Information & encouragement to fight RA
” My RA is always the same: 24 / 7. Ten feet deep. Wall to wall.”
Kelly, I have to agree with you on this one. For the moment I was diagnosed, I have not had a day where my body wasn’t out of whack. Even if I get some relief in one area, I struggle in another. Originally, it was my knees that were most affected, now is is my ankles and wrists. My toes have not stopped hurting in well-over a year. It hurts like h*ll if I bump them, someone touches them, and if I keep my shoes on too long. Unless, I have to wear shoes, I don’t. I take them off at work when I am at my desk. What I can say is that I have some really BAD days, and my good days are the ones that are not “BAD”. It does not mean I am pain free. I have not had any relief from my symptoms in well over two years. Unforetunately, my life cannot stop because of RA – I still have to work, finish up my masters, and take care of my family – and anything else that pops up. 😀 The business in my life has kept RA from getting the best of me. I really don’t have time for it to stop me.
Thanks for the good info. I’m learning a lot from all of these replies. Our situations sound similar. Within 6 months, my RA had spread to almost every joint. Well before the first year of “diagnosed” RA was over, it was every joint. Lots of joints that I had not known I had… So, now at least 5 – 10 joints are in “flare” at a time. And every joint is tender. There is never a lull.
My husband and I were discussing this very thing b/c of your topic yesterday. I have use people use the word “flare” for meaning days when all your joints are tender or swollen, and that would probably ring true to some degree. Yes, there are days when my symptoms are increased and for seemingly no reason at all. But what I have to think of as “bad flares,” as my rheumatologist calls ’em, are horrendous, rare, and at times, life-threatening. And as I said yesterday, they are ALWAYS tied to a stressful moment or a day of over-doing it. A flare will start for me with an all-over burning sensation. I notice that my normally stiff and aching joints are starting to get stiffer and more achey by the second, and I know that I literally have about 10 minutes to finish what I’m doing and lie down. The first two times when I didn’t know what was happening, my husband came home to find me on the floor unable to move or speak at all. He called the dr. who told him to give me 8 prednisone and then to get me to the ER. Twice since I have awoken him by poking him in the back and he knows what is going on immediately. The reason for me they are life-threatening is that once the jaw stops working, the throat begins to swell.
Sometimes if we intervene with rest, a bath, pain meds and NSAIDS, we can prevent the flare from going there.
If the stress is traumatic enough, as it has been this month, there is nothing to do that can stop it, and I have to enter the ER, where they diagnose me “Acute RA Flare,” and give me IV doses of meds to get me to the point where I can talk/walk again.
And so this is why I think those days that are just worst than others becasue we are trying to do too much are maybe not flares in the strictest sense – and that is what confuses people.
I will sit back now and await the debate.
yes this is soooo true.thanks
I don’t know how accurate it is to speak of flares. Neither my old rheumy nor my current one have ever used the word flare. My symptoms get worse when I eat a lot of sugar, and better once the sugar is out of my system. I really don’t know if that can be considered a flare if a flare is some mysterious worsening of symptoms that comes and goes without rhyme or reason.
My rheumy seems to think my symptoms are worse than I do. At least that’s my impression, since I don’t think I’m nearly as bad as it sounds like some people are, but she said that she’s laying the groundwork to start me on a biologic.
Have I ever had a flare? Don’t know. I felt much much worse last December, but started feeling better after Christmas. But after Christmas my plaquenil was increased to tid, then dropped back to bid when sulfasalazine was added. So maybe it was the increased DMARD rather than end of Christmas that reduced symptoms. Anyhow, I’m worse now than I was a month ago (but not as bad as last Christmas). I’m hopeful that come January I’ll feel better without an increase in meds, in which case I’ll assume I get Christmas flares.
Baseline… I’m a little stiff in the mornings. Usually it only lasts half an hour, but sometimes it lasts all day. My feet, wrists, shoulders, and elbows always hurt, sometimes other joints. My hands rarely hurt; I can still play my guitar. Before my diagnosis, when my feet hit the floor in the mornings, I would cry out in pain and fall back onto my bed, then ease my feet onto the floor so it didn’t hurt quite so much – when I get annoyed at the way I feel now, I recall those days and am thankful that I feel so much better. Fatigue is the other part of RA that’s difficult to deal with. I try not to commit to things in the afternoon. I can usually get through the day okay, but on days I’m not feeling as good, I need a nap.
Well, to tell the truth, mine stays in a “flare”. Mine didn’t read the book either 😕 My C-Reactive Protein and ESR stay elevated, even when I think I am feeling a little better, go figure? My joints stay swollen and tender, red and painful to touch. I am on so many medications it is hard to keep up with them, I should seriously rattle when I walk! But back to the subject of a flare, I would think of a flare as a big, red-hot fire shooting across the room, and that accurately describes how I feel most of the time anyways. So, that is how my RA flares can be described! RED HOT FLAMES SHOOTING ACROSS MY BODY AT LIGHTENING SPEED, SOMETIMES LITERALLY KNOCKING ME TO MY KNEES! :curse:
Sounds ouchy. Very descriptive. :thunder:
When I first went to the Rheumatologist, I got the impression that once we found the right combo of meds, things would be under control—remission. After several years of never returning to what I remembered as the old me, I’ve been hearing more about others that never returned to how things used to be. There is only how things are now, and worse. Sometimes worse is because I did “too much”, sometimes it is the weather, sometimes it seems random. Right now has been several weeks of worse, so I am wondering if this is another new normal or if I’ll get a little relief. I am still hoping for better because I am having to have more help and doing less. And having trouble finding my cheery self.
I have trouble distinguishing some “flare ups” from other illness, and now probably throwing change of life into that too. I don’t like going to the doctor, and I don’t like medicine changes either……
kmom…I can relate to what you said here. I asked my doctor recently “what should I expect from meds?” He said “no joint pain”. I’m a little skeptical about this from seeing how others don’t get complete relief after trying so many meds. I don’t have complete releif with Methotrexate and will be starting Enbrel next month, waiting insurance approval. So, I have wondered about what will be my new normal and how will it be in the future. This unpredictability day to day is stressful. How I feel seems to be very random as well. I am also having “change of life” thrown in. I will always have hope for better, and faith that God will see me through it all. Hope you feel better soon.
Kelly, have you written something about what to expect from meds? If you have, direct me to it please. Thanks:)
I got the same impression. It was not so. For 3 years, the doc gave me that impression. Then the doc got frustrated that my RA did not co-operate. Doc was puzzled. Maybe the books are wrong…
I’m with you. While I’ve experienced a little waxing and waning, it’s more like the “24 / 7. Ten feet deep. Wall to wall” you mention. I read about people going into remissions or having a “flare” but I can’t say that’s my experience.
Another case of the many faces of RA?
My joints got an F at Google university when I first starting searching for what ailed me before diagnosis. Left knee, shoulder and middle finger inflamed. Right thumb and middle toe inflamed. No, can’t be RA since it’s not symmetrical.
My doctor has never mentioned the word flare to me or I him. Since I am new at this, I’m not completely certain how my RA behaves. So far it is very unpredictable how I feel from day to day, and how I react to Methotrexate each week. I felt really good yesterday, more like my old self. Today my right hip is aching like heck and kept me awake in the wee hours. I am also fatigued. Anyway, I seem to have changes daily and weekly but no big bad flares so far. However, before starting on Metho. it was constantly BAD! Another consideration is ones workload and RA. I do not work, kids grown up, supportive husband. If I had a heavier workload I know I wouldn’t do as well as I do now. This I proved to myself pre-Thanksgiving when I had a heavyload. By the 3rd day I was very fatigued, foggyheaded, could hardly walk because of pain in my ankles and hips, and other joints ached as well. I feel fortunate RA came to me at this time in my life instead of when I had young kids etc. I feel for all of you that have to deal with this disease with a heavy workload,(I wanted to put a heart here, but don’t know how).
I am so glad to finally be able to comment on this blog; for some reason my home computer has a “flare” every time I try to comment and it refreshes me out of the box!
First, thank you for this site… this site has been a breath of fresh air after being stuck in a dark, windowless room! My daughter, 12, has suffered from RA since she was 18 months old and as she faced her second surgery in early November I started looking for RA blogs. I too have RA, but feel like the differences between what she deals with are astronomical in comparison to myself (very different patterns). She has been a warrior in the face of a lot of things and I feel that I have RA only so I can better care for her with a small understanding of what she deals with.
To address the topic of flare. For myself, I don’t know the word with my RA; I don’t have periods of time it is better or worse, it just is. For my daughter it is much different. As a growing child she would have a terrible 3-4 months followed by 6-9 months of quite time. I often called the 3-4 months the “flare”. In 2005 it changed and she started to have more continual issues all the time and since then having a quite time never lasts long enough to only consider the previous time a “flare”… she just has a good day or week… no longer the long stretches she (we) enjoyed before.
I have to tell you how much I have enjoyed so many of the articles that you post… I literally have tried to comment so many times before. The article on “what not to say to an RA patient” – love it! The article that talked about what is hard to do… mine… lifting the full coffee pot in the morning or scooping peanut butter out of the jar to make sandwiches for my girls. Rubber bands in my girls hair are probably the all time worst!
Thank you Kelly for the blog, for you candid and honest posts and for the thoughtfulness that is behind each of them!
Theresa, Welcome! We are so glad to hear from you. You can add a smiley by clicking on one. It will appear in your comment wherever your cursor is.
Thank you for the good information and kind comments. I hope we can talk more sometime. 😎
For me, the word flare is a pretty accurate description. Major flares include intense pain, stiffness, swelling, and inflammation. When I am not having a flare, I only experience occasional stiffness and slight inflammation. But, I also have seronegative RA. I understand that this type ranges in severity. Right now, I take methotrexate weekly and folic acid daily and it is under control. I have only had two major “flares” since my diagnosis 2 1/2 years ago. I have had some minor flares since then, including about a month ago. A minor flare for me includes manageable pain, swelling, and stiffness but I can usually control it with anti-inflammatories, ice, and rest. Minor flares just slow me down a few days. A major flare lasts much longer.
Just when I have my disease figured out in terms of how it’s configured for my body, it goes and does something new – a FLARE!
It used to be that in mid-winter I would suddenly get a flare, which I define as anything that sends me to the orth surgeon for a Kenalog injection. At first it was one joint, then it was like a gremlin lived inside my body and traveled from joint to joint. Then it became multiple joints at one time flaring. Now it’s even MORE multiple joints flaring with unheard of fatgue ALL the time. ESR is worthless in my case. I can be down for the count and my ESR is ALWAYS normal.
And now, ever since that Tdap booster almost two years ago, I’m finding that ANYTHING foreign that goes into my body [e.g., the flu shot a couple months back] is triggering a flare. It’s not supposed to, but you’ll have a hard time convincing me that it doesn’t.
Just today I decided to add a new electronic device in the entertainment center, which meant sitting on a foot stool to make the connection. Getting up was almost impossible. Then I was standing and bending down to reach an extension cord so I could plug something in……..hips are definitely out of commission.
You could not have said it better when you said
ESR is worthless in my case. I can be down for the count and my ESR is ALWAYS normal.
I was diagnosed with RA just over a year ago. My amount of meds has increased twice so far. There is a battle going on in my body between the meds and RA. I get severe “Flare Ups” even though I am on all of these meds which are suppose to suppress it. I have a great deal of pain in my hips, back, feet, wrists and I know when the flare up is here. However, when I go to the doctor, the ESR seems to be normal. I do not quite understand that with the pain I am in and obvious swelling of the joints.
We know our own bodies better than anyone but I feel like a fool when the doc says there’s no inflamation in your blood test…I don’t get it. What is up with that because I feel it and see it and become embarrassed that I hurt when shouldn’t be.
The tests are just not up to speed yet with the RA. Docs who rely on them blindly are sadly not practicing correctly.
As I’ve said before, if one of them is wrong, it’s not the patient doing his RA wrong! It’s the test that is still inadequate to detect the disease activity. Wouldn’t it be great if instead of us feeling embarrassed that the test doesn’t show anything, the doc was embarrassed at the inadequacy of the test? Haha. :chic:
I found a new doctor when I first started having problems and went to the dr because it just wasn’t right and wasn’t going away. They did a thyroid test and cbc. One of the people that works in the office called and said. You are fine…your tests came back normal. That was it…I was fine..I could feel better now. After a good cry I started looking for a new doctor. I must have had some good Karma going for me because my son went to work at a doctors office that week. She is wonderful and the reason she went to medical school and became a doctor is because she was diagnosed with RA. Needless to say she understands and keeps up with all the latest research.
Lisa, That was lucky for you. Is it your rheum doc who has RA? If so, could you send me her name via email if you don’t mind. Don’t worry about it if you’d rather not.
I’m one of those rare people whose RA was diagnosed, continued for 8-9 years, went into remission for 8-9 years — then came back. It’s now been 22 years since I was diagnosed. I mention all this because the way my RA “flares” is now different than it was during the first go-round.
Back then, while the bottoms of my feet hurt badly and continuously, I considered that just an aspect of the disease. The “flares” happened in one joint at a time, sometimes lightly (meaning I could cope with the pain and stiffness taking just Tylenol or, at the time, aspirin) and sometimes badly (heavy, intense, severe pain mitigated only with narcotic pain meds, and sometimes even they didn’t work). During “bad” flares the joint involved would generally be hot and swollen, and I couldn’t bear any pressure on it at all. It could be a joint in my hand, my wrist, my shoulder, hip, knee, ankle or toe, but it was always just one. These flares (both light and bad) generally lasted from 24 to 72 hours. And then they’d stop just as suddenly as they started. I’d have a few days, or a week without pain (except for the bottoms of my feet, as I said), and then another joint would flare. There was never any way to predict them.
When the disease was in remission, I only had a few light flares and a few bad ones throughout those years. I cannot express how grateful I am to have had that long reprieve. But I always knew that’s all it was. RA can’t be cured; I knew it was still in my body, but just being quiet for a while.
Today, the flare pattern (if you can call it that) is a lot different. The bottoms of my feet only hurt occasionally (for no good reason, as before), and the joints involved are mainly in my wrists and knuckles. The difference is that both hands are affected at the same time and the “flare” is continuous, waxing and waning in intensity, but always there. And, to my dismay, I am also having other joints “flaring” at the same time as my hands. Tonight, as I write this, my right jaw is flared, lightly, as is my left elbow, and of course both hands. None of the joints is intensely painful. It’s all bearable, but it’s also exhausting after a while. Fatigue wasn’t really an issue for me during the first go-round, but now it is. I’m always tired.
So after reading all these responses, Kelly (and great question, too!) it seems that “flares” really are perceived differently by each individual person. And not only that, they can vary in intensity and location, and even vary according to stages of the disease. No wonder even our rheumatologists have different perceptions of the disease, and really, no wonder the guidelines seem so limited. It’s almost impossible to come up with one, single description of the symptoms of rheumatoid arthritis. The only description that seems to apply to all of us is that it’s an autoimmune disease that attacks the joints (and perhaps other parts of the body), that it causes pain in various intensities, and that it may be disabling. The rest varies from person to person.
Finally, I have to say that none of the medications I’ve ever taken for RA — NSAIDs and DMARDS only, so far — have made any difference. My rheumatologist tells me my sed rate is lower now that I’m on Arava and sulfasalazine, but I’ve noticed no difference in the progression of the disease except that it’s slowly getting worse.
This really was a great question, Kelly. I hope there are some rheumys out there reading your blog and taking notes. Seems like they need to talk to us a lot more, doesn’t it.
Sometimes I wonder if it would not be better to find a Rheumatologist who also has RA. I wake up to RA, I sleep with RA, and in between I think about it.. I hold out a lump of hope in my throat that one day I will wake up and be the Viesta I use to be before that day in June in 2005 when I was told I had RA… I have had a few good weeks, but today it came back with a vengence… I dont have RA, RA has me….. I dont want it or want to share it.. I get to take meds in the morning, vitamins all day (for that just in case) and then meds at night, I take pain pills when it becomes too much.. I try to stay positive, but there are days when hope lays by the wayside… that is my impression of a flare.. along with the depression, being tired all the time… just being tired of being tired
Very familiar themes.
I have written that same thing about a rheumatologist w/RA. It seems like the best way to get some “progress” w/ RA – but even if a rheumatologist did get RA, she could not continue to be a rheumtologist any more unless it were the mild form of RA, which would give her the wrong impression of what we live with. I’ve obviously had this daydream a lot… :silly:
That makes a lot of sense Kelly, good point and for the day today, my theme today is I am glad we have the meds we have, even that pain pills I needed to take today, I am glad they are there for me.
I have learned that yes, I do need a lot of support as I continue to live with rheumatoid arthritis. But support is a two-way road. I too have to provide support to those who are around me, near and far.
Together, we can get though all of the challenges that we would otherwise face alone.
Kelly, I do experience “flares” with my AS. I ALWAYS experience pain. However when I have a flare, my eyes swell (Iritis), my skin gets itchy, my swelling increases in my joints and the fatigue and pain is so overwhelming that I literally cannot physically get out of bed. When that happens I take 1-2 wks of “dose packs” of prednisone which helps to get me through. Then its back to the usual every day pain which allows me to get out of bed (most days). Sometimes I have a bad day but flares last 1-2 weeks for me or longer if not treated quickly. I also increase doses of muscle relaxants and pain killers during flares. It is very strange that there is a such thing as a flare.
Stress and weather change has something to do with flares sometimes while other times it is completely random.
well, when my JRA flares,that day in morning, its mre stiffness n the whole day gets spoiled……..
Kelly, Rhonda and Kmom,
I am in EXACTLY the same boat. While it completely saddens me that you all are going through the same thing, it thrill me to have found this info. to arm myself with in which to tell/show my rheumy that I am not one of 10%, as she has said, that does not respond to the meds…it is obviously a much bigger number that have found little to no relief in spite of the “progress” of medicines. I wrote a post a couple of weeks back on my blog which describes the realization I faced just this past month that I was not just “one treatment away” from being my old self…in fact, it took me almost 6 years to realize this, so I’m slower than most!
I found this site because I’ve been in a “flare” so long that I finally decided to breakdown and visit Dr. Google after several years of avoiding her.
Had to comment about that 10% figure from your rheumy. I’d be looking for a new doc. The documentation that comes with Enbrel and Humira clearly shows that these biologics, when combined with mtx, do better than mtx alone but still only help 60-70% of people. If your doc doesn’t know the basic stats for RA meds, s/he is in the wrong field.
I’ve been through all the DMARDs, Enbrel, and now Humira with no improvement. I’m in the 30-40% with you, and feel better hearing words from someone else in my situation. Thanks!
gotta love Dr. Google. Glad to find out she’s a chick. 😉
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I too received the F- – in Rheumy 101 and FAILED with Honors.. My RA started years ago , misdiagnosed as Hey your Fat just loose weight.. to oh its sciatica learn to live with it.. Hey thats Carpule Tunnel.. Thats TMJ and yanno you got Tendonitis in your shoulders.. Oh lookie there thats a good case of well your still fat so its probly that…It got soo much worse… sooo much worse these past two years.. Finaly dx’ed this year and on methotrexate (with no releif) added Plaquenal to the mix on top of (still nothing) pain meds as high as i can go. swelling meds meds for my meds and some more meds for them too.. i take upwards to 30 pills a day.. And yes still fat Imagine that…. i cannot walk most days anymore. bathroom visits i plan accordingly.. I cry i whine i complain and yet i still have RA.. Meds dont work i think the further you go. Flares well i probly had them 10 years ago.. Flare to me means nothing.. Iam a hot flash (prednisone and 38 years old going thru menopause) I get shooting painful Flares when i do things like yanno MOVe and stuff. My legs feet and hands and face flare up with swelling.. but other then that Flare means not a lot..
I find it so odd that alot of people with RA can go about life and others it is their life.. why is that? where do i sign up for that cute Ra everyone talks so much about on the web?
Shannon!! You made me laugh. I guess it’s funnier to me because I’ve been there. Anyway, well said.
Yeah, I am on some kind of quest to find out where we make the exchange to that “cute little RA” too. I do not see the RA I know reflected on the internet or elsewhere.
OMG ~ I never made the connection before now….I had the pains in the bottom of my feet years ago and went to see a podiatrist…who prescribed orthotics….was diagnosed with carpel tunnel….and then the shoulder tendonitis diagnosis. Then the pain in the bottom of my feet started again….I could hardly get out of bed in the morning. And then the knees swelling like balloons was what led my FMD to test for RA. I have a wonderful FMD ~ she said the RA had come back only slightly positive but she sent me to a rheumatologist just to be sure. Thank goodness! I will never fault my FMD ~ she’s saved a few people in our family with early diagnosis. RA was never on my radar until I was diagnosed ~ and beleive me in my line of work I’ve read many a medical report but never attached any significance to a report that said the patient had RA. And now unfortunately I know….. Take care.
Does anyone else get HORRIBLE bone pain in the middles on the long bones. like say in your upper thich not near the joints? in the arm bones not near the joints randomly on and off for hours and hours at a time? feels like someone split you with a hammer then poof they go away only to come back two days later? ive had cts to check my big bones and they are fine.. but its deff not a msucle spasm its BONE PAIN.. just wondering
I experience that bone pain too. For me it is a cold, hollow feeling that sucks all vitality out of my being. It occurs to me like a secret tunnel to the basement below hell. I recognize it as a precursor to a bad period of swelling and “conventional” hot-pain in some joints. It’s the creepiest sensation, making me fear for bone cancer or the like. Sorry to hear others have it too.
Johnathan. I’m just diagnosed with RA and kind of lost and this morning found my way here to your post under flares. I’m dreaming of coming out of a flare (I guess) that kicked off my RA diagnosis in February of this year. I know it’s not funny, but when I read how you tied a tree to your leg so you could get out of there, I laughed! I’ve spent many years around a bunch of macho builders and believe me, that’s a mark of masculinity and ingenuity … making a splint out of a tree! I understand that feeling of strength equaling health, I feel the same (I actually was doing brickwork for sometime that’s how I know stuff about “strong guys” … I was one for awhile!) Let me assure you, kindness and vulnerability are also signs of masculinity much valued in this world. Good luck with your RA and your life.
My first “flare” was in the early days, 9 years before my dx. I was working on a log cabin in a national forest, having to hike 2 miles with tools and materials into the canyon. Around midday my knee stated to ache, but not knowing anything at that stage, I wrote it off to hard work. By quitting time I could barely move it and had no option but to duct-tape my leg to a small tree branch and head on out.
That was a long and epic journey – 3 hours later I crested the trail having belly crawled the whole way dragging my hurt leg limp behind me.
I have since learned not to put myself into situations that will require a difficult extraction. In short, I fear my body now that I know it can let me down with no warning. As a man, I consider that it negates my masculinity in some way because masculinity is underpinned by physical reliability. ‘Nuff said.
In my opinion (and many other women, I believe), the epitome of masculinity is inner strength, which you have in spades in order to live and strive with this disease. Physical strength comes and goes as a part of being human. It’s the inner strength that defines masculinity.
Shannon, I experienced that bone pain as a ‘twisting sensation’, in both legs, and could not sleep at night with it. During the day it was more of a stabbing pain. My rheumy had vitamin D levels checked, and found I was lower than the lab limits. I had a couple of shots of D3, and have been taking 2000u a day since then…..no more leg pains.I know others who are taking 3 times that amount.I hope you have discovered this by now, I just found your post. Kaytelle
I’m so glad I seen this as this is the pain I’ve had for about two years. Used to only happen when I bowled, but now it’s constant and sometimes I get shooting pain into my groin.
I get those bone pains. Usually after I am on my feet too long. I describe it as my legs are pinging. I will elavate them and use a hot pad on high. I can actually feel the moment the pinging stops. If I don’t rest when the pinging starts and use the hot pad the pain escalates and I’m in bed for a day or two.
Oh Shannon, I am so sorry to hear about your bone pain, but at the same time relieved that I am not alone. Sometimes every bone in my whole body hurts, not just the joints, but along the whole length of the bone. I cannot stand to have any part of my body touch any other part. One hand cannot rest on the other hand or one foot on the other foot. Sounds a little goofy, but the pain is greatly intensified by any pressure at all. Since we are talking in this thread about “flares” I suppose this situation would constitute a flare since it only happens occasionally, but I have other flares that do not include long bone pain. Bless you.
that would be THIGH not thich but now i wonder if there is a thich somewhere on my body , if there was it would probly hurt too…
:im 50 years young, that was until recently when i was told i have ra. now things have changed to the point i hardly know who i am or what i can do !!! i know there’s alot of things i can’t do and i don’t like it !!!! but what can i do about it ? nothing,live with it.i do have bad bone pain in my thigh area and i dont know why ither. i’m currently under dr’s care and know no one with ra im glad to see this site i dont feel so alone. Nothing cute about ra !!
thanks for validating Linda.. I have gotton random ct scans of my thigh bones and they show no issues.. i just get weird bone pain… its gotton better with my arm bones but with my thigh bones it continues even now as a matter of fact.. today is just a sucky sucky day.. my toes and feet and hand swelling didnt go down overnight like most nights.. so im starting the day swollen and in pain.. luckily i have already given in to it and have nothing planned but sitting here reading online. ; ) my heart to you sister linda
I was just wondering if you have had your doctor check your potassium? Sometimes it causes pain in legs and arms, just a suggestion. Godd Luck!
As with most things RA, I think the “flare” experience is highly subjective. I see where the use of this terminolgy can be confusing-sometimes I have a hard time gaging my disease process because I’m busy comparing my symptomotology to that of others.
For me, the use of the word flare refers to changes in my disease process, although I feel very lucky as I see few changes over time. My RA is managed very well by my bi-weekly dosing of Enbrel. I saw a rheumatologist within the first four months of experiencing symptoms and he started me on Enbrel right away following a positive diagnosis. I’m convinced that early and aggressive treatment puts you ahead of the curve. I think most physicians start with DMARDs due to cost-which I understand-but, I’m glad I started early.
Occasionally, like this week, I see more swelling, experience more dull pain in my joints (i.e. just before I wake, it seems I can feel every joint in my body), and have more fatigue. I typically note these changes to see if I can’t identify some kind of pattern, which typically-I can’t The pattern is that my disease is more active at times than others. So, I try to take it easy, get more rest, do some other types of interventions that bring me back to base. I don’t really know if those things work, or if “going back to base” is just part of the process.
I will say that when a “flare” occurs, my rheumatologist starts talking MTX, so psychologically, I kind of tune out. Fortunately, I don’t see him for another month, so hopefully I’ll be “back to base” by then. I’m really not looking forward to the side effects of MTX and am avoiding them at all cost.
As always, Kelly, thanks for the support and the opportunity to share with others. I feel relatively lucky considering, and my heart goes out to you all who are really struggling day-to-day. Sometimes I wonder if and when I’ll hit that wall, but until then, I want to support all of you who have. *HUGS*
Amy, Thanks for this description.
Can I ask about the Enbrel / mtx? Did he ask you to combine them? Usually Enbrel is prescribed with mtx. It’s actually unusual to start Enbrel first. I’ve been told the reason is that even a small dose of mtx is what makes helps prevent the RA patient’s making of antibodies against the Enbrel. Then, Enbrel “doesn’t work” any more. The side effects that people mention don’t ususally happen at a lower dose, dosages are not always mentioned. Maybe that will encourage you if he brings this up again.
I was diagnosed five years ago: my rheumatologist started recommending the combination about two years ago as my left wrist is starting to show some significant changes. I’m honestly not certain as to why he didn’t recommend the combination first, as I’m familiar with the research on the benefits of the combo…it could be that I responded so well, for so long (and for the most part, still am)-that he was satisfied with the results. I will ask him next visit as to why he approached my treatment without MTX in the beginning.
I decided I would take MTX injections since I tend to respond negatively to meds that cause nausea. I was prepared to go for it last visit, but no signs of swelling or pain, so he wanted to wait again. I’m feeling it now, though-so, maybe it’ll be moot and next time we visit, I’ll be on both. It helps that I’m uncomfortable-tends to push me to act.
Thanks for your feedback. Food for thought.
Best of luck either way.
A funny thing: I know people who take methotrexate for years and years, but would not touch Enbrel w/ a 10 foot pole. Guess it depends on what you’ve read. I was pretty ignorant about any controversy when I finally started the treatments – and extremely disabled. So, it was a no-brainer for me. I realize it’s not that way for most.
Amy and Kelly,
I was diagnosed with RA in Feb 2009 and my RA doc started me on MTX immediately then I started the Enbrel shots one time a week. I was feeling really good and by July I asked the doctor if I could start “weaning” myself off of MTX cause it always made me tired, and sometimes nauseous. He said that would be fine and that we would “save” it for a flare. I went totally off of MTX until hospitalized in September and off all the meds so I had to start all over Enbrel, prednisone and Enbrel. If I get the chance I will try to go off MTX again but we will have to see. Good Luck!
Good luck Michelle. I have never heard of saving mtx for flare. I have heard that for prednisone, but not for mtx. That is a new one on me. I hope you do great on the Enbrel!
I know that when I was first dxd they started me orally on MTX and Enbrel a month later. I had an adverse reaction to the MTX- and couldn’t take it. My doctor at the time put me on sulphasalazine – he believed Enbrel would work but was much more effective with then MTX. I have been on Orencia for the past 2 years. But having problems, so am going to see if I can go back to Enbrel-I found out the MTX via injection is not a problem anymore.
I just woke-up to remember something I must have put out of my mind. When I was diagnosed with RA, my husband and I were undergoing tx for infertility. It wasn’t until two years ago that we quit. So, that is the primary reason my rheumy didn’t start the treatment combo in the beginning. That whole experience was and has been more harrowing than RA, so I guess I’ve shelfed that away. I tried another DMARD a little over a year ago but was allergic to it. My rheumy is a little skittish about pregnancy, so therein lies the delay.
Yeah, I gather I am a bit unique with regard to biologics as my internest reacted strongly to my taking Enbrel. There is so much to consider and we all become risk managers to some extent. I respond poorly to medication and while I understand the risk(s) of taking Enbrel, they don’t “feel” as apparent as something that might make me feel nauseous or more fatigued than I already am. I am monitored very closely, I am careful about doing what I can to prevent infection, and continued research makes me feel more confident that I have made the right choice for me.
Thanks again for responding.
The ‘Flare’ I totally understand……. I have suffered with RA for 5 years now and have already been moved onto the anti-TNF drugs as it is quite aggressive RA I have.
My day to day movement is ok, limited but ok, yet on occasions when it ‘flares’ it will inflame the joint to the extreme so the skin cannot stretch anymore! the pain is too painful to explain, and I cannot move the affected area, (eg if its my wrist i cannot move my arm at all) however when an extreme flare comes it tends to zoom around my body on a mission and attacks many joints all at once and within days my entire body is burning from inflammation, too painful to lift or move any joint, and sleep is all you want to do but cant cos it hurts to lay down!! I will at this point by taken to hospital in any way possible and the docs pump me with whichever drug is going to ease it off immediatly. Then eventually the inflammation levels will drop and the pain eases. As i said my day to day movements now are better, I am able to do a little more, but still struggle, yet the anti-TNF drugs have officially given me a little bit of my life back…..
Flares are the worst, so keeping them at bay is better than nothing xx
I am seeing my rheumatologist for the first time in two days, but my RA began in Nov. 2009. I experience flares, meaning I feel little to no joint pain and they I flare up all over again. Each time I flare, I feel like I have the flu with sometimes a low grade fever, bone aches, deep muscle aches like when you are sick. I also get very extremely fatigued, and I mean extreme. Luckily, I am a stay at home mom/homemaker to an easy 4 year old and we take naps at the same time everyday. I get a break from anywhere from 2 days to 2 weeks before I flare up with joint pain, aches,etc. all over again.
How did it go w/ the rheum. dr.? How are you?
Hi, I always think that, what is a flare, if it is pain, swelling, stiffness, tiredness etc then I can say I am having a flare all the time. It could be when you have morning stiffness in your joints, so I agree who can define a flare.
My understanding is that it is all the above.
That about sums it up.
Flare? Don’t know the meaning of the word…
I have bad days and baaad days. I even asked the question of another Facebook site and really didn’t get an answer.
I think we tend to live with the pain a little easier on some days and things are a little harder on others. But for me, the pain does not stop as I see there are others with the same “type” of RA.
I only wish I could have a flare, that would mean an actual period of time WITHOUT one, that would be something to look forward to.
RA Warrior, thanks for this website! It’s EXACTLY what I needed. You’re amazing. I’m 26, I live in Kenya and I’ve been a warrior for 3 years. I understand the flares because I used to get those in the early stages. I’m ok for about 3-5 months then…WHAM! It attacks. In the past 8 months though, I’ve been feeling generally lousy all the time. The rheumatologist gives me a jab (no idea what it is) and I’m good for 12 weeks then after that I’m back to the lethargy and pain. Do the flares become closer in time as the disease progresses? I’ve noticed that with mine.
Daisy, I wish there were a clear pattern. Instead it is different for everyone and it changes over time. The only thing that is certain is that constant “flare” or symptoms that do not improve mean that the disease is not “controlled”. For some people, that is harder than others.
My flares come and go, could be okay(never great—pre self)and then for several days/weeks could feel worse. meaning more stiffness, fatigue, pain/swelling. Just dx 12/09.
I have flares, with 90 percent of the time in between with just the “run over by truck” feeling everywhere. Flares are added content. That’s when you turn over in the middle of the night in bed and find that your shoulder or knee or hip or jaw or whatever, has just broken. That’s the level of sudden pain. Then there’s the creeping red-swell. Maybe from some simple activity like pushing the vacuum or whatever, a bit of stress on a hand, wrist, arm, shoulder, later comes the faint pain and the red spot is noticeable as the swelling starts, especially in the wrist. The redness can be on the back of it, and that’s not as bad as on the inside of the wrist. Then I can’t open my hand. AND I have a bad liver from all the drugs. Methotrexate in particular, then I did work as an RN for 17 years, in ICU settings. Picked up Hep C and now I can’t take a lot of meds. Naprosyn is good, but watch the stomach. On Prednisone 10 a day till my liver dr and rheum dr can get together on what to do. have to throw in a psychiatrist to see if I am suicidal or not before Interferon can be started for 1 year duration – makes you feel even worse I hear. Hope 2012 really happens.
I am so glad I found this site as I have been asking the question about flares and what they mean/whether this is what I have experienced but unable to find the answer anywhere else.
I’ve had r.a. for 12 years now (my mother and father both suffered from it as well) and it came on after a near-fatal car accident which I survived but with multiple injuries. I also contracted MRSA in my pelvic fixator. Previous to this I was a very fit, healthy 45 year old nurse who worked 12 hour shifts, played tennis regularly, rode my own horse – you get the picture! Since then I have been on the whole range of r.a. drugs including methotrexate (gave me optical migraines and severe nausea), Humira (went into remission for about 3 years but got 2 severe episodes of severe pain which doctors thought were septic arthritis but I actually now think were severe flares as no bugs found in my joint fluid) and was taken off Humira and now Enbrel for past 18 months. I’ve just stopped it myself because last week I had another severe ‘flare’ which I can only describe as torture.
I had a pretty stressful weekend and that’s the only thing can think might have caused the flare – I woke in the night with painful legs, took 2 co-codamol and went back to sleep. Then I woke with such severe pain in my right knee and elbow that I was screaming uncontrollably. I couldn’t bear to touch or bend the knee/elbow and it felt like all the muscles had gone into spasm. It was agony. I was half-on and half-off the bed and couldn’t move. My husband was on a night shift and I could’t get down the stairs to let anybody in so couldn’t dial the emergency services. I had to wait like that for a couple of hours just screaming with pain. I cannot explain how awful that pain was but I just wanted to be put to sleep so that pain would stop. Eventually my husband got home but he couldn’t move me because of the pain and inability to bend my knee or even touch me. I called the emergency ambulance and they couldn’t move me either – they had to put a vacuum splint on my leg to try to get me onto the chair and even after morphine I couldn’t bear the pain. They had to call for a second crew to move me, it was so painful and they couldn’t lift me due to the pain in my left elbow which I couldn’t bear to be touched. I have never heard anybody describe their flares in this way until I read this thread. This is the third time in 12 years I have had this sort of pain, inbetween I am ‘OK’ but cannot get off prednisolone (only take 5mgs daily now) and am on nothing else now I’ve stopped the Enbrel. Going back to the flare, after 24 hours it started to wear off and after about 3 days on 40mgs prednisolone I was able to move better – I was in hospital for 2 days but they did not understand the level of pain this caused me and I felt they were judgemental because I had ‘r.a.’ and I felt like they considered me to be hysterical because I was suffering with a chronic disease. I am normally very sensible, work as a triage nurse on the telephone, and am definitely not hysterical. I just hope that by writing this somebody else will see that flares can be excrutiating and that they are not alone. I also hope rheumatologist and emergency room doctors will read this and better understand the pain that is indescribable and does not respond (in my case) to morphine.
I hope so too Jane. Thank you for telling your story. It made me remember times I really wished there were someone who understood that pain, too.
After 30 years with RA this is the flare that is causing me to be disabled, Enbrel and the like are not working this is the flare from hell! I walk with the aid of a walker now, can’t put a blouse on myself, basically this independent person is dependent and doesn’t know how to cope, frightened!
Hi Terri. Sorry it’s so bad. RA can take a lot of strength and ability very suddenly, can’t it? I hope they can find the right treatment so you can be at least mostly restored! It was frightening indeed during a period of months when RA did something similar to me so I know what you mean about feeling afraid. Will your doctor try another treatment for you?
First of all I would like to thank all who have made comment’s and most of all to you Kelly for starting this website.I have recently found out i have RA and everyone has been verry helpful in making me understand how flares affect each of us differntly and the same. I’m pretty new to this so i’m not sure if i can call anything i’ve been through a flare i have had lots of pain in diffrent joints at diffrent times but the pain in my ankel just wont go away some days both of mfeet hurt too. but i’m glad that my handa arsm wrist and shoulders are not as bad or close to as bad as when i first found out !!! prednisone and methotrexate combo have so far have helped dr. is trying to get me off of prednisone down to 2 a day but the metho is now up to 8 once weekly i only have 1 question for now will i ever walk without a limp or pain again !! ps. sorry if i offended anyone with my bad spelling or grammer.
Sorry you even got RA, Karen. That sounds like what they call a flare. We all do differently, but for most people, the RA does go up & down (flares). So there will be times you walk better than others. I have not walked normally for a few years, but I have heard from a few who can run & ride a bike! So there is hope!!
How on earth could you offend anyone, dear girl? :heart:
Karen – I’m sorry to hear that your ankles and feet continue to bother you I didn’t know what a “flare” was until recently, and had a hard time deciding if I had them, too! I’ve tried to kind of make up my own definition, because everyone is different…and I guess I would consider my joints to be “flaring” if 1. They are significantly more aggravated/swollen/painful than most days OR 2. Any particular joint feels bad enough that it really affects what I can/cannot do.
As Kelly said, there is hope, though. I discovered through this blog that I am one of the fortunate ones whose disease activity is greatly reduced with treatment (currently on Enbrel; previously on methotrexate; both work decently well). It took a while to find the right dosage and to be able to “walk normally” again. Since then, I’ve had mini-flares, but really only one time I would consider a severe flare-up (couldn’t stand for more than a few seconds at a time). I pray that you will find some relief! With RA, you never know what the next day will bring, but it’s taught me to just rely on God’s strength and provisions to get me through each day!
Sorry to hear what you’re going through Karen. I’ve had RA for about 3 1/2 yrs now. Fortunately, I caught mine just 3 months from when it started. I was on prednisone up until July, down to one a day though. I’m weaned off of it now so no more Alendronate but still have to take 2000 IU of Vit. D3 every day. I’m currently on Enbrel and 8 methotrexate pills a week and am having a flare-up now. It takes some time to just get that right dosage and the right medication. My first was Humira alone, didn’t work, then Enbrel alone, still didn’t work until I started Methotrexate with Enbrel, so it takes time. Maybe one day that limp will go away, mine did! Just stay positive!
Hello there…have gotten good information from this site and from this topic. I consider myself to be in an RA flare if the pain in that joint is making it impossible to move it without great pain. Otherwise my RA affects many of my joints on a daily and regular basis. Last week my rt thumb was so very painful and stiff that I was close to calling my rheum doc. I gave it “one more day” after popping a prednisone (5 mg) tab. Voila…the next day I could bend my thumb. Yes, it’s still swollen and affected, but the pain level went down. On two separate occasions when my wrists swelled up and were so painful that tears rolled down my cheeks, I went to my rheum for steroid injections. Same with my left hip when I couldn’t walk up stairs.
For me RA is a daily bout with pain that I’m handling with an arsenal of meds..I did quit working and that has helped me a great deal. Remicade handles the tremendous fatigue but not all the joint pain and swelling.
Isn’t it amazing how these “flares” and myriad of symptoms can vary so much?
Thanks for being here for us.
Ruthe, I think the word means different things to different people. But to me if the RA is painful & debilitating, it’s not “controlled” or out of flare. And I agree the varying thing is amazing & it confuses the docs & everyone else. That’s why I learn so much from you too. Thanks for contributing.
I think I have been in a flare then since diagnosis! I was diagnosed in April 2007. The fatigue got better with the first treatment, but since then , not a day goes by where I don’t hurt! Trust me, I am still working full time, I’m not as severe as a lot of you are…no deformities, which makes me “unbelieveable” by docs. My current (maybe soon to be fired) rheumy told me in September that my wrist pain was fibro, that my RA was stable, my labs were all normal. Ortho went in to do an arthroscopy – found TONS of dead RA “crap” as he called it. He removed it all, I still have some active inflammation, but he said it should eventually start feeling better…It is to some extent. I can’t wait to tell the other rheumy in that practice (the owner) what her associate told me!! That fries me!! I’m scheduled to see a new rheumy in December in Boston. Hope I get more insight (and compassion) from him. My current rheumy won’t even give narcotics to anyone!! Fortunately my hand ortho guy’s wife has RA, (well not so fortunate for her) but he really understands where I’m coming from, so he gave me some Vicodin and Darvocet! What we have to endure to get some relief!
Hi Marie, I *hear* you. You have hit on several important points that show some of the reasons we are using this site to try to educate the medical community. I’m glad you finally did get the right help. Hopefully, you have copies of your doctors notes from each doc in case you need them some day. And thanks for sharing your story here to help educate, too.
I guess I am pretty lucky because my rheumatologist has my RA pretty well under control. I do, however; experience the occassional ‘flare’. When the ‘flares’ do occur, she has given me an additional prescription (Mobic)that I use only when I am flaring. My ‘flares’ occur mainly whenever the weather changes to cooler damp or just wet weather. This evening for example we have snow moving into CO; so I am starting to ‘flare’ and will take the Mobic in the morning.
I feel lucky also. For about a year now I feel almost cured….even though I’m not really. My doctor and I have found the right medicine and the right dosage. I have been able to go hiking, climb hills, no stiffness at night and the best of all, I can get up and down from chairs (and toilet) with no difficulty in my knees…until my “flare” showed itself. In August the doctors found a blood clot in my leg and I am on Warfarin until about February. About a week after starting that medication my arthritis flared really bad, ughh, it’s horrible. It’s so depressing thinking that you’re almost back to square one. The doctors say that there is no effects of the warfarin on my methotrexate, if anything, it’s the opposite. Well, what a coincidence about the timing of my flare with the start of warfarin. I see my rheumatologist this month and we will probably discuss an infusion treatment. I’m a little nervous about it. The things we RAers have to go through!
After reading through all the comments, I am definitely feeling lucky that I am one of those who has been able to find a combination of drugs that help me to be “highly-functioning”. I can do most of my normal activities, though most of them do cause some level of pain. Some things I have had to give up or severely scale back, but compared to some of your stories- I feel fortunate.
That being said- for me, a flare is a significant increase in pain, stiffness, or swelling that what is my “normal” level. I am never pain free, I am never stiffness-free- but yes, some times, either from overuse or maybe no reason at all, one or more joints will be much, much worse.
Also, I am one day late taking my usual MTX dose, and I can barely type this, my fingers are so swollen. It helps me remember, when I am feeling good, what lurks beneath the surface of the medication. If being one day late can cause this….I hate that I am so dependent on medicine to live my life, but enormously grateful that I have it.
I have to say, like some others on here, my Rheumy hasn’t ever mentioned a flare to me, but then again I was only diagnosed in March and only see her every 3 months. Flare for me is when everything hurts again like it did before I was officially diagnosed. Hurts to walk, bend, breathe, write, and generally move. Then one day, I wake up and I can do more than the day before. Mine started in my feet, and I remember my son accidentally bumping them, and I fell to the ground in pain. It was insane, but I still had to get up and keep moving. RA never lets you stop. Life still goes on and you get the rolling of the eyes. Recently at work I had a lady say ‘why can’t you walk today’? You were fine yesterday! My response to this oh so wonderful person was ‘well I decided I needed a little extra sympathy today so I put on my RA legs today”. Mumble a few other things in my head and hobbled away. So, to make a long story longer, my definition of a flare, is when it hurts more than normal and the tylenol doesn’t help.
I appreciate this post and the responses. Honestly, my rheumy hasn’t mentioned the word “flare” to me once. From the beginning he told me that the goal is get me into remission=pain free or if I fall into the percentage of people who never reach that state, then he wants to make me as pain free as possible.
After close to 3 years on different meds, and in constant pain 24/7 365 I believe I fall into the category of those who do not have a remission (from the posts I have read on-line this seems to be the majority of RA patients, not the exception).
I was inquiring about the definition of “flare” because so many people on-line talk about it and I had nothing to compare it to since like I mentioned, my joints always hurt, are tender, and swollen to the point that simple everyday tasks have become a challenge – combing my hair because that involves my fingers, wrists, elbows, shoulders & neck; cooking – again all the above plus my feet, ankles & hips; sitting & walking – again all the joints already mentioned. Even laughing can be painful because it involves my rib cage and that is always tender & sore.
To me to the bottom line is that my life has been drastically altered and I have to continue to constantly adjustment to my ever changing body.
Thanks Tonia. The responses are always enlightening to me too. Gives me an idea what all the docs are telling patients too. Mine never has used the word flare to me either.
Flare up’s suck! I have been living with the RA label…err diagnoses for 10 years. Yes I too have pain 24/7 but before a rain storm, or when cold weather hits I will have joints that will hurt more than normal. I dread winter every year. Through trial and error,I figured out that eating processed foods, red meat, colas, or sugar caused my joint pain to increase dramatically, and my hands and feet to swell.
Since taking processed foods out of my diet, and adding honey and cinnamon in, I have been relatively pain free and off meds entirely for about 2 months now.
I still avoid drafts as they are like an icepick to my joints, and have days where the fatigue is so bad all I can do is lay in bed or sit in a chair in an almost catatonic like state. My mind will be thinking of all the things it wants my body to get up to do, but my body just sits there, or lays there being quite uncooperative.
Nice to know I am not alone in this battle.
I just found this conversation, and found the posts very interesting. I’ve been wanting to ask if anybody else gets flares in response to antibiotics? I swore off them for years because of my reactions to them–additional swelling and pain–but as I’ve gotten older and my health more compromised, by Enbrel, heart condition, etc., as well as the Ra and neuropathies, I and my doctors are afraid for me not to take them when I have infections. Of course, it could be coincidental–I once had a dear, sweet, well-known rheumy who would say “You’re NOT going to try to figure out why it exacerbated, are you?” (with a chuckle)
Since many of us are in constant pain…I guess I define a “flare” as pain that”s worse then “normal”. I tend to believe that to many warriors, we use the word “flare”, when things get almost unbearable in one particular area….The usual pain “just is”….but sometimes my back, or hip really “light up”. I am doing ok on a mtx/enbrel combo and seem to be better…my pain is less (mostly), then before treatments. But I too await a pain free day.
I think it is different for some than others – how many joints really matters too. If for instance, RA is in every joint, and they take turns about 10 at a time, it doesn’t give one a chance to have a break between flares. So maybe that is part of the equation. It is a mess of a word in my opinion at this point.
I think of a flare as a sudden massive increase in pain somewhere in my joints or as that overwhelming fatigue that hits me like a tons of bricks. My family and beloved best friend have adapted to this disease with me so that I don’t have to explain the flares, only what my needs are when they occur.
I have been living with RA for 6-1/2 years now. I can personally attest to the lack of misinformation and/or knowledge and/or experience in the medical community…in more ways than one. In my years of practice as a nurse, I’ve cared for many patients diagnosed with RA, including children with JRA. Although I “understood” the diagnosis, I can readily and fully admit that I had NO CLUE what the diagnosis meant until it applied to ME. Now that I have first hand intimate knowledge of RA, I know that I would have approached the care of my past patients differently.
As many others of you have stated, I secretly wish that all physicians (not just my Rheumy) could spend some time “in the shoes” of an RA patient… it would without a doubt change the way they approach the treatment of their patients. If they could spend time in the shoes of A DOZEN RA patients, perhaps they could get a handle of how differently each one of us individually experiences the diagnosis of RA.
It also took experience for me to understand what “flare” means to me. I am one who has responded well to methotrexate and Enbrel and prescription NSAIDS. I am not even CLOSE to being the strong woman that I once was before RA, but the meds have made my life with RA better. If I need to be reminded just where I have come from, all I have to do is get sick and have to stop the meds for the duration of treatment for illness. That is when I will flare. The unbearable pain, swelling, PAIN, inflammation run-amuk…becoming aware of joints you didn’t even know existed…feeling like you have the worst case of the flu ever…and PAIN, indescribable and debilitating PAIN.
I can flare on my meds too, especially when I am experiencing significant stress in my life. When I have a flare, it usually requires treatment with prednisone until I can resume my meds. And while steroids can bring welcome relief, the side effects…ugh! A few years ago during the Christmas season I flared from the combination of stress of the season and the first anniversary of my mother’s death. All I can say is that I strongly discourage Christmas shopping while undergoing steroid treatment!
I have seen so many doctors, and have heard time and time again things like, “You get around pretty good for having RA”… Appearances can be so deceiving! Sure, I may look “fine” at a scheduled appointment…I do try to schedule for a time when I might still have some energy left… Anyway, I had to go off my meds for foot surgery in 2009. My orthopedic surgeon was one of the “You look pretty good…” ones. Well, after being off my meds for the prescribed time, I arrived at the surgery center very early in the morning on the day of my procedure. I was prepped for surgery. When my surgeon arrived and came to speak with me before taking me to the OR, I showed him my hands and my wrists that were so swollen, red, and hot to the touch and I told him, “This is me off my meds. I will need a prescription for a wheelchair because I will not be able to use crutches.” You could see it definitely impacted his perception of me and my RA. Although he never mentioned it, I read in my post-op notes that he gave me anti-inflammatory medications IV when he had completed my surgery. I later thanked him for that. He’s a great doctor and surgeon, with perhaps a little more insight into “our world”…
So, anyway, in my case, a flare means a significant increase in my RA symptoms that requires additional treatment, usually a course of prednisone.
Teresa, thank you for these comments. You said many important things that I wish the world could all hear. I have been there and many of us with RA have. And most without RA would shake their head, not knowing what we mean. But we can keep trying to communicate it and you did a great job here. Thanks.
So glad I found this post and comments. After reading all of this, I now have a much better understanding of “flare” – first, it is different for each person – second, it seems to be used to describe something worse than a particular person’s idea of their “normal”. And there are all levels of “something worse than normal”.
My first flare was unbelievable pain in my hands and wrists. What I have now I would describe as uncontrolled RA since I have daily pain, stiffness, swelling, fatigue, lack of sleep, etc. – but not the horrible pain like at the beginning. The MTX and Plaquenil aren’t working well and I’m on Prednisone as I await approval from the insurance company for Enbrel.
I’ve learned so much from this website – much more than I’ve ever learned from an RD or anywhere else on the web. Having confirmation of similar symptoms from real RA people has been so helpful…now I know these aches, pains, and fatigue are real and RA-related. The saddest thing I’ve learned is that RA is much more complicated than I could have imagined.
Thanks, Marie. Good luck with the Enbrel.
My RA hit hard and fast and I went from really bad pain in a couple of joints to really bad pain in most of my joints most of the time within 2 months of onset. I was on Methotrexate but it didn’t seem to have any effect.
Here is my story of a really long night with RA:
When a knee flare first starts it feels like I’m out of joint slightly, there is mild pain and some pressure. Then as it progresses the pain becomes constant and it’s as if my knee is broken, it won’t bend correctly, there is lots of pressure in the wrong directions, it feels like it’s constantly being twisted the wrong way. Then when the flare is full on it feels like my knee is being sawed through very slowly, the saw never finishing the job but just going back and forth ripping out bits of me. Now add my other knee, an ankle, a few toes, both elbows, a shoulder, in around my collar bone, a hip, both wrists, both thumbs and most of my fingers. All these parts of me being attacked by an invisible saw. Now add my vocal cords so even as I cry out because I can’t move and the pain is so bad and I need help my voice fails so I just wait, minutes seem like hours, until my wonderful husband, Bob, checks on me again. I take more pain pills but they can’t touch this pain and I’m already over the maximum dose. I desperately want to blow my nose because I’ve been crying but I can’t move my arms so Bob has to hold a tissue up for me and it’s clumsy and I get goo all over my face and I just want to die. I’m thirsty but I’m afraid if I drink I’ll have to use the bathroom so I don’t. I feel that if I could just shift my body slightly on the bed I would feel a little relief but even though I know it won’t work my mind torments me, sure that if I could just lie a little more on one side I would feel less pain. Finally I try to move, just to roll onto my side but I can’t and after several attempts I give up. I wake up Bob and he moves me and props pillows but just a few seconds on my side and my shoulder makes me start screaming in pain. Bob puts me back and I try to stay quiet because I know how badly he is feeling for me and how tired he is and it is still several hours to go before dawn comes and we can leave to the doctor. My nose itches but I can’t scratch it. The feeling of helplessness becomes so overwhelming I start to weep and Bob has to come to the rescue because I start choking on my own tears. He props me up more and talks to me quietly until I calm down. I make him promise me that if the new drug doesn’t work he will let me go. He gets upset and tells me the drug will work, but I have to know that he won’t hold me here if my body stays this way and nothing works. Then I laugh and tell him that there’s not much to worry about when I can’t even blow my own nose.
So thats it. Several hours later I sat in a wheelchair and was given a shot of Depo Medrol and put on 20mg maintenance of Prednisone. By that night I could roll onto my side and get off the toilet by myself and by the next morning I went back to work.
People that don’t have RA say it causes stiffness and pain. Those words seem awfully benign to what really happens. The stiffness is incredible, it’s like something wraps you in invisible packing tape during the night. It’s not just morning stiffness either, for me it was like a heavy fog, lifting slightly in the middle of the day only to roll in again by late afternoon. And the pain…I didn’t know they made pain like that. The words ‘Rheumatoid Arthritis’ should put the same fear of God into people like the word ‘Cancer’ does, but it doesn’t. People hear Rheumatoid Arthritis and they think it’s like having the ache and stiffness you get when you worked out too long doing something your body wasn’t used to. It couldn’t be further from the truth.
My rheumatologist left me on the prednisone because without it I couldn’t walk. I still had a lot of pain but at least I could function. I started Humira and was very lucky as I felt improvement exactly 3 days after the first shot. Even though I rapidly improved to the point of pain free I already had permanent damage in my ankles just 3 months from onset. My biggest fear is that the drugs will stop working. My biggest frustration is all the people that think this disease isn’t serious. My biggest hope is that some rheumatologists will read this.
Wow – I just read Lisa’s story. Lisa,you show such strength in sharing this with all of us. I too had experiences similar to yours when I was the the throws of Ankylosing Spondylitis before diagnosis. Remicade gave me my life back and I so understand the fear of “going back there.” For me I try to share my story but I haven’t been able to recount some of these raw emotions and times it was overwhelming and scary. I’m afraid to go back and relive them to write about it so I thank you very much for your courage. Gentle hugs – Jenna
I also just read Lisa’s story. As the mommy to a tiny warrior, I just have to thank you. I really hate knowing what it must feel like to her, but it’s so much better than not knowing what she feels like. Thank you so much for sharing an obviously painful, difficult story so that some of us “outsiders” may understand.
And Kelly… I was also very confused upon hearing this first. I thought I kind of understood it after a while, asking other parents of sufferers. I’m not sure that I’ll fully understand until I actually suffer through it, which may or may not happen. I have asked my doctor to do an RF panel, but he claims that my elbow, shoulder, & knees won’t be affected. He blew me off so quickly that I forgot to mention the few times that my hands have stopped working, and I felt it all the way up to my elbow. For now I’ll just keep an eye on it.
I’m trying to understand. Did a rheum doc tell you that an elbow or shoulder or knee wouldn’t be affected by RA? I’m sorry if I’m confused. That “he blew me off quickly” thing is something I hear constantly & that bugs me. If you can’t be “heard” by him, I hope you’ll see someone else. I’m sure you know all the reasons that early treatment is important – many patients have damage before they have a diagnosis. Let me know if I can help. I know we are only about an hour apart, right? There is a Do I Have RA? Page on the menu with some links that might help.
I have had R.A. since 08 and it was so bad before I got in to see the Rheumationd Dr..well it took about a year for the drugs to kick in . and in 2010 I must say I was doing o.k. and realy felt good and I’m like wow this must be the remsion they talk about like I was normal . So I decided in May of 2010 it was time to rid my wieght that I had gain and start walking and hiking again well I surprised my Rheumie when whe saw me Sept 2010 I had lost about 55lbs and was looking good and she was proud well I’m not sure if it’s the wieght loose or not but know at 75lbs light My friend R.A. has decided to wake up and with a vengance the flares are so bad . in my feet my shoulders my mid thorac spine my hands are so bad with the pain and they get so cold I put then running hot water and that feels good .So what is a flare when everything hurts even the clothes on my back hurt ,when even my skin hurts, thats a flare . I wonder the Witch with the capitol B is back just to let me know Hello I HAVEN’T GONE ANYWHERE . But I will continue to loose more wieght I have 40 to go and flare or no flare I will smile grin and bare with it because with the Lord with me I can fight anything , but If someone tells me I’m sorry I know how you feel . well unless they have R.A. NO THEY DON’T …. Let
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