I Fight My Pain and Blog
My daughter Mary Khris texted me from a tennis tournament a couple weeks ago. She said, “Momma, this is worse than Woman’s Day.” She texted me this image and read aloud to me the article which had upset her. She ended, “It sounds like it was her mom’s fault. RA is not anyone’s fault.”
It was an article about RA called “I Fought My Pain and Won!” in Prevention magazine which she received as a result of her tennis scholarship. The story was about Debbie McGrady who claims to have put her Rheumatoid Arthritis in remission with diet and exercise.
I’m so grateful that my daughter tries to understand and does not blame me for this unrelenting RA. She calls me a fighter: “You always give your all and you never give up. Your hard work and positive attitude have been a continuing inspiration to me.”
My responses to Debbie’s claims
Of course I don’t mind if Debbie’s RA is in remission. Or if she believes whatever she wants to about that. But only five or six percent of people with RA get remission. And someone needs to write about what the rest of us experience.
“When my knee swelled in my late thirties, I dismissed it. At forty-four, I developed foot problems, and deep down I knew why. My doctor confirmed: I had one of the most aggressive cases of RA he’d seen. Left untreated, I’d be in a wheelchair in eight months. Through the tears, all I saw was my mom losing the life she had loved. When my eyes dried, I grew determined to keep from suffering her sad fate.”
My knees have hurt for five years and been so swollen for the last month that I can’t straighten them. Some days, I can barely walk. Is that because I cannot dismiss it?
In most people, RA gets to a point where it cannot be dismissed. They can no longer do things they want to do. Most move past that point when their flares pause. Or a treatment helps them. Some are not that lucky and stay at that initial crisis status, never having a good day.
“With RA and your joints, it’s use ’em or lose ’em. So boy, I use ’em. Though I’d always been active, I stepped it up. I work out five days a week—thirty minutes of cardio and lifting light weights.”
Every article I read about joint protection says to rest joints that are in flare. Exercise is safe with joints which aren’t affected by RA or if a person is not experiencing a flare.
“My favorite snack was potato chips; now it’s apples—my husband jokes that I’m going to overdose! I buy only organic fruits and vegetables and hormone-free meat.”
My friend Jay says a vegetarian diet cures RA. But he knows it takes 36 years to do it. He knows because he has followed it for 35 years already.
“…my RA is in remission. Though I take the new prescription meds, I’ve met others on the same drugs who still suffer. I know it’s my attitude and lifestyle that let me live pain free.”
How does she know that is the difference between her and them (me)? Only 20% of people in clinical trials (best case scenario) improve up to 70%. Even when that happens, the improvement can be temporary since the treatment often stops working. Is that the patients’ fault?
My questions:
- Were none of the 94% of us who aren’t in remission exercising when RA nabbed us from behind?
- Do people believe that those who aren’t in remission just refuse to exchange potato chips for apples? Are we really that stubborn that we’d be disabled and die early for the sake of greasy snacks?
- Why do all these people continue to take Biologics (the most pricey class of drugs on earth) and then give their own diet and exercise plan credit for their remission?
- Does anyone think the Enbrel ad next to the story is a coincidence?
- Somewhere in your mind, do you believe that people in wheelchairs are there by some choice they’ve made?
Recommended reading:
- An old highschool painting by Mary Khris
- Antibodies Lessen Effectiveness of Adalimumab / Humira
- Woman’s Day Rheumatoid Arthritis Article: A Video Appeal
Hi Kelly!
Later part of 2008, my mom’s friend suggested that I go see an immunologist that she’s seeing who’s helping her treat her arthritis (she said it was a mild RA…not sure though). That doctor told me to have a no meat (except fish), no diary diet and to drink a soup that he bottled. He said this would correct my immune system. I obeyed but I really didn’t see any improvement. I only lost weight which is very helpful so as not to stress my knees further. I did this for 2 months and then I told my mom I don’t want to continue with it.
Then my flare up last 2009, another friend of my mom suggested that I take up a food supplement and to see another doctor (pain doctor this time). This doctor told me to have a no meat (except chicken breast & fish), no diary, no bread/rice, no spices diet. Plus, he told me to do some exercises. I really wanted to die – I was deprived of a lot of things. But then again, I obeyed. I lost more weight because of the diet. I really cannot tell at that time which worked because I also had biologics + meds besides the diet, food supplement, & exercise. I stopped after a month or 2 because we cannot afford the supplements plus the fact that I want my life back.
A lot of people who saw me after this thought something was wrong with me because I lost so much weight.
Then I had another flare up last year, 2010.
Exercise & diet only? I don’t think so. I believe that we should be more careful with our lifestyle but then would this remove the pain & swelling of our joints? Maybe.
Good for her that she has remission what about other people who probably has severe case of RA?
Anyway, may our God continue to bless you Kelly… 🙂
I’ve read that targeted and controled early and agressive treatment can result in a remission rate of as much as 50% in some recent trials. I’ve also read – over and over – that despite repeated investigation there is no evidence that any diet will influence the course of RA. My research does indicate that gentle exercise is beneficial but not for joints that are flaring except for range of motion and there are stong recommendation to protect the joints from excess weight bearing. Like you, I am constantly amazed by those lucky enough to achive remission who attribute their recovery to their diet and willpower and state of mind – all good things mind you – but it seems to imply that the unlucky are just not strong or good enough. I’ve also read that as many as 30% of RA patients are resistent to the new biologics. Those wonder drugs will not provide that wonderful remission for them. And not because they lack the will or strength of character or because they don’t exercise enough or their diet is bad. Just because.
I’m in a rush for some doc appts today, but I’ve read the same studies & I’ll reply more later. Probably in tomorrow’s blog. The 50% thing has been blown out of the water; but yes, I’ve heard some pharm companies claim it.
If hope or willpower or diet or exercise caused remission, I’d be one of the “lucky” ones. More than 30% are unresponsive to Biologics – by the pharma trials’ own numbers, it’s about 34%. More on that soon too (post 1/2 finished).
Thanks so much for discussion.
Argh, this just makes me angry. I read the article and I felt like it was implying I’m just not trying hard enough to be better.
It’s not our fault that we’re sick. Just keep remembering that. I constantly feel guilty over being sick, but it’s not worth our energy. Just talking about RA translates to trying. The only way to REALLY give up with RA is to curl up and wait to die… I don’t really see that many of up going that route.
Pretty frustrating de-validation article. I don’t mean to be negative or persnickety but it doesn’t sound to me like a very aggressive case of RA either. If it were those weights and cardio would have been out of the question. It’s not lack of will that prevents people from working out. It’s not being able to move!
I have extremely aggressive RA and I have to say that cardio and weights is NOT out of the question. It was very difficult for me to get to the point of working out every day, but now that I do I have at least 60% less pain. I do believe however that I am in a partial remission from Remicade. I have good days and bad, but the good now far outweigh the bad. I’ve been on Remicade for 6 years and in the past year (since I’ve started working out and eating better) I can honestly say that I’ve had a lot less pain. No two people are the same though. My successes may not be the same as anyone else’s, but I do believe that we all have a way to make our situations better (even if its just a little). Good luck and prayers to everyone having to deal with this horrible disease!
Yeah, this makes me angry as well. I have a sister who means well, and believes in alternative medicine. She has been a continuous source of irritation for me since I was diagnosed, because she is constantly on my back to eat only a raw, vegetarian diet, free of gluten, sugar, and preservatives. While I agree that I could always make additional improvements to my nutrition—this was exactly how I was eating when I was diagnosed! Not to mention, I was dancing 4 days a week (super intense cardio) and working outdoors as a landscaper. Part of what precipitated my first full blown flare was job-related stress; I was working 60 hrs a week for a manager who screamed and yelled at me daily. I had worked like this for several years when my symptoms began. I literally walked away from that job because the circumstances were eating away at my soul AND my body was shutting down. I drove home from work nightly with my hands frozen into claws and spent the night stealing sleep in fifteen minute intervals. But this is my truth, and I understand that everyone’s story is different. I digress…
I’m so irritated with media and people around me who offer these “cures”. You know, I don’t need to hear how I am not “good enough” or that I should try harder, or that it’s all about my attitude. While our choices certainly impact our health to some degree, chronic illness is riddled with aspects that are largely beyond our control. I don’t need a miracle cure right now, I need: 1) access to an American healthcare system that actually CARES for me, 2) a means of making a living for myself that doesn’t require me to sacrifice my health and dignity, and 3) acceptance of me and my invisible disease by my friends and family. I’m all about folks speaking their truth, and if you feel you’ve been cured by positive thinking/food/exercise/voodoo/whatever then good for you—but don’t you dare invalidate the rest of us who are out here struggling. We’re doing the best we can within a system that doesn’t provide us with the proper tools. ‘Nuff said.
Exactly the point: accusing or invalidating those who are suffering through no fault of their own is unkind and untrue.
Oh no, here comes the next barrage of misinformation that arm the people – including my close loved ones – who claim to me that I did this to myself by: drinking coffee, not exercising (so, 3X weekly workouts at the gym, 10 mile bikerides each weekend and running were not exercise?), eating wheat, eating sugar, eating dairy, eating meat, not eating meat, not eating blueberries, not taking fish oils, not drinking green tea. News flash – I have tried every diet, from vegan to specialty diets built by leadings nutritionists (ie, those who have written bestseller books, don’t want to name here!). I’ve tried everything!! The only things that work are the drugs – the diets are a nice “add on”, but I don’t get a flare if I drink a cup of coffee – but I do when I miss MTX or Prednisone! I can’t imagine doing the type of exercise this woman does if she has aggressive RA – I don’t think she knows what aggressive RA is! I will write her personally – she is LUCKY, she is BLESSED, she is FORTUNATE – but she is NOT a model for what an individual with aggressive RA can “do for themselves”. What I would give to be able to ride my bike again – it’s not for lack of trying or lack of willpower or knowledge. This woman should be completely ashamed of herself for not acknowledging that the is, in fact, not so badly off in her disease as others may be. Ignorance is shameful and Prevention should have researched this more thoroughly before printing such a misleading article.
I happen to be one of the lucky ones who responds well to meds. Unfortunately they do lose effectiveness over time, so I have been on countless meds over the last 20 years. I am not disabled or in a wheelchair or even in need of a cane like so many of my counterparts, in spite of the fact that my RA is in my shoulders, hips knees and ankles. Absolutely NOT do I attribute it to diet and/or lifestyle. Yes, I find certain foods, stress, or overuse will cause flares, but I really don’t find that cutting certain foods or groups of foods out of my diet controls it in any significant way, and believe me I tried as many as I could when I was first diagnosed. I was a very healthy, active person, hiking mountains, doing 3 day backpack trips, etc. I have had to give all that up and settle for walking the dogs, but at least I’m able to do that!
Yes, it’s wonderful for her that she is doing as well as she is, but the implication that those who are not faring as well is because they aren’t working hard enough at it is infuriating…
“I know it’s my attitude and lifestyle that let me live pain free.”
All I can say is that she is clueless. Clearly, a positive attitude and healthy lifestyle are vital to our quality of life and our ability to live WITH pain, but to think that we have the kind of control this author suggests is both arrogant and hurtful to those of us who know differently.
AND an article like this only creates more misunderstanding for those who do not live with RA. I can anticipate that one of my “clueless” friends is likely to send me a copy, *sigh* to me
I would like to thank you for putting out all the info about R.A. that you do. I am a 30 year old wife and mother. I have had R.A. for 5 years but it went untreated for the first 4 1/2 years because my family Dr didn’t know what to do about it and I had no idea what R.A. was. I wish I had found your site 5 years ago, maybe my R.A. wouldn’t be as bad as it is now. I am now in the group of people who never have a good and the meds haven’t seemed to slow it down at all. You find the words to express what R.A. is and what it does in a way I wish I could. I have little support from friends and family because I cant find a way to make them understand that this isn’t their grandmothers Arthritis. Thank you for letting me feel like I am not alone anymore!
Heidi
Thanks Heidi. I’m glad we can help each other.
I had to dictate this (my lovely secretary was nice enough to take down a personal response for me) because both of my wrists are splinted in thumb pica splints. My PsA is flaring. I would have walked the tape to her desk, but I’m having difficulty walking right now. Maybe if I got my husband to drive me over to the gym and help me get on the treadmill, turned in on, and then stand there screaming at me to keep running I too would get better. But somehow I don’t think so. I already eat as she suggests, so that’s not working. I guess it’s just me. I’m a total inflammatory arthritis failure. Shit. ; )
That article kind of made me want to scream. I mean, seriously. I guess my attitude is just holding me back, right? Its so hard to get those imy life to understand without articles like this.
I agree Kelly
I went vegetarian at the age of 12, I was dxn with RA at the age of 19. I exercise when I can, yoga is my exercise of choice as its gentle on my joints and can be easily adapted on my worse days when I literally can only manage a few gentle stretches. Today I got back to it after 4 or 5 days of simply not having the energy to get off the sofa, much less exercise.
To anyone who says that exercise & diet are a cure all, rubbish. I would dearly love to go running with my daughter, my hips have secondary OA now and I don’t see myself ever being able to run again, or to do yoga for hours on end without feeling like death at the end of it. I eat healthily but I do have the odd treat also, I don’t drink as my meds don’t allow me to. We all have to do the best we can with what we’ve been dealt. Maybe one day they’ll come up with a cure or at the least drugs that will allow us to be able to live a full life again, we live in hope.
I watched my sweet mother chase this carrot on a stick when I was a teen. She had been diagnosed with MS at the age of 19. She began reading Prevention Magazine back before they ever had drug ads. It seemed as if every other week she was on some crazy diet that would cure her MS. And it always involved avoiding huge numbers of food groups.
Of course nothing worked and she always believed this was her fault.
It is so frustrating to see things like that! I tried to “fix” myself for a while. Guess what – it didn’t work. By the grace of God, I am one of the fortunate ones who is greatly helped by the currently available meds — but I know it’s nothing I did that caused my RA and I know that even when I feel like my RA is under control, it’s not really under MY control. That was a hard lesson for me to learn. Yes, we all need to make good decisions to take good care of ourselves, but that is not a cure. And I agree that taking good care of yourself means RESTING flaring joints! Stretching can be good, but we all know what happens when you over-do it…and it’s not pretty!
When it comes to “success” I have so much more respect for people like you Dana. I know you can do much more physically than I can, but you don’t try to take “credit” for your success as if my “failure” to repsond to tx is my fault. You have more credibility than Debbie ever would – it seems like intellectual dishonesty when we see at the end of the piece that she’s on biologics anyway…
This makes me so angry. Like the others have said… There is no documentation that diet change can treat RA, it also frustrates me that she states her positive attitude and lifestyle change let her live pain free… Obviously those with RA that are not pain free therefore do not have a positive attitude? Rubbish. Obviously those that are not pain free, are not trying hard enough to be better?
I am sick of feeling as though RA is my fault or that I am just a big whiner. When I go and see my rheumatologist he continues to act surprised that I have not responded to his treatment and I walk out feeling like I have failed a comprehensive exam. When I watch RA commercials and see a woman wearing pretty red wizard of oz shoes I think “I am taking that medication, so why can’t I do that?”
When I saw my rheumatologist last week I asked him what can help with the relentless fatigue associated with RA that I experience. He told me to exercise lol. I don’t think he realizes that my life already is far from sedentary. I work 40 hours plus a week in a very physically demanding career where there is very little sit down time, and then when I am not at work I chase after two small children as a single parent. I get plenty of exercise… But to my defense, how am I supposed to properly complete a good cardio exercise when I cannot figure out how to button up my pants, open a bottle of water, braid my daughters hair, or make a bed without knocking back more pain medication afterwards and wrapping myself up with a heating pad? I discussed this with my rheum and he said “well of course yes, I can understand that battle”. No he doesn’t… He wouldn’t have brought it up if he understood my battle. He also said, “Well I think our biggest problem here is adequate pain control.” Ya think? But I don’t want my pain control to be controlled through a narcotic… How am I supposed to perform my standard activities of daily life on a narcotic when I cannot stay awake on them or drive? I want my pain control to come from my RA being under control… I don’t want a band aid. Obviously I am asking for too much here.
I find it really hard to believe that the article was truly written by someone who had experienced aggressive RA and the pain it often brings in the past. How could you forget the crippling pain… How could you not do your own reading and find out what we all know… I would be interested to hear about this athletes poor diet and exercise plan while she was in pain… I agree with all that it is wonderful when someone is in remission, but this article seems quite suspect. How could an athlete not know that working out while in pain, particularly with RA, is a huge NO.
Oops, was so upset I didn’t realize that it does not say that this woman ‘was’ an athlete prior to RA diagnosis. I did look at another article:
http://www.empowher.com/rheumatoid-arthritis/content/my-rheumatoid-arthritis-journey-power-persistence-helping-others
It does imply that she was doing quite a bit of exercising prior to RA.
This article infuriates me! It’s articles like this that make people think that what I have is “no big deal”. “I stepped up my exercise to 30 minutes?” I was working out 2 hours a day when RA hit me a 21. No, I didn’t have just a minor knee problem for a few years and then decided to go the doctor. Instead, I woke up one morning and couldn’t move my shoulder. Than two days later, I couldn’t move the other. Within a month I had to have my roommate dress me and drive me to class. If her doctor said her case was the worst he had ever seen than I should have been dead in 8 months! I have had this disease for 13 years and it has only gotten worse. I would give anything to lace up my shoes and go for a run, heck, go for a long walk at this point. I’m on my 4th biologic treatment and I’ve always eaten a healthy, organic vegetarian diet. Yes, RA sucks but the one thing that everyone does say to me is “wow, you have such a positive attitude”. My typical response when a close friend asks if I’m feeling any better I say, “I feel great – from the neck up”. So obviously I’ve learned over the years to keep a positive attitude. I think articles like this, whether they be about RA, MS, AIDS, or cancer try to show that for those that are still suffering, that they have a choice. That they can make changes to their lifestyle and heal themselves. While I agree that everyone can improve upon their health, that doesn’t cure these types of disease. If that was all it took than diseases wouldn’t be existent.
This makes me sick! I am so glad your daughter understands the truth.
Wow,I know it must frustrate all of you who suffer the way you do with RA and do all the things you are told will help and they don’t to read something like that.I first want to say that I’ve had this thing since I was 19, I’m now 55.I’ve been at every level of pain and discomfort it can cause. It’s insidious. But we are all different, our biochemistry is different and our RA is at different levels of severity at different times. What helps me might not help you and vice versa. I do work out 6 days a week and I do push it at times. I do eat a gluten free, pretty much vegan diet. I am on a biologic and natural supplements for inflammation. And I do believe in a mind body connection. Like I’ve said prior I’ve had this for alot of years and had to find what worked for me. I feel so bad when I read the comments from others who are suffering so much because I remember what it was like. I know I’m one of the lucky ones and the biologic does work for me. But I was prescribed so many things that did not help over the last 36 years. And as for the working out my rheumi is all for it and has never said it was a bad thing, ever.It also helps my serotonin levels and keep the weight down. I’m not saying everyone should do this because it works for me along with the meds. It’s not a perfect fix I still have bad days now and again that bring me back to the reality of the disease.Which make the good days all the sweeter. I do hope and pray that something is found that will help all RA pts. not just the few.
Okay, this is my last post on this article and I will let it rest… I believe Debbie is paid by a drug company to say what they want her to say:http://www.risesupport.com/index.html
The site says:
The people featured on this website are members of the RISE Ambassador program, which is sponsored by Genentech USA, Inc. and Biogen Idec Inc. Genentech compensates the Ambassadors for their time and expense while presenting their stories.
And this remains the reason why I havent told anyone (apart from my mommy and sister, whom I am very close to) about the RA…I’m afraid of articles like this…And here in South Africa it seems to be even worse. I mean, the information out there about RA. No ads, no special “RA Day”…
We get the ads on tele, in the printed media, on the radio, for other “well-known” diseases. AIDS, HIV, TB. Epilepsy, Diabetes etc etc…NOTHING for RA. That’s why I sometimes – just to test the water – say something about “Rheumatoid Arthritis” in a casual conversation. Then I get the same old answers : Oh, I have that! Or, my mom (grandma, sister, auntie whatever) has / had it. And then I know its no use…
PS. My last appointment at the hospital was 3 weeks ago. I did not see my rheumy, but the 2 internists who saw me (one an older lady dr and the other a much younger male dr) both told me, when I ask them about my diet, that there is not much a specific diet or excercise routine will do for RA. That made me feel SO much better.
Dont get me wrong, they did not say I can eat what I want. But they did say that there aren’t any guarantees with RA. I can swim when I can, do light weights when I can, walk as much as I can..and of course, eat as healthy as I can. But (and they did emphasise this), its not going to make the RA go away. About that they were both painfully honest. And I appreciated that. NOW I can move on with my life. NOW I finally know I am not responsible for this. And NOW I do what I can when I can and not feel guilty about it…
Stella, Cape, South Africa
This makes me soooo mad!
I have been a vegetarian for over 25 years. I eat organic whenever it is available.I never eat crisps (potato chips) and I rarely have chocolate/sweet snacks in the house.
I was diagnosed with RA 5 years ago and at this time I was the fittest I have ever been…I went to the gym every other day, step/aerobics classes, badminton, cycling everywhere…so if this article was true then surely I would be fit, healthy and in remission!…but I am not!
I have now developed hip/knee problems that they cannot find a reason for and although I make an attempt to get back to some sort of fitness level the RA can still put me back just when I start to feel good about myself.
This whole article is misleading and it is sad to think that newly diagnosed RA patients without all the information necessary would believe this rubbish.
Keep up the good work Kelly your research helps educate and inform me every day and for this I thank you from the bottom of my heart. XX
As I lay in bed next to the cat because I can’t move due to a flare, I got extremely angry over this article and mentioned it to my husband. This lovable comic book “nerd” said to the cat, “Well Isis, I guess Mommy will just have to become Green Lantern and use the power of the ring to make it all go away!” It’s just as unlikely that I will become a Green Lantern as this person went into remission only with diet and exercise but his comment made me laugh and realize that no matter how angry I get about the ignorance of others (and that’s what both this person and article shows) what’s important is that those who love us have some inkling of understanding or try to understand what we go through every day; and they try to make the bad days bearable.
Thanks Kelly for posting this.
Amy,
Thanks for your reply. I loved it. It made my day!!!
Ya know, I just read all these well put post’s. Everything I wanted to say, has been said already.
I also have a group of great girlfirends, all pharmacists, who are constantly trying to help me find my cure. They fill my 9 perscriptions each month, and give me the latest research they have done for me. I am the first friend they have had with RA. It actually scares them, that maybe they could get this horrible illness themselves someday.
The latest…yeast. I am a bakery manager, and of course I work with live yeast. One of them read someplace that to much exposure to yeast, has been proven to cause imflamatory illness. Really? They believe my cure would come if I changed my job. I love these girls so much, but I have been exposed to yeast for nearly 30 years, and was diagnosed with RA one year ago this month.
We have to understand the people that love us, just want to help. And they are frustrated seeing us suffer. This desease has taught me so much about myself. To be more patient, understanding and compationate, and thats just with the people that care about me, because they truely don’t get it.
hi just like to make a comment on this article. i’m in remission right now. i did it through diet and exercise. i also took myself off all meds. i was on methotrexate and enbrel as well as all the others to help cope with the side effects. my rheummy advised me not to because i’d suffer severe withdrawal symptoms but i listened to my heart and came off all meds. that was 18 months ago. i do suffer aches and pains if i overdo things, cold weather etc but apart from that i’m very happy with my decision. i’m not advising anybody to do as i do, but hey, it worked for me. i had become like a zombie on the meds.
Interesting that she doesn’t make the mental leap between taking RA drugs and feeling better. It is very sad that she talks of others on the same drug (I’m guessing Rituxan) and indicates in a round a bout way that it is their attitude that is keeping them from remission. Apparently she has NOT done any research on efficacy of these drugs. Maybe she should read some of the clinical trial results before she slams those that aren’t so lucky.
After reading this,
“I know people with RA who won’t exercise because of pain. But when my whole body ached, I still worked out, even if it was just an easy walk.” I realized that she is clueless. I’ve had flares so bad I couldn’t get off the toilet let alone go for an easy walk. Honestly I wish I was like her sometimes…in remission and clueless about what may still happen. Wouldn’t that be nice?
I know we are supposed to say that we are glad for her etc. but I’m not glad when someone takes their good fortune and uses it to hurt others whether it is deliberately or otherwise. This woman claiming that attitude, not the drugs, is the way to RA remission is like someone winning millions saying “I knew all I needed was positive thinking to win that lottery”. It’s absurd and not true.
I wonder if these people that write these articles will publish something in a few years if their miracle cures or precious attitudes don’t seem to work any more? Maybe the title could be “How I was so wrong about what I thought I knew”
Thanks, Lisa. Interesting thoughts.
We all need to be carrying around this flood light to uncover the untruths about ra. These types of articles put us back into the dark ages. ARGH!
This is the biggest load of “crikey” ever! : ( and the Enbrel add was priceless.
The only thing I found amusing wiht the article is the 100% dislike OF her article! Granted, only 8 people voted (I was one of them) :o) but I am a pretty determined person who actually WANTS to raise her children and take care of her family! Not one that wants to lay in bed and take 1/3 of the pharmacy just so I CAN get up and go to the bathroom!
Psh! They need to reprint another ariticle telling the whole truth and nothing but the truth and not fill “newbies” heads with such nonsense or such false hope!! : (
By this woman’s logic I should be almost healed! I have had RA since 3rd/4th grade and I was in remission for 5 years (thank you god) following a major flare, and only learned of my RA upon it’s return. But I used to run 3 miles a day and now do water exercise once a week, I don’t eat corn, have minimal milk and minimal wheat, and don’t consume processed sugar. I appreciate that this woman feels she has beaten her RA, but if she really CURED it I feel that there would be a lot more press regarding her “miracle lifestyle”. Also the Enbrel ad was strategically placed….
Good points. Thanks.
I was completely bedridden for 9 months due to RA.I am currently in no position to run, sit down or getup from the floor, can’t walk long distances and can’t fold my legs. My knees are constantly in pain and look monstrously swelled all day. My wrists, neck, shoulder blades are all bloody painful. After 9 years into arthritis, I have seen death very near and have dealt with outright depression swings and coped things with an optimistic attitude. Suddenly, someone like this lady comes and tells us to try supplements, organic foods n diets, ATTITUDE and CARDIO. I know body composition and reaction to treatments vary but never knew a rheumy who suggested CARDIO and other such exercises for people suffering with RA.
Having done all these myself for years, my RA hasn’t gone to remission atleast once. I am also doubtful whether her RA was really as relentless and aggressive as she claimed,else it wouldn’t take 10+ years for it to progress from foot pain to getting on to a wheelchair. With all my experience with RA, I am sure to get these ‘facts’ atleast right:/Above all, her success story is not all that inspiring and yeah, I wouldn’t really lookup to her as an RA warrior.
These types of articles upset me and confuse Jordan. Since she is only 9 she believes a lot of what she reads or sees on TV. At the age of 5 she asked her rheumy if there was a special diet she could go on to help her JA. 5!! All because my sisters boyfriend said he knew someone who “cured” her ‘arthritis’ with diet. Jordan was CRUSHED when she was told there wasn’t such a thing. She was told that there are people who believe that eating or not eating certain foods can help with SYMPTOMS but it will not stop the progression of the disease.
Over the years we’ve been given juices, vitamins and tons of advice about how fish oil will cure us. If it were that simple don’t you think we would have already done it?! Her favorite theory is that Jello will fix her. If that were true my pantry would be filled with nothing but lime Jello!
“Every week, I volunteer with senior citizens, taking them to doctor’s appointments, the grocery, wherever. Not only is it fun, but it also helps keep my own problems in perspective.”
So basically we just need to be thankful we’re not as bad as the next guy?
The Prevention article makes me so angry that I can’t even respond right now. Partly because I have to budget my limited energy to living with the real physical effects of RA. Maybe I’ll have more energy to respond later.
Thank you, Kelly, for founding and leading a community of real people advocating for the truth instead of irresponsible and ridiculous untruths like this article. Warriors because we have to be.
I did, though, go to the link to the article and clicked “don’t recommend” at the bottom like a fellow warrior suggested. Here’s the link again for anyone who wants to show disapproval: http://health.msn.com/health-topics/pain-management/rheumatoid-arthritis/articlepage.aspx?cp-documentid=100266205.
I wish I was as brave as you when it comes to sharing what RA is really like. kudos 🙂
I think some of the folks who write/talk about this disease are determined NOT to make others uncomfortable with what they write/say (sometimes I’m guilty of this myself). My account of living with RA is: There are days when it’s very hard to wipe my own ass, and I’m a 31 year old man. I know people don’t want to hear that, it makes them uncomfortable. But that’s honestly the most accurate thing I can say to explain what I deal with, in the very short amount of time that most folks are willing to listen. Frankly, I don’t give a damn if it makes them uncomfortable to hear that.
You are NOT one of these folks that are afraid to upset those who will listen, Kelly. And for that, I am grateful 🙂 It isn’t our responsibility to make those around us feel OK about our disease. It IS our responsibility to provide them with a REAL account of what living with this disease can mean.
Painting a bright picture of RA doesn’t help those of us who haven’t “won” the fight yet (I say yet b/c I hope someday we will). All it does is give our friends and loved ones the impression that we are somehow not doing something that we should be doing – or doing something we shouldn’t be doing. If we’re willing to sit with a needle in our arms for 5 hours while poison slowly drips into our blood, then I’m pretty sure we’d be willing to do just about anything if it meant “fighting our pain and winning.”
Michael, I was out at numerous medical destinations all day & I’m reading comments after midnite since I just finished my blog post for tomorrow. Thank you for this comment – so perfectly stated. It encourages me to feel so well understood as well. I have no animosity toward this woman Debbie or anyone, but I will not be spending my time on this site and tell less than the truth. Especially after having lost so much of my abilities for the last 5 yrs to this disease. And I will not sit by and have children or their parents blamed for their own pain the way they are sometimes without speaking up to object. Newly diagnosed people who have so much taken from them also deserve so much better than this country gives them. Imagine doing this to people who are diagnosed with diabetes or cancer. It doesn’t happen.
Thank you.
I like your style 🙂
In response to Kelly’s question about physical activity, until Rheumatoid Disease (RA) stopped me in my tracks, I was going to the gym three times a week doing a program of weight-bearing aerobic exercise, in addition to aerobic exercise outside of the gym.
I was in the best shape I’d been in since college (30 years prior). I was living a healthy lifestyle, eating healthy/organic, and had gradually lost over 40 pounds.
At the time I was physically at my strongest, I was no match for the systemic attack Rheumatoid Disease ravaged against my body.
Disgusting. She is part of what’s wrong.
Yet another set back in educating the general public that this is not your grandmother’s arthritis! Shame!!
Well, I was really shocked and confused when I read Kelly’s blog today. So I scrolled back and clicked on the article to read it for myself. After much consideration, I think I get the message: If you are taking biologics (Enbrel?) and
you’re one of the countless who biologics have failed to “cure”, it’s your fault. Oh, and your rheumatologist who tells you to exercise gently – well he/she is an idiot! And the research – forget that silly research. You think you want to be well – you’re lying, you enjoy being sick. What a load of ca-ca! This lady is either lucky and clueless as to what “aggressive RA” really is, or
she’s a slimy shill for drug companies who want to blame the patients if their treatments aren’t effective.
My head is swirling with conflicting thoughts after reading this post, the original article, and the subsequent reader comments.
I know several people with RA, including myself. These are people that I have known for years and did not meet online or in support groups. One of the ladies swears that diet is the key to controlling her RA and is currently on no meds and doing welll. Another women has had RA for several years but is only affected in the hands. She takes no meds (other than NSAIDS) and has never had a flare affecting any other joints except those in the fingers and thumbs. She continues to go to the gym on a regular basis. Then there is my aunt who has had 7 joint replacements, has severe RA, takes no DMARDS, and continues to push through the pain and exercise 3x per week. She is in her late 70’s, has had RA for 40 years, and has excellent mobility but severe hand deformities. And finally there is me. I developed RA almost 2 years ago. It came on with a bang, and it wasn’t long before I could barely walk and was nearly bedridden. At the time I developed RA, I was in the best shape of my life. I exercised 4-5 times per week, doing kickboxing, lifting weights, running and practicing yoga. I have been a vegetarian for almost 20 years and eat mostly organic, non-processed food focusing on fruits and veggies. Some would call me a “health nut”.
Fast forward to the treatment process. First came SSZ, then Mtx. Neither gave me a significant improvement or allowed me to resume exercise. Then finally I asked for Enbrel, and within a week or two the pain had significantly decreased to the point where I could contemplate a future that included physical activity. Now I am fortunate to be able to exercise again. I do yoga 2-3 times per week and also do the elliptical, treadmill and lift light weights. Does it hurt? Yes, it hurts at times. If it hurts terribly, I stop the exercise. I realize that I am very lucky to have received this type of response, and I truly have compassion for those who do not respond to meds or have a suboptimal response. But I can say with certainty that exercise and a positive attitude make a huge difference in my fight against RA.
The main point I want to make is that no two people with RA have the same exact experience with the disease. I personally do not feel that diet affects MY RA, but that does not mean that this is true for everyone. Isn’t it conceivable that Debbie’s RA really did improve with diet (although I suspect that Enbrel also had something to do with it)? My friend, mentioned above, is certain that she can reduce her RA symptoms with diet, and I believe her. I think back to the point in time when I was trying to get a diagnosis, and the absolute worst feeling was when the doctors didn’t believe me when I was reporting my pain levels and symptoms. Several dismissed me and said that nothing was wrong. How infuriating it was to have my truthfulness questioned when I was reporting my personal experience! While I truly respect the opinions of all of Kelly’s readers, I wish that there were more acceptance towards those who choose to fight their disease in different ways. What works for one may not work for another.
My main issue with Debbie’s article is that I wish it would have given more credit to the Enbrel, which is likely the main reason for her remission. I don’t doubt that Debbie’s diet, exercise and positive attitude have contributed to her overall health and well being, but it would be a stretch to think that they were solely responsible for her remission when she is admittedly taking Enbrel.
Kelly, I am going to answer the questions posted at the end of the blog post:
Were none of the 94% of us who aren’t in remission exercising when RA nabbed us from behind?
Personally, I was exercising regularly doing cardio, strength training and yoga. I’ve heard the same from many RA warriors.
Do people believe that those who aren’t in remission just refuse to exchange potato chips for apples? Are we really that stubborn that we’d be disabled and die early for the sake of greasy snacks?
Diet doesn’t seem to make a difference in my RA. Most of the people that I know with RA have healthy diets.
Why do all these people continue to take Biologics (the most pricey class of drugs on earth) and then give their own diet and exercise plan credit for their remission?
I am not in remission, but I believe that Enbrel is almost solely responsible for my approximate (average) 70% improvement in RA symptoms. I believe that diet and exercise are responsible for my well being and contribute to a healthy lifestyle and positive attitude.
Does anyone think the Enbrel ad next to the story is a coincidence?
This is an excellent question. Shame on the author (and on the pharma and Prevention) if she was paid to write this article!!
Somewhere in your mind, do you believe that people in wheelchairs are there by some choice they’ve made?
Absolutely not! I don’t know anyone who wants to be in a wheelchair.
I’m getting ready to have a knee replacement late summer or early fall. I’m TRYING to lose weight (again) to reduce complications. Several of my friends have said things to the effect that I wouldn’t need knee replacement if I weren’t so fat – NOT that I wouldn’t need knee replacement if I didn’t have RA. Dang! Get it straight people!
i’m 36 and have had RA for 11 years. i do think intense exercise helped my RA a lot (it also helped my attitude about it) BUT that was possible only because the RA was really only in my wrists. now that it’s moved on to an ankle and my neck, yeah, i’m not working out quite so much. many others have already said this, there’s not just ONE RA, we all experience it differently from one another, and also from one year to the next. 4 years ago i would have claimed exercise was doing a lot to keep thing at bay (well, the enbrel too!). but i wouldn’t have claimed that too loudly, out of respect…more especially for my uncle who’s had it for 35 years and…well, he has a great attitude about it but the pain he is in is indescribable. (luckily, you all know what i mean.)
Claire, can I use myself as an example? I’ve gotten many many letters who tell similar stories. I WAS exercising more than the average person throughout my life, in spite of pain. Then I got unrelenting/non-flaring RA all of the sudden in every single joint. People with RA in wrists only told me to continue to exercise. This is just a logical mess. People with RA that flares and remits and only a few joints affected tell people with unremitting disease in every single joint to just exercise? Thankfully, most of this hype comes from the media and not from fellow-patients. However, it is my opinion that people like Debbie are being used by magazines like Prevention to sell ads for products like Enbrel. I know it’s very late and I’m in extreme pain, but this is how I feel. Just one person’s opinion.
I don’t agree that “intense exercise helps RA.” I’ve spent so much time thinking about this, hearing experiences from patients, and researching it. I’ve also tried it. Just like I drank the juice my dentist gave me. I already ate blueberries, but I ate more. I guess we can agree to disagree.
Question 1: I was a high school basketball player when I got sick and was diagnosed. I was pretty active, so I’m going to go with no on that one… It took a couple years for them to find the right combo of medications to make the pain and inflammation livable, and as it was, I didn’t get to play my Sr year.
I blame the long time in controlling it to the bureaucracy of ins companies. I had to work my way up the tiers of medications from RX IBU through the other varying DMARDs till I got the the mobic/mtx combo that finally worked for me. But like most out there, after a couple years the MTX stopped working and I moved on to the Enbrel.
Not all of us react to the medications in the same way, they don’t all work for all of us. And some of us get hit harder than others. While my diagnosis was changed years later from RA to MCTD it is still a disease that has components of RA included in it, and I still relate and have symptoms that are the same as you’d experience. The only difference I find when exercising more (when I have the energy to do so…) is that it can either exacerbate my condition or give me more energy. It doesn’t work for everyone and it doesn’t always work the same for an individual every time. As we all know, our diseases are, if nothing else, unpredictable for the most part. Its frustrating to see that these kind of ignorant comments are being published, and in a publication like prevention that many take for fact/good info makes is just plain disappointing.
Just read the complete article. Found her “ignorance is not bliss” comments interesting. Doesn’t early detection for better treatment options counteract her can-do, use it or lose it attitude hype? If she’s so convinced that she’s been able to beat RA, why is she still taking medications? and not just any meds, but the new ones, which we can only all assume are biologics of some sort. I’m sure thats not effecting her little science experiment at all…
and..
“Don’t let anything stop you:I know people with RA who won’t exercise because of pain. But when my whole body ached, I still worked out, even if it was just an easy walk. It gave me energy, and I was encouraged to know that my disease wouldn’t get the best of my body.”
My only experience with trying to push myself when “my whole body ached” was to go into full flare mode and complete exhaustion. Would love to know how she was able to get more energy! Even post-flare I tried a test walk on a nice day, I only made it a 1/2 mile before claiming defeat and turning around to head back to my car. That mile completely drained me and I was physically exhausted for the next few days. Walking to my car made my legs feel like lead and I longed for a nap. I hope people don’t get sick trying to follow her “advice”.
I hate to say it but I have tried it. With running and tennis and and and. I knew better but I had to prove it to myself. It was so hard to see my life just slip away from me so I had to try. No dice.
We’ve all tried it. We want to believe that we’re still capable of everything we did before we were diagnosed and it changed our lives forever. We don’t want to admit that it has changed things, changed us, but if we’re honest, we can’t have that kind of drama and pain added and not have it affect some part of us. And we certainly don’t want it to cause us to miss out on things with those close to us. I’ve been on walks with my sister and friend where I’ve had to tell them that I can’t keep to the pace we were at, we’d slow for a bit then things sped up again (we are all typically speed walkers, one of my biggest adjustments when feeling the effects of my disease) sometimes I’ve had to trail behind, but they notice and slow for me again. Its not something we like to have happen, but if we want to remain “healthy”, or our current level of it, we have to make adjustments.
Michelle, well said regarding the article’s claim of exercising even with a full body ache and I know that I long to exercise everyday, but I learned the very hard and painful way that if I push myself through the pain I would be SO swollen and in so much pain that I couldn’t move for DAYS! I even have a difficult time just getting out to pick up groceries and do basic household chores without figuring out that fine line between pacing myself and pushing too far resulting in days of major exhaustion and pain. These types of claims are disheartening for those of us who have tried all of the known treatments (meds/physical therapy, etc) and have not had good results. If it worked for them (even if it’s hard for us to believe), then great, but everyone is different and responds differently to medication and physical pressure so I think that article making it sound as if we just haven’t pushed ourselves enough is infuriating as well as misleading to the general public about the majority of RA sufferers. Just my opinion.
I was riding my bicycle, exercising as I normally did when I noticed the swollen bulge behind my knee, a bakers cyst. I kept exercising as much as I could between the four joint surgeries I had before I was diagnosed. I was so freaked out when I knew I probably had RA, I insisted on going for a hike, I was so afraid I was losing this part of my life. After the hike I couldn’t walk for 2 days. Then the diagnosis, “aggressive RA”. I continued to exercise whenever I could, now after nearly two years it is becoming impossible with RA fever everyday, permanent joint damage, pain etc…I need to use the energy I do have to get some household chores done and babysit my grand daughter.
About the food issue. I eat about 80 percent organic. I eat fruits, veggies and okay, chips too, but they are organic-baked chips! I also eat some bad foods. I bet Debbie do-gooder is not perfect either, even if she says so. I am gonna go spy on her and see 😉
I ♥ you rondakay!
ANOTHER TRIAL AND ERROR BUT WONT TRY IT BUT LIVE MY LIFE WITH THIS CREATURE,AFTER TRYING ONE GLASS OF RAW SPINACH JUICE FOR 2WEEKS WITHOUT ANY DIFFERENT NOOOOOOO WONT TRY ANYTHING ESPECIALLY TO AVOID CERTAIN FOOD OR ANYTHING ELSE
Your daughter is awesome Kelly. Not only does she know the difference, she tips you off to this kind of crap. What frustrates me is that just one irresponsible article like this can undo countless hours of real RA data. Prevention knows better too, why would we believe anything else we read in their magazine. Is it any different than the National Enquirer now?
Ra is a complex disease with no known CAUSE or CURE. A healthy diet is good for overall health but no one can even agree on the BEST healthy diet. Many people have food sensitivities/allergies that are undiagnosed but frequently cause arthiritis type symptoms. So try the diets with your doctors consent, you might find some relief to some of your symptoms, just dont confuse that with treating your RA. It is the same as if I am a diabetic and I get an ulcer on my leg that get infected. Controlling the diabetes will help the wound heal but not until I take the antibiotics and clear the infection. Two separate things that impact each other. Exercise is another issue. I put my ugly bloated self out there with a couple of videos on exercise so obviously I think we need it. We also need to understand that a joint that is in a flair is extremely prone to injusry. Ligaments and tendons are already understress from inflammation and can easily tear or rupture. Bones that are already thinning with possible erosions are brittle and crack easily. So we need to be smart when we exericise.
Kelly, I can only speak for myself, but I follow this site because I know the information I get here will be science based, well researched, and not sugar coated. It doesnt improve my attitude to have things glossed over, because then when the reality hits it is a double blow. I have always been one to plan for the worst and hope for the best. It has taken me 2 years and 5 Rheumys to find someone willing to treatment me with something except prednisone and pain meds (do to other health issues). All I want is a chance, I know it might not work. I know the damage that is done can’t be reversed. But I’m going down fighting.
We share the same appreciation for the facts – a postive attitude is only genuine if it’s based on reality. The “double blow” is so true. It won’t help anyone to lie. And I’m so tired of reading lies about RA.
If we go down it will be fighting, so true.