Rheum Blog Carnival: Pain Relief in Rheumatology | Rheumatoid Arthritis Warrior

Rheum Blog Carnival: Pain Relief in Rheumatology

Hey all! I’m truly amazed and humbled by the blogs about pain relief that I’ve read over the last few days. I hope you’ll read them all. Here’s the original post with describing today’s topic about how to treat pain relief in Rheumatology. We asked about who should treat the pain and when, whether patients have their pain relief needs met and what can be done.

What do we know about pain relief in rheumatology?

Ferris wheel for blog carnivalHere’s a quote I ran into while I was working on the pain relief blog carnival post. It’s from an old editorial by Dr. Till Uhlig in the Journal of Rheumatology called KISS (Keep It Simple Stupid).

“The patient perspective in rheumatic diseases is important, pain being the most important reason for the patient to seek the rheumatologist and the most important area for improvement. Thus, indices of disease activity representing the patient perspective in RA must have a key role when we assess RA and evaluate treatment effects in daily practice.”

If you’re a patient, you might appreciate feeling understood, but we also have an opportunity to learn from the experiences, research, and the treatments of others with regard to RA pain relief. I hope you’ll take your time to visit and comment over the next few days. If you’re a caregiver, you might be surprised what you learn about pain relief needs, options, and approaches. I can’t help but think about how richly blessed our community is and how much of an impact it will make on patients’ lives in coming years.

Here we go! Welcome to the Rheum Pain Relief Blog Carnival!

Elizabeth of Ancient Reptile wrote Rheumatoid Autoimmune Disease Pain Relief. With her decisive blend of logic and enthusiasm, Elizabeth teaches by example, her own and that of her doctors.  She expresses willingness to try various methods for pain relief from a TENS unit to pain patches to massage. And then she explains how her doctors recognize and treat her pain in ways that are workable for her.

The Rheuminator of A Change of Plans wrote Chronic Pain is Not a Symptom, offering fierce and honest insights. Somewhat poetic and suspenseful. Be sure to read this post all the way through to learn the secret of her confidence in her doctor.

Tina of Clear Skies and Sunny wrote I Am Not Superwoman, a post about pushing through pain that never completely goes away. But I soon wandered to her most recent post about picking up prescriptions at the pharmacy. I advise you to do the same, especially if you work in health care.

Carol of My Life as a Traveling Southern Girl wrote What I’ve Learned about Chronic Pain. With this post, Carol thoughtfully guides us to consider our preconceptions about pain. If you’ve ever wondered from the outside about pain like RA pain or thought you’d never be the person who needs pain relief, consider a voice of experience.

Cassandra of Beauty for Ashes wrote Cold and Hot… Pain Relief? about using heat and cold to relieve angry RA pain. It apparently gets complicated when the seasons change.

Melissa of A Gracious Calm wrote Pain is Bad Y’all. She asks: “What’s the answer to my pain problem?  To not have RA?” I wish there were an easy answer. She writes: “I am willing to do my part to stop the pain; I just don’t know what else I should be doing myself.”

Neen of Arthritic Chick wrote Full Body Mega Flare about how she reacts to RA pain that gets even worse than the “new normal” of daily pain. She wonders whether karma will help since RA medications haven’t.

Jen of The RA Vegan wrote Talking About RA and Balance: Pain Relief in Big and Little Ways. She shares some of the conversations she has with her rheumatologist as they work in partnership to manage a toolbox of ideas to accomplish pain relief. This is the most enlightened doctor I’ve seen since ePatient Dave’s doctor: “We are working together and I wish all patients had that relationship with their doctors.” Amen.

Jenn of Living with RA wrote Alternative Pain Relief, an instructive tips post.  It contains a list of practical physical methods to reduce or manage pain without medications. My favorite is breathing. I figure if it helped me through childbirth five times, there is something to the practice of deliberate, slow, deep breathing. You’re doing it right if you can feel a difference throughout the body within about 15 seconds.

Lauren of An Unguided Missile wrote Pain Management. I looked forward to reading this one because I’m fond of Lauren, but how does she know how loud I am? (If you want to get the joke, you have to read her post.) Lauren makes the point that she’d rather see several great specialists than one mediocre doctor who tries to treat everything. Her crucial point: “Find doctors who are willing to partner with you and the rest of your treatment team.”

Ashley of A Young Wife’s Tale wrote How David Copes with Psoriatic Arthritis Pain which raises important issues for rheumatology care such as access to pain relief medications and coverage for alternatives such as acupuncture. David has used a wide range of methods for pain relief that we might consider. And don’t we all need an advocate like he has?

Daina of What Is This Mom Thing? wrote For RAWarrior and Everyone Else Who Requested That I Update Again about the pain she endures in spite of treatments for her RA. I absolutely hate that patients are ever told by doctors: You “shouldn’t be feeling this way,” especially about RA pain. It is the elephant in the room, though. It would be nice if pain relief were not an issue because rheumatology treatments worked so well in all patients that pain relief was not needed, but pretending won’t make it so.

Jenna of The Feeding Edge wrote Eleven Things to Try When You Can’t Smile Away the Pain. It’s the list of tips in her “lifeboat” that help her get through pain when pain medications run out. These things can distract or relax, helping the mind to overcome pain and bring a form of relief, when that’s all you have.

Rachel of Putting it ALL Out There wrote RA Pain (Real Agonizing Pain). Find out how Rachel’s husband knew her pain pill had really worked. And what she’d love to hear just once from a doctor.  I have to be honest with you: This post made me cry. But I’m grateful that I read it because Rachel really is putting it ALL out there. And it crystallized in my mind that patient blogs are changing the reality of the culture we live in while we fight these painful diseases.

Terry of Dual Sport Life wrote It’s Just Arthritis. Like most people with RA, Terry is “reluctant to complain” about daily pain from RA. Nevertheless his rheumatologist was truly shocked when Terry confided that he hurts every day. I can’t be sure, but I wonder if the doctor is fooled by the tough veneer patients successfully build because we are so reluctant to complain and work so hard at being positive. Terry’s never fooled me about whether he hurts, but then I speak the language.

Andrea of A Fierce Sunshine wrote Curiosity Killed the Cat: Painful Questions, using impressive descriptions of RA pain like “clip a ligament with meat shears.” Her post makes one of the most important points that can be made with regard to RA: Ask plenty of questions and she gets us off to an excellent start with about 20 good ones.

Jenny of Understanding Invisible Illnesses wrote Pain Relief – Reality for Chronic Pain Sufferers. She advocates “Hope grounded in reality” and then shows us the way. Her post is a methodical discussion beginning with hoping for full pain relief and then taking responsibility for getting as close to that as possible.

Enjoy!

Recommended reading

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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16 thoughts on “Rheum Blog Carnival: Pain Relief in Rheumatology

  • August 19, 2011 at 8:23 am
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    Kelly, I love, love, love this! Thank you so much for making this available to so many and for the opportunity to contribute. I have so much more reading to do, but that feeling that nobody/not many really get it is slipping away. This is some of the best therapy I have had in a long time. We are not alone…

    Reply
  • August 19, 2011 at 1:30 pm
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    I “love” the pain issue, when I’m so in pain i can’t think of the things that relieve the pain I’m so imbued in a pain “fog.” It takes, did you take you NSAID? Did you try ice? Pain makes me forget my sensible self.

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  • August 19, 2011 at 2:21 pm
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    Thanks to everyone for the blog carnival on pain…..great writers and good insight. I also would like one on the subject of fatigue.

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  • August 19, 2011 at 9:34 pm
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    I’m so glad you did this blog carnival and I’m glad to have been a part of it!

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  • August 20, 2011 at 2:08 am
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    Kelly, thanks for putting this together. I know it takes countless hours every week to make rawarrior what it is, thank you for all that you do for the RA community.

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  • August 20, 2011 at 7:50 am
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    Hi, Kelly I to am very glad you did this blog. Pain is the biggest problem with Ra I think. Sometimes I get so lost in my thoughts about the pain and how do I get relief that I can be at work for 8 hours and not even remember what I did all day because in my head Im thinking about the pain and how am I going to make it through the rest of the day with this pain. It controls everything I no longer have control of my life Ra does.

    Reply
  • August 20, 2011 at 9:41 am
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    Kelly again, you do amazing things. These are so helpful in so many ways. There are several I wish I could print and take with me to my hearing before a judge on disability. I am going for my second appeal since filing last Nov. It is so hard to put into words(especially when you are starting to cry)that will get the point across. I can work for short periods at a time. Then I have to rest. Employers frown on that, they pay by the hour and want an hour’s worth of work. Plus if I do physical work, I’ll be down the next day, may be two. Unfortunately even though I explained all of this to my Rheum dr, he did not put it in my progress notes, not even that I claimed this is the way it is. Nope, I had a normal gait and was in no acute distress. (Thanks for the advise on getting your records!) So I have decided no sucking it up for the doc, he is going to get the full picture, as embarrassing as it is.

    Reply
    • August 20, 2011 at 9:48 am
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      Sorry, I neglected to thank every one that participated. Thank you for sharing, I think we all at some point or another nod our head, been there, or tear up in mutual sympathy. Validation, it is a wonderful thing.

      RA, you are not going to beat me, I have friends that know, that understand. And that’s more than half the battle.

      Reply
  • August 20, 2011 at 9:46 pm
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    Thanks for including my post, Kelly! I really think pain is a major part of our lives and our docs need to KNOW that! I posted in a comment on another blog that we need an “Arthritis Suit” that people could put on and wear for a day that would make them hurt in odd places all day. But, you know what? I’ll bet no one, not even the rheum docs and PCPs would try it out. But I can dream…
    Love
    Elizabeth

    Reply
  • August 21, 2011 at 11:15 pm
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    Thanks for this post, Kelly. I’m still working my way through everything…and getting lost in all the other blogs! I thought I wasn’t alone before, when I had rawarrior to run to…but WOW! There are so many more! (I know that on your fb page you have allowed others to post links to their pages, but I’ve never taken the time to wander. Shame on me.) I’m going wandering again…

    Reply
    • August 22, 2011 at 12:12 am
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      It’s very late here, but someone on facebook asked me the other day – looking for someone with a name that’s part of your email. So… I have a strange question – did you meet someone on a plane a while back? It might not be you, but just in case I had to ask.

      Reply
      • August 22, 2011 at 2:05 am
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        I don’t think it’s me…last time I was on a plane was over a year ago. Good luck helping in the search.

        Reply
  • Pingback: How David Copes With Psoriatic Arthritis Pain « A Young Wife’s Tale

  • August 24, 2011 at 9:25 am
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    Thank you for organizing all the posts. I have had RA for 3 years but it was misdiagnosed until a few months ago. Chronic pain is a sore subject with me (pun intended) I am allergic to all of the narcotic pain meds and cannot take Trammadol due to its propensity to increase seizures) I was able to tolerate Darvocet, but thanks to a funny little twist of fate, that has been taken off the market. So I am left taking tylenol – which is a terrible waste of the few dollars I spend on it. I also use aspercream but as I experience pain in so many joints, I practically bathe in the stuff.

    Reply
  • September 3, 2011 at 6:41 am
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    Thank you for including me, this was my first blog carnival and I loved it!

    I also really love that your compilation reflects SO many view points and ideas. I hope you get a lot of satisfaction knowing what you work on with this site is so worthwhile to so many:)

    Reply
  • October 17, 2016 at 10:09 am
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    Interesting presentation of the “carnival” well written author. Thanks.

    Reply
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