Patient’s Rebuttal to RA Pain Catastrophizing Claims
Part of me would like to back down. But this pain won’t let me. Is it ironic that I encounter the most cruel RA pain in years at the same time I encounter this argument again about RA pain, catastrophizing, and depression?
Relating pain, catastrophizing, and depression to RA
Ironically, an article called “Pain, catastrophizing, and depression in the rheumatic diseases” appeared online yesterday in Nature Reviews Rheumatology as my refutation of RA hypochondriasis was published. In my opinion, the article is based on mistaken presuppositions as they attempt to group “arthritis” (OA), Rheumatoid Arthritis disease, and fibromyalgia. OA is the natural process of aging or breaking down of joints due to use, fibromyalgia is theorized to be a malfunction of pain processing related to untreated OA or degenerative disk disease, and Rheumatoid Arthritis is an inflammatory autoimmune disease that attacks organs, joints, and eyes. They are quite dissimilar.
Can I tell you what my kids asked me? “Why didn’t they compare the pain of a broken leg to carpel tunnel syndrome?” I honestly think my kids make more sense. “To date, abundant evidence suggests that depression and catastrophizing about pain can serve as prospective markers of risk for negative painrelated endpoints including severe physical disability, disease progression, and nonimprovement following surgical and other interventions.”
I got a funny feeling when I saw the 120 footnotes. The first thing I noted was that the majority of those 120 footnotes are not about RA. If someone sneezed, would they add a reference to someone who’d sneezed before? Seriously, I thought there was something familiar about the way it was done. So many of the references were old. Could it be? Remember the infamous “sixty-six footnotes” on RA pain tolerance? The original article saying RA patients have a low pain tolerance has the same authors as the new one called “Pain, catastrophizing, and depression in the rheumatic diseases” (abstract).
How could this vicious cycle of mistaken perception occur?
Here is what may have happened. A disease with mostly invisible symptoms began to be documented but it mainly occurred in women of child-bearing years. The women tended to be better when pregnant. Doctors were puzzled and words like hysterical (“related to the uterus”) were applied.
Rheumatoid Arthritis carried that baggage into the twentieth century when articles were published about such things as a “rheumatoid personality.” Patients who suffered from RA’s cruel and unpredictable symptoms tended to remain extremely private about RA symptoms. RA also remained a mystery to science as one researcher said last year at ACR, “We still don’t know what RA is.”
Some doctors suspected invisible symptoms to be psychological. This concept was passed on through medical schools and textbooks. Patients claimed to have more pain than doctors thought they should have according to their appearance and what they had been taught. Doctors who saw patients claiming to hurt much more than they should wrote in their charts that the patients were exaggerating.
Naive inexperienced RA patients sometimes say things to their doctors like, “How am I going to take care of my baby?” or “This is the worst pain in the world.” Such statements are considered catastrophizing. “Catastrophizing” is written into charts and the perception is perpetuated.
What I am saying:
- RA pain cannot be measured objectively by those who have not experienced it, even with algometers.
- RA pain is not caused by RA patients’ attitudes or emotions, but by a destructive disease which is known to injure tissue.
- RA patients are generally optimistic, bright, and psychologically healthy individuals.
- RA patients tend to minimize their pain when speaking with non-RA patients often in order to save face and avoid being seen as exaggerating since RA pain is so severe.
- RA and all lasting pain can cause depression, probably with organic and psychosocial origins.
What I’m not saying:
- I never denied that stress could make pain worse in some people.
- I never said that RA patients do not get depressed.
- I never denied that focusing on pain could increase its intensity.
The bottom line on RA pain and exaggeration
Frankly, I’d estimate about 1 in 20 RA patients may exaggerate their pain by dwelling on it. That’s my personal opinion and I have no idea how common that behavior is in the general population. Most RA patients seem to do the opposite: even when the pain is excruciating, they insist upon being very private about it and bravely facing life.
The bottom line is that this is no different than the way that so many books and websites define RA as achy, swollen hands. It’s just not accurate. You can’t get a clear picture of how RA patients relate to pain by reading this post. But if you’ll go through the posts that are linked here and read how actual patients respond in comments here every day, you will.
The bottom line is that whether it’s a child whose doctor forces her to employ psychiatric treatment for RA pain or a middle aged man or woman suddenly disabled by RA, when there is a break in the disease or it is treated successfully, the patient instantly returns to life as normal. They are not perpetuating their pain.
Postblog: A real patient
As I wrote yesterday, I was in horrendous pain. I had gone to pick up the pizza in the same pajama top I wore all day since I couldn’t raise my arms to change. I continued to take the pain medicine through the night in order to rest and into the morning in order to get to a doctor appointment. By the time of the appointment, there was enough slow release pain medicine built up that I had been able to dress myself. However, in the office, side effects hit hard: trembling hands, dizziness, and nausea. I decided to let the medicine wear off. The result: I’m back to frozen shoulders with elbows stuck by my side.
In some ways, being a real patient gives me advantages: I tend to believe patients are telling the truth, taking their statements at face value. Experience and trust lead me to understand better what patients are saying. And disadvantages: Readers who have prejudged RA patients with labels such as hypochondriasis or catastrophizing will discount my opinions or refuse to read them. Guess which readers will be able to know whether I just over-stated or understated my shoulder pain?
Recommended reading about real RA pain:
- Some Rheumatologists Don’t Understand How Much It Hurts
- Does Rheumatoid Arthritis Pain Really Hurt That Much?
- The Value of Patient Reported Outcome Measures of Rheumatoid Arthritis
- Rheumatoid Arthritis Pain
- Do Rheumatoid Arthritis Patients Have a Low Pain Threshold?
- What Is it Like to Have Rheumatoid Arthritis? Part 1: The Usage Principle
As usual Kelly, you are right on!!! I’ll have to look up that article you just mentioned….same authors huh?? Interesting!!! What the heck could they possibly know??
I minimize my pain daily, sad but true. Guess I just feel I have to! And I had my ortho surgeon say recently I had an “exaggerated” response to a maneuver he did! (Roughly put me through range of motion I might add).
I hope you feel better Kelly, you’ve been through so much lately as you bravely take on “our” fight. God bless you!
I actually hit a doctor once, that did that to me, and caused me a lot of pain. He never did it again, or discounted my pain.
Marie, it does seem that if we let down our guard for a moment, then we hear those comments about “exaggerating”… My shoulders are being extremely cruel & I keep wishing the doc could see it like this. Then I wonder whether a doc could understand I’m not exaggerating when I say I couldn’t feed myself last night or change my shirt, etc because of shoulder stiffness.
Ha Kelly, right on again! You express thé way I experience Life with RA so well… Much better, in any case, that I could. Thank you for being our voice!
Kelly, I am so sorry to hear that your shoulders have decided to “go on strike” and not cooperate! Contrary to popular belief, as a physical therapist, it truly makes my heart ache to see people in pain, especially when I can usually do something to decrease that pain, even for a little while. I once had a patient with RA tell me (before I was diagnosed myself), that if someone has pain ALL the time, and I decrease that person’s pain by even a few notches for even one hour, that to that person who is suffering, that time with less pain means so much compared to someone who feels a little pain some of the time.
To counter the authors who thoughtlessly joined a group of OA, RA, and fibro patients, I offer the following information. For patients with BACK pain who enter our clinic, we give them a questionnaire called the “Fear Avoidance Behavior Questionnaire” or FABQ. The FABQ was developed by Waddell to investigate fear-avoidance beliefs among LBP patients in the clinical setting. This survey can help predict those that have a high pain avoidance behavior. It was also designed to help identify patients who catastrophize.
If we take the first 5 statements from the FABQ and just eliminate the word “back” we have:
Statements:
(1) My pain is caused by physical activity.
(2) Physical activity makes my pain worse.
(3) Physical activity might harm me.
(4) I should not do physical activities which (might) make my pain worse.
(5) I cannot do physical activities which (might) make my pain worse.
If every person with RA took this test it would show 2 things. First, we would be labeled as people who are very fear based because we would ALL agree these statements are true for RA BUT WE DO EACH ITEM ANYWAY. And most importantly as second, WE CANNOT COMPARE TYPES OF PAIN THAT HAVE DIFFERENT ORIGINS therefore making any type of “standardized” catastrophizing and fear based analysis for musculoskeletal pain inappropriate to use when comparing to auto-immune based pain!
Musculoskeletal pain is vastly different than RA pain and to even compare the two shows a lack of understanding on a physiological level because the mechanism of action that triggers pain for both is coming from 2 totally separate systems! An analogy would be: The city is destroyed by a hurricane. A year later, an earthquake hits. The city has been devastated twice but to say that “the weather there is horrible” is a totally erroneous conclusion based on too little information and too much supposition.
Our goals are simple. Live our life as best as possible and hopefully, we will touch enough people so they will understand our pain better and therefore, understand us better.
Best wishes to all,
Dr. Mary Taylor, PT, DPT
PS: Kelly, have you tried iontophoresis via a battery electrode for your shoulders? It does wonders for my mother’s ankle. Send me a private email on FB and I can give you more details if you wish.
Thank you, Mary. Very helpful!
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Last week my doctor finally put me on a timed release pain medication taken with my regular pain medication and for the first time in 14 months, I have had three days in a row where I actually felt close to normal. Close to normal is an unbelievable feeling and I have been euphoric these last three days! I work full time, take care of a large house, two children, a husband, a dog and two cats and try to keep a smile on my face at all times. No one that does not have RA can perceive the unrelenting pain that most of us suffer. I liken it to a colicky baby that never outgrows the colic. Keep up the good work!!!
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What does catastrophizing mean anyways? It isn’t even a word! And isn’t it expected to be a little depressed when you are in constant pain? People who suffer from chronic pain (not RA) suffer from depression, that is very well documented. It is depressing when you can’t do the things that you used to do or when you are constantly dropping things because there are no handles to hang on to. And I am not even as bad as most RAer’s.
I was relieved to finally have a diagnosis (even though it is RA), because I felt vindicated that all the fatigue and pain wasn’t in my head. These reports are very frustrating because the authors clearly do not understand the disease at all!
Apparently it’s a word in their profession, P. When I looked it up a couple years ago, I learned that in plain English it means to make statements that sound as if a situation is a catastrophe. The problem is that RA is a catastrophe for many patients. Women cannot take care of their children. Men cannot continue in their jobs as usual. Kids cannot grow up doing the things that other kids do. If you can’t walk or brush your hair, it can be a catastrophe to you.
Another knockout post Kelly. Thanks so much for it. Though I am no longer personally affected by the medical communities ability (or lack there of) to comprehend the whole experience of RA patients, the cause has never left my heart. I’ve linked to this and other posts of yours in a post called “more keystone quackery” http://inspiraven.com/blog/?p=3107.
I think your assessment of how this can happen is spot on. Through in a dash of sexism through the years and we get closer to understanding the blind spots.
Thanks again for all you do!
Thank you! 🙂
O-M-G! I have had similar pain – different site – and I am so fortunate my docs all believe me! It is horrible that there are docs that believe their patients with RA exaggerate their pain. I think this is a miserable state of affairs. Why go into rheumatology (or pain medicine, for that matter) if you are prepared to think your patients are all faking or at least exaggerating their pain? Or, in the case of fibromyalgia, their illness? This is crazy!
Currently I’m fighting jaw pain. My jaws crackle and crunch and HURT when I try to chew. Maybe if I lose weight (a good side effect) people will believe I am in pain – but I have no “people” who don’t believe I am in pain (praise God).
I never questioned that my Mom was in pain, and I was relieved 10 years into her struggles with RA when she told me the pain was gone – all of her joints were either fused, had synovectomies, or were burned out and no longer pained her. But by then she was in a wheelchair and totally crippled and disabled. I don’t recall that anyone ever questioned that she was in pain, or that she was “faking” her disability.
Good news: My rheumy had a resident with him when I saw him last week. We got into a discussion of shaking hands, and he and I demonstrated the “arm shake” for her, as well as several other ways to acknowledge people without causing pain. So that part is spreading. Knowing residents, she will get into her little group of other rheumy residents and demonstrate the handshakes and talk about pain. My doc made a point of telling her that most RA patients hide their pain so they won’t be a burden on or be boring to their family and friends. That info will be shared, too. As they move into other practices for training, this information will will be disseminated gradually and widely. We may have much to contend with, but there is hope for the future.
Keep blogging – keep writing – keep encouraging. You are doing good!
Wow. Thanks for the story! I’m so glad the handshake is spreading! And for sharing about the good words about patients too “that most RA patients hide their pain so they won’t be a burden on or be boring to their family and friends”. Another patient told me something similar recently – thank God for doctors who know!
Thank you to everyone reading. I’ll reply individually later. My shoulders are indeed bad and it’s my second son’s birthday so I’ll be trying to go with him to a movie. I really hated writing this, but not as much as I hate living it. This is real. I am in horrific pain – this is not made for TV at all.
Kelly, I hope you get thru your day with good memories of your son’s birthday – aren’t they a joy! (children)
This article makes me wonder, who wrote it, not just the name, but the who as to, what was the purpose of this study, who backed it, and why. It almost sounds personal. Did the writers have some need to show, that people having a difficult time with chronic pain are a bunch of whiners, and here, we are gonna set out to prove it? Why did they waste their time with this article? It really is very strange.
I still go back to the pathophysiology that is RA. If you have a slow, destruction of the bone of a joint and its surrounding tissue – are you to expect *no* pain? And if it takes a long time, years, to get to deformity, like a slow, tortureous path to this endpoint, we, as a group, are not allowed to express our pain? Express our feelings about this awful disease and its effects. Are we supposed to just sit back and take it like, what a dummy?
I would expect that most people would say, “Oh, my God! this is what will happen to me, my bones are turning to mush, my tendons are snapping into positions they aren’t meant to, my tissues are swollen and irritated, I have a cardiac effusion, my eyes are uncomfortably dry and prone to ulcers, and not speak up? In a soft, controlled voice?
Wow, who are these people? Are they into bondage, torture, lack compassion, have no nerve endings, are space aliens? Or maybe psychopaths perhaps, devoid of feeling for others?
Again, what was the real purpose of this article; why I would ask is the unwritten goal. Hmmmmm.
I don’t know Beth. But it is obviously “important to them” since they wrote more than one. I have not had time to go check, but my guess is that they have written others. When a researcher is interested in a topic, they often do several studies in that area.
I think your outrage about the misunderstanding of how we suffer is well-placed & I hope it helps non-RA patients who read this to see our perspective.
Kelly, thank you. You are 100% correct – the number of patients with RA who “exaggerate” pain is probably no higher than the rate among any other patient population…yet the illogical assumption on part of these “medical experts” concludes that one group with a particular disease has a higher-than-average number of patients with a tendendecy to exaggerate, catastrophize or dwell overly on their pain? From a statistical, scientific viewpoint, their statistics and science make absolutely no sense!
Synovial pain – the source of most physical pain in RA – is a completely DIFFERENT source of pain than the pain of OA or Fibromyalgia. SYNOVIAL pain more directly affects nerves – the SCIENCE is there to explain why the pain of RA is so severe, but where are the scientists who can explain this logically? It’s strange to me that misperceptions and ignorance continue to reign, even amongst the medical, scientific community. Folks, synovial pain is akin to having an exposed tooth nerve – now, replicate that through multiple joints (in some, every synovial joint) in the body and you have a good idea how much it hurts. OA pain is NOT synovial pain – it’s that bone grinding pain that, by the way, many of us have in addition ot the synovial pain that preceded the joint/bone degredation. It’s simple, it’s science, it’s obvious and we give underachieving medical practitioners and scientists way too much credit and leeway to spout their fuzzy science. The people who promulage this misinformation are people just like us, with more education in medical matters (although,perhaps not enough), but not necessarily more intelligence than the average person suffering from RA.
Let’s fight the facts with the science…I am hoping there are some researchers who are intelligent and questioning and will actually study the impact on the nervous system and pain centers of the brain of synovial pain vs. other sources or “arthritic” pain. Then, maybe we’ll have a leg to stand on with these practitioner/jokers who maximize suffering by minimizing pain in JRA and RA patients.
Hi Judy,
Good ideas. I have had hopes for a while that I could get a researcher to take me up on such an offer. In some of the posts listed here, I do argue more specifically on some points, but it would be invaluable to have some researchers who really understood RA investigating “from our side.” Sometimes it’s discouraging that we are “just patients” and others who don’t know enough about RA have all the “power” to make such claims that we know without a doubt are mistaken.
Kelly, thanks again for your ministry to RA Warriors. I am feeling your pain today. My personal opinion is that shoulders are the worst place for RA pain. Over the years before my dx steroid shots helped me. You can’t move in any direction with shoulder pain and sleeping is impossible. I am fortunate that methotrexate has helped my shoulders a lot. I am so sorry that you have not had the same fortune and pray that something will bring you relief. Have as good a day as possible and prayers will be going up for relief.
Thank you Kay. I agree that shoulder pain is one of the worst things. I don’t know what makes it so intense, but it can be excrucitating. That first night with both shoulders like this 5 yrs ago, I wanted so badly to go to the emergency room but no one would take me. Tears just ran down my face because all I had was large doses of advil & that didn’t touch it. It was several months before I could do my own hair.
it’s so interesting to try to figure out the pain part of RA. I’ve always said that I either have a high pain tolerance or a low one, but that I don’t know which. Either way I’m not private about the pain….i just tend to not acknowledge it so I can pretend like I can function as a mother, wife, and career person. What ends up happening is I feel like crap, its distracting to everything I try to do…so even though I’m going through the motions the end result is everything I do seem’s “half-assed”.
I believe my pain is mild to moderate on any given day. I’m also thinking I’m pretty lucky compared to some RA patients who must deal with severe pain of some sort on a daily basis. It’s a full-time job trying to manage this disease.
Thanks for the input, Katie.
And that’s at least what I mean about “private” – that I do “not acknowledge it so I can pretend like I can function as a mother…”
Kelly,
The second doc I went to in my quest to figure out what was wrong with me (moderate to severe RA) sent me to a pysch eval because I naively mentioned that I was in incredible pain. When I told him I didn’t think I needed one, he said that it helped “people like me” figure out what was really bothering me. So I told him – there are 2 things bothering me, and none of them need a pyschologist to make them clear
1) I’m in incredible pain which is not NORMAL for a 31 year old and
2) NO DOCTOR WILL TAKE ME SERIOUSLY.
Yes, I’m in pain every day, usually all day. Some days it’s worse than others – some days, like Monday of this week, I was in so much pain I could barely talk, let alone move. Most days I just have knee problems or hand problems. It’s so often and so much that telling people everytime I hurt would be tantamount to WHINING about it all the time. So I suck it up. I deal with it, and the only time anyone hears about it hurting is when it’s REALLY THAT BAD. They assume that the rest of the time I’m normal. People don’t understand what it’s like to have every joint ache. To be afraid of stairs or jars or taking care of yourself at 32 years old. To wonder if today is going to be a good day or a bad day. They think (and doctors think) – you can just pop a pill and get better.
Thank you for your work to educate people…and keep fighting on, sister!
Suzanne, almost everything you wrote fits my own life exactly too. (And I’ve said some of those things exactly too.) And thanks for putting the good description here that I think is actually pretty typical.
My own GP knows better, but when he was out of town in Novemeber, I needed a prescription so I saw his “oncall” friend. The guy tried to tell me I need anti-depressants INSTEAD OF DMARDs. I told him, “I’m not depressed. My joints don’t work.” He had no idea what Actemra was or Orencia but tried to tell me that methotrexate is a dangerous drug with side effects. Like anti-depressants aren’t?
Hi Kelly,
I’m sorry to hear about your shoulders. Feel better soon.
Let me play devil’s advocate on this one. Have you ever heard from a RA patient who’s pain was not believed by their doc and referred to a psychiatrist or psychologist that actually went? I’d be curious to know what the mental health professional said. Wouldn’t it be something if they reported back to the doc that their patient was not suffering a mental disorder and to believe the patient and treat their pain adequately.
Are we special or unique in the way we react to loss of function and independence? Do we react the same way as someone with a degenerative disease that isn’t known to have chronic pain associated with it, like muscular dystrophy or ALS? Are we treated differently by our doctors than people with MS? Are MS patients told that they’re hypochondriacs, hysterical or that it is all in their head when they report that they are distressed because they can’t move or control their movements properly?
Actually. Yes. MS is another one of those ‘invisible diseases’ that land people in a fog of disbelief. Too many hidden aspects to consider when calling one ‘overly sensitive’ is so much easier. I’d expect there were some knowledgeable and compassionate mental health professionals who have had some training in chronic pain issues, but I wouldn’t want to spend too long at that roulette table.
Good point – if counselors had some awareness of RA, it could make a difference just as if medical assistants and nurses did. I did go to counseling to deal with the grief of the RA diagnosis & it was some help. However, it was a disappointment that she did not take RA seriously or know what it is so she could not realize how disabled I am and how that affected me. It probably limited her abiltiy to help in some ways.
Thanks to both of you for your thoughtful replies.
What I was trying to imply with my questions is that RA patients aren’t being singled out and people with other diseases are treated similarly and react similarly to the limitations caused by their diseases.
I guess we just always need to be diligent and look out for ourselves.
I agree that there are probably some other dx who also suffer these problems. Some have PSA’s from the AD council which do help them. We’ll get there.
I can’t believe I didn’t reply to this part of your question yet. (Notice many of my replies were after midnight that day when my kids had gone to sleep & I was writing the next post in so much pain.)
I’m so glad you asked. And the answer is Yes. I have talked with patients who did look into psychiatric answers or medicines. Often what therapists say is the same thing physical therapists say: “Tell your RA doctor that this is not going to take away this pain.” I’m thinking of a few individuals who’ve told me that. As an interesting side note, I know several patients who are doctors of phsychology and they find these theories ridiculous as I do. And the history of RA with the “Rheumatoid Personality” and all the baggage might make it worse.
doctors lack of knowledge about ra leads to poor mangement and increases pain …
Kelly: Happy Birthday to you. Happy Birthday to you. Happy Birthday, dear Kelly, Happy Birthday to you.
Since I’m pretty much an old lady I’m not sure if I’m doing this “post” thing right. So I hope it flies.
Just wanted to say that your website is VERY impressive…and informative and I’m sure it is extremely helpful to those like you who suffer from RA. I see that you have many followers, which also is good.
Anyway, wishing you a peaceful and joyful birthday, pain-free with lots of energy to do the things you love most. L.A.
Thanks for stopping by LA!!!
Hi Kelly, has anyone done an MRI study during an RA attack? I am still new to what has and has not been done. I would think that the heat and swelling or pain activation would show up possibly in an MRI. I hope to ask my doctor this on my upcoming visit.
My thinking is that pain is an electrical process through the nervous system, but maybe not. They talk about these studies where they can track the stimulus of the brain when patients use their cell phones, so why not track an RA episode the same way? Or did they come back with the same response of “its all in the patients mind”?
There are times when I wish this was true and all we would need to do was take a class in mind therapy to heal ourselves. It would make our lives so much simpler, but my throbbing joints and muscles tell me otherwise. 🙄
Here is a fMRI study to look at the brains of fibromyalgia patients back in 2004 and their responses to pain. I would think you’d get similar results in other patients with chronic pain.
http://brain.oxfordjournals.org/content/127/4/835.short
It showed that pain catastrophizing was associated with increased activity in certain brain areas.
MRIs are expensive procedures. There are other less expensive imaging technologies that are used routinely to assess inflammation and joint damage, like x-rays and ultrasound. Many rheumatologists use ultrasound imaging in their offices. They don’t do anything for pain detection/perception though.
Hi Tanja, Great discussion. And RaRAP (ResearcherandRApatient) has some good points. Also, nuclear bone scans like I had last week also come to mind. (Links here and here discuss.) The radioisotope collects in inflamed joints and exposes onto the camera. Obviously, it would not be safe to have the scan often. The tech told me it would be safe to have every day, but that doesn’t sound right to me. And more to the point, it’s not necessary. The rheum doc knows from the patient’s testimony whether joints are flaring.
As far as the mind and nervous system go, I don’t think RA pain begins there for several reasons. I believe it has an organic physical source; some say that the nerves are exposed directly to inflammation or disease activity. Whether that’s right or not, when patients respond to treatment, they go back to usual activities immediately. I see it every day – they are not stuck with abnormal pain processing behavior. However, the mind over matter principle can help some of us to cope with pain when we cannot get adequate relief from medical treatment. And of course the post already mentions that extreme stress or focus on pain could make it worse. No one denies that. The problem is actually that so many researchers are unaware of how severe RA pain is documented to be to begin with.
I’ve been taking Humira since November 2011. It has not worked at all, ever. (Prior to this, I took Enbrel for 6 months. It worked in months 1 and 2, but stopped working at all before I got to the 3rd month. I took it the whole 6 months; I was glad to do that, because I didn’t know if it had stopped working or if the increased pain meant that I was in an RA flare.) My doctor says I must take the Humira for the full test time of 6 months. I really object. If it hasn’t worked in 4 or 5 months, what are the chances it’ll work in the 6th month? This medication has awful side effects and it’s extremely expensive. I’m not in a clinical trial. So why do I have to keep buying and giving myself these shots?
Why aren’t cost and serious side effects legitimate reasons for stopping a medication that isn’t working? Have other people had to take hazardous and expensive medications to complete a set time frame (when not in a clinical trial)? Is experiencing deadly side effects the only legitimate reason to stop an expensive and hazardous medication early?
What do you think?
I used to always downplay my pain, for years, back in the days where I believe I was downplaying the pain even to myself. In the last few years, as the disease has progressed and I’m in a lot more pain, I try to be vocal about it to raise awareness. Often, I hear “when people are in that much pain they don’t talk about it.” It’s easy to forget all the shame I felt as a child, being told “kids don’t get arthritis”, being laughed at and called a liar, all the times I struggled with schools to get help accommodating my health needs. People forget how misinformation and stigmas related to RA caused me to hide for a long time, to be ashamed, to be afraid to talk because I was afraid to be called, yet again, a liar or a hypochondriac, an attention seeker or an exaggerator. Eventually, I reached a point where I’d HAVE to vent about my pain to someone, where hearing ‘you look sore’ almost felt good just because it confirmed that this person wasn’t downplaying things. I reached a point where I blamed the misinformation, not the people, and wanted to share my story and provoke thought. I wanted, and still want, to educate people, especially since I’ve learned more about what this illness is capable of doing in the last few years. None the less, I am more happy living life with RA and discussing it with anybody who would like to listen than I am with trying to pretend it doesn’t exist. I no longer CAN pretend it doesn’t exist, so I do what I can to make it something that I can live with, not something I feel is victimizing me.
I am not exaggerating, I am stating facts. I wish this was an exaggeration of my symptoms. I wish I didn’t feel like somewhat of an outcast because I can’t do normal things like athletics, walking (except short distances), chewing without a ‘pop’, and many other things people naturally expect out of life until they no longer can. I wish I had a condition that I could take lightly enough to even consider using it as something to gain attention and sympathy from people with.
Time to tell on myself. I worked as an LPN for 22 yrs. 20 yrs with an RA diagnosis. I lived and learned, if I stay still, I will get stiff & hurt, so I must keep moving. Also having learned pain is a taboo subject in the medical field, and either minimizing or not acknowledging my pain at all, I had & probably still do have a “Holier Than Thou” attitude where pain is concerned. My biggest fear is being percieved as a drug seeker by my family & peers. As my disease has progressed & other organs are being affected, I am now unable to take my beloved NSAIDS due to kidney involvement. Again, I deal with fear. If I start taking narcotics now & this disease progresses, how much medicine will I require at a later date? I know I am not unique in my battles. I also know than our pain is real. I’m not real sure where I am trying to go with this, except to say I have been guilty of judging others levels of pain by my own standards.
I did have a doctor tell that RA patients have to learn to live with the pain with out Prednisone. Nasaids and pain management. I ask “who” says this? He said the board of rheumatogists. My question to him was how many of these actual experts have RA? He wrote my prescriptions………I was lucky that day as I was flaring and had proof of my pain but otherwise I think he may have not given me my pain managment which would have made functioning impossible.
I was diagnosed with JRA at the age of 5 and am now 45. After living with this terrible disease my entire life, I am more convinced today than ever that it is impossible for anyone to understand unless they are experiencing it themselves. People (generalizing) can attempt and make every effort to understand but I just find the placating too much. Moreso, I get furious that these professionals want to put labels on patient’s discriptions of pain and symptoms when they are healthy, functioning human beings. Even doctors need to remember: “walk a mile in my shoes”. Oh wait, I CAN’T walk a mile…..
I wanted SO badly to comment on that “paper” on exaggeration of pain. Grrr – not going to spend money to purchase something that ridiculous.
I do not doubt that some patients exaggerate. I also know that if anything, I keep my pain to myself. Even in the Doc office. I do not have a Rheumatologist any longer since the last one was a dismissive duckbutt. Thankfully, I have a GP that issues my Methotrexate and Mobic for me.
Anyone that experiences pain for any length of time, would be crazy if they didn’t eventually feel depression. I have dealt with the pain for decades, but was only diagnosed 3 years ago. I cannot believe the arrogant ignorance of some Rheumatologists as regards pain.
To complicate things, I do have 3 diagnosis’ for mental illness. None of those have any relationship to my RA, but when they see that I am a mental health patient- wow do they assume! I believe my RA is mild as compared to many friends that I have met online- but when it is bad, it is BAD pain. Thankfully, I have many good days in between as far as the RA goes.
What do you think is the best way to combat the assumptions of Docs? I have thought of writing to medical school Profs.