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
I beleive my pain experience is quite the opposite. I am told that i am very “stoic” about my RA pain. Yet in my pre-RA days, i used to have an extremely low threshhold for pain and shared it quite openly. you are so right to challenge this entire line of worthless research. Let’s get patient driven research out there with our new found organization!
Good point Cecilia. Stoic is one of the most common characteristics in RA patients. There’s a whole list of posts on this site discussing the topic https://www.rawarrior.com/tag/pain_tolerance/
I assumed it was ‘just me’ as with other things when I started writing 4+ years ago, but after contact with thousands of patients, it became obvious what is typical, such as this stoicism.
This is interesting. I think of myself as ignoring pain to the point of not reporting symptoms that I should tell the doctors about. Of course no study is granular enough to get to what every single person with a painful disease feels, but for the most part the people I know with auto immune diseases power through life despite their symptoms. I generally think of us as being some of the strongest people I know. When a person hurts a lot of the time there are two choices, live your life or go to bed. In most cases it seems like we continue to live our lives to the best of our ability. I always think of us as warriors or soldiers pressing on to win the battle as much as we can.
I was totally angry when I read this post. As others have stated I had three nature child births with no drugs at all. One was when I had a herniated disk and had to have back surgery a couple of months after she was born. This article is insulting to say the least. I have been told by many people that know me, including some doctors, that I have to have a high pain tolerance with all I have gone through in my life. My RA came on fast a year ago and within a few months I was completely bedridden. The pain WAS overwhelming. After months of success on methodrexate, it stopped working and I then had a reaction to it and ended up in ER with respitory lung failure. I almost died. I spend 3 days on a breathing machine and tubes down my throat. I was in the hospital for a week, recovered and developed broncial infection and pneumomia. I am starting to do better now, finally. The RA is probably the worst pain I have experienced as it never lets up. You have to plan your life around how your day is going to be.
This article does explain my doctor’s casual attitude when I go in for appts though. I have felt for awhile that only nurses that have had a personal knowledge of the disease should be allowed to work in an RA office. They have no idea. I don’t know where these so called re-researchers are coming up with this stuff. I am the perfect example of a RA sufferer with a High pain level, so I think they need to go back to the drawing board and get serious about learning about this disease! Okay, I’m done now.
I don’t know why I just saw this article but I did and like all of you, I am mad, pissed off, angry, etc at all I have read. Like just about all of you, I have had my share of pre-RA pain. How about 3 full days and nights of back labor with no pain relief (not that I didn’t want it – I had the misfortune of living in an Arab country at the time – I am American – so not only was I a female, I was an American female so I deserved no consideration)…and then they have to shove forceps all the way up inside you and pull that 9 lb’er out of you. How about 9 bowel obstructions ( yes, NINE) all needing surgery, how about 2 brain surgeries….have you ever thought your head would literally explode? I am not try to out-do anyone on prior pain filled incidents at all….just agreeing with all of you that we have all had some extremely painful incidents in our lives and have lived to tell about it. I think I may be luckier than most because I had/have a positive RF test and positive ANA – at least no doctor can tell me I am pretending I have RA or pain like the poor sero-negative folks with RA. But the pain, oh the pain….can any one of us remember the last totally pain free day we have ever had – I can’t and I have been officially diagnosed with RA the last 12 years – and I KNOW I had it for a few years before that but the docs refused to test me. I still thank God for the new rheumy who said “Hey, let’s test you – it’s only a blood test” – BINGO! Like all of you, most days I soldier on and I don’t complain – hubby can tell because of the way I walk, or sit or try to get up…..or just the pain and anguish on my face. My wish is for God to give every doctor (rheumy or not), one 24 hour period where the pain is so severe that they can’t get away from it no matter what…they might get an inkling of what we go through most days. Two weeks ago my hubby had a bad accident and has been mostly bedridden since then – for the first 4 days I was able to take care of him mostly….then a cold snap happened and just that, brought me to my knees – literally I could not walk and every joint was on fire. I managed to hop to our front door and unlock it and kind of hopped/hobbled back, crying with pain. I called a blessed friend and said the door is unlocked…..can you help us? Now who in their right mind would go through all this if it was all in our mind? Do you think I want any of my friends or family to see me like that? I couldn’t even shower for 5 days, I am sure I must have smelled awful and looked like a bag lady…it was degrading and I was helpless to do anything about it. I was totally bedridden for a solid week (alongside hubby) – said friend brought food, drinks, etc every day and I know how blessed we are to call her friend. And if I have such a low pain tolerance, why don’t I get high when I take the narcotics? Don’t people with real pain get some (maybe) relief from the narcotics but no high? I have never, not once, gotten a “high” off a pain med. People say “Oh Lordy – I would be knocked on my ass or totally out of this world if I took a narcotic”…no, not me – it just takes the edge off – it doesn’t make me feel good or high and it never, never, takes ALL the pain away. And I am at the point lately, where it isn’t even taking the edge off so I can function most of the time. And like most, I hate to even tell the pain mgmt doc that because I am so afraid he will think I am a druggy looking for more or higher doses. I want to get OFF the meds but I cannot function a lot of days without them. So, I am incensed that people with NO knowledge of our pain, seek to label us….I want my old life back……but I know that will never happen. So all we can do is soldier on when possible, and take to our beds and pray for death on the days we can’t.
My rheumatologist told me that people who suffer chronic pain DO feel pain more than other people. But she explained that the pain receptors are so accustomed to feeling pain, that they begin to pick it up at lower levels. So, pain will feel worse for chronic pain sufferers because their brain is so adept at picking up pain signals. What she explained seems more plausible than a maladaptive coping strategy.
Jody, sorry but I really don’t buy the centralized pain theory. It’s simply a theory with very little evidence. Sometimes the label of centralized pain theory becomes associated with a mental health issue i.e. depression, somatic symptom disorder rather than focusing on the physiological deterioration of the body.
My theory is an obvious one – there is incredible pain associated with the deterioration of the cartilage, ligaments, muscles, tendons, and tissues in the body. End of story – no friggin’ magnification, catastrophizing, amplifcation, maladaptive responses, centralization, etc… IT JUST IS! Acceptance of this simple fact allows compassion rather than the distraction of trying to explain it away. I have had only ONE doctor who looked me square in the face and said “I’m sorry for your suffering”. No need to complicate it.
What a bunch of misused words. I would like for some of the writers to experience what I have and then tell me I am over emphasizing my pain. Don’t they realize it’s not JUST pain, but everything included; total exhaustion, discouragement, nausea, painful injections, so many side effects from the meds. Tell me about YOUR pain now that you have RA like me.
This makes me absolutely furious. The pain is real. I broke my finger in two places a couple of years ago but didn’t go to the doc because the pain was no worse than a flare. Though maybe I had triggered a flare with the bruising the next few days. Finally went to the MD a few weeks later when the flare wouldn’t go away despite the bruising and swelling gone. X-ray showed I hade broke the bones long ways down the center. Doc asked me why I hadn’t come in sooner to get it set when she could of done something. I told her I hurt like this all the time, didn’t know it was special.
They want to know how Rheum pain feels? Tell the to break a bone or two…it feels just like that!
To me, RA patients do not have a “low pain threshold.” RA flare ups are VERY painful when the medication(s)that are prescribed to an RA patient are no longer working. I am currently taking Hydroxycloriquin which is the generic to Plaquenol. A few years back, that stopped working. My neck, my hands and feet hurt so bad that I would wake up in the middle of the night in agony due to the pain of the flare ups and my joints would be so stiff that I could barely walk.
Hi All,
I appreciate your comments, but keep in mind this is not a contest. We all have to deal with RA in response to how the “our own” disease affects us. I sympathize with with all those unfortunate RA’rs who have more severe symptoms than others, but understand that we all have a hard fight ahead. I hope you do feel better soon. Remember, we’re here for you. Kelly’s blog is for us to offer support and insight to how to live better even with RA, this insight is gathered from the only people who have a first hand experience with the disease. Good luck, keep on fighting, keep on loving, & keep on working towards a cure.
-Roger
Low pain threshhold?….To each his/her own….
1987, I’ve stepped on broken glass and got one piece embedded deep in my left heel, its damned painful with every step, I used the small knife on a wine-opener, grit my teeth and dug it out of my foot in 15mins…. pain? of course….
2008, had a bout of Shingles, medical term “Herpes Zoster” for 3 weeks, remnants of chickenpox virus dormant in my body rears its ugly head when my immune system was down, it attacks and damages nerves in my body causing painful boils…. pain? it’s like having strong electric current running through your nervous system suddenly and constantly….
Had RA symptoms more frequent since July 2012…. pain? all of us here knows how…. Just doing something as simple as getting out of bed is a huge task and when achieved, a great sense of accomplishment….
Recently, having extreme lower abdominal pain that doubles me over with the pain felt mostly near my groin and in my lower back, doctor ordered some scope to confirm her suspicions of cancerous growth…. We’ll see….
I have a message to the Joker upstairs…. Bring it on, I will fight you to the end!!
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I am so relieved to hear other people’s accounts of what I can only describe as absolutely crucifying pain. I am not a complainer by nature.
I work a 13 hour night shift taking care patients on life support with life threatening illnesses or traumas. I love my job, and it defines who I am. This is all I know how to do. In 2001,I finished one of these shifts with a ruptured appendix. I was vomiting, nauseated, hurting…but I finished. I checked myself into the ER straight after and was in the OR within a couple of hours, so I consider myself pretty tough. I took no post op pain medication. Didn’t need it…the pain was so bad beforehand that the surgery was a piece of cake.
Before that, I had my first child in 1991, a 24 hour labor that sent me to the OR with bleeding post delivery. I took almost no pain medication. I took none post delivery.
I took nothing after my C-section in 1999. It really wasn’t that bad.
When I developed RA in 2013, it was without a doubt the worst pain I have ever experienced. No doubt. I remember coming home from my 13 hour shift and taking 2 Percocet, an Ambien, 800mg of Ibuprofen and just bawling because my knees hurt so badly that I could not stand it. Worse than any sprained ankle, worse than the time I broke my foot running (I went to work that night as well with nothing but Ibuprofen), worse than labor pains. I wanted to die. I begged for death, but it did not come. It felt like someone was driving nails in my legs. I later found out that my tendons were so inflamed they were close to rupture, which made me feel like less of a whiner.
I never would have guessed that RA was this painful. There is nothing, other than Prednisone, which even touches it. Narcotics do not work. Ibuprofen does not work. Ice and heat do not work. Sleeping pills do not work. It’s like your worst sprained ankle everywhere, all at once…times 10. Except with fever, flu-like symptoms and massive fatigue…except that you cannot sleep because the pain will not allow you to sleep. You bend or extend the affected joints without horrific pain. I thought my knees (which were the worst) were going to explode. Horrible. Absolutely horrible. I would not wish this on anyone.
Thank you, thank you, thank you! I’m new to this blog and have been reading through some of the posts. This post I found particularly interesting. I have endured shingles 3 times, a slipped disc with shingles in my neck and I think I not only know what pain is but also but also tolerate pain fairly well. The issue I find with my RA pain is that the tiredness and lack of energy exacerbates the RA pain and the body just begins to revolt. I am still searching for the right treatment that I can afford (very limited insurance due to other health issues). I cannot tolerate any of the oral meds and can’t afford the biologics so I’m kind of stuck between a rock and a hard spot.
No seems to really understand what I am going through and so finding this blog is a sort of lifesaver at this point. I have learned so much from reading here the last couple of days. Thank you, thank you, thank you!
I hurt really bad allllllll the time. Flare up days are evan worse I just hurt hurt hurt. Please make it stop !
I have a few friends along for the ride, so I cannot tell you which pain I’m dealing with at any one time. Because, as we know, these sutoimmune diseases like to run in packs.
So.
But I will say: I am in chronic pain daily. Sometimes it spikes higher. Some days I cannot move due to the pain. Some days I lie crying on the couch. Some days I put it in the background, though I never ignore it. It is impossible to ignore.
I give not one fig for your “pain scales” or “dramatization” or “low pain thresholds.” Physicians, fix the problem. I don’t care how much you think I am in pain relative to how much pain I am. (Except you choose not to take me seriously. I will get some vice clamps and help you out with that determination. Just a minute.)
When I am perfectly still, it hurts. When I move, it hurts. When I BREATHE it hurts. (Costochronditis, anyone?)
No one should be in pain. Period. Not, no one should be in a little pr a lot of pain. No one should be in pain. It should be FIXABLE. Let us, dear physicians, focus less on whether or not we’re over reacting and more on FIXING IT.
Or so help me, I will find the vice clamps. I know how many joints I have in my body because mine chime in on a regular basis. Do you?
Yes, it is an angry response. I am angry. My daughters daily ask me when I will get better. My mate watches with tear filled eyes unable to help as I writhe in agony. None of these folks ask, hey, maybe it doesn’t hurt as much as you think it does.
End of story. They just know I hurt. I know I am on my last FDA approved drug and it is FAILING.
Physicians, heal yourself of this idiocy, and get on with the HEALING of the diseases, please.
Jennifer
your post makes me think of an Old Testament verse – maybe there is a time to be angry or just fed up with so much nonsense while people are suffering.
There is a time for everything,
and a season for every activity under the heavens:
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain from embracing,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace.
My doctor at the pain clinic told me that from what he understood, “the pain from rheumatoid arthritis wasn’t that bad”.
I wanted to punch him right then and there.
Doctors don’t have a clue. Unless you deal with RA yourself, you have no clue. And because we all hide it and have to push on and deal with the pain because it WON’T be going away, everyone assumes it isn’t that painful.
The word “frustrating” doesn’t even come close to describing what it’s like to deal with people.
I wonder where he read that. The only place I’ve read that (RA pain is not very bad) is on an official lupus website.
I agree with you Lisa, some may get that impression because we are so stoic about pain – how else could we cope with it day after day? as 1000’s of patient comments have shown https://www.rawarrior.com/tag/pain_tolerance/
Yep!!!
Do I have a lower pain threshold b/c of 60+ years of RA?
Well, let’s see. This disease process has eroded my joints to past the knuckle area in, not one, not two or five or even ten…it is on going number of joints. I have tried all the newest and have been on all the oldest drugs trying to get a handle of this vicious disease. I even volunteered in 2years to trials at NIH.
I see on TV that Brian Williams, TV personality, is in “agony because of bone on bone destruction of his knee from a injury 30 years ago”. Is his pain touted as overreactive? Oh, heck no. And I do believe it hurts him, of course,, because I have bone on bone destruction as well.
I am so grateful to have a Rheumatologist that validates my pain.
Who are these Rheumatologists to suggest otherwise?
I pity their patients and I am sad that this is the kind of doctors that are allowed to visit our world of RA.
To bad they don’t have virtual pain training in medical school. If some of them actually knew from experience whit it feels like to have RA they might be more sensitive towards their patients.
-Roger
Sigh.. low pain threshold? Ha! I’d rather give birth to another 11 pound, 14 ounce, naturally.. Less painful then RA! 🙂
touche Norma. As a mom of 5 (all long, but “natural” labors) I agree.
Last night, despite being the happiest I’ve been in months, the pain was impossible. After seven years of coping I have proven to doctors and those who know me that I have a high pain threshold and last night it got the best of me. Thank you for this for this subject today….I needed to vent and you did it much better.
I hope your pain is getting better today.
only hurts when I’m alive doc
whoops, forgot the :D, smile, laugh, love
So thankful that my rheumy doesn’t feel this way or the other docs I’ve seen.!!! I was in a serious car accident several years ago and snapped my collar bone two. ( was so stiff from the jolt and in shock, so I didn’t realize it was broken, I’ve never broken anything before) when the ER doc. Examined me and asked what the pain level was for my collarbone was on a 1-10 scale, I said 2. He looked real surprised then looked down at my chart and said “ohhh, you’ve got RA, no wonder this doesn’t hurt that bad to you!, your collar bone is broken” lol. All I can say to this study is that it sounds like they are so “book smart that they don’t ave any common sense” as my granny used to say. I’d like some of the docs to live in my body fr a while!
The fact that any of us is afflicted with this disease is catastrophic in and of itself. I’ve been in chronic pain for 50 years. I have no need to embellish, my deformed, crippled hands and pronounced limp speak volumes.
Each time a physician asks me “Does this hurt?”
I ask in return: “Compared to what?”
I know this is a very old topic but I just found it and spent a lot of time reading everyone’s comments. So I wanted to add mine I Hurt everyday all day all night. But the worse pain is when I go into my yard and cut grass and pull weeds and water flowers. Big mistake. .. that 45 min. Will take me 24 hours for the pain to go down to a tolorrible leval evan with extra pain killers. So yes the pain is real and it is hurting that bad.
This is so ridiculous…I laugh at the people who complain, because if I shared the pain I feel from supposed RA, definitive lupus and definitive OA they wouldnt believe me…oh, wait according to what the “docs” say I have no pain…am I reading this right? 🙁
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I’ve been told I have a high tolerance for pain. I have RA, Degenerative Disk, Osteoarthritis, Bursitis, Gout and Diabetes. I have constant 24/7 pain, even with treatment from Pain Management, I’m still battling pain, although the treatments (shots in the neck & back so far) has taken some of the edge off, it’s still there.
I’ve had carpal tunnel surgery in 1995 (before the arthroscopic style surgery), abdominal surgery, total knee replacement, broken and dislocated ankle and 2 surgeries on it. I’ve endured some pain with all of these, but this pain is worse. I think one of the things that makes it worse is there is no end in sight. At least you know the broken bone will heal…the pain from the surgery will subside eventually as it heals. This, it never stops. You wake up in pain, you try to exercise in pain, you try to do normal routine stuff in pain, you talk on the phone in pain, you walk, sit or stand in pain. You lay down in pain and usually wake up multiple times every night in pain and hard to go back to sleep, even with pain meds.
The ONLY things that get me through the day….my Lord, as I’m a born again Christian, and my loving hubby of 31+ years who is a jewel sent from heaven!!
I want to work, I want to hold a job….I get bored here at home, but I can’t function as a secretary anymore…can hardly walk, sit or stand for more than a few minutes at a time. My typing speed and accuracy are quite slow compared to the 72wpm with 1 error I used to be able to type. I’m foggy and can’t think, have severe headaches that put me down with ice packs, meds and dark room 2-4 times every week. I try not to complain, because I know hearing someone complaining all the time gets old, but some days it’s hard not to!
It is depressing to think that this is going to be your life for the rest of your life. But I have my husband and friends who love and support me. You’ve got to have someone to support you and encourage you!
First let me say that reading the comments has helped me tremendously. I’ve been off my RA meds for over two months due to other medical issues, and I had a doctor ask me why I didn’t just take Tylenol. I had a psychotic reaction to Tramadol, and I am allergic to most pain meds (taking hydrocodone right now). The point has been established that none of us are wimps (or we wouldn’t have gotten this far!) Still HOW DO WE GET DOCTORS TO REALIZE THAT THIS DISEASE REALLY HURTS?
The notion of threshold of pain is ridiculous until technology is developed to measure human pain.
I know this. I am not a crybaby or hypochondriac and I am not disabled yet, but I see how it could happen.
I have worked my whole life with pain. First flare happened after a car accident when I was 22. Flares have happened off and on since then. I am now 47 and in the worst flare of my life. Sought medical treatment once at age 31 and the doc, my pcp at the time told me we might find I have fibromyalgia. I researched it and based on negative connotations decided that wasn’t anything I want to comp to.
I have dealt with it. Until I had a flare a couple of years ago that in involved skin first and then joint pain and swelling. I have been dealing with symptoms since, including a skin biopsy on my rash. Flares came and went and when I had time in the midst of a flare, I took it to my pcp.
She could see and feel my joints and my blood pressure went up when it has always been low. I am a fit woman 5’5 130 lbs with a good diet and exercise. She did every test on the books a week ago because there was obviously an issue. Got a voicemail on Friday from her nurse that my RA levels are very high, everything else looks good. They are scheduling a rheumatologist appt for me on Monday or Tuesday. No waiting. No other details.
I am not a hypochondriac, I do not bitch about pain unless its severe, I am not on pain meds. And am not seeking them. I am sick, swollen and tired beyond tired. And I still work. And raise kids. And have a house.
I’ve turned to family and friends for support during this last flare and have met with interesting results. While I was waiting for lab results and hoping for emotional support. Lets say I know who my friends are. Yes, I look pretty good for a 47 year old woman. Yes, I am a self employed expert in my field.
But, it must be my diet (which is good) – its obviously not my weight. It’s my age – we are all sore and tired. Or it’s my hormones – I must be menopausal by now. But I’m not. My periods are regular and my doc tested all that. My menopause could be in 6 months or 10 years. Yep.
My good friends and family are trying to I understand.
I would gladly give each author my pain to try and test for it.
I would like all of them to walk around on my feet for 12 hrs. and then tell me it doesn’t pain them.
There is a test for inflammation but not for “PAIN.”
These folks are stupid for saying such things, especially when they don’t have the disease of RA.
Poor ignorant people.
Pain and the measurement of the same is completely subjective. As with experiencing the process of grief, everyone has their own way of experiencing it… there are no right or wrong experiences (unless of course they become unhealthy).
I was handed my RA diagnosis 18 months ago, after years of a variety of symptoms, most of which I just “pushed through”, having what I would consider a high threshold to pain.
It is the cruelest pain I have ever experienced in my life!!!! I worked as a registered Nurse, and I said to my GP, when I described the pain, “I only hope and pray that if I have ever nursed anyone with RA, that I was as kind as I could possibly be and I handled them with the lightness of an angels wing.
Keep well All =)
Jude, you are so right. And no one who doesn’t have it can imagine (fortunately for them).
I know I’m just repeating what most have said but I am shocked (and very angry) about the claim that people with RA have a low pain threshold. I am 56 and have been through a lot (as have most others who commented)-my 20’s and 30’s were all about dealing with endometreosis/ovarian cysts/fibroid tumors and countless procedures to deal with that along with 14 IVF attempts, then breast and ovarian cancers in my 40’s (mastectomy/radiation/chemo) and I ended that decade with a complete hysterectomy and while I certainly wasn’t pain-free, it really wasn’t as bad as I expected. I hate RX pain meds and would just pop advil. I was diagnosed with RA 5 years ago after a positive RA factor and elevated CR protein and ESR readings but was in minimal pain and just used etodolac until that did a number on my stomach. And the readings started to shoot up 6 months ago and my rheumatologist (a kind man) retired. I really began to experience pain in December of 2013 and went to the rheumatologist in the same practice as my PCP when I had my first “flare” in January. I remember the increasing pain and it was like nothing I had ever experienced. I remember standing in the kitchen and my husband leaving to run an errand and the pain came on so quickly that I literally just stood there trying to process how painful and how quickly it came. My husband came back after 30 minutes and I was still standing in the same place and he asked me what was wrong and for the first time in my life (and in our marriage of 32 years), I just turned to him and started crying. Of course, he’s seen me cry before but never from physical pain. OK, enough of my story. What WOULD have been helpful would have been if my new rheumatologist, who kind of casually handing me prescriptions for Methotrexete (still new so probably spelled wrong) and folic acid after this flare and never acknowledging the pain and never telling me about any side effects. Maybe I would have been better prepared? I don’t know but the warnings and honesty with all my previous doctors with my prior diseases and treatments was so vastly different. Astonishing that a doctor would/could not simply say something like, “I realize it’s painful. Perhaps we can talk about ays to relieve your pain.” Is that so hard? Then I would have been prepared and not think I’m also losing my mind. So I’ve done the “research” and will start acupuncture tomorrow. Any other tips would be appreciated for the new member of the group! Thanks!
It infuriates me when people try to evaluate my pain or anyone else’s (when dealing with chronic pain) on a “normal” pain scale.
At The Chronically Awesome Foundation (www.chronicallyawesome.org) we published a version of the Mankoski Pain Scale for our Friends and Members. It is a subjective pain scale. Check it out here: http://www.scribd.com/doc/164498351 you may find it helpful.
As far as catastrophizing is concerned, it is the idea that something is worse than it is, not the fear that it will get worse. For someone to say “I hope this doesn’t get worse”, or “This can’t last much longer it’s making me miserable”, is not by definition Catastrophizing. When the pain flare is over, were the patient to say “that nearly killed me, I was really almost dead from the pain”, or if they went online and wailed about every flare disregarding others needs because they are, of course in more pain than anyone else, I’d call THAT catastrophizing. Worrying, quite realistically that a flare might be long or that another come quickly on the heels if the last is legitimate fear.
I’m not sure who doctors are talking to when they come up with this. Bless you for having the patience to read the footnotes and footnotes of footnotes. That is laborious and would probably cause me to flare!
While I do not have RA, our belief is that chronically ill(including chronic pain) patients from the physically to the mentally ill live daily with the same challenges. Chronic illness is miserable and we all have days we can’t get out of bed or can’t think about getting dressed or preparing a meal. We don’t compare pain. Does RA hurt more or less than my Lupus? My neuropathy? My fibro? My EDS? I don’t know and it doesn’t matter. Doctors should be treating us all as individuals whose pain is SUBJECTIVE. We have our own experiences and our own bodies. Most of us also have comorbidities that play a role in our pain or how we feel pain.
I hope the pain scale helps.
Thanks for listening to me get a little angry for my friends in the RA community.
Julianna “Jules” Shapiro
Founder And Executive Director
The Chronically Awesome Foundation
http://www.chronicallyawesome.org
Anyone that says that RA people have a low pain tolerance should look at my family.
My sister was Olympic class gymnast that trained on the team with Mary Lou Retton back in ’88. She consistently (as did all the girls) practice and compete with sprains, hairline fractures and breaks. This with nothing more than Motrin. Now on high doses of opiates, she can barely get out of bed.
I played sports year-round including football, soccer, and boxing. I broke 19 bones in my career, punctured a lung, without a complaint. I then enjoyed a 20 year career in the Armed Forces. I developed RA in my last month of active duty. I now bring my (I love me book my parents made) whenever I see a new doctor to get rid of that kind of thinking. My RA is a constant flare with no helpful drugs so far except steroids. My concerns are how much longer I can manage this much pain. Just lying in warm water is more painful than any other time in my life.
thank you for sharing this Randy. We’ve heard stories like this many times – somehow I just hope that with literally thousands of them on the site, the powers that be would have to reconsider the way they label us.
Kelly l can’t thank you enough for what you’ve done here! I am still looking for a RA diagnosis-NOT that I want it! But I’m pretty sure I have it! My pain management Dr diagnosed me with Fibro- without even examineing me- or even listening to me! He knew it was Fibro because ‘Arthiritis doesn’t hurt that much!’
So I am on pain meds & muscle relaxants-at least he gave me that! ?…but I am scared to let it go because of the damage it does when untreated! ?..so I’m still trying to get diagnosed.
I have had back pain & other aches over the years- just thought my years as a waitress & mom were just catching up with me.
I didn’t ‘exercise’- but as a full time mom & waitress I didn’t
need to! I was active all the time!
Then I woke up one morning & just getting out of bed was so painful I couldn’t believe it! I shuffled to the couch and didn’t dare move for a couple hours- I didn’t even want to breath everything hurt so much from the bottom of my feet to my neck! The pain was unreal-I didn’t know a body could have that much pain!…then it got better, still achy but bearable, I started thinking it couldn’t be that bad- I must have been imagining it! Then about suppertime it was back! Not as bad, but back! Next morning, same thing!…but then I felt physically sick from the pain & called the Dr. In the 2 weeks waiting for my appointment I started looking and it all pointed to RA.
I have never felt such pain-didnt know it was possible! And I have had many kids with no epidural, I could handle that because knowing it would be over soon, & I would have a beautiful baby made it bearable! This pain is Not! Every joint hurts from aches to stabbing, throbbing & numbness…and it is never ending! A little relief for a while, then it’s back…with no prize at the end to make it worth it!
I hate to have my husband and kids see me like this, and am lucky that they understand and try to help me…even tho they don’t understand how it really is! I thank God for them everyday!One day I’m active and the next,the pain is the one in
control-for now! ( I can see myself on the floor in a grocery store too Kelly-& it scares me!)
So sad to see so many here with this, but so thankful that you have done this Kelly! It is such a help to read this & know I’m not the only one, and No! I am not imagining PAIN like this!
Hoping you all have less pain…someday! And loved ones to support you!
What do I think, I think it’s insulting. I don’t exactly what point you are trying to make but your coming off almost like you think most if the pain perhaps is Psychological or that more people who are diagnosed with arthritis had a low pain tolerance to begin with there for make it out to be far worse than it is. Hope whoever wrote this article or came up with this theory at least feels similar pain to arthritis for a few days then perhaps you’d reconsider what you said!
The New York Times recently published an article about pain I can support, and comes the closest to my feelings on the subject: http://mobile.nytimes.com/2014/07/13/opinion/sunday/how-to-talk-about-pain.html?referrer
Hi; I just read the article about RA sufferers having a “low tolerance” to pain and had to laugh out loud. (I myself have had RA for about 10 years now). I had two children without benefit of drugs and my oral surgeon has stated on a few occasions that I was a wonderful patient who tolerated dental pain very well. Maybe the scientists who did this study forgot to ask people like me! Love your column.
I say Bullsh–. I have in fact been told by my pain doc who is a physiatrist by specialty that I am amazing when it comes to pain tolerance. I had three babies natural childbirth, the first one induced and it took three days, back before they even did cervix softeners to help. And all born face up. My uterus is evidently so tipped that a few years ago my OB/GYN asked me when I’d had a hysterectomy and I haven’t! My pain doctor who did an epidural injection for me for a pinched nerve the first time we met, said, looking at my MRI, I “should be wheeling in here, not walking”. According to him, people who have had chronic pain for a very long time don’t measure it the way someone unaccustomed to pain does. They tolerate more.
I am appalled at this entire story. It totally does not make sense. I went online to prove to my boyfriend that I’m in is as much pain as i’m claiming and he found this article to make matters worse and so that he can tell me I’m a wussy and a liar. I also have had five children some of them without epidural I’ve passed a kidney stone I’ve also had complete knee replacement surgery I don’t think they have a low pain threshold because I handled all of these other situation beautifully the rheumatoid arthritis is what gets me every time . I feel so weak that I literally feel as though someone is driving a stake through both of my wrists my elbows and my collarbones it makes it impossible to dress do dishes want to take a shower sometimes even get out of bed because I’m up every hour on the hour all night Long because I’m in so much pain. I don’t care what this article says I don’t less a doctor also has rheumatoid arthritis I really don’t want to hear a thing they have to say, I have had RA since I was 24 years old I am now 42 and I literally feel like I’m on deaths door and it’s nice to know that others with RA feel exactly as I do and that I’m not A wussy!!
No you are not a “wussy.” Sometimes, I argue in my mind which is worse – the horrific pain/sudden disability or the shameful way many people act in response to something they don’t understand.
This makes me laugh. Fortunately, my family MD takes my pain seriously. Low pain tolerance. Sigh. I worked through a ruptured ovarian cyst. After several steroid in injections in my left shoulder, ortho took MRI. had arthritis wrapped around rotator cuff with a piece of cartilage torn floating around. He said, “You don’t complain very much”. Lol. When I say i’m in pain, i’m in pain. I don’t have the energy to jump on the exam table and scream it out.
I read this and thought these “tests” were wrong! I have always had a high threshold for pain,compared to others I know and I have RA. I barely talk about my pain to others,mostly cause who wants to hear that depressing stuff. I think too many times they try to find answers(which makes me happy!),but in ways that are not helpful. Don’t tell me I have a lower pain tolerance or its just my imagination,find the reason behind the condition. Why do we have this condition? How do they know it can be hereditary?
I believe that chronic pain can alter one’s outlook,eventually it can become suffering. I am lucky that my pain is minimal most of the time. I think that this study seems biased and I believe there is gender bias because the majority of RA pt’s are women.I recommend the book YOU ARE NOT YOUR PAIN. I believe that their is a cultural SHAMING that goes with pain. Medicine is in the dark ages on this issue, it cries out for integrated and creative solutions. IT also cries out for more research and compassion.
I googled “my RA pain is overwhelming” hoping to find some tips on dealing with this pain.
This ridiculous study is what I find! What a slap in the face, in that it’s just rude! It’s almost funny!
I hate it that you all have this pain too and I hear that I’m not alone. Maybe it’s enough for today to distract me from my pain.
I get so tired of putting up with it! It’s getting in my way! It’s taking the fun out of my life! I’m sick of it and I want it to stop!! I have five and soon to be six grand children I want to play with, hold, carry and enjoy! What do we do?
I don’t want to live like this, I don’t want to be used to this pain and I know it’s going to get worse. I’m so tired all the time as well. I feel like I’m good for nothing any more. I’m depressed and I feel like my husband is tired of it too. He treats me so well and helps me but I know our relationship is not the same anymore.
Please find a cure and find it fast!!
I don’t really give a hoot what those idiots say, they are foolish and yes are wasting our money. I hope they get RA!
Sums me up completely
Oh how I wish those researchers could experience our pain for 3 weeks, 24/7…
I have a similar experience. I needed gall bladder surgery and walked around with level 8 pain. I had autoimmune hepatitis for more than a month. I feel like I’m almost a superhero.
First of all, if these patients were currently in pain from RA and then they administered additional low painful stimuli how can they objectively say that they have a low pain threshold? In other words, if they are already in their “typical pain” and you add to that… that’s not a low amount. Your forgetting about the pain they are in aside of that stimuli. I’ve had RA since I was 12. I have broken fingers, my nose, kidney stones, etc. I didn’t even cry (not saying u have to cry to be in pain but it wasn’t that bad) and I don’t take narcotics that would potentially mask that pain. You can ever effectively measure pain thresholds as every person differs in tolerance, environment, RA severity, mental health, other medical issues, etc.
I have to say, this idea that RA patients have a low threshold for pain is utter non-sense. I have had five children, all natural births, no pain medication, not even an ibuprofen. There ARE days during a flare up that I would rather be giving birth. Not because birth hurts less, but because it has a defined time frame when I know it will be over. The extended period of moderate to severe pain without repreve is the problem. It is like water torture. I can tolerate water drops hitting my forehead for a short time, but even something as painless as that can drive a person nuts when it’s done over an extended period of time. Goodness, I would think this to be common sense but apparently it is not.
I am not a doctor- far from it, but my hypothesis is that when tissue swells during the inflammation, the nerve endings also become larger. Take two pencils…poke your hand and you will feel two distinctive pokes because we have more nerve endings, by design, in our hands. Now do the same thing on your thigh. You likely won’t be able to tell that it’s two distictive pokes, it will feel like one object. Is it possible that our nerve endings shift, or become inflamed during a flare out? I would like to know more.
Does it matter? Bad enough that R.A. Is a painful destructive disease, that the sufferers supposedly have to also contend with heightened perception of that pain makes it all the more intolerable and worthy of sympathy and understanding, you would think! It’s as real and sore as it feels to the sufferer and should be treated as such. Being told it’s in your head doesn’t make it any less painful and any Dr. adopting an ‘Ih it’s not that bad’ attitude should find another profession.
RA pain is extreme. At all times. WE with RA adapt, but pain is so extreme for days at a time. Unless you have RA, the depth of pain is not appreciated. Not by Rheumatologists, Not by Ortho docs, not by family members. So,if we with RA say the pain is too much on a certain day, we mean it. We function on such a level of constant pain, that when pain has a jump in intensity,it becomes mis understood by our Docs and those who love us. We walk with ankles that could feel broken, we hold our children with hands that may hurt. and we keep going. So, if we say the pain is getting too much? Its too much. Docs, Stop undtreating RA with minimal pain meds. Opioid regulations should not even apply to RA conditions.
Hard core narcs should be for people who have surgery, body sudden trauma, soldiers, etc ..
and, People with RA. Period.
Ps..I have a great life. Knees and hips replaced at 18 and 21…Three kids way after that onset. Life long RA, and I am tired of the under treatment in pain for people with RA.
More to come.
J.Penn
whoever wrote this article needs to live a life for 1 week with RA they will change this article.. Yes it hurts. ……………