Email a copy of 'Does Rheumatoid Arthritis Pain Really Hurt That Much?' to a friend
Loading ...
E-Mail 'Does Rheumatoid Arthritis Pain Really Hurt That Much?' To A Friend
Loading ... Loading ...235 thoughts on “Does Rheumatoid Arthritis Pain Really Hurt That Much?”
Comments are closed.
Low pain threshold??? What a load of hooey, I ended up in the emergency room with ruptured ectopic almost too late, why? Because I was so used to pain I couldn’t tell if the pain I was having was “bad enough” to get everyone up in the middle of the night. The MD asked “weren’t you in excruciating pain?” I honestly couldn’t tell compared to my
normal pain. I live every day with it! You won’t believe what I can endure, what I DO endure w/o complaint. Heck, when I say I feeling great, I can assure you I am still in pain — but great compared to a flare. I dare some MD to tell me I have a low pain threshold to my face! (done ranting)
Katey,
I have similar stories. Seems everyone thinks pneumonia and kidney infections can hurt so they seem a bit alarmed when I just take their pain in stride.
Haha. You are “done ranting” – but I’m sure not. I want to know WHY this is what they spend time studying instead of putting effort toward a cure? I have a lot more to say since this is not just one study – looks like a prevailing opinion about us.
Katey, me too…. I nearly died because of it.
OMG!!! That makes me furious! Low pain threshold my big inflammed toe! I’d like to see some of these physicians and researchers deal with what we do on a daily basis and STILL accomplish what the majority of us do!!!
I had my son with NO epidural and NO pain meds of any kind. Tell me I have a low pain threshold. Men always equate passing a kidney stone to having a baby…and every man who has made that comment to me was questioned, “Did you take pain medication? Sorry, buddy, but my ‘kidney stone’ weighed 8 lbs 5 oz and I did it without pain meds…in fact, I had my ‘kidney stone’ for 9 months before I ‘passed’ it. Without the help of pain meds or an epidural.”
Yes! and why are they wasting time on these so-called “studies” instead of developing a cure?!? THAT would be a lot more worthwhile than telling us, once again, that it’s “all in our heads”!!!!
omg omg omg…and I can’t even say what I’d really like to call those researchers!!!
Tina,
Sorry to bring up such a downer. But I guess we need to know what is the score so we can try to fix it.
I agree about childbirth. I was going to mention that next time in my “reaction” post.
Just what we need away to suggest it is all in our heads. RA destroys are joints without treatment, yet we are super sensitive to pain. What a bunch of poppy cock
Logically, it does not sound reasonable to me that the destruction could occur w/out intense pain.
I had 3 babies without pain meds or epidural AND had a kidney stone get stuck {it is like childbirth}, not to mention the REAL pain of RA and all of the complications that have gone with it, like the surgeries I’ve had as a result of it.. I know pain. I would like to see a study done by a group of researcher’s with RA. And your right, WE KNOW WE ARE IN PAIN! FIND A CURE!
Good points.
Wow. Just wow.
I’ve always thought that I had a high threshold as well (you know, with being in pain for years). I’m not afraid of medical procedures, nor of being in pain (I am super careful, and certainly have had my moments when I bump something). But pain doesn’t scare me. Because I know I can take it. Because I have taken it for nearly 10 years. How can my joints disappear(multiple joints, at the same time) and take some of my bone along with it (not to mention wreak havoc on tendons, muscles, etc.) without some pretty extreme pain?
I hear all the time from RA patients that they think they have a high pain threshold. They experience extreme & chronic pain & say so little about it. If we say anything at all, as we read in comments all over this site, there are sighs & gasps & “Oh me too only mine is worse.” It was a shock to find out that the academic world does not see us the way we see ourselves.
You said it so well: How can bone & tissue just vanish without pain? Please.
I’m not even sure where to begin. Wow. However part of me isn’t surprised.
The part that is surprised lies in knowing I’ve walked for weeks with a broken heel bone, and a fractured hip. At the same time. I didn’t find out it was so until a routine check-up appointment. It’s the part that pushes myself to exhaustion to just get through a day of typing and random jaunts through my work place. It’s the part that has a friend who has Adult Onset RA, (mine is JA), who fell down the stairs, broke her wrist to where it was poking out her skin and was just like, “huh, guess I best get this looked at.” So in reality, they are full of poppey-cock.
The part that isn’t surprised is the part that is working in the arena of neurocognitive and philosophical research. I read these studies and the opinions of the “experts” daily and you’re questions about how do they know what this is, or what that really feels like are justified and sadly, very right on target. The study of pain perception is difficult just in its basic nature, and will by that same nature have variables unique to each and every individual based on their own physiology,cognitive development, life experiences, the chemical composition of their body/brain connection at the time of the pain and, of course, their personal psychology. It’s a tricky area to make any kind of broad based assumption.
I think that inherently the problem lies in who is interpreting the data. Statistics can be interpreted to support about anything, if you manipulate their descriptive language correctly. It’s also easy for an interpeter to see a person check the box that says their pain level is a 9 out of 10 and for the interpreter, who may not…probably doesn’t…have any personal knowledge of what their test subject is in fact feeling; it would be a short step for the interpreter to chalk that 9 up to an overactive, or low pain threshold. After all, I have a little bit of arthritis in my index finger and it’s not THAT bad. This person must just be making it worse or they are just plain melodramatic. (I say that with a tinge of sarcasm I hope you all know.)
Just my thoughts, for the two cents they might be worth! 🙂
Kirsten
Thanks Kirsten.
Here’s the thing that makes me want to pick this apart: There are tons of these studies & they actually set out to study this. Why are they looking for this? It’s not some accidental “judgment” by one researcher, but the articles go back for decades & it’s what they are taught in school… why?
I agree with you, Kelly. I thought I read a recent abstract that discussed how the pain in RA might become “centralized” in the CNS and that cytokines did increase in response to “noxious” stimuli, whatever those were. Did fer to it here? It sure seems like some of the researchers are trying to “discredit” RA as a more minimal condition.
I wish the people who say this could feel what i feel right at this moment, i sitting with a icepack on my very swollen hand, i have a nodule on my ring finger so when i wake up i have to massage my finger so i could get it straight, i walk sideways down the stairs as knees hurt, I am glad my rheumatologist believes the pain as he asked on every visit 1-10 what is your pain level
I think it would be nice if they measured the response of those with RA by starting with the statement, “rheumatoid arthritis sufferers have a high pain threshhold” rather than the reverse. Like many of your other commenters to this post, I also gave birth to my daughter without pain blocks or medications. Did it hurt? Sure it did, but I prepped before her birth by learning Lamaze breathing. I also knew that once she was born, my pain would end — so there was a definite “light at the end of the tunnel” during the event. I can’t really compare the pain of childbirth to the pain I sometimes experience from RA.
RA pain varies so much. Today I’m only a little achy/twinge-y in my hands and wrists. It’s annoying but pretty easy to handle. But there have been times when my hands or other joints have been in such severe flares that the pain was, literally, overwhelming. There is no “light at the end of the tunnel” with RA, because even if the pain subsides over time, I know that it will be back before long. The thing is, no matter the intensity of the flare, I handle my pain with as much grace and courage as I can, and I rarely complain about it. That makes me feel that my “pain threshhold” is quite high, rather than “low”, as these studies suggest.
The hardest part is that unless you experience it yourself, it’s very difficult to comprehend another person’s pain. Additionally, what hurts just a little to me might feel horrible to you, and vice versa. So back to my original point: These studies were skewed, I believe, by the initial perception that people with RA are wimps to start with. Shame on them.
Another great post, Kelly. You’re my hero! Also, I hope you’re feeling better (whatever your perception of “better” is). Keep up the excellent work.
Wren – I think you made some really great points, particularly about the “light at the end of the tunnel” and how hard it is to understand RA pain when you haven’t experienced it.
~Mariah~
After going through years of “it’s all in your head” from doctors, who ran the gamut from condescending to straight up telling me that I was drug-seeking (I was, but not narcotic…whatever worked would have been fine with me, still would be) this really tees me off…Can there really be that many people who exaggerate pain to get drugs? I know that it would have to be much easier and cheaper to get meds off the street. It makes it even worse now that there is a diagnosis because that was my HA! I told you so moment, and now they are still saying it is all in your head?!!
I also heard for years the same thing including from my wife…..but of course we know its not in our heads.I do think my people do try to get drugs and do about anything to get them which in turn affects us who really need the drugs.It was years before I got the right Dr who figured it out.
I would gladly trade places with just one of these researchers and see what they think then. Stay safe and take care,bernie
HHHMMMMM! OOPS my wooden spoon that I use when my “hypochondria” says I’m in too much pain to type, got stuck for a sec on the h and m! Who pays for these most ridiculous and absolutely un-needed studies? No you can’t possibly have arthritis in your back, nobody told my back! I’ve been in constant pain since I was 13 but I’m just a “Hypochondriac” is what the brilliant Docs told my parents and they believed them. I mean why not they were DOCTORS after all and I was 13 wanting attention! I learned ways to disguise my level of pain so nobody knew if I hurt or not, I had 3 children like it was nothing. It’s harder now but I’m 49 and I have Ra and OA to add to the Fibromyalgia I’ve had all my life. Whoops! Sorry I got off track for a minute there, my spoon has a mind of it’s own sometimes lol. Instead of paying for such asinine studies why don’t they put the funds towards something worthwhile like…oh I don’t know maybe….FINDING A CURE FOR THIS DEADLY BONE AND ORGAN EATING DISEASE! I’m not done ranting but my spoon is in alot of pain now and is going to take a pill and nap but, rest assured that my spoon and I can’t be held down for long! LOL :rose:
Hello Alice,
I was reading your story and noticed you mentioned your back pain, and was told RA was not usually in your back. I too have been told by my Rheumy that (my worst pain) RA does not affect your spine. Then refused to even discuss the subject. My Rheumy is North Korean, and is very very quiet. He is only 43 and must have not studied RA and RA sub-groups very closely. My hands are stiff, my shoulders are like razor blades are being inserted, my hands actually curl when I flare. Heels burn so bad that I cannot get out of bed to go to the bathroom. Fatigue so extreme, (whether it is my Fibro or RA)that I am in another “alternate existance world” for two straight days, in bed sleeping. No hand-grip at all, so I drop things, cannot do intricate things for my children, such as de-tangle necklaces. Almost like useless appendages. I was tested and am sero-negative. The worse pain I have now, since the other RA pain/stiffness has been finally eased somewhat with Enbrel 50 mg once weekly in conjunction with OxyContin 40 mg slow release two or three times daily. And now the Enbrel…..I had to actually ASK FOR with my Rheumy. I had been on Simponi for six months, with Mexotrexate. No change. Flares so bad coming every three weeks, down for the count in bed, and in a “in-between world” where I felt not alive, but also not dead. Twilight Zone. So much inflammation in my body, it lead to a nasty case of Peri-carditis. More Prednisone. Or did I not mention that each time I slipped into the “Twilight Zone” crying and holding up my curled hands, Doc would prescribe good Ole’ Prednisone. The wonderful poison of the RA world. Yes, it helps greatly. But cannot be on it for very long. When you’re done, you’re right back where you started. Only 5 to 10 lbs heavier (even though you were not eating) Pretty soon, you don’t recognize yourself and have to shop Goodwill for fatter pants. You hate yourself and hate your life and the hand you have been dealt. My Lumbar Kyphosis is VERY severe, and has been since my early 20’s. I also have thoracic lordosis, with an 11% curvature. Slowly increasing, losing height since my early 30’s. My sacroiliac joints are absolutly on fire. 24/7, even with OxyContin. Massage feels REAL good. Heat feels real good. Most times, after the pain returns after my doses of Prednisone, my feet are only felt if I look down and see them. Otherwise, I would not know they were there. I have to be very careful trimming my toenails because I don’t feel the clipper cut through the skin. Sciatica is a very common visitor to my house as well. It is like a “toothache” in your leg(s). The top part of the buttock area, on both sides is so painful that you cannot push on the areas without bringing tears to my eyes. The middle of my back feels like a knife has been stabbed into it. Right at the “bra strap” area. Been DX with Degenerative Disc Disease, RA, OA, Fibromyalgia. Got myself a new Rheumy that I will see in May. He has 40 years in the field, and maybe he will listen to me. I know I have Ankylosing Spondilitis, as my late father did. His lower spine became fused together and his thoracic area was very painful, hard to take a deep breath. I know I am on the right TNF blocker, Enbrel,for AS. I just need a Doc to LISTEN to me and validate my feelings. I take Soma, 350 MG 3X daily, but with taking care of my 10 and 12 yr old daughters, groceries, and life, the muscles around my lower back are hard as a rock! If I bend over from the waist, to put away frozen goods, I become “locked” in that position. I just don’t see why they cannot see the AS in my Xrays or my MRI’s. I obtained the DVD of my latest MRI, and I saw the signs clearly confirming AS, from the pictures posted on the internet journals from well known doctors. Degenerative changes from one year ago, not addressed in the written assessment of the MRI by the Radiologist. I am just so fed up with the medical community, and that I have to be SO proactive, what are we paying them for if WE are doing all the investigating??????
Sorry. I did not mean this to be so long, but you mentioning your back really caught my attention. I feel better. I do not have anyone to talk to regarding my situation. My husband gets angry and does not want to hear anything about it, and even says sometimes, “Awwww, I think you just want the attention. You need to stop reading and believing everything you read on the internet. I am tired of listening to you. That is all you talk about” And this is not true. It really hurts my feelings and I usually cry in private. I feel like I am in a box. And I have no one, and do not wish to get close to anyone because I am unreliable and do not know how I will feel on any given day. Would you be my friend?
Dearest WT52, I’m so sorry you are in pain so often, most of us are :reallyangry: and it is truly unfair,I feel, mostly to those of you with young kids. I’m not saying that those of us without small ones have it better off so please don’t anyone get mad at my spoon and I okay! 😀 Yesterday I spent several hours at the surgeon’s office that my pain doc referred me to. After, jointly can u believe it, looking at my recent MRI and XRAY we, yes WE, decided that surgery was the only way to go. I mean can you believe it I was actually CONSULTED about my condition! :laugh: I have a great new rheumy, no side effects to mtx and will have 2 discs removed April 29 from my neck which will hopefully relieve that pain. You ask me to be your friend, sweetie I already am your friend! There is not a soul on here that is not already your friend we are all connected by this horrible disease that is eating us alive and if it has not already destroyed our lives it is still trying. :pissedoff: GOD and my salvation keep me going and smiling, filled with His joy and peace. Another friend, a good day a smile passed my way and I continue to pray for a cure! I am your friend from now until always. You may count on me to give you a smile and (((HUG))) when needed and to be HERE for you and anybody who needs the Love of Christ that I am here to share. In HIS Love, Alice :rose:
So tired of hearing the “not RA in your back” BULLSH*T. Somethings not right there…….
Hope you don’t mind my minor edit Michael. I’ve sworn to keep it a G rated site. We have kids who read. But I agree with your sentiment.
I see lots of references to childbirth. I’m holding my fire on that one until next time. I was thinking I need to add a personal response to this blog, but ya’ll are doing one heck of a job on your own so far…
A few random thoughts here. If these so called “professionals” want to study pain they may want to see why people that have broken bones are offered pain meds. immediately. I guess these same “professionals” feel that bones being slowly eaten away and grinding against each other with every movement are not painful. When a sprain with swelling is treated as an emergency with pain meds. given asap, then swelling of joints with RA is a pain all in our heads??
Does it truly matter if people with RA have a high or low pain level? Does this assessment have anything to do with getting closer to a cure for this disease? Are we as RA patients being pushed back 30 years to the age of it is “all in our heads”?
It seems to be the fall back position of these “professionals” that if they can not make it better with the available medicines than it must be all in the patients head. I have one small, sadistic thought to these “professionals”. A device that resembles a tiny cheese grater needs to be surgically implanted into several selected joints of these “professionals”, make them deal with it for 6 months, and then tell them they are “catastrophizing the situation and there pain levels. Would they label themselves as “maladaptive”? Maybe their research dollars would then be refocused on finding a cure and stop wasting time trying to dismiss those of us that are the owners of RA.
So perfectly said, Jamie!!
You got me thinking again, Kelly! ~;o) Thanks.
http://fromthispoint-forward.blogspot.com/2010/02/in-re-percieved-pain-v-actual-pain.html
I was always told that i had a high pain threshold, after laying in hospital for 7 days after being opened up to have my bocked bowel manual freed, to have it splitting open through mrsa, i then filled a bag daily with poison, until 10 days post rupture when they returned me to theater and removed 7 abcesses and 6 pints of poison, i now have it on my notes patient has high pain threshold. I have had other times that this has been said to me also, I can tell you that RA Pain is like no other, you dont know what to do to help it, it then leaves you feeling exhausted and drained after flares, you just get over one and you then have another flare, seems theres no let up. Your life jst seems to go on hold. I was a hairstylist, and have had to give it up, because i cant lift one arm due to the shoulder, back wont allow me to stand for to long, hands wont let me grip combs ect the list goes on
I agree about the high pain threshold. I have a long list too. Why do they even want to do this? What benefit…?
btw: Cutting hair was one of my many mom jobs that is almost impossible. I had to buy an electric shaver & learn to buzz my sons’ hair. Still, they go months in between haircuts waiting for a day I say my shoulder or elbow or wrist or fingers can handle it.
Unbelievable, these studies are unbelievable. That is about all I can say without getting myself into trouble.
i am appalled!! where is the respite for us??!!! we deal with insensitivity of those who are haven’t even heard the word Rheumatoid Arthritis, then we have these so called experts indulging in such mindless research. really.. they need counselling on how to put time to better use!
Pain is a subjective experience. Period. Attempts to objectify, I hope, are attempts to better treat. But, they should consult with pain specialists who are way ahead of them-I think it’s futile. I could actually imagine that our pain thresholds are lower. We’re exhausted. The implication is that this is all about coping. Pain has a lot to do with neurological pathways and what our brains do with the information. If our bodies are constantly dealing with pain-stands to reason that we become more sensitized.
While I agree that coping styles contribute to the pain process, I think the disease is the major culprit. And…okay, I have a low threshold for pain. Now what?
Amy,
Reasonable points. True about chronic pain wearing you down.
One point though: this RA pain was excrutiating on day 1. Each new joint that was affected would hurt like a gunshot for the 1st few weeks. Then a new one would begin full force & distract me from the last. It was not chronic at that point.
Still, you are right: NOW what?
I think your point is THE point…with RA, the pain is new all of the time. I was speaking merely of the emotional and mental toll of pain you have to constantly anticipate, experience, and negotiate. It’s tiresome, and if considering life with a body that is changing and may someday be disabled=catastrophicizing, well, guilty as charged.
I actually developed a better understanding of the uniqueness of RA pain (to your point) after reading Dr. Aranoff’s treatise on chronic pain. He may have referenced some of the same research noted here-but I felt better educated on the nuances.
Thank you for the thoughtful commentary. RA can make you feel alone at times, and reading
research results like this can make one feel more isolated. Knowing there is a community that understands is empowering.
to me, unless you have this pain you have NO CLUE! Here is what I would LOVE to do. I would love to be able to touch the person or people who did this study and wrote this crap and give then my RA. here you go feel this! and ask them know where is your pain threshold? I have pain everyday.. I forgot what it feels like not to have this pain. to me we all have a higher threshold to pain cause we have it all the time and have learn to deal with it so we can live a life! just add these people to my list of people I want to touch and let them feel RA!
Would you believe I have heard that before? 😎 It’s hard to believe that just a day of this wouln’t make a difference.
I find it frustrating that the so called “experts” are so quick to write us off as a bunch of whiners with a low pain threshold. I have broken 14 bones, had 3 concussions, had a knife stuck through my left hand, the list goes on. I consider myself fairly acquainted with pain … I would like to know what their credentials are.
I would gladly trade another broken bone or concussion for a year pain free from my RA.
Good post Kelly. It made me think a lot about my experience. Before RA I was first diagnosed with fibromyalgia. The doctor proceeded to tell me that it was “all in my head” literally as current leading thought about the development of fibro is that it is centrally mediated. Meaning that pain receptors in the brain, etc. are overly sensitive leading to a “low pain threshold”. So if that is also true for RA it can change the way pain is treated. Entirely different classes of drugs will be looked at as well as alternatives like biofeedback. It will mainly focus on psychoactive drugs as opposed to narcotics. They can call it whatever they want, I just want to see aggressive and effective pain treatment and that should be the outcome of their studies.
RA patients have a low pain threshold?????????????? Good grief, what a misnomer!!!
:chic: I take it you don’t agree with that either?
I also tend to think that we have higher pain thresholds. I have at times however wondered if there might be a personality trait of holding tension in that might at least in part contribute to development or worsening of RA.
Got a new research project for ya Kelly. If fatigue is not part of the inflammatory component of RA as proposed in the linked abstract, then I wonder why things like prednisone and TNF inhibitors and other dmards seem to help many with the fatigue component (even if is doesn’t totally get rid of it)? I haven’t researched this guy enough, but I sometimes wonder if he’s got biases against RA’ers, ties with insurers or something, even though he’s a big US researcher in RA.
Is fatigue an inflammatory variable in rheumatoid arthritis (RA)? Analyses of fatigue in RA, osteoarthritis, and fibromyalgia
http://www.ncbi.nlm.nih.gov/pubmed/19918042
Hi Chelsea,
It will take me a little while to get through these studies – I have a lot on my plate. I have read quite a bit of Dr. Wolfe and I don’t think his biases are anything that is “corrupt.”
Your thoughts here are interesting. I believe that patients ought to be in agreement about whether remission state is declared. My experience is that they do not ususally. Dr. Wolfe & I may not agree on this. Not sure.
On the fatigue issue: The tnf’s work on the fatigue, yes. But, I don’t agree with those who refer to TNF’s as “high powered anti-inflammatories” – It’s much more complicated. There is a complex process & for most patients the interference of the TNF is successful in reducing fatigue because it reduces activity of cytokines that cause fatigue.
The prednisone effect would be a completely different reason. The cortisone has an affect on energy which offsets the fatigue, not actually treating the cause.
Just the views of a patient, of course.
Thanks for interesting discussion.
I could be wrong and don’t have the paper to read, but wonder if they are inferring that the fatigue factor is not disease related, ie – that it may be “all in our heads”. I hope not.
I looked at this one. It makes sense. I agree that fatigue may not be an inflammatory factor for the reasons in my previous comment. I don’t think they are saying “in our heads” – just not purely inflammatory. There are many types of cytokines, so maybe some cause more pain or fatigue or swelling… Also, do you know how they do this? By their National DataBank online or via postal mail – using forms – they did not examine the 2100 patients. this is how they use such large numbers. It has advantages and disadvantages.
Yeah, I saw it was by database, but his papers on the advantages and disadvantages of databases aren’t available for free anyway. I read another of his papers on work disability in RA and sent the first listed author a comment on the fact that they didn’t address insurance factors into their research or address it in their discussion.
How well do you find they receive patient comments?
Kelly Young says:
March 12, 2010 at 9:09 am
How well do you find they receive patient comments?
I’ve frequently requested articles from doctors and they are usually glad to send them. I keep it short, thank them for their work in the field and request the article so that they don’t feel an obligation to do anything other than send an attached copy, which most do. Occassionally I’ve made less specific comments about an article and some have been very nice and even tried to give explanations of something where requested. Some are very helpful at times.
This is the first time I’ve sent one stating or pointing out something about the article in general, although I really just posed it as alternative situations and said I thought that might affect some cases/responses. I didn’t criticize really. I don’t disagree with the article other than wishing they’d inculded this variable. I do realize it may not have been feasible, but they usually address such things in the discussion section of the paper and this one did not. I’m not sure I expect a reply, and didn’t write it with the tone that I was expecting one, but rather left it open. I know they’ve read the email, but they have not responded as yet. Not sure if they will, but it would be nice to get a short comment on perhaps why they did not included that aspect, since it seems like it would be a significant factor in the present day.
Very good. It has been a long time, but I was not as wise as you. Hopefully, I learned from the experience. :chic:
Well, I never did hear back from that researcher about how the insurance situation, or certain work situations and economics thereof, might affect RA’ers decisions or needs for taking disability. Perhaps they will do a new study incorporating those aspects, but perhaps it was not possible with the database info they had.
Ah ha! It’s not fibromyalgia, it’s “polypain syndrome” from a variety of sources:
“Thus, FM polypain is all about osteoarthritis, degenerative disc disease, tendinitis, bursitis, and fasciitis. These are unquestionably rheumatologic disease conditions that should always be diagnosed and managed by a rheumatologist. In the face of this, the recommendation by Shir and Fitzcharles for rheumatologists to abandon their care of patients with FM1 should itself be abandoned. Moreover, the Polypain Model should reinvigorate rheumatologists to better define themselves as the most qualified specialists to diagnose, treat, and otherwise manage the musculoskeletal and pain components of chronic widespread musculoskeletal pain. To further enhance the central role rheumatologists play in FM polypain, it is vital to reassert and expand the role of rheumatologists in managing the preeminent component of chronic musculoskeletal pain: the pain and its source. ”
http://www.jrheum.org/content/36/12/2836.full
If you’ve been reading what either the docs or the patients are saying, it’s clear that this Fibromyalgia/ RA thing is a mess. There is so much to sort out. I commend you for trying. I will listen to any reasonable theories as I am working on my own. 😉
Agree, it is a big mess. Wolfe does not buy FM as a separate disease entity unto itself. Not sure where I stand on it. I do think something physical exists, perhaps it is more than one thing such as suggested above, with other psychological factors intensifying it. Dunno.
If you look at the “old” books, the symptoms called FM are listed for RA. Just saying.
Of course this is not the answer for those who do not have RA. That is a separate case.
Agreed, and I look forward to your post on FM and/or FM with RA. I look forward to all your posts Kelly, and appreciate very much all the thought and research you put into them. And it’s definitely one way to help distract from the daily chronic pain for a while, isn’t it? 🙂
I do not know how long it will be. Have you ever heard the expression: “That’s so far off, it’s not even wrong”? I’m trying to avoid that. :chic:
O.k. it will take more time to delineate Wolfe’s biases, if any. At least in one study, he acknowledges that patients are “requiring” better outcomes than those currently measured regarding “remission”. He acknowledges in another article that patients and rheumatologists generally agree on their “remission states” but a good definition of remission does not exist yet.
Sorry, you probably have other posts where this might be more appropriate to add to.
“Values identified here suggest patients require better outcomes than are found in patients who are in Disease Activity Score-28 remission or OMERACT low disease activity states”
An excellent example explaining RA pain was left recently on another post. Anyone researching RA pain might find this anecdote helpful – click here.
I have recently been told I have R.A. It is very painful! I cant do simple tasks like brushing my teeth, turning water on to wash my face, it is the worse pain I have ever had to deal with!
Sorry to hear it Beverly. I agree.
Kelly, in regards to the first article you linked here
with the quote “maladaptive physiological responses to stress” play a part in the hyper-algesia of RA.” I read that and another article of the same year 2009, where one of the researchers was the same in both. First, that quote is talking about PHYSI-ological and not PSYCHO-logical. To me, that pertains to the functioning biology and not the mental dysfunction – although sure, the first physical dysfunction can lead to mental dysfunction particularly in chronic pain conditions and there does exist a field of study called “physio-logical psycho-logy”. I didn’t get into the Hopkins article, which may very well state that they think RA patients are mentally maladaptive and that is the actual source of their pain which I generally disagree with too, but I just wanted to say I didn’t take the first article as trying to support that hypothesis at all, but rather did appear to be trying to find actual physical reasons for the “pain experience” of RA’ers. The other 2009 article I read was here although it was originally published in the same journal as your fist article: link
To that end I don’t mind them spending money on trying to figure out the actual physical sources of pain in RA, and perhaps as the duration of physical pain goes on in RA, there is a change in pain thresholds of certain types. But to me, the intitial source IS PHYSI-cal and not PSYCHO-logical, even if it may or may not affect PSYCHO-logical functioning as time goes on. I guess that doesn’t change the fact that plenty of docs briefly peruse these “headlines” and article “titles” and interpret them to mean that we’re a bunch of PSYCO-logical whimps.
We have a low pain threshold? 3 babies, no medication. 3 achilles surgeries, no pain killers. Injections into nerve damage in foot – no medication.
I broke my arm in March. Doctor took me out of the cast too soon and it broke again. Minimal pain medication. Changed doctors and he finally set the bone – no pain medication.
Don’t know what I’d do if I had REAL pain.
You are singing my song, Carol. 😉
Low threshold for pain???? I have both RA and Fibromyalgia and not only do I not have a low pain threshold, I’ve had more than one doctor over the years after surgery’s for different things actually say I am one tough lady. I’ve heard more than once how surprised they are at my level of activity too soon and have been told to slow down and rest. After one surgery I had a lot pain and the surgeon told my husband if she is complaining, she’s in a LOT of pain.
Although my Rheumy listens patiently to all my pain complaints he at first irritated me by prescribing an antidepressant that is commonly used for Fibromyalgia. I am not depressed, (I know this because I was there many years ago.I know the signs). I have to admit though that even though the drug does nothing for pain, I do have a slightly less anxiety & stress level at my core so I’ll continue to take it.
I have a ton of other meds for the RA, Fibro & a heart condition a couple of those are for pain. It would very easy for me take the pain meds all day long every 4 hours, I refuse. I will not take more than two in a 24 hour period simply because of what they are and I will not be drugged up with narcotics.
Another thing that irritates me is the common comment but you don’t look sick. I’m told you look great, you look so healthy, I had no idea you’re in so much pain. It’s not that I want to look sick or be a pity party person, but I think these comments to me mean that I do NOT have a low threshold for pain and it shows by these comments!
I agree – you sound tough to me.
Before diagnoses of RA I had two children by c-section. No pain medication was required by me for either one afterward. In my teens when playing softball, I dislocated my shoulder. My coach put it back in place and I finished the game. Now with RA, I cry almost everyday at some point from the pain. How is it possible that I now “magnify” pain when before it was obvious that my threshold of pain was rather high. I am completely offended. Maybe our perception is altered because there is not many days without pain and so therefore we have difficulty handling the pain in anyway but pessimistically. I suggest that these learned researchers walk in a RA patients shoes for a few days to get some real perspective.
I agree that maybe our perception is altered because we don’t have days with out pain. I tell my husband this is so much different than pain after surgery or an injury because you know it’ll be temporary and be gone. Dealing with every day pain and knowing it’s never going to go away frustrates me the most. Trying to plan a day ahead is sometimes impossible. Unless there’s have an appointment that I have to go,it’s becoming more frequent for me to put off errands or a ‘quick trip’ to the store because even the simple errands are dictated by that days pain level. ‘Quick trips’ don’t exist for me anymore.
The words about “quick trips” are familiar. If I claim I will make a quick one, I can hear my boys sigh.
You sound tough to me, Betty. I agree that living with pain year in and year out without it ceasing can alter perceptions, but I would think it might cause some patients to begin to “accept” a certain amount of pain as “normal.” Either way, I was don’t think they can use that to excuse / minimize the extreme pain patients claim to have directly at the time of onset.
If I have a low pain threshold.. then why did i walk on my knees for 6 years before getting knee replacements! The surgeon even said that he was shocked i was still walking! ARGH!
I agree, Jenni. It is not logical. The argument of a low pain threshold for RA patients seems to have no merit to it, does it?
Hi Kelly, VERY interesting – thank you again! To me the only people that really have the answer to that question are those enduring the pain – like us. My answer is ‘YES’ there are times it really hurts ‘THAT’ much! Laughter, giving and finding things to entertain the mind helps me endure it or get my mind off of it BUT it doesn’t take it away. I don’t really care what anyone calls me – if they feel drama queen fits go for it :P. The one thing I would like to have more control over is the emotions that come along from dealing with the pain. I don’t like to get short with people but sometimes when you just don’t feel well inside it is hard not to be. Once again thanks for all the information you put out there for us all!
Hi Jamie. Good points. Sometimes, it sounds like “We can’t win for losing” as my mom used to say. If we smile and push through the pain, then it must not be so bad. If we put our foot down and say we need pain medicine, then we have a “low pain tolerance.” 😛
Low pain threshold or not does not change the FACT that we are still in pain. I expect if the facts of RA were along the lines of :”the pain you experience with your disease will end in the next 6 to 8 months, a year tops” my pain threshold would rise dramatically just knowing there was an end in site. For me it would be much easier to deal with my pain if I knew with a certainty that it would end.
Imagine if you will, a healthy person that has just sprained their ankle. The pain is severe, but it will be temporary. The ‘sprainee’ knows this and therefor putting up with the pain is easy.
Now imagine the same person upon spraining their ankle being told as fact: “this particular sprain will never heal…the pain you are experiencing may become worse with time, and if the pain leaves it will only be temporary” How well do you suppose the sprainee will put up with the pain now?
It is probable that some doctors believe this theory and adjust treatment accordingly which in my view could do real harm.
I think that under treating RAers pain on the basis that our thresholds may be lower is ridiculous, and might actually aggravate the problem. If an RA patient thinks that they may not be treated adequately for their pain then they will be even more focused on the pain and their threshold will drop that much more, a snowballing effect.
Interesting points Lisa. I love the sprained ankle analogy. I’ve also said RA is like having a broken arm & a sprained ankle & tennis elbow, etc all at the same time. But like you said – permanently.
Gee, they’re actually surprised to find out that we still have so much pain! See this article:
I get maybe 3-4 hours per day where the pain is minimal and then it gets worse again. I know my work contributes to this, but it was still that way when I was in a desk job.
Infuriates me that anyone wold say we have a low pain tolerance!! When I gave birth to my 2 youngest the docs were amazed at my pain tolerence. I refused any pain meds. It was all natural and I really didnt feel the contractions. As for RA, Id rather give birth everyday than to experience this pain. Before i was treated and diagnosed my son described it as watching some one in a torture chamber. I honestly felt like a demon had taken over my body and was trying to turn me into something horrible against my will. Its so hard to describe. With all the different lifestyles we all have there is no common link that we did this to ourselves. I did notice that alot of us are from irish or english heritage. A doc told me along time ago that fair skin women are higher risk for osteoporosis. Immune disorders are hereditary and my son already is fighting severe psoriosis. We are warriors and we need to let them see it!! Be strong and fight!!!
Very good points, Waynette. Thanks for the fighting words!!
Jeeezzz Loueeeezzz! Hypochondriacs? Drug-seeking? Yeah, I seek drugs – steroids when things flare. They aren’t exactly Class C narcotics! Pain drugs? Well, they don’t particularly work. I’ve got no patience with docs who buy into these studies! I’m so fortunate to have an Internist AND a Rheumatologist who both believe me when I say I’m in pain, and try to help me. I don’t want narcotics or tranquilizers or any other restricted substance. I want relief from the flares! And, yeah, sometimes I’m discouraged that this is ALL I CAN EXPECT FOR THE REST OF MY LIFE: ONE FLARE AFTER THE OTHER AND ONE LOST JOINT AFTER ANOTHER!! Is that hypochondria? Is that exaggerating pain? Give me a break!How about breaking up those fused joints? How about breaking up my nodules?
Yea, don’t you sometimes want to give them about 5 minutes of what we endure so they will “get it”? I’d be willing to trade if it means I could get a 5 minute break from flare! :O
My dear husband just came up with a good one…..an ‘RA Simulator’. He said he wished their was such a thing for us so that anybody that has anything to do with the medical treatment of an RAer would have to do a round on the simulator as part of their degree.
We can only dream.
I have actually heard that dream before. None of us are cruel enough to invent the simulator, but it would do much good. I once wrote about sharing RA for a day to educate and some folks thought that was too nasty. I thought it was a humanitarian idea. :O Here’s the link.
In 22+ years of RA, I used to use Vicodin just to deal with flares. I didn’t like that opioid painkillers made me tired and always had a rebound effect when they wore off, making me hurt more, but I forced myself to work through it. Three or four years ago I began using them regularly, and added caffeine to offset the fatigue. Last January my pain began to get worse, so I took more painkillers– every four hours instead of six, 15/750 instead of 10/500. Even increased doses didn’t help much, but I figured a little relief was better than none. Then the pain began to get worse and worse and worse as the months dragged on. No relief. My RA seemed out of control. I was incapacitated by pain and almost never left the house, except for the shortest of errands. I really wanted someone to kill me, to put me out of my misery. After almost eight months of agony, one day I was reading about the opiate receptor network (which is why LDN works for some people) and it occurred to me that the painkillers could be reducing the number of opiate receptors in my body, which could explain why the painkillers weren’t working anymore. I stopped practically cold turkey, and in one day my pain lessened by 50 percent, the next by 80 percent. I was amazed. I then found this condition has a name: Opioid-Induced Hyperalgesia.
I found a researcher at Stanford is studying it http://snapl.stanford.edu/personnel/younger.html , and that it has a Wikipedia entry http://en.wikipedia.org/wiki/Opioid-induced_hyperalgesia ,
and that it has been known about for decades. Most doctors and patients, however, have never heard of it.
Please understand: I am not suggesting that this is the cause everyone’s pain. I too find it frustrating that doctors and even friends don’t have a clue about how much RA hurts. I just wanted to share my experience in case any RA Warrior readers have the impression that their Vicodin, Percocet, Lortab etc. is barely even touching their pain. My joints still hurt and life life with RA still sucks, but the pain–caused by the painkillers themselves– is no longer driving me to suicide. I hope this information may help someone.
Wow. Yes, I’ve read about that happening. How brave you were to quit that way.
I’ve never tried any of those drugs & this sure makes it less likely. The pain of RA can make you feel pretty desparate, too. There’s never an end to it in sight like there is with a wound or with childbirth.
Before my RA I had a really high pain threshold and I consider myself to still have a high pain threshold. As most other people have said – I went through my first few hours of childbirth with no medication – Sam was the wrong way up so all the pain was intensified through my back and made me totally unreasonable but I got most of the way! I don’t pander to my pain and I, like all of us, will keep going despite it – How can people demean pain so much – especially when pain is personal. When I was nursing we were taught that ‘Pain is what a person says it is – it is personal’.
What makes me really angry is that pain is subjective, it can’t be seen – what makes my pain any less than anyone else with a long term illness! Going back to one of your previous posts Kelly – I’d like the person who wrote the article to take my RA for 6 months and then see how low their pain threshold is!!!
I hear you Sara. I know from experience that you are right. I went through childbirth also and once I had that “back labor” from a baby who had turned breach. You are completely right – no one should be able to claim they can measure or judge pain. What good is that to do instead of treating it and looking for a cure anyway.
The saddest part is that the patients are counting on these very people to help us.
At least some researchers are trying to find out if there is still pain after the inflammation subsides. See the following abstract:
Characterization of the acute and persistent pain state present in K/BxN serum transfer arthritis
http://www.ncbi.nlm.nih.gov/pubmed/20739123
A patient recently told me that his doctor told him that this topic is a hot one in some doc to doc convos.: pain w/out obvious inflammation.
Although it’s probably more likely bursitis (Weaver’s Bottom or Tailor’s Bottom), here’s another reason why your butt might hurt!
Dystrophic calcinosis in a patient with rheumatoid arthritis
http://www.ncbi.nlm.nih.gov/pubmed/20737189
Oh, I’m sure. The concluding remarks are probably that such patients are PITA’s! On another note, I saw one abstract stating that NSAIDs may actually be causing production of MORE TNF in RAers. Maybe that’s another reason. Can’t forget that some docs just may not be very goog at detecting some swelling, which you’ve mentioned before.
I’ve never heard that about nsaid’s although I have heard they reduce esr w/ longterm use. Docs who can’t detect swelling? yes, well it’s hard to do from 6 feet away isn’t it? several I met like that never actually touched my joints. They imagine that RA pain is like a UFO or something: The will only believe it if they see w/ own eyes. Well, think of tendonitis or migraines or a hundred other illnesses that are treated w/out any visible evidence. Besides, the subtle swelling can be detected usually by a skilled clinician. This one always gets me going – I think it’s one of the keys to the whole problem w/ treating RA.
It is impossible to quantify a threshold of pain unless the subjects are subjected to a uniform painful stimulus. Otherwise, the “study” is just speculation.
I’ve experienced a total of 4 displaced fractures to the second largest bone in my body requiring 6 trips to the operating room for hardware placement, removal, and arthroscopy, not to mention months of PT. I have degenerative arthritis in my right ankle stemming from the first fracture and ORIF to my tibia over 20 years ago. I’ve also endured 5 other fractures (including a rib) over the years. Yet, last year a doctor had the audacity to tell me (the newly diagnosed RA patient) I had a very low threshold for pain when I complained about my joint discomfort and inability to perform daily tasks. I swiftly told him I was no wuss and that my joint pain at it’s worst was equivalent to some of the post operative pain I experienced but there were a few differences. First, I knew my leg would heal and that the pain would slowly decrease. Second, I was given Dilaudid to ease my pain. Third, there was obvious physical evidence of pain (Large screws bolted into bone) so my pain was “believable”.
I’ve found RA to be in some ways more painful because it has almost no rules. It comes anytime, anywhere, and can last days, weeks, or months. On a good day it can be minor a nuisance while on a bad day it can feel like you have been attacked by godzilla. If the pain was temporary or curable, it would be much easier to handle. Doctors often fail to realize that RA is as much of a mental battle as it is physical.
So, my best guess at why researchers have labeled RA sufferers as having a low threshold of pain? People who have endured countless days of crippling pain have probably depleted their mental reserves for dealing with pain. Without breaks or, “a light at the end of the tunnel”, coping with pain can be also be mentally excruciating!
Brenda, thank you so much for your well thought out comments. Your 3 reasons are spot on!
I think you highlight 2 important points: RA pain is often in the range with things such as post-op pain or pain of a broken bone; and 2, that it is different because it is worsening and unending instead of improving. It is also not the same for every patient. For some it goes up and down, but for others it is more constant. I think that makes it more difficult for doctors and researchers and even other patients to comprehend or “believe” in that kind of pain. We all tend to think that others are like us – I know for me it has been a hard lesson.
Are you kidding me? Tell them to watch one of those ‘exorcism’ movies and watch as the finger joints twist and disfigure – tell them that’s what it feels like to us! Shame, Shame
Love that idea, Suzie!
I really liked the last part of the blog when you said:
“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.”
You really hit the nail on the head. RA is like a prison sentence for life…there is no end to the pain. When you are delivering your baby you know that once you get the head out the pain is pretty much over…but with RA there is no head to pop out and no end in sight.
Wow, Ruby.
This research shows that those with RA don’t actually feel all the pain we actually have, unlike those with OA or joint trauma. So, we actually have HIGH thresholds of pain.
http://ard.bmj.com/content/early/2007/02/26/ard.2006.067066.abstract
Conclusions: Parallel to the severity of inflammation, END, ENK in immune cells and their receptors on sensory nerve terminals are more abundant in RA than in JT and OA. These findings are consistent with the notion that, with prolonged and enhanced inflammation, the immune and peripheral nervous systems up-regulate sensory nerves expressing OR and their ligands to counterbalance pain and inflammation.
Thanks for the link, Tanya. I’ll take a look. It seems to support what I’ve seen in real life with many patients although we may handle pain differently.
Still early research but atleast someone is looking into hard science to refute the “low threshold” bull hockey that has been spouted for years.
These must be the same dead beat doctors that told my mother she was fine with a knot on the side of her neck and sent her home when she was eat up with throat cancer !!!! I had two tumors each one of them as big as a grapefruit which equals as big as a basketball !! Dealing with the pain for about as far as they new for 3 to 4 years so i could keep working until i had to have surgery. So you doctors do not need to tell me i cant deal with pain and have a low tolerence to it. Dont judge someone until youve walked in their own shoes for awhile. They are the ones walking around with the prescription pad in their hand to write one out for their collegues when ever they get a little pain. What a waste of money to study something like this when you dont even know how someone gets this RA. Or even know how to really treat it or cure it.
Lisa, I hear you & I’m glad you expressed that here. It is a real problem.
I’m sorry you’ve met some idiot doctors who let you or your family suffer because they won’t listen. Me too. Here’s one example I wrote about – click here.
After a while, it gets to the point where, you know before
you’re going to have a flare up. It is about to happen. Like a plane decending toward ground. There is a succinct set of symptoms that, inevitably means the pain is coming- It always does. The more it happens, the better you get at recognizing these set of signs and symptoms. We’ve been forced to monitor our own bodies for any type of change, be it minimakl or an impending sickness. Even a small cold or simply neglecting personal upkeep. Those things you know you have to do to stay healthy can turn your immune system against you. If the emotional impact of an impending disaster, such as a RA flare, is described as psychologically exacerbating the problem, then I’m guilty. Who wouldn’t be?
Thanks for the colorful description Wesley. I do not have any experience with that since my RA is constant. It’s helpful to hear what it’s like.