Rheumatoid Arthritis Pain

Quiet & Rheumatoid Arthritis

Pain usually does not bring me to tears. I just get more quiet. More pain; more quiet.

When I was getting ready to have my first child, I prepared myself saying, “I can do anything for a day.” Of course, I was pretty frustrated when labor pain actually lasted three days. But I learned a life skill that I use every day, how to have a high pain threshold.

Lately, those days keep coming to mind. Could it be that my baby turned twenty last week? Or could it be the familiar quiet?

This is hard. I never write about this pain. Formerly, I would have been alarmed at the pain this severe in any one part of me. Here I sit with pain in most of the joints in my body that is as harsh as labor at times.

I can barely walk. I can hardly do anything at all right now. It’s getting very quiet.

Rheumatoid Arthritis pain is just plain ugly

This is difficult. I feel the same as so many who have written to me: no one understands. Friends and family don’t have any idea what Rheumatoid Arthritis pain and disability are like. And they don’t usually read my blog.

RA pain did bring me to tears today. I told my teens that it’s like being in a dark room. I need a window.

Writing about RA pain is hard, too. If we tell it like it is, we are whining. If we hold back, we’re glossing over it.

Rheumatoid Arthritis pain is ugly and there’s no pleasing way to discuss something so ugly. Recently, someone told me it’s so much worse than I present it; someone else said I present it so much worse than they experience it. Sometimes, I think if I described how ugly I think my own RA pain is, no one would read it.

Postblog: Most of us agree that the media presents an RA Lite. This story about a warrior named Craig Cain is an exception. Have a look at this straightforward presentation about a brave young man who’s been fighting Rheumatoid Arthritis pain and disability since he was five. Bravo to the Memphis Commercial Appeal for a candid view of Rheumatoid Arthritis pain.

Recommended reading:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

71 thoughts on “Rheumatoid Arthritis Pain

  • April 1, 2010 at 9:03 am
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    I have spent days curled up in bed in complete silence…If my room mate happened to ask me “what happened?”, I would say “not feeling well”…that would be it! I cry a lot…but not so much because of pain…It’s always something else that triggers it and tears come trickling down my cheeks…..When pain gets unbearable I try to take myself towards numbness…and hope this too shall pass!

    (Its surprising that other than our pain there is something else we have in common and we share, even though that involves “saying nothing”!)

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    • April 1, 2010 at 9:29 am
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      Shweta, Yes, toward numbness. My doc says that she can see I just “go somewhere else” when the exam is hurting me. It’s like there’s a big “IGNORE” button. But if you have to use it, you have to ignore everything at that moment. Sympathy for you for those lonely times.

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      • April 21, 2010 at 4:29 pm
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        I was diagnosed in 2008 and spent three months in bed unable to do anything. I just waited way too long to go to a dr and was immediately diagnosed with RA before the results were all in. My question is how to control the pain when you have to take the vicodin every day to just function. I worry so much because I wonder how I am going to manage the pain when they lose their potency. I have severe RA and just can’t get it into remission. There is not a moment that I am not fully aware of my RA and how it effects me. I can’t even imagine a day feeling “normal” if there is such a thing anymore. I went from working out five days a week and being extremely active to struggling through each day with four teenagers. RA is a life changing disease and such a mental disease. Okay, I went off topic. Anyway, my question is how do you manage to control the pain?

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        • April 21, 2010 at 8:43 pm
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          Hi Cynde, My answer is that controlling the disease is ultimately supposed to make the pain much less. So disease control with aggressive treatment is what works for most people. If there is a tremendous amount of joint-related pain this early in the disease, my guess would be that the disease is not controlled. That may sound simplistic, but it has to be said first.

          NOW… Hopefully, more can be tried to control the RA (such as DMARDs & prednisone) so there will be less leftover pain to deal with. BUT, until that happens, there are many anti-inflammatories and pain medicines to try in combination. And there are pain specialists who can use injections or other creative methods to address specific pain. You should not have to live in blinding pain at all times relying only on vicodin, no. But do all drs understand how much pain you are in? No. You will have to advocate for your needs and I know that is usually not easy.

          I’m sorry for you. I think I know how you feel. (At times, I have a hard time even finding another person with RA who I think understands about this. I too have 4 teens and have not had one moment without full flare in over 4 years. I too was very athletic & find it difficult to not only have the pain & disability, but also be judged by those with milder RA who can do more than I.) I hope this helps some. It is hard. I hope you can find better solutions soon.

          Edit: Cynde, I meant to imply that if it where not very early on in the disease that the source of pain would be more likely to due to structural damage that may be relived somewhat or repaired surgically. Of course that is still possible if it is focused on one joint – that’s just not what I thought you meant.

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  • April 1, 2010 at 9:12 am
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    You have described the pain aspect perfectly. Today I am very quiet. And very sad. I can handle alot but when the pain makes walking nearly impossible my ability to “handle it” gets more difficult.

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  • April 1, 2010 at 9:21 am
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    You have put into words exactly how i feel. thank you so much.

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  • April 1, 2010 at 9:24 am
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    Kelly: You have my deepest sympathy and all my empathy today. I think I know what your room looks like, I have my own dark, dark place. All I can do is send positive thoughts that soon the window will open and flood you with blessed light.

    You have my sincere gratitude for hosting this blog, with my Mom gone, it is the only place I can come and have someone understand. While I am so sorry for your suffering, you know what it is like. This is the first place I’ve ever really connected with people who “get it”. The only other person that does is my RA doc and I’m terrified he’ll retire soon. I know how lucky I am to have him, because he gets me too.

    Take Care…

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    • April 1, 2010 at 9:49 am
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      Kelly, I am so sorry that you are in that rough of shape that you have to go to that place right now. I really understand what you mean though. I went there for OCT/NOV/DEC09. The funny thing is I barely remember anything as well I totally even shut my brain off and went numb. My husband and I call it my RA coma, he said tears would run down my face, but I dont really remember crying. I hope you get relief really soon, what a horrible place to be. Extra special energy being sent your way today. I will say a little prayer as well.

      {{{hugs}}}

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      • April 2, 2010 at 10:38 am
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        Thanks, Nikki. It’s been steady downhill for 4 yrs and the last 6 months have been very steep. I try to keep hope that I’ll improve as others do. I’ll keep fighting. :soldier:

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  • April 1, 2010 at 9:33 am
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    Bless you Kelly, for your courage and for your strength.
    Sometimes the tears I cry when I’m in pain are tears of frustration, tears of hopelessness, tears of anger and even sometimes tears of joy…and no…I’m not someone who enjoys pain…rather that I can still feel. But always my tears are shed alone. RA is a very lonely disease. Thank you for being there Kelly and helping me to feel connected.
    Love and Light CJ x

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  • April 1, 2010 at 9:40 am
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    Thank you for pointing out how difficult pain is for all of us with RA and other chronically painful conditions! I am known as a huge talker (I mean, really a talker) but when my flare is kicking my emotional butt, I finally become quiet, too, and it’s how a few of my more intimates friends and family recognize my painful days.

    RA is such an insidious disease and affects every part of my life, but we chronic pain sufferers are some of the bravest, most empathetic people I ever meet.

    Hang in there, fellow warriors! I’ve been diagnosed with severe JRA since age 3 and I will have been a front lines warrior against the disease for 40 yrs now. I look banged up and misshapen and I hurt non stop but I still keep going and have a good life most days.
    Bless you and happy spring!

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    • April 1, 2010 at 9:54 am
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      Donna: I so wish to feel brave again, it’s 39 years for me. Have you ever lost your bravery and if so, how did you get it back?

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      • April 2, 2010 at 10:36 am
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        Nanc, you seem brave to me. This is just a very low spot because of your recent losses. I believe, with God’s help, you will press on to the next thing. :heart:

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  • April 1, 2010 at 10:07 am
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    Kelly – I’m new to this and have just recently found your site….today is a bad day, the flareup started last night and today is somewhat abating….I am one of the “lucky” ones, I don’t have have very much pain and very few flareups, the medication works very well for me….except for today. Today I am struggling. It was good to read your blog today, it helps to know how it is for someone else. Today I have to remind myself to be grateful. Today I have to do things one at a time. Today I am grateful for this sharing.

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    • April 2, 2010 at 10:42 am
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      Hi Felicia, Gee, I’m sorry for you to read this post newly diagnosed. I’m sorry if I scared you. Treating early, hopefully you’ll never go through this. Just finished my newly diagnosed page – click here. Maybe it will be helpful for you.

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  • April 1, 2010 at 10:25 am
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    I would not be as brave as you with so much pain, sorry Kelly and others here, that you have to go through this. I would be screaming for heavy duty drugs. A person shouldn’t have to deal with this much, without help. :pill:

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  • April 1, 2010 at 10:42 am
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    Kelly,
    You always say things so eloquently and sum it up perfectly. I only usually cry at night…often in my sleep-my husband tells me. I’m on the verge of beginning heavy duty meds. I think…it’s been complete back and forth in my head…but like you said I too, “need a window”. Keep your head up and rest or sit in the sun…
    Jene

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  • April 1, 2010 at 11:21 am
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    Kelly, I’m sorry the pain is so bad. I hope you get some relief soon. I do the same thing, I get quite, and if someone asks, I say I am fine. Can’t describe how bad it is at time.

    Today i have bad pain in my shoulders and hands and wrists and thought to myself, why does it have to be like this. Will this ever stop….little pity party this morning.

    Get some rest if you can, it’s about all we can do. Let us know how you are doing.

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  • April 1, 2010 at 11:56 am
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    It changes a person when you have to endure chronic pain, day after day. Then there is the uncertainty of what the disease will allow you to be able to do or plan and follow through each day. So that constant pain and anxiety can easily lead to depression. A vicious cycle! I, too, get quiet with the more severe pain.. Labor, the same thing-I just wanted to be left alone.

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  • April 1, 2010 at 11:56 am
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    I totally TOTALLY understand. My pain has been so severe for the last two weeks. My trip to the RD yesterday revealed that I am worse, there is damage to my joints and he is moving me on to Enbrel.

    I get quiet, too. I don’t share when I am in pain. It is impossible to explain it anyway.

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  • April 1, 2010 at 12:16 pm
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    I am glad I found your blog. I don’t think people always understand the emotional, dark aspect of pain. I’m 31 years old and was diagnosed 5 years ago. It’s not that bad yet, at least not as bad as it could be. We are able to keep it under pretty good control with some pretty simple medications, for now. Sometimes I fear the future . . . but I’m trying to enjoy the moment, and every loud sunny day I get. 🙂

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    • April 2, 2010 at 10:45 am
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      :sun: Loud and sunny. That’s the spirit, Erin. Sorry if I sounded dark. Hopefully you will never experience that.

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  • April 1, 2010 at 1:05 pm
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    I am sorry that you are having a bad day. I think we all try to endure as best we can. Knowing that there are others who understand makes a huge difference. Hang in there this too shall pass. A better day lies ahead. Happy Easter everyone.David

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  • April 1, 2010 at 2:49 pm
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    I am sorry that today is a bad pain day for you. You are right, living with pain everyday of your life is like being in the dark. I understand what you are saying how it isn’t easy to describe the pain we feel on any given day or how to get others to relate. I just keep moving and on the days where it is worst, I just try not to let the depression consume me but it is definitely depressing.

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  • April 1, 2010 at 3:36 pm
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    Kelly,

    Thank you for being transparent. I read your blog all the time, yet rarely find the time to tell you how much I appreciate all you share, both informational and personally. I too am sorry for your pain… I am sorry that anyone has to be in pain. I, like many of you, get quite too. Even quite with my husband and my kids and sometimes, when I try to do what should come quite easy, I cry. My hands should not hurt… I should not wake in the middle of the night with a burning (literal) desire to cool them! This post today made me remember… people do understand and that I know when I am quite… there are others who are quite with me!

    Kelly, thank you… truly, you are a gift, a blessing, an encouragement!

    God Bless,
    Theresa

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    • April 1, 2010 at 4:45 pm
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      Theresa, thank you for the sweet encouragement. I feel so frustated about this post. I never meant to say that this is how it is today. This is how it is every day. It just gets worse. I broke my silence about pain and now I feel more misunderstood. I will try to let your nice words sink in.

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      • April 1, 2010 at 5:13 pm
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        Dear Kelly, please don’t feel that way. We all know that everyday with RA is a painful challenge..and despite that you make the most of it, not only for yourself but for all of us too….You have given strength to so many…It’s okay to share when you feel vulnerable and thats what we all are here for. Please trust us, your pals, to understand what you must be going through everyday. I pray that your health improves. :rose:

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  • April 1, 2010 at 5:47 pm
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    I completely understand where you are coming from, thank you. I get very quiet as well. I told my family that when I am quiet it’s because I don’t feel well nor strong. I don’t want to leave the room and miss out things but I’d rather just be a fly on the wall. Sometimes I just bluntly have to say, “please don’t ask me questions, I have no energy nor desire to answer them.” Harsh yes, but sometimes I have to, then I want to cry. I don’t express how difficult my chronic RA is, I am a very closed person, but blogging has helped. And I agree, it’s annoying how my family doesn’t always read it, if they did they would understand and wouldn’t ask. Not having the ablity to walk is the worst! I’ve been there, you “look fine” you have working leggs, mentally you’re a strong yet it is still not enough! Stay strong, meditate, and breath.

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  • April 1, 2010 at 6:00 pm
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    ((((Kelly))))

    Please don’t feel misunderstood, here in what we think of as a very safe place, thanks to you. If you feel misunderstood because you think readers interpret today as worse pain than other days, I don’t see it that way. I think your readers, your friends here, understand from your words here that silence does not mean absence of pain.

    It’s just that when you can so eloquently share your feelings, those feelings that others here can relate to, you open up an opportunity for discussion, a time and a place where your friends here can acknowledge your pain and our empathy for you and for each other. Not just today, but for every day. Especially the silent ones.

    You are in my prayers, special warrior friend.

    Love you,

    Caysea

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  • April 1, 2010 at 6:22 pm
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    Kelly, I’m so sorry you are having a bad day today. My hope is that you may feel support from others who understand, and that the joy and warmth of spring will spread some cheer and blessing to you.
    My difficult days are not every day as yours are, but I can’t tell you how much it helps to be able to read this caring blog daily and know there are other people in the world who KNOW how I feel on those bad days! Thank you for sharing your life with us.

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  • April 1, 2010 at 6:41 pm
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    Kelly: I’m so sorry that you feel misunderstood, and I’m more in awe of what you have accomplished. I used to do a short course of steroids, Medrol – or a Kenalog shot when I just couldn’t do it anymore. Sometimes that break from 24 hour a day pain helped me keep going. My only suggestion for short term steroids is don’t let them make you think you are superwoman. It took me years to learn that lesson, the hard way.

    I don’t know what meds you take. Do you have any pain medication that works, or don’t you feel you want to take them? There are many, many days I have to fight with myself to take only my prescribed dose, but I couldn’t do anything without them at this point.

    I so hope you find some comfort, the body and mind can only take so much and you must be so very exhausted. The first 5 years after my diagnosis was what you described and I misread. I can’t stop fighting it and the grief has landed me in therapy again, because I am so sick of fighting to just have some quality of life. As long as I could keep working I was OK. Going on disability is what did me in. I have never achieved acceptance, I wasn’t raised that way. All I want is some sense of peace and it’s so hard to find.

    If you’re newly diagnosed and happen to read this, this may never be your path to walk, please don’t let it frighten you.

    I just wish so much that I could help you right now.

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    • April 2, 2010 at 11:09 am
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      Dear Nanc, thank you for being so concerned for others. I too hope a newly diagnosed person will not be afraid after reading this page. Maybe it will encourage them toward treating the disease.

      I know what you mean about disability. The only way I know how to function is to be a combination of the Little Red Hen and a US Marine. How does that work when you cannot move? Like you, I’d rather not be dependent on others. I understand the “lack of acceptance.”

      I feel confident saying that you are precious to God and he does not judge this as wrong. This disability is not our fault. And your encouragement has helped me. O:-)

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  • April 1, 2010 at 7:10 pm
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    Kelly,

    I am so blessed by the fact you choose to share the amount of pain you suffer in silence due to the very fact it makes me know I am not crying wolf when the pain is almost unbearable and RA is alot more then the commercials would have us beleive…..They show “”life happily ever after when taking their medicine, and that has not been the case for me.

    After reading Mr. Cain’s story, all I could think of was how lucky I was to get RA at 51 and I thought they said it was a stressed out middle age woman’s disease.Yeah not so much……

    Praying for better days for us all……:)

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  • April 1, 2010 at 9:59 pm
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    HI Kelly,

    I understand that it isn’t today and only today; I get this fight is daily sometimes you work through the day, sometimes you have to work by the hour and sometimes, it is moment by moment. I appreicate the post on pain. I truly do. It is something I never know how to explain, how to communicate without feeling like I am not clear. I get so frustrated that there is NOTHING to compare it too. I wish there was a way to explain it so people understood. Anyway, I just felt like I wanted to add more as you have been heavy on my heart and I think you are awsome to share so much!

    Much Love, Theresa

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  • April 2, 2010 at 12:39 am
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    Dear Kelly, you who’ve given all of us so much in terms of knowledge, of enlightenment, and in courage — please know that you can ALWAYS speak of your pain, and that your readers will ALWAYS understand it and empathize. There are so many different ways that RA hits people, and as individuals we experience it in many ways as well. But one thing we all have in common is that RA causes us pain, and few of us (like you) are able to share it with others in a way that’s really understood. Here, with this great blog of yours, you’ve created a safe and warm spot where we can ALL come for support and comfort, YOU included.

    I wish you a lighter heart and less pain very soon. I hope the new meds you’re taking will give you some relief and some very-much-needed rest. I’m sending all the love, warmth and comfort in your direction that I can. Take care. Be gentle with yourself. And know that you have lots of friends in the world wishing you well.

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  • April 2, 2010 at 9:31 am
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    hi kelly
    same happens with me too….
    i love to talk…bt when i m hving too much aches, i m also too quiet..
    my quietness makes my mother know that i m in pain,the next day when i m talking again normally[i talk a lot 😀 ]
    mom says ” u r ok today”
    i say yes…
    even i dnt cry,bt only bcoz i dnt wanna hurt those who take care of me…
    bt in my room,when i m alone…..i cry a lotttt…..i bring out all my frustation….
    after this cryng session… 😉 i feel much better…
    and light too….
    tc

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  • April 2, 2010 at 12:26 pm
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    Hi Kelly, you are not misunderstood. And because of you we can all say how we feel and not be judged or misunderstood. It’s an everyday battle. Pain every day. I think It just gets that maybe some days are less tolerable than others because we get tired of it and get tired of being quite about it. I know that is how I feel. But then when we do say something, it’s not fully understood, or nobody thinks its that bad because we generally don’t say anything. You are so strong, this illness can make us Warriors feel so weak at times and that is ok. At least that is what I tell myself. 🙂

    Today is a high level pain day for me. Yesterday was too, and the day before, but yesterday I was able to handle it better, today not so much. It has worn me down. So I verbally said to someone here at work how much pain I am having…it was just like oh, i’m sorry than subject was changed. I wanted to scream, no don’t you see, someone is slamming my joints with a sledge hammer right now and I need to be attached to a morphine drip, but I didn’t, I quietly went about my work. Our quietness has people thinking we are not in that much pain I think, but I would rather be like that than complaining about it all the time.

    Hope I am making sense, as we know high levels of pain can make the thoughts muddled

    Hug to you.

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    • April 2, 2010 at 12:40 pm
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      :heart: Thanks, Taffy. For me it’s worse than usual right now because instead of 5-10 joints flaring at all times, it’s 20-30. The last 2 meds I’ve tried have not helped, so it’s a steep downhill slide of “progression” this last year. The “best” I ever got from a med was when I was on a double dose of Humira. I’d get 2 days per week in which the symptoms of RA were cut by about 50%. That was a couple of years ago. It’s much worse now – that I’d gladly go back to that pain level. If all of your joints are flaring at once, it’s very hard to move. I don’t know how you or any of us press on in such sledgehammer pain as you say, but like you say, we just do. And I do not envy you doing it in front of co-workers. At least I work at home – and sit on my sofa!

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  • April 2, 2010 at 1:21 pm
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    Hi Kelly, I wanted to say how much I wud love to give you a hug and try to help with your pain. I don’t suffer from RA myself but my best friend does, and I am becoming more familiar with the symptoms and illness the more I read your website and the wonderful network of people who visit this site. My friend is newly diagnosed (a few months ago) and sometimes it makes me cry to realise that she may go through the same kind of pain that so many of you brave people do. Thank you for providing invaluable information so that I can face the times ahead with Ol and be as much of a friend as I can be. In the meantime, I send you hugs and healing thoughts and pray that you will find relief soon and that the sun shines again in through the darkness of RA, you are much loved and cared for by everyone who visits your blog. With much affection, Rose.

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    • April 2, 2010 at 10:15 pm
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      God bless you, Rose. There are a few like you out there and you are such a gift to us with RA.

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  • April 2, 2010 at 5:45 pm
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    @Nance, I wish I could articulate how to retain bravery, so I could help my fellow sufferers. And don’t mistake me, I am not Pollyanna Sunshine everyday, but most days no matter how immobile I am, I just remind myself there ARE others much worse off than me, and diseases and crosses much worse than RA (although many days my body doesn’t agree!! LoL!)
    My faith in God and lots of laughter keep me going. I don’t know about brave, but at least I keep going when I can.
    Hugs and empathy to you.

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  • April 2, 2010 at 7:00 pm
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    I find relief just knowing that I’m not the only “QUIET” one. I had to have nerve and muscle testing done yesterday, does anyone know how incredidbly painful those tests are? I lay on that table in complete silence throughout the testing. The Doc. had an attitude and kept saying oops I have to adjust that one, :pissedoff: just to stick me again and see if I would make a sound. He never even wiped me with alcohol!I was already wrung out from the 2 week flare I’ve been on! I live alone so the only one to notice my silence was my dog as she licked the tears off my cheeks. I’m praying for sunshine Kelly so that we might all Speak again! In God’s Love! :rose:

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    • April 2, 2010 at 10:11 pm
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      Alice!!! I’m sorry!! I went through that test for neck, shoulder, & arm. Why do some of these people seem to have an attitude as if we are there to get attention?

      Did you know what to expect? No one warned me about the horrendous pain or that I’d be almost naked w/ the needles sending shocks for almost 2 hrs. I had no idea. I lay perfectly still with tears dripping down my cheeks, thinking part of my soul was going away.

      I’m glad for your little dog, Alice. I’m not alone, but I get very lonely, too. I think most of us do.

      Happy Easter, Alice. :heart:

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      • April 3, 2010 at 12:37 pm
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        Thanks Kelly! No, nobody told me what to expect and I, :pissedoff: like you, lay there practically naked w/tears burning paths down my cheeks for over 2hrs.! I have bruises on my arms and legs that I just noticed, they’re really bad at the nodule on my right elbow and wherever I have a varicose vein, I was a waitress for almost 35yrs. so they are plentiful. But I have no permanent nerve or muscle damage,I care because why….does this have anything at all to do with my RA? I’m having 2 discs removed from my neck what did this test have to do with my surgery? I Love You All! Thanks for letting me let it out….God’s Blessing’s! :rose:

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  • April 6, 2010 at 2:15 am
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    I understand the pain you are speaking of. I understand the high pain threshold and the looks you get that say “but you don’t look sick”. I understand the impatience when you try to explain how you’re feeling and your loved one calls you a drama queen or remarks that all you do is complain, so you learn to keep your mouth shut, only to have those around you to forget that you’re in pain.

    There is another group of people who have this kind of indescribable pain. The condition I’m speaking of that so parallels your experiences with RA is having a spinal cord tumor. The symptoms, treatment, and prognosis may be different, but the human experience is so similar that it’s shocking.

    20 years ago, I had a 4 inch, hemorrhaging tumor cut out of the spinal cord in my lower back. I wasn’t supposed to be able to walk when I woke up, but I kicked spinal cord tumor butt and went on to live a vibrant, healthy life. Unfortunately, it doesn’t seem that being a spinal cord tumor survivor is going to be the hallmark of my life because I’m in the process of being diagnosed with RA.

    In one of your other posts, you said something to those with Palindromic RA about moving as much as you can while you can and doing everything you can before it’s too late. These words struck home with me. As a spinal cord tumor survivor, all I can say is “I get it” – “Been there, done that”. Like I said earlier, I thought I’d already fought the battle of my lifetime, I mean, come on! 20 years ago I OVERCAME the impossible, so the rest was supposed to be smooth sailing, right? Apparently not, because it seems I must gear up for the second battle of my lifetime.

    But if dealing with RA itself isn’t bad enough, add to my struggle the lingering pain and other issues left over from my spinal cord tumor battle. I may have won that war, but I didn’t walk away completely unscathed… I can only hope and pray that I do half as well in this battle. Darn my luck!

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    • April 6, 2010 at 3:42 pm
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      Oh my – Jody. That’s just not fair, is it? I hope you do well too.

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  • April 7, 2010 at 12:47 pm
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    Today is one of those quiet days for me. I am usually a talker BIG TIME. When I have a quiet day I am usually on my laptop a lot more than usually and rely on it to be my voice, at least on days when I can type.
    I am home from work in bed with my trusty sidekick (My Cat) and we are both just doing nothing and being quiet. It’s funny how animals can sense when we are in pain………………….
    Hope everyone is having a ‘good’ day – thank you all for sharing – knowing that I am not alone is a big deal for me.
    Thank you Kelly – I call this your Warrior Clan because it feels like you are like (geez brain freeze here) Robert the Bruce??? Anyway Mel Gibson’s character – I can just see you leading the way yelling “Freedom”!!!!

    Reply
    • April 7, 2010 at 10:02 pm
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      Pamela, Looked it up to be sure. Robert the Bruce, yep. Can’t wait to get a sidekick (puppy) again someday.

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      • April 7, 2010 at 11:36 pm
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        Hi Kelly – It really helps that my cat is almost 10 years old so he is not into things and not too feisty! A little off topic in this set of comments but I don’t have the energy to navigate further – I went to the NY Times page that you put on your bulletin board – it was a great read, in fact it got me through a REALLY bad afternoon. For the first time my voice is affected – and my eyes as well. I am fighting to get my spirit back – I don’t ever ask “what else can happen” anymore because I usually find out!
        Thank you and bless you!

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  • April 7, 2010 at 2:20 pm
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    Thank you for sharing what we’ve all felt at some stage. There are bad days and not so bad days. Hope the not so bad days come back soon. I find that just accepting that a bad day (or two or three) is here and a not so bad day will come back helps me.

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  • March 1, 2011 at 8:17 am
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    This is a great post! When I hurt, I get very quite. I have now shortened my comments about my pain to, “My RA is giving me hell”. Any more detail than that seems like whining. Some of my friends and family get what that means, others still don’t after more than ten years. The most important thing is I now get it and when my RA is giving me hell, I switch to a lower, slower gear.
    If that is a problem, it’s someone else’s not mine!

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  • March 1, 2011 at 1:32 pm
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    It is as you said Kelly- what to do with pain? Don’t want to whine- want to be a good example- a real conundrum. I have been battling with that question for some years. I still have no answer. Pain with this disease can be ever changing and often times difficult to explain. The monster flare- which also seems to be different pain different joint- the pain can be so excruciating, you become quiet, tears flow from one eye, you try to relax your muscles, but tense nonetheless, waiting for the medrol to kick in, praying for the 3rd morphine shot to please please give you even 30 seconds of relief. Then 2 or 3 days later, poof that pain is but a memory. It leaves no visible mark. Slowly you begin to move, life takes over. The washing machine becomes the priority- pulling the knob out becomes the moments challenge. You are more concerned with the “state” of your daily life that went on without you. You lament the lost days- hours and minutes. Sometimes feeling as if you just went backwards-you try to scramble to catch up. You know that you have no control, you know you shouldn’t scramble. You over-do it again. I believe it is because of the desire to just be “normal” if only for a moment- again.

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    • March 1, 2011 at 2:10 pm
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      This is so well written, Brenda. You’re a good writer.

      I guess what I’m learning is that RA can vary not only by patient but also over time in the same patient. It was a revelation when that was said to me & now it’s really sunk in. I’m still waiting for the day this becomes a memory. For many years, it was like that, but for 5 solid yrs now, it’s been at the same level w/out any reprieve so there is no daily life catching up or scrambling. My desire is so strong to be normal for only a moment as you write. I am hoping for that day & I think I won’t ever give up that hope.

      Reply
  • March 1, 2011 at 3:38 pm
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    I’m to the point right now where I’m considering sneaking off to the bathroom at work because the pain is pushing me to the point of crying. Also, I can’t help but feel invisible – or like the pain I’m in is invisible.

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    • March 1, 2011 at 4:15 pm
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      I wish there was something I could do Mary. I just wanted you to know I heard you. It is so hard to feel that bad & be in front of others.

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  • March 1, 2011 at 4:35 pm
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    Oh, Kelly….I DO understand….and the past few weeks have been like that for me…especially the past few days. Dr. doesn’t understand WHY I have so much pain…even lying down hurts…have to switch positions. And, I agree….telling my family and friends truly how I feel is so hard…I was told just a few days ago by a family member “I wish I could hear that you have one good day”…yeah…I wish I could say that, too. Anyway….praying for you, and thanking God for you and this blog….God bless you, Kelly! ~Sue/ Pgh, Pa~

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    • March 1, 2011 at 4:56 pm
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      Thank you Sue. Thanking God for you too for being there. & I almost never answer the question “how are you?” for that reason. I want to give the same answer every day for 5 yrs now: “a little worse.” Only other patients who have also had these times can appreciate what that means or seem equipped to handle that truth. I have heard myself lie to avoid an argument, saying oh I’m fine; so I mostly do like others here & stick to very short basic facts.

      Reply
  • May 10, 2011 at 12:48 pm
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    I have had RA for over 30 years. Mild to moderate, really. I’m glad that’s all, because it’s quite enough. Enbrel didn’t work; Humera worked, but I started getting infections. Now during the winter, I get constant flares. I live in a dry climate on purpose, because I am so affected by humidity. My husband, his mother and his sister have pretty much thought RA is all in my mind. I tend to give them a cold look. My husband is finally coming around and opening things for me. Most pain meds make me sick. I dropped my rheumatologist because he left a PA in charge and went off to other interests. My MD works hard, and I like him. I could be worse off and probably will be if Medicare gets cut again.

    Reply
  • March 19, 2012 at 7:15 am
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    I stumbled across this blog while looking for relief from my RA pain. You are right, no one understands, no one can imagine. I thought I was the only one who experienced the “quiet” of the pain. My bed, quiet and most recently some tears as well. I can’t pick up a cup of coffee with either had, it feels like I am walking on sharp pebbles, can’t turn my neck, pick up my grandchild or attend a function without the “quiet” being present. Some take it as being “unsocial”. I use it to survive.

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    • March 19, 2012 at 7:47 am
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      These are hard to imagine if you haven’t experienced them. But having been there myself, I read your words and I’m right there. I hope your doctors will give you something that relieves your pain. We use many things – hot baths, ice on joints, rest, anti-inflammatory meds, pain meds to try to reduce the pain. The best thing is to find a disease treatment that works for you, but we are not all that lucky yet. Hope of that helps me survive too Dena.

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  • March 19, 2012 at 9:25 am
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    I COMPLETELY understand where you are coming from. I don’t have a very high pain threshold. I have one son, which I gave birth to using an epidural. I have NEVER experienced pain like the pain of RA. I can’t walk. I can’t scratch my back. Almost on a daily basis, I even need help getting dressed. I am 30 years old and it is the most embarrassing thing I have ever had to endure. My family has no idea what RA pain is. My Grandmother just tells me to “get over it” because she has arthritis and she keeps going. When I try to explain that RA is completely different, I just “don’t know what I’m talking about”. So, like you, I remain quiet. The quiet has engulfed my life. I used to be loud and outspoken, but now, you won’t even know I’m in the room. I am so tired of suffering in silence, but no one cares enough to try and understand RA. You’re not alone in your pain or your emotions. I hope at least knowing that helps you cope with the hell that you live through daily.

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  • March 27, 2012 at 9:16 pm
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    is it possible for RA to affect the face ie jaw cheek bones and such. can/will it affect the neck? i saw your link, but my dr says “NO WAY. it will not affect the neck” i want to get the best care that i can. i am just beginning my journey though according to my 1st dr my RA factor is very high. i dont know what everything means & i am trying my very best to research as much as i can. as a CNA i do have some medical back ground. but some of this stuff, i just dont understand!!!!

    Reply
    • March 27, 2012 at 10:16 pm
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      You can click on the Tag called RA Spine to read some articles about it – there are journal articles quoted with information about that – I do not know why your dr is saying that – is he a rheumatologist? I hate to say it but that is sad he is so uninformed. You could print out some of the more scholarly-looking articles to show him – – suggest that he google it. It is extremely common. I know numerous people who have had surgery as a result.

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  • December 15, 2013 at 2:48 pm
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    Regarding RD pain:
    After 3 years of trying different meds,cutting back on my work schedule(I work 12 hour shifts in a busy ICU as a nurse), I am finally starting to see a light at the end of the tunnel. I don’t know if it’s the Lyrica or the Simponi but I am feeling like a person again most of the time. People at work tell me I’m “like a different person” and “You must have been really hurting because the change is amazing!” Yeah, I really have been hurting. This is an example of HOW MUCH PAIN PRD have that when it’s relieved the change is “AMAZING ” and “LIKE A DIFFERENT PERSON”

    Reply
  • December 17, 2013 at 7:11 pm
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    After posting the above I decided it was time to try exercising again. I was feeling so good and I used to be in just good shape. I would do back to back aerobic classes and then hit the weights. I pushed myself (operative word “pushed”)to do 25-30 minutes of fairly low level elliptical work for each of 4 days. Well, Hello Mariam! Haven’t you been listening to anything here? I’m paying for it now. This disease is always just lying in wait, ready to leap up and knock you down.BEWARE!

    Reply
  • December 24, 2013 at 6:07 pm
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    This is just what I do too, go quiet when I’m in pain. People around me applaud me for not complaining, so they seem to be happy with the situation.
    I get even quieter at moments like these when the pain touches my soul. It and other disease symptoms prevent me travelling to see family, and from enjoying the lovely events and sights of Christmas, so at this time of year I feel particularly sad – and very, very quiet outwardly.
    The noise inside is deafening at times, though!

    Reply

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    Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.

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