Do Rheumatoid Arthritis Patients Have a Low Pain Threshold?
This blog is my sassy response to a more serious look at RA pain threshold studies.
- If they call me a drama queen for saying it hurts, then I get to have a crown.
Personal responses to the Rheumatoid Arthritis pain threshold question
Today’s blog is my response to yesterday’s shocking post about the study of Rheumatoid Arthritis pain thresholds. You will need to read that post on RA pain to understand this one. I’m finding it extremely difficult to comment on this without sounding like the drama queen that they accuse us of being. However, this is no time to mince words or fear reprisal; so here is my response:
1) My RA Onset Story gives a brief description of the night my onset of full-blown RA began. That night, both shoulders began to hurt like I had been shot or stabbed. The pain was excruciating and immobilizing. Where were my years of “maladapting” over RA to account for my construing this pain to be so extreme?
2) I was not born the day I was diagnosed with Rheumatoid Arthritis. What of the 40 years of my life lived before the diagnosis? I can objectively compare RA pain and other kinds of pain. Having lived both with RA pain and without it, I make a better judge of “actual” RA pain than the researchers do. And I say they are misguided.
3) My confession: During that first year, I made statements which could be classified as “catastrophizing.” I said things such as, “I can’t take care of my baby. What will happen to us?” and “I’m worried I will never be able to dress myself again.” My assertion: I spoke the truth, a sign of mental health, not mental illness or maladaptive behavior. My Bible tells me so – and my psychology degree confirms it.
4) Why do they think that because they have a machine to precisely measure pressure applied to the skin (an algometer, for Pete’s sake?), that what they are doing is logically sound? Yes, my arm hurts much more to be touched than does someone who does not have RA. But, how is that necessarily a “lower threshold” of pain and not “more pain”? My arm did not hurt like this before RA.
5) There may be a few people with RA who actually are hysterical too. So what? There are bad cops, rude drivers, corrupt politicians, and uncaring doctors. Such generalizing has no place in science. I did notice the number of victims participants in most of the Rheumatoid Arthritis pain studies is small. Studies often have 12 or 25 people. Larger ones have 40 or 100. They do not want to compare numbers with me on that.
6) Childbirth. Without even Tylenol or wine, I gave birth to all of my five children at home. The first labor was 29 hours long. It was a difficult birth. I will avoid graphic details for the sake of the men in the room. However, the point is that I do have something to compare with RA pain in determining my pain threshold.
More than one midwife marveled at my high pain threshold and ability to labor gracefully. Once, I stunned the midwife. She said I was the only one who’d ever fooled her since she did not realize it was “time” because I was silent and still through the worst of it.
One of my doctors recently confided in me that she scheduled her epidural and caesarean the day she realized she was pregnant. She was stupefied that I endured childbirth five times.
7) Perhaps this seems extraneous, but I’m a teacher. I did see grammar or spelling errors as I read the articles about RA pain thresholds. Am I to think that the rest of their work is flawless? I did not need more reason to doubt their conclusions, but here it is.
8) Although I have not met an RA patient with a low pain threshold, I do know some people have them. Someone I know had a stubbed toe and insisted that others keep a two foot radius at all times. When this person had a minor stomach flu, she/he screamed on the floor for several hours, “Call 911. I need an ambulance.” I know low pain threshold when I see it.
9) What about evidence which often accompanies Rheumatoid Arthritis pain? One study noted: “Intrapatient joint temperature, circumference, and pain threshold were significantly correlated in RA.” They admitted that when patients claimed it hurt more, joints were also larger and warmer. While Rheumatoid Arthritis is invisible most of the time, there is physical evidence, such as erosions, which signify pain.
10) Why would RA pain ruin my judgment when other chronic pain did not? I have lived with other diagnoses for many years, including degenerated discs, bone spurs, and a slipped bulging disc. What is special about RA pain that they believe it makes us become “maladaptive”?
Is the truth about Rheumatoid Arthritis pain just too hard?
Pain has always been considered a warning signal. It’s a protective tactic of the body to warn of damage. Why can’t science believe this about RA pain and be satisfied?
Because it is just too hard. RA pain is invisible. My good GP looks at my hands the other day. They don’t look swollen to him that morning. He says, “But you can make a fist okay, right?”
“No.”
My memo to the Rheumatoid Arthritis pain researchers
Don’t we need to get on with the war on RA? Why are we doing studies to ask whether RA pain is less than it is perceived to be? Why doesn’t every resource go toward curing RA or extending our lives? Where are the sixty-six footnotes about decreasing the mortality rate?
Recommended reading:
- What does the research say: Does Rheumatoid Arthritis Pain Really Hurt That Much?
- Murphy’s law meets Pollyanna: Old and New Adages for Rheumatoid Arthritis
- Your list of the ways that Rheumatoid Arthritis Disability Makes Things Difficult
- Be sure to read your doctor’s notes about you! Medical Records Tip
what can you do to help yourself get through sn episode of extreme pain and shortness of air. Keeping in mind I don’t have DR followed noted as these but would like these patients to be most self supporting of themselves. I also dont have O2 tanks or medication to induce relaxation. Is it possible to live without all the extra DME equipment. One less thing to make you feel strapped dowm.
I can only speak for myself and what I’ve experienced. I was diagnosed with RA 12 years ago when I was 31. Let’s see what you think about my pain tolerance, I’ll share a few examples:
1. Gave birth to my son without an epidural or pain medications.
2. I tore my ACL at work in August 2001. Because I worked in construction, this was the busy season and I wanted to continue to work. My knee would go out on me at least twice a week. I had to pop it back in to place (it hurt pretty bad until I popped it back in). This continued until January 2002 when construction slowed down and my knee was going out daily.
3. I had my ACL replacement surgery in January 2002. The Dr. prescribed vicodin; I didn’t feel the need to take any of them for pain.
4. When I was initially diagnosed with RA, my rheumatologist was shocked at the swelling and the beginning of the way my fingers were deforming. She told me to never let it go this far. That was in 2000.
I hate to be asked to rate my pain. I don’t know if I am the norm or not, but if I sit around and think about my pain, I’m going to hurt for sure. I try not to think about the pain on a day to day basis. I told my rheumatologist that if I am calling her and it’s not time for my appointment, that I am ready to walk in front of a bus to end the pain. So, what would you measure that?
I was recently admitted to the hospital with so much pain in my arms and chest that I (and the Dr.’s) thought I was having a heart attach. I was told “it is just your Fobromyalgia getting worse! I was diagnosed with Fibromyalgia several years ago but the pain has gotten progressively worse, to the point that I cannot move at times; have given up several jobs and now work part time to just try to pay the bills. I am a nurse, love my job, and would love to have the energy I once had! I have my first appointment with a Rheumatologist in a couple of weeks. I do not want to be told I have RA but want to know if I have it (you know?). If I can get something that will help then great. I have been told by Dr.s that they won’t see me any longer because I refuse to take the pain meds they offer (I cannot function on those). Don’t tell me I have a low pain threshold; I live with total all over pain every day, with fevers malaise etc, and keep going, then go to bed and cry. I am so glad to find this page; knowing what I feel is understood by some; and I hate that anyone else has to feel it. I think all of us should recieve a gold medal!!
I agree with another writer who posts that dealing with RA has increased my pain threshold! I also gave birth to my five children without even a thought of medication, I had severe menstrual migraines for years when my children were young and took only Tylenol, I’ve had office surgeries with only local anesthesia! I know my pain threshold has always been high! Now I lay still for IV pokes, steroid injections into joints and other painful procedures without a flinch! I am a nurse-midwife helping women give birth despite any pain that I am feeling! I am no wimp!
RA pain is hard, it’s real, it stinks, it makes you need help with simple tasks like pulling those foil seals off milk containers! Sometimes when I read studies I wonder, “who on earth are these people and who are they studying?” Not real people like me, I’m afraid!
As Kelly said, when we talk about feeling helpless or overwhelmed, it’s simply stating a truth! It is overwhelming to try to tackle seemingly simple daily activities when you can barely move. I do feel helpless when I can’t do things that are easy to others! It’s not maladaptive! On the contrary, I believe it’s super-adaptive! I believe we find ways to accomplish so much with so little strength, to continue to function instead of giving up, to love others when you just want to hide and sleep! Most of us are indeed overcomes! I will take the crown for drama queen too!
RE: Edwards 2006 article on catastrophizing included in Kelly’s post
I think it would be fascinating to study the characteristics of researchers who study pain. I would imagine there are interesting, common factors among that population as well. Wouldn’t it be interesting to uncover similar labels to what is being assigned to us- turning their ruminations about our pain into a pathological, maladaptive response. It takes hours to review research and prepare these journal articles -oooh, rather obsessive don’t you think? How would that sit?
I feel the same level of exasperation as others here. The “construct” of catastrophizing the authors suggest is simply irrelevant and cannot be proven: pessimistic about pain related outcomes? magnification? LOLOL…..
The scale is supposed to identify those who have a maladaptive response to pain? The items seem rather reasonable given what people with rheumatoid disease must face. The language is somewhat inflated, though, and I would feel rather odd about having to answer questions with only inflated descriptive language.
This whole line of “research” leaves me as a person with RA experiencing significant daily pain feeling less than human, disrespected, misunderstood, disbelieved, devalued, and objectified. I don’t see a legitimate reason for this line of research even though there is a vague justification at the beginning of the article about finding factors that can be addressed or medicines to help. The authors suggest cognitive behavioral therapy as THE psychological treatment but what if patients who are diagnosed with RA already have extensive experience using cognitive behavioral therapy strategies daily? Can the same claim be made that they are catastrophozing and magnifying pain?
I started to look down the reference list and was just shocked. What value is there in reporting that there is pain associated with cancers, gastrointestinal illnesses, major surgeries, etc… Um, guess what? Rheumatoid disease hurts !! Surgeries hurt !!! Can we just accept that as a given and get on with a cure? Can researchers stop being obsessed and befuddled by the fact that the pain and associated symptoms of rheumatoid disease are often barely tolerable?
For some reason, no, some can’t. They see a need to prove that it doesn’t “hurt” as bad as we “think” it does. I”m reminded of a similar remark by several clinicians who were diagnosed with RA – they all say something about their frustration with how little they now know the medical profession understands this disease.
Seems that many years ago, some person made an observation that the disease can’t hurt as much as people say and it got into a textbook so it stuck. I’ve heard many patients say they believed their doctors on this point with regard to parents, aunts, etc until decades later they are filled with guilt because they were later diagnosed themselves and learned of their folly.
It is a heterogeneous disease, but for most, it does cause a lot of pain – that can be severe since patients liken it to broken bones & labor contractions.
In response to Sally’s creative suggestion, they would never submit to surveys, but I agree it would be good to know their experience with pain tolerance, they level of dismissive attitude, whether their patients view them as knowledgeable (for clinicians), etc. While that would “never” happen, what can happen is putting patients in positions of influence on committees and research teams to mitigate such nonsense. It’s a long road but that’s one approach I’m taking that could have long-term impact. I doubt there are RA patients on this team that has produced this garbage and we can be fairly certain that if there were, the results would be different.
Kelly,
I was a special education teacher for 35 years. One of the ways we educated the general education teachers about the needs of our special students was to have an Awareness Workshop. We had a panel of students and their parents discuss the students’ backgrounds and what they wanted the general education teachers to know about their needs. The workshops were always received very well.
Can we propose a patient panel for the ACR Conference(s) ? We need to sit on committees – hopefully virtually – AND we also need to be proposing sessions as presenters at conferences sessions !!! Perhaps those rheumatologists such as Dr. Davis or Dr. Curtis would support and moderate such a presentation?
RPF has proposed a session for next year, but we do not know if it will be accepted. And yes, these doctors and others are helping in that way. It is a long uphill road but we’ve at least started out journey!
I think we may be able to implement the workshop idea though even outside of ACR perhaps.
Kelly, I printed out a copy of this blog entry and what instigated it….your response was SO on target!! All patients should keep a copy of your response to give to any doctors who use those “compassionate” ( I’m using sarcasm here!) words that you mentioned —magnifying, overfocusing, catastrophizing, maladapting etc! I wouldn’t call your response “sassy”….I call it “telling it how it is!” Someone has to do so! That’s why you’re the best patient advocate ever, and that’s why RA/JRA patients love you so much!!
Kelly,
Can one be angry and disheartened at the same time? I have to say that was my reaction after reading the article posted on RA pain studies. My RA became worse in my 50’s. I too had lived long enough and experienced enough pain to quantitatively and qualitatively rank my RA pain off the charts and beyond anything I have ever endured.
I have been told by physicians that I have a high pain tolerance. Fractured fingers and skull, lacerations, soft tissue injuries and more have not even remotely come close to my RA pain.
Now how can we possibly distinguish “catastrophizing” with one’s natural reaction to the physical pain and emotional response that comes with facing a diagnosis of RA. “Catastophizing” may be grief in disguise. We all grieve differently. We deal with this loss of quality of life in varying degrees and in various ways. We grieve the fact that our life may be shorted. We grieve the fact that our own immune system may cripple us. And when your body betrays you and pain becomes your norm- you grieve for the loss of all those pain free days. Days perhaps that were taken for granted and undervalued.
Is my response to the pain maladaptive? I think not. If anything given my history and high pain threshold, I should be inaccurately describing and under-experiencing my RA pain. Most days, my RA is invisible to those around me. My physical appearance in life and how I experience life with RA are for the most part disconnected. Those around me cannot be expected to understand that while I look well, I am dealing with pain that is something that I cannot adequately begin to describe. The battle goes on and so do I.
Thank you for all the valuable information you provide and for giving all of us a voice.
Deb
I too had my kids without benefit of drugs and they were born well before I was diagnosed with RA. I know what “real” pain is. I also know pain is subjective, and in each person should be taken seriously. I also know that RA is not just pain in the joints when it spreads to the lungs (which mine has). A Chest X-Ray is measurable and quantifiable proof this disease exists and no “expert in pain” can argue with it. I find it funny that the same disease that caused my lung problems is the same one that makes it impossible to get out of bed some days and those same “experts in pain” fail to see the correlation.
Thank you Kelly for your response to scientists trying to evaluate the pain of RA. They have no clue to the relentless, percing, sharp pain we have had contiuously for years (+7 years for me).
Pain caused by damage of the disease, I find this serious as do all RA paitients I talk too.
You are right on, I agree, the medical researchers need to stop waisting our (RA patients) time and get too what we need…a cure.
This whole idea inferiates me, it is the same thoughts my closed minded family has given me sense my diagnosis.
I will support you and RA warrior all I can to change this ideas with the medical community.
Pain is subjective. My pain is my pain and your pain is yours. I have worked in physical therapy for about 7 years. Before my diagnosis of RA 2 months ago, I worked with many patients with different painful diseases. I have had patients who deal with pain well and try to work through it and those who used it as an excuse to not even try. I now know that at times it is difficult if not impossible to move due to the pain. Whether a person has RA, OA, lupus, fibromyalgia or any other chronic pain, they hurt. My pain is “actual pain”. I am not making it up and when it hurts it hurts. I try not to dwell on it or complain about it because it will drive me and those around me crazy. Unless a person has RA from birth, they will know pain pre RA and post diagnosis. Thank you for your reply to such ignorant research. RA hurts. Do we really need research on that. Just work to fix it, please. Focus your research on that!
I know I have a very high tolerance to pain. Ive had two bone tumors removed and several broken bones. When I was 21 I fractured my foot and ankle. It was so broken the bones bled into the surrounding tissue. I didnt have medical insurance so I never went to the doctor! Now I have inflammatory arthritis. The doctors are trying to decide if its RA or Ankylosing Spondylitis. I believe I started getting this in my late 20’s. I started to really flare about 5 or 6 years ago. I just got diagnosed in December 4 days before my 41st Birthday. The first Rheumy I saw was a young doctor about my age. I had swollen toes , severe Raynauds Disease, anemia. He did xrays and found arthritis in my feet,ankles,knees,hips, and hands. He then gave me a 45 min lecture on the benefits of a positive attitude! I actually didnt realize for several months he was talking to me!
So more than a year past then my ankle became extremely swollen and so painful I considered going to the Emergency Room. So I went back to my Orthopedic surgeon who had seen me two years ago and wanted me to get tested for RA. He kept shaking his head and said this is arthritis. So he sent me to a very good Rheumy. The good Rheumy and his wonderful RNP’s told me no one at 40 should have this much arthritis! I couldnt believe my ears! They also said the first Rheumy wasnt treating his patients aggressively enough to stop the disease from progressing.
Anyway I think the studies that label people with RA as overdramatizing are extremely flawed. I think they really show a level of disfunction among the Medical community much the same as a disfunctional family. If they dont know how to help a patient then suddenly its the patients fault. Your a hypochondriac, you have fibro and on and on. Its time the disfunction stops in the medical community! God Bless you Kelly for standing up for whats right and others that havent had a voice!
I am so glad that you are out there advocating for us RA sufferer. Thanks you so much for making some of the medical information more understandable to the regular person. I am lucky because my daughter is an RN and when I don’t understand something I can go to her with questions. Keep up the good work Kelly, you really help a lot more people than you probably realize.
Good onya! Keep up the good work advocating for those with RA!
Wow! I’ve been proud of myself because over the last 3 years since I first started with the pain, I’ve felt like my pain tolerance has gotten a lot higher. I’m just like most of you, I live everyday with pain and I’ve gotten really good at ignoring it. Usually without narcotics, but if i need them I take them. The pain in my hands and wrists have made it so I can’t do the things I used to love doing. My hands get so red and swollen that I can no longer wear my wedding rings or now my watch on most days, and consider it a great day when I can.
I certainly did not ask for this disease and I am doing everything in my power to live with it gracefully. My rheumatologist did think his evaluation of my pain was more accurate than mine, which made me mad, so he drew blood for the Vectra DA test and the rheumatoid activity results matched what I was telling him. He apologized and does not question me anymore. I still love him.
I’m not going to spend the rest of my life trying to convince people of my pain level, I’m going spend my energy on living better with it. I think these “researchers” should be doing the same and stop focusing on pain levels. Do they question cancer patients about their pain levels?
This article reminds me of my last gyno surgery. My husband, who has always been super supportive and the one who tells everyone how much pain I am in, so I don’t have to, was explaining to the dr that I had taken the xanax they prescribed because I was nervous about the painful procedure I was having. My dr. asked “Low pain threshold due to the RA?” and to my shock my husband said Yes. I was so upset and disappointed. But before I could say anything he explained that what he meant was…because I am in pain everyday, anything extra was too much and I had no threshold for anything extra. While I let him stay alive with that explanation, I don’t agree with the label. Low pain threshold my ass!! Although I do admit that some days my nerves are so on edge from the pain that simply stubbing my toe can result in screaming and then crying, but that still doesn’t warrant that insulting label.
Do Rheumatoid Arthritis Patients Have a Low Pain Threshold? Heck NO! Just the opposite. RA pain comes in many different types & ratings on that scale from 1-10. I have had them all at once I believe and thought I was being attacked by a Voo Doo curse. Shooting pains up my arms to my elbows, stabbing pains in each elbow, hands felt like they had been slammed in a car door, wrists felt like they were sprained, and I couldn’t move them without terrible pain, paralyzing pains in my shoulders, collarbone, shoulder blades, my jaws wouldn’t open and I couldn’t stick out my tongue…so much more…every part of my body was in pain and different kinds of pain. For 2 years I had to sleep on the sofa because it cradled by back. I can say as far as pain threshold I have had extensive surgeries on my hands and feet and had no pain. Slight discomfort from the swelling. I would like to ask the Rheumy who tells me there is nothing that can be done to make my deformed hands work better or look better …how they would like to put them on their wrists. They just say I have had RA too long for them to be able to help me…which I understand, but they don’t seem to care.
My 8 years of learning to live with Rheumatoid Arthritis has been a lesson in managing the pain and I know I have a HIGH THRESHOLD. It seems that the most up setting is that there is so many different feelings of pain in all my joints all at once at severe levels which will vary along with fibormyalgia it all is extremely intence and can overwhelm me.
For the majority of my 8 years of active and severe RA my toes have had fractures and has mostly felt as though there are clamps tightly crushing them. I have developed tendon distruction, so with the deep extreme joint pain I also feel that my tendons are torn. My MCP joints in my hands hyperextend frequently, distorting my hands and is intensly painful and make my hands unusable.
I also have muscle burning and pain, deep hip, knee, ankle, toe, and my whole foot is a burning intense feelings 24 hours a day.
Handeling this intense pain for years 24/7 can have an effect on a body physicaly, socialy and mentaly, it is exhausting and terribly difficult to function and to feel good about doing things that are important in your life, cause the RA is apart of your daily life and you need to constantly plan around it.
It is the Biggest/most taxing job in my life; the daily adjusting and planning of my day living with Rheumatoid Arthritis and all the ailments which come with it.
So well said, Lexie. Thank you for posting – on behalf of so many who live this same experience.
Pain! I am 33 and been through numerous very painful diseases and surgeries, ect. I’ve also had two babies. RA is hands down the most painful thing I’ve been through. I’m also serum neg and so have been labeled and addict instead. There’s nothing wrong with you, over and over, with pain that while pain pill did help, they didn’t help like they had with other pain. I’d wake with claws for hands, stiff and hurting so bad I thought my hands were broke but that’s not where it started. It started in my shoulders. I’ve even had surgeries all down both arms to fix things. The surgery didn’t hurt as bad as my hands now. They are weak feeling, sometimes numb, and literally feel like they are broken, shattered. The pain in my joints and connective tissues mad me break down and try to kill myself. After drs kept saying I was an addict, wouldn’t help me in the ER’s, and three years of no life, constant pain, and judgement and I couldn’t imagine hurting like this for another minute let along 30 more years. So I screwed up. Now finally getting help so I don’t do such a thing again and found a doc whose willing to just try things. It’s starting to look up and hope things keep going up this slope to help.
Thank you Kelly,
I’ve always considered myself to have a very high pain tolerance. When I broke my arm at 12, I waited 3 days before mentioning it, because i was sure it was just sprained. My Rheum actually said to me that Rheumatoid doesn’t hurt, and that he was in the “disease modification business” not the “pain modification business”. He wasn’t impressed when I asked him to please do his job then, to modify my disease so the pain would stop. I think for a lot of people, they do have high pain tolerance, but when you have internal pain so high that it takes everything in you to function daily.. then yes, and external pain trigger will be perceived as more painful! The “pain glass” is already full, doesn’t take much for it to overflow!
I wonder why a person with such an attitude would enter this profession. This reminds me of another patient’s doctor who told her rheum disease is extremely painful because the nerves are directly exposed to disease activity.
Bravo! An excellent response raising several pertinent and important questions. Namely, why IS money being wasted on these kinds of ridiculous studies when it could be spent on finding relief and, possibly, a CURE??!!
I can attest that I always have had a HIGH pain threshold and so can those who know me. When the RA came on strong, it floored me, but then no one could tell me what it was for almost a year. One unneeded surgery for carpal tunnel and flexor tenosynovitis later and after months of swelling joints and pain, I finally found an excellent rheumatologist who diagnosed me. My point: I didn’t even know I had RA when I felt overwhelmed with pain. So there, researchers, chew on that.
As always, Kelly, you have my utmost admiration for your ongoing research and work — keep fighting the good fight! We love you for it!
thank you Terri. Knowing we are in this together is my main encouragement too.
I didn’t read ALL of the comments b/4 I decided I too must add my 2-cents worth.
I was dxt 2 years ago with my RA. Before that I probably had the symptoms (full-blown flares even) for approx. 4 to 5 years!!! I was told I had “arthritis”…probably referring to OA…which I’ve been told I also have. A few months before my RA dxt I had a dissectomy of a ruptured lumbar disc! THE worst pain (except for my un-dxt flares) I’d ever had! NOT to be compared to childbirth, of which I’d had 2. I’ve had a handful of surgeries as well—one on a fractured (both bones and my heel) ankle–which I believe was part of the incidents that procured the RA into being.
Anyway, I’ve been having low-back and some hip pain along with leg (calves and sometimes thigh) pain. I mentioned this to my rheumy who blamed it on the fibromyalgia. I at first believed her BUT now I’m thinking could it be another disc. Perhaps! But could it be the RA…or both?? I’m leaning towards that. My fibro pain is more of an achiness…which seems to be more across my thoraxic area if my back. I don’t know how a doctor can “tell” pain!! I also might add that once, when I was getting another of my 14 teeth implants, that that oral surgeon made the comment that “I must have a HIGH pain threshold”…so I agree with this blogger on the fact a “study” cannot determine thresholds of pain!!
Along with this I HATE the paradigm health professionals use to measure…the “on a scale of one to ten, where is your pain?” I’ve been known to say “IT’S an 11 or a 12 or higher!!” Thanks for posting AND all of your research on this!!!!
So grateful for your sassy response – it’s everything I was thinking while reading your original response to the outrageous research that essentially calls me a wimp. The invisibility of RA has got to be the most frustrating part of this journey. Although my giant purple knuckles don’t look all that invisible to me. Anyways, just wanted to give you kudos and a big thank you for working to enlighten, encourage, and speak candidly about this road we’re on. You’re a gem!
I agree 100% with your blog entry…. I have had RA ALL my life *since age 10 and I am 55* and I walked around with a ruptured appendix for two days before seeking help… I had a ruptured disc and continued working in childcare for months while working through the PT… no, having RA does not reduce our pain capacity. If anything, many of us have a higher threshold than most which allows us to function on a day to day basis while in pain.
I agree Barbara – I’ve heard dozens of similar stories from patients. Ignoring pain & increasing our tolerance is how we survive – it is one of the talents many of us develop w/ this disease. It’s just dumb to suggest we just “feel” more pain.
Rheumatic Fever @age 12, not diagnosed with RA (Still’s Disease)until 1996. After 3 babies, three ruptured lower back discs (two surgeries), bulging neck discs (dr said if he had my neck he would be screaming), a broken ankle with ambulance trip and 1 1/2 hrs in ER no medication (2 surgeries for the ankle, metal plate and seven screws) plus numerous other surgeries — I also know I have a very high pain tolerance. No study will ever convince me that RA patients are exaggerating their pain levels. The sheer unending, unrelenting pain is real, but I just keep smiling through it all and most people around me never know how bad it is every day. I am blessed with a great rheumy and a wonderful understanding husband, but I want others to understand what a battle we face every moment of every day.
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I have had this nasty vile disease for almost 15 years. After several surgeries and injuries prior to RA diagnosis I know what pain is and this is unrelenting. Forget the Nsaids, Dmards, and Biologics. It is truly there all the time and without pause. My work kept my focus elsewhere for a long time, but the damage is much worse now and I am now on medical leave. I had one of the worse flares I ever had this past week and could not get into my doctor so she could view the severity since they had so many other emergencies and issues. Just kept taking my meds. Thankful I have a wonderful hubby who was caring for me. Yes, I am typing single finger since the left hand is now basically not usable due to inflammation. I refuse to have some study categorize me or anyone else with this disease as either not relevant or the pain is less than it truly is. Thank you Kelly and all out there who keep up this fight.
I have been told in the past that i have an abnormally high pain threshold. Did that suddenly change when I got RA, I think not! I habe never experienced such pain as I have with this disease, and I honestly do not believe doctors understand to toll it takes on our bodies and our minds.
I think we have a very “high” tolerance for pain. Someone said to me once, oh, I thought you were feeling better because you haven’t “complained” in a while!!
My name is Rose,, some of my earliest memories from when I was at least five waking up hollering in pain telling my mom my knees hurt and in order for me to sleep she’d rub my knees with this warm cream till the pain subsided and I could sleep. Doctors told my mom it was growing pains it will eventually go away. It never did year after year, day after day, flare ups that would leave me bed ridden mostly it was my knees and they show the damage they have taken. Then as I got older it spread to my ankles, my elbows, my wrists my fingers never really hurt but they have always looked crooked. I didn’t finally seek help till I was eighteen. I got my first real job waiting tables. My first real shift, thirty hours in three days the pain was so excruciating it was worse than when I dislocated and broke my radius I couldn’t leave my bed to use the restroom with out crying. I was then finally told the truth i have RA I take around nine pills daily. Since I continue working I’ve found my fingers will hurt, my right index finger is twisting and I can’t bend any of them back at all. My doctor tells me that my stiff gait is gone. Now with out insurance and medication the pain is back my shoulders never stop hurting I can’t handle cold at all its like knives in my joints then for a few hours after wards it’s a fight to chase the stiffness away. I’m nineteen and scared will I become crippled, will there come a day when holding a pencil will be unbearable, will I be able to braid my hair once it finally grows out, will I be able to lift my future children up or play With them. The notion that our pain thresholds are lower is ludacris. I can take burns cuts a cleft palate repair at fourteen years old (now that was painful) flare ups are something a person has to experience. Waking up and having to wait on your body to get working before the day starts then fight to keep moving through out the day, that is work and it can be painful. I’m nineteen and I fight my RA.
yes you DO, Rose. Go girl.
I don’t know about everyone else and cannot speak for them. I am newly diagnosed with RA (since Oct 2015) and am now 60 years old so have had some time + 2 babies to work out what hurts and does not and I can tell you that I am in the worse and most prolonged pain I have every know and it is unrelieved by anything. Edge taken off for an hour or so maybe by strong painkillers but never actually GONE… I wish.
Good luck folks. Gill
Thanks for the laugh, I’m just now getting over a miserable 4 day bout of the stomach virus. I have to admit, it’s one of the illnesses that takes me down. Although, I did not writh in pain screaming on the floor. I’ve broken bones and much like you had one childbirth that was a doosey..So I have a little idea of pain.
The night my R.D. became full-blown I did scream’ once after 8 hours of thinking someone had just shot my kneecap off. I had never before’ nor since delt with such debilitating pain. The fact that I waited 8 hours b/for I went to my family doctor (not the hospital) might show what I’m made of. When I sat down, he looked in my eyes and simply said, I believe you. Something is wrong, my guess is Lupus or R.A. It scared the bejesus out of me, but we went straight to the lab. An hour later he called me back with the news… 2 days later I found this site!
I don’t visit as often as I first did, but now and again I need a few words of understanding and compassion, thank you for providing both…
… and a few laughs to boot!