3 Myths about RA that are Rheumatoid Arthritis Facts
The blog will be a year old on Monday. I’m using this time to reflect on some things that struck me this year.
Some conventional Rheumatoid Arthritis facts are also mythical
RA is such a tricky disease that even Rheumatoid Arthritis facts can be a bit ambiguous. Here are three accepted facts that are full of mystery.
Rheumatoid Arthritis fact #1: RA is a hand disease
Some rheumatology docs take one glance at a patient’s hands to determine a diagnosis or a remission state. I hear it all the time from patients and I’ve seen it firsthand. So what’s up with that? (I’m hearing Kenan Thompson of Saturday Night Live).
Many of the old books and certain older docs do depict Rheumatoid Arthritis as primarily a “hand disease.” That can be frustrating for new patients whose hands are not yet affected. Rheumatoid Arthritis can start in any joint – or even somewhere else in the body.
Anyone who spends very much time listening to RA patients will quickly see that Rheumatoid Arthritis isn’t just a hand disease. So, where does this myth come from? What is the truth behind it?
It’s this: Rheumatoid Arthritis seems to always get to the hands eventually. There are some patients who escape with elbows or ankles or some other joint unscathed, but not hands. And this: once RA attacks the hands, the damage can seem more obvious and aggressive, perhaps because the bones are tinier. Rheumatoid Arthritis definitely does have its sight set on hands. (I have a theory about this that we can explore one day.)
Rheumatoid Arthritis fact #2: All RA comes with morning stiffness
Again, this one is in all of the books. I’ve never read a medical website about RA that did not list morning stiffness as one of the significant and defining symptoms of the disease. However, it’s a different story when you talk to people living with Rheumatoid Arthritis. They describe “morning stiffness” of varying frequency and duration. It can be regular or occasional.
There are some whose morning stiffness mimics that in the reports, but why so few? Because the articles are the interpretation of an invisible symptom of RA that non-patients do not understand. They should have a patient editing those pages.
Joint stiffness is a distinct Rheumatoid Arthritis symptom. It may be worse in the morning for some patients, but others say it is worse in the evening as a result of moving all day. For some patients, stiffness is a problem all of the time. One patient recently commented about becoming stiff any time she sat still for a period of two hours. Personally, my joints become stiff after two minutes in a static position.
Perhaps “morning stiffness” is like so-called “morning sickness” with pregnancy. I’ve been pregnant a few times and never had “morning sickness.” However, I was nauseous quite frequently during the first trimester at a variety of times of the day. There are other possible explanations for the discrepancy. Sometimes, I also wonder if stiffness before usual morning medicine doses is worse in patients using long term prednisone since their natural morning cortisol surge does not occur.
Doc Space Heater was a proponent of stiffness-only-counts-in-the-morning school of thought. When I responded to the ubiquitous “How long does your morning stiffness last?” question with “I have stiffness all day…;” Doc Space Heater wrote in my chart “Pt has difficulty telling whether she is actually stiff in the morning.” It was interesting that the American College of Rheumatology (ACR) removed “morning stiffness” from the list of RA diagnosis criteria last fall.
Rheumatoid Arthritis fact #3: Early aggressive treatment for RA
Okay, this one would be the Little Engine that could. It would be a fact if only it could be. There is some evidence that early aggressive treatment of Rheumatoid Arthritis slows the progression of damage in some patients. There are two problems though: 1) aggressive; and 2) early.
Aggressive treatment requires doctors who are willing to treat RA aggressively. Some rheumatology doctors are sticking with the old pyramid approach to treating RA the way some passengers stayed on the Titanic. They have more faith in the old books than the new medicines.
Early treatment of RA requires early diagnosis. During the past year on the blog, we have discussed numerous reasons that early diagnosis is difficult. Last year, I wrote an article for Health Care Professionals Live about why early diagnosis of RA is elusive.
Recommended reading:
- What Is the First Symptom of Rheumatoid Arthritis?
- American College of Rheumatology Redefines Rheumatoid Arthritis, part 1
- What Is it Like to have Rheumatoid Arthritis? Part 1: The Usage Principle
- Rheumatoid Arthritis Doctors’ Interviews
- Pyramid Approach to Rheumatoid Arthritis Trashed
- What Is the List of Rheumatoid Arthritis Joints?
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Congratulations on a year of blogging. I do so appreciate your words even though I don’t always comment. I get frustrated with the morning stiffness thing. I don’t usually have morning stiffness, but have stiffness throughout the day and particularly at night. I also don’t have red joints, but they are swollen at times.
Right now I feel horrible. It’s been a week of pretty bad pain. Not sure if it is weather related. It’s been cold, rainy and windy most of the week. I see my rheumatologist next week, so I guess we’ll see what happens.
Love Mer
Hi Mer :heart: Did the doctor ever bother you about the stiffness question?
By the way: I’m sorry you had a bad week. It is hot here – 90’s F & it doesn’t help my RA, so don’t feel too bad about the weather.
2nd myth is 100% true with me….
i dnt hv too much stifness in the morning but after few minutes without motion,hands bcome stiff….
n in evening too…
whole region around neck…..
thats y i hate ra…
Hi Rachel, one good reason of many to hate RA!
Over the 39 years I’ve had RA, the morning stiffness question has always been there, until my latest rheum. He accepts that I’m at a point where I can be stiff all day long. But I’ve been asked countless times, sometimes docs acted like it was the be all, end all question. Other times it was just a basic part of the exam and did not affect treatment that I know of. It has waxed and waned over the years. It may have just be a habit for many of the docs that asked.
Hand disease became apparent within the first 9 months, as the RA found new homes in my body. It remains one of my worst problems. But I’ve learned how to type even with the ulnar drift, it was slow enough I guess that I accommodated with out be that aware of it. Makes hitting my a,s, q,w,z,x keys trickier. But that’s what spell check is for.
Right now, well the Humira is working I guess, getting out of bed is pretty easy. But as the day goes on something is going stiffen up, the question is what joint or which part of my back or neck. It depends on what type of work I try to do. Mopped my kitchen floor the other day and within a couple hours I really, really wished I’d just left it a spotty mess. It looked rather leopard like! Maybe I could have started a new trend.
But from that chore and doing dishes I locked up in my neck, back, shoulders,s/i joints and hands. Probably a combination of RA stiffness and muscle problems.
Early on the stiffness was classic and relentless, to the point of tears trying to get my body out of bed. Then I would go downstairs on my butt, because I couldn’t stand, where my Mom would maneuver me in and out of a hot bath. She made sure the aspirin and water were close at hand. That usually helped, then it was onto the couch for me and off to work for her. It was the recommendation of an RA doc in 1972.
Maybe I’ve just had this disease for so long that I can’t answer the simple questions you ask, because there are no longer any simple answers. Early and aggressive treatment for me was aspirin in disgusting doses around the clock and then gold shots. It took some time to move onto Naprosyn etc.
Wish I could send you some of our beautiful spring weather. The first actual spring we’ve had in years. It makes me so sad that Mom missed it, she would have loved it so much.
Why do you think they acted that way “the be all & end all question” thing? I try to figure out these crazy questions so I can see whether there is a way to promote change.
I think part of it could be habit and, as you said, older docs. I think that when it hits the hands, and in my case, the small joints in the feet and ankles it’s usually an indication of severe disease in process or to come, but that’s not 100% true. I have what one doc called “rat bites” in my finger bones, which are erosions seen on x-ray. This was about 15 years. He was extremely sympathetic on how difficult the disease would become, as I also have had many RA nodules removed. He was right, those two are a bad combo for predicting progression. He was also astounded that I could still walk barefoot.
Maybe the hand damage is just so easy to see,and doesn’t really require all the range of motion tests, etc.
Wish I could be more helpful. I’ll try to remember to ask my RA doc at Mayo on my next trip down. He’s never dismissed a question or concern.
I totally agree with the morning stiffness theory you have, the ubiquitous question is irritating for me b/c I don’t think it’s that important yet I’m asked it every appt…I think it’s neither here nor there. What’s the scientific definition of “stiffness”, b/c I’m stiff all day. That’s what RA is, swelling/stiffness. Sure it’s really tough in the morning but how do I know when it ends exactly? If my pain lasts all day, at what level of pain does the “morning stiffness” cease to be “morning stiffness”? When I can stand up straight? How bout when I can lift the bottle of water to take my pills?
Michael, Good point. & Thank you for making me laugh. Although you’ve obviously never been pregnant, but you sum it up just like it is “morning sickness”! When is not morning sickness: at one minute past noon? When you can hold down a cracker or a bite of banana?
Hey m new to this site….i have been diagnosed with RA recently…was suffering since a year…tho my RA blood tests are negative…m really taken aback…m young and cant think how m gona survive this..i hope talkin about it to people in this site might get me some relief to the misery and depression m going through…thanks for making this site…
Nissi, I’m glad you found it! It does help to talk with others who understand. A lot of people have negative tests. We need new tests. Did it take you a long time to get diagnosed?
Nissi,
I’m very sorry to hear and I so sadly understand the young aspect. All my tests were positive but they kept getting my hopes up each time, thinking they were false positives at one point and then again because I didn’t show more signs of RA than Fibromyalgia. I am only 23 and have been diagnosed for about 6 months although I’m becoming positive that I’ve had symptoms & didn’t know it for at least 2 years. If you ever need someone to talk to, feel free to find me on Facebook. 🙂 That goes for anyone really- I’d love to have more friends that actually understand what I’m going through.
Carly, I’m sorry to hear about your diagnosis too. Has treatment been working for you?
I believe that RA can be handled as I do, without traditional and harsh medicines. I use a protocol which compliments my only 2 medicine, LDN and 15 mg of hydrocortisone. I will be happy to share the information for those that are interested and would enjoy talking to Kelly. Thanks
finding your ra warrior site has been a god send to me. i am fast coming up to my 60 th birthday and have ra for 30 plus years. i also have been told by a dr i had seen for 2 years and one time on a visit, my hands were great no swelling no red and so he said i did not have ra. i of course did not go back and actually had given up on specialists and just thought this was how my life is. then i found your site and my oldest daughter was just diagnosed with ra. so am now going to go see an ra dr. and try to see if they can help me have somekind of a life. also i stiffen up the the minute i stay still. also so much has changed in the last 30 years. back then you were told that ra didnt effect your spine. course as i have learned they were wrong. my spine has curved out of alignment and is not pleasent, because of the damage done to the facet joints. your site and my daughters diagnosis has given me the courage to once more try to see if there is help(i never responded positively to any medicines and/or i had allergic reaction. i stopped when they wanted me to inject gold. so thank you so much for your site.thank you
Sherrie, what a story you have – you have battled a long time. I hope you and your daughter find a good rheumatologist this time. I don’t know why some of them think that because a person’s hands look ok one day that they don’t have RA, but I’ve met some like that too. Some patients who’ve had RA a long time like you have tell me that treatments do help them, so I hope that it will for you!
My rheumatologist asks me at every single visit, also, about the “morning stiffness,” and I never can say anything except, “not really.” And as I was thinking about that one day, I thought “maybe I just don’t understand the meaning of ‘stiffness'” I know it is not always in the morning, and it not “worse” in the morning. I call it all “pain,” not “stiffness” – when really, maybe it is both. It is not that I literally “can’t” move it or that “it won’t move” – it is that I am choosing to NOT move it, or not move it very much – because it’s painful when I do. Does that make any sense? Maybe I think that when they are asking me if I get morning “stiffness” – I am confusing “can’t” move it with “don’t want to move it,” and therefore, because I usually don’t have a choice (I have to go to work, have to clean, have to do so many things), I end up “moving very slowly” because of the pain, which, I suppose, is the same exact thing people do when their joints are “stiff.” But of course, that has nothing to do with it “always occurring in the morning,” because, of course it doesn’t. It happens all the time, and whenever it feels like it. So I end up somehow feeling like, “if I tell my doctor I’m not stiff, he’s going to think I’m crazy and that I don’t really have RA, because people with RA have morning stiffness.” And because of that, I have literally been a split second away from saying, “yes I have morning stiffness” when I really don’t!! Just so that I don’t be thought “crazy” or denied treatment for RA!! Which is a dumb thought, I know, in light of the fact that my blood tests come back positive for the rheumatoid factor. Also – since I’m in my late 40’s, how do you know what is “stiff and/or painful” due to RA vs. “just getting old?” Maybe I “minimize” my RA symptoms, thinking they’re not related to that, but instead, think it’s just the aches and pains and “stiffness” that comes with age …
I was only “diagnosed” by way of a ‘positive RA’ factor in my blood test a little over a year ago. But now that I look back on things, I think I’ve had certain “signs” of it for several years. For one, almost every time I have gone to my regular doctor for the last 5-7 yrs, the nurse would say, “Did you know you have a low-grade fever? Are you sick?” And no, I wasn’t sick. For many years my head and face would feel “hot” to the touch, where, when someone hugged me (like, every week at church), they would comment on how “hot” my cheeks felt (if our cheeks touched), and ask me if I had a temperature or was sick. And isn’t a “fever” the first sign that your body is “trying to fight an infection?” And would then make the RA diagnosis (or something else?) make sense, for me to be always running a low-grade temp – like I WAS trying to fight off something that wasn’t really there or wasn’t an infection (like RA does – attacking your “normal” body parts as if they were “viruses” and/or “infections” to be fought)??
I was diagnosed with hypo-thryroidism at age 24, also (my mother has both hypo-thyroidism and RA, we have several people on my mom’s side with thyroid problems, and my mother’s grandmother had RA – and both she and my mom had/has the other “classic” symptoms of the “bent fingers” that go towards the outer parts of her hands, and my mom has a bunch of “nodes” on her arms and legs, and is in pain ALL the time, EVERYWHERE but you wouldn’t know it because she tries to stay as active and “normal” as possible and never talks much about her diagnosis or the pain – she wasn’t diagnosed with it until about her mid-50’s, but she never went to the doctor or reported her symptoms until they were out-of-control and her fingers started getting “bent,” either, and she said she knows the symptoms were present for awhile, she just doesn’t remember how long before she decided to “complain” about them to her doctor, and she is now 71 yrs old). But back to my case – about 7 or 8 years ago I suddenly gained 30 lbs. for no reason – and despite the fact that I was nowhere near sedentary (even was walking and/or exercising 3 times a week, at least), and nothing about my diet changed. The only thing I can link it to is that it was around the same time my doctor started telling me it was okay to switch to generic synthroid from the “brand name” that I had been taking for years. And I didn’t connect that to it until about a year or so ago. After doing some reading on the Internet, I discovered that there were others out there who had the very same thing happen to them, when switching from the brand-name Synthroid to generic.
Anyway, at the time of that weight-gain, I also started having extreme fatigue and lower back pain. I always “sort of” had the lower back pain, it just got 100 times worse after the weight gain – I literally can’t walk 25 feet sometimes, or even stand at my kitchen sink and do dishes, without my lower back searing. I had been told in the past by my gyno that my uterus was enlarged to the size of being 4-5 mos pregnant – there was no “problem,” just that my son had been a rather large baby (8-3/4 lbs., which for ME was a large baby), and my uterus probably never shrunk back down after. I was also big-busted. So about 4-5 yrs ago I had my uterus taken out, as well as a breast reduction (2 procedures, 1 day of surgery!) to try and “solve my problem” of lower back pain, because I figured it had to be a muscular problem after having every kind of x-ray, scan, MRI, physical therapy, pain pills, etc… I literally tried every way there is to find out what was causing the pain and relieve it – to no avail.
Then came the “pain” problem in my wrists/elbows. I was diagnosed with carpal tunnel, and had the surgery done on just one side (the one that had the worst, most persistent symptoms). Then, 1-1/2 yrs ago I fell and hyper-extended my arm/elbow on one side, which caused me problems until only recently. I am a typist by profession. So again, I had “something else” that could have been the contributors of my pain.
The last 1-1/2 to 2 yrs has been the worst. The pains were cropping up in different places – like my knees and hips (again, the side in which I had the carpal tunnel surgery – my left side – is where everything seems to hurt MORE, moreso than the right. An MRI on my left knee showed a slight tear in the meniscus – BUT, I had fallen on that knee several months ago, and though it hurt like — when I fell, it was feeling better in a few days, so I didn’t think I did anything serious to it. Now, who knows. But I have no explanation whatsoever for the “weird” pain/strain I feel in my left hip – it happens in the top of my leg, sort of going up into the left lower quadrant (very lower) of my abdomen – not really in my abdomen, just right above where the “bend” of your upper leg is – it’s a pain (almost feels like when you have a pulled muscle) – that is not always there, only when I move in certain ways, and sometimes it happens while I’m walking, and sometimes if I’m just standing – so I can’t really tell if it’s related to “bearing weight on it” or not. Neither my regular doctor nor my RA doctor know what it is, or what could be causing it. So, like the case with my knee (before I had the MRI done), I was given a cortisone injection. Oh, I’ve had one of those in my left wrist, too.
The worst thing that I’ve had for the last 6-8 months, though, is the shoulder pain. And both equally, not more in my left side, as in the other cases. I can barely reach behind my back if I have an itch. I get pain in my upper arm/shoulder (again – I can’t tell exactly where the pain is, or pinpoint it to a small area – sometimes it feels like it’s right in the joint, other times it feels as if it’s in both the joint and the muscles in my upper arms) I cannot put on my tops over my head (or take them off) without excruciating pain. Some days I can’t lift my arms enough to put them up on my steering wheel in my car. Some days I can’t lift a glass of water up. Just to go in an “upward” movement at all hurts, or to go upwards and “push” or sometimes just the motion of “pushing” (like trying to push down on those child-resistant caps of medicine). This shoulder pain has been persistent and on-going, and I’ve had no other reason that could account for it (like all my other ones).
Sorry for this being so long …. Just thought I’d share my dilemma, and if anyone had any comments or suggestions (if you’ve had any of the same) … please share! And thank you, Kelly, for this website and all the time you’ve taken to put information and share your stories with us. It’s greatly appreciated … I look forward to looking at all the articles, to see what I can glean from them. God bless us and help us all in this fight!
Congrats on your blog’s one-year birthday. It’s the one place where I know people will understand my life.
Recently, my friend’s mother died. I sent her my “recipe” for “heart medicine.” Maybe it might help someone else on this blog so here goes:
Heart medicine; gather those who feel as you do, sit at kitchen table, tell stories (one after another) until you have cried, laughed, prayed and feel as if you’ve touched heaven. Hug hard. Repeat as needed.
PS: for this blog, change “hug hard” to “hug soft.”
Denise
I’m glad to know I’m not the only one who has difficulty answering that morning stiffness question, I’m always asked ‘how long are you stiff for in the morning’ and I usually say ‘if I’m stiff when I wake up, sometimes I’m stiff all day’ to which they respond ‘so, longer than one hour then?’ and then ask if a hot shower makes it better (do they really expect me to say that hot water is all I need???)
However, as varying the answers slightly has never made any difference to what happens with my treatment, I’ve given up worrying about it!
I am so thankful to have found this site…and grateful to have run across this article on here. My problems began or so I thought about 5 weeks ago, when I “hurt” my hip swimming. However 2 weeks later my other hip hurt, then my wrist then the other wrist, knees etc. etc. My SED rate was up when I went to doctor for all this and that lead to being tested for Lupus, Lyme, and arthritis panel done.In the meantime my primary care dr put me on prednisone and an anti inflammitory, which gave me relief I hadnt had in weeks. When the tests came back all were neg except the RA factor was high. So now I am suppose to wait till I hurt bad again, since I just came off the predisone, then go back to the dr for some additional test for RA. I am so confused cause all the sites I have been on say a key indicator of RA is morning stiffness and usually doesnt involve hips which is my major pain area…Im so confused by everything I have read on RA. I have alot of the symptoms and a little morning stiffness but not to the degree that the other sites have said..Thanks again, this is truly a blessing to have a lifeline to others experiencing the same problems!
At my last visit to the rheumatologist, I had my fingers checked and was asked about morning stiffness. I said I only had a couple of minutes of morning stiffness, but had a lot of stiffness after sitting in the car or at my computer for an hour or so, particularly in the evening. If I’m in the car for a long time, it’s all I can do to get out, and I have to hold on to the door for a couple of minutes until I can move at all. I then need to use my cane to go into the service station. But by the time I come out, I’m walking much better. I was told that only the morning stiffness was due to RA, and the rest was osteo. But until I got RA about 6 years ago, my osteo never produced such symptoms and I only have it in my neck,and one knee. I also showed her how my toes are deforming, but she said that was due to old age. I’m 68. Go figure.
I was very, very lucky that I had a rheumy that WANTED to treat my RA aggressively, it was ME who wanted to go conservative (I didn’t know much about RA then, only how expensive the meds could be). He eventually won out, the fact which I am VERY grateful.
Sounds like a good doctor who cares about what happens to you. I hope the treatments are effective for you!
I am a “textbook” case of RA – I made my own diagnosis at the onset and the docs and bloodwork concurred and my treatment was prompt. I have the hands as my first sign of “relapse’ and I am stiffer in the AM. that is why when I get an “unusual” symptom, recurrence/flareup or switcheroo on the AM/PM flareups, I am thrown for a loop! I now have a very keyed in sensitivity to when I need to rest, when it it’s the RA as opposed to other issues complicating the picture – a pulled muscle , e.g.). I am now learning to “find” the RA when I am taking effective meds and it is in “remission”. Is my fatigue due to RA or side effects. Is the unusual joint pain the RA or side effects? Right now I have nausea – is it side effect or have I been overdoing it because I feel so great after months of pain? (I am overdoing it! LOL!) but how to manage the symptoms…..so I am learning. Nothing is cut and dry anymore. The simplicity of those early days – the “classic” onset symptoms are now muddled by the wear and tear of the disease and the different treatments I have endured. I hope this has been helpful to those with similar stories working through the “muddle”.
Its great to have a page we can all share. This is not and easy condition to live with. However I like to use more positive terms than a fighting warrior which is exactly what RA is. Think of yourself as a pillar of strength and an inspiration to others just for getting through a very hard day! Believe it or not I teach yoga and Pilates, often in so much pain my classes wouldnt guess I parked in a disability spot just to walk less steps! My RA started after I tore my cartilage in my knee. I had rehab with an idiot physiotherapist who massaged so hard whilst talking on a phone heald between his shoulder and ear, till I heard a pop and he had burst a bakers cysts behind the good knee. Within 4 hrs I was in emergency with a DVT in my leg and put onto warfarin to thin my blood. Talk about a chain of events, I then as a result of the shock developed RA. I may mention I am also a homeopath and I have cured such severe illness eg. Thyroids that were all but burn out ready for surgery, pleuracy and pneumonias all sorts of internal and external conditions, but RA is so tricky infact all autoimmune diseases are. They need maintenance like an old car! sometimes they need oiling other times new parts. I have found most immunosuppressant drugs to be useless on myself. However the double edged sword cortizone is miraculous at times when I can’t even get out of my bed, I do suffer mornings. The thing that I find works the best is a painkiller at time of worse pain so for me AM and a slow release one so it lasts and you don’t need a top up and a blast of cortizone when needed. And as hard as it to move, remember cartilage loves to be heated it feels better and can move. I dont mean hot weather though because mostly people suffere less in the cold. When I get an aspiration and am injected at the same time, my clever dr does it all with one needle and changes the syringe not the needle so less panic!!! When I have it in one joint usually the left knee it seems to relieve my entire body all my joints ,so I don’t need injections everywhere and it last for 3-4 months and the synovial fluid is getting less and less now so I am winning, of course supported by homeopathy. In all, each case has to find its own recipe and relief and that’s worth going dr to dr. Liza
I have morning and night pain and stiffness.
Not sure why.
I am a 59 year old male.
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Coming up on my 28th rheuma-versary. It’s a tough road. My morning stiffness was a huge problem when I was first diagnosed, but now, it rarely bothers me. Methotrexate controls my RA quite well, as far as my joints go. What bothers me most now is the constant fatigue.
The best thing I have found for my over-all health and RA management is swimming in a heated therapy pool. I thank the rheumatologist who recommended me for physical therapy in a pool.