Does Rheumatoid Arthritis Pain Really Hurt That Much?
Is there an objective way to discuss Rheumatoid Arthritis pain?
Rheumatoid Arthritis pain is being studied in some surprising ways. Did you know that it is considered a “well established” fact that Rheumatoid Arthritis patients have lower pain thresholds? It is believed that they perceive pain to be worse than “actual pain” and that they worsen the perception of pain through their “maladaptive strategies” such as “catastrophizing.”
Back in 1972, the British Medical Journal reported that Rheumatoid Arthritis (RA) patients have a lower pain threshold although it does not affect their disease course. In 1999, the Scandinavian Journal of Rheumatology speculated that the “significantly lower pain threshold” of RA patients may be reflected in changes in their “nociceptive processing system.” By May 2009, Arthritis Research and Therapy reported: “To date, although it is well established that RA patients are more behaviorally responsive to noxious stimulation relative to non-arthritic controls…”
Stop. “Well established” fact? How was it established?
Painful as it was to read, I examined the sixty-six footnotes looking for an answer. Many of the articles had footnotes of their own, so it was an infuriating couple of weeks.
Some of the most galling claims about RA pain
The claim: “The findings suggest that RA patients display a fairly general hyperalgesia to mechanical and thermal stimuli across several body sites.” Hyperalgesia is an abnormally high sensitivity to pain. In other words, it’s a low pain threshold. These doctors claim that “maladaptive physiological responses to stress” play a part in the hyperalgesia of RA.
My questions: How do they know what is a low pain threshold and what is more actual pain? Do they think that pain is a closed system? Do they assume that less actual pain exists because they cannot “see” the disease activity of RA?
The claim: A catastrophizing scale contained items like “I worry all the time about whether it will end” and “It is awful and I feel that it overwhelms me.” The researchers called the scale internally reliable. “These findings suggest that catastrophizing is a maladaptive coping strategy in RA patients. Further research is needed to determine whether cognitive-behavioral interventions designed to decrease catastrophizing can reduce pain and improve the physical and psychological functioning of RA patients” Pain, April 1989.
My question: How does one objectively measure whether pain is “overwhelming”? Is there any level of pain which is sufficiently overwhelming in nature for those statements not to be considered “catastrophizing”?
The claim: Another catastrophizing / rheumatology study at John’s Hopkins says “This review describes a growing body of literature relating catastrophizing, a set of cognitive and emotional processes encompassing magnification of pain-related stimuli, feelings of helplessness, and a generally pessimistic orientation, to the experience of pain and pain-related sequelae across several rheumatic diseases.”
My questions: What is the objective measure of Rheumatoid Arthritis pain which allows them to judge that the pain is “magnified” in the patients’ statements? If the RA patients live with untreatable pain, would it not be rational to feel helpless? If such perceptions of the patients are accurate, are they still maladaptive?
The claim: Clinical Journal of Pain described their 2002 study this way: “This relation was statistically significant even after controlling for actual pain and variability and other background variables.”
My question: How do they know what the “actual pain” is?
The claim: The cytokine IL-6 is associated with “catastrophizing,” with higher levels of catastrophizing being strongly related to higher levels of IL-6. It is suggested by researchers “that cognitive and emotional responses during the experience of pain can shape pro-inflammatory immune system responses…” Pain, November 2008.
My questions: How can anyone know whether the cytokine makes it “hurt more” or whether the catastrophizing makes it hurt more? Could it be possible that patients complain more vigorously because of greater pain? Is it possible that the stimulus itself caused increased cytokine production which created more pain?
RA pain and our bottom line
The claim that RA patients have low pain thresholds should not be stated as “well established fact.” Not every footnote in the Arthritis Research and Therapy article supported the assertion. It was a conclusion drawn from various sources, many of which supported that position.
I even found a study reported in the British Journal of Rheumatology stating that while osteoarthritis creates lower pain thresholds, “other painful conditions such as Rheumatoid Arthritis do not appear to alter the pain threshold.” They certainly did not treat it as “well established” fact.
What is well established is that Rheumatoid Arthritis patients say they have a great deal of pain which is not alleviated by medicine. Either they do or they do not. Either millions of people are “magnifying,” “overfocusing,” “catastrophizing,” and “maladapting” or they are telling the truth that this deadly disease which devastates bone, tendon, and organ tissue is more painful than others realize.
Postblog: When I first realized that this RA low pain threshold theory seems to be the prevailing academic view, I was discouraged. However, it does give clues about some questions I’ve been asking about why things are the way they are. It’s always exciting to find a clue. Read my more sassy reply here: Do Rheumatoid Arthritis Patients Have a Low Pain Threshold?
Recommended reading:
- What Makes Diagnosing Rheumatoid Arthritis So Difficult?
- Palindromic Rheumatism Is Not a Rare Form of Rheumatoid Arthritis
- My Quest for Answers to Questions About Rheumatoid Arthritis
As a Registered Nurse I was taught that pain is “how the patient defines it”. Simply put, pain is subjective and should be treated in a timely and effective manner. I find it infuriating that this is what we get from the medical community. I became so angry I couldn’t finish this article. I expect this from the uninformed community who equates arthritis pain with what they’ve heard in the media: “minor arthritis pain”, but I would have hoped for more from medical researchers. My first thought was, “I wonder if any of these researchers have RA”.
Cyndi, I had no idea that’s what nurses are taught. I’ve met a lot of nurses that minimize the patient’s pain. Are they really told not to do that? I wonder what causes that to happen. I understand how you feel. This topic really bothers me, especially when it comes to kids w/ JRA (see some recent posts on this).
Hi Kelly,
In reading all of your gathered, well researched information on pain and our reactions to it, I have to question: Is there any scientific data on torture that would coincide with what the scientist/doctors/researchers say about RA patients and pain?
How do people handle constant torture? The Chinese used a simple water drop to make people go insane or break down. To me that sounds like that poor tortured soul is catastrophizing that drop of water and overfocusing on the repetitive nature of the single water drop hitting the same spot.
Maybe researching torture is more in line with what we have to deal with than what the well researched RA pain results have shown. But then again as a RA patient I could be catastrophizing the pain we deal with daily. Welcome to the Twilight Zone!
I have to agree with the comparison of severe RA pain to post-operative pain. Last year I had surgery to remove a tumor in my colon and hardly needed to take any of the pain meds for the post-surgical pain. But both shoulders flared up spectacularly and I was begging for prednisone that I couldn’t have because it interferes with healing. Joys. Then I had chemo for 6 months and again, no real cancer pain to speak of. While on chemo, my immune system was surpressed so as the oncologist had predicted, much less arthritis pain during the chemo. 5 months after chemo ended, I am still having major flares all over. It’s more pain than I endured before I quit working, when I had not had a pain-free day in many years.
Hubby has a chronic pain condition in his back and shoulder that doctors have yet to be able to find causes to explain the high pain he experiences. He says, if the pain is in my head, fine. GET IT OUT!
Low pain tolerance my a**.
Mary, I recently had my first surgery and yes, indeed, RA pain is worse for me. Plus, the pain relievers given for surgery were much higher doses than I’ve been offered for RA pain. That makes me wonder whether the doc realizes how much pain I’m in daily.
I call Bovis Defication on this article and quoted related studies! I have suffered from PCOS (polycystic ovarian syndrome) Endometriosis, various broken bones since a young child, impalement, and other various painful conditions. I know what pain IS. For ANYONE to say that I have a predisposition to a lower tolerance of pain can imbibe my sclerosing [figurative] penis. I in fact have a very high tolerance for pain. Those who have NOT suffered from RA have no idea what they are talking about. It IS in fact a painful debilitating disease that ruins you and your quality of life. If you are not in pain or energyless, you are depressed because you cannot physically perform your (what use to be) daily activities and become dependent on others to help you. Life becomes short and is sucked out of you! THEN you are put on immunosuppressive therapy that wipes you out completely! I don’t know who you are or what your credentials are with regards to this subject, but, I do suggest that you keep your masticating muscles shut unless you have experienced this excruciating disease yourself. The only thing I have a predisposition to is Lupus, MS, Cancer, and some other God awful diseases! All in which are hereditary conditions!
CHILDREN are BORN with this disease…are you telling me that they are “magnifying,” “overfocusing,” “catastrophizing,” and “maladapting” their subjective complaints??????? GET REAL!
and this (see above) is coming from a 36 year old woman who teaches MEDICAL TERMINOLOGY, ANATOMY, AND PHYSIOLOGY! So, the ‘jist’ of my post is screw you!
my rheumatologist actuall told me he thinks i have a HIGH pain tolerance. i (used to) run marathons, went through natural childbirth (more or less willingly)…and in my 12 years of RA, i have only JUST succumbed to the occasional narcotic pain relief (when my neck flares….that is the one joint that incapacitates me when it flares).
Sounds like a good doc that’s paying attention to the facts 🙂
Howdy, I have just “found” your blog and face book page (not that it was lost or anything!). I was recently diagnosed with RA, at least that’s what the doc says. At least now I know what’s causing the pain. I haven’t had time to go through all the info here, but I sure will! But on to the point of my response. What the heck to these people know about pain tolerance? Apparently nothing. I know that I hurt. I know that I hurt so bad sometimes that I can barely walk. I know that I hurt so bad sometimes that even sitting hurts, and sometimes I can’t open or close my hands. I have been injured in the past, I have had knee surgery, I have even been stabbed before, and I can tell you that none of it hurt as bad as this. I don’t talk about it much at all, because I don’t want people thinking I am “whining” or “making something out of nothing.” All my life I have been very active, very physical, doing all the things men are expected to be able to do. Long mountain hikes (death marches my wife called them), hunting, camping, lifting heavy things, you know, all the “grrrr, I’m a man, I can do anything” kind of stuff. But now, it is sometimes impossible to even put a nut on a bolt, or even mow the lawn without pain so bad it’s difficult to stand it. It’s hard enough to try and get people to understand, without these so-called “experts” saying that people with RA are just over reacting. Thanks for letting me vent and whine. I look forward to spending a lot of time on your web site.
When I was diagnosed I had some swelling in my knees and some pain but not bad .Several weeks later my right hand doubled in size the pain almost made me cry.My next flare I could not walk for over a week every bone in my body hurt.I am now on Remicade and my flares come often but I can live with them.I called my Dr today because they have been worse and the fatique has gotten me down.He told me to call my GP that I probably have the flu.We all know what RA pain is .I had both knees replaced at the same time and the pain was not this bad.I guess its time to look for a new Dr.
Bob, have you called your GP and what is the result? I don’t know if there are other reasons you might be thinking of but didn’t state in terms of saying you should find another rheumatologist. Sometimes even rheumatologists can have an apathetic, uncaring day. They may be distracted by other things. If you don’t get relief or answers from your GP then contact the rheumy again and state you really need his help. If that doesn’t yeild anything, then yes, find a new rheumy.
doesn’t surprise me that this is a popular view in the medical world.. i believe that if your blood results are okay then the medical professionals think that all is okay even if it is clear you have multipal joint involvement and damge.
I honestly think that if a person without Ra had to put up with the pain in just one of our joints on a daily basis then it wouldn’t be tolerable just to accept and learn to live with it.
.
They start with a premise and leave out critical questions. For instance, if someone lives with pain each day would they not over time develop increasingly negative “attitudes” in dealing with that pain, if it is not ever relieved? Wouldn’t it be a natural response as you have said here? Of course it would. Naturally, when I start having pain my response to it will be negative at first but, not nearly as negative as it will be two years in without relief. Life becomes emotionally exhausting when you live with pain of any kind.
So the question they started with about a “lower pain threshold” is flawed to say the least. Besides each persons response to pain is going to be different. Is it not reasonable to ask if indeed some people are actually having more pain rather than to postulate if it’s somehow the persons “fault” in their response to it?
I find sometimes doctors and researchers take a negative attitude and have a low response threshold for issues with diseases that are long term, degenerative and/or have no “cure” It causes them to feel increasingly helpless and can lead to them being dismissive. I want to see a study that asks if these dismissive blame the person with RA attitudes cause long term harm. Projection of negative attitudes about chronic conditions may be at play here and it’s quite interesting that this question isn’t being asked as a result of these “studies” findings.
Honestly, this is insulting since no matter how you soldier on with RA, over time you will be facing a situation where your attitude isn’t what it used to be. Especially when you become restricted in your activities in life. All of that is perfectly normal. In fact I think it improves a person with RA’s attitude to be understood and told that their response to living with this pain is “perfectly normal” rather than being told they have an abnormally low pain threshold…with it’s implied “it’s all in your head” or “your fault” attitude. This lets the doctor off the hook in some very sly ways and is not a helpful study. Funny how that direction lead to more not helpful studies…couldn’t that time have been spent on finding better ways to control the pain or studying medications that might lead to a cure someday?
I’m going to read these studies. I want to see who all were involved in them…then I want to ask my doctor if she subscribes to these notions. If she does, I’m out of there. I’ve gone from being far, far more active than I am now to having to severely restrict and pace myself. Of COURSE my attitude isn’t quite what it used to be. Of COURSE I have days where I’m down about this. For the most part though the people I know with RA actually face up to this disease with a lot of courage and live with their pain and disease quite well considering.
One puzzle piece here too is that society and even our families many times have no clue what it feels like to have RA and can expect a lot more out of us or be unsympathetic. When someone feels they are not being heard at all that too can lead to a “negative response” That too is normal.
I’m really aggravated by studies such as this one and wonder what the point was. “Don’t have a negative attitude towards pain” And? Trust me researchers..if you live with RA or a similar disease over time you’re going to dislike your pain…how ridiculous to assume you wouldn’t. The bottom line here is that long term pain causes an increasingly negative attitude towards pain. And captain obvious could have told the researchers that quite easily.
Excellent comment DianeHooper! Kelly, you should tweet a link to this comment to the #rheum/#hcsm/raresearch communities.
Wonderful analysis. Thank you, Diane. There is SO much value in just being validated without excusing it away and looking for other explanations. I totally agree with your perspective. I want to add, though, that our developing a negative attitude is one option for dealing with the fact of living with unrelenting pain. I do respect strategies that try and help us to cope and to perhaps experience the sensation of pain differently. Mindfulness Meditation comes to mind as one technique. Vipassana is another method. I don’t want to assume to be headed in only one direction – one of negativity. I want to transcend this as my attitude and my spirit are perhaps the only things I have control over as this disease ravages my body. RA isn’t going to take that part of me hostage, too.
Rheumatoid arthritis patients have a low threshold of pain? I sure wish I was a guinea pig for that study. Ever since I developed rheumatoid arthritis in my knees and ankles, I think it increased my threshold for pain. I can think of myriad painful situations I would accept as trade for RA and the many months I spent unable to walk because of it. I can’t get back those four periods of 6 months I spent unable to walk, but I would let someone chop of my left pinky finger and three small toes with a dull spoon if I could. Sorry for the grotesque depiction – just trying to make a point. After RA, I think I could withstand almost any painful injury, as long as I can still walk. Thanks for your work, RA Warrior.
Thanks Chelsea, I appreciate your response. My mother had this disease and died from complications of her Remicaid treatment at 70 years old. Two years before that she was a very, very vibrant 68 year old woman. She got histoplasmosis, which wasn’t caught early enough and ended up on four oxygen tanks at home on hospice. It only took five days from the time she was taken into emerg to get an antibiotic till her death. Nobody, thought on the day she went in including her that the hospital would keep her for a simple pnuemonia. It wasn’t pnuemonia at all and she was on the ICU immediately. A month after her death *I* was diagnosed with RA too!
So, studies like this really make me angry, I’ve seen someone close to me die from complications of this disease and now I live with it. Low threshold for pain? Both she and I had endometriosis, I had it on my bowel for years without relief. THAT was torture but, I was a busy mother during those years. I was in labor with my son for 72 hours with no pain meds right till the end.
Now, has my attitude towards pain become less tolerant over time with RA? Why, yes, yes it has. If I slam your hand with a hammer every day several times then over time you will come to feel the pain when the time even approaches for you to get hit with the hammer. Maybe, even just looking at a hammer will cause you pain twinges if it goes on long enough.
This study was such a waste of time! It’s quite obvious, my threshold, emotionally and maybe even physically may be lower at times I’ve had extreme long term pain and a restricted life style…all while worrying how long I”m going to live with this disease. I think it’s more than normal for me to grow intolerant of such things at times.
Yes, in a perfect world..our docs and these researchers would be treated to at least a week of an RA flare somehow..studies afterwards would certainly take a more helpful direction. This study seems to be one that could cause harm if a RA doc buys into it…what’s that about “First do no harm” again?
I have ALWAYS had a HIGH pain threshold. I had a c-section in 1983, no pain meds; open heart surgery in 1985 for a birth defect; no pain meds; I have even warned doctors that I have a high pain threshold and they did not believe it was to the extent it was and they actually bruised me during office visits because I felt no pain…only a feeling of pressure. One doctor asked me when I left his office if I was okay; I said “Sure, I’m tough.” he said “Heck I know your tough, most patients would have passed out on the table!” I feel a cut or hard hit; but it just ‘hurts’, it’s not something I can’t tolerate. I think that is why I am now 51 and have just been diagnosed with RA; I feel I have had it for years and just ignored it. I would sleep in the floor when it was at its worst. One doctor asked me what I had been taking for pain…I said “Every night before I go to bed I take a big teaspoon of just deal with it!” Does my RA hurt? You bet it does, but don’t say I have a low pain threshold. I find it insutlting to anyone with RA to say this. We hurt like heck, we just have to ‘deal with it’ the best way we can and keep going because we are afraid if we ever stop we’ll never get going again.
I love that medicine description Candy – that’s exactly what we do – take a big spoon of “just deal.”
You cannot analyze RA pain!! I have severe RA & you can see how my knee cap is 3 times larger. You think I have a low thresh hold of pain? That’s a bunch of bulls–t
I’ve had a heart attack & double bypass and that doesn’t even come close to the the pain of RA.
Let me hit your feet with a sledge hammer & then you walk; you can’t. That’s is what it feels like; a sledge hammer hit my feet. My hands are red swollen & hot; do you think I have a low threshold for pain?? I think NOT.
You don’t know pain like RA pain unless you have RA.
So your study of pain is a crappy opinion.
Well done, Glynis.
I have rhuematoid for 3 years now. I have tried a few differnt kinds of meds. I have so far been one of the lucky RAer’s in that not every joint hurts at once. But this summer we had 90-100 degree weather from end of June to the 1st of September. I guess hot weather and humidity is awful for me and my RA. Any wayI told my Ra doc about it and she wanted me to try Arava and stay on Methotrexate. I asked to wait until my Dec. appointment. So to make this a little shorter I was wondering if any one has taken both of these at the same time? If so, any complications. thanks so much.
Steph
Low pain threshold?? Really?? Pardon me for a moment while I laugh uncontrollably…
Okay, I’ve had RA since age 5 and learned very quickly to minimize my discomfort, stay silent about it especially in school. Kids were cruel enough, not to mention the teachers who simply didn’t believe me and thought I was just lazy.
A certain amount of pain is like ‘white noise’ for me. I learned to ignore it and move on. In fact, when my rheumie asks me about my pain level, I have trouble quantifying it. Anything that raises its ugly head above that white noise level is dealt with. Everything else – ignored. Which in the long run, may not be the best thing, because we might miss symptoms of a serious disease that could have been caught early.
Low pain threshold? My sister doesn’t have RA but can’t stand pain of any kind. She practically has to be sedated to have routine dental work done. Childbirth? Forget it – she had an epidural practically from the first contraction.
Even my own husband, who is very supportive of me, has trouble believing me when I actually do complain about something. “Are you sure it’s that bad? Are you sure you’re not just blowing it out of proportion?” Uh, no. Yes, pain of a single tendon snapping across a nodule in my finger CAN bring me to my knees. If he knew the level of pain I ignore on a daily basis without complaint, he wouldn’t ask me that.
Sometimes I consider going ahead and complaining about every ache and pain, but you know what will happen? Eventually *I* will become the white noise that everyone ignores. No one wants to be around someone who complains all the time. So again, we learn the bitterest lesson of all – silence.
Hello, I am the “man” part of “woman” and I have had RA ‘officially’ for just over a year now.
This is a very good site and I am glad I found it, I don’t know anyone else with RA.
I too have had pain in almost every joint at once and have been told by the RA doctor that other patients don’t need pain medicine why should I? “No, I will not prescribe it for you” – He said this while I was hunched over in his office, groaning. How humiliating, I couldn’t walk normal or stand up straight. I had never complained about hurting before and was surprised at the response. I had to feel this way for a year.
When I tried to tell some other doctors that the RA pain was worse then ALL the following:
I have had my neck broken, been in a bad car wreck, crashed a motorcycle and broken the shoulder (pushed out the front of my chest from its socket) ripped the muscle from between my ribs, smashed an ankle which swelled up so bad, they had to cut the boot off, broke several bones in my hands and feet – yet, telling them all that and only (1) doctor finally decided to try to help.
He even found it hard to believe & understand the magnitude of pain. We worked our way into where I was taking morphine, a large amount of it, until I found out that pain medicine does not work at all for (me)RA. I would lay awake for weeks at a time from the pain. I started to hallucinate from the lack of sleep. Thank God for prednisone.
I can understand where I read when someone says they want to “end it all” from the pain. It has nothing to do with depression, just that the pain is so bad and unrelenting, one wants it to stop, that simple. This is something the doctors don’t understand when they brush it off with a wave of the hand.
Sometimes I think bad and wish the doctors could feel the same pain for just a day.
I would like it if they would MAKE doctors read stories such as I have read here today, to understand even a little of what it means to have RA.
Lastly, I would like to be as tough as you ladies are, I am still trying to do things with this pain and sometimes I feel real bad and stay in bed all day, reading your stories here makes me want to get up and not let RA beat me. Thank you.
How do you response to the doctor or his staff when they ask you to rate your pain on a scale of 1 to 10? Often my pain is not as bad in his office since I have been sitting there doing nothing but as soon as I get home and start moving around I will turn into the wicked witch from the east, west, north, and south all at one time.
I also don’t want to rate anything a 10 since I don’t yet know just how bad this pain or any other pain can become. The very idea that I feel pain more that someone else utterly amazes me. I have worked through terrible migraine headaches all of my adult life and know what pain is and can be. This is just a different pain coupled with the lack of being able to move easily.
Any suggestions on how to talk to the doctor would be appreciated. I don’t want to sound like a hypochondriac.
This article infuriates me. It sounds like my former Rheumatologist wrote it. Pain is subjective. We are all wired differently. I have a hard time quantifying my pain because most days, I just deal with it. I just deal with it and not say much of anything because I feel most don’t care or they want to compare it their pain or say something totally inappropriate. For example I was told by my former Rheumatologist, “All of your blood work looks good, so you should not be in pain. It’s not RA.” My concerns and complaints to him were dismissed. He made me feel like I was nuts. It was like he was calling me a liar with out coming out and directly saying it. This is why I don’t say much.
I remember when I was first diagnosed. I had felt like I had the flu for about 2 months before I went to my dr and he found that I had RA. The pain was, and still is, like When you fall and skin your knee very badly so that you hurt when you bend your knee and the pain goes all the way through your leg. But it is all your joints. At least when you fall you have the skinned knee or elbow to show for it. With RA it’s like the scab it huge and on the inside of every joint.
Thanks, Nancy. Good description. An injury is really the best analogy, I think.
This is on the forefront of my mind today as I read yet another article by medical people saying we have no “sharp” pains and that a large percent of us are in remission – an article of lies that prompted me to call my best friend who’s known me for 14 years – and believes RA as much as anyone could who does not live with the pain – I just needed to talk to someone who would validate me after reading once again that we are all just exaggerating and that RA pain is actually a “mild dull ache.”
With regards to the pain threshold, l feel l have a higher one and with having RA since 29yrs old now 50yrs, l deal very well with the constant pain or knawing pain at my body.
l think that this the part that people find hard rather than the headache that will go away once you take a pill, where the RA medication numbs the pain but it never goes away !! we are given a raw deal on how we feel sometimes!!! as we still have to deal with the ever day things, can you imagine having constant headache and dealing with lists of to do, dealing with the kids, loud music, meals to organize, shopping, l am sure many people would be complaining. Yours truly cheery disposition!!
Here’s my take: The vast majority of patients with RA are female, and there are endless studies pointing out that women with pain are NOT taken seriously by MDs. It’s all in our heads…why women with cardiac systems aren’t taken seriously, women with major cancer pain aren’t taken seriously and on and on.
I suspect this is also true for men with RA since it’s a gendered disease. We’re just a bunch of whiny females (total SNARK!)
To Whom It May concern,
I am an RA sufferer, and i dont think that its fair to assume the pain that we go through – i am also researching the disease and possibilities to reduce pain.
I honestly believe that no-one knows exactly what an RA patient goes through unless they have the illness. sometimes perhaps our pain is lighter than other days – but most of the time its a haunting pain that makes you imobile and restricts so much of your ability – the things that you take for granted all of a sudden become a challenge – perhaps you believe our threshold for pain is lower, i personally think that it is not – i have been for chemotherapy, bone marrow transplant various joint ops as a cancer sufferer for example its chemo and radiation right? and ops wherever possible – the funny thing is that cancer does not pain but when you look at a cancerer sufferer being all weak and unable to do things – imagine that with 10 fold pain and then you’ll realise what an RA patient goes through…. dont get me wrong – i dont have pain everyday…and im not bed ridden everyday, i love the fact that i have a purpose and it gives me the stregnth to wake up everyday – yes there is moderate pain and at times you must understand that the pain experienced is unbearable and all you want to can do is take a hole lot of painkillers and sleep – my point is just that unless you dont have it or never experienced it – i dont think that is fair to assume it… many people have to deal with this struggle mentally, emotionally, and now to say that RA patients have a weak threshold for pain is mereley adding to that list making it seem that we want pity – its not the case in many instances we dont go anywhere to inconvenience others good times – i myself prefer some quite time at home… no-one wishes pain on any other human being no matter how mild or how severe – i just think by using these comments and the way that these articles are written you are adding more pressure and causing me emotional trauma.
i sincerely hope that you can Understand where i am coming from and try and understand it from the ‘horses mouth’
This whole argument gives me a pain–not a physical one, but a mental one. If I didn’t have pain, I would maybe have a life that is fuller than the one I have. Slowly over the years, I have had to give up things that were enjoyment to me because the body either would not even do that way more or the pain of doing it was enough to totally defuse the pleasure of the activity. I have two levels of pain right now–Good day–I can get up and do something–bad day–in the bed with the covers over my head. Of course, there are grades of each. Can I clean the house? No–mostly I can’t except in such little amounts that if I relied on this it would not ever get all the way clean before the first cleaned spot was dirty again.
Right now, I cannot write anymore as my fingers are red swollen and yes PAINFUL.
My goodness! My worst pain in life was slamming my finger in a car door. I have had c-section (awoke from anesthesia feeling as if stabbed),
broken mid foot in car wreck (didn’t hurt til I stood on it in ER) pulmonary embolism, numerous blood clots and phlebiitis, pseudotumor cerebri, and Rheumatoid disease since age 30, now 50. I think the context matters how I cope. In the car-door, I felt trapped, as if the electric shock through my body might not be stoppable. It happened maybe 20 years ago and
did not fracture. But WHILE I WAS IN IT, it paralyzed me, psychologically. Pain stops me. And everybody who experiences it wants it to stop, now. I would rather experience any pain I’ve had than the old car-door finger slam. I hope I never have another experience that white-hot and uncontrolled. Walking the airplane aisles 4 times last year, as an attempt to follow my spouse/caregiver’s new job DESPITE WHEELCHAIR BOUND 3 YEARS, began to approach the car-door in my damaged knees/hips/feet/ankles/back. Those who have episodic pain have NO idea of living in chronic, unremitting pain. When I realized I COULD NOT ESCAPE autoimmune disease pain, I began to freeze my body motions to lessen it. Making me move against the damaged joints takes me to the 10.Every time.
I agree Jamie. Imagine if your livelihood was to fix the unfixable, maybe you would begin to tell all your customers that there was nothing wrong. The brokenness is all in their heads…These well paid professionals are probably frustrated with the magnitude of the unmoveable situation. They are taking their frustrations out on us victims. Someone should study what happens to high-status workers who are continually failing to “get the job done.” If they’d admit there was nothing they know to do, both doctor and patient could move in reality, and cope better with this awful condition.
How offensive to read these “scholars” of which none probably have ever had RAD. I like that word much better!! Low pain threshold, ARE YOU KIDDING ME? Living with RAD, many, many surgeries later, an anular tear in my disc in my back, yet everyday I get up and I get things done – I wish just for one day one of those individuals who wrote some of those articles could feel just half of OUR pain I bet they would recant their articles! I am so glad I found this site, THANK YOU!
yes Lisa! and we need them to understand because these are the ones we are counting on to find answers & relief of our suffering!
Wow. Ok, so I read this entire piece of https://www.rawarrior.com ‘s blog on this subject. My first emotion was, of course, rage. How dare they tell ME what MY body feels like. Then I slipped into sadness, for if this is truly the belief of the medical “experts” or establishment, how will we ever find a cure? The sadness extended to how the public, friends, some family members and even I, sometimes see us (myself). Yes, there are times when I wonder if I have a realistic view of my disease. The sadness was followed by an almost despair. Feelings of disrespect, being seen as a hypochondriac or malingerer by the general public and by some “close” to us. I am not talking about anyone currently in my life, as I have pretty much shed those who didn’t/couldn’t hide their disgust/disbelief as I have no need of them in my life. It’s hard enough without feeling the need to CONVINCE someone that I AM sick and that I AM in pain. The despair was pretty quickly followed by anger again, along with a touch of obstinacy and more than a healthy dose of “kiss my ass-ed-ness”. I have been through a lot of pain in my life. Not the least of which was childbirth, done naturally (NO pain aids), for 17 hours, with no Lamaze tools, for the most part without support, and with contractions exclusively in my back (I say exclusive because I cannot remember what the uterine ones felt like as they were blotted out by the back). The back labor felt like someone was trying to bend me the wrong way and snap my spine in half. That was a very long time ago, and yes, I still remember the pain. My pain now, when someone gently squeezes a knee (doc’s gotta palpate yanno), outdoes that childbirth. It may not last as long, but it is just as intense. I had one doc (not my rheumie doc) thought she was gently squeezing my knee, when I burst into tears and moaned (I don’t make noise when I’m hurt). She said “I barely put any pressure on your knee, is it really that painful?”. I replied “yes”. She ended the exam and told me to see my rheumie instead (I went to her because I couldn’t get in to see my rheumie for several months). My point is, how would you feel if the very people who are supposed to help you and research a cure for your deadly disease, didn’t believe you even had it? Kind of an extreme comparison, but then RAD IS extreme. I do NOT want your pity, or your “there, there’s”. I simply want you to believe me. The sad part is that the people who NEED to understand and believe, won’t be the ones reading this. *SIGH*
Kelly, this is the comment I followed your blog with on my FB page. Again, I thank you for the information. We NEED to hear it though it is painful, discouraging and upsetting. We can’t fight it if we aren’t aware of it :).
(Thanks, Raini. I did read your comment when it posted – but I’ve been too busy to type any replies the last few days.)
Thanks for what you posted on FB! We can all so our part to provide a clearer picture of what is really going on & explain how this mess of misunderstanding came about. You’re so right: it’s such an extreme disease that we somehow get a reputation of being extreme patients instead.You did a great job explaining.
I use methotrexate for my RA. I just quit using plaquenil that I have used for 15 years. They are concerned about my total intake of that. I have lived through severe endometriosis, ovarian cysts, migraines, and chronic sinus infections. My RA pain would wake me from sleep. The pain was so intense that at times I thought I would vomit. The heat of my inflamed joints could be felt inches away from the joint. Pain medication for me just never touched the pain of my RA. I am 47 years old and have had lupus and fibromyalgia since I was 19. The RA was diagnosed at 33. RA pain is different than any other pain I have ever known. I have dealt with a lot of other issues, the RA pain difference is NOT in my head. Just ask the people who have been around me my whole life.
I want to find a dr. that has RA,thats the only way they will ever know,what it feels like….
I wish I had a dollar for every patient who has told me that. 🙂
o and on top of things I have shingles!!!! so I cant take my methotrexate or humira shots,,,,been waiting 3 days for dr. to call me with some answers…..
Well there you have it!,
I thought I was just not tough enough to hack it. Now I see that I just “feel” pain more easily. So what are we supposed to do? I ruined my back in the Marine Recons in the ’70’s and they said it was because I was a non-hacker. Then how did I get in the RECON’s to begin with? Or the Marines for that matter. I put up with my back until 2003 when I had 3 lambinectomies, and four disk fixes, but kept working full time. In 2007 my RA triggered and it kicked “my” ass. I defy them to call me more sensitive than the general public.
-Goat
My rheum actually commented that I had “unusual tolerance for pain”. Just sayin’. How can anyone look at all the swelling that comes with RA and say there’s not pain? This seems to be an extremely subjective area and everyone’s tolerances seem to be different, but I find comments like “Does RA Pain really hurt that much” to be extremely ignorant and ridiculously unsympathetic to the millions who have this disease.
Sounds familiar, funny how every illness has a different treatment except when it comes to the use of either SSRIs or CBT. The CBT business is out of control, they’re using it for everything now, kind of like a lucky rabbits foot or clicking your heels and saying “there’s no pain I’ve known” they think if you wish hard enough it will go away.
My latest experience of it was the pain clinic (who you’d think would know better), they took all my meds off me except paracetamol (which hasn’t worked for me for over a decade) skipped over physical therapy and signed me up for a CBT based program. I lasted 3 days, it took 2 weeks and higher doses just to get things under control.
Problem is CBT is attractive to the medical profession, it promises everything and being completely subjective, self refering and circular in its reasoning resists attempts to prove it doesn’t work, kind of like how a cult works. It also irritates people enough they go away and don’t come back, I do sometimes wonder if, from the practitioners point of view, a non returning patient = problem solved to their mind.
Wow..Kelly..I don’t know why I have never seen this post…it is so very timely. I have also fund that most Rheumatologist’s can not even grasp the level of pain that most RA patients suffer from on a daiy basis. I have been accused of exaggerating my pain, being a drug seeker (when I never even asked for any medication ), I was told my diagnosis was wrong because my blood work was negative so the pain must be in my head, meanwhile I suffered from pain tht made me crawl to the bathroom in the morrning. I was going down stairs on my fanny because I could not walk down the stairs…currently, after finally getting a rheumy to,listen…. I have to be maintained on Steroids while they scramble to find something that works. I switched primary care docs, and I currently have a nurse practitioner. She is a saint…she sat me down and talked pain…she wanted to know how I was doing with my pain! Someone actually asked and actually cared….she said to me…RA is one of the most painful disease on the planet ….you deserve to have a total treatment plan for the management of your pain. Currently I have Tylenol 3 for break through pain…I am on methotrexate and Remicade which is not working…Actemra might be next….one of the hardest things about RA for me, sadly, is not just the pain (which is horrific) it was the crushing reality that people and the vast majority of medial professionals do not understand RA…it has taught me to keep fighting and to believe in myself….but it has been the hardest battle of my life!
Low pain threshold???? I went through natural childbirth TWICE. Low pain threshold my patootie!!!
Wow, I don’t know anyone stronger then my husband, never makes a peep when going through so many painful procedures.
I remember my rheum doc telling me that a finger injection would hurt too much for me to endure more than one of them. Yes, it hurt but no differently than those fingers were hurting already all day long every single day. Another time, my shoulder was injected and like your husband, I didn’t flinch. The MA was shocked: how does she not feel this? It hurt a lot, but it hurts that much all the time – so we adjust.
I do hope the medical professionals who treat our disease do not continue to think this way….my personal Family Nurse Practitioner certainly does not. (thank goodness, maybe things are changing?) My new Primary Care Nurse Practitioner treats me for the pain due to RA and not my Rheum Nurse Practitioner. I had been so used to having my medical providers dismiss my RA pain….until I switched my primary care…at my appointment she said to me….now we have to treat your pain…I said really? Why would I not treat your pain with a diagnosis like RA…RA is one of the most painful diseases on the planet! I almost broke down and cried! I thought, my God! Someone sees how painful this disease is and they are finally not looking at me like I am being hysterical or exaggerating my pain!
I have heard of a few wonderful experiences like that Susan and you know what, hearing your story? I think I would cry if a dr ever asked me about my pain level or discussed whether it could be treated. Like you, I brought it up, but was dismissed over and over. I’m not sure but maybe they think it would make us give in to the pain if they acknowledged it? Whatever the reason, it’s cruel to dismiss such severe pain as RA. You’ve probably already seen them, but for anyone else reading, there is a list of posts here tagged RA Stoicism – https://www.rawarrior.com/tag/pain_tolerance/. Ironically, this is the norm w/ Rheumatoid patients and these researchers have it exactly backwards.
I would love to know, how they chose the patients sampled in the various studies. How long did it take for the patient to receive an accurate diagnosis? The longer one copes with symptoms, without identifying the actual cause, exacerbates fear, frustration, and hopelessness. Were the patients newly diagnosed? Had the patients been coping with the disease for many years? Do the patients have strong external support systems in place, or are they muddling through on their own? What were the treatment options available to the patients sampled? Those diagnosed prior to the year 2000, had very limited options, with extremely limited results for severe cases. And, it has only been in the past 7 years or so that a broader, more effective assortment of treatments have become available. Even with that said, what about the patients who do not respond to current treatment options? There are way too many variables to apply a blanket statement of mass patient “catastrophizing”. It’s insulting, and adds to the perception that people with rheumatoid disease are hypochondriacs, with low pain tolerance, and whatever else can be thrown in there to make us look like whiny complainers with lousy coping skills. If our pain can be minimized by stating we are all prone to catastrophizing our condition, how can those creating medications accurately measure how well their product will help with symptom relief? Afterall, if are symptoms aren’t as bad as we think, then we probably don’t need as much relief as we seek.
I kow this is an older comment, but I just had to reply to it because this is what I was thinking. If this disease were more gender neutral, I honestly think the pain issue would not be questioned as much. Womentate historically dismissed when it comes to pain. I feel sorry for the women and men that have their pain dismissed because ofthins stupid bias and dismissal.
I am recently diagnosed with RA with RF and anti-CCP very high and with random joint activity that is very painful. The first time was about a year and a half ago when my shoulder just started hurting…by the end of the day it hurt so bad that I could not lift it and could not put any pressure on it. Thankfully it went away in about three days. Me? I didn’t even go to the doctor because I had lived with chronic intermittent back pain for over 20 years and knew most doctors told me to take NSAIDS or muscle relaxers and I had both on hand. The last year and a half, with various joints being hit and then they would be ok, I finally started going to the dr. After about the 4th time, a PA (who I had to see since my own dr was booked) knew right away what was going on, put me on steroid pack, ordered blood work and made the Rheum referral. But, only a very mild pain relief was given. It took 2 months to see the Rheum, but luckily the blood work was done and so I was instantly put on mtx and low dose steroids. But the pain? Nothing for that.
It was my own sweet husband who said, “I am given any pain med that I want when I have a gout attack, I get tons of sympathy, the pain is excruciating, and I can tell that you are hurting just as bad when this hits one of your joints.” YES! That is how I feel. I am blessed that at least he understands.
The idiots who wrote this forgot one very basic fact. People with RA live in a world of pain. Using ‘their painscale of one to ten, a person without an injury or serious/chronic illness on a daily basis is at a 0 on the scale. A person with an injury or illness that causes pain is at constantly some number between one and ten. Any logical person would understand that if someone is at 0 on the pain scale and received an injury with a 3 rateing is going to shake it ofg fairly easily
I find this ludicrous, as my PCP, who had been treating me for over 20 years has told me repeatedly that I have an extremely high pain tolerance. I do see how living with pain every day could make us more sensitive to ‘new’ pain. I just think they are ridiculous to assume that we have low pain thresholds to begin with. Thanks again for monitoring the powers that be!
I too have been told of high pain tolerance. In fact just last week at my Rheum doctor, she told me she was going to watch me closely because I had been off Methotrexate this summer and I had told her about a verly busy two weeks I had and how I had been working so hard. She told me she didn’t know how I did what I did in that 2 weeks because my swollen joints were telling her something different. I can’t understand how docs can be so different. Especially Rheumatory doc??? I have been blessed with mine!
I find this to be absolutely untrue by my observation as a RN who worked on the oncology ward of a hospital giving chemotherapy and as a RA patient. I had a total abdominal hysterectomy in which they cut me from hip to hip. The strongest medicine I took for that was 1/2 of a Darvocet. The doctor was amazed at how tough I was and told me I must have a high threshold for pain. We are taught in nursing school that pain is what the patient says it is because we all experience pain differently. All medical personnel are taught this in training. While dealing with cancer patients, no one ever questioned if they were “catastrophizing”! Yet, my Rheumatologist tells me the bone pain I am experiencing is comparable to that of a patient with bone cancer. Sigh, I guess it would be out of the question to smash a researchers hand with a hammer then ask them to perform their normal duties and not complain because they have a low threshold for pain? :/ I promise you as a nurse, I have seen what low thresholds of pain look like and there isn’t a RA patient alive that could tolerate the daily level of pain we have to endure and have a “low threshold for pain”. If that were true, you would see an alarming rise in suicide rates among RA patients. The research is inaccurate and insulting.
Hi,
Thanks Kelly for the blog post on pain. It is very timely. I’m attending an arthritis day treatment program. The physical therapist was stunned that I had tears as she was manipulating joints that I told her felt like they had severely torn ligaments. That’s the best way I can equate the new pain I’m experiencing as this disease continues to ravage each part of my body. When it hit my temporo-mandibular joints (TMJ) along the jaw line, I mentally scanned my body and thought – well, I hope from toes to head – the TMJ is all of the joints that can be involved. Today my vision is very blurry and eyes very dry. This is increasingly worse. During the team meeting after all the assessments, the physical therapist referred to the perception of pain in similar ways that you describe in your blog.
Anyways, what I do with all this information is simply this – I know my truth. I know my integrity. Those who know me and love me get it, those who don’t don’t. I saw an Oprah interview with Flo Jo’s husband. Florence Joyner was the Olympic track and field star who died suddenly at age 38. Flo Jo’s philosophy was that she couldn’t kick every barking dog along her path or she’d never get done what she wanted to get done in her life. I try and keep a larger perspective and judge if the professional I’m working with is critical to my patient care. If they’re not, frankly, I don’t waste my reduced and precious energy worrying about them. I also never set-up an us-against-them scenario. The professionals have varying degrees of compassion and understanding. They are ALL trying to treat this disease with us and for us. Some might be more enlightened then others so I pray for those who appear hardened or not compassionate. The physical therapist I mentioned will only be on board for one more session than there is another one who takes over. In the big picture, her opinion doesn’t matter.
That being said, I LOVE that ra warrior continues to collectively fight misperceptions of RA and to do all that can be done to move the science of diagnosis and treatment further along. Have a blessed day !!!
I was in tears while reading this. Low tolerance for pain ha! I get dental fillings w no pain meds. I was in excruciating labor w my 1st child for 29 hours. Twenty yrs ago I saw the devastating effects of RA on my aunt. She couldn’t even tolerate the weight of a sheet on her body. Now im living w RA and feel the pain and I’m not crazy, it’s real. I can’t dance anymore, i can’t ride roller coasters, and as my body is right now I dnt know if I will ever teach again. So for.somebody to say that I’m exaggerating feels like a slap in the face, HOW DARE THEY!!!
Wow….Pain has been a part of my life..Im 45 and have RA…yes everyone is different, but I can tell you that even with pain meds some days lattely just plain bite, where pain is concerend.When a person is having pain day in and day out, its only natural for the body to reach the point of it hurting worse. I really wish the people who write this stuff would stop thinking inside the box. I understand that all kinds of people and addictions are taking place because of pain meds, but please…people not suffering is the key here..no animal or human deserves to suffer or let me say it differently no human should have to indure physical pain if it can be helped through exercise, meds, and diet! Thanks RAWARRIOR
I sit here in pain day in and day out like most of our RA’ers that tells me that we have a high pain threshold, how else do we survive, by being warriors
Really?
I am 34.
When I was 12 I experienced a ruptured ovarian cyst, which manifested three days after the painful rupture as appendicitis-like symptoms (so much so that I was rushed to the ER from an appt with my GP). While ruling out appendicitis it was discovered that I had a congenital defect on a kidney that required surgery. three weeks later I had Half of my kidney removed. I’ve been bitten by animals, injuries which resulted in surgeries. In 2001 I suffered for 6 months of passing gall stones because the idiots at the ER didn’t do a scout CT or ultrasound before doing an upper GI CT with contrast (the contrast obstructed view of the stones). In 2005 I was in a car accident that ruptured my rotator cuff, but continued to work as a vet tech (wrestling 100 pound animals every day) for 11 months because it went undiagnosed.
So, for 5 years, I dealt with the pain of my immune system attacking my body because I’d been told nothing was wrong. Yes, the pain is bad, but I have been through worse. What sucks it never ending pain, WITH horrific fatigue.
Yes, the pain I feel daily is bad, but I’ve had worse. My threshold for pain is HIGH! These idiots don’t know their @$$ from a hole in the ground.
When I was a child ( I am 68 now) my uncle who had RA was very ill every day. The pain he was in was apparent, It was visable and extraordinary. I was told by someone that there was a RA personality. I never understood whether the ” personality” was a result of the presence of RA or the RA was a result of the “personality”
But later as I learned about RA it seemed to me that to some degree OCD was a component of this RA personality. My uncle was both obsessive and complusive. He was particular about where and how things were placed within his environment and ( it seemed) overly concerned about cleanliness.He didn’t like to be touched or assisted physically with the struggles of opening doors or puting on his shoes or overshoes and coats. He was extremely controlling and short had little patience with our youthfull energy and bouyancy. I know now from my own experience with RA that the RA personality is dictated by pain and disability and the incessant private grieving for a painfree existance that we once knew and enjoyed. I do believe however that most people involved with the care or management of RA patients think we are hysterical and RA magnets…. but we who suffer know better and it is a struggle to make them understand the truth of the condition.
Everyday I live with a level of pain that would flatten a lesser mortal and I do it without painkillers (due to my morbid fear of addiction paired with decreased drug effectiveness over time) . I do not have a low pain tolerance, au contaire, I have an abnormally high pain tolerance,as attested to by several physicians …I have learned to live with this pain, because most drs don’t know how to treat it, don’t believe it can be that bad, or that as the article states I am over dramatizing and so on. I have also learned to go through my day without complaining or even mentioning that I hurt…because then I would be labelled lazy, a complainer, a whiner, a hypochondriac, a malingerer etc so Like many others, I bear the pain in silence…but believe you me…by the time I go to a dr for pain…it’s bad…and the drugs better be good ones. I have had pain so severe I could not remember my name or where I lived and if I had been able to pick up a gun, I would not be here today.
Oh how I would love to give those guys some pain. I was a cop for 5 years, so I know something about pain delivery! But seriously, all my life I had an extremely high tolarance for pain – one of the things that the doctors told me probably slowed my diagnosiss for years and allowed my erosions to get as bad as they are. They guestimate I was living in pain for over 10 or 15 years before getting diagnosis and treatment. I take pills when I need them now, but try to limit them still. I do have to get work done you know. God bless everyone, even those delussional academics.
Your experience of delayed diagnosis and high pain tolerance is what we see as typical when we poll patients or examine their comments or onset stories, John. These academics have missed the mark by a mile, bless their hearts.