20 Replies to Things Not to Say to an RA Patient | Rheumatoid Arthritis Warrior

20 Replies to Things Not to Say to an RA Patient

Replies to things not to say to an RA patient (UPDATED)

20 Replies to Things Not to Say to an RA Patient

Every day, I hear from many people living with Rheumatoid Disease. This post about things not to say to an RA patient was a response to a request from a dear reader about one of the most popular posts on the blog, 20 Things Not to Say to a Rheumatoid Arthritis Patient with 2,640 4,661 likes as of tonight.

She asked: “I love this post. Have you ever thought of writing a post with how to respond to these comments? I don’t just mean the snarky replies we want to say, but reasonable answers that will hopefully shut people up?”

This is my best shot, but I’d love to hear your replies too. How do we respond to things not to say to an RA patient? Remember, the name of the game is not to be nasty. Hopefully, we can still make it clear that Rheumatoid is a serious disease with arthritis as its most well-known symptom.

20 Replies to things not to say to an RA patient

  1. Aren’t you feeling better yet?
    Some days are better than others. I know where you can donate to help find a cure.
  2. You’re not old enough to have arthritis.
    No one of any age should have to suffer with a disease like this, especially the children who have it. I guess I’m blessed for the years I grew up without it.
  3. Oh, I know; me too.
    I’m sorry if you don’t feel well. But if your doctor didn’t prescribe chemotherapy, I doubt you have the same diagnosis.
  4. Exercise would really help you feel better.
    Regular exercise didn’t keep me from getting sick. I really miss the things I can’t do anymore, like tennis, running, & swimming. Or washing my hair, walking my dog or ____.
  5. You don’t look swollen, sick, or ____
    Thank you.
  6. Have you tried counseling? Maybe you’re just depressed.
    Part of the reason I’m not depressed may be that I did seek counseling after receiving this serious diagnosis. And I have a community online who understands. That helps me to accept it.
  7. Why do you walk so funny?
    I’m not sure; it may be the damage to my hips or knees. But all of the joints in my ankles and toes hurt so much today, I can’t be sure.
  8. No, it’s not heavy. Here, hold this.
    That might not be a good idea. I do drop things.
  9. Have you tried the blue stuff?
    I’ve tried almost every color of medicine and cream you’ve heard of. If your blue stuff successfully treated RA, it would cost a lot more.
  10. You’re just feeling achy or referring to the “aches & pains of arthritis.”
    Usually, RA pain is sharp so patients often compare it to an ice pick or a knife.
  11. Why didn’t you try glucosamine (or Omega3 or gluten-free…) instead of that medication?
    I actually do take some of those supplements, but they don’t treat my RA.
  12. Just drink this juice. (Or eat blueberries or cherries…)
    I would have to drink several gallons of that juice to get the temporary anti-inflammatory effect of taking one Advil. I take four Advil every few hours.
  13. Is that your handicapped parking tag?
    Yes, sometimes I can walk to get into a store, but I have a hard time making it back to the car.
  14. You just need to lose some weight. (Or gain weight!)
    Thin people and heavy people both suffer from RA. It is a wasting disease, so eating well to be a healthy weight is a real concern, but it won’t make the disease less harmful.
  15. I’m glad you’re better now.
    I wish you could see how I really feel, but not as much as I wish I really were better now.
  16. At least it’s not cancer. It’s not like it will kill you.
    Some cancers do kill more quickly than RA, but RA has a similar mortality rate to some cancers and other serious diseases.
  17. I read about a woman who cured her RA with…vitamin supplements, antibiotics…
    I’m glad she feels better.
  18. You just have a low tolerance to pain.
    I actually have a high tolerance for pain, but sometimes I have less tolerance for ignorance about this serious illness.
  19. My Grandmother had that.
    I’m sorry. At what age did you lose her? Some of my relatives died of RA also.
  20. I used Tylenol arthritis and mine went away.
    Good. If it was RA, it will be back. Unfortunately.

What would you add to the list of things not to say to an RA patient?


Recommended reading

Kelly O'Neill Young

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

113 thoughts on “20 Replies to Things Not to Say to an RA Patient

  • May 21, 2012 at 7:20 am
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    I recently had to miss a day of work because of my RA symptoms. Pure exhaustion, coupled with all over joint pain kept me in bed. I’m an elementary school principal, and happened to miss International Day. One teacher emailed me that she was sorry I was missing the special day and really wanted me to see the parade and everything the kids had prepared. I replied that I was sorry too, but that I was more sorry to have to deal with this terrible disease that kept me in bed all day. I also said that I hoped I wouldn’t have to miss my own children’s special events due to this terrible diagnosis, but sadly, I couldn’t predict that. It was sad that someone who I consider a friend did not consider how I was feeling, only that I was missing out on a school event. It’s this type of stress that only makes my RA flare worse 🙁

    Reply
    • June 3, 2012 at 3:38 am
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      Hi Mona,

      I teach high school orchestra and I know exactly what you mean! I had to miss three days of school in September of this year due to a flare that unfortunately hasn’t completely resolved yet. Because my job keeps me so overwhelmingly busy, and there is no substitute who can actually teach my class, I “tough it out” a lot. I pay for it later. In October, I conducted a concert with scarlet fever. A couple of weeks ago, I took a three day trip with my kids for a contest. The 11 hour bus ride, running all over a university campus, and Six Flags (WHAT was I thinking?!?!) kicked my butt. I have a hard time not feeling guilty for missing school when I’m having a bad RA day, even though my colleagues and administration are supportive. I’m working on that. When I get the “it must be nice to have to only work 180 days a year” combined with the “oh but you’re too young for arthritis” crap I have a hard time not wanting to hit someone! Hang in there, and bless you for being an admin-I know you all work insanely hard!

      Reply
      • June 6, 2012 at 9:07 pm
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        Bless you, Stephanie, for your dedication to our future (today’s kids)! I am blessed to have a summer break (although I only get 4 weeks off, it’s much-needed!!). I, too suffer more from self-imposed guilt being away from campus than anything. I think my health has negatively affected the climate of our school this year, and I can almost not forgive myself for that! I know that God has a plan for the work he has placed me in, and I pray daily to please Him and be the best I cn be for my students & teachers, but it is very hard on many days! I will pray for you, too! Blessings – you are making a difference!

        Reply
  • May 21, 2012 at 8:30 am
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    “Can you tell its going to Rain” the answer is usually yes but I am not a weather rock, and I can tell because it usually hurts more not less……

    Reply
  • May 21, 2012 at 8:45 am
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    This article is terrific. I am going to print it and put it on my refrigerator for all to see.

    Here are a few of mine:

    Is it the weather? Do you find you hurt more in the summer/winter?

    I think I have it, is this it?

    Doesn’t everyone get it after a certain age?

    Did your mother have it?

    I could go on and on, but I don’t want to take up your entire blog.

    Thank you. Denise

    Reply
  • May 21, 2012 at 9:21 am
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    Have you tried (enter latest biologic name here) it cured my friends friend. The people in the commercials look like they are doing fine.

    You know (enter famous persons name here) has that and they just keep going.

    My (enter relative here) has that, your hands don’t look as bad as theirs.

    Oh RA doesn’t affect your eyes, you are just having a migraine. ( like a migraine is better, yeesh!)

    Reply
  • May 21, 2012 at 4:26 pm
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    Thank you for this article, I am going to carry a copy of this one in my purse to refer to when people make comments!

    Reply
  • May 21, 2012 at 4:32 pm
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    I just got this one yesterday, “You take all those meds JUST for RA?”

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    • May 22, 2012 at 5:21 pm
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      @Judy M

      I get that one too!!

      Reply
    • September 17, 2012 at 7:28 pm
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      I tried to explain why I was hurting and taking some many meds. The person told me that I just don’t need to take ANY meds. If they only knew what we go through.

      Reply
  • May 21, 2012 at 6:18 pm
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    Have you tried eating paleo, avoiding dairy, gluten, nightshades, etc.?

    I’ve spoken with nutritionists, and no studies have shown diet cures RA. However, an inflammatory diet seems to help, so I’m trying to concentrate on fruit & vegetables, good protein, and healthy fats. Sometimes fatigue makes preparing superior food difficult, so if you are offering to help, thank you!

    Reply
    • May 21, 2012 at 8:02 pm
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      hehe, I like that. 🙂 Ask them if they can bring a healthy meal some night when u can’t move.

      Reply
    • November 2, 2012 at 4:58 pm
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      I love this one !! I am definately going to use this one !! Love you girls XXOO !! God Bless yall !!

      Reply
  • May 22, 2012 at 1:14 am
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    The worse is when your boss makes whining noises when you explain the reason you can’t make it in to work that morning or that day because of the way you feel.

    Reply
    • May 22, 2012 at 8:55 am
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      that is terrible. On top of the disease itself, and the painful symptoms, and the loss of abilities, there is this. It is wrong and I’m sorry.

      Reply
    • September 2, 2012 at 2:36 am
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      or like my boss- trys to get me fired for being sick but does so just inside the law….

      the added stress is so great for my health

      Reply
  • May 22, 2012 at 1:49 am
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    Love the answers , not sarcastic or snippy, which I tend to be. I work with medical professionals who have a hard time understanding not to mention family who just ignore my symptoms. I wish we felt better. But I thank God you and some other blogs make me feel like there is hope.

    Reply
  • May 22, 2012 at 6:14 am
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    My personal favorite was one that my very old aunt sent me from the newspaper. Put 9 raisins in a shot glass of gin. Eat one raisin every day. Your arthritis will be gone.

    Thanks, Auntie. I drank the gin instead. It did make me feel better – for a few minutes. 🙂

    Reply
  • May 22, 2012 at 10:14 am
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    My problem is that everyone seems to forget I’m sick. If I say I don’t feel well, the question is always “what’s wrong”. When I say RA they ask, “you still have that?” If I complain that I can’t seem to get the dishes washed, clothes done, something; I hear the same thing “just do it when you feel better”. No one understands that may not be an option for quite a while. In the meantime, how does the stuff get done? When in a group and fatigue sets in, how do you convince people you can’t go on? The phrase “everybody is tired, just wait until we stop” has been used on me before. I’m not sure if this happens to y’all, but if I become overtired, I get emotional and cry. Just like an infant that gets too tired. How embarrassing! Then people think you just need attention; when all you really need is rest. I haven’t figured out an answer to these questions, but if you guys have some good answers, feel free to advise me. Thanks again for this spot, Kelly. I really don’t feel as alone as I have for the last 3 years(time of FINAL diagnosis)

    Reply
    • September 1, 2012 at 4:52 pm
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      Anna, I feel the same way. The fatigue has really been getting to me lately and I can’t seem to get anything done, but I don’t see an end in sight…Things will just have to remain undone.

      Reply
    • December 8, 2014 at 1:42 pm
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      Anna

      I get the same thing and react the same way. My tears are interpreted the same and it is so frustrating!!! Thank you for sharing, you are not alone.

      Reply
  • May 22, 2012 at 10:16 am
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    I was diagnosed a few moths ago and have already heard some of these things.
    I am 21 years old and I get that my symptoms are not as bad as others with RA, but it can be sad when friends downplay something so serious.
    One of my friends said to me he thought it wouldn’t be as bad if I was more active; it felt like he was saying I got this disease because I am lazy and that if I was more active it would just go away: I wish!
    Just the other day I was telling a friend about the stiffness and lack of movement my wrist and her reply was ‘we already know it’s because you have arthritis’ in a blow off sort of way.
    I think because I don’t look sick people don’t realize how this can and is going to be.

    Reply
  • May 22, 2012 at 3:30 pm
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    I was having a handicapped height toilet installed and my handyman was getting tools out of the truck and a woman that lives catty-corner from me came running over. “Why are you getting a new toilet”. I muttered that this one met disabled requirements. She huffed and looked at me and said “You don’t look handicapped.” It took all i could muster to keep the smile on my face and not say “And you don’t look stupid and insensitive.”

    Reply
  • May 22, 2012 at 7:38 pm
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    Great article. I have a good friend who still will look at my swollen hands and say with great authority ‘It’s water retention’! I’ve more or less given up trying to change her mind…. or I do get very stroppy indeed!!

    Reply
  • May 22, 2012 at 9:46 pm
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    Great article. I read it today to my coworkers in the office, they kind of laugh with me because many of them make one or two of these comments about my RA now and then. Although I liked it I think the answers are a bit sarcastic in order to be share with others that have not idea of what we have to go through every day. Sometimes I have the tendency to be bitter in my comments and answer with sarcasm when one of these comments came across, especially when I am in deeper pain. To help people understand arthritis is not easy, but I see how a positive approach can make a difference. I would like to put theses answers in a more positive way and share them with as many people as I can. Thank you!

    Reply
  • May 23, 2012 at 5:19 pm
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    I am fortunate to have wonderful friends who seem to understand and help me with curbs, etc. when they know I need it. I wish when we go to lunch that they would stop trying to pull out my chair though. Almost dumped me on the floor last week. It seems that I can never go anywhere alone that some stranger doesn’t rush up to me and say “Do you need help?” I know I walk funny but I am still on my feet. I know they mean well but why do they think I am out alone if I need help. Some strange man tried to help me into my car once. I don’t think I was particularly gracious that day.

    Reply
  • May 23, 2012 at 6:43 pm
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    I have RA and each of these questions were thrown at me at some point in my 16 years of suffering with RA.

    Reply
  • May 23, 2012 at 10:17 pm
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    Love #18!

    I recently found out that more people under age 65 have arthritis than people over 65. Might be a good answer for #2.

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    • May 23, 2012 at 10:33 pm
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      what an interesting factoid! thanks. where did you learn that?

      Reply
  • May 24, 2012 at 7:09 am
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    From a dental hygenist yesterday:” I prefer not to take any drugs” Well it it is great for you that you have that choice, I do not!

    Reply
    • May 24, 2012 at 10:37 am
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      I have heard that from a few medical professionals. Heh, I prefer a lot of things too. LOL. I prefer to not have RA. 🙂

      Reply
  • May 24, 2012 at 2:42 pm
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    I had a friend tell me… Oh, I was diagnosed with that too. This finger is rheumatoid, this one is osteo and these two are rheumatoid… Mind you she was supposedly diagnosed 20 years ago and was not seeing any doctor or taking any meds…

    Reply
  • May 24, 2012 at 7:45 pm
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    Answer to #1: I have good days, bad days, & in between days.

    @ss_sunset on twitter

    Reply
  • May 25, 2012 at 6:29 pm
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    I finally rejoined the work force three weeks ago. Before you guys start getting excited, I’m still miserable and in pain and have been shutting my office door to quietly cry when it becomes too much. However, those student loans won’t pay themselves off so it is grin and bear it time. I finally fessed up to my coworkers last week and had my first “what on earth do I say” moment. Generally people who give me crap are strangers who simply do not know any better and do not care about me at all. They are easy to shrug off.

    This time though it was one of my new coworkers. She is really sweet, nice, and genuinely caring. She specifically came into my office to tell me about this book she read about with a chef who “cured” his RA with a “special” diet. It was a very odd sensation. I didn’t know what to say. Any other person I would have been straight forward about that stuff being a total falsehood and very offensive, but I couldn’t bring myself to say those things to her because I knew she really just wanted to help. Instead I just nodded, smiled, and thanked her. I’ve been wanting to talk to her about it ever since, but can’t think of how to bring it up or what to say. This gave me some ideas though.

    I don’t want to have a talk with her about it because I’m angry or upset or sad–even though I am all of those things. I just know that I’m all of those emotions at the state of the world we live in and not her. I just want to have this talk so that she can better understand that RA can’t be “cured” even though it can occasionally (O-C-C-A-S-I-O-N-A-L-L-Y) go into remission. I want her to know that I appreciate her kindness even though it ended up back-firing and making me feel awful. Thanks for the tips Kelly.

    Reply
  • May 26, 2012 at 11:42 am
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    What’s a good response to a husband who thinks I should be able to clean the house without a problem? He got rid of the cleaning crew we had coming in every two weeks because they were “too expensive” and that “four people should be able to clean the house,” even though two of them are teenage boys, one of whom leaves for college in August. I am in such pain after I try to clean just the kitchen that I need a Lidoderm patch and to go to bed.

    Reply
  • June 11, 2012 at 12:47 pm
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    Do you need to go on anti-depressants?

    I get this one from loved ones and even my doctor has mentioned it to me. They tend to say it when I confide my anger, sadness, or fear about my RA. All feelings which I think are justifiable in the face of such a horrific disease. I’ve given up trying to talk about how I feel regarding my RA because everyone seems to think I should be moving through life as happy as can be and that me feelings aren’t justified. I am not depressed, I am happy with who I am and where I am going in life (In fact I’m probably happier in that sense now than before my diagnosis). But I think that once in a while I should be allowed a “Why Me?” tirade without being told I’m depressed. Plus,I already take a billion different kinds of medications, as if I want to add even more to the list!

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    • June 23, 2012 at 8:51 pm
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      I agree, expressing feelings that are perfectly reasonable in our circumstances seems like a healthy thing to do!

      Reply
  • June 12, 2012 at 8:16 am
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    Yes! My RA developed insidiously, with lethargy, pain, and malaise, and I was treated for depression. It made sense, since symptoms of major depressive disorder are nearly identical to those of sickness behavior, caused by circulating pro-inflammatory cytokines as those seen in rheumatoid arthritis.
    While antidepressants helped give me some energy, they probably delayed more specific diagnoses, since it was several more months before I made an appointment with a rheumatologist. Even then, I expected him to tell me I had osteo-arthritis and fibromyalgia, and to exercise more and lose weight, which I had heard before.
    It was repeated high anti-ccp blood test results that led to the RA diagnosis, and high SSA blood test results (with repeated parotid gland swelling, dry eyes, and dry mouth) that led to the Sjogren’s diagnosis.
    These diagnoses gave me hope, which relieved some of the depression (duh!). However, the reality of living with these diseases does get me down sometimes, especially since none of the DMARDs I have tried have helped yet, and the fabled window of opportunity is slowly closing.
    If anti-depressants cured this disease, wouldn’t we all be taking them?
    I’ve found it is better to relieve demoralization “by mobilizing existential postures of resilience, such as hope, agency, and communion with others.” Here’s a good article – http://focus.psychiatryonline.org/article.aspx?articleid=53104
    Thank you, Kelly Young!

    Reply
    • June 15, 2012 at 10:46 am
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      The article is amazing! Thank-you for sharing, I am studying to become a child and youth worker and there is so much discussion on how to build resilience in youth facing adversity. Resilience is so important to our mental health.

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    • June 23, 2012 at 9:12 pm
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      Hi Sandra,
      Thanks for the article. I’ll read thru it.
      Knowing a reason for the symptoms and that treatment may be help can bring hope in itself – of course. It just seems so obvious to me that if people suffer and their suffering is “denied” or not identified, it makes them feel hopeless and depressed.

      Reply
  • June 13, 2012 at 7:12 pm
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    I could relate so well to every word. Your responses, perfect.

    Reply
  • June 14, 2012 at 3:49 pm
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    The best one a doctor (no longer my doctor) said to me was, “I don’t know why being in constant pain would make you depressed.”

    And he said it with a straight face.

    Reply
  • June 19, 2012 at 2:51 pm
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    Have already lost two sisters to the iatrogenic atrocities they were subjected to by their doctors. They both were taking at least 14 medications and developed brain tumors. They didn’t die from the RA – they died from the treatment.

    Now, I have a best friend who has RA as bad or worse than either of my sisters had it. My friend is using nutritional methods to treat her condition and is having great success. She is using some rather unorthodox, nutri-dense foods, very few supplements. I’m sorry – Omega 3 can help, but it won’t solve the problem. She is making her own chicken and beef broths (with the gel and not throwing anything away during cooking). She is using raw milk and her own homemade butter. She is making sure she gets TONS of turmeric everyday (she doesn’t like the flavor so she puts it in capsules though). She is taking fermented cod liver oil. She is eating totally homemade fermented foods like kefir, yogurt, even homemade fermented fruits and veggies (think sauerkraut and pickles). She makes and uses only sourdough bread products from a starter made with organic potatoe water.

    She walks 2 – 3 miles daily, carrying sand filled balls in her hands, and works her arms. She sits with palms up periodically during the day to open the chest cavity while she does breathing exercises. She has a series of stretches she does every morning. She sometimes swims a couple of times every week, if possible. She has a full-body massage with reflexology to the trigger points at least once every month.

    It’s fascinating to hear all the stuff she does. I told her to start a blog of her own, but she keeps telling me she doesn’t have the time!! Gee, I wonder if it could be because she’s busy taking care of herself?! She is THE MOST ACTIVE sick person I’ve ever seen. She takes no drugs – actually refuses doctor visits. Imagine that.

    Reply
  • June 22, 2012 at 6:02 pm
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    First, one of my very favorite comments that I hear a lot is, “Oh, I know just how you feel, I’m a little stiff sometimes in morning, too.” I would be beside my self with joy if it was just stiffness. This last remark is coming from a friend of mine that says this to me every time she sees me and she is an RN. The first time she said that all I could think of was, maybe I am over reacting. After a few months of listing to other people, I realized most people have no clue. The more you try to explain the worse theirs gets and in their eyes yours the less painful yours gets. Or at least that’s the way I see it. The other one I loved was from a gentleman that was taking some blood from me for some tests. He suggested that if I jogged it would help. No kidding. All I could do was stare at him, and he kept repeating it, until he finally got the hint. And taking a deep breath and remembered he was just trying to help I stopped staring at him. Don’t help. Also I know I could stand to loose a few pounds and maybe it would help my knees and ankles probably. Has nothing to do with my hands, fingers & wrists.

    Reply
    • June 23, 2012 at 11:15 pm
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      Dear Joanne,
      If you think you want to lose weight, by all means do so. But I must tell you that many people with RA (myself included) are thin and still have the same horrible pain, stiffness, weakness in their ankles, hips, toes, and knees. And exercise (talk, eating, gum etc) has not helped the RA in my jaw. So much more I could say – I just don’t want you to blame yourself one bit for anything that’s RA’s fault.

      And thanks for the funny story about the staring. I could just see you staring and wondered what came next!

      Reply
  • July 20, 2012 at 1:47 pm
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    I broke my foot 2 months ago & didn’t realize it for a couple of days because that pain was minimal compared to the daily RA pain. While I was on crutches, people questioned why I did not stay home with the foot elevated. I tried to explain that it was a mere inconvenience compared with the frustration, fatigue & pain I deal with every day. That was met with blank stares.
    Shortly after that I contracted MRSA, thanks to all of the immune suppressing drugs (which I had to stop taking for 3 weeks). That sent my office into a hysterical whirlwind. The solution was to ban me from the office (despite my dr. indicating that no one was endangered) & force me to use all of my sick & vacation time. As a result, I cannot take a few hours off when the pain or fatigue gets to be too much.
    Despite this, I still hear all of our favorite comments: “I can’t believe you’re limping again”, “why are you so tired all the time?”, “I know, I wish we could work from home too. It would be so much fun”, “when are you finally be better?”.
    Hang in there, warriors!

    Reply
    • July 20, 2012 at 2:50 pm
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      That’s so common & I’ve heard it so many times! It’s just so hard to understand something you can’t see if you never felt it.

      Reply
  • August 15, 2012 at 1:22 pm
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    I just printed this out for my aunt. I have been increasingly ill over the last 3 years, but finally was referred to the university rheumatology clinic, where I was put on hydroxquinine for what “might” be inflammatory arthritis. (I got the standard response that my inflamation was just fat, and that he couldn’t feel any heat on the joints…after making me wait in a room so could mu husband, who is never cold, was about to go find somewhere warm to wait! Still, he gave me something, so that is some progress…I thank you for your articles, which helped me approach him and convince him to reconsider his immediate dismissive attitude.)

    Anyway, I have not been able to work since March. My aunt, who lives in another state and whom I love dearly is very impatient for me to “get better.” She keeps sending me thing or telling me about this or that “cure” and then acts like I am not trying to get well because I am not willing, for example, to go to a for-profit neuro-muscular pain clinic in her town. (That was the latest one…)

    I hope sending her your list may help her, (And me!) I know her heart is in the right place, but it makes my day much worse feeling the burden of the underlying accusation that I am really refusing to get better.

    Reply
  • September 1, 2012 at 1:06 am
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    Two stories…
    Story one:
    About a year ago I received a phone call from my dad. Before he had called I had not spoken to him for about 6 months. He just had to tell me about this new diet he had found. He said it was a cure all for RA (like we haven’t all heard that one before). Not only that, but it could help me lose weight (yes, he is that kind of person).It was called the China study. Well, being the good sport I am I humored him and rented the book from the library and found it
    to be completely uninformed. When I told him I was not interested in it, he told me was sad I had given up trying. :-\
    Story two:
    About a year and a half ago, I had to take a phys ed class for general education requirements at my college. Before starting any activity, our instructor told us to tell him of any health issues. I wrote Rheumatoid Arthritis down on the sheet. The instructor then had us go out to the gym and told us to repeatedly stair step until he instructed us otherwise. When I told him I had better sit this one out due to bad knees – his comments were “quit trying to get out of doing things” and “If that older lady can do it (a woman of about 40 in our class) then so can you.” So I had to force myself to do it and my knees were so angry the next day.
    Just a couple examples of people misunderstanding RA.

    Reply
    • September 19, 2012 at 9:22 pm
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      this is exactly what I’m talking about with some of the types of problems caused by lack of awareness of the disease. I’m sorry you went through those and thanks for sharing them out here as clear examples of how lack of awareness makes our lives harder in unexpected unnecessary ways.

      Reply
  • September 2, 2012 at 6:21 pm
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    “Methotrexate and plaquenil, those are poisons!” This from my pcp the first and last visit after seeing rheumatologist. I contained my rage and let him finish his rant then asked him what he would take if he had RA. After somebacktracking, he had not asked why I was there or why I was taking these drugs, he replied, “then I would take their poisons.”

    Reply
  • September 3, 2012 at 12:50 am
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    I have a beautiful 14 year old daughter who was diagnosed 11 mongs ago with Psoriatic Arthritis, Polyarticular Arthritis, Severe Anterior Uveitis, Severe Plaque Psoriasis and Fibromyalga. Do I really need to comment on how many times she/hears these comments???? People that don’t suffer with this, HAVE NO IDEA or even a clue what an accomplishment it is for people with RA to be able to get out of bed in the morning. I could open a small drug store or put together a book with all the creams, vitamins and articles people have given me and said they used or read and were cured!! I would sell my soul to the devil if a vitamin or cream would cure her instead of the poisons she has to inject or swallow on a daily basis just so she can accomplish what she HAS to every day. She starts high school tomorrow. Keep your fingers crossed!!

    Reply
  • September 8, 2012 at 12:27 pm
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    Really hit this on the head, I was told from family members that i am faking my disability ,that all i need was a little exercise, Even though i have a RA FACTOR IN THE 800,S NODULES on my elbows ,hands are looking deformed ,Sister tells me about this guy with a cane who works, it is hurtful as somedays i say maybe they are right but than comes the flareup and i can’t even get dressed, so happy my wife and children understand,

    Reply
  • September 8, 2012 at 12:34 pm
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    Funny i have a sister who is a RN, and she sends me a picture of some guy taking fish oil swinging on this pole ,so i wrote back and i said i couldn’t do that without RA, She never wrote back

    Reply
  • September 8, 2012 at 6:04 pm
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    It just astounds me to read all of these stories! Just amazing! #1-God bless you! I am a teacher that had to quit 15 months ago because I couldn’t handle the “stress” ( I loved that job, I really did!) and how it affected my fatigue level. To those that mentioned getting weepy when at their worst, thanks for that. Thought it was just me! Love the article!

    Reply
    • September 10, 2012 at 5:58 pm
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      I sat down in the kitchen floor last week with my head on the dishwasher door and cried. My wrists just wouldn’t hold the 9 X 13 baking dish at the right angle to go in. I’ve been better this week, but at the time I was just so tired of everything being so hard. A few years ago when I remodeled one of the upstairs baths I carried a tub up the stairs and installed it by myself, now the glassware in the kitchen is too heavy! It makes you weepy sometimes.

      Reply
      • September 7, 2013 at 12:13 am
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        Michelle, I cried when I read what you wrote. I understand. I am so tired of breaking things I thought I had a good grip on. I even use a plastic coffee cup now! Best wishes to you and may you have a pain-free day soon!
        Best, Caryn Sova

        Reply
      • December 13, 2014 at 8:32 pm
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        Hi Michelle, I’m sending you a gentle hug … and more gentle hugs to all on this site. I cried when I read your post. A coffee cup is too heavy for me most days.

        Reply
  • January 11, 2013 at 8:31 am
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    I JUST posted a page on Facebook for my sister in law who has recently been diagnosed with Fibromyalgia, and possible Lupus. My Mother in law immediately posted under it “go check out LDN therapy, it’s the best thing ever, blah blah blah” I replied to her that it was great, and when it was readily available and approved by the FDA I would take a look at it. Until then, refer to the page that I cited. 🙂

    Reply
  • January 26, 2013 at 3:35 pm
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    I was asked once if my disabled parking permit was for me because I didnt look like I needed it… I said “thank you for noticing I’m having a good day today!” Shut her right up!

    Reply
  • January 26, 2013 at 9:09 pm
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    Just came across this thread and I am astounded at how cruel people can be. And some of the things said “in the interest of helping and caring” amaze me. I, too, have a handicapped parking plaque and although no one has ever said anything directly to me, I have had all the dirty looks when I park and can hear what they are saying to each other about me not looking handicapped to them. I always want to go up to them and say “thank you, I am glad I am looking so well today that you felt the need to comment on it ” – but I never do. I just grab my cane and hobble into the store. I am 61 and I guess thankfully, don’t look as old as some do at 61 – I also try to dress nicely (not necessarily fashionably) and I try to do my hair and makeup when I go out. So I don’t usually look like I am on my last leg, but I DO hurt and every step can be agony on some days. I do hobble when I walk and yet, I hear “but you look so nice, you look so well” over and over again – they have no idea how long it took me to get dressed and do hair and at least some makeup. And for the ladies – not maybe ideal or practical for all of you but the greatest invention for me has been wigs. I struggle so hard to lift my arms (elbows, shoulders, etc) just to dry my hair -never mind if I tried to curl it or did something fancy. When I first mentioned getting a wig, DH wasn’t too sure about that -in his mind he was thinking back to probably the last time wigs and hairpieces were popular – back in the late 60’s and early 70’s – think kind of shiny and ‘plasticy’ looking. I said, well come to the wig shop with me and let’s see what they have…..it opened a whole new world for me. That was about a year and a half ago and I now own 7 wigs and now no matter how crappy I feel, I can pick out my ‘hair of the day’, pop it on my head and at least feel I look decent. And the most expensive one was only about $150. I know it is such a small thing to some but I just feel better on the really crappy days, that I don’t look so bad because I can’t lift my arms to do my hair. And as for the diets, supplements, etc – wouldn’t we ALL do that if we could and it would cure us or help with the pain? We aren’t stupid, we just have RA and I haven’t heard from a single one of us with is, that hasn’t tried everything reasonable under the sun. Like Kelly said, being overweight has nothing to do with having RA – and although losing weight for general health reasons might be good, it is not a cure for RA.
    Although I haven’t been on this site for as long as most of you, I have to say the biggest thank you to Kelly for this website. I have learned so much more here than I have in the last 20 years of having RA. And I am so grateful to have a safe place to come -where I can say it like it is and not feel as if I am the whiney one – because each of you truly understands how my days and nights are. And I am sorry that you do truly understand because it means you share this insidious disease with me. I wish I had old age arthritis – it couldn’t be as bad as RA, could it? I always pray for just 10 minutes pain free – just 10 small minutes – enough time to regroup to be able to handle this for a little while longer. Again, my thanks to Kelly and all of you who listen to us, don’t judge and who do truly understand.

    Reply
    • February 16, 2015 at 6:47 pm
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      Cindi
      It was like I was reading about myself in your post. I too am 61. Do not look it. I was given this horrible news in 2005 but I have very aggressive RA. I have already been on so many infusions, Enbrel, Humara, and on and on. They just gave me Xeljanz, and I am too scared to take it. They are all bad for us but this one sounds horrible. I almost died last year from sepsis from taking Orencia. I don’t own any wigs, can not afford them but I still put on make up, and do my hair even though it hurts to do so. I feel like my life is over. Extreamly depressed but to scared to take antidepressants. I have already in this short time had to have two hip replacements. Unreal. The predizone is destroying my bones. But if I don’t take it I can’t get out of bed. Anyway was wondering if you are taking anything and if it is helping at all?? I know looking of web sites many people rave about the meds they are on. So far nothing has helped me. Sorry about spelling errors, look forward to your reply.

      Reply
  • January 26, 2013 at 9:51 pm
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    Great blog! I’m sure there are more than 10 Dumb Questions. Love the one about the blueberries, you can add grapefruit to that question too,
    Feel better everyone.

    Reply
  • January 26, 2013 at 10:05 pm
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    Cindie, I loved your comments. Thanks for the wig idea, my self esteem is way down at the moment. My formerly “pretty’ hands are knarly and swollen, my thinning hair is hopeless, I feel lazy,I struggle getting dressed, so any idea to help feel at least a little more normal or pretty is appreciated. Thanks

    Reply
  • January 26, 2013 at 10:46 pm
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    Rebecca – perhaps it is just a thing with ladies “of a certain age”…I dunno! But we were always taught to do our hair and look at least clean and neat before we left the house. But it does pick pick up my spirits on days I can’t lift my arms to know that I don’t have to look like the dregs of society all the time. I realize it is a very small thing but when I feel like I look better, sometimes I feel as if I am a tad better. I know it isn’t practical for everyone but it sure has helped me. (And hubby gets to choose which wife he wants today – long, short, in-between – blonde, dark, reddish,etc!) And reading all the comments, it makes me even more grateful for the most amazing husband (wigs aside) – he wants to do everything for me and I keep telling him “on the days I feel like I can do something, please let me try” – that is hard for him because he wants to do it ALL for me-he doesn’t want me to struggle and to watch my pain. And I feel bad because I don’t want him to have to do it ALL for me. But he is one in a million and I am so darn blessed and grateful he is my husband. I want him to have back the wife he married – he is happy with the wife he has.

    Reply
  • January 27, 2013 at 9:18 am
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    “but you don’t look sick”…that’s the one that drives me crazy….I’ve been getting that for years, long before the RA. I have High Blood Pressure. How could anyone that is 5’6” and 130lbs have that. Now I have RA too and again, I don’t look sick and I get the, “I wish I looked like you” or “You look so fit, what do you mean you can’t do that”. It doesn’t matter how thin you are, feet, ankle and knees still hurt and oh the hips…my first symptom I had that told me something may be wrong with me. What’s hurtful though is the look of disbelief that you see in people’s faces (they can’t hide it) as you try to tell them what is wrong with you and why you can’t do something

    Reply
    • January 27, 2013 at 9:22 am
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      I meant to add…I have just stopped saying anything to anyone and have learned to just say “NO, I can’t” no explanation…even to friends, some will never get it.

      Reply
  • January 28, 2013 at 3:20 am
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    I love #9. I cannot count the number of people who tell me they heard about some “miracle” cure on TV and that U should try it.

    Reply
  • January 28, 2013 at 3:45 pm
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    I was officially diagnosed with RA and Fybro in April 2012 after 10 years of seeing doctors and being told I was trying to get out of work or they would give up. Only 1 ever tested me for RA and when the bloods came back negative (which they still do) he gave up too. My kids are great and my new husband is fantastic but the rest of my family just try to compete. My sister has a problem with her shoulder. She has had 2 ops and is feeling better now. I just told her I wish it was that simple. My father has Osteo so he understands the pain in my hands but not the fatigue. I had to shut down my cafe last year because I just couldn’t keep going anymore and now we face loosing our house because I’m just too tired to go to work. All my friends think I’m just lazy. I have 1 freind with RA that tells me I look good all the time. I guess she means well but I thought she would understand.
    Thanks. I feel better now lol

    Reply
  • February 15, 2013 at 2:03 pm
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    I am 51 years old and was dx at age 3 with juvenile Still’s disease. Over my lifetime with this disease I have endured 8 total hip arthroplasties; the first two at age 13. Relearned to walk again and again. Have had 4 total shoulder arthroplasties, the last two failed and nothing more can be done so I live with my shoulders disjointed and moving into my chest. I also have osteopenia from the disease and corticosteroids used over my lifetime. After my daughter was born I developed Amyloidosis and my kidneys failed. I have had to endure the pain of a fractured femur and the two years it took to heal. Most recently I had surgery for a broken pelvis and broken hip prosthesis. The recovery took nine months of bed rest without moving. I had to lay on my back and not move from February to November. This was terribly painful to all my joints, not to mention that I felt I would lose my mind laying in one position for the better part of a year!! Now for the funny part; during this time of recuperation many folks would come to visit which was so nice, and I am forever grateful for their thoughtfulness and taking time from their busy lives to come by to visit me. But, there was a moment that I truly thought I was going to freak out completely….completely!! I have a friend who I consider to be a best friend. We have known each other for over twenty years. She has been one of my “surgery groupies” for 6 of my twelve arthroplasties, not to mention my broken leg, etc. when she came to visit me one day during this extended recuperation, she told me that she had heard from one of her friends that Still’sDisease and RA can be CURED by drinking 4tablespoons full of cider vinegar each morning. I have to tell you that it was all I could do to stay very still in that bed!!! I could not believe that she was uttering these words to me. This from a woman who has seen me suffer for years with these diseases!!! I nearly lost my crackers!! Anyway, I told her that the rumor was false and that telling me this was like telling someone with cancer the that a daily dose of lime jello will cure their disease.

    Truly I have lived through heaps and wads of these experiences and find that I handled them much
    better when I was a child and young adult. Mostly by patting the hand of the offender and walking away Perhaps I am too tired now to deal with folks ignorance or perhaps it was the extreme circumstances that I was living through. Whatever..I just simply could not help myself. The words escaped my mouth before I could gather them up again!

    I wish each of you the best in enduring this painful and disabling disease. I am so thankful for this site that Kelly has provided. Not only is it informative but also it gives each of us an outlet to express our concerns, fears and triumphs!!

    Reply
  • March 17, 2013 at 4:04 am
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    Hi everyone,

    It has been great reading this article and everyone’s posts! I found out on Wednesday that my r factor and ccp tests were both weak positives. I am 26. I still feel my symptoms are fairly mild, I was referred to the Reumatologist by my Doc because she suspected Fibromyalgia was causing undue fatigue, and so this diagnosis is a surprise. What I would like to ask (and I do realize that this is not a question forum, but I could not find another place to ask) is about peoples experiences with relationships after finding out they have RA? I looked and looked and couldn’t find anything. I found out about the test results on wednesday and told my boyfriend of 3 years on thursday. We are planning on getting married but it is a private engagement. He has given me a promise ring. Anyway, he was very supportive and told me this changed nothing in his feelings towards me, that we would work together to deal with whatever came and that he would always love me and I would always be his person. Friday he called and told me he had been naive. That he had done research and learned more about RA, that even though we loved each other there was more than one kind of love, and that we needed to reevaluate our relationship based on this new situation and that he would talk to me Monday. I feel just awful, has anyone dealt with something like this? Is it typical for loved ones to freak out and abandon us? Honestly, this has been the hardest part of the whole thing.
    (sorry to double post, I forgot to check the “notify me of follow up comments via e-mail”box. I checked it on this one)

    Reply
    • March 17, 2013 at 9:05 am
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      Hi Shannon, This must be very hard for you. Marriage is supposed to be for better or worse, and if he actually can’t commit to that, I have to believe it’s better you find out now. It still must be painful and I’m sorry.
      I know you may get some more answers to your post, but I thought I’d give you a link to one of the places where some have discussed similar situations, in case you want to read the comments. https://www.rawarrior.com/is-rheumatoid-arthritis-a-factor-in-divorce/

      Reply
      • March 17, 2013 at 3:06 pm
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        Thank you so much for your response and the link. It means a lot to me.

        Reply
        • August 31, 2015 at 8:03 pm
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          My husband in the counseling office told me i was faking it.

          Reply

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