I mentioned my knees a few times and pointed and asked to have them looked at, saying they are swollen right now in the back. Shrug. All ignored and not in the doctor’s notes.
Dr. Shrug did not do a joint exam, but commented skeptically while pulling on shoulders and right elbow quite a bit, tugging on right foot, glancing at left hand, and repeatedly twisting right wrist up and down with thumbs dug into the top. Dr. Shrug said several things that we know are inaccurate and it was easy to believe s/he had gone to school with Dr. Tylenol. Examples of what Dr. Shrug said:
- I don’t see swelling so I don’t know what I’m treating. Get an MRI of the swelling, but wait until a swollen day to get it. The MRI people want your money, so they’ll be glad to see you on the same day if you can call them when you’re swollen.
- I will only MRI one foot or hand because that is where the disease starts (I said my knees, shoulders, and neck are the worst and doc shrugged).
- We know very little about this disease. But we know damage starts in the hands. It can be the feet, but mostly the hands.
- X-rays only show damage after bone is completely eroded. But you’re so lucky you do not have any damage. Look on the bright side because your x-rays show you have no damage at all.
- If I don’t see erosion on the MRI, I don’t see how we could take the risk to give you another toxic medication.
- You’ve had so many drugs; if they don’t work, maybe it’s something else.
- If there is no erosion on the MRI, maybe it’s just a soft tissue pain syndrome (I said my joints, not soft tissues, are twisting, stiff, weak, and painful, and doc shrugged).
I chose the right foot as the lucky dog for the MRI. Lots more is going on in my life and with my Rheum disease too. I’ll be okay. You’d think this would get easier. But it’s the same. The first tear fell to my check as I said, “Remember why we were so glad to find Dr. Smart?” (see video below).
One thought I had during the appointment yesterday: “If this weren’t Florida, we could record this. This should be recorded. I don’t want anyone to get this anymore instead of good care.”
Both of these docs are so young – it feels like the future is lost –– and the wrong people hold all the cards. But they don’t, KB reminded me: We hold the truth.
Related reading
- Don’t Give Up
- The HAQ’s, the RAPID’s & the Rest: 3 Reasons It’s a Moot Point
- My Doctor Fired Me
- The Appointment with Doctor Perv
Really awkward old video with critically important message:
Hi I’m Carol. I have had RA for 38 years. I was diagnosed at age 19 and I’m 57 now. I have written for About.com Arthritis for 16 years. I must admit, I was shocked after I viewed Kelly’s video. Her experience left me sad. If that is your experience with your rheumatologist, look for a new rheumatologist who you feel is a partner. Is it exhausting to find “the right doctor”? It can be…but don’t give up until you do. A remission is not simply defined by blood tests. The American College of Rheumatology defines a remission. Please read my article about this.
What Is an Arthritis Remission?
[link removed]
Also consider reading:
Arthritis – What to Expect After Diagnosis
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Arthritis Treatment – What You Should Expect
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What to Expect From Your Rheumatologist
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I hesitated to intrude on Kelly’s territory, but I feel strongly we must share information. All of you are welcome to comment on my site too at about.com [link removed]. We are all in this battle against arthritis together. Arthritis is life-changing. But if you are leaving your doctor’s office feeling defeated — you are on the wrong course. Make the necessary changes no matter how exhaustive the process feels at times. Don’t settle for feeling defeated. – Carol
Carol,
It seems there are several facts you may have misunderstood. The previous 88 comments discuss the blog post about newly trained yet poorly informed doctors, as seen in the reader’s comment and the video implores people to never give up looking for a good doctor.
I do not think blood tests define remission. I attended ACR sessions taught by those who were developing ACR/EULAR remission
guidelines. 15 RAW posts on remission: https://www.rawarrior.com/tag/rheumatoid-arthritis-remission/
Carol, along with RA Warrior, I have appreciated the wealth of information you post on about.com. I agree that we all need to collaborate with one another to raise awareness about RA, to raise the bar for appropriate medical training, and to establish better standards of care. I believe Kelly is doing a tremendous job raising awareness that hopefully will affect the training rheumatologists’ receive. I agree with your sentiment that we must not settle for inadequate rheumatology care. It’s a pleasure to see you on this site : )
Sincere apologies if I misunderstood. I read most of the comments and viewed the video. I’m sure there are incompetent rheumatologists out there, as is the case with any medical specialty. I just see a lot of hopeless feeling in the video and comments. I believe75% of the battle is patients knowing what questions to ask. If you disagree with a doctor, discuss the problem. I saw many comments referring to docs who won’t prescribe pain meds. In most cases thats not cuz they dispute your level of pain… They dont want the liability of prescribing narcotics. Sad for us, huh.?
I’m sorry if I confused you. The video is several years old. In it, I cry tears of joy for having found a rheumatologist who does not treat by blood test (crp), and encourage people to never give up whether they need a new treatment or a new doctor. During the video I also mention, as a point of comparison, an encounter with a rheumatologist who I met one time, who was obviously not a good choice, and did not become my doctor.
As I intimated in this recent blog post, the video is old and awkward. But, it is a reflection of the struggle a patient can encounter in looking for adequate care, and an intense plea to never give up, an important message that I stand by.
I am sitting here tonight trying not to cry. I’m hurting so much I can’t seem to find any part of my body that isn’t hurting. The last two weeks have been much worse than usual. My knees, my hips, my lower back, and the list just goes on and on. But I forgot – all those things can’t be coming from my RA because my rheumy says it is only in the hands and feet. So why am I in so much pain. Why am I taking all this medicine and I’m still hurting terribly? Why can’t we get answers and help. Sorry – don’t know why I’m even posting – just discouraged tonight – guess I needed to vent to people who understand. Bless you all……
Dear Nancy,
I hope it gets better soon. Or you find a doc who does not have his head in a box.
It’s definitely not useless to post. When I read your words, I knew I was not alone being a bit discouraged last night too. & We can pray for one another.
Hi all, Sometimes I feel like I’m on a roller coaster, up and down, round and round, that will not stop. Then I look over and my Rhuemy is on the twister ride spinning towards me and never quite connecting because I’m up and down and she’s spinning back and forth. On some visits we almost connect, she seems to be treating me “the Patient”, then on some visits, it’s about the Labs. The diagnosis has gone from Ra, possible sclerederma, to some other form of arthritis, to the latest, connective tissue disease, suspect RA. she has been treating me aggressively though, with MTX and CIMZIA, the combination was really helping. But now my Kidney function has dropped to a dangerous 39. no more MTX or any other meds, or pain killers. I feel horrible, I got a upper resp. infection and had to skip my CIMZIA. I am hurting in my hands feet, knees legs, elbows, neck. My fingers are cracked and have the unknown strange sclerederma type scaling, that gets better when I am on MTX. All this with normal sed rate and RA factor. I am not able to work, but the labs and Social Security say I am perfectly able to work. I go back to the Rheumy in 2 weeks. I wonder what is next??? Oh yea I broke my toe and hurt the whole foot. The Kidneys say NO Tylenol of Aleve or Ibuprofen. I just want to get off this Autoimmune Coaster, I miss normal so much. Thanks for all you do Kelly.
Saw my young rheumy at a “teaching” hospital on Monday. Two minutes into the appointment, he told me my shoulder, neck and jaw pain were not caused by RA. I had a puffy middle finger:), and nothing else to show him. I could show him ten swollen fingers today, but won’t waste the gas for the hour drive to get there.
I stopped MTX injections in May to “see what would happen”, and the biggest change so far is my stomach doesn’t hurt.LOL
Rheumy would always get a doubting/puzzled look on his face when I mentioned stomach complaints. He’s the same guy who told me I had a virus when I vomited a few hours after my first MTX injection. Injections are better than pills, but….
I am waiting on labs and x-rays of hands and feet(very reluctantly ordered by rheumy), even though it’s been a year since my initial diagnosis and x-rays. He’s pretty sure they’ll be normal.
I suggested retesting for RA if it’s not causing my pain, but he was quick to assure me that I would test positive and always have to take meds for it. I was near tears, angry, and feeling so invalidated I wanted to crawl under something that I don’t think I will ever go back.
I am also diagnosed with FMS and OA, so I “get it” when he says RA is not causing my pain. I just don’t think he does!
I count my blessings that my Rheumatologist (in Walnut Creek California, if you want his name just ask!) is so much more knowledgeable than Dr Shrug and Dr. Tylenol! He has never once questioned the authenticity of RA having attacked my knees, my shoulders, my clavicle, even! At least he is familiar with the basic descriptions of RA as put forth on WebMD and the Mayo Clinic reports! To have a rheumatologist tell you that the ONLY place you would be attacked by this disease is your hands and feet is so totally absurd as to leave me incredulous! Then again, I am having issues with an orthopedist who was supposed to “treat me” for some knee problems that I incurred when I took a nasty spill last year…(I have a patella problem, had a fractured tibia, have torn meniscus, and baker’s cyst. As shown by the MRI. But I am pain-free). He felt that since I had no pain, I should not be treated. I got my GP to refer me to physical therapy so that I could find out what to do in order to avoid pain. The PT’s suggestion was that I simply stop walking at all, except for “around the house or if you have to do grocery shopping.” For the rest of my life! The idiocy of that remark was one that I could not tolerate at all. So I am on my own, studying up on the Mayo Clinic’s suggestions for exercises to strengthen the muscles supporting the knees. You really need to do a lot of online research once you have a diagnosis, and become your own very pro-active advocate for treatment!
Luckily, I have a good Rheummy. I can ask him anything, no matter how stupid and he answers. He encourages me to do research and co-operatively, we work together. However, can’t say the same with my current GP and I am changing that situation really soon.
I too have experienced my Rheumatologist’s uncaring attitude and dismissing my pain as being unrelated to RA, therefore unimportant. My questions go unanswered.
For nearly a year I had been experiencing very sharp, stabbing pains. It was very painful and a very scary time for me.
During this time, I happened to be in the process of changing my GP. Being a new patient at this office, you would automatically see the Physicians Assistant for your first visit. (Thank God) She was going over my medical history and recent issues with me, when I explained to her the pains that I was having. It just so happened that she use to work at a Rheumatologist’s office. She told me that many of the RA medications can deplete the body of vitamin D. She said that this could cause the sharp pains I was discribing. So, she ordered bloodwork and sure enough, that was it! I am now taking D supplements and the sharp pains are almost nonexistant.
Such a simple explaination and solution. Certainly All Rheumatologists should have this knowledge, and testing for it should be included in routine bloodwork.
I hope this info. can help others!
Wow!!!I can hardly believe what you all go through to find a good Rheumy. I am in Yorkshire in the UK and was diagnosed five years ago with ra.
I have gone through ALL the meds/dmards you can imagine and my list of painkillers is mind blowing. On a visit to my gp when having a flare he looked at my meds and sighed. “We’ll put your lyrica dose up for a bit and see how you go. I can’t prescribe anything else ‘cos your already on it!!!”
He is brilliant and very supportive.
My rheumy is also fantastic for which I am eternally grateful!!
Yes my lab work isn’t that extraordinary, I barely show any inflammation, never have, but the puffiness and heat can’t be argued with 🙂
I have had an unsatisfactory result with Enbrel, my energy levels and fatigue are so much better but the joint pain, puffiness and heat remain 🙁 . I tried all other possible dmards and am still on sulphasalazine, prednisalone and methotrexate and am shortly to begin Infiximab treatment.
My rheumy hasn’t treated my ra aggressively as the good old NHS system has pathways all patients go down one step at a time. We all have to fit in a square hole even if we are circles,triangles or ovals, but at least we have no insurance company issues. Anyway, I was giving my rheumy a glowing report and his YOUNG sidekick as well!!! Both of them listen to you, gently examine you thoroughly, apologise if they cause you pain and explain any new meds very well, give thorough information and we always have our rheumy specialist nurses on hand for general enquiries, emergency appointments and reassurance. I feel blessed to have such a great team treating me cos its very different around the UK depending where you live, what your gp is like and who they refer you to. I guess you’d call it a zip code lottery!!
I just wish all our rheumy’s all over the world were trained to the same standard and had the empathy required to have a decent clinical bedside manner!!!
I’m going too see what experiences people have had on Infliximab on another UK site, but if any of you wonderful people over the pond have been on it or are still on it I would be grateful for your input.
I hope you are all having a good day over there, I’ll be skyping my brother who lives near New York later on today. I’m Planning a trip to see him soon, just hope New York is wheelchair/disabled friendly!!! 🙂 🙂 🙂
Gentle hugs to all 🙂
Deborah
Hi All,
Thought I would share what seems to be an all too common story regarding rheumatologists. I’m unfortunate enough to have seronegative RA and have been living with it for 7 years now. I had a six year wait to see a rheumy because of the lack of specialists where I live. Up until 2 1/2 years ago I as still quite active, even running marathons. I was very fit and in great shape. Two-and-a-half years ago I became debilitated by the disease and could barely function with every joint affected except my knees (weird huh?). My GP put me on prednisone & methotrexate which brought great relief along with an anti-inflammatory & pain killers. I hate taking medication but this combination keeps me functional. Anyway, the prednisone & lack of activity caused me to gain 30 lbs. I finally got an appointment with a rheumatologist and he examined my left wrist and my left index finger and told me there was no sign of RA and my only problem was that I was fat! I nearly fell on the floor. I could barely speak and all the questions I had were just blanks. I left. I went home & cried for two days. My GP was as flabbergasted as I was and with some effort, I am now scheduled to see someone else in September. I have been following your site for over a year now & I’m glad I can share my experience. Seeing that there are so many others receiving such poor treatment leaves me to wonder about those who won’t fight for themselves, they’re left to suffer & that is very sad. I’m lucky enough to have a great GP, if he could prescribe a biologic, I wouldn’t have the need for a rheumy. Now I wait, again, keeping my life on hold until I can receive treatment from someone who I hope will be more competent than the last guy.