Do Rheumatoid Arthritis Patients Have a Low Pain Threshold? | Rheumatoid Arthritis Warrior

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.
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:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

128 thoughts on “Do Rheumatoid Arthritis Patients Have a Low Pain Threshold?

  • February 19, 2010 at 8:00 am
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    Thank your for this very reasoned response. As a newly diagnosed RA sufferer, I am only beginning to discover the level of misunderstanding and dare I say disdain that exists with regard to our condition. Apparently, we have to battle more than just the physical result of this terrible disease.

    Reply
    • February 19, 2010 at 9:14 am
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      Lori,

      Unfortunately, it seems to be the case – a 2-front war.

      Thank you. I felt like it would be perceived as “drama” just to mention my experiences. Anyway, I’ve said it now.

      Reply
  • February 19, 2010 at 9:02 am
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    Kelly,
    Thanks for a much more dignified response than I would have posted. In this past few weeks I have actually encountered some medical professionals that seem not to perscribe to these notions. I had knee surgery at Andrews Sports Medicine Clinic. Each day at therepay I have had the therapists ask me questions about pain level. At first, I tried very hard to distinguish between Ra pain and pain caused from the surgery itself. That wasn’t hard because the surgery pain was nothing compared to RA! However, they were quick to point out to me they didn’t eant me to do any rehab activity that increased my pain no matter what the reason for the pain. My surgeon has been very quick to offer any modality of compfort for the pain that is available to him. Maybe this compassion comes from working with a bunch of professional athletes, etc. but I had to let ya’ll know that it does exist!

    Reply
    • February 19, 2010 at 9:19 am
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      Hi Amy,

      Sorry about your knee. Feel better soon.

      I do hear that about sports medicine and other specialties and illnesses such as cancer or MS. However, it’s not what I hear or see with RA-centered practices. I guess the invisibility of it is too much to overcome for some. Why they would even try to “prove” that our pain is less than we say is beyond contempt.

      Thanks, Amy. I did not “feel” dignified mentioning those personal experiences. But I wanted to convey the truth.

      Reply
  • February 19, 2010 at 11:54 am
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    You’ve hit the nail so hard on the head, Kelly, that its wrapped around the nail!! Thank you for this post. Too many times I’ve been looked at as just the fat woman who would feel tons better if she’d just lose weight. Nevermind the fact that they can’t see the pain I am in and in all reality, they could really care less. People are so self-absorbed and working towards politically correct weight, fitness, eating habits, that they don’t stop to think that there are those of us who would love nothing better than to follow in their footsteps towards being healthy, but are held back by their illnesses and diseases. Sure I try to eat healthy. Sure I try to exercise. Sure I would love to lose this weight. HOWEVER, I would also love to have a pain free day where I feel well enough to do all these things without having to think: what can I eat that won’t take a lot of preparation, where can I walk where I can sit down at a moment’s notice when my back and hips and ankles say NO MORE, where I can pull something out of the closet and be happy to wear it without worrying about whether it will cover this body enough that society has made me feel ashamed to be in…. Sorry for the rant. I’m just over these studies that are a waste (IMHO) of time and money when their resources could be spent finding a cure instead~!

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  • February 19, 2010 at 7:38 pm
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    Amen, Kelly. And thank you for speaking the truth about RA. Praying that our doctors will believe us instead of putting their trust in decades-old (or even yesterday’s) “studies”. After all, we aren’t studying RA. We are living with it.

    Reply
  • February 19, 2010 at 9:10 pm
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    All Hail QUEEN KELLY! I went to a new pain doc yesterday and he is AMAZING! He believed me when I said that there is no “scale” to measure my RA pain and that my back pain is from RA he actually agreed and said that my neck is most likely getting worse b/c of RA! He is going to get me into a lite Aqua P.T. at UNLV in April when my eye surgeon gives the ok, he gave me a new back brace, that he invented, it’s lightweight and comfortable and he knows the new Rheumy I’ll be seeing and says he’s a really great Doc! We discussed the “pain threshold” garbage at length and he’s with us wanting to know WHY $$ is not spent to find a CURE or Meds that aren’t POISON! :rose:

    Reply
    • February 20, 2010 at 8:55 am
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      Oh, Alice. I pray the pain mgmt doctor I see next month is as wonderful as yours sounds!! It must be such a relief to have someone believe you!!

      Reply
  • February 19, 2010 at 9:26 pm
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    Kelly –

    I know without a DOUBT that RA has done nothing but INCREASE my pain threshhold. Example number 1: each time I go in for shots of any kind, even those long ones into my hip joints, the docs and nurses all shake their heads and say, “God you’re good girl. You didn’t even flinch.”

    I know FOR A FACT that PRE-RA I would’ve been screaming. Those shots are NOTHING compared to the pain I live EVERY DAY!!!

    DUH! These are Drs. witnessing these observations!

    Sometimes I just don’t get the stubborness surrounding this disease…and sometimes, it is just too much to take on top of feeling so awful all the time!

    – RA SB

    Reply
  • February 19, 2010 at 10:38 pm
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    Kelly you have perfect timing with this subject. I had an appointment with my Rheumy today. After 3 years of meds. for RA, it has been determined that I may not have RA. Why?, Because in the opinion of the doctor my pain is not in line with the swelling and warmth in my joints!! The Rhuemy can not understand how my pain level can be where it is and not be the Good Year Blimp in all my joints. Even when I told this doctor I have had several broken bones and several bone surgeries and never had swelling with any of them. Now mind you on MRI the total joint destruction is very visible and undeniable. Since I do not fit the picture of RA for this doctor I must not have it. Then goes on to say that I will always need a Rheumy in my life!! I will begin my search for a new doctor on Monday and get a second opinion. I apologize for airing this on your blog. I feel that I can trust everyone here and needed to let someone know as I am scared, frustrated, angry, and overwhelmed at all of this. Please take care and continue your very needed blog. Hugs, Jamie.

    Reply
    • February 19, 2010 at 11:56 pm
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      Jamie,

      I was out all day & I’m behind in lots of things. Actually, it’s late here & I’m falling asleep, but I have to answer you first before any of that –

      1st- I’m sorry about your appt. I call that “appointment disappointment.”

      2nd – You have been a friend & support for several months as this blog has grown. Of course, I’ll do anything I can to help you find answers need. I have wanted to write about this “swelling” thing for a long time & I’ll work hard to get something done soon.

      3rd – There is some evidence out there on the “swelling” issue although it is hard to find. When I was looking for a new doc, I also saw a doctor who claimed that I must not have RA pain since visible external swelling is minimal. My current doctor not only disagrees about that, but also detects swelling by pressing firmly inside of joints and noting the extra “squishiness”/padding that is there. It was a great relief to be validated about that even though the pain is the same.

      4th – finally tonight I want to tell you that I have found a large number of RA patients who tell the very same story. This disease is heterogeneous & this seems to be one of the “types” – During certain times, the damage & pain progress while the medicine takes the external swelling down. The swelling is not what causes all pain. The damage process itself must cause pain because there are lots of people like you my dear friend.

      Reply
  • February 20, 2010 at 12:21 am
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    Kelly thank you for taking the time to answer so quickly. Your words are comforting. It is an invaluable piece of info. to know that I am not alone with this weird type of RA. Thought maybe the pros were right and it is all in my mind. Thank you for being here my dear friend. Gotta go, tears starting to roll.

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  • February 20, 2010 at 1:41 am
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    Jamie, I’m one of those whose inflammation is either not there now or not visible, blood test numbers all in normal range now, but STILL have REAL (not overblown or hysterical!) physical pain in multiple joints. I haven’t had my rheumy doc long enough to know what the response to this will be, and I’ve been sweating it out before each appointment. Hope it helps you to know you’re not the only one in pain without outward swelling. My thoughts and prayers are with you.

    Reply
  • February 20, 2010 at 4:28 am
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    Geesh –

    It is the old, “Your pain levels are too high to indicate rheumatoid arthritis routine.”

    I’ve been right where you are, told all the time by my rheumy that my pain seems more in line with fibro (in addition to RA), but all the pain docs agree: “RA hurts like this, especially if it is not completely under control, which it is not if it hurts this much.”

    Now I am on the other end. My pain dr. is great about providing pain relief, but I can’t help feeling like they should be doing more to fix teh disease, since as you mentioned, the x-rays keep showing the evidence.

    My hubby says just to realax as I am one of the lucky ones who is at least having my pain treated, but I don’t know. What do you guys think?

    And its not as if my RA isn’t being treated. It just never has responded well to the biolgoics and mtx. It makes me thing, “Why don’t we try Arava instead?” But that is just me. Perhaps there is an answer as to why they dont try it.

    But my point is even once they do believe you and treat the pain, you still ende up feeling kinda slighted. It is just a horrible disease with not enough answers, not enough options and not enough support!

    – RA SB

    P.S. Sorry about the typos. New computer is on its way…this one has too many sticking keys.

    Reply
    • February 20, 2010 at 8:17 am
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      What do I think?

      I think that nagging logic in your mind is correct.

      I think that science doesn’t exactly know yet how to control RA that does not respond to typical treatment.

      I think our disease is too serious & our lives are already too short to waste time with docs who need to be “convinced” of our pain or disease state. I am so relieved to have a rheumy now who sees his/her job as helping me find a way to treat RA, not wasting 10 seconds trying to talk me out of it because it did not match some wrong textbook description of typical. This is a professional who seems to have no time for that bs.

      Hope that helps you or someone.

      Reply
  • February 20, 2010 at 8:29 am
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    I’m one of those patients that generally do not have feverish joints, often times don’t have much swelling, my SED rates (inflammation markers) are normal – but, my hands are getting more and more deformed by the month. My Rheumy has been very aggressive in treating my RA b/c he can see the changes in my hands too. He has been very kind and understanding. He said that it makes my RA so hard to treat b/c of this. I pray we find answers soon. Some days, my pain threshold is maxed out.

    Reply
  • February 20, 2010 at 8:58 am
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    Thanks for writing this blogpost, Kelly. I appreciate the comments, too. I have had so many different experiences that your blog post makes sense, and the comments about the doctors also make sense. You have to do what you feel is right for you; don’t give up to the doc who dismisses you. RA progresses, so… anyway, loved this blog!

    Reply
  • February 20, 2010 at 9:24 am
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    Kelly, thank you for the post. Totally agree that RA raises the pain threshold. My onset was a sharp pain in the arm. I thought I was having a heart attack and went to the ER. Now, when I feel that pain, I know it’s RA and just “deal” with it. To have RA is to live with chronic pain which is, in my opinion, more debilitating than acute pain.

    Reply
    • February 20, 2010 at 2:59 pm
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      Mostly, I just mentally disconnect from my body so I am less aware of it like I did during childbirth. We just get really good at that skill.

      Reply
  • February 20, 2010 at 10:00 am
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    Kelly,

    Thanks for your great website. I posted the following on your Facebook page, but thought I’d share it here, too, so all your readers can see some additional honest comparisons of pain.

    Three years ago, I received my RA diagnosis. Throughout my life, I’ve been an active outdoor recreationist, and continue to enjoy outdoor adventures. But I do so now with more pain – and that’s saying something!

    Prior to my full-onset RA, I experienced a few significant non-RA pain episodes so I think I can honestly compare levels of pain. I severed a finger when my hand got caught in a chain-drive on a lawn mower (very painful!).

    I crashed my bicycle when I was 25, tumbled head over heels down an embankment, put my leg through the front wheel, and drove a broken spoke through my calf muscle and into my tibia — then had to pull that out myself when no help came after nearly an hour. (EXTREMELY painful!!!).

    I literally pulverized my right heel when I crashed my paraglider into a cliff — my heel bone was smashed into a pile of bone fragments (VERY severe pain!!!).

    Today, a bad RA episode easily eclipses the pain in those events. So researchers, please DON’T tell me I have a low pain threshold!!!

    Reply
    • February 20, 2010 at 10:56 am
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      Dan! we need to put that on a t-shirt!!! Wow. I saw your blog – great.

      Reply
  • February 20, 2010 at 11:15 am
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    Doreen; I will be praying for you! I know that it was GOD who led me to this awesome doc so I’ll pray HE does for you as well my friend!

    Reply
  • February 20, 2010 at 2:42 pm
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    Boy does this anger me. I had a quack of a rhuemy for years telling me that if he couldn’t see any swelling then it wasn’t RA symptoms. This article reminds me of him. Finally found a dr who knows pain can be invisible to everyone but the person feeling it. Nobody can describe RA pain except people with RA! Stop trying to decide if the pain is “that bad” and just work on a cure! Irritating that a study was done on how bad the pain was compared to actual study of the cause/cure of the disease.

    Reply
    • February 20, 2010 at 2:57 pm
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      Glad you found a good doc. How many are like you & Jamie & me & many more I’ve met who had a doc like that try to talk them out of pain because of this “swelling” thing?

      It is even more irritating that it was not one study, but dozens of studies over 40 years. Now, it is apparently accepted as “fact.” We’ll have to start setting the record straight. :shout:

      Reply
  • February 20, 2010 at 7:34 pm
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    Kelly, God bless you for this site and blog. I just found it today, I have had RA since 1995. I can say that a Physical Rehab doc back in 1997 told me that anyone with RA does have a higher pain thresold. This past week has been horrible with hip pain that came out of no where, I will call my rhemy on Monday, he is very good. I am currently on predisone, humira and darvocet. I was on meth until I ended up with low K and fluid on the lungs. Keep uip the gret work, I will be back daily, since this is a Godsend.

    Reply
  • February 21, 2010 at 3:03 am
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    Pain threshold? High or low with RA? From my experience, my threshold must be pretty high when it comes to major pain. When I went into labor with my son, I only felt the hard labor which lasted about 90 minutes. The doctor figured that I never felt the earlier mild contractions.

    I had an emergency appendectomy and didn’t need pain meds when I got to my room. I just wanted to be left alone and let go home.

    There are often times I don’t realize the pain my body is enduring until I’m sick to my stomach! How’s that for pain tolerance or threshold?

    I’ve seen the same rheumy for about 20 years now. She doesn’t have RA but understands the disease better than anyone else I know that doesn’t have it! She checks hand strength and joints for inflammation by examining not only for heat but “squishiness.”

    As a diagnosed RA patient for about 25 years and having symptoms since the onset of puberty 35 years ago, yeah, I’d have to say that RA patients tend to develop a higher tolerance, threrefore a higher pain threshold than the “average” person out there.

    – Chris

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  • February 21, 2010 at 9:53 am
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    This made me angry too. I think we all have high pain tolerance. I just went in to my rheumy last week. About 3 weeks earlier than my appointment because the pain got to a point where I couldn’t even breathe. Usually I can deal with it and I told her, when I call you it has to be bad because I have a high tolerance to pain. She agreed with me. She said she tells spouses and families of RAr’s, to help them understand the pain they deal with, is that it feels like your bones are broken. I thought that wasn’t a bad comparison. Although from reading these comments, it seems most have been able to deal with broken bone pain and child birth easier. I think maybe because that pain can be controlled and eventually goes away. RA pain is just always there, even with pain meds. I might get a couple hours of it calming down, but not going away. And, like last week, it was so bad for so long, I couldn’t deal with it anymore. Going to start biologics soon so hopefully it will help more.

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  • February 21, 2010 at 12:35 pm
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    What amazes me is that even if there is no swelling, there is still bone erosion that happens and bone-on-bone causes pain as bad of, if not worse sometimes, as swelling & inflammatory pain. Sometimes there is nothing else in a joint to be come inflamed and you are left with the agonizing pain that comes with bone rubbing on bone. So, if that catagorizes me as a hypocondriac or drama queen with my pain, so be it. I’m not going to apologize for my experience. It’s like opinions, everyone has them, not everyone has the same(i.e. dr’s).

    Reply
    • February 21, 2010 at 3:23 pm
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      I meant to end my first sentence with “…and that drs never take that into account, they try to tell you it isn’t that bad.”. Sorry for the disjointed read. 🙂

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    • February 26, 2010 at 9:54 pm
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      You are right. May we keep that in mind. Why do we apologize when we are in pain?

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  • March 1, 2010 at 1:08 pm
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    I’ve only had my “sero negative inflammatory polyarthritis” symptoms for 3 months and I’m starting DMARDS in a few weeks.

    I’ve not had any severe pain, I would say it’s all been mild. The symtoms started in my hand but now I have ‘twinges’ in my feet knees shoulders and maybe a hip. A lot of it feels like an over-exercised muscle pain or a slight ache. It comes and goes but is always in the background in some joints.

    My fingers have swollen intermittedly on my right hand but strangely they weren’t sore. Not swollen at the moment but I have a bit of stiffness for 5 minutes in the morning.

    This thread terrifies me of what’s to come. 🙁

    Ive never broken a bone or anything, and I’m 24 and always been healthy so i’ve never actually experienced much pain at all. I’m horribly scared of the forthcoming pain, I dont think it’ll handle it very well.

    I dont know how you all do it, you all sound so brave to me. I think the doctors who dismiss your pain are fools and a disgrace to the profession.

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    • March 1, 2010 at 1:34 pm
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      Jenny,
      I’m sorry to hear of your diagnosis. Hopefully, you will begin treatment soon enough that you will never know the severe symptoms described here.

      I’m sorry if we scared you. My symptoms were like you have for many years. I did not get a diagnosis or treatment until it was extreme. The theory is that earlier treatment could make for a less severe disease course.

      So many people I talk to say that they will not take dmards when it’s “only” that mild. But, I’ve been thinking that if I could turn back the clock, I would have taken them if I had been offered. Maybe that will help encourage you some.

      Reply
    • February 10, 2013 at 8:23 am
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      Hi Jenny,
      Two years ago I was diagnosed with sero-negative RA. My symptoms were severe at that time and the pain was unbearable. My treatments started with Celebrex, Methotrexate and Prednisone, and now I am on Naproxen, Methotrexate and Arava. Fortunately for me, my pain is pretty much controlled except if I try to do something like quickly run up a few stairs. I am soon reminded of the fact that my body is not normal. Of course I worry about the long term side effects of the drugs, but I feel the freedom I have obtained from my treatments makes it worthwhile. You will find Kelly’s website and blog to be a wealth of information and support as there are many people who share their experiences here, and yes they are brave!
      Jane

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  • March 1, 2010 at 1:57 pm
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    Hey Kelly,

    Don’t apologise for the thread, I love your site. It’s best to know what you’re fighting! But it naturally upsets me to read some stuff, people shouldn’t have to suffer like this.

    I’m actually looking forward to starting the DMARDs. I know there might be side effects but the disease itself scares me more.

    I guess time will tell. UGH! What rotten luck.
    Keep up the good work on the site 🙂

    Reply
  • March 16, 2010 at 8:26 pm
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    Kelly,

    I have recently been diagnosed by my new Dr with suspected rheumatoid arthritis and will be seeing a rheumatologist next week. I’m totally gobsmacked that anyone could dare to quantify pain levels. We all have our own limits and each time something new comes along to challenge us (as often does with this disease) it’s like being hit by a freight train until we eventually absorb it into the never ending pain-sponge which is our bodies. Then we become so used to it, it becomes much harder to describe anyway! I have also had the appointment disappointment and been told that it’s all down to my “perception” of pain and, “Well, if you wake up expecting to be in pain, then you probably will be..”!! It is so frustrating.

    Thank you so much for your honesty and openness, you are bringing together so many people, and showing all of us that although we may feel it sometimes, we’re never truly alone.

    I would also like to add my name to the list of peeps who has all the pain with minimal swelling – I’m more of a “sausage fingers and toes” kinda gal 🙂 But the pain and stiffness affects me all over – and it does……..because I said so! lol!

    Thanks again, Kelly.

    Reply
    • March 17, 2010 at 12:44 am
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      So very well described.
      I agree it is ridiculous that they can dismiss pain in this way – whether it is in a study or to our faces – it is not practicing medicine. I don’t know what I’d call it.

      Imagine if you called a house painter and asked for an estimate & he said, “Your house is fine. It likes being yellow. It does not need to be changed.” And then he billed you. I’m up late with a sick boy – tired & silly. :chic:

      Reply
  • April 2, 2010 at 3:42 pm
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    Once again I say THANK YOU SO VERY MUCH for this website – I have researched the disease over and over on so many sites before and always came away with more frustrated than when I started reading them.

    Yes the studies anger me greatly and that was my initial reaction. As I lay here on my couch on a GORGEOUS spring day thinking of at all the things that I once could do on days like this, I can’t help but also feel a huge sense of sadness. For people who have not found this site, for people who are not blessed enough to have someone in their life to understand that this is NOT in their heads and that they are not just ‘searching for pain meds’. For people who are already depressed, alone and in need of validation, this kind of thing can be so dangerous in my opinion.

    How much damage are studies like these doing to these people? Most of us grew up with the idea that ‘doctors’ know what they are talking about and what they say MUST be true. How many people with RA who are already so sad and despondent read something like this study and get further down because of the ignorance? The thing I come away with after reading these comments is that each and every one of us seem to be highly intelligent, well read and well spoken. Why is our input ignored? Why won’t researches just LISTEN to the people who KNOW.

    I must say I was not one who did natural childbirth. I was very young when my boys were born and had no idea what I could endure. I had epi’s with both deliveries. That being said – after having RA for 2 years – I know that it would NOW be a breeze to do natural chilbirth. I have had broken bones, surgeries, sprained ankles, the list goes on and on. Nothing I have had before in my life compares to the pain of RA.

    Today is an FMLA day from work because it was too painful to get dressed and the thought of even trying was so exhausting. Do these people think we HONESTLY are just ‘wimps’? How can they not know that laying here in my PJ’s at noon trying to keep it together is NOT what I would choose over being outside in my garden feeling the warming sun and the dirt on my hands, that I would even rather be at work?

    Sometimes as much as I am in pain (and yes as most of the above – that is every single day) the sadness is many times even worse. The sadness of what I once could do, the sadness of my body not being able to do what my brain says I want to do is sometimes so overwhelming that I just want to cry, but I don’t even have the energy to do that much. Sadness is the feeling that those studies gives me even more than anger. It truly scares me thinking of the damage these ‘findings’ can do.

    So far I have been able to stay positive most days. I do my best each and every day to thank My God for the blessings of a wonderful patient husband, a good Rheumatologist, and a wonderful family. I have added to the list of blessings to be thankful for – this website and you Kelly for you have helped me and so many others understand that we are not alone, and we are certainly not wimps.

    Have a wonderful weekend and to White Tiger – you also have me as a friend – no one should have to go through this alone. We understand and for some reason us ‘wimps” (sarcasm font) are great listeners.

    Reply
    • April 2, 2010 at 11:03 pm
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      So well said, Pamela. It is obvious that you are bright and capable and articulate; your testimony should be worthy of heeding.

      I have similar questions to you. I’ve few answers so far. You ask: “Why is our input ignored?” and “do they just think we are wimps?”

      1st – I was shocked to see how (chronic?) pain is viewed to begin with. Look at the previous post to this one. It seems they think they can measure it “objectively” like we measure rainfal in a tuna can.
      2nd – It shocked me to learn that they talk about the “psych” effects of RA and a “rheumatoid” personality, Pamela. I do have “rebuttals;” however, at this point, I’m still attempting to learn more about why and how they support this.

      Hopefully, intelligent women like you and I will change this for future generations. I can just imagine how irritating that might sound to a doctor who might be reading this. :chic:

      Reply
  • April 12, 2010 at 10:45 am
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    My Rheumy tried to convince me that I had Hep C instead of RA b/c I had no swelling but said I’d rather be on a morphine drip than sitting there. He went over note from last Hockey Puck and saw that he said I had high amounts of swelling and nodules would just pop up anywhere, I showed him my right elbow,HUGE nodule, to which he said that’s RA . My X-Rays show no damage so he said that made him doubtful I had RA but he looked at my hands and said they were “classic” RA hands even w/o swelling. My knees and toes are swollen but I don’t see Rheumy until next month after I have neck surgery. Rock and a hard place all the time! :rain: LOL

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  • May 7, 2010 at 9:18 am
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    Battling with SSi currently they tell me im fine and can work.. I wonder if they see me trying to make it to the bathroom each day.. i wonder if they see me and my plastic cups and plates cause i cannot wash glass and or hold on to it and not break it.. i wonder if they actually care? so many people just think we should adapt and move on, i cant make a fist today i lay my hands around my laptop at the warm spots in hopes it warms them enough to move each morning. i pray my puppy lay on my thigh bones when i sit so she can warm me as there isnt a big enough heating pad to do so. rediculous im ever so mad when i read the articals such as this..the 100 mg of morphine i take twice a day doesnt touch my pain , i had two ten pound children BOTH born face up with no pain meds…. I KNOW pain

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  • May 7, 2010 at 9:28 am
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    My goodness girl, you did a wonderful job with that! I feel that I will be silent since I feel like cursing…and I’m a good girl so I will let your words speak for me….and thank you for that! BIG HUGS! Thanks for being a voice for us. I feel guilty that as a Registered Nurse I am not using my voice right now …and I will…as soon as I can get back up on my feet! You inspire me to do so.

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  • May 7, 2010 at 10:39 am
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    Kelly – I know that I have a higher pain threshold than most people because of the pain that I walk around with daily. I try not to complain about it because I don’t like people asking me 45 questions about what’s wrong and telling me about their ailments. I don’t care to hear about their pain, so I don’t tell about mine.

    I honestly feel that if other people had to tolerate the pain we RA patients tolerate, they would just take to their beds. I am offended that researches think we have a lower pain threshold.

    Yes – It hurts me a LOT more than it does a non-RA sufferer when I stub my toe. It’s not because my pain threshold is lower – it’s because I have arthritic toes that don’t like to bend and give when they encounter whatever it is I have accidentally run into.

    It’s the same way that one person can step on a rock and twist his or her ankle and be a little gimpy for a couple days – and if I do the same thing, I have to get a specially formed plastic brace and walk on a cane for six months. It’s not because my pain tolerance is lower that it takes me longer to heal, it’s because my joints are weaker.

    These researchers need to stick it where the sun don’t shine.

    Thanks for letting me rant!

    Keep up the good work!

    Beth

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  • May 7, 2010 at 10:49 am
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    I think pain is incredibly hard to calibrate. Until the past 5 years (since I was diagnosed with RA), I could push my body to do incredible things. I could work through sore muscles, aches and pains all day long everyday. Sure there was pain, but it was pain that could be ignored and pushed through. I knew it wasn’t going to last. For me, the pain from RA can be insidious. If I take each joint separately, it isn’t the worst pain I have felt in that joint … but it goes on and on across large swaths of my body. It can lay there like a pall hanging over everything I try to do. Okay, the pain in my foot isn’t horrible … but it is there everyday along with pains everywhere else. If it was just the foot, I know I could ignore and move on. I guess my rambling is that it isn’t always the absolute level of pain but maybe the sum total of all the pain taken cumulatively overtime.

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    • May 7, 2010 at 4:32 pm
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      Peter, that is a good point and would be difficult to use the usual pain scale to measure.

      Reply
  • May 7, 2010 at 11:48 am
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    This is funny because just yesterday when I was having severe pain in my wrists,elbows,hands,knees, ankles and feet… My thoughts kept taking me back to the statement of RA’ers have a lower pain threshold, so I thought “I guess this wouldn’t even phase the “normal person” But then, all I could think of was: Does it really matter if our pain threshold is high or low? The pain we feel is real, it hurts some days more than others, it is disabling, disfiguring and unbearable at time, so who cares about threshold? I have enough going on without feeling like a big baby…
    Kelly: Thank you for everything you do here!!! I appreciate reading here daily. they get me through each day. I feel like I am alone with this most days, so Thank you again so much!

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    • May 7, 2010 at 4:35 pm
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      Thank you, Donna, for taking time to say so. I agree “who cares?” – what they need to study is how to fight RA.

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  • May 7, 2010 at 12:06 pm
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    Loved your response!!! Pain Management??!??!!! What is Pain management??? Its been 8 years since I started to notice horrible pains in various joints and 8 long years NEVER once prescribed anything for the pain. My RA hit fast I started a new job Tuesday and by Friday after work I was unable to lift my arm above my waste without crying horribly. There is no doubt in my mind that I do understand the difference between pain – when you wake up from sinus surgery and they ask how your nose is and your crying hysterically because your neck hurts so bad you cannot even think of the nostrils they just spent hours on — well you can tell the difference. When it takes you 20 minutes to get out of bed only to feel like your toes are going to explode off and you have to grab the wall and hang on so that you don’t pass out from the pain – yes I can understand pain. Not being able to physically brush your own hair or walk up the stairs to the bathroom so you try to crawl and realize that your arms are no help — yes we all understand pain. Maybe once we get to actually go on the newer better drugs we might forget how really and truly bad it was in the beginning, but it took me 3 long years to go through the hoops insurance and doctors put you through. I have been on Humira for 5 years now and if my house was on fire I can honestly say I could hop out of bed and rush out, but there isn’t a day that I do not have pain. I switched jobs and Humira wasn’t on the formulary list so I tried Enbrel — I had a complete failure and it was like I was getting sick all over again. If anything I have to tell myself that other people can feel pain too and even if it cannot possibly relate to all the pain we suffer I force myself to show concern and worry and try my hardest not to make them feel like they should just shut up and take it like we all do! I don’t know about you survivors, but I worry that I will ignore pain thinking it must be a joint and it could be something more serious. Stay strong and keep your heads up. We have RA, but we cannot let it beat us!!! Thanks again for posting this and your awesome response!

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    • May 7, 2010 at 4:39 pm
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      Hi Kari, I was upset to hear about what happened to you. Remissions of any sort are fragile & many patients spend years trying to find a drug that responds to their particular RA. That is sad that the insurance company ( and dr?) did not realize that switching from something that is working would be a bad bad idea. That was just ignorance.

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      • May 7, 2010 at 9:53 pm
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        Thanks Kelly! I have been back on Humira ever since and doing pretty good. We all have good and bad days, but life is a lot better with Humira. I just wish Vioxx was still around!!!

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  • May 7, 2010 at 10:23 pm
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    I cannot believe there are 50 reponses to this article without using a cuss word.(Kelly you use such restraint) There is not a single person that can judge the pain that the next person feels. I wear my RA as a badge of honor. What the research doesn’t say is that after so long your pain meds don’t always work and there are so many side effects(many listed above my favorite is kidney stones)that add to the pain and tireness. Everyone stay strong! Someday there will be an article that doesn’t judge that tells of a cure.

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  • May 10, 2010 at 6:49 pm
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    Kelly, I just finished reading this post again and all the replies. Makes me feel stronger and not alone. It made me think about swelling and how your doctor detects swelling when it’s not so visible to the eye. After I was diagnosed I went to hospital records and requested a copy of my MRI/shoulder with contrast. I wanted to see if it would reveal signs of RA that my orthopedic surgeon did not pick up on. I had no external visible swelling in my shoulder yet the MRI report proved I did. This is what it said. Joints:Irregularity of the synovium within the joint may suggest chronic synovitis. the joint space is capacious, easily containing 15 cc of fluid…

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    • May 10, 2010 at 7:25 pm
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      Ronda, OMGoshing out LOUD here. Reading our own records makes a big difference, huh? THAT is empowering. I have not met many patients who I think are exaggerating so that they can be treated for RA that does not exist. Why do docs seem to think there are so many of them? You don’t have to answer that – it was rhetorical anyway.

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  • May 22, 2010 at 7:25 pm
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    Dear Kelly,
    Thank you once again for your wise words! Each one of us experiences pain in her/his own way. It is up to no one to be judge and jury over MY pain. I have been very lucky to have a supportive husband, great friends, wonderful co-workers and doctors through this new journey. No one has doubted me when I say I hurt. The tests have also showed very high inflammation. You saw my meds list earlier, one pharmasist who reviewed my meds for interactions told me I must have a severe case of RA. It is what it is. God, family, friends and the medical professionals will help me. This web site will support me and help me on this journey. Thank you again, all of you, especially Kelly.

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    • May 22, 2010 at 8:10 pm
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      Lynn,
      You are so right – it’s sounds so simple, doesn’t it. I don’t know why there is so much doubt about RA pain, but it probably is connected to the fact that we are so different. I just read a comment in which a woman was terribly upset because her husband does not believe in her pain. What a shame that people have that battle on top of RA.

      Glad to hear from you. :-))

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  • June 3, 2010 at 1:47 pm
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    Thank you so much for putting this together! I am a 29 year old mother of 4 and was formally diagnosed with RA less than a year ago. It took many different doctors 2 years to figure out why I was having so much pain. I was told that many different treatments, including brain surgery, would make the pain stop. Nothing worked and finally my Neurologist decided to do an MRI on my hand and a blood panel to test for RA. Since my diagnosis I have been to 2 different Rheumatologists but because I did not have major medical insurance (because of the brain surgery I cannot get coverage) they basically said they cannot help me anymore. I am currently not on any RA medications and the pain has effected me greatly. I try to be positive and even pretend I don’t hurt but it doesn’t help most of the time. Nobody understands the amount of constant pain I am
    in! It has caused problems in many of my relationships with family and friends and sometimes even with my husband. I have gotten to a point now that when anyone asks how I am feeling I tell them I am feeling fine. I am so tired of the lectures and the constant criticism. I have had people tell me I am making the pain up, I am going crazy, I am worthless because of my “fake” pain. Reading
    your article really helped to understand that I am not alone and I am definately not crazy! Thank you so much helping lift my spirits.

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    • June 3, 2010 at 2:18 pm
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      Tasha, I’m glad you found this page too! Have you tried to get into any of the programs with the drug companies for people w/out insurance? I know each Biologic company has a program. Are you unable to take methotrexate? That is very inexpensive – I know because I have paid for it out of pocket at times. I have also been uninsured at times and found that a university hospital can be a lifesaver. They usually have a sliding fee scale for the uninsured and great doctors. As far as the pain – I’m mostly convinced that only someone else with RA can know how bad RA pain can be. Maybe you can email this page to your husband or whoever if they will read it. But honestly – I have the same problem – and most of the time I answer “fine” because I don’t want to see “the look” or hear dumb explanation of why I should be better. How old are your four? I have 5. 😀

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  • June 14, 2010 at 7:49 am
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    Thank you so much for your advocacy on the part of all of us suffering with RA. Im not sure there is a one of us that could say what we are all thinking and feeling as intelligently or eloquently as you have. My blog would just be filled with expletives!!! *#@*#@^#**!! LoL!! While these studies make me rage, I love reading it when someone puts it to them on all our behalf!! Thank you!! I enjoy following you on twitter and your site. Keep up the amazing work!

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    • June 14, 2010 at 8:55 am
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      Thank you Kimberly. You’re right that would be easier and it’s tempting some days!
      Say hi on Twitter 😀

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  • June 24, 2010 at 1:40 pm
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    Thanks for taking on this most frustrating aspect of RA.

    The following is to relate a story about my pain tolerance not for sympathy. About 15 years ago, I had to have my gall bladder removed, it was so infected that gangrene had set in. It was more painful than anything I’ve gone through before or since. The emergency room doc, couldn’t believe I had endured it that long without anything stronger than Malox. I know my pain spectrum.

    However, I find my RA pain, while less acute, more debilitating. It is systemic, chronic and unpredictable. It saps me physically, mentally and emotionally. So when someone tells me that I need to be tougher,I get away from that person quickly. After 15 years my wife has figured out that it is real. My Rheumatologist is sympathetic but I am not sure that he gets it.

    Thanks again for taking this on!

    Bill

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    • June 24, 2010 at 3:55 pm
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      Thanks, Bill. I’m glad you wife is getting it. I think helping doctors get it may be one of the jobs of our generation. If the public & docs could catch on, maybe we could make more progress.

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  • August 22, 2010 at 6:16 pm
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    I’m so glad you commented on being able to compare CHILDBIRTH and RA Pain!!! That was one of the first things I thought about when reading the post on RA pain! I too had 5 children the last of which ended up an emergency C-section! And I too have had nurses as well as my DR comment on how well I was handling NATURAL childbirth!(with my earlier births) I KNOW I’ve always had a HIGH pain threshold, even with RA! Some days the pain/flares are moderate, and others it is EXTREME and UNBEARABLE!
    :pissedoff:

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    • August 22, 2010 at 6:28 pm
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      It’s so funny – they tell you that you’ll forget how bad childbirth pain is once you have the baby. I never did. The next day, i’d say, “I rememeber.” Then, when I’d be pregnant again, I’d dread it whenever I thought of it. The first pregnancy was a bit happier because I had no idea what I was in for. LOL. For me the 1-10 scale (which like most RA’ers, I despise) ends with a 10 at childbirth (& the time my back was out with slipped disc & I couldn’t walk or move a toe for weeks). Do you think childbirth is that 10?

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      • August 22, 2010 at 7:35 pm
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        Kelly,
        Yes, I’d have to agree there! It simply is disheartening to read these so called study’s were there they are OBVIOUSLY looking to reduce RA to some hypochondriac, mental disorder!
        I have an almost 2 year old and since I stopped breast feeding I have had flare on top of flare! Some flares I call minimal, I can still ‘work’ through the swelling and pain, I can change clothes and diapers I can get down on the floor and play cars or blocks with him and not have the pain sitting in the back of my mind! Other days like mid last week the back of my NECK was swollen and irritated. I couldn’t turn my head in either direction without tears welling up in my eyes, I couldn’t sleep I couldn’t MOVE without the pain shooting into my skull and down my spine! That pain was a 10! I went to the ER, had x-rays and found I have old and new damage to the disks in my neck! Now that my neck is feeling ALMOST normal…. yesterday and today my right knee is swollen, hot and EVERY time I BEND it feels as if someone is stabbing through it from above my knee cap to the back of my leg! My little one was sitting on my lap while we were watching a movie and he moved his little feet and legs to prop them on that knee and it made me yelp in pain, brought tears to my eyes, not only because it HURT TREMENDOUSLY but because I felt horrible saying “NO, baby, that hurts mommy!”
        According to those studies, I’m simply making a mountain out of a mole hill! And I rather be held up in my house on a BEAUTIFUL weekend such as this one, in my house, limping around and feeling like a failure as a mother because I SHOULD be able to keep up with a toddler!
        Believe me, I would rather be the mom I was BEFORE RA, the mom that rode bikes, played football, tag and climbed trees with my older kids…. I feel like I’m short changing my little man…. but I guess it’s all in my head, let those MORONS tell it, with their studies and all!

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  • October 9, 2010 at 12:34 am
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    OMG!! This is unbelievable. The other day I heard my husband saying that I had a Low Pain Threshold, because he read so… I had to tell him EXCUSE ME !!!! IT IS EXACTLY THE OPPOSITE WAY!!! Precisely because I’m so used to be in pain, after almost 24 years, I CAN disregard the lowest and middle pains and just KEEP GOING and only let the high pains stop me. And you do just the same with your back (he has a bad back). He had never said something like that again. :0)

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    • October 9, 2010 at 12:40 am
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      Nancy, Do you think he gets it? Maybe – can you email this post to him with the link below it? It totally blew me away last year when I learned how many people believe in this fallacy.

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  • November 29, 2010 at 1:49 pm
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    NO, we DON’T have a low pain threshold. We have a high level of pain.

    Cheerio!
    Elizabeth

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  • December 28, 2010 at 4:29 am
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    Hi all,

    I have chronic juvenile RA so I had contracted the virus when I was 12. Managed to get to 33 years old before it blew up fully. I’d just had my first baby by C/Section and according to the maternity nurses, I have a very high pain threshold, and yet I can readily relate to all you comments about the severity of pain associated with RA. It is overwhelming some days, not as unbearable on others. Does anyone else feel more pain during humid weather? I’m in Australia and humidity here is very painful for me.

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    • January 4, 2011 at 10:29 pm
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      Liberty,

      A lot of people complain about weather affecting RA pain levels. It is an individual thing, but changes in barometric pressure seems to be the trigger for many. For me, it is always the same, but how it feels to you is what matters.

      Reply
  • March 10, 2011 at 2:59 pm
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    I recently had a laproscopy, and when I went in to my post-op doc visit, she couldn’t believe that I hadn’t asked for a hysterectomy YEARS ago due to all of the damage and problems that she found. My periods were finally painful enough for me to ask for a more thorough exploration of the problem just this year. Why not all the other years, if I have a lower pain threshold?

    But I do have what I call “The Princess and the Pea Thing.” Tiny things that no one else would notice can hurt me pretty terribly. A wrinkle in the sheet under my knee when I’m sleeping can wake me up with horrible pain, for example.

    I have had doctors treat me as if I’m a “drug seeker,” though, because “It can’t be that bad.” Wasn’t even asking for narcotics, don’t like them because they give me horrible nightmares, but because they couldn’t actually SEE the pain I was telling them about, I was a junkie… ???

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  • September 22, 2011 at 8:15 am
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    OMG! This is the first time I have felt validated in my pain experience in the past 15 years I have had RA! I have two Masters Degrees, have taught elementary through high school and also been an art teacher. I immediately loved the pen-sword icon on your site, it resonated with me deeply! Currently I am a Licensed Professional Counselor and Professional School Counselor. I have been in the field of Education for twenty-three years. I am an intelligent and articulate woman who has had an incredible work ethic while raising three daughters, mainly alone. I am now an empty nester and despite current popular opinion have found it liberating! I just got out of an abusive relationship where I was broken down mentally, physically and spiritually. Despite this I have worked hard to maintain my dignity and self-respect throughout my extremely painful journey. I have talked to doctors about my pain for years and been told I’m depressed, a drama queen, a drug addict, a malingerer, and been denied entrance to an ER after a car wreck that started a massive flare that lasted two weeks! I do hurt! In fact, I am such expert at suppressing the pain from my ability to use cognitive and behavioral skills that I have walked around on a broken tibia for four weeks twice and had so many broken bones in my feet that I can’t even remember. Yet, each time I go to the orthopedic surgeon for pain management, x-ray, cast or request for medication I am told that I shouldn’t hurt that much if I have been walking around that long on a broken limb! Your article, personal experiences, credentials and testimony have touched my heart and soul like nothing I have read in years! Your excellent questions regarding food allergies, environmental sensitivity and tests for nutrient deficiencies have matched my own! I know I do better on a gluten and casein free diet and am chronically low in my magnesium levels. Sugar ups my personal experience of inflammation levels but is not accepted as “fact” from my rheumatologist. However, these are all just “little” things I can do to increase my tolerance for this painful condition. And sadly, I am weak and succumb to dietary infractions the weaker, sicker or more depressed I become. I recognize the mind body connection and know that my emotions can cause a flare within two hours of a traumatizing emotional event. Happiness, love, laughing and hope all help add to the endorphin levels in my body and help me cope with this disease. However, these are just behavioral modification skills that help me deal with MORE pain. Since finding a loving caring partner, my life has improved enormously, oddly, even at the happiest I have been in years I have just experienced my second septic hip surgery. Fortunately, the ER room I went to believed me when I said I thought I had a septic joint and took me seriously. I had bone saving surgery twelve hours later. I am currently using a PICC line and am having IV antibiotics delivered straight through a vein to my heart daily for the next twenty one days. Educators are paid once a month so this month’s illness, hospitalization and treatment have cost me more than an entire month’s paycheck. I do not know how much longer I can continue to work and have no idea how I will support myself if I become incapacitated. My significant other is wonderful but this is a large burden to accept and commit to. I realize I may become more of a burden than a partner at some point. Finding your site has given me hope and the realization that there is someone out there in cyber world that has similar thoughts and experiences. Thank you for this. I hope that I can find a place for my voice that will be heard, perhaps this is it! My sincere thanks for what you are doing.
    Cathey

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    • September 28, 2011 at 11:04 am
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      Cathey, I’ve been mostly offline for traveling & health over the last couple of weeks. I wanted to be sure you know how valuable your comment is. Thank you for also mentioning your career – many only see us as patients and not as people with lives that we want to lead if we can be well enough. I hope your heart issue can be handled well and you can be back on your feet so to speak!!

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  • September 28, 2011 at 6:52 pm
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    I have something of a high pain threshold. 4 births with no pain relief, and it usually takes me a while to figure out Im ill, I have migraines, cluster headaches and facial neuralgia , but generally manage to live my life and up until recently, have held down a full time job. I had scaiatica and a recurrent disc prolapse for years – needed rehabilitation, but still got on with my life.

    However, i have had rheumatoid arthritis a year, and it REALLY HURTS NOW! I am so angry at the gross generalisation made regarding pain threshold, and doesn’t it just make the patient feel like their experience is being negated as well??!!

    Ra is a severe joint inflammatory disease, which affects weight bearing joints, and hands – we use them a lot. Why on earth would it be a reasonable proposition that the pain is because of a low threshold of pain, when the evidence of inflammation is there for all to see with elevated ESRs , red and swollen joints and so on. I feel so angry reading rubbish like this. It’s the same as saying “All red heads are foul tempered”. Or “all black people can dance well”. Please!

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  • November 16, 2011 at 2:09 pm
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    Alright, that’s awesome, some academics decided my pain threshold is probably lower. I absolutely do not agree, and would love to help them into the vise to feel what I feel, but that’s another story for another day. I would reaffirm what you said above, what the heck does it matter if it is (or isn’t)?

    It’s pain. I’m not supposed to be living with it. Any amount of pain day after day, minute after minute, is unbearable. Yet, we bear it.

    And I can tell those academics, I do not have my boyfriend tie my shoes for me because it kinda hurts. I do not wake up crying in the night because my shoulders twinge. And god bless it, I do not collapse and have to spend the weekend on the couch because my knee is a little wonky.

    I do it because of the pain. There should not be pain. End of story.

    ~Jennifer

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    • November 16, 2011 at 2:41 pm
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      we can’t say it enough times – until there is either a treatment that works for everyone or a cure. THEN it won’t matter but until then, we need to make it clear. Well said Jennifer.

      Reply
  • December 21, 2011 at 1:06 pm
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    I so appreciate that you posted this in response to the lit review you have done on RA pain. There is supspicion that I have RA, yet they cannot figure me out. However, my son has severe systemic juvenile arthritis. His journey with sJA began at 8, wasn’t diagnosed until 1 year and 7 mo later and the pain was way intense and still is. This child went from no pain to 10 plus pain and still most days is at a 10 plus. He hates the pain scales…He is now 12 and we are still trying to find the “correct treatment”. He recently got a port insertion because he has infusions every 2 weeks. After his surgery, of course they asked him his pain level. He said, “My overall body is a 10, but my surgery site is a 6.” It was in that moment that I realized that his pain threshold is huge. It broke my heart. Like you, he knew a life without pain…he knows what that is like to be a zero, but hasn’t seen that in 4 years…and I too want that cure…this disease has not only affected his joints but also his muscles, his vascular system, his heart, his lungs, his lymphs, his stomach …it’s a very progressive disease and we are trying desperatley to stop it! But you know what it hasn’t taken from him? His inner spirit, love for others, and his persistent drive. Thank you for your honesty!

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    • December 21, 2011 at 1:23 pm
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      Thank you so much for telling about him here Rochelle! We can pray for him!!
      His attitude sounds like most RA patients I know – strong fighters. He sounds so brave too!

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    • December 21, 2011 at 1:31 pm
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      My kids and I are looking at your wonderful blog! Thank you again for sharing! Christmas blessings to you all!

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  • December 21, 2011 at 1:08 pm
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    This is absolutely infuriating. My entire life I was told by doctors that I had a very high threshhold for pain. (For instance, I have broken bones TWICE and not realized it – once for a day and once for over a WEEK). I was diagnosed with RA when I was 26. I am now 34. Over the years, I have endured countless needles and IV’s, self injections, and joint aspirations without complaint. This past year I have been dealing with an entire body flare. My jaw flared up an went out of alignment. My neck and spine flared and I could not turn my head. My knees and ankles swelled with fluid – A tendon in my ankle tore from the swelling and I was hospitalized with an infection in my knee from the inflammation. The cartilige in my ribcage inflamed making breathing excruciating. Cartilige in my throat inflamed and I started losing my voice. My eyes inflamed and my vision became partially impared. And these are just a portion of the pains I have dealt with. And through it all, I continued working and “pushed through” while people had absolutely no idea/appreciation of the agony I was in. I would hear people complain about scraping their knee or twisting their ankle while none of them blinked and eye about my pain and some even jokingly mocked my limping. The lack of understanding and appreciation for what RA patients suffer is insulting and dangerous for all of us. I have had Primary care doctors actually tell me that I am too young to have arthritis!! How can better cures and treatments be found when the medical community is so uninformed and when research money is being wasted on people telling us that this is in our heads….

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    • December 21, 2011 at 1:38 pm
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      Why is it that the more pain we have and the more gracefully and silently we endure it, the more others assume it is not real? The question of a lifetime for people with RA disease.
      I hope everyone reads what you said:
      “The lack of understanding and appreciation for what RA patients suffer is insulting and dangerous for all of us. I have had Primary care doctors actually tell me that I am too young to have arthritis!! How can better cures and treatments be found when the medical community is so uninformed and when research money is being wasted on people telling us that this is in our heads….”

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  • January 1, 2012 at 2:25 pm
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    Hi Kelly,
    I am new to your site and have recently been diagnosed with RA…about 10 months ago. I have had many injuries over the years and am familiar with pain and it’s management. RA pain is different in that it is day in and day out…unrelenting, constant pain. I would challenge any of the “researchers” to spend just a week in our shoes and then see how they conduct their studies. Also, I couldn’t agree more with you about why are they concentrating on that aspect of the disease unless they are trying to find a way to alleviate the pain or find a cure!

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    • January 1, 2012 at 7:10 pm
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      Welcome Pattie. I agree with you that it would change the research – it would change a lot of things – if they could know what it is really like.

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  • January 5, 2012 at 6:10 am
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    terrific article! I have always been told by doctors that I have a high tolerance for pain, yet there are days when RA knocks me to my knees!

    thanks for all you do to bring awareness to this terrible disease!

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  • February 15, 2012 at 9:50 am
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    Excellent article!! My full-on onset sent me to the ER with the worst pain in my arm I had ever felt. I thought I was having a heart attack. Now I feel that same level of pain on a daily basis and think “Oh yeah RA sucks.” In other words, I now live with the “worst pain I ever felt” on a daily basis. RA lower pain threshold? I think not.

    Reply

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