What is a Rheumatoid Arthritis Flare?
Rheumatoid Arthritis flare symptoms don’t play by the rules
As I’ve mentioned before on the blog, my joints did not read any rheumatoid arthritis books before I got RA. I had no idea which joints were supposed to be my rheumatoid arthritis joints and which were supposed to be my “healthy” joints. I didn’t study for my blood tests either. No, the rheumatoid arthritis had a mind of its own and it did not always obey those moldy ol’ American College of Rheumatology Rheumatoid Arthritis guidelines. What are the rules for rheumatoid arthritis flare?
Like most of you, I faced each new symptom with surprise and dismay. Yes, Rheumatoid Arthritis symptoms may sound peculiar to my neighbor, an RA Atheist, but they seemed even weirder to me in the middle of the night. She may excuse me as a hypochondriac, but what do I do? How can I excuse my own rheumatoid arthritis symptoms as hypochondriacal? “Get out of here, you Phony! You are not real.” I wish.
Again, like most of you, I went to the doctor. I don’t mean my rheumatologist – I mean Dr. Google. I found journal articles, abstracts, blogs, and forums. But, I was puzzled there, too. Everywhere, I read the word “flare.”
So, what’s a Rheumatoid Arthritis flare anyway?
I was so puzzled. What on earth does word flare mean? I kept reading.
Eventually, I began to get the idea that rheumatoid arthritis symptoms for some patients wax and wane. The way they tell it, it seems that for some people, RA symptoms are episodic or interrupted by periods of near relief. I felt like a non-RA’er on the outside looking in, trying to figure out what’s going on. What is a rheumatoid arthritis flare anyway?
Now, I was really in trouble. Was I going to get an “F” at Google University, too? Was it another conflict between the reality of my Rheumatoid Arthritis symptoms and what they are supposed to be?
When I hear a doctor talk about RA flare, it sounds like life is pretty good between the flares. According to About.com, a flare is an increase in symptoms from the usual. That might mean joint pain, joint stiffness, swelling, or fatigue. But, who or what defines the baseline for symptoms? I’m still confused. My RA is always the same: 24/7. Ten feet deep. Wall to wall.
What is your experience?
Do you think “flare” is a clear term? Does your doctor use the word “flare”? Does she seem to think your RA is “better” than you think it is between complaints? Does your rheumatoid arthritis flare even though you are on DMARDs? How much time is there between “flares”? What is your baseline (between flares) like?
Recommended reading:
- So Glad Your Rheumatoid Arthritis Is Cured
- The Use It or Lose It Approach to Rheumatoid Arthritis
- Baloney About Rheumatoid Arthritis
Before I was diagnosed I had what I now know are flares. I’d go from being able to walk one day to being unable to even get out of bed without crying in pain the next. A few days later I’d be fine (which lead me to thinking that people thought I was faking what ever was going on with me ~ I had no idea at the time what was really going on).
Unfortunately the disease has progressed despite the DMARDs ~ despite my hearing loss from sulfaslazine ~ despite my use of many products that people said would help.
While I haven’t had a “flare” that’s left me unable to get out of bed in a long time, I live in constant pain. So it’s kind of like an ongoing flare. Unfortunately if I am going to go on the biologic drugs, I have to be treated for latent TB first. More drugs ~ more damage to my liver. Okay, I’ve gone on too long ~ just feeling a little sorry for myself tonight. Thanks again Kelly for all of this.
Hugssssssssss
Kathy 🙂 (aka MomB)
I did see a rheumatologist who had pretty severe RA, but she had absolutely no sympathy/empathy. She sent me away in tears, clearly surprised that I was devastated to get a diagnosis of never having had RA. I don’t have any deformities yet (she did, hands, back, etc), and I felt as if she was judging me, like, “you don’t even know what pain is” or something like that. I wish I had not been in such a deep depression at that time, because I would have pushed her, talked about remission, asked questions, etc. But at that point in my life, I felt completely defeated by RA, only to be told, basically, that it was all in my head.
As far as flares are concerned for me, I have pain and fatigue every day, but not excruciating, debilitating pain. I can manage to do things like get my own drinks, shower, change clothes, and do my “job” (it’s volunteer work on the internet), but it is not “cute” in any sense of the word; it’s still a struggle.
The days when I am flaring, though, it’s really bad. The pain mostly affects my back, shoulders and hips, and it’s mostly a throbbing/spasming pain, but with sharp pains stabbing other joints intermittently, randomly (OUCH, MY WRIST!). It’s also accompanied by flu-like symptoms and severe fatigue. On those days, I manage to get myself some water when I go to the bathroom after I get up (I keep a water glass on the stand next to my bed for days like this), and then I go directly to my chair and try to stretch some of the stiffness away (yeahh, whatever), find something distracting to watch on the internet, and hope my husband gets home early, so he can help me open all my pill bottles, fetch drinks/food, etc. On those days I do not eat until he gets home because I can’t even imagine making it to the kitchen. Sometimes I remember to leave snacks on my desk so I don’t have to wait until 5:30 to eat, but I don’t always remember that at this point, because this is all new to me again (fresh out of remission). I guess I am still stubbornly on the denial train, but I need to get off that soon and make my paths/areas RA ready.
Most of the time, they seem random, and I wake up with them. Other times, they’re random, but come on in the evening, sort of like a flu acts, getting worse as the night goes on. Other times, I can tell exactly what causes them, such as a trip to the grocery store (or any concrete walking at all), or some kind of trauma (broken toe, surgery, etc).
I have to be careful not to cause them myself. I have to remind myself what will happen if I feel like I can go outside the house and do something that, for most people, would be a leisurely activity, such as a concert in the park or even eating at my favorite restaurant, which has a long wait. As I said, this is not “cute.” 🙂
Kelly, thank you for your website! I, too have read and researched for anything I could get my eyes on in regard to RA and other related auto-immune disorders and typically, it is all science based information and just the facts and not how it affects the whole person, the emotional and mental side of living with a chronic illness, so thank you!! I find that when I meet someone with RA I get a little obsessive to discuss what their experience and treatments are. It is comforting to have someone that you can relate to and that understands the battle with the pain, fatigue, essentially the loss of your previous way of life. In fact, I cannot do a lot of things that I once did before diagnosis. I, too, have major problems with “overdoing” it and not being able to move or function like a human being for days. I am grateful that you have an outlook that is humorous, I often try to alleviate the depression and stress with humor. Sorry this is so lengthy, but I am overjoyed to have found this blog! Dawn Gilmartin
I’m so glad you did too, Dawn. I feel the same way – I love to hear all about someone’s story when I meet another person with RA.
See, I guess I was in such a fog that I neglected to even discuss the “flares” topic!!! I don’t like the term quite frankly since my pain, fatigue and other problems are typically 24/7 365 as well. However, there are days which are more intense or there is swelling present where I don’t have swelling on a daily basis, but the pain is ever-present, the fatigue is always severe, so I usually don’t describe the more intense days as “flares”. I can predict changes in the weather a couple of days in advance and have been really trying to find out the science on that lately with barometric pressure and pressure in the joints.
There are never times of remission for me, I guess is what I’m trying to express and that is why I feel that for my case the term flare doesn’t really accurately describe reality.
I agree with you again; that term does not fit my RA. When I first read that word “flares,” I was confused. Then, I think I was mad: How come my RA has not been like that? Then I realized that for many years it had been like that, flaring & remitting, before diagnosis. It’s just been the last 5 yrs that I have no break at all, every joint tender at all times & some of them stabbing. And any joint that’s used “screams.”
I’m glad you stood up & said you don’t like the term. We are the ones who live with it & we should not be forced into a mold that does not describe what we live with.
Ok, I think my RA may have read the books even though it’s seronegative – taking me down a longer road to diagnosis. I came here looking for other peoples’ stories of flares because my Dr. wants me to call if I flare – is trying to get me to what he calls baseline. I am still trying to understand what that can be. His goal is remission – or as close to that as we can get.
When this started, I would have periods of screaming pain, stiffness, swelling, that lasted months then decreased and just as suddenly were gone. On two occasions, completely, no symptoms. The first symptom free period followed the first onset of symptoms. I was naive enough to believe that it might be a virus of some kind – I thought I was better! It only last about three weeks – oh, but what a lovely three weeks! The other times, the pain and stiffness would decrease – swelling would be gone. But I would never be pain free. And the fatigue never goes away.
With medication, I now have less pain, stiffness, fatigue, but then had another flare – this one took me 25 days to get back to where I felt as good as I felt before it started. Not 100% but not too bad – not my old self, maybe never my old self, but I could deal with this I suppose.
What I find so frustrating is how any kind of physical activity wears me out and causes pain and swelling – theses joints hate me!
That does sound like flares, Leslie. Good description for others reading, thanks.
It’s so true what you said about how any physical activity can bring them on if the disease is active (as evidenced by fever, fatigue or pain..)
Funny you should mention flares….I was told I was near remission a few months ago for the first time in 3 years. I just missed work for the first time in 6 months. That is very encouraging!!
I adore my PCP, she has actually talked to my rheumy about my workload at my job, and she knows I am doing everything I can to keep working….even when others just think it is ‘only RA.’ I am fortunate that I have known most of my doctors for years, so they know me and where my baseline was.
For me a flare is increased pain that is out of the ordinary with no explanation. Most of my increase in joint pain is due to barometric changes within 2 days, or overdoing it when I know I have pain or swelling. Muscles aches and generalized achy pain is usually vitamin D level is low. But today, I just don’t feel “right”, and don’t know how to explain it. Just exhausted, puffy, achy, and feel like my body weighs ten tons. But again, my doctor is so good to listen…she is checking TSH and B12. I didn’t think about thyroid, but it is a good possibility. I’ll find out in a couple days.
I met my rheumy 3 years ago. And she has had to get to know me quick. Must be difficult to try to treat a patient aggressively with subjective data when labs are always normal. What if you give a patient medications that they don’t need? That is some scary stuff…
I have to make quick decisions about patients on occasion as to whether they are taking advantage of me or being honest. One thing about RA is that it doesn’t go away. You are either seeing the PCP or a rheumy.
Have patience with your healthcare professionals and try your best to explain what you are feeling or trying to say. They are trying to treat us the best they can with a condition that is totally not predictable.
Something I found interesting was that my RA doc, who has been very aggressive in my drug therapy and very informative when I was first diagnosed, looked at me like I had three eyes when I mentioned the word “flare.” It was as though he had never heard the word before, and I remember him asking me what I meant by the term. It may be that he called it something else.
What I do know is that the flares appear like a thunderstorm in the South: out of the blue and in varying intensity. Sometimes they rumble past quickly, and other times, the flares make me wish I could climb out of my body for a while.
This is very interesting Jeanette. I’ve never heard a rheum doc use the word and it’s not a word used a lot in literature – I had never heard the word either until I read what patients were saying online. When you look at the most common patterns of disease activity (probably the word used more often by doctors), some patients have unrelenting disease activity and many others have an up and down pattern (commonly referred to as flares).
I am soooooo proud of you kelly!!!! I just listened to your interview on kiss fm. Your voice is getting louder girlfriend – and I’ll keep adding to it by telling people to get informed through your blog. Gentle Hugs!
Well, I have been looking for answers too!! You always seem to be on the same track I’m on. Wanting answers to things that just don’t seem right! My RA is supposingly in remission. What is that? I still have joint pain in my fingers and they swell!! My ankles hurt so bad at night. I was told it’s the way my feet sit when standing. Huh? I was about to give up, until I found you RAwarrior. You have been a life savor of sanity…. I thank you so much from the bottom of my heart to the top!!! 🙂
You always say it as it is! People don’t understand those of us who have RA. For that matter, I don’t understand it, either. Thanks for always being “right on”.
I do have flares..and they usually hit first with a low grade fever..that’s when my joints would hurt the most..especially ankles, toes, feet, knees, shoulder….everytime I run a low grade fever my symptoms become worse..
I have had long periods of remission and then flares that would last a week or several weeks; the currebt one has been going on for the 6th week with most of the swelling and pain in my hnds and shoulder.
Interesting that you mention excruciating pain episodes in the middle of the night, waking up with changes in your feet…for me, it is the hands. I go to bed feeling fine and wake up to daggers stabbing the joints of my hands. Lately, my eyes are a problem, I feel as though the lids are glued to my eyeball, and it burns when I open them..as though they are dry. I use a lubricating drop that helps, but at times it takes several tries to get relief, but they continue to burn and blur afterwards.My current rheumy does not seem to believe in periods of remission; I cannot find another, as this is the one my medical care provides at the moment. Have you ever heard of the eyess being bothered this way?
What you’re describing with the eyes sounds very familiar. Look at this page about Sjogren’s syndrome. Sencondary Sjogren’s with RA is common. The blurring can be due to the dryness of the cornea. I’ve had the same. Just to be sure, have you seen an eye doctor? Some of them know more about the eye problems that can be caused by RA.
As a matter of fact, looking back in my medical resords, I see that the GP I had in ’96 suspected sjogren’s, but said nothing to me. I have asked two rheumys about the possibility over the past four years, and have not been answered. I am going to take it up again with the opthalmologist next week. I also think that is what it is, and over the counter eye drops are no longer a help.
Thanks again for this site Kelly, and I hope your shoulder is feeling better soon.
None of my rheum docs would discuss Sjogren’s with me either. I was told to ask my endocrinologist! When I finally saw a good opthalm., he recommended taking Omega-3 (and gave prescriptions also). It did help me get past the blurriness. We do have to be careful with it since it can be potent (some recommned up to 10 capsules per day & he only recommended 2), but you could look into it. I also like the thicker nighttime eye ointments – otc.
Thanks Marilyn, my shoulder has been a bit better the last 2-3 days – I think it passed the buck to my hip. But I’m more comfortable. 🙂
I think my RA has flares that wax and wane. I know that there isn’t a time when I’m completely symptom free. But there are days when I don’t feel I can move or get around to do the necessary things; preparing myself somehting to eat, washing clothes, getting groceries. I am always in some kind of pain. My hands freeze up. My feet are achy. Legs, knees, back, you name it. I think the pain and stiffness travel throughout my body; one day hands, one day wrists, one day fingers, another time knees. I don’t know what normal RA is because I have Fibromyalgia also. I’m just a mess.
Kelly, Listened to your interview on KISS. Excellent. Plus I read your article Everyday Health blog!! You are achieving your goals of spreading the word. Very nice job.
Congrats Kelly
Steph Munson
Dianne, I also have FM, but those pains have been overcome by the RA it seems.I don’t know which causes the fatigue after any activity, even walking for a while outdoors puts me down, and getting through meal preparation is very difficult. The hardest thing for me right now is watching my beloved garden turn into a weed patch.
My RA never ‘flared’ while I was on Humira—since I have been off everything except Tylenol and Lyrica (for FM), the joints in my hands,all of them, have been red, swollen,and stiff. A couple on each hand lock up and are painful to open, especially in the mornings. This started in February of this year, and has been constant—sometimes less painful, sometimes more, but constant. The swelling involves the entire hand, and I cannot wear my rings at times. I am still doing Yoga (once-a-week classes) and am in physical therapy twice a week to improve balance and core strength. Really strange to have to learn how to walk again—I never thoughtI had a problem there…but I do have to learn to slow down with everything I do apparently, in order to improve balance. It seems to work. However, the joint pain is still there, no matter what else we manage to correct….
I do have what they call “flares.” I have long periods where I have no ra symptoms at all but then a year later bam I wake up and my whole body hurts, I’m exhausted and I can hardly get out of bed 🙁 it can last a month or a year, but at least I don’t have constant symptoms.
I often too think of ‘Flares’? What gives? If we are all taking medication to stop symptoms of RA but we are still having bad repeats of pain; Why are we taking anything at all on a regular basis?
Flares that come and go but we remain on constant medication irregardless confuses me a bit. Could we perhaps treat the ‘flares’ with minimal medications?
As the progression of RA continues it will always be more painful but the medicine we are taking constantly is suppose to be preventative measures to decrease the effects but still RA it still progresses and never gets cured. Is there times I could say dang I feel good and don’t need to swallow or needle myself with these medications today? Some of these medications could be doing more long term damage worse than having RA itself.
For Shannon and Jonathan concerning the ‘long bone’ pain you both mentioned—I had it too, and my rheumy checked vitamin D3 levels and found they were practically negative…after a couple of injections of Vit D, I am now taking 2000 mg/day and the pain disappearted almost immediately.
I have RA, and I’ve noticed that the more active I am or just after an illness ie: sinus infection, my RA is much worse. So I guess you could consider this a “flare”. My RA sometimes go in “remission” usually during early Spring or early Fall, but it doesn’t last long.
Oh sure, my symptoms “flare”.
In the out-of-the-frying-pan-and-into-the-fire sort of way.
There’s the baseline one knee not working and don’t try to be “a man” and open jars if you want to use your hands for the next month, and general lack of energy, strength etc.
And then some days [insert random joint/s] decides to not want to play any more.
But for me anyway, there’s no such thing as remission or a lack of symptoms – just a different type of “normal”
I haven’t been diagnosed with ra yet,but I get theese episodes that come every 8-10 days i feel like I have the flu my hands,elbows,fingers,toes,wrists,shoulders get very stiff,are warm,hurt like a broken bone,swollen.My throat hurts when I swallow and ist not red or sore.Are theese episodes consider a flare? It lasts 3-4 days.
Seems like I’m always in a flare. Whatever that really means. I constantly ache, tired. Some days are for sure better then others. But between my hands, knees, feet (OMG MY FEET AND ANKLES) even my neck. I’m going with the pain in my lower back and hips are to do with old age ;).
I have been told, oh it can’t be that bad. You still manage to…fill in the blank. I’m a single mom. There are things I have to do. Period. And I will do them until there is no way I can’t. I’m unemployed, working on doing my life work. I’m lucky, in that I am able to work when I can. It still take’s a lot of energy out of me. And I end up in bed for a day or so.
Anyways. Constant flare? Possible. I can’t imagine having this every day for 6 years. Peace and blessings.
Jacque B
HI Jacque, I suppose the six yrs for me have just passed whether I thought I could take it or not & you somehow just survive and conquer whatever it is as much as possible just like you as a single mom have done. I only figured out about the idea of flares by listening to hundreds and hundreds of patients. It seems most assume the symptoms are periodic and you hear people say that they had a flare that lasted days or weeks. But for others it stays the same. LIke you said, I don’t think most realize how bad it is “oh it can’t be that bad” because we manage to force ourselves out of bed.
Before My Rheumatologist actualy acknoleged I had any thing wrong with me as Im (picture the scene)entering his office on cruches because Im so swollen and sore I can hardly walk, he begins to interigate me about my symtoms without looking at me (he was writting notes about another patient) and tells me Im suffering from depression. next visit I have Fybromialgia, one year later and many visits to my GP something turns up in my blood, Hospital admission is next and hey presto Iv got Rheumatoid Arthritis and Im having multipil flare ups 2 years before Im taken seriously Iv since found that even taking medication does not stop the flare ups It just helps them from happening so often and it takes some time to find the medication that suits you as an individual,well at least I know that Im not depressed.
Hi,I know what you mean, it is confusing. My first “flare” lasted for over a year, it started in my ankles and spread to all my joints and got progressively worse. I had a really good Doctor who referred me to a really good Rheumatologist. My GP thought I had Lupus, but wasn’t positive. My Rheumatologist diagnosed me with RA immediately even though my blood work was ‘negative’ and my hands weren’t initially symptomatic. After reading your posts briefly I feel so very lucky to have had such a great doctor. He explained that RA doesn’t always show up in the blood work and you have to pay attention to the symptoms. I’m on Remicade right now and it is working pretty well. Still my symptoms vary greatly from day to day or week to week. If I do too much in a day I will suffer that evening or the next day. Or for no reason at all I will have a hard day or the medication will start wearing off earlier than before. I think of those days as flares. For me one of the trickiest things about RA is that it is so random. Don’t get me wrong I’m grateful for my good days, but since they aren’t consistent it is hard to plan ahead or sometimes I have to cancel at the last minute because I am too sick. Any way I hope that makes sense. Thank you for sharing your story and for this fantastic web site.
Up front, I haen’t read all 128 responses here. Just wanted to add my experience, though I haven’t had a formal diagnosis yet. For me, I started getting really bad pains in my wrists and hands doing certain tasks or motions, sometimes soreness and achiness or else sudden shooting debilitating pains, or both. I also started feeling what I can only describe as tennis elbow or sometimes feeling like someone’s thumb has been jammed into the pressure point in my elbow all day long. I attributed this to my taking on a second job, because at age 35 I can’t possibly have osteoarthritis, right (wrong)? Anyway, initially it would be quick, just the shooting pains. Then it would be for an hour or two, then be back to normal. A month or so later I would have an entirely “bad day”, then several days of almost no pain (except periodic shooting pains doing certain motions in my jobs). Over the winter it tended to be a “bad few days,” alternating with a normal week or so. Late winter it became a bad week or so, where I had the symptoms constantly (constant dull aches throughout every arm joint and my knees and sometimes lower spine; frequent shooting/debilitating pains doing certain motions; low-grade body aches and that feverish hit-by-a-truck feeling; fatigue, sometimes very deep), and occasionally much worse, but “always-on”, and then a couple days of normal with very little discomfort. In the past couple weeks or month I occasionally have a “good day” with basically no pain and feel fairly strong. So, a “bad day” or what now is a “bad few days” or week, I consider a “flare-up”, though the time between flares is quickly getting shorter.
Seems like every day, however, regardless of “flare-up”, it hurts to stand on my feet barefoot on hard floor (wood, linoleum, etc.). It feels like I’m walking on river stones, or a rocky shoreline, and the rocks are pressing up into the bones of my feet and I just can’t do it without socks and slippers, no matter if I’ve worked that day or not.
I just made a spreadsheet and have begun tracking these things, which includes joints affected, pain 1-10, types of pain, fatigue 1-10, feverish feeling, temperature, what I did that day (work, etc), how many mg of ibuprofen I took (0mg-2400mg). I think this will help me. Does anybody else track their pain or involved joints, etc?
Hi Tom – sorry to hear about your symptoms 🙁 I hope you’re able to get a proper diagnosis soon, as well as proper treatment to alleviate your pain. Tracking symptoms is an excellent idea, and I know there are other patients here who do. Until recent months, I’ve been fairly stable so long as I’m on my medications, so I haven’t felt any real need to track symptoms. I recently decided to start tracking my lab results, though, and have thought about starting to chart symptoms, as well, as I’ve been in a bit of a flare. I haven’t decided how I want to do it yet, though (I hate the 1-10 pain scale), so I’ve been a bit apathetic!
On the other hand, I have been keeping an updated chart of my sed rate (measure of inflammation), and tracking how that correlates with my symptoms: http://waters-edge.blogspot.com/2012/04/sed-rate-saga-headed-in-right-direction.html It’s a start, anyways! Good luck on your journey, and please share how the tracking works for you — I know a lot of us would love to hear what works and what doesn’t for identifying trends over time.
Tom, I also thought of starting a spreadsheet to track symptoms and pains. However, mine has been very erratic from the start and still jumps around all day long, so in the end I’d probably spend the whole day logging data:). If it ever “settles” I’m definitely going to start a spreadsheet, I think it would be incredibly useful to see a developing trend and to have historical data to refer back to.
At the moment I am plotting all my blood test results on a spreadsheet with some graphs and conditional formatting to show which ones are out of the “normal” range (it helps quite a lot).
Tom I don’t have a formal diagnosis yet, but am suspecting RA. I brought up my hip pain at my last doctor’s appt and they said “It could be bursitis or it could be RA, but I just want to watch it for a while”…REALLY?! I am trying to keep track of my pain and where all the pain is an how bad it is so when I go in there I dont’ forget something. Since that doctors appt. I had a time where my shoulders felt on fire and then I lost all strength in the right arm for a couple days. I have pain in my heels in the morning when I get up as well as my back. My hands have frozen while typing at work. I even had a lady here at work who is a volunteer EMT tell me my fingers look swollen and feel warm and that my right pinky finger looks slightly deformed.I have pain in my toes from time to time. I have very poor sleep because my shoulders ache at night no matter which way I lay. I used to be able to run 3 miles at a time, but now can only walk on my treadmill at a slow pace because of the hip pain. I too have heard that I need to lose weight. I am hesitant about going to the doctor though as I know of nobody in my family with RA – however I have several family members that have other AI diseases. My mom is pressuring me though (she hates seeing me struggle)so I know I’ll evenutally go in. I’m just being a procrasinator.
Thank you all for your responses. Danielle, keep pressing until you get an answer. Right now I take prescription ibuprofen for the pain, which seems to start working around 1200mg or above, up to 2400mg. I have no idea why I can’t just buy IB off the shelf and take five or six, because that’s much cheaper, but it works most of the time. I only take IB if I have to work a job, otherwise I endure it (badly). Mu joints never swell, ever. Never in my life. I also don’t show bruises. If I bruise, I get the tenderness on the injury location, but 99.9% of the time there is no blueness whatsoever. I hope you get answers soon. In the mean time, dont let what people say bother you, cuz they dont get it. Keep at it.
Diane, my spreadsheet I sit down at once a day, and make myself take an average, for pain, joints in volved, temp, faitgue, meds, etc., and I have a cell I put notes in. Like today, I put in that I had excruciating arm pain (8/10, right arm, shoulder through fingertips, every joint; left arm did the same thing Tuesday) as a result of and during particular labor at work that made heavy use of that arm, so I know it wasn’t the arm all day, and that it got better after 1200mg IB. i think it’ll help me in the long run.
Dana, you and Diane are tracking your lab results, which is great. I had blood work in November by my GP, which made him refer me to a rheumy, who said is had a positve RH factor, but I dont know what else and don’t have a copy. I had second blood work at that appt, which was March, and will find out any info in May. I think I’ll request copies of blood labs at that point and going forward. All three people who replied have names beginning with D. Weird.
Kelly, not trying to hijack this comments section, sorry to make a whole big conversation. If there is abetter place for t, like a forum, please redirect me! I am grateful for your work, labor, website here, and thankful for your testimony. I know the Lord will get us through this (expecting a baby boy in end of Aug); all I have to do is walk the path he sets before me day by day.
No – no problem at all. This is great.
we are building an awesome forum to open soon at rheum4us.org and lots of our readers use our Facebook that way but the posts disappear in a few hours. The forum will be private, searchable, and secure. And we’ll own the content. win-win.
Good luck with the baby!! Yes, so right.
Thank you so much. I very much look forward to the rheum4us.org site opening and being part of that. And I did go back and read all the prior comments.
I think my “flares” are not just based on the physical changes happening but because I too would like to be in denial of all this disease. I call it a real flare worthy of more steroids when my patients wear out and I cannot deal with life anylonger, no amount of sleep (if I can) or isolation to silence releaves my psyche. So in summation flare= physical and mental changes together.
Hi all…I am sorry that we are all here posting anything, really. Is sad that we are going through this at all, but a good thing for me is that it has made me a different person-able to see people and things that happen from a different perspective for sure. I believe that at first it seemed that EVERYTHING was a flare! But as years go by, and pain “settles” in, I notice flares. When I have a cold, do too much, stress, or sometimes for no reason…everything gets worse, or a certain area-like hips, feet, costochondritis and throw in a few secondary illnesses…then seem to get back to ‘normal’. (which is still painful, but not flared..) Does this make sense to anyone? So…my levels are pain to flare to pain… nothing really in between. I think the term ‘flare’ is completely defined by the user.
I have begun to recognize that a flare is coming when I become constipated. I know that sounds strange but inflammation happens everywhere..lol. Just had a flare start (2 days constipated lol) and doing my “keep moving through it with NSAIDS and no other meds” and stood up yesterday, heard a loud POP in left knee and now gimping around with most likely a lateral meniscus tear. Okay so moral of this story is…when you feel the signs REST. I tell everyone this as a nurse but don’t do it myself. Always too much to do!!
My flares seem to be a bit different than what I have been reading. My RA is well controlled with meds (MTX, Simponi, NSAID) and I live a normal life, including doing yoga 4 times a week. I have about 5 mins of minor hand stiffness in the morning but not much else in the way of joint pain. My dr did catch it early and started me on aggressive meds right away, which may have made the difference.
Anyway, my flare consists of mostly of fatigue. I start to notice it because I lose my sense of humor. It sounds odd but my mood starts changing. Then I feel it as fatigue and no ability to motivate and do anything. I could cry at the drop of a hat. My eyesight gets slightly worse too. It lasts a couple of days. Then doesn’t return for a few months. I have no idea what brings it on. I didn’t recognize it as part of my RA until recently either.
I think you’ve hit on yet another frustrating aspect of this stupid disease….it’s consistent inconsistency. I spent several years being misdiagnosed with a variety of ailments to explain my bizarre “traveling” and periodic symptoms: carpel tunnel syndrome, chronic fatigue, rotator cuff tears, osteoarthritis, etc., etc., etc. Now I’ve been plunked into the medical gumbo that is RA, and have substituted a daily handful of ibuprofen (which didn’t work), with methotrexate, Plaquanil, Celebrex, and a variety of supplements and vitamins my doctor likes.
Here’s the kicker: I feel better. When I am consistent with my diet (sugar and I are no longer friends), and my pill regimen, i….feel….better. The first pain free day I had was a source of celebration for my husband and me. And a surprise.
I think the subtle symptoms are still the hardest for me. When my wrist is so painful I can’t turn the key to start my car, I notice. When my shoulder is so inflamed I can’t reach the faucet or brush my teeth, I notice. BUT, when I’m cooking dinner and am so tired I can hardly think what the next ingredient is, I think “What’s the MATTER with me!?”. And then…”oh, yeah.”
The conversations with my husband about my symptoms have caused their own “flare ups” at times, because I look “fine” to him. When I told him that if I were bleeding from every spot that hurt on my body, he started listening. Education for both of us has been the key…for me so I can recognize my symptoms better and give my body the break it needs, and for him so that when I say “I hurt”… He gets it.
I have flares. I was diagnosed last April during a flare, but then by the time I saw a specialist, I was no longer flaring, and was undiagnosed. I was told what I had was tendonitis. What? No swelling, so no disease. OK. I went back to my GP and asked her to run more blood tests, she did it, even though she didn’t want to, she agreed with the specialist. She never called me with the blood work results, and I didn’t ask her. I had challenged her and it was awkward and uncomfortable. But, everything was great, no real pain, absolutely no swelling for 4 months. Thank God, I don’t have this horrible disease. Maybe the doctors were right? Then December, great pain, great swelling, all my finger joints. Hmmmm, what is this? I was so embarrassed about confronting my regular GP that I didn’t go back and show her. Nope, I took pictures instead. Then everything went away 6 weeks later, about end of January. Then the other day, literally, I woke up with the palms of my hands and the soles of my feet all swollen and painful. I took more pictures. I’ll go back to the doctor’s office with my pictures in hand. So, I have flares, but so far, each of them have been different. Thankfully I have the Warrior facebook page to ask others about all these seemingly different and somewhat unrelated symptoms. No, I am not crazy, yes, I have RA, and I have the pictures to prove it. Thanks for that. Thanks for everything.
“According to About.com, a flare is an increase in symptoms from the usual”
I think this is a good definition. We all have different “Usual” pain levels. I know for me that my ‘normal’ is not pain free, but the flare ups are much much much worse than my base level pain.
That is how I think of my pain…the is my base level pain and then there is the flare up pain. So yes, I have flare ups but that does NOT mean that between the flares I am not in pain…I know very few RA patients that have a base level of zero…let’s be real! 😉
There you have it, Maddie’s 2 cent’s worth!
I never knew what a flare was until I had one. For years I was in constant pain and thought I must be in a constant flare. No. When my flare hit it was so outside the level of what I thought was awful. I honestly thought about my own impending death, as I thought it might be coming. After about four months the symtoms started to ease back down to their previous dreadful level. However, I am grateful for my four month flare. Now I know what the others are talking about and I am grateful that I don’t live there all the time. What I have now is quite enough thank you. Thank you for your website. It gives me comfort knowing that there are others who know, who I don’t have to explain myself to. It’s a community, a fellowship of people from whom to gather strength. Thank you for what you have done to promote information about RA to the community at large and most of all to us.
I Was diagnosed with Sero-neg RA 2 years ago when i was 27. My symptoms come and go. I can go months feeling “normal” then one day i’m just in agony, The Pain and stiffness can last days, a few hours or a few months. Then As quick as it comes it goes. I don’t know if that’s “normal” or not, but thats how my RA is.
Flares for me mean worse than normal. Normal meaning swollen joints and pain that with pain meds are tolerable. A flare to means I am in bed or my pain is not controllable and requires me to go to the doctor or ER.
I haven’t had time between flares where things are great. I am almost in a constant flare with “good” times where things get a bit better but never are awesome… Trying to explain that to people is so difficult and I often find it best to put on a happy face and just plug along.
My baseline would be between a 5-6. I do get flares that will range from a 8-10. They usually last a few days to a few months. Usually if it lasts more then 6 weeks I do a prednisone pack and that usually helps.
We’re working on adjusting meds again as it seems that my baseline is going up. My symptoms don’t always seem to match what the doctors say they should be. I look at like everyone is very different so my symptoms won’t match other people’s.
I had a momentary remission about 6 months after beginning treatment and then it seemed everything stopped working. I have been on a medication carousel since then (going on 2 1/2 years now). My RA doctor gave me the impression that the “remission” is normal once we get the medication correct. I no longer believe him and often wonder if I’ll ever feel good again or if I should just stop treatment. Apparently my disease hasn’t read the instruction book either!
Like so many of you, my “flares” are more pain than normal. They seem to be caused by over doing it or getting stressed. I can relate to the brain fog as well – “what am I doing putting the kids lunch in the fridge to heat up?” (I work in childcare) When I’m worse that normal I describe it as someone having a voodoo doll of me and sticking pins in it. That stabbing pain is just how it feels. My opinion of this disease is that it’s like a little kid – it gets bored easily and that’s why our symptoms keep changing!
I’m so grateful for this site, it keeps me sane!
My baseline is an overall pain level of about 5 and it takes only 1-2 hours to “loosen up” after inactivity. Just recently started new medication so hopefully my baseline will improve!
For me a ‘flare’ is a return to the extreme pain,difficulty moving, burning sensation on nodules that was my lot before diagnosis and before finding a fabulous rheumatologist who believes in treating this disease aggressively from the outset. In between these flares I am able to work full time to a large degree pain free, not even (at the moment) stiffness in the morning. Humira in combination with methotrexate worked a treat for a long time but then gradually became ineffective. My rheumy changed me to something else (I have forgotten the name) and I found myself in a massive flare. She gave me prednisone to help get it under control and switched me to Orencia. Fabulous results. Of course I still have the nodules, and the ones on my feet cause much pain when I have to walk a lot. From reading your column I have realised how fortunate I am to have these long periods of remission from the dreadful pain and other effects of this disease. I have a cousin with RA and he has decided not to go down the same treatment road that I have and just accept the outcome. He hasn’t worked for years. He must tolerate pain better than I can.
Talking about flares is right up there with a discussion about morning stiffness. 24/7, wall to wall. According to comments people make to me, I should be “stiff” for a bit in the AM and then flare when the weather changes. Yikes, if only that were the case.
if only.
I have been lurking for a couple of weeks – what an amazing place. I guess I am in my first “flare” – now managed with prednisone until I see the rheumatologist for the first time at the beginning of May ( a minor miracle to get in so quickly in Canada – it is usually about 4 months here for “urgent”). Fortunately my GP put all my symptoms together and he is pretty sure it is RA, I am blessed that he believed me and made the referral immediately. I haven’t ever been in so much pain, in so many areas of my body. Wow – it is really kind of terrifying to think of a lifetime of this, and the fatigue – I have 4 kids and thought I knew tired. I was completely clueless. Anyway I did one burst of prednisone, but now he is keeping me on 20mg until I see the rheumatologist.Anyway, I am so grateful to have found such a welath of info and smart, strong and courageous people to help me find my way through this. Thank you all
Welcome, Jacquelin.
I was diagnosed about a year ago with RA. The onset was nothing short of horrific- started with a swollen knee, then burning pain in my feet, pain when standing, severe flu-like symptoms, swollen painful joints in my hands, pain in cervical spine, difficulty walking, tingling under my finger nails, numbness in the feet. I did end up in ER with severe pain, couldn’t lift my arms, overwhelming fatigue.
This severity has settled down and I now have days where I can get out-and-about with stiffness ( I loved the “I walk like Frankenstein” comment, lol. That is me), moderate pain in neck, hips, low back, feet, hands, shoulders. Swelling has not been a big part of RA for me except within the first few months. The emotional toll RA has on my life has also been difficult to cope with but manageable.
My experience of flares are an overwhelming fatigue and feeling like dead-weight, close to paralysis, with severe pain. This happens less frequently. There has not been one day that has been symptom free since the onset of this disease and everyday the symptoms significantly impact on what I can do. So for me, flare simply means that the severe RA I have gets worse.
I haven’t found a good course of medications that work yet. I have persistent elevated liver enzymes with the DMARDS so methotrexate is on hold again, Humira was ineffective and I have another disease that makes trying other Biologics pretty risky. I currently just take sulfasalazine and plaquenil plus a fentanyl pain patch 12-25 mcg.
I do find that RA symptoms change so much – new ones crop up. Lately, I’ve had a very painful swollen gland in my throat on one side, a feeling of fullness, difficulty swallowing. So that’s a picture of my life with RA.
I have two questions for everybody. I really would love to know more about if and when people become disabled from working. My onset was severe. I’ve been unable to work since. Also, I use a wheeled walker and will be getting an electric wheelchair soon. This is all within one year from diagnosis. Does anybody else have a similar profile? My questions are:
1. Do you work in paid employment or not work due to your RA? Full-time, part-time?
2. Do you use a wheeled walker, wheelchair, cane, crutches?
Thanks all !!
I now call mine Baseline and Flare, since I’m never pain free. My joints hurt all the time, this is my Baseline pain, but then there are times when hands or knees or elbows or neck or shoulders or some other part of my body will explode with horrible pain that lasts for days or even weeks. I call this Flares. This week it is my ankles, ouch with every step, they feel like they will never work right again, but I have hope that this too will pass, at least for a time. I am on CIMZIA injections and just restarted MTX injections, the combination is making my RA life better. Good luck all. PS I don’t even try to explain Flares to non RA friends and family, they think we’re all crazy.
My current but future ex rheumie and I disagree about what a flare is, which is why he is my future ex rheumie. He took me off the mtx, and I asked him what to do about the flares. He said, “You need to come see me when you have flares.” I asked him how much rent would be. Because I am on about day 12 or 13 now of a continuous flare. I asked him what he thought a flare was. He said, “swelling.” I said, “you told me you can’t even tell when I’m swelling.” He said, “no, I can’t.” I told him that what my understanding of a flare is the time when I am feverish and many, if not all of my joints are hurting. It feels like I have the flu and several broken bones. He said no, that isn’t a flare. I asked him what it was and he told me to come back in 4 months. -boggle- Okay. I hope he’s not holding his breath.
Well i got diagnosed about 2 1/2 yrs ago. Been through all the trials of chest xrays, TB tests and on set meds of plaqunil,imuran,humira. Prednisone when feeling worse. I do notice my flares come with weather such as rainy day or cooler weather, stress or being overly active. They can last from one day to whenever. I know I had one the day after Christmas this year and I did not feel good again until into Feb. I had it one time in my jaw joint by my ear that was very painful and would not go away, did not want to talk or eat and it lasted from over a week. Thank goodness that hasn’t come back YET! I did ask my RA doc this last visit if… with being on the meds that you finally get figure out (and most times more than one) if that is as good as it gets? If it is normal to still hurt really really bad and for quite awhile sometimes. She told me unfortunetly yes because there are so many factors that affect those of us with RA, such as weather, stress and activity etc..so that pretty much told me that all you can do is get meds that help you the most and then just a matter of learning how to deal with your RA the best you can.For me meaning rest when needed sleep if i can. Learn not to overdo,especially on your good days and hopefully your family and friends understand what you tell them about how RA is affecting you. I never knew all about RA especially when i had the first earliest weird symptoms one little joint here and there, then my feet and swore i needed to buy shoes with thicker soles cause my feet hurt when i walked a long time. Then i woke up one morning the day after Mothers day feeling as I said (before i read anything about RA)to my husband i felt like i had been run over by an 18 wheeler. Even then they thought it was Osteo arthritis. My mother had RA but only started with one knuckle and then later a big toe but never went to doc or got any diagnosis. I didn’t know anything about RA since not been around anyone who had RA… not any of my siblings. So this was all new territory. I will add that I had other female issues awhile after the first knuckle and before the feet started. I was taken hormone replacement but was later taken off prior too most of the symptoms, not sure if that too might have been a factor. My feet still hurt badly and all my other joints as well. I just put one foot in front of the other and take it day to day. Wish good days for all of us!
P.S. I forgot to mention that I was ALSO diagnosed ..after alot of tests… with Fibromyalgia right before I had joint swelling and was sent to my RA doc.