Information & encouragement to fight RA
I have had major swelling in most of my joints. Have been diagnosed about 1 year. About 5 years ago a Rheummy told me I did not have RA.,the swelling was from overuse. I now have high numbers on my bloodtests, swelling, stiffness, and heat at my joints. I also have RA in my neck. Lots of popping and pain. Meds are Plaquinell and Enbrel(not helping yet). I have had plenty of fatigue for the past couple of weeks. Thank God I have a good Rheummy now. She is careful in her exams and listens intently. Does anyone know why as the weather gets warmer my pain increases???
Cheryl, usually what I am told about that is this: changes on barometric pressure can increase pain because of internal inflammation. If the warmer weather is brought by a higher pressure system, then that makes sense.
As for heat itself causing pain, I can only guess that it would be caused by the fact that things expand when warmer, so if there is swelling, it might be increased by heat. Just a guess. Thank goodness for your good new rheum dr.
I have a question about the warmth of my joints, my hands,feet and knees are all very warm to the touch (almost hot). Is this the disease process? That’s what I’ve been told.
Cheryl, Yes it’s a typical symptom of the disease. Some patients have warmth and some don’t. Damage or pain can be occuring either way.
OMG! I rarely get any swelling with my undiagnosed RA and am pretty confident that mine is actually the Palindromic type. It is a hit and run maniac. Only do my knees ever show swelling, but I can feel it in every joint when flaring. And even then my knees do not look swollen. This week my knees have been pretty good, however, I am getting the familiar snapping and popping of an oncoming flare in my ankles and knees again.
Fortunately I have been getting some new and eye opening family medical history, so I will be doubly armed when I see my GP next week. She is the one who found the higher level of my CRP, but no other blood markers. She has been somewhat sympathetic to my issues, even though she keeps telling me she can’t help with any pain issues. It is a clinic and I guess she doesn’t get it that I am fine with the pain, I have been managing this myself since I was 15 and just want to finally get a diagnosis in my file! GRRR!
Sometimes these people can be so frustrating! But I still am confident that no matter if I have to bang these drs over the head with a ton of information, I will get a diagnosis one day soon… and I was diagnosed with FMS over 12 years ago too.
i think all Dr,s think we r after pain meds cause we wont to be doped up all the time!!I always tell my Dr I don’t want anything that’s gonna make me sleepy Cause I take care of my now 4 yr old Granddaughter 3 days a week.
Ok….I’m a little late to the discussion on this one. I actually just recently discovered RAwarrior and haven’t been able to get off yet! Anyway, my story is an interesting one. I had swelling. Alot. Particularly in my knees. However my first rheumatologist, even though she saw the swelling first hand, didn’t diagnose me with RA because my RA factor was negative. At one point she even told me to see a counselor. I asked to get a copy of all my blood tests though because she wasn’t giving me actual numbers. It turns out my platelet count was 700…yes…700,000–almost double the normal high level. When my regular doctor who had been seeing me for almost a decade found out (because I had been so worried about the RA I hadn’t gone to her in a good while) she threw a fit and informed me that I could have had a stroke. However, now that I’ve been playing with medications and have been properly diagnosed and have a decent Rheumy, the swelling doesn’t show up at all hardly–even when I have a flare. I can see changes because I see my joints everyday and most of them are smaller even for a normal person so that unless it’s extreme swelling it doesn’t really show at all to an outsider. I’m just worried because my new Rheumy missed those early days of extreme swelling he’ll start to doubt my problems since I’m seronegative. It’s been a long time coming to this diagnosis at all and having my first Rheumy tell me to get mental help really stung. Maybe I’m just paranoid now about doctors turning me away when my problems are most certainly real.
You are not late at all. This page is read daily by someone. Most do not comment. Your information is helpful to them and to me.
Most of the things you say do sound familiar. I wish every doctor could understand how to correctly diagnose RA & how to treat people right. This is my golden rule for docs: Treat the patient the way you would want your mother to be treated.
Why is it that a Dr would think U R mentally ill, when u have the swelling and pain!!! OMG, Ill bet u were going nuts trying to cope with it all. Thanks GOD they finally found the problem. Did ur other Dr contact the one that told u to seek counseling??
Hi! I actually had my gynecologist say I needed to see a Rheumey, because I told him every orifice in my body was drying up. He asked if I hurt any where and I showed him my hands which my knuckles where all swollen and stiff……….My feet too. The swelling in my hands goes up and down each day. The stiffness waxes and wanes.I am sero negative but I continually ask my Rhemey if I really have it. She always tells me she is sure.
They’re pretty cautious about diagnosing RA, Steph. I do have swelling now that waxes & wanes, too. Reading the other comments here, that seems pretty common.
Hi Kelly – I am seronegative and always have normal blood work- no RF, normal sed rate. Once I had a very elevated CRP, but I also had a sinus infection at the time which could have been the cause. I am an RA newbie – 8-9 months in. We are still not 100% sure if I am RA or spondy, but it looks more like RA. Anyway, my hands get very sore and stiff, but they do not swell. There have been times when I have totally lost my grip, but still no swelling. My feet swell in the evenings on occasion, but it is the kind of swelling like when you have been on an airplane too long or when you have walked around in the heat for hours. I’m not sure if the foot swelling is caused by RA or something else. I’m very healthy otherwise and do not have any other health problems. I also have enlarged “knuckles” on my toe joints, and I’m not sure if this is swelling from RA or something else.
Hi Marie, Whatever it is, I hope you caught it early enough to help. As you can see in the 113 comments, there are lots of people who don’t exibit swelling even if they do have a positive Rf or obvious damage. As for me, there has been more swelling in the last year – these things tend to vary over time as does the Rf result. It’s obviously not THE measure of RA activity. Those toes sound “suspicous” – I’d keep an eye on them, taking pictures whenever they look unusual. Joints have a habit of looking better in the doctor’s office & photos come in handy, so I’ve learned finally.
Thank you Kelly! You are a gift to the RA/arthritis community. I had a chuckle over your comment “Joints have a habit of looking better in the doctor’s office”. That is so true! My RA started with bilateral hip bursitis. It felt like hot daggers were being twisted into both hips. At first it was sporadic, then it became 24/7. I ended up in the ER on two occasions because the pain was unbearable and I could feel heat coming from both hips. And still, ESR and CRP were totally normal during these episodes. Several doctors suggested that nothing was wrong with me. One of the ER docs lectured me for coming to the ER when “nothing was wrong”. Well, I couldn’t walk, eat or sleep, and in my mind that constitutes an emergency. Before the RA hit, I was a fitness fanatic and very in tune with my body. I knew that something was wrong, and I was not prepared to stop searching for answers. It took five visits to the rheumy before he would acknowledge that the problem was systemic.
scoffing out loud here, Marie. That’s too common. Grrr. :-/
Q; Do you have it all the time? Does a joint ever hurt and creak without much swelling? Has your pattern of swelling changed over time?
A; Yes I regularly have pain & stifness with little or no swelling. If anything does swell its likely my right knee & my fingers/wrists sometimes get puffy but never like they did when I first presented to the GP with my sausage style fingers and swollen wrists.
RA Inflammation markers
Q; Have you ever had a normal CRP blood test result while you still had RA pain? Do you ever have normal ESR / sed rate result while you still have RA pain?
A; Yes my crp has been <8 for a good 2/3 years on the whole, but I still have daily pain & regular flares & am unable to do daily activities without paying for it big style.
Q; Has your doctor ever told you anything similar to…? “I don’t understand why you say it hurts because I do not see swelling;” “Perhaps this pain is due to something else because your inflammation is under control;” or “Your joints look good. Your RA is under control. Maybe you need an antidepressant or….”
A; This one is trickier to answer, none of the specifics have been said to me but my rheumy does say that he's happy that things are under control, my bloods are steady, so did the last 2 rheumies. If this is the case then why do I now have secondary OA in both hips,something was clearly going on in there, along with daily pain and frequent flares. Surely under control means I can mop a floor without suffering for 3 days after? Not so!
Thanks for the great replies! I know others find them helpful.
Another great subject and certainly relevant to me. Now I’m not sure if I’m lucky that all my bloods remain high or not! There is little question that I have RA (none actually). Before my RA diagnosis I have questioned my previous doctor (GP in Australia) on numerous occasions why my ESR might be consistently high. I had general blood tests every 3 months as a diabetic – so saw my high ESR and I am an RN. General response was there’s probably some inflammation there (goodness – you don’t say! 😕 ) I changed GP because I moved half way down Australia.
When my more specific RA symptoms started about July 2008 – I woke up in excrutiating pain in my left hand/wrist at about 2am whilst staying in a hotel 4 hours from home :no: . The other symptoms started about 3 months later. I have had swollen painful knees since I was about 14. However my left knee generally remains the worst and is almost always swollen. Just to add to the effect they make crunching, popping and audible noises particularly if I attempt steps/stairs – luckily my home is on one level.
My toes are migrating(toe 3 on both feet are leaving the others behind) and I have nodules starting on both second toes – a match! But they seem to come and go. Fortunately my right toes are going right and my left toes left which is again lucky as my balance isn’t great – it might even improve.
My fingers are getting stiffer and are generally puffy – so I don’t have well defined knuckles. Relating to my other bloods – my CRP has remained elevated at 20 mg/L currently (normal 0 – 6 mg/L)- I think you use a different scale in the US.
At present I am limited with medication due to persistent elevated liver function tests and enlarged liver. My gastro did a liver biopsy and has empahatically said that MXT would be dangerous – so for RA am on Arava, Prednisone and Sulphsalazine . However my Rheum, disagrees and wrote to my GP saying that ‘I’ decided not to take MXT and leaves out the gastros warning!!
I have anaemia and an enlarged spleen. I see my Rheum next Thurs – after which I may be seeking another.
I also have an appointment in August with an ‘Independent Dr’ :doctor: (may I use ‘independent’ loosely?) appointed by my Income Protection Insurance Company. Hence I am a little nervous as the ‘independent’ Dr historically tries their hardest to prove that you are a fake. Concern here due to lack of swelling at times.
I will be taking a myraid of Drs notes with me and I’m really sorry to say that I have actually thought ‘maybe my swellings, stiffness etc will be more visible that day’ – it’s just a shame that we haven’t got a ‘pain indicator scale’ somewhere visible to doctors (you can’t expect them to pick up on non verbal cues can you? Too hard).
As I cannot work as an RN(my career for 26 years)or any other position at the moment and maybe never again – I am sadly dependent on my insurance company. However I’ll cross that bridge when I come to it. In the meantime please wish me luck both next Thurs and in August. Once again thank you so much for this site and sooooo may topics I relate to.
Hello to Australia, Kathryn. Well, I wish you luck next week. Do you have any photos from when it swells? I have started to take pictures – I really wish I had the ones from before I began meds. We don’t have the “Independent dr” here. I hope it goes well.
HI Kelly! I am late giving these to you but would love to see what you have to say.
My swelling is off and on. I have noticed it in my hands but my rheumatologist does not notice even when I say they are. My two pointer fingers are the biggest culprits. I also have bursitis in both hips which he has recognized and has treated with cortisone shots. Even so… he still has not diagnosed me with RA – because I am seronegative on everything… I will write on the next question. They call it “Undifferentiated connective tissue disease”. I have also recently had that “popping” of my joints every day now in my ankles and shoulders. I did not realize this was a symptom. Does this get worse as the disease progresses?
2.RA Inflammation markers
Have you ever had a normal CRP blood test result while you still had RA pain? Do you ever have normal ESR / sed rate result while you still have RA pain?
YES! The only positive marker I have ever had is an ANA. The last one of that was also negative. I have never had an elevated sed rate, crp or anything even while I was in pretty significant pain. I did have my White blood cells bump up. He called it “minor” although I am a nurse and when I see White blood cells over 17K I get very concerned about my patients. Not sure what to think of this…
Has your doctor ever told you anything similar to…? “I don’t understand why you say it hurts because I do not see swelling;” “Perhaps this pain is due to something else because your inflammation is under control;” or “Your joints look good. Your RA is under control. Maybe you need an antidepressant or….”
OH MY GOSH!! I fired my first rheumy because she kept trying to tell me it was depression and that I did not have real pain. Really???? Ugh! My second one fired me because I kept having multiple symptoms. Now the third rheumatologist is much better. I saw him once and he diagnosed me with three separate things – UDCTD, Fibro and bursitis. He did not try and fit me into the little “boxes” of symptomology that the other two had. Too many seem to try and diagnose you with one disease. Even though patient’s with autoimmune disorders of one type often have another. I was relieved. I still have issues with this one at times. He does not believe my immunosuppressive meds – prednisone, methotrexate, plaquenil – could be supressing my lab values and preventing me from showing up positive on them. (especially sed rate). I disagree with this. But he addresses my pain, and works with me. I try and work with him and am compliant with his suggestions. Nurses can make difficult patients but he and I seem to have a good working relationship.
Heather, you are not late. As you can see, folks come back and read these pages for months so you may help someone.
Very funny – you fired one and 1 fired you… 😛 As far as the loud popping, I found it would come into new joints just prior to a painful flare that first year as the RA spread thru my joints. Now, it is sometimes a grinding or clicking, depending but still plenty of popping. It is definitely a symptom – I know some don’t agree. Going from 1 or 2 pops per day to 100-200 is a dramatic change that happened overnight to me.. plus the others who tell me the same…
I have never had any noticeable swelling. One of my rheumatologists (now ex) said “you’re joints look good. I suspect the pain is caused by something else”. His first suggestion was constipation! Ever heard of constipation causing jaw, wrist, ankle pain? (as examples).
My inflammatory markers always appear “low” for RA sufferers so I was told I had ‘mild’ RA. However, I can now only do very minimal avocational tasks, cannot complete vocational tasks and struggle, but can complete self care. Admittedly I am not medicated because I am pregnant and have no idea what I’d be like on medication though I do know it took 25mg cortisone to allow me to be more active (though still considered a minimal but ‘just enough’ dose to me) and Plaquenil was not effective.
I had a negative CCP but my ESR, ANA and RF were all high/postive. Unfortunately not as high as other people with RA.
So why am I in so much pain? Xrays show no signs of RA except maybe in my neck. I wqas diagnosed 14 months ago so maybe alternative imagery will help show me what’s going on?
I definately do NOT have fibro. The pain is in my joints, NOT my muscles. I get the morning stiffness, fatigue and of course pain! My symptoms (besides swelling) match my RA friend’s symptoms and I feel confident that I have RA. One rheumy diagnosed me with mild RA. The other was unconvinced. I am now about to head to another rheumy in the hopes that he will give me the treatment and care I need.
Frances, would you believe you are not the first one to tell me the constipation thing!! Good luck w/ the new rheum doc. It sounds like you are on the right track. We do need better imagery for RA. Some prefer ultrasound, but it’s still hard to get someone who’s good at it, some mri’s or full bone scan. Good luck w/ the baby! :bunny: How much longer?
All my blood test were in normal ranges except my RF factor which was positive when I was diagnosed. It made the diagnosis take longer. My joints went from no symptoms to EVERY JOINT completely locked and not working in less than 6 weeks for me. But my doc (my first doc actually!) always believed me about my pain levels, and my symptoms even if they were not completely present in the office! He was so great. My joints swell sometimes but not always very bad. And my blood test NEVER show it.(My blood tests haven’t changed much actually.) Its never in a pattern, neither are my flares. Its all pretty unpredictable, and the pain level doesn’t seem to have anything to do with the swelling. My joints are typically warm/hot to the touch when they flare, even if they are not swollen. I have never been told mild or severe RA or anything like that. But my doc started “aggressive” treatments right away and they began working faster than so many people I have read. So I would guess that means I am a milder case. So maybe thats why my numbers are like that? But really, what do I know? I just started “having symptoms” a grand total of 6 months and 1 week ago! So I really have NO CLUE about any of this.
Lauren, I’m going to give you a proper reply when I get back from my dr appt. I jsut want you to know that I read your comment. 😀
Hi Lauren, 6 weeks is the shortest time I have heard. I think it was 6 months for me to reach every joint. I’m not sure whether there is an exact definition of “aggressive” (such as exact amount of damage in a certain time period) but RA moving throught the body as fast as that does sound “aggressive.” That is probably why your doc was treating you aggressively.
As far as your numbers go, if your doc thinks you need aggressive treatment, then you probably do. You don’t really need to worry too much about the numbers – your doc can tell by other symptoms what’s going on. And he will probably do x-rays or other scans along the way to look for damage. I have met people with lots of damage and normal numbers and people with high numbers and little damage. You may have responded well to treatment because you were treated “early.” I hope that helps some. Good luck. 😀
well, thats kind of a bummer. Wish I could keep the “aggressive” part of this disease as far away from me as possible. But what a blessing that I caught it so early.
I know you hear it a lot Kelly, but truly THANK YOU for all you do.
The swelling may not be visible but i do agree it is feelable.My right hand is always swollen and i dont have it on both sides all the time.
Michelle, I think I know what you are saying – my fingers are not puffy, but they are tight & hard. Lately the knuckles are blue on top from the blood vessel being pushed up. Some joints hurt like a knife in them and look “fine.” No fair.
Reading all of the responses had me relating to all of you, big time. Most recently, I went to a new doctor for a pre-visit for a colonoscopy. After reading my history and examining my sollen ankles, feet and hands, she asked me if my shoes and jewelry have been growing tighter recently. I answed yes and then the doctor asked if I had been tested fro acromegaly. No, I told her I had RA. She said she understood that but that my jaw was also very large (gee, RA keeps me feeling better and better about myself), but I explained that I had a large jaw already. No, she insisited, I needed to be tested for acromegaly. I left the appointment and got into my car and cried. I just couldn’t stand one more diagnosis or disabling condition. It is now over a month later and I still haven’t had the colonoscopy because I don’t want to go back to yet another insensitive, doctor incapable of listneing to a patient. They have their own ideas and do not get off track by listening to any facts that you share with them. My own internist just smiled when I told him and said he didn’t see the need fot that testing. So, back at the ranch, I still need the test. Just waiting to get over my anger at another doctor.
Thank goodness for this blog. It is easily the best vehicle for hearing that one is not crazy and for all the research you do, Kelly.
Oh Karen. I have been there… sighing with you. I’m glad at least your internist gets it.
I remember the day my internist asked me, when will you find a rheum doc that you can just stay with? since he was puzzled at mulitple referrals. I told him, “I just need to find one who is not looking at me saying, ‘You don’t look sick’.”
I said, “I don’t have time for that baloney to convince a doctor. I just need to be treated. I have a life.” He smiled w/me & it meant he got it. :yes:
Hi, just signed on to your RA warrior. Sadly, I am getting very little support from my medical professionals. As to swelling. I also swelled up in every joint and actually gained close to sixteen pounds in a matter of days. I am a good normal weight, but by the time I saw the RA doctor, he did not take my weight gain seriously. Why? Because I am in my late fifties and well most ladies my age are over weight to some degree. This was so discouraging as I went from 145lbs (I’m 5,8)to almost 164 at the height of swelling and pain. Add to that I am a Type 1 diabetic of 41 years (but again most women my age are type 2 and well over weight) Thank goodness my family doctor had just seen me a few weeks prior to getting this swelling or being diagnosed with RA as she couldn’t believe how different I looked. Obviously I’m not trying to compete with SNL (it cracked me up, by the way.) But being a diabetic who managed to beat the odds and feel healthy has changed. The present meds I take (prednizone, mtx and a sulfa pill) are causing my sugars to go all over the place. After seven months since I’ve been diagnosed, I just had a flare and now am on more prednizone. I’m probably going to be put on biologics eventually and eventually go off the prednizone, but I worry about my over health as I’m not that young. Also, the wear and tear of my diabetes along with now the RA has stopped me from walking, excerzise, etc. Sure hoping I can get back to all of that. Your website is wonderful, by the way.
Di, I’m sorry you are going through so many things & having a hard time with doctors. It’s hard to know but Biologics might be easier on your overall health than long term prednisone if your doctors think you need them. I hope that treatment can bring you relief and you can be able to go walking again!
Just wanted to say Thank You! for this site!! I was diagnosed with RA about a year ago and reading the responses/articles, etc is like reading my own life story! I thought I was going crazy and felt so alone but after finding this site I feel sooo much better and sane! The swelling part really hit home-I have a great deal of pain and stiffness in the morning in my hands but not much swelling and my dr says the exact things I read here(have you tried an antidepressant, i don’t know why you say it hurts-there’s no swelling, etc) Thank you Thank you Thank you!!!!
You’re welcome! You’re Welcome! You’re welcome Briana!! you are not crazy. Hope you can get this doc to listen or go find one who will!!!
I’ve had RA for 16 years. Early on swelling was quite prevalent. Since starting on biologics, currently Orencia and MTX, very little swelling. I still have a significant bouts of pain. My Doc, struggles with understanding why I’m having pain but very little swelling. He calls me the Poster Boy for successful biologic treatments based on lack of swelling and joint damage. He is really puzzled by why I continue to experience pain. I would much rather be the Poster Boy for pain relief!
Bill, obviously, whatever causes the pain (& for me weakness) is not the inflammation itself. There are several components to RA – inflammation & tissue destruction are only 2 of them. They obviously don’t have a handle on exactly what causes pain yet. It is not swelling – I can tell you that. Sometimes, I now have puffy swelling especially around my knees and ankles. They hurt, but not more than my other skinny joints do. Sometimes the ones that look “fine” to an observer feel like they are being ground in a meat grinder. None of my joints look like my own pre- RA joints to me.
I was diagnosed with RA in 1999 with minimal swelling and negative bloodwork other than a slightly elevated sed rate.
I was on Plaquenil for a few years and then had a period
where I felt better and then got lazy and didn’t follow
up with my Rheumy appointments.
Over the past couple of years I have had joint pain and difficulties. Right shoulder bursitis and pain with a subsequent frozen shoulder with so much inflammation
I had a shoulder decompression surgery. (just maybe you
would think that my RA might have something to do with this?)
Then odd PIP joints with mild red swelling that would last a few days and disappear, maybe my RA was trying to tell me it was still there.
Today I am recovering from shoulder surgery, have severely painful knees (both RA and OA), Hands and Feet are very painful with plantar fascitis as well. My morning stiffness is over an hour in length and very often I can barely walk or walk down the stairs.
BUT my swelling is really minimal compared to my quality of life right now…
I am seeing a new rheumy soon I hope…and I do hope he honors my original diagnosis.
Hi Susan. Are you worried that you won’t be treated for RA? Did you have a remission for a while and then it got worse? That does happen. Hopefully you’ll get a good dr!
1. Very little swelling and only once with redness (2010)
2. CRP has always been negative, My sed rate was only mildly elevated although I had a positive ANA in 2010
3. This one is the one that gets me…I have had ALL doctors that look at my joints comment on how little inflammation there is AND I have definitely been looked at suspiciously for
“female anxiety or depression issues” which is a bunch of BS…LOL They are careful how they say it but they do try to poke around wondering if I am depressed or something if they can’t see my joints swollen markedly or massively…
It really ticks me off…LOL
Whoops…I did not know I answered your question before…helps to scroll down…LOL Blush Blush
Susan, no problem. I want to write updated replies of my own also.
I have had RA for 27 years.my onset was alot of swelling in my feet ankles fingers knees & inflammation ,but after i was on meds for a couple of years the swelling left & only come back when i had a flare which was not very often.until now this years i just had a flare last week july 27-29 for the first time in a long time,felt like i was just dx. but the cortizone shot the doc gave me took it all away.so i dunno i think everyone experiences different symptoms with RA,and should not be dx the same.everyone has a individual type of RA. should b treated as a individual.♥rox GOD BLESS U!
My RA first became evident because of swelling in my toes, enough to make them look deformed. Now years later, about 7-8, I still swell all the time. My wrists never go down, my rheumy is amazed at the way I swell all the time.
Carla, I wish they could study us to see why we are so different. Maybe they could find a clue for treatment.
Getting the “but there’s no swelling” remark from the doctor is the most frustrating part of the visit. I had one where I was in a lot of pain but no swelling. Almost had the feeling she was mentally rolling her eyes at me. Next visit, she was going over my labs and said “Oh your inflammatory markers were very high last visit, no wonder you were hurting.” Felt like do a “See I told you so,” but being a lady, I refrained. Still I know when my joints hurt even if the swelling hasn’t started yet.
Carol, I was so relieved when I found out I was not the only one with a doctor rolling eyes or scoffing at my RA. At least you had the labs to vidicate you. Some never have those either. Apparently, science shall one day discover that the RA pain is not “caused” by the swelling or the blood markers… If the patient says it hurts, it hurts. That’s the only solution I can think of… :heart:
Wow, lots of feedback, you asked for it!
1) Often I have much pain w/out swelling. When I am swollen, I am in pain for sure.
2) I’m never told my test results, though when I asked a couple times about severity of disease, and any actual test that can show severity, I was told there’s no one definitive test. But – my SED rate and RA factor level had been normal (or low whatever, meaning I wasn’t very severe).
3) This is the part that gets me more angry than I can say: I have heard most if not all of the comments you mentioned (in one way or another). Once when a dr asked me where I had pain, I answered “everywhere, in every single place in my body”. Her response was, “You don’t have an swelling…” I get so angry about this b/c all I am asking for is acknowledgment and compassion. I accept my condition, I never say why me… all I want is to be believed when I say I am hurting or can’t do something!
I’m going to look over these comments, thank you for doing this research.
Hi Kelly, I hope you realize how much this subject has helped me and obviously others too. I was first told that I had Lupus over 15 years ago. I had raised SED rate but never swelled. I was treated with pred. for most of those years because I couldn’t tolerate any of the meds I tried. I was always driving home in tears because I looked good and we should leave things alone. I went to Boston to a new rhum. who told me it was fibro. Several more rhum. told me I had lupus with fibro.,MCTD,sygryn’s,addison’s, hashimoto,etc. I finally found a rhum. that I like and he ran all the bloodwork and said the lupus was under control from the pred. that it is R.A. and sygryn’s syndrom that was causing my pain. He treats me aggressively, Orencia, now rituxan, as I need to get off pred. because it has played havoc with my body. I do like him very much but he still says to me you look good, because there is no swelling! It makes me feel like I’m going out of my mind, why if he thinks things are good does he continue with meds. I am in pain most everyday, I get flares were it is worse and my ribs hurt and every joint is in pain, but know swelling. I have been at my most painful and the bloodwork will come back low?? It makes me feel crazy.
I am also tired of friends and family telling me what they think I need to do. How it is probably from the stress I am under, how I need to get out more and they are o.k. as long as I can help them out with what they need.
I’ll stop rambling on I just want you and the other people who responded to know that it has made me realize that I am not alone and it is such a relief. Thank you for all the work you do, you have know idea how much good it is doing.
Hi Jeannie, Thanks. I appreciate the kind words. But I’ll say that I was surprised to find out how many there were like me. I thought I was a tiny minority & a couple yrs ago, I was searching for others like me. Now, I know that this is a real problem w/ rheum docs. We’ll have to find a way to fix this.
I know about pain & weakness in every joint with little or no swelling visible outwardly and docs who shake their heads so you aren’t rambling. We have been there too, driving home in tears. :heart:
while you might be a little frantic, I think your voice captures thy frustration so many of us feel.
We are in a world where what you see is NOT what you gwt’
I also have no swelling but have pain and morning stiffness and terrible fatigue my sed rate is always good but my anti-ccp is always high last one was 193 my doc also thinks its under control because theres no swelling but i still feel like crap and have pain everyday i just dont understand it im very frustrated!
It is frustrating Laurie. It has helped me a little to realize that many of us are in that situation. Most patients seem to tell me they feel much worse than the swelling or the blood tests indicate. There is obviously a problem measuring disease activity. A good rheum doc relies more on the patients words about what s/he can do or pain & stiffness.
Yes I have some photos and also a complete list of my bloods since April 2009. I have even graphed my ESR, CRP and ESR so that it can be more evident to him than him wading through all the papers!!
I will post my experience at my last Rheummy’s appt separately but here I would like to thank Patricia – one of your warriors for responding to my FB request (on your FB page) for someone to message me personally if they knew a good Rheummy in my area.
I am following up. This might give you an idea of how my last visit went!! :teeth: :teeth:
Dear Kathryn, I’m glad you made that connection! I’m glad to hear there is progress for you – Yay! The graphs are a brilliant idea. If there are changes in tests, let them SEE it. I think they are mostly wanting to see things in black and white so that may help you if there is anything in the tests to be seen.
1) Swelling – Always
2) RA Blood Markers-Got & stayed normal (?due to prednisone) even though I still have much pain and fatigue, etc.
3) I have a great rheum Dr. He has treated me aggressively based on symptoms; not just blood test results. Starting Actemra soon. Failed Humira and Simponi.
I am currently waiting on another round of blood test to come back. My Sed test came back positive for AR, however, my rheumatologist wants to make sure that she is not missing anything else. NOT swelling at all, just suffering in agony of joint pain and feeling extremely tired. Today is an ok day; that cortisone shot did help me, at least until next Tuesday when I go back to hear something from my doctor. Love this site!
Hey there Gaby. I’m sorry my reply is late – I was offline today. I hope the shot does wonders. I’m glad your doc is checking out everything. There are plenty of RA patients w/out swelling as you can see. Maybe 1 day they will find it is a certain type of RA.
I have lots of joint pain but only have minimal swelling sometimes, but most times no swelling at all, and never while I have an appointment with my rheumy. My bloodwork is always normal, only the WBC and ANA is elevated.
I still wouldn’t have a diagnose if I hadn’t gone to Germany and have a diagnostic wrist arthroscopy done. The surgeon here in Manitoba wasn’t willing to do this and told me my pain came from my mind. The synovia was swollen and floating in the joints, and I am glad that they gave me pictures the had taken during the arthroscopy. So I had “proof” for what is going on in my joints.
My rheumy takes my pain serious but keeps telling me that it is hard for her to decide what to do with me because I just don’t fit in the textbooks. She tried out the tender points for Fibromyalgia but only one at my left knee was painful, and this knee was very sore anyway. She was reluctant to go for another Biological after Humira stopped working after six months. Finally, after four months of waiting and terrible pain she decided to try Remicade. I am waiting now for the approval.
It is frustrating not only to have the joint pain, fatigue, dryness etc. but also to have to fight for medication. I dream that one day something shows up in my blood, I read from people who had this happen after five years.
Some patients have RA for many years with damage that is obvious and have negative blood tests. It’s not necessary to have postive blood tests to be treated. But there are some doctors who are hesitant if there are not positive blood markers. You’re right – it’s frustrating to fight for medication. Since I’ve heard, “I have no obvious swelling with pain” so many times from so many patients that I do not believe it is atypical any more. It seems like they need to know more from us about what RA is like on a daily basis. Are you able to switch doctors if it is not good for you?
I have terrible pain in many of my joints that has come on so quickly. My blood work is negative except a positive ANA. I’m told because I don’t have swelling and my blood work is negative, that I don’t have RA. The Rheumy actually blew me off. I did an 11 hour trip to see him and he did nothing.
Yet the doc has me on a lot of tramadol and naproxin. Oh and the both my GP an the Rheumy that I saw never even took a look at my joints, so how can they tell if I’m swollen or not?
I do have OA that showed up in my hip and lower back. They said it’s really mild. I asked both why I’m in so much pain in so many joints including my hip and back. No answers.
The Rheumy told me maybe it was my epilepsy. I’m like “WHAT?” Not.
Now I’m being sent to a pain clinic. I can only hope that I might get some help or someone to take me seriously there. I can hardly use my arms.
I was also told it was tendinitis, now that story has changed to arthritis but not RA. It’s so frustrating and lonely.
The pain is brutal as I’m sure you know. Thanks so much for this site. I’m tempted to give my doc the link to your site and ask him to read it.
I wish everyone on here the best and I’m sorry that you all struggle too.
I am having so much pain in my hands ,feet,toes, wrists(both sides) and my eyes burn. It takes hours for the stiffness to go away…if it goes away at all! I stay warm all the time. …even with my air on very cool.However, little if any swelling at all. I am scared my Dr is going to thing I am crazy. I can’t do any of the things I love to do because I hurt so bad. I don’t want to leave my house and I don’t know why. I sleep all weekend now and can’t seem to get any relief. Any thoughts?
Tracy, I think if your doctor thinks you are “crazy” for having “little swelling” along with all of your other symptoms, then… you would have to find a better doctor. What you are going through sounds very common with RA.
You need a doctor who will listen to what the symptoms are and treat you. One idea is keep a record of your symptoms – things like how many hours you’re stiff or taking your temperature when you are warm & writing that down or taking photos of any swelling or rashes that do happen. That helps some doctors to realize that patients are telling it right. Good luck.
I now mainly have swelling in my arms, hands, knees, feet and fingers, but for most of my life have had some swelling or another throughout my body. The scariest episode was when my right leg swelled up like someone was trying to amputate it. The swelling was from just above my ankle bone to the base of my knee. I was at work at the time and my boss rushed me to the ER for fear that I would throw a clot or something worse.
Needless to say not once did the ER take blood to see if the problem was anything other than a blood clot. I waited 2 hours for an ultrasound to learn that there was nothing there and the blood flow was great. They recommended that I keep my leg elevated and stay off salt. . .and possibly check with a cardiologist. I wish now that I had taken pictures, which my mom suggested at the time.
That would be scary Tanja. & yeah, I figured out the picture thing late enough to miss some cool shots too. Hopefully you wont get another chance!
Ooops, forgot to post lab results. The following day my family doctor ordered a full blood panel (which I promptly had drawn), and my results showed a high RA factor. Surprisingly my other results were on the low end of the normal ranges. As time has progressed my CRP has risen above normal although my TSH has stayed within the middle of the norm.
Dear Kelly, answering your questions regarding pain and swelling:
My onset was sudden,I woke up with symmetrical pain i every joint from my toe knuckles to my inner ear bones. However, I had no swelling just total incapacity. I couldn’t rise from a chair,raise my arms,and certainly not drive.The first meds I was given were predisone and pacquil.These were being given prior to tests. The tests showed I had something called Rheumatoid Arthritis and it was labeled “severe”. I still had no swelling. Stiffness and fatigue shortly followed.Yes, I was tested while still in pain but the predisone was having some controlling effect.
After TB testing I was placed on Enbrel and it has worked miracles. My pain is slight and infrequent but stiffness and fatigue remain. By far the single greatest life-changing problem is the fatigue. I can work around stiffness but pervasive fatigue has taken away my favorite recreational activities, tennis,boating,fishing,sand bar wading and fly-fishing, attending sports and theatrical events.I go to the gym,bike ride and it takes two to three days to recover.I do not now nor ever had noticiable swelling.I guess before the RA really set in it had been working on my body for I now have two knee replacements and one shoulder replacement. All three joints had been reduced to bone-on-bone and needed replacement.Prior to the replacements I knew something was going on because unlike many sore joints which hurt”when I do this” this pain existed when I was doing nothing,just sitting. Right now I am an Enbrel believer and despite all the ads about other treatments, I’ll stay with it. Actually I’m afraid to get off it.I don’t ever want to experience that pain again. Also it would be nice to get some energy back.I see nothing in sight about that!
Bob, Thank you so much for the post. We are creating such a resource here.
Your case is extremely interesting to me. I have had little swelling; however, my response to Biologics is opposite to yours. The fatigue is reduced, but it has no affect on joint pain or incapacity as you put it. I stay at that point where you were at diagnosis. It is very difficult.
I agree with your plan to stay on the same treatment that is working. It is likely that another treatment or even the same one would not work after a change. Don’t change anything if it’s working.
I swell on and off all the time, lately it has been in my ankles, especially in my left one, but the norm is my hands and knees. My doctor will say “Yes, I see the swelling” and that is it, he just confirmes it, very fustrating.
Susan, I’m glad he got to see some of the swelling, but I’m not sure what he meant by that?
Just catching up after 3 weeks away – I don’t have RA, “just” PMR … swelling???? I sometimes have swollen ankles/feet, puffy fingers and wrists – I NEVER have had a raised ESR or CRP. I have had occasional situations where my feet and lower shin area was so puffed up it felt they would burst, it was horrendous. But I have NO signs of RA in any shape or form that would be acknowledged by a doctor and I respond to low steroid doses. I know several people with PMR whose CRP/PMR doesn’t correlate with the joint/muscle pain either. We too get the “I don’t believe it…” line.
I just have to add an update on my RA swelling or lack thereof saga….I am still only on plaquenil due to the fact I don’t swell enough…that is what it boils down to now…I am in pain…being weaned from steroids, with has caused more pain…only to see how much I swell AND whether I swell in the Hands… I feel like a science experiment waiting to see if I win the blue ribbon diagnosis! Meanwhile I limp, have a handicapped placard, cannot walk for long distances…Photos of swollen joints mean nothing to every rheumy I have ever seen, They want to see it them self…I even have other Physician notes ant Physical Therapy notes that note increased swelling…Photos mean nothing to my Docs…. they have to catch it with their own eyes. I don’t know if they are trying to cover themselves by not believing the patients word or photos…and by not going primarily upon another physicians interpretation of swelling…But then again…the exam this new Rheumy gave me was less than 2 minutes long…just the basics…no frills…So how does one pick up subtle swelling with an exam like that? Something has to change with how RA is diagnosed and evaluated for treatment…
My swelling is minimal but by 5 every afternoon, all my major joints are throbbing along with my heart beat. It is a very weird sensation and while not painful, quite distracting.
Anyone else with throbbing joints?
I have to start by saying that I have not been diagnosed with R.A. I am a military member, who leads an active life. I am 26 years old, and several years ago I began to have joint pain. It started in my right wrist, and has spread throughout most of my joints. Now every time I move one of my joints the crack, and it is painful. I have had very minor swelling, but a lot of pain. It is to the point where I can’t hold a pen to write sometimes. I have seen many doctors, and both MRIs and X-rays have been done along with the blood tests. My MRI showed soft tissue damage and swelling, along with ganglyion cysts and tearing of the cartilage. The X-rays showed joint narrowing and damage. The blood tests were negative. My sister was also negative, but after years of pain, her doctor finally diagnosed her because of the severe damage to her joints and deformation. Recently my swelling has been almost continuous, with mild swelling of my wrist and pinky. That is until two days ago, when I went for a run. While I was running, I felt my hand go numb, but it wasn’t until I was done that I realized why. My entire hand was so swollen I couldn’t close it or even bend my fingers a little bit. My doctor has put me on Celebrex, but still refuses to diagnose me, because the blood tests are negative. I don’t know if any of this can help your research, since I haven’t been diagnosed, but I hope it does.
Of course I cannot diagnose you and neither can anyone else online. But it would be good for you to look at the Do I Have RA page – link is on the menu. Since you have family history and your symptoms are consistent with many who are diagnosed w/ RA, I hope you will keep looking. Sometimes it takes a 2nd or 3rd opinion especially if you have negative blood tests. If you have negative blood tests which many of us do at least sometimes (There are not reliable RA blood tests yet for definitive diagnosis or disease measurement.) I recommend you see the Tag for RA test – there is a list of posts there if you haven’t seen it already. Here’s one that might help – click here.
I’m sorry you are going thru this. I hope you can get an answer soon.
I have been to the doctor several times and I keep walking out with no answers. I am a 25 year old female and I have had constant (mostly mild) joint pain in my elbows, knees, and it feels like my heels for several months..some days it gets better and I hardly notice (plus the advil helps some), but I HAVE noticed that it is always bad in the morning..like i have to hunch and walk with my knees bent and my elbows bent for at least an hour to 2 hours EVERYDAY OF MY LIFE…i can’t sit more than 15 minutes without my knees KILLING me..and to type this right now feels like my elbows are broken. It constantly feels like my joints need to be “popped” if any of that makes sense…My doc tells me that since I don’t have any swelling or my joints aren’t “hot to the touch” then it can’t possibly be RA or any other type of arthritis…I am a little over weight, but I have 3 children and we are a pretty active family so I don’t understand how this stuff could’ve just literally hit me and my doc thinks that it’s just because I’m a little over weight (by 20 pounds maybe)…it doesn’t make sense to me…I sometimes also get heart palpitations and it feels like my breast bone is sore all the time…I am posting this because I want to basically know if I’m just a big baby and I’m crazy and I figured the best place to go would be to the people who actually experience this disease everyday of their lives…so I am going to post my email address in this so IF ANYONE….ANYONE…has any of these symptoms or if they sound like this disease..please email me some information on what tests to DEMAND from my doctor so I can get this figured out ASAP firstname.lastname@example.org
Of course I cannot diagnose RA and no one could online anyway. However, I can tell you that I have all of the symptoms you mention and that it seems ridiculous that they could be caused by 20 pounds of overweight. The comments by that doctor sound medically unsound in my opinion and they are easily disproven. I hope you can get a second opinion.
Also, it might help you to read through the page called Do I Have RA? It is found on the top of the site on the menu. As far as tests go, this link will be helpful. You need to get an anti-CCP test especially. There is no definite test for RA but that is the most accurate indicator. RA inflammation can also sometimes be detected with nuclear bone scans or erosions (damage) can be seen on ultrasounds or MRI’s or xrays. None of them are foolproof. YOu can use the search box on this site to look up some info on ultrasounds – there is a 3 post series.
I had RA pain for over a year before developing any swelling. My PCP pooh-poohed the pain b/c there was no swelling but after 3 mos of no relief with prescription NSAIDs, he reluctantly sent me to a rheumatologist. Initial bloodwork showed normal CRP and sed rate. Only thing abnormal was a positive ANA. And yes, the pain was awful. Felt like my joints had been ground up in a blender! For this reason, and because I was neg on the rheumatoid factor also, doc called it UCTD….but eventually it showed a predilection for RA typical joints in my hand despite being treated with Plaquenil at the time…and then I started swelling. Began in 2 joints, then 4, now up to 5. My rheumy told me that sed rate does not need to be elevated to have RA. She diagnosed it based on the joints affected.
Lora, thank you for the clear description here. I know it helps people to read them.
Greetings, first time on the web site, it’s interesting. Was diagnosed after my bowling shoes didn’t fit,(in May they were fine] in Sept they were not, since I’ve had the same pair for 5 years I thought it was weird. I mentioned it to my orthopod who was treating me for a couple of herniated discs at the time. He asked me how my hands were, I told them they were achy, but as a pediatric ICU RN I frequently gave patients chest PT, clapping on the lung areas to shake mucus enough to be coughed out. He gave me a lab work rx. I procrastinated, a few weeks later, I couldn’t turn the knob on my bedroom door, got a fever, and couldn’t get off the couch because I felt so tired and sick…went and had the blood work done. Two days later I went to the emergency room thinking I had a kidney infection-[not hungry, & with fever,] and have now missed a week of work. Needless to say they drew more labs, and found my other labs and asked me how long have I had RA. Oh pooh. Meds at first Methotrexate and plaquenil,and percocet a couple times a day, after working a 12 hour shift. I didn’t get better, but I did get smarter. Changed all the handles on all the doors, wore mittens outside and gloves as soon as the temps hit 45. Heating pads are my friends! sleep on your back or side NEVER lay on your hands or put them under your head, I haven’t slept through the night since. Now, I’m on humira every week, but 2 months ago I came off the MTX, a few days after Christmas-my hands and feet swelled, talked to my doc, he increased the dose of prednisone, sort of helped but the swelling remains. All patients deserve a good doctor, not every doctor will be compatible with every patient. Do not tolerate a negative, insensitive, old-school MD. Move on, if I say I’m in pain I am. Medicine has changed, we must believe the patient when they sat they are in pain PERIOD. As a patient with RA, you can never sit on the couch and wait to feel better-it will never happen. You must move and then move some more. I work in an inner city trauma unit that is very busy. I lift patients with another nurse all night long, bath them, turn them, and open twist off things, push stretchers, make beds with people in them -and honestly the only thing more painful than working is not working. I think the docs understand what I do b/c of their previous training and believe me. But I started out by keeping a pain journal- kept it brief and took it with me for appt’s. I need to work, I’m divorced and still have kids in college living with me. The kids, do the laundry the floors the yard and my sons can cut peel and core apples for my famous dutch apple crumb. Everybody is going to get something- none of us get out of this alive-this is our challenge, be brave even when you are not. JRA is a huge problem the meds are horrible and the dosing is a problem, I worked peds for 20 years and 2 years in an allergy/rheum office in a children’s hospital, if you need to put energy somewhere put it there. When or if you swell makes no difference. Not everyone has the same childbirth experience, the same signs of a heart attack, back pain,or diabetes why would RA be any different? Find a good doc, in these times of email and etc, make the first visit and follow up however you can if the distance is a problem. Be assertive and kind you’ll find a doc who meshes with you.
Kath, a belated welcome to the site. I’m catching up today. Hope you see this!
I have no real visible swelling in the 4 years I’ve been diagnosed…Also CRP and ESR have always been normal…even with the pain I’ve had, which has been constant since dx in ’07…
Last (fired) rheumy said – you have no swelling, your labs are normal – it’s your fibro…. I’m like WTH????? 2 weeks later I was under the knife by my ortho for my wrist pain – who found it “loaded with dead RA crap” as he put it, and active inflammation – Yeah, right on , rheumy, it’s flippin’ fibro – bye bye see ya ”
I have started with new rheumy and treatment in the past month, someone who believes me when I say – I hurt every day, can’t do this, that, etc… and he takes me seriously….I’m on Orencia now (just had first dose) hoping it will work….
So YES, you CAN have RA and NO VISIBLE SWELLING!!!!
I’m new to your site, only discovering it today. I’m very impressed, and I sure wish I had the time and desire to put all the research up on our website, as you have done with yours. What a fantastic job! Thank you for your efforts.
I hope to get to know you better, and feel I will likely be sending you oodles of my thoughts on RA. I’m quite opinionated.
In regards to swelling, I have nearly always had swelling with my RA. The funny part is that I have significant swelling with no pain or active RA. It appears to me that my body “learns” to be swollen. If I have swelling in a certain area (notably the joints at the base of my middle fingers and both knees) for a significant length of time, I can’t get rid of it. One rheumatologist thought that those areas were active, while another agreed with me that they are inactive and there is a learned swelling.
Great site. Keep up the good work!
Thanks Lori! Please feel free to write me email@example.com. It might not always be quick, but I’d love to chat about some things, too.
What you say about swelling is typical. Many patients say the swelling and pain do not correlate. Swelling w/out pain (or disabilty) is common, but many docs do not seem to know it. That was a first of many clues to me a couple years ago that something needs to change.
I was diagnosed 4 years ago. I’ve rarely had noticable swelling but I’ve had lots of pain and damage to my joints. I’ve just recovered from a month long flare involving, it seemed, every joint in my body, but no swelling. After one day on prednisone I felt like a new person. My rheumatologist is always looking for swelling and always seems a little surprised that she can’t find any even though MRI’s show erosions. My blood tests are also normal. I’ve been on Remicade for 3 years but went off it last September because I thought I didn’t need it anymore, hence the flare in December. I’m starting up again next week.
We all hate being on these meds. Many of us are just chronic progressors despite meds. I’ve found that I continue to have continuing low disease activity on meds and continue to progress despite them. We might seem to be in remission but it’s only due to the meds, and not true remission or really remission at all. I’ve found going off the meds to not be a good thing. It can be much harder to get things under control and the meds don’t work as well after stopping and then restarting them. Consider things hard before deciding to stop medications.
Thank you, Gwen. Your facts here help to paint a more true picture of the RA that different patients live with. Good luck w/ the Remicade treatment.
I have a unique swelling history. For as long as I can remember, the joints on my right hand (my PIP joints) have been swollen. But they didn’t start hurting until I was 16. I saw a rheumatologist but was told it couldn’t be RA because it wasn’t symmetrical. When I was 22, I got pain in both hands, wrist, knees, and feet, and had some swelling in all joints, but only my right hand remained very swollen. Now 6 months later, I’m still in a lot of pain everywhere but only my right fingers are still visibly swollen, although my rheumy tells me my other joints are slightly swollen too. Weird, huh?
Thanks for the input. It helps others to see how RA does present differently in different patients, especially at the beginning.
I forgot to mention- my ESR and CRP are always notmal, and I’m seronegative for RA. I think that’s one of the reasons it took so long to get a diagnosis. Luckily I now have a doctor who knows that there’s more to arthritis than swelling nd sed rates.
I hear this all the time, Kimberly. Glad you have a good doctor now.
I had a feeling and after the first joint swelled up then on its on resolved I started photographing.
I brought my iphone to my Rheumatology appy and togther with my labs and my exam the photos proved very useful in getting a diagnosis even though I did not have as severe swelling the day of the exam.
so now whenver a new joint swells or swelling is severe I take a picture. I think its good for me to journal my disease that way too, not only to prove to the doctors Im not exagerating.
You’re right Laura. I wish I’d learned that sooner. Pictures are so helpful if you have RA that changes. The worst swelling I’ve had was in my feet & I call them “my ever-changing” feet because they look different every day.