20 Rheumatoid Arthritis Patient Facts I learned from RA Patients
Why call them Rheumatoid Arthritis patient facts?
There were many things that didn’t add up as I started to read so-called Rheumatoid Arthritis facts. What I read was not what I experienced. The more I heard from other RA patients, the longer was the list of things I wondered about. I can’t believe I’m finally saying this aloud. These are Rheumatoid Arthritis patient facts I learned from listening to people who live with RA.
By the way, yes, I realize that I’m generalizing. I’m sorry if that bothers anyone, but I’m not making any claims about percentages. These are just things I’ve noticed. The tens of thousands of comments on this blog support these conclusions.
Rheumatoid Arthritis patient facts according to RA patients
- Patients often disagree with rheumatologists about a status of RA remission or “control.”
- There are a disproportionate number of nurses and hairdressers with RA.
- There is not really a typical Rheumatoid Arthritis.
- Side effects seem to come and go, but patients do better when they are warned, which is not frequently.
- External obvious swelling does not consistently correlate with pain.
- In some ways, not much has changed in 44 years.
- I think people with RA are usually optimistic, kind, and helpful.
- So many RA patients are diagnosed with FMS for well-known RA symptoms.
- Almost everyone I meet with RA had symptoms for years before diagnosis.
- RA patients often don’t realize that their comorbidities are due to RA.
- Most RA patients are private about how much pain they live with daily.
- Most RA patients have a higher than average pain threshold.
- Using joints often causes flare. Using flaring joints makes them worse.
- There are things that some RA patients need that they don’t get – like work accommodations, medical treatments, or better mattresses or shoes.
- Most RA patients I meet hate people thinking that they just have “arthritis.”
- Most of us have already tried eating healthy, exercise, and juicing & it didn’t help our RA.
- Many of us have had a doctor doubt our veracity.
- There are often discrepancies between the facts of our disease history & what is in medical charts of RA patients.
- Most of us have a family member who doesn’t “get it” or won’t hear the truth about RA.
- Hoarseness due to inflammation in larynx joints is not rare.
I was really tired when I made this list. Can you think of any Rheumatoid Arthritis patient facts I missed?
Recommended reading:
- Bewilderment of Early Aggressive Treatment of Rheumatoid Arthritis
- Fibromyalgia Diagnosis: Do They Know for Sure?
- What about Classic Rheumatoid Arthritis?
- New Greece Shoe Policy for Diabetics Favors Amputation
I so agree with all of what was posted in these comments. I have been there/heard them/been told them etc… Oh and I am a nurse with RA too…go figure on that one!!!????
No one “gets” it, and when they say the “do”, they really don’t, I think they just agree with you most of the time because they really do not know what to say.
Oh and my rheumy – she never gets what I tell her. I tell her all about my pain, and she says I’m stable and under control….well WTH is the pain from? Oh your fibro she says….Grrrrrr……….
GRRR so many true comments…..feel I have been a long time sufferer, symptoms appeared 40 years ago and only diagnosed 5 years ago when “flare” totally immobilized me. Thank you for your info, helps explain a lot…..Gentle Hugs to ALL who suffer this Disease.
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I agree with the statements. The one that surprised me the most was the one about “hoarseness due to inflammation of the larynx joints”. I get that all the time! It gets worse if I have a day that I talked a lot. Every time I have mentioned it to doctors they look at me like I am crazy and they don’t have any answers. I even asked my rheumy if it could be from my auto immune disease and he didn’t act like it had anything to do with it. How frustrating!
I also have to agree with the fact that doctors don’t warn us about drug side effects. There are so many that can happen I believe they are afraid we won’t take them if we are told ahead of time. So unfair!
One thing I think should be added to the list is horrible fatigue and feeling like you have the flu on some days. People think RA is only about joint pain and when I try to explain the fatigue people just don’t get it.
I agree it’s frustrating how many things about RA (like CA in the larynx) that are well documented scientifically – some doctors don’t know anything about.
I totally agree!!!! I think the flu like fatigue is sometimes the worst of all. Having to cancel plans with my family and friends is horrible. I feel so guilty. But some days I just can’t fake it anymore.
It would have been a great one to add especially since it’s “invisble” & it can come & go for most patients!
Excellent list!
5.External obvious swelling does not consistently correlate with pain.
This is the part of my visit with my rheumatologist that frustrates me the most. If I don’t have significantly swollen joints, then I must be doing well with my pain. What?? He never does a functional assessment, which would truly reveal how my pain is affecting my life.
20.Hoarseness due to inflammation in larynx joints is not rare.
Several years ago, I had severe problems with esophageal spasms. A gastroenterologist in my area could not find out the etiology for them and sent me to a large city hospital. The gastroenterologist who saw me there asked about my voice hoarseness. He said that this was from my RA as well as the esophageal spasms. My rheumatologist didn’t come up with this??
Marianne
I don’t have a good answer, Marianne, about why. But I hope we can all work together to educate so that changes.
I cannot possibly agree more about the functional assessment. I have been there, often little swelling & saying, but I can’t DO anything.
I was just recently diagnosed with RA in march. In january I woke up one morning in such horrible pain, I could not even roll over to get out of bed. This went on for weeks, I chaulked it up to my back and neck. I have a plate in neck(nurses aid) and lower back 2 rods(disc). so for about a month I put up with this and finally went to family, sent me to an orthopedic, who was extremely nice. He was very compassionate. Took xrays of back, said everything was good, but expalined to me that it might be RA,so gave me the name of a rheumatologist. He put me on prenidsone just to help ease pain so I could at least function, which did get me through my days, somewhat. My RA dr is extremely nice, she put me on metho(8tabs week) and Humari, which I have been having reactions to, we talked about switching me. I understand the back problems, but every time something was wrong they marked it up to the back and neck. When I swallow a lot of times the food gets stuck and i feel like I’m choking, they said it is from surgery. A few yrs back my right leg from knee down to foot went numb they said its from my back. I’m always tired and I was never like this as a teen, ( 50 now). I eat and it bothers my stomache, got told to change diet. I’m so sick of feeling this way, and my worse fear is having my husband have to wait on me hand and foot as we get older( he would, he does so much now) but he will be retiring soon and not how i want to spend those yrs. It is scary. I would like medicine that works and people to understand, this is not just in our head and we can not just deal with it.
This is an awesome post. Keep on fighting, Kelly. You are such an encouragement to me on a daily basis.
Thank you, Erin. 🙂
Great Kelly, knocked another one out of the ballpark! So true. I have a high pain level tolerance and usually try to hide it. But then get the times I can’t like last night. Told hubby goodnight going to bed early can’t take the pain anymore. Laid there with all my pillows and cried til I fell asleep.
Yes, the fatigue for me is the worst-it’s what keeps me from getting anything done, and the symptom my Rheumie likes to blow off every single timeI bring it up.
I don’t know why that is, Mindy. Fatigue is on every list of RA symptoms that I see. Is there a way you can ask him why he responds that way?
You need to pass this post on to every RA site:
http://idontforgettolive.blogspot.com/2010/11/rheumatology-hangups-and-why-we-are-all.html
Thanks for posting this link. My husband has been saying to me for many years, “You have Barbara Macdonald disease”. My AI and RA is unique to me as yours is unique to you. And yes, my name is Barbara Macdonald.
To Kelly…LOVE this site and all its info. I have way more insight into what is happening in my poor tired and achey body than I ever have had in more than twenty years.
I believe I may be a warrior.
I believe you are Barbara 🙂
Chelsea, I do know Melanie on Twitter & I agree it’s a good post saying we are all different. That is something I’ve worked hard to communicate.
I gotta say, I have RA for over 10 years and I don’t have hardly any of the problems listed here. Sorry, but I found this site depressing and somewhat inaccurate. It makes RA sound like the worse disease in the world. I think the fact that RA is more common in women has something to be with the weeeee little bit of “over dramatic” vibe one gets here.
Chris, I think that’s the point. It’s different for each of us. I’m glad that your RA isn’t causing you some of the difficulties it causes others. But for others it *is* severe and affects every part of our daily lives. Like KT, I’m on enough medication to drop a horse and still have pain and mobility issues.
And frankly, stating being a woman is a cause of what you percieve to be overdramatic is kind of insulting.
I do hope that you continue to have an easy time of it with your RA. But please reserve judgement on other people until you’ve walked in their orthopedic shoes.
Let’s hope your girlfriend/wife/mother/sister never gets ill with any disease. Your compassion (for women who complain more – as you perceive) is underwhelming and I hope someone that loves you never has to feel your obvious contempt.
I think you said this to get a reaction, but with this group I believe you’ll mostly find people relieved for you that you don’t suffer as much as they do. It’s like we chuckle at your blissful ignorance.
What do you find to be inaccurate?
What a treat! A powerful illustration of the sexist attitudes we face from someone who claims to be “one of our own.” Wow, you’ve put us in our place, SIR.
To assume that because you haven’t experienced something yourself that it must not exist is the epitome of self-centeredness.
By default, you HAVE experienced one item on this list because you have benefitted from #3: There is not really a typical Rheumatoid Arthritis.
As someone who has had immense variability of disease activity for 23 years, with progression being the only constant, I would be far too humble than to publicly make a statement that so foolishly challenges destiny to show me the error of my judgments.
Good luck.
It’s kind of a shock to encounter a member of the RA community who doesn’t “get it” as completely as you, Chris. I certainly hope none of the women in your life do not develop RA – because you would not help them at all. And I hope your RA doesn’t get any worse – or you may find yourself having to ask others to help you with things.
As a nurse, a researcher, the daughter and granddaughter of women with autoimmune diseases and a person with RA, I have to say that medical research and the experiences of those in my family do NOT mirror your assessments of women with RA. My grandmother shuffled in bedroom slippers for the last 20 years of her life because of the pain from gouty arthritis. She prepared meals for us and did not ask for any assistance. I knew she was in pain – a lot of pain, but she didn’t accept my offers to assist her. My mother developed the mutilans variety of RA – almost helpless within 6 years from onset, in a nursing home at 11 years from onset after struggling for 5 years at home, and dead 15 years after diagnosis at the “ripe” old age of 59 – from complications of RA. Her spine “fell apart” from the use of high doses of steroids and the effects of the disease. I was at her side. I began developing signs of RA a few months after her death, and had a variable course. I was able to function, to teach, to get a PhD, and to work and do research for nearly 25 years after onset, but finally had to quit work due to fatigue and pain issues. I started a business from home, and have been able to continue working for nearly 15 years.
My precious husband has more compassion for people with RA (including his sister) than you have for your compatriots. He sees and knows how much we have worked at being capable and functional and to not complain.
You, Chris, whether a man or a woman, are a cad. I will pray for your enlightenment and that God will soften your heart and your stiff neck.
Chris ~ come live in my shoes for a month or two and then let’s compare notes again. Deal?
Any disease, when one suffers from it, is the worst disease in the world! I have found mucho hope here Chris. Your a weeeeeee bit sexist. Probably a Republican.
Chris,
I have to disagree with you. You must have a very mild case then because I was slammed hard and fast 5 years ago and although I have my good and bad days, everything listed applies to me. Each person is different. This disease is unique to each. So I would appreciate it if you wouldn’t down play what others are going though just because you don’t have things as bad. I can’t open jars or bottles. I can’t get out of bed some days. Some days I am lucky to walk. And this is all while taking pain meds and biologics. I have a high pain tolerance. Gave birth to 7 kids, 3 of which were c-sections and I pretty much got back into the groove of things 1 week later. This disease has kicked my butt. Please don’t call us “over dramatic” because you don’t live what we live obviously. I am happy for you but please don’t downplay others.
Chris, I do not have many grown up words i can use with you right now. BUT if you didnt need support WHY ARE YOU HERE?? You obviously are doing fine without all of the info and support this site has to offer. LUCKY for you. How sad you can point a finger to that which you do not know.. I will not tell you how bad I have it as it will fall on deaf ears. My mother told me something If you dont have something nice to say DONT say anything at all.. MMKAY>
Have to add my 2 cents as well. I was living a relatively normal life with my RA until this year. I’ve had RA for 13 years. Suddenly there are huge joint erosions, the loss of my left ankle and r. elbow. Severe spine pain and huge fatigue. I hope you have a group as wonderful as this Chris to support you if changes occur in your body. I’ve had to reorganize my life completely and grieve the loss of many things. Consider yourself lucky and blessed today. I would also suggest some reading in Compassion.
does anyone get overwhelming, I’d say hot flashes, but they last longer and its over my entire body?, also this very achey and a tingliy feeling throughout my body, they come and go all during the day. any advice or help
Chris, I’m happy that your RA is mild and/or well controlled with medication. However, it seems a bit shallow to stop by here, throw a rock, and then run. For what purpose?
This site has been a goldmine of information for me. I rarely post, but I read it every day, and I thank my lucky stars for Kelly and the tireless work she does on our behalf.
Is RA the worst disease in the world? Of course not. But it IS damn painful and debilitating. It would be easier to psychologically deal with this disease if it were not for the negative public perception that RAers are whiners and complainers. For you to feed into that is shocking.
I don’t share the fact that I battle RA, not even with my own parents. This site is my refuge, where I can connect with people who UNDERSTAND, and who don’t pooh-pooh my struggle.
These people are warriors in a way I hope you never understand. However, if your disease progresses (and it surely will), remember this awesome site. In spite of your thoughtless comment, I’m sure you will be welcomed here with open arms.
Laura,
Amen! I couldn’t have said any of it better or even as well. Thanks for replying and saying everything I was thinking.
Hugssssss Laura ~ very well said.
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As the wife of a man with Psoriatic Arthritis, let me assure you women with RA are not being dramatic about their symptoms.
Thanks for putting this list together, Kelly! There were some things I hadn’t heard of (nurses & hairdressers – interesting!). As one with well controlled RA, I do still know what it’s like to experience some of the crazy symptoms, because I have been there – during diagnosis, a freak flare and random bad days – and I do have to say that the people in this community are truly heroes in my eyes. The vast majority of the people I’ve come across are strong, kind, compassionate, and true warriors, despite the daily battles they face with some hardcore RA symptoms. Sometimes I don’t know how you guys do it! I can’t say I’ve come across any drama queens, just some people sharing the truth about their lives. Can aspects of this disease be depressing? Yes. Do I get sad thinking of what RA has in mind for my future? Yes. That’s why I come here. Hope, encouragement, and information I need to fight my own battle. Thanks and love to all of you!
I stand by the fact that you people are drama queens. Sorry. I tried to see it another way and perhaps rectify my insult but I can’t. This is because of the from page of this site the is an article about RA and heart disease. It actually says something like this. “RA kills nearly everyone who has it” BAAAAHAAAA thats absurd. That is in NO WAY true at all. OMG, people lighten up. Seriously.
There is a wealth of scientific literature on the link between RA and heart disease. Perform a Google Scholar search on “rheumatoid arthritis heart disease” and you will get dozens of scientific journal articles discussing this very fact. It is a known comorbidity with RA and it does result in reduced longevity in people with RA. You may argue with the way it was presented on this blog, but you can’t argue the fact that it is real.
I hesitate to get involved since I’ve already written about 450 pages refuting the beliefs that cause such attitudes as Chris’ and since I’m about 30 comments and 20 emails behind.
I feel comfortable with what I’ve written and how it’s presented. Knowing it is read by medical professionals & organizations as well as industry, I still stand by it.
Unfortunately, even those like “Chris” with mild RA joint symptoms, are often affected by the systemic toll of RA, especially on the heart and lungs. However, because of the rampant ignorance of the scienctific facts about this disease, Chris’ doctors might not even blame RA if that happens.
Yes, Kelly. I was misdiagnosed with COPD for ages. It was my primary care doc that kept questioning how someone so young and smoked for such a short period of time, could end up with such a chroic disease. About two weeks ago, I went for my annual check up, my lung functions were at their highest, my rheumatologist had given me all current blood work and tests. My endo had done the same thing. He sat back and said, I can no longer diagnois you with COPD, your lung functions fluctuate too much, if it was COPD, it would be a steady decline…yet yours improve consistantly year after year with these asthma flare ups. He said I’m changing it to asthmatic brochitis. I asked him about the scarring on my lungs, he said that R.A. was a marker for the scaring as well as the issues I’d had in the past for pleural fluid buildup (not to be confused with pleuresy).
I also have issues with liver functions too. :-/ Thank goodness…knock on wood…heart is still going strong as normal. But bp is insanely low. But I think that is endo related.
Interesting…although most on this thread assume you, in fact, have R.A., in your comment you only discount the link between R.A. and heart disease. Then prior decide to insult our blog, by saying we are being “overly dramatic.”
I think it’s ironic that your comment was posted the year I was formally diagnosed. That year for Easter, a friend gave me a jar/bottle opener for people with arthritis and I scoffed at it, figuring it was a nice gesture, but hey I was in my early 30’s I was never going to need some kind of
“grandma” utensil in my kitchen.
I was a type A, independent, single woman. I had faired 3 back surgeries with one wound dehisence, and abdominal hysterectomy that dehissed to the abdominal wall. Not a good thing when you live four flights upstairs. I had to heal from the inside out, and still manage to transfer all current classes online or risk losing my financial aid and merit scholarship as I was a 4.0 student.
I tolerate a lot of pain. I was a military wife, and I’ll tell you that pain is probably the least of my concerns. It’s when my joints lock. Like when I couldn’t open my jaws and had to go to the emergency room to get a Kenalog shot (in case you’re not as medically knowlegable Kenalog is a long acting steroid) then they gave me a short acting steroid called Salu-medrol. By the time I left the E.R. I could open my mouth, the joint was still a bit sore, but I was able to eat by the time I arrived home.
Some people with really bad R.A. really aren’t as concerned with the pain, it’s not being able to move the joints at all. It’s the fever. The flu like syptoms. The overwhelming fatigue. And it can hit any joint at any time. I’ve had it hit my throat and be hoarse or a few days until my steroids kicked in. My hips, knees and feet are the worst. Sometimes it’s like they don’t want to communicate with my brain no matter how much I beg them to work, because the joints are clicking in and out of place and it’s hard to walk.
But, Chris I will tell you this much…”pain is fear escaping from your soul…” So I don’t care how much pain I’m in, it’s my motivator to keep on going. It’s how I was taught by my ex-husband, living in a military home.
Never mistake whining for information, compassion, and sincerity. Which is what people with Rheumatoid Arthritis seldom, if ever get.
But, I was also always told, “everybody needs a hater. It’s a hater’s job to hate. So if you have to hate, then hate me, buddy, ’cause you know my hair is luxurious.” So, if you’re just here to hate…it’s sad, but hey it’s motivation for us, because hate turns to educate. And there’s plenty of that.
Lastly, Chris, all I have to say is, OOrAH! YOU MOTIVATE ME! Semper Fi! I will keep on going until I’m clawing my way to my destination or goal. I hope my fellow warriors, keep clawing with me! 😉
Dear Chris, I am privilaged to read from the one person who knows every moment of my life well enough to to pigeon hole me into your narrow minded concept of women with RA. I am sure the federal government see me as an “over dramatic” women as they send my disability check each month. As soon as I get the batteries on my power wheelchair charged you and I should go out for a cup of coffee to talk over your amazing concepts and thoughts about this woman’s disease. Very relieved to read that you kind of RA is no problem for you at all. Hoping you never live what all of us have here.
Kelly, you hit the nail on the head with a lot of those points/facts.
I recently had a public fight/problem with my sisters (long story – won’t go into it), but at one point I talked to one of my sisters and she said that maybe I should consider counseling for problems I had in my past (in 20 yrs, I’ve had about 15 yrs of counseling) and it may help my medical problems, and the way I feel about myself. I guess that would be the family member who doesn’t get it. Who thinks that I intentionally gain weight, don’t exercise vigorously, etc because I have low self esteem. *laughs* I was running/walking up until bedrest with my last child, however I was having a ton of RA type problems before, just not as prominant. Once he was born, my pain went through the roof.
I wanted, so bad, to say “Yep, sis, my autoimmune disease, if left untreated will kill me sooner than later, is only around because of what happened and because I’m not in counseling.”
*rolls her eyes* As for the hiding of pain, I do that all the time. Now that my husband is back to work (I’m glad he is) I have to ignore my pain and can’t take the pain pills because they make me loopy.
I just resolve the fact that there are some people who just don’t and won’t get it. And, I look forward to the evenings and weekends when I can give into the pain and take meds for it.
Although I am appalled by the callousness of “Chris” and his/her replies in this community, I have two things to say…
#1. Thank you Chris for illustrating perfectly what so many autoimmune patients must suffer through as they struggle with their disease – those who don’t have it don’t understand it. You may have RA, but you don’t have the pain and disability many of us here have, and are obviously too short sited and self absorbed to care about anyone else’s pain or disabling experience. I feel sorry for you, because RA is physical and we can transcend our pain and infirmity and live beautiful lives despite it, but folks like you cannot transcend what you suffer from. For those who come here and don’t understand what it is like to be picked at and not understood because of their disease, you are the perfect example – live and right here in our midst.
#2 I will not further dignify his/her ridiculous and obvious “troll” responses past this, which Kelly is much too dignified to say herself: Trolls love to come to sites incite and upset, and it is the very lowest of these life forms who choose to pick on sick people – particularly those who choose to be strong enough to empower themselves for better health. Troll/Chris, Please go back under the bridge from which you came.
Off my soapbox…
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Sorry you folks think i’m a troll. But for the record. According to Johns Hopkins lifespan in RA patients is only slightly reduced. Perhaps 2-3 years shorter then average.
Well Chris. I just have to say one thing to you…”Perhaps 2-3 years shorter then average.” It’s actually than. Perhaps 2-3 years shorter THAN average.
Grammar is so important.
Seriously. Now thats just being childish.
Chris…….RA has stolen much of our lives from us, often we experience excruciating pain and the future is very uncertain because yes death can be a consequence. Sadly, we feel the need to down play our symptoms to others even our doctors, even ourselves, for fear of the reaction we would get (The same reaction you expressed) and because we “don’t look sick”. I am sure that contributes to the lack of understanding with regard to this disease. I know everyone is reacting to your comments because it feels like such a slap in the face that one of our own would betray us. We are not being drama queens or anything else. This is a place, maybe the only place, we can feel safe enough to tell it like it is and feel cared about by others. You should know that if you should ever experience this disease in the disabling way that many of us do and you are disheartened and dispairing we will welcome you and support you.
Thanks Tracy. I’m sorry for causing such a stir here. It just seems like everything here is negative. Am I mistaken in the stats that claim the vast majority of RA patients fair very well these days?? That MOST RA patients continue to carry out day to day activities for most of thier lives. 95% do according to the arthritis foundation. This site seems to imply that disability and severe disease is almost certain. I just don’t believe it’s that dire at all.
Chris, I think it can be dire for people. It is a systemic disease so it can damage the heart and lungs. People can die but usually they suffer for a long time first. I think often the stats are talking about controlling serum levels of inflammation markers and not necessarily quality of life. Probably most of us are not yet at Level 3 or 4 in terms of disability, but most will experience enough disability within 10 years to be unable to work. It IS better now than it was in the past in terms of diagnosis and treatment. But there is NOT a cure and it is progressive. Personally, I was recently diagnosed and while I am not disabled yet I can’t do things the way I used to do them and I always have pain. I mean some days I can’t open a ziploc baggie to save my life or I can’t put on mascara. Some days no matter what I do I cannot get comfortable. Is that life threatening no…. but a day filled with all of those little frustrations can get you down. Of course, I have take your breath away pain at times too.
Chris, people here are my biggest cheerleaders, a valuable source of support and strength, often very funny. We try hard to put on a brave face to the outside world and it is nice to be able to let down our guard here and know people get it.
“people can die, but usually they suffer for a long time first” Now thats the kinda thing I don’t get. People CAN die, but certainly the vast majority do not die. The average life expectancy for RA patients is only slightly lower then the generally population. 3.5 years shorter for women. 5.5 years for men. Is that shorter, yes. Is it short enought to announce that RA is deadly, of course not.
I’ve been intending to e-mail you. We touched base a while back regarding my seeing Dr. Kalidas in Orlando. He did more testing, and I don’t have R.A. I have late stage Lyme Disease. I don’t know whether to be happy or cry. 🙂
Chris, NO ONE gets out of this life alive. It’s HOW we leave this life. The deaths from RA do come from other causes on death certificates – heart disease, lung disease, stroke, renal shutdown. But the “due to” – which is the secondary cause – is rheumatoid arthritis. Any disease that attacks the linings of the heart, blood vessels, lungs and kidneys is deadly. It is a dire disease. I’ve watched people dying from autoimmune diseases ever since I was a student nurse back in the early 60’s. Those deaths all involved long suffering. I remember the first as if it were yesterday.
Do MOST of us have a “long suffering” death? No. Many of us will die suddenly from a stroke or massive heart attack – but that event is caused by the underlying inflammation of the blood vessels.
Autoimmune diseases include such diverse entities as pseudotumor of the orbit (eyeball) (an inflammatory disease behind the eyeball that causes exquisitely painful swelling and bulging of the eyeball out of the socket; causes blindness if not treated early and aggressively), Vasculitis (inflammatory changes in the blood vessels leading to loss of circulation to various parts of the body such as feet, legs, fingers, heart and brain; disabling), Polyarteritis Nodosa (an inflammatory disease of the arteries, very painful, very deadly and disabling), Rheumatoid Arthritis (but you know EVERYTHING about that – or do you?), Lupus erythematosis (another inflammatory disease that attacks critical tissues in the kidney, heart, joints, and blood vessels; disabling), Ankylosing spondylitis (closely related to RA, affecting the spine, pelvis, hips, knees, ankles and feet; can cause restriction in breathing and lung function; very painful, disabling), Psoriatic arthritis (closely related to RA, often called “RA with psoriasis” because the joint disintegration is nearly identical; but the skin also is inflamed and flakes off leaving red patches that are tender and sore – psoriasis – particularly around the joints of the elbows, wrists, and knees), uveitis/iritis (inflammatory attack on the tissues of the iris and sclera of the eye leading to severe pain and blindness). Shall I go on? Just because someone has one autoimmune diagnosis doesn’t mean that other tissues in the body are not being affected – attacked, destroyed – without major symptoms.
I have RA. We are watching my cardiac status carefully because I have intermittent chest pains with episodes of faintness. No abnormalities on the EKG or echo, but that doesn’t mean the covering of my heart (pericardium) is not being affected. I have pain on deep breathing from time to time, so we are watching that. No RA nodules in my lungs at this point, but that does not mean the lining and covering tissues of my lungs are not being affected. These are things that are called “subclinical” and frequently cannot be detected until something dire happens.
None of this, however, addresses another thing you seem to have a disconnect about. Disability. Within 10 years of developing RA, most patients become disabled and are not able to work. RA is one of the few diseases that is on the “automatic qualify” list for SSI. Now the SSI offices may make you go through lots of hoops and will try to find docs that will dispute the RA diagnosis – in order to prevent you from receiving benefits. That’s why those of us with RA who need SSI need to get a good SSI attorney.
I used to be able to type 80 words a minute on a manual typewriter, and about 120 words a minute on a computer keyboard. With RA, however, I’m down to less than 40 WPM on a computer keyboard, and would not be able to press the keys on a manual typewriter. Because my finger joints “freeze” at inopportune times, my accuracy is deplorable. Thank goodness for spell-checkers!
I used to be able to wear spike heels all day. I LOVED my shoes. Now I’m lucky if my feet will tolerate Crocs. And I can’t stand more than about 5 minutes without the sensation of nails being driven into my feet.
But, I’m well controlled according to my bloodwork. It’s just that I still have disabling pain. I was so proud today – I was able not only to make coffee this morning (my one daily task), but I made a cream-cheese-raspberry omelet. It wasn’t a Julia Child omelet – I can’t jerk and flip the pan like she could – but it was tender and tasty. This was a milestone because I have not been able to do that much for over 2 years. I include these personal notes only to “humanize” statistics. I am totally disabled. I cannot walk more than about 100 – 200 yards. If a store doesn’t have an electric cart, I can’t shop there. I can’t afford my own scooter. Medicare and supplement won’t pay for an outdoor scooter – only one for inside my house – and I don’t need one for inside my house. There are thousands of people in my condition. Or in Kelly’s condition. Or in Katie’s situation. Or in the condition/situation of any number of people who respond to this blog, and to the hundreds of blogs / groups / FB pages / fora / e-lists on the net.
If you open your eyes and ears and LOOK and LISTEN and SEE and HEAR, you would discover that many people in your life are also affected. They push themselves to function, and pretend all is well. They put on a bright face – especially to people like you who would tear them down and go for their most vulnerable spots – and smile despite pain, disability, and overwhelming fatigue. Look underneath.
Someday, I hope you will come back here with your consciousness raised, and apologize to us – the people who have the same disease you have and who are dealing WELL with it. Who just need to have a safe place to “let down” for a while. Thanks to you, this place has become a little less safe.
Good going, DORK!
Oh, Chris, I have held my tongue here, but ENOUGH! Really! Why do you keep coming back on here to berate us with your rude commentary and insult us? Seriously, why? What are you trying to accomplish by hurting others? I don’t understand.
You’ve made your point. You don’t believe us. Fine. But, if you truly do have RA or any other autoimmune disease, there WILL come a day when you experience at least one symptom that is bad enough to make you rethink your judgments. What will you do then?
Kelly has stated facts. You have quoted statistics. Those two are not the same. If you looked at my charts, the *numbers* would probably fit your stats. However, if you lived an hour in this body, you would feel the facts. I am glad your symptoms are mild to non-existent. Perhaps you’ve been misdiagnosed. Perhaps you’re in remission. Or perhaps your RA has not yet reached its height. Regardless, show some respect.
Chris,
You could have just said you disagreed with the list but you chose to belittle the people’s experience with RA while using a sexist undertone of “whiney women.” As a 27 yr old male who played high school football and basketball, and was into physical activities, RA has turned my life upside down. My index fingers are deformed, I can’t make a fist, I have severe osteopororis in my knees that required surgery two months ago, etc. So as a male, I can attest to the pain of RA. As a human I feel empathy for those going through, regardless of how severe. You stats about the lifespan are varied; some say 5 yrs, some say 10. The point of this website is to show that there isn’t enough research done to quantify fully the effect of RA, while providing comfort and education. The truth is that half of the people with RA will be disabled within 10 yrs, if that alone isn’t serious then I guess I just don’t know. Hope you have continued good health Chris, bc I wouldn’t wish what I’m going through on anyone…
Chris, I don’t think there is much more we can say except to wish you the best. You can be “right” if you want to be right. We have tried to help you understand but you are so aggressive. I hope that your denial doesn’t ultimately hurt your own health. Could you just please stop? We have enough to deal with in our lives. We don’t need this honestly. Peace to you.
Chris
I spent the first few years of my diagnosis in a blessed metha – supported remission and had a nasty shock when the disease became more progressive. I’m now a warrior. And mostly a secret warrior at that!
I hope and pray that your disease does not progress and that you continue to engage with your current beliefs. I only ask that you respect the views and feelings of the incredible people who post to this site. Kelly has been an absolute inspiration to me and will continue to be so – along with so many in this community.
Jane
I would have to totally agree with Turtlemom’s reply from a health profession standpoint. My friend had severe Lupus for 13 years and then passed away at the ripe old age of 28! Her kidneys were needing a transplant from the Lupus attacking her kidneys. Her kidneys caused her to go into congestive heart failure and guess what? Her death certificate reads “cause of death, congestive heart failure”. Lupus (an autoimmune disease, which is what RA is)was never mentioned on her death certificate! She technically died from Lupus but she will not be among the statistics of people who died from Lupus because her death certificate doesn’t state that.
My RA is starting to complicate my lungs only after 5 years. I have several lung nodules. I pray every day that I live a long life for my children. I am only 41 and my youngest is 5.
Please Chris either have some compassion here in our “safe haven” or go elsewhere. Most people don’t even know I have health issues because I don’t speak of it and put on a happy face. This is the case for most of us. This site provides us an outlet so don’t think we are all running around being over dramatic.
Chris, evidently you have never lost someone who had RA. I can tell you for a fact it killed the only other member of my family that had it. This was only after her feet and hands were no longer of any use to her because they were so drastically damaged. I can’t not imagine how horrific her pain was. It also took the life of my bother-in-laws mother. Either you have some personal vendetta against people with the disease (too bad it isn’t against the disease) or you are just killing time.
Baaahhaaaa. No one makes it out alive someone said!!!! Now thats halarious. Yes, you WILL live 5 years shorter then the average person!!! OMG. Another stat you guys throw around thats absurdly wrong is the work disability. Several times, you folks keep saying MOST people can’t work after 10 years. Entirely a FALSE statement. It’s well know that only app. 50% will become work disabled. Thats half, not most. DRAMA DRAMA. You people are pathetic.
Hello. I’m another Chris. Not the one from earlier. I came across this while researching Psoriatic Arthritis which i’m been fighting for about 3 years now.
I was surprised to read about the mortality rates! It scared me quite badly. I’ve asked several Rhuemys and pcp’s along my journey if PsA affects organs or increases death, they all said no?? They did all say heart attack risk is increased however.
I know the joint sumptoms of PsA and RA can be the same, but does PsA pose the same risk of premature death?? I’m gonna be extremely angry at alot of doctors if this is the case!! Anyways, I wish you all well.
“Chris” or whatever your name is, you are using the same computer as “the one from earlier.” Seems at least one of the stories is not true which is not surprising since the rest of your “facts” have been lies as well.
Hah! The powers of website/blog admin. You see all, Kelly! I thought ‘trolling’ sites was a thing of the past. Apparently, it isn’t. How sad is that?
And yet, we’re called ‘pathetic’.
He/she/it will leave eventually when there is no longer a reaction to the ridiculous statements.
Don’t feed the troll.
Slap on that smiley face, Warriors and have the best day you can have!
Thanks, Kelly! This is one sad human being. I assume it is human, definitely not humane and can’t even accuratly identify the gender. I know most are just tired of this silliness and I believe you just showed him/her that you are smarter than the average bear!
Let’s all stop responding I think “Chris” may have mental health issues or substance abuse issues or something. Seriously, I think there is something wrong.
I just found your site, and I find it very interesting. There’s a great deal of information here, and I applaud your efforts. It’s so important for us to connect and encourage each other.
Personally, I’ve had RA for over 20 years, I’m now 46. I was diagnosed when my kids were toddlers. My R.A. was extremely aggressive and in no time I was a mess, having trouble with everyday tasks.
The rheumatologist I was referred to thought he could give me a few ibuprofen and send me on my way. I went to the top of my health plan and made a nuisance of myself – alot. I was reassigned to the head of rheumatology, who is also the medical director for this health plan.
My rheumy is amazing, and we have a very open relationship. I call the shots. He makes recommendations, and tells me what my options are and what all of the side effects and benefits are of each choice. He’ll tell me which choice he recommends and together we decide what to do. We never go in any direction I don’t want to and we’ve changed my treatment plan several times at my request.
I agree that every person’s experience with R.A. is different, there’s no “typical” experience. For me, exercise and eating healthy make a huge difference. If I’m going to hurt anyway – why not be in control of what I can? I find that with my own R.A. it’s “move it or lose it”….in other words the best way to LOSE function in a joint is to stop using it. So, after talking with my rheumy, I joined a gym 3 years ago. I don’t do anything high impact. Mostly elliptical and bike, along with swimming and exercises in the water. I lift tiny weights, 10 pounds or so on days when my hands and wrists aren’t messed up. I watch my weight so that I don’t place unneeded stress on my joints, and it also helps my energy levels. It’s not always easy but when I don’t go I feel worse, so I try to make it 3 times a week. I just choose the activity of the day based on how my joints are that day.
I still work 40 hours a week. It’s not easy and eventually it’ll change, but I’m not going to stop before I need to. Why would I limit myself when it’s not necessary yet? I’m glad I can still support my family, and paper pushing in cubicle world isn’t really that hard.
I grew up watching my dad suffer with R.A. my entire life, he was a steelworker and he worked circles around most of the healthy guys he worked with – they even said so. Dad didn’t have many options, he needed to support us and didn’t have the education to be able to do less physical work. Watching him taught me about overcoming obstacles and becoming the most that you can.
Thanks for having this website, it’s a great resource.
Thanks Beth. Your story is one more example of how different we all are. I agree with doing as much as we can each day. I still do live that way too, leaving it all on the field as they say in sports.
Hey, people! I like Kelly’s summary of what she has learned. Every day I come and take peace that I am not alone, that everyone’s experience gives me new incite. I don’t feel so “whiney” at home and feel more empowered. Everyone, I applaud you for making it outta your RA diagnosis, and looking on the web for support, this is a move toward positive attitude. AKA looking forward and onward not inward and stagnant. I can go to my Rheumy and feel empowered that I am armed with knowledge about what my options are and what he is saying. I am empowered that I can go to work and know as a general rule what to expect with my disease from those that have it. Are experienced with it. I am empowered to know that when I am alone, and my joints are taking too much of my brain time, I can read peoples ways of coping and maybe take a gift from their ideas. I am empowered that we don’t sit on our brains and use what we are given and fight. My life mentally and physically is better for it. I thank you all.
Kelly you are my hero.
Thanks, Trish! :rainbow:
I don’t have RA (though I’ve been tested multiple times) I have 2 other autoimmune diseases .. lupus (with my reactions being very close to RA) and Myasthenia Gravis (a muscle related autoimmune disease)
Much of what you’ve said here could relate to lupus as well …
the fact of the matter is ..
*people don’t get it
*doctors believe more in what their text books say than what they see with their own eyes
*doctors believe more in what their text books say than what their patient is saying
*The reality is .. my Lupus and MG never read their medical text books and react the way they choose to react based on my own biology, life circumstances and interaction of comorbidities.
The “Chris” from earlier sounds a lot like “Mark” from the Fibromyalgia Funhouse site that I am a member of…someone who just wants attention and the only way they can get it is to belittle what others have to go through…such a sad existence…
21. Most patients with RA also suffer from lack of sleep. This is usually due to pain.
22. RA sufferers have to go about a normal “day in the life” when they are sore and swollen.
23. I have yet to meet any RA patients that have said they take the same mix of medications and have the same result. It seems as though every case is different and so is every “cocktail” of drugs.
Just my thoughts 🙂
Thanks. 🙂
Oh Chris, you should not speak unless you know your facts. I am a physicain. People with ra are as likey as diabetics to suffer from heart attacks strokes, bc of chronic inflammation. They have a proven shorter life expectancey and a higher chance of cancer particularly lyphoma. This is from disease alone. The biologics have their own dangers that are significant. If you are not in pain fantastic! You are still at risk for the above if your diagnosis is accurate. If your rheumatologist and or fp,interinst is on the ball you will be screened frequently for additional cardiovascular riskfactors and treated aggressively. Information is power and you will use it if you are smart. By the way if you should develop chronic pain whether from ra or another condition I hope someone has more empathy for you than you have demonstrated for this group.
The swelling is almost welcome at times, so that others can visually see what I feel- like a validation of sorts. I feel this way because it is when I am least swelled up that it hurts the worst.
The single most important thing that Docs can do to help their patients is LISTEN and believe what is said.
Well, yea. And spend another minute or two to actually check joints, or check more than one joint. Don’t assume by visual inspection alone, although swelling can vary from hour to hour much less day to day.
Kelly, Bless your heart for being courageous enough to tell it like it is. Your list brightened my morning and was just what I needed today. Yesterday I saw a very nice, kind but new doctor who I could just tell was questioning my RA diagnosis. That isn’t always a bad thing I know and yet all the doubts and fears creep in and I fear I’ll be blown off down the road. I couldn’t sleep worrying about it. Today I am again made stronger by all the voices on this web site. Here is a new question: Why is it insurance companies will pay for custom shoe orthotics for diabetics but they considered them unnecessary for RA patients? I can’t walk any distance without custom shoe inserts…not even to the bathroom at night! I’ve spoken with the INS co and they won’t talk. How do we change that?
Donia, fantastic point! I think that the reason is that there has not (until now) been anyone to represent our views, so the need is not documented. This is true of many different needs that RA patients have and this is something that the Rheumaotid Patient Foundation (at rheum4us.org), our young non-profit will address. We’d love to have you on board there to discuss things like this as our new members forum kicks off soon – and volunteer opportunities. Meanwhile, it’s great to participate in dicussions here like you just did – to document the issues for the many who read behind you – even those who work in medicine, administration, and research. It does help.
Being newly diagnosed, I have found this website not as “Chris” said “depressing” but supportive. Yes, the news can be a bit bleak an depressing but how much worse would it be if I felt the way I feel and there was no one else that understood. Or worse, I was suicidal because I believed that it must be all in my head (as many so wrongly assume). The worst part is that I was one of those people. True confessions. I was strong, lean, young, ate nuts and fruits – nothing processed. I believed it was a mind over matter, yada, yada. Well – I am on the other side of the fence now and one thing that it has taken me a while to accept is that “it is not my fault”. My attitude does make a difference in how my day may go but it isn’t going to make the pain, swelling, fatigue and disability go away.
PS – on Chris, I work with a man that has RA. I have tried to ask him when his pain went away and other questions. He told me he never really had pain but some stiffness that didn’t seem right. The blood test said RA, he takes mtx, is fatigued but generally couldn’t relate to my feet, hands, hips, shoulders etc.
PS – on autoimmune, Just finished a book by a male MD/PhD that had a belief that the reason 1 in 8 women had autoimmune disease had to do with the biology that she can carry a 50% antigen for 9 months. This, as he claimed, made her chemistry and immunity more complicated than a man’s. This may also make it more difficult to treat a woman’s immune disease than a mans.
Boy, am I glad I found this site! I was recently diagnosed with RA, but found that some of the most personally disturbing features of this illness were, for me, the fatigue and mental exhaustion. You cannot simply look at my joints and diagnose how I am doing. And I do feel worse after I am active, even though Drs etc tell me to exercise. It’s also great to find a site that gives more information than that given in most patient leaflets & websites. Thank you Kelly
Dear Beverly, I took a rare day offline & missed seeing your comments until now! So glad you found us!