Rheumatoid Arthritis, Joint Pain, and Truth

A fairy tale ending to Rheumatoid Arthritis joint pain?

My phone rang Friday afternoon. The cheerful woman on the line encouraged me to “Enjoy a life Free of joint pain.” She said for $59.95 she would send me a product “Guaranteed to reduce inflammation and rebuild your joints.” After only eight ounces per day for one week, she promised I’d see a difference.

Let me tell you why she called. Last week, I noticed an infomercial with a woman who claimed to be a doctor selling a product called Supple. When I heard them use the words Rheumatoid Arthritis, I began scribbling down notes. When they gave the 800 number, I called.

After I listened to the sales pitch, I started asking questions like “How can this help cure Rheumatoid Arthritis? How can you use the word cure with an incurable disease?” We talked for about 20 minutes. I posted some of her claims on my Facebook page. I maintained a smile, but I pleaded with her to consider that she might be misinformed about what Rheumatoid Arthritis is and whether their product could end Rheumatoid Arthritis joint pain. Some of it was actually quite funny.

Rheumatoid Arthritis joint pain is not polite

So, I guess they called back this week to see whether I’d come to my senses. This second woman was even more insistent than the first. She said Supple “will help Rheumatoid Arthritis. Yes, that is a severe arthritis, but it does work! It’s high quality glucosamine…”  I asked her why my doctor doesn’t prescribe those ingredients to me. She said she didn’t know. Well, I do.

Most of you have never met me in person. Maybe you don’t know that in a conversation, I usually won’t bother to disagree with anyone. People don’t need to be corrected; they need to be listened to. However, the issue of Rheumatoid Arthritis joint pain is different.

I’d like to be polite and defer to people who think that Rheumatoid Arthritis is really no big deal, but I can’t. I’d love to be able to be gracious and let them have their way, but my joints won’t let me. I’ve tried to get into their reality where Rheumatoid Arthritis joint pain is mild and curable, but I can’t find my way to Oz.

Looks like I’m stuck here in this world where I can barely move and every joint is screaming in pain. I challenged the woman at Supple to read some of the comments on this website to see if that changed her mind. It’s the same way I’ve challenged the editors at Woman’s Day magazine to just consider the facts.

I can’t do very much physically any more. I push myself as far as I can just to fold a few pieces of laundry or wash my hair once a week. But, there is no way that I will back down on the reality of Rheumatoid Arthritis joint pain – I don’t have that luxury. Someone else is going to have to defer this time.

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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/

32 thoughts on “Rheumatoid Arthritis, Joint Pain, and Truth

  • June 14, 2010 at 8:47 am
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    good for you for letting them have it…. unfortunately, they won’t learn.. until it’s them.. their kids.. and their loved ones.. and even some of those types won’t learn either!!

    im shocked they called you back!!!

    Reply
    • June 14, 2010 at 8:53 am
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      LOL! They called me back because what they care about is money & they’d like to sell me some! I’m not really trying to let them have it. I just have to insist I’m right when it comes to this. I have no choice. 😮

      Reply
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  • June 14, 2010 at 9:10 am
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    Kelly I have been down that road,tried everything vitamins fish oils anything that was offered ME!! nothing helped ME..until I was introduced to Prednisone I now can walk a little better but 27 yrs of this crap I struggle everyday to do simple task like make a bed ,brush my teeth, wash my hair fold clothes,shower,shop for food, the little things that people just take for granted they just don’t get it,.this is life changing and awful to live with.
    Hope is what we have to go with.HOPE FOR A CURE.for ME a cure wouldn’t even help ME now the damage is done.I need new joints everywhere.I will not b sold on this kind of stuff.So glad you stood up us..thank you xoxox gentle one Roxie

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    • June 14, 2010 at 9:37 am
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      of course you won’t be fooled Roxie. Your joints wouldn’t let you be!!! :heart:

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  • June 14, 2010 at 9:43 am
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    When I was diagnosed with RA, my doctor told me one of the biggest disservices done to RA patients is to put arthritis in the name. It is an auto immune disease and not skeletal. It is in the same category as MS, MD, HIV, etc., not osteoarthritis, degenerative arthritis or any of the other 90 or so forms of arthritis. People understand osteoporosis is different, but it is a skeletal problem, too. The difference is arthritis is not in the name of the disease. We have to keep educating people and work with our doctors or medical professional, not well meaning friends, the internet, or someone on the phone with a “miracle cure.” If it was such a miracle, they would be rich and not have to hire telemarketers.

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    • June 14, 2010 at 10:01 am
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      great point Jan about the miracle. The name is a sore spot for so many – I can’t believe it has stuck for so long. I’m told it’s due to the Arthritis Foundation. Do you like my latest suggestion: Rheumatoid Autoimmune Disease?
      PS: so impressed your doc realizes this! I’ve had a doc say this: “People know all they need to know about RA.”

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      • June 23, 2010 at 4:01 am
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        I would have slapped the doctor most likely! And her doctor couldn’t be more right…it’s not “arthritis”

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        • June 23, 2010 at 9:37 am
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          I’d have to say that this is the most frequent point people have made to me about RA in the last year.

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  • June 14, 2010 at 10:48 am
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    Kelly, Thank you, once again, for being our advocate. I would have quickly said “No, thank you” and hung up on them but you took the time to TRY to educate them, or at least make them think. I agree, they’re just interested in making a sale.

    Reply
  • June 14, 2010 at 12:30 pm
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    Thank you once again Kelly!
    I find myself much more likely to try to educate the ignorant today than I was even 6 months ago.
    I, like you, feel compelled!

    I recently had a conversation with a gal trying to sell me one of the “miracle juices”. AGGGGHHHHHHHH!
    She told me she had fibromyalgia and it worked for her.
    I explained that I too have a diagnosis of fibromyalgia, and compared to RA, it was like having a cold vs. cystic fibrosis.
    She smiled walked away and I haven’t heard from her since.

    We need to support each other, and I thank you for your bravery and determination. I want to be just like you when I grow up! Love and a very gentle hug : )

    Reply
  • June 14, 2010 at 1:20 pm
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    I tried many snake oils before I was diagnosed with RA since my doctor said it was just osteoarthritis. I remember thinking “If this is OA, then why is it taken so lightly, this is debilitating” So that’s when my journey started with alternatives. Food elimination diets, multiple products from the internet, testing my water, checking for radon and strong electromagnetic fields, copper jewelry, switching to all organic diet and elimination of all chemicals inside and out. You get the picture. The monster pain, stiffness and fatigue marched on, unscathed by my efforts and miracle cures from the internet. Ahh, I wish I would have spent my efforts on seeking a second opinion instead.
    I’m liking the Rheumatoid Autoimmune Disease. So RAD!

    Reply
    • June 14, 2010 at 8:06 pm
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      Too common a story Ronda. too much wasted time. Too many docs who don’t know what RA looks like. Hence our campaign. Our RAD campaign! :soldier:

      Reply
  • June 14, 2010 at 3:43 pm
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    Kelly, I saw the same infomercial about a month ago….i was quite mad about it. I called the FTC and filed a complaint, for false advertising and predatory advertising practices.

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    • June 14, 2010 at 7:53 pm
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      Great job, Katie. I never thought of that! I wonder if anyone at the FTC knows what RA really is so they can apply the law!

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  • June 14, 2010 at 4:41 pm
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    Thank you Kelly for putting up with and talking back to the Supple people. I get so angry when I see them on TV. I saw it once and listened and screamed at the TV. I wish I did what you did and called. Although I doubt I would have been as polite as you. LOL

    Reply
    • June 14, 2010 at 8:16 pm
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      I only wish I could win one of them over. But if they hear the truth again someday, they may remember what I said. ???

      Reply
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  • June 14, 2010 at 6:26 pm
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    I love this site, and your articles….you tell it like it is!! My husband is one of my greatest supporters and tells people right up front how I have an autoimmune disease…he cannot stand how most of the time people poo-poo it as arthritis and not that big a deal. I think your idea for renaming it “Rheumatoid Autoimmune Disease” is perfect!!

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    • June 14, 2010 at 7:54 pm
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      Hi Roberta, Please tell him thank you for us all. That’s a good guy!

      Reply
  • June 15, 2010 at 2:16 am
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    good 4 u Kelly! What really scare me is all the junk cures we are tempted to use and wear out our organs. Many with liver damage may have no hope in withstanding the medication trials that an old-time RA patient needs to withstand treatment.

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  • June 15, 2010 at 10:55 am
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    kelly.. thank you.. for you are one of us..and you are an inspiration with your demeanor and your knowledge and will…
    the one positive thing i have found about RAD is your spirit. thanks for representing..(as the kids say lol)

    Reply
  • June 15, 2010 at 11:53 am
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    kelly… i think the acronym RAD is a great idea… not so misleading ..i experience all the frustration of the “arthritis” label that we all must feel at some time or another….
    how about the supraordinate of RAD=Rheumatoid Autoimmune Disease Complex=RADC
    subordinates could be RADCnm with the nm being neuromuscular for fibromyalgia diagnosis or RADCf (if we want to keep the “names” we already have for each of the diseases
    another subordinate example RADCa for RA
    another RADCs for sojourn(spelling)
    and etc etc thus bridging the gap between the clinging onto the current “names/labels” and moving to the real idea that it is a complex group of diseases that are autoimmune…

    whatcha think???
    all bases covered lol wams 😉

    Reply
  • June 15, 2010 at 2:05 pm
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    The one thing that irritates the living daylights out of me is those who THINK they know better how I fee, what works & what doesn’t. Like you, some days getting my hair washed is all I can muster. On others, I’m good for a trip to the wallyworld or to mow my lawn. But, every day is a challenge in some form or other. RA is a nightmare revisted over and over daily. People who sell snake oils disguised as cures really peeve me. Seriously, do you not think we’ve already read up on, tried or asked???? I love your blog and your writing!! Tazzy

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    • June 15, 2010 at 9:16 pm
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      Hi Tazzy,
      I have to agree w/ you. This is not an angry blog & I wasn’t angry on those phone calls, but there is nothing more insulting & infuriating than having someone tell you something would help or what you should do when they can not know how you feel. None of these people who do this bother to ask me anything about how I feel or what hurts. they don’t wanna know. :-/

      Reply
  • June 16, 2010 at 2:19 pm
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    Then there are my aunts who say, oh, everyone gets arthritis at some point. They have some OA and buy into the chiropractic exercises and still sleep with magnets after all these years.

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  • June 20, 2010 at 8:43 pm
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    I tell you what you can do and what you do wonderfully is speak on our behalf!! I never realized how therapeutic sharing your pain with someone who understand could be. I get so charged up when I read something like this, on a day when I didnt care to care. I get a euphoric feeling when someone gives me encouragement and commensurates by sharing their experience,especially when it is something I thought only I had gone thru. Of course Im not that vain, its just finding a RA buddy or buddies, someone who KNOWS the disease because they are living with, getting encouragement and feedback from them is just simply different. WE KNOW that drinking glucosamine is not a cure, because we know there is no cure!! I’ll say it again – YOu tell ’em girl!!

    Reply
    • June 20, 2010 at 9:11 pm
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      :yes: Yes to all of those, Kimberley. It is so helpful to talk with someone else who is walking the same road. “I get so charged up” too by reading comments like yours & knowing what I write matters to someone!

      Reply
  • September 26, 2010 at 4:57 pm
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    Thank you for trying to educate that telemarketer who called. Obviously, she had no clue what RA really is or she wouldn’t have referred to it as severe arthritis. Surely there is a law against advertising some substance over television, the internet, etc. as a cure for an uncurable disease. Any such laws need to be enforced and whatever legally happens to the perp., the head person(s), should be well publicized. I am not as angry with the smucks who are basically pitchmen, as I am for the ones behind the snake oil scam, although they should bear some legal responsibility, too.

    Reply
    • September 27, 2010 at 10:34 am
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      I just thought of it as an opportunity to educate. They don’t do this to cancer patients. :-/

      Reply

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