Rheumatoid Arthritis Pain in the Twilight Zone | Rheumatoid Arthritis Warrior

Rheumatoid Arthritis Pain in the Twilight Zone

Paper and light

Thank goodness for Rheumatoid Arthritis pain?

A few months ago, I had a discussion with a friend about Rheumatoid Arthritis pain. The friend does not have Rheumatoid Arthritis. We were speaking academically.

At that point, I began to consider how the medical world views Rheumatoid Arthritis (RA) pain. I realized that doctors and researchers examine RA pain from the outside. They think they look at it objectively, measuring it the way meteorologists measure rainfall.

Last week, I was naively reading some study about pain threshold (PT) and Rheumatoid Arthritis. The researchers get to decide whether RA patients have a low pain threshold.  It was only mildly aggravating. Thank goodness I have real RA pain to give me perspective.

The “H” word?

Then, I clicked on a link. All these six syllable words start to numb you. It said “catastrophizing” about pain can lead to a disorder called “hypochondriasis”. Wonder what that is. What a minute – that’s a form of another word: hypochondriac. Hey, I know that word.

You’ll have to read the Arthritis Foundation article yourself to get the full flavor, but Dr. Hassett says “signs that overfocusing has become a mental health concern are preoccupation with minor physical complaints, seeking repeated physical exams and tests, extensively researching a condition, feeling that doctors and specialists don’t understand the problem, and seeking constant reassurance…”

Is it me? Or does that sound a little bit like being part of an RA blog or forum? When I read the definition to my kids, I asked them, “What does this describe?” They thought it sounded like your average RA patient. Ouch.

“Overfocusing” for survival?

Did you ever see the Twilight Zone? Imagine with me for a moment…

A doctor diagnoses you with a disease that will slowly eat away at you like an alien force inside your body. The disease is completely invisible, but the doctor gives you potent medicine. However, he never warns you what the side effects might be or gives you ways to cope in case they raise their ugly head.

Should you be more afraid of the disease or the medicine? You don’t know where to begin, but you have to find answers. They’re not in the newspaper. They’re not on television. Your bff doesn’t know what to tell you.

Of course, you go online to “extensively research.” What other window to the world do you have? You can read case studies and journal articles or abstracts. You can compare hospital sites to forums and message boards. New news, old news, good news, bad news, it’s all there for you to sort through.

The doctor sounds like he doesn’t want you to go to the dreaded internet where you might find something that would challenge his authority. But frankly, isn’t it like he put you in the backseat with a blindfold on and drove you there and dropped you off? Maybe you’re lost – or maybe you are about to be found – in the Twilight Zone.

Coming soon, we’re asking more about measuring pain threshold and wondering what doctors think: “Does Rheumatoid Arthritis Pain Really Hurt That Much?

Related articles on the blog:

Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 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 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 fourteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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57 thoughts on “Rheumatoid Arthritis Pain in the Twilight Zone

  • February 10, 2010 at 7:56 am
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    Just wanted to let you know I love reading your blogs, I’m learning a lot about RA & you’re so entertaining to boot. Thank you

    Reply
  • February 10, 2010 at 8:15 am
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    You gotta love the experts watching out for us don’t you. So I guess we are just supposed to sit in the back seat and enjoy the ride, but don’t look out the window. If we look out the window, we are called a hypochondriac or if we roll the window down and talk to anyone about the ride, we are mental.
    By the way, the arthritis.org needs a proofreader. On the second page of the article, they have the same paragraph twice.

    Reply
    • February 10, 2010 at 8:43 am
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      Uh, yeah, I noticed that. & the most annoying thing? It’s really hard to navigate the pages because you have to get the mouse right on top of this tiny number to click. And there’s no larger “next” button to make it easier. I feel like they don’t get it.

      Rolling the windows all the way down!!! Need some fresh air.

      Reply
      • February 10, 2010 at 9:41 am
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        In case you didn’t know, most browsers have a Zoom menu option or Ctrl + (plus sign) to enlarge the text to make it easier to click. In older browsers, it used to be a font size option.

        Reply
  • February 10, 2010 at 8:59 am
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    Doctors are only “practicing” medicine. There are so many, many things that they have no answers for. I think that there are a LOT of things about RA that they don’t understand, and can’t explain, so they prefer to ignore those things. I periodically get chest aches/pain and I KNOW it’s RA related and that surely it must have some sort of a cause. Yet when I mention it to my MD it’s side stepped. I don’t think we are hypochondriacs. What I do think is that if any of these doctors who treat us had to deal with RA themselves they’d be just as “overfocused” and “preoccupied”… how can you not be preoccupied with something that permeates every piece and waking moment of your life? lol. Thanks for the posts and articles. For the first 6-7 years of my battle with RA I felt like I didn’t have anybody who really understood… and now I’m part of an online community (healthcentral.com rocks!) of people who know EXACTLY what I’m going through and I’m very, very grateful for that. 🙂

    Reply
    • February 10, 2010 at 9:34 am
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      Really great points!

      BTW: I know people who have heart issues with the RA. My grandad had RA and died with heart failure. So, it’s real. Hopefully, though the pain is from something less serious, like the little joints that join the sternum to the ribs…

      Glad I finally found a dr. who is not “side stepping” my questions. Of course, I’ve learned to be diplomatic over the last few years…

      Reply
  • February 10, 2010 at 9:04 am
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    I will try to remember all of this the next time I wish I could get on with life without my hands or feet. At times it seems preferable to the pain I feel.

    Reply
    • March 29, 2013 at 6:01 pm
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      I understand what you are going through.
      Even with the pain med’s I have very sore joints.
      Please take care
      Bob

      Reply
  • February 10, 2010 at 9:45 am
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    Hi Brad,
    I understand your pain, I get the same unending pain in my hands too. Seems to be worse when the weather changes, but not all the time (like you do) either.
    This Northeast snow we are getting now bothered a knuckle in my hand and my achilles tendon tuesday, but not much else and no big ache when the snow is falling (currently Wed am 9:40 EST.) I’ve tried to correlate the weather achiness we get to barometric pressure changes, but it’s not very consistant, aahh the wonders of R ‘effn A!
    When I get as sore as you are, I find that 4 advil work well and I will take in am and at nite before bed if needed.
    I actually have a good Cardiologist who understands the pain and has prescribed me Vicodon for those days when it hurts so badly that your vision almost blurs. Do you have an understanding MD who might help? Frequent hot water hand washes help a little too.
    Please write me directly if you wish, I would like that. You sound like it might help.
    From one crunchy person to another!
    Sincerely,
    Bob

    Reply
    • February 10, 2010 at 10:10 pm
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      Thanks for the link. Yes, that’s odd he closed the comments. Made me want to comment more. 😕

      Reply
  • February 10, 2010 at 2:33 pm
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    Kelly – Your blog helps me fight this disease and live in the acceptance of the reality of what it means for my life more than I could ever say. Thank you for the honesty in your posts. When every minute of my waking day is impacted by my pain or my fatigue I’m not a hypochondriac to want to learn how to live with it; I’m a woman who is committed to living in reality.

    Reply
  • February 10, 2010 at 5:02 pm
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    I’ve been reading so many of your blog entries over the past few days, it’s really helped me learn a lot more. 🙂

    Reply
  • February 11, 2010 at 1:06 am
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    Damn it – I wish someone had told me sooner that it was all in my head, and I would get better if I just didn’t think about it! Hang on, what if I’m not the one in twenty, maybe I’m the two or the twenty… oh no there I go “catastrophizing” again… At least I learnt a new word today, never too old to learn something (even if its crap).
    Looking forward to more discussion about pain thresholds.
    Cheers
    Jo

    Reply
  • February 11, 2010 at 5:29 am
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    wow that article is really bad….
    I too have been down the ‘labelling’ path by an uninformed doctor….who bascially said that I was not getting better due to psychological issues….At that stage I was in so much pain…..and so many of my joints where seizing up that it was usch a slap in the face to hear that from a supposed health professional…..
    Myself being in the health profession as a nurse for the last ???15 years or so, cant believe what appalling things other health professionals can say(or not say!!!!) to their patients….
    Being on the other side as a patient has been a great, but frustrating eye opener…
    But back to the article…just cant believe that such a stupid, ill informed, damaging opinion can be out there for others to read….
    when in intense pain…the last thing one wants to hear is the word hypochondria

    Reply
  • February 11, 2010 at 6:15 am
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    Hi Kelly..last week, i visited my GP (who’s very kind and never dismisses me) and he’s been having a problem with his knee. And he went on to tell me how painful it has been and how he’s had to take a ramp or the lift to visit the patients upstairs. Normally he takes the stairs. He proceeded to tell me that he could not imagine being in such pain ALL the time and in MANY joints. I think he finally somehow got it when i complained about about my newly painful hip.

    Only someone with arthritis can REALLY know how it feels.

    But at least the world has one more doctor who’ll be less judgemental and more sympathetic.

    Thanks for raising this issue.

    Have a good day.

    Reply
    • February 12, 2010 at 10:56 am
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      Thanks for sharing that. I’m sorry it does seem to take pain to really develop compassion in most of us humans. :-/

      Sorry about your hip, Mumbi. Glad to hear from you. :heart:

      Reply
  • February 11, 2010 at 12:48 pm
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    I know the pain I am in and have often wondered how another, especially someone I know so they could tell me, would do at the same pain level. So many people act as if I am overdramatizing the pain or that I have a low threshold for pain. Am I a wuss? They make me question myself sometimes. I’ve given birth twice, I’ve had broken bones and sprains and tendonitis before RA and I would take all of those at the same time over one of my bad days anytime. I do not wish pain on anyone but I do wish compassion on everyone. No one really knows what another goes through.

    Reply
    • February 12, 2010 at 11:00 am
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      I agree & this “low pain threshold” thing is starting to sound “just evil” in my mind. I have much more to say about this soon when we look at these PT – pain threshold RA studies.

      Reply
  • February 12, 2010 at 12:59 am
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    I think a secondary problem is that the pain scale only goes to 10 and somedays the pain on the 1-10 scales is a 20 😛

    Reply
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  • February 21, 2010 at 6:44 am
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    You know the best and only word I have found to describe this RA is ANGUISH….Pure and simple. It took me about two years to finally accept that I have RA.The Dr told me in the very beginning that it isn’t a death sentence. But it can make you wish you were dead some times!! I get sooo tired of people (even your own family members ) thinking you are faking it. They have NO idea how bad it hurts to have to watch others do the things you use to do, to have to sit on the side lines and think”I use to be able to do that”Even when you feel better you know better then to even try to do those things because “feeling better” Is just a temporary thing. What you do when you “feel better” Could cause you to feel alot worse later!!RA is like being torchared every day for the rest of your life. SLOWLY. Kinda like a P.O.W. Your body is the captor and you are its prisoner all the time. Your Meds ad the weather and the stress, they all have a factor in how you will feel each and every day of your life.You have to plan way ahead for major events in your life. Praying every day that your captor doesn’t decide to torchar you on that day!!I just want to scream some times.HEY I CANT HELP IT…DONT YOU THINK I WANT TO BE ABLE TO WALK???? TO WORK ETC…But I know it will only get me more upset and the pay back for that is to feel even worse then I already do!! I pray to GOD alot. He is the only one ( other then people with RA) that really cares and knows and understands.When I hear of a child that has this RA, it makes me cry.Because IM an adult and I don’t understand it/I know they are in so much pain and how in the world will they understand??

    Reply
  • July 8, 2010 at 10:54 pm
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    Why would the arthritis Foundation publish a story like this? Its insulting and sure doesnt help with misconceptions that the world already has about R.A…I dont get it!!

    Kim

    Reply
    • July 8, 2010 at 11:52 pm
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      Kim, I don’t think they have the same perceptions that we do about RA. I’ve read numerous things that make me think that. AF is about “arthritis” (OA) and most RA patients I meet want the Arthritis part of the name of this Rheumatoid disease changed. It’s certainly an interesting dilemma.

      Reply
  • July 11, 2010 at 5:37 pm
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    I have truly been blessed by three wonderful doctors who really do understand about RA and what a toll it takes on a patient’s body. My family doctor diagnosed me, and set up an appointment with an excellent rheumatologist for me. For 2 and 1/2 years the two have worked together to manage my care. My optomologist also sends reports to my rheumy every 6 months because one of the meds that I take has a slight risk of causing eye problems. I feel so bad for people whose doctors won’t listen, or are dismissive. None of my doctors have RA, so they haven’t experienced the pain. What they do have is compassion, the ability to listen, and the ability to work with other doctors for their patients to get the best care. It is really sad that all doctors don’t have that ability.

    Reply
    • July 11, 2010 at 6:03 pm
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      That’s great, Charlene. I hope you can keep them for a long time!

      Reply
  • July 14, 2010 at 12:07 pm
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    Im always having to fight with my Drs. Telling them how they need to work togethe on my RA….They still wont!! Burns me up!!

    Reply
  • October 3, 2010 at 1:06 pm
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    Kelly – What an appaling article at every level – it is uninformed at best and poorly presented at worst with not having been written and proof-read by anyone as far as one can tell!!! And in a magazine I presume is aimed at arthritis patients for their support?

    Once the pain of my PMR was addressed by treatment the depression went away – before I had no idea what I had and the thought of living the rest of my life as an invalid unable to do “normal” living and in the level of pain I was in was scary to put it mildly. At least now I know where the pain is from and experimenting and research produces coping mechanisms. I know I’ll not get a cure in the next few months but my involvement in forums gives me contact with people who DO understand the pain of living with it and the limitations – it’s no help if they don’t, you know they think you’re exaggerating.

    Mind you, whoever wrote it isn’t very well up on his autoimmune disease background. I understand it is a well-known concept that depression or depressive mood is frequently found in autoimmune syndromes, especially untreated ones. The British Society of Rheumatologists mention it as part of diagnosis guidelines – maybe the accent has something to do with it? 😉 🙄

    Reply
    • October 3, 2010 at 1:18 pm
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      Hi Eileen, I share your dislike for the article. I don’t think the publication is used for support. It is full of pricey ads the same as all magazines. Mostly the magazines are purchased by dr offices or sent as subscriptions to those who become members. The focus is generally on osteoarthritis.
      I think all Americans are partial to a British accent, so maybe? ;D
      I agree that depression is common with chronic painful diseases especially. Your comment made me think, though – is it the chicken or the egg? These writers of these articles & studies seem to think that the depression comes first. That is not only illogical – it is easily disproven. What usually happens when a patient gets a treatment that works? Off she goes to live her life back to normal – depression cured. I think this may be important when we think about symptom management too: how many patients would not need depressive medicine if they had adaquate disease control or symptom control?

      Reply
  • February 8, 2011 at 7:17 am
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    I have just been diagnosed with RA–a gift from my paternal grandmother I guess. Luckily, I was diagnosed pretty quickly after I suddently started having severe pain, not only in my hands & feet, but pretty much all over my body. I did wait 6 weeks or so before I finally made my way to my PCP, she quickly refered me to a Rheumatologist.

    I work in a hospital. Many doctors are very arrogant and think they know so much when often times, they really don’t. It is aggrevating that they don’t take their patients’ ideas and symptoms seriously.

    Reply
    • February 8, 2011 at 9:13 am
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      I wish they could all think of themselves as patients and realize it could happen to them.

      Reply
  • February 8, 2011 at 7:18 am
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    Wow! I feel that way sometimes…no a LOT of the times, like I’m not being taken seriously. I research everything….I’m a health care provider AND an RA patient. My rheumy or other doc tells me something – I go online (at our work site’s medical internet) and look it up, to learn more. Then ask questions at next visit, but seem I get brushed off by the docs I see….very frustrating!!!

    I don’t understand WHY they can’t take us seriously!!!! We NEED to be informed – like you said – about taking the strong meds we take, what our disease holds in store for us…It’s for our OWN protection – if we don’t look out for NUMBER ONE, who else will???

    Reply
    • February 8, 2011 at 9:15 am
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      Marie, you are so right. And it was shocking reading Elizabeth Cohen’s book The Empowered Patient that even doctors have this problem when they are patients.

      Reply
  • February 8, 2011 at 7:51 am
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    catastrophizing???? LOL! Leave it up to the medical geniuses to blame US for something they don’t understand….why don’t these (so called) doctors just prescribe Valium then and to hell with all this prednisone, methotrexate, biologics, infusions, etc….valium and counseling is the answer!…that’d be a lot cheaper and a lot safer. Let’s see…I’ve had 9 surgeries to remove diseased, eroded bones that had become sharp enough to slice tendons in two…no big deal. I’m sure most of that pain was in my head…next time i’m in a flare i’ll just try to think ‘happy thoughts’

    Reply
    • February 8, 2011 at 9:17 am
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      You know what, Cindy? The more I think about this the more I realize how ridiculous it is too. They refuse to believe that something this destructive causes this much pain. I hear from patients and parents of little patients every day whose docs say, “You should not be in pain. You have treatment. It shouldn’t hurt.”

      Reply
  • February 8, 2011 at 9:14 am
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    The last time I was at my GP he looked at the latest report from my RA consultant and said… Oh so we’re in the chronic pain syndrome again are we.. well we all know about that!
    So does that mean he doesn’t believe me when I say it hurts or does he thinks it’s all in my head?
    Don’t you just LOVE these people who dictate to you how you are supposed to feel… My RA is supposed to be in remission.. not much physical damage to the joints and my blood counts are ‘normal’ I feel great about that! but why does it still hurt?? As I type this my chest feels like it’s having a knife twisted in there…I know I should have it checked out, but I don’t want them to tell me it’s all in my mind again.. We know it isn’t cause we have to live with it! No wonder we don’t want to go see these people..

    Reply
    • February 8, 2011 at 9:27 am
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      Dear Jakki, I can write this because I’ve known you about a year on Facebook & I know how tough and straightforward you are. If you say it hurts, it hurts. And you are smart enough to know whether it’s RA or some depressive syndrome. Unfortunately for me, I have that pain right now in wrists and shoulders and I’ve had it in my breastbone many times SO I KNOW YOU ARE TELLING IT RIGHT. Bless you.

      Maybe I shall do a few more interviews & write a blog, but you know what? People tell me it wasn’t like this 20 yrs ago when they didn’t have these blood tests to reassure the docs that patients are “responding to treatment” or in “clinical remission.” The great docs know that these tests are just not there yet; we can’t measure RA like we can diabetes yet. But too many docs are confused on this.

      Reply
  • February 8, 2011 at 10:14 am
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    Reading this blog always makes me think—and being that I’ve spent the past year sleepwalking through life, that’s a good thing. So thank you for that. I read and interpreted the bit from the Arthritis Foundation article a little differently. My impression is that it was written by those that have not experienced the disease first hand, but instead view it through the safety and distance of a clinician. These professionals want to feel that they are doing their jobs, and that they have control over their patient’s outcomes. And when patients continue to report pain/suffering outside of the expected outcome, the professionals have thereby lost control. So it makes sense to me that these comments would be made—OF COURSE this is their impression, it reflects their experience! Would you ask Dr Spock to “be more cuddly”? Of course not. I think that it is our job as patients to be discerning. I refuse to take comments like those in the article personally—one has to have a bit of a filter, I think. If it’s not empowering, informative, or otherwise helpful, then why give it any of my precious energy? I can see how it could be easy to allow this disease to consume one’s entire life: it’s scary, cunning, and elusive AND it’s the elephant in the living room that won’t go away. It takes a huge commitment on the part of the patient to simply get through most days. I spend a lot of time and energy on dealing with medical issues and taking practical steps to modify, work around, and make peace with my body. But I refuse to allow it to define me. “Overfocused”? Perhaps I am from time to time. Sometimes I need to be to survive. I can only share my experience of this disease. How the doctors choose to interpret that is not my problem.

    Reply
  • February 8, 2011 at 10:48 am
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    Ya know, if this is how doctors view us (or some doctors…I have GREAT doctors who listen and care for me amazingly), it’s no wonder our friends and family and coworkers just don’t get it. I tried listening to the making it up theory for nearly my whole life. my pain started when I was 7. Now, at 25 I saw a GOOD rheumy who Dxd me and found joint damage that would not have been done had I been on meds since I was seven. So while I went on with my life not tellling anyone about the pain and anguish, RA was destroying my body. Sounds productive yes?

    Reply
  • February 8, 2011 at 12:29 pm
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    I have given birth twice totally naturally, and was told I have a very high pain threshold, before I was diagnosed with RA and got sick I would hardly even take a tylenol! I find it really ironic that suddenly you can be told that you have a very low pain threshold now because you have an invisible, chronic disease where severe pain is associated on a daily basis.

    But if I am really being a hypochondriac can I stop taking that MXT now? Pleeeeease!

    No wonder I have to hide my pain and that my friends and family think I am making a big deal out of nothing or being a drama queen or seeking attention. No wonder I am worried about being a pain calling my doctor for another problem… Again, and not wanting to try again because I have waited for his return phone call for 3 days. No wonder with more articles being published like this!!!!! I would do anything to get out of this twilight zone, OR… Invent a “press this button to feel my pain” machine.

    Reply
  • February 8, 2011 at 12:47 pm
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    Having had this disease and related issues for 20 years, it’s been absolutely necessary for me to focus on it intensely ,during different parts of it, as a matter of simple survival. I try to integrate RA into my life, but sometimes it has demanded my full attention, despite me trying to push it off my plate.

    As far as reasons that doctors don’t want their patients utilizing the internet for information: I think that while some docs clearly don’t want to be challenged by their patients who have gone to the internet, there are many, many others who simply fear their patients will be highly misinformed by the great amount of inaccurate and erroneous information that pervades the internet.

    Wouldn’t it be ideal, if instead, doctors and other health professionals would embrace the available technology ;and be able to recommend dependable sites such as RAWarrior, for their patients to go to, and find accurate information? There are so many sites that have poor information and where certain people try to give out medical advice, despite not having a professional license. A physically and emotionally weakened and unenlightened patient may take that advice over their doctor’s. That is a dangerous and frightening thought.

    The internet is like the wild ,wild west. I am so grateful for Kelly, and RAWArrior, who is changing that wild west landscape, and serving to advocate and provide accurate information for RA patients and their friends and family. It’s time for our docs to get on board and integrate social media into their practices. The ideal place for them to recommend to their patients is RAWarrior. In fact, it should be the cornerstone of it.

    Reply
  • February 8, 2011 at 1:50 pm
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    I must remember to breathe , control myself and not act like a hypochondriac next week when I visit a pulmonologist to find out why my lungs have minor collapsing due to my rib arthritis, and I will remember to tell them my xrays are real, not altered.
    I wish the people who write these articles would just feel our pain for one day! Knuckles and other joints that balloon from semi normal to huge in an hour would be a learning experience for them. I am glad I have a caring primary and rheumey!

    Reply
  • February 8, 2011 at 3:13 pm
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    You are spot on with this article Kelly! And I liked the window comparison by another reader. I really tire of the invisible disease status that we have as RA warriors before our joints look deformed. They have to get there somehow. You think that the eventual twisting of our hands,feet, etc,somehow happens without pain. That is laughable. I’m saddened that Arthritis Today would advocate such an article. We have so much to wade through as we drive our RA car. At this rate we will need a cattle gaurd on the front of it!

    Reply
    • February 8, 2011 at 4:26 pm
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      Oh, you’re good, Beth. Maybe I can get my artist daughter to draw that!

      Reply
  • February 10, 2011 at 3:32 pm
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    Once again Kelly you are right on target with your blog. I recently made a comment about RA being torture. Doctors wouldn’t call those who were held prisoner by enemies,hypochondriacs due to a finger that was twisted slowly,feet they can no longer be walked on or nerve damage so bad that parts of your body don’t move.If you view some of our pictres of RA and view those of POW’s I dare you to find a difference.There is only one that I know of our enemy hides within our bodies and is so stealth the doctors with al their medical knowledge and tests can’t find it. I do feel that since most of us are women and in our prime, doctors don’t understand the amount of loss in our lives. Personally I call my pain my own “Rheumatic Stress Disorder!”

    A TV show told the story of a vet who came back with leg damage hurting so badly he elected to have the feet and lower legs removed. He was able to return to being a marathon runner with the new prosthetics. I imediately thought about my tennis and jogging lifestyle that was long ago after having 8 screws and 5 fusions into my ankles/foot joints and wrist. Imagine if I surgically removed my feet and was be able to exercise again! Yeah that is dramatic, ok for a soldier who ought an enemy but craz for a woman who has fouht RA at the time for 20 years. Since then my RA moved into my knee’s and hips so no, I am not looking at this as a solution. However, at that time it made sense to cut off and remove the horrible pain I was in,the doctors had no solutions just a new med that didn’t help me.

    Our pain is there, our pain is real and disfiguring and it causes stress, major stress in our lives. It ruins marriages, careers, motherhood,relationships with friends, sex lives and plays with your identity. For me to want to remove a body part to try to have some semblance of normalcy in my life was dramatic, but also a solution to a problem many doctors aren’t able to grasp how life changing this disease is.

    Reply
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  • March 7, 2011 at 7:59 pm
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    I just read through the article from the Arthritis Foundation.
    Please tell me that was a bad dream.
    Then let them explain the hideous swelling across the knuckles on my hands and the bone damage in my hands, the deformity in my feet. But it’s all in our head. I want them to explain to me why I cant even squeeze a tube of toothpaste some days. Sorry that fired me up. I am a true blood southern woman. I work a 40 hour job plus a week,I am there everyday some days wishing I could die. But I am there with that supportive smile on my face. I can’t believe the article it’s a joke. That’s why Arthritis needs to taken out of the disease,it needs to be called Rheumatoid Auto Immune Disease R.A.I.D.

    Reply
    • March 7, 2011 at 9:20 pm
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      Hi Pam, I love your comment. That was my reaction too. How can they believe this garbage?? But over and over I’ve read that “baloney.” Changing the name is one of the best ways to change the impression people have of RA – you’re right.

      Reply
  • April 10, 2011 at 5:32 pm
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    This article is a crock, I usually read all articles with an open mind, being a retired RN, but this one, especially being in the Arthritis Today magazine!!!! They are supposed to be on our side! How dare them call us hypochondriacs! Let them walk one day in our body and then decide what our pain thresholds are!!!! They have no idea what our lives are all about, what we deal with day to day, how difficult it was to even get diagnosed, to get a doctor to tell us what RA even was, we were lucky to have the internet to guide us with information, then to tell us it was causing us to seek more “medical advice and care”. I have a totally different opinion of the magazine now, I usually read it from cover to cover, don’t think I will now! I am so proud of you and your posts Kelly! You keep us informed! Keep up the good work! The DMARDS alone are dangerous enough to be scared to death, let alone all the other meds we have to take just to make it through the days, then the nights come, we can’t sleep good due to the pain, our whole lives changed in an instant, of course we are nervous, we need assurance that we will be okay, we have been diagnosed with an incurable disease and nobody else can even see it! Well, ARTHRITIS TODAY, I hope you get a chance to read this post from this reader, I deal with the BEAST called RA every minute of every day, it takes away from me, my children, my grandchildren, go ahead and call me whatever you want but I am surviving the best I know how!

    Reply
  • April 10, 2011 at 6:13 pm
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    Wonderful response to a horrible article, Janette, I also read the article about the vet. RA is a beast that does ruin our lives, it takes everything away and only allows us to do what it wants us to do, when it wants us to do it. Plans can be made but RA is ultimately in control! I am a retired RN, it took my career away in a flash, with that most of my dreams for retirement, can’t travel, no money, all my money goes for medical! Most of the time life sucks due to pain and disability, so how dare Arthritis Today tell us not to be “depressed”. We should wage war on them, yes, I am ANGRY! I am sitting here my neck, with a titanium plate and needing one in my thoracic spine, hips, shoulders, knees, elbows, wrists, fingers~~~~all hurting~~~~RA, THE BEAST to blame, and they claim to “understand my “pain” I have a good team of doctors, thank God for that. But it is publications like that that make it harder for us that suffer from chronic pain to get the help we need. Drug abusers already make it harder for us to obtain medications for our pain and the DMARDS are so dangerous, but we soldier on and take them to prevent damage to our joints and internal organs, but we have to at least havesome sort of control over our lives, and I have always believed that “Knowledge is Power” and now the Arthritis Today Magazine wants to tell us that makes us hypochondriacs! Well, I do not agree and I don’t think I will be picking up their magazine anymore or subscribing to it either. We must stick together!

    Reply
  • January 6, 2014 at 9:48 pm
    Permalink

    I really need some help. I have been on methotrexate for almost a year. I also take 7.5mg of Mobic a day, but the pain has become so intense in the last week or so. My right hand is beginning to change shape and my left is now hurting as much as my right. When I was first diagnosed I looked for a support group but I haven’t found one. I have met a few people but they don’t seem to want to discuss anything. I try not to feel overwhelmed but today, it hurts everywhere. I have gained weight and am suffering hair loss. I do not want to go on predisone. I don’t understand that I can just touch my arm or leg and I have pain from just a touch, what is happening?
    Thank you for all your post.
    Jill

    Reply
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