Rheumatoid Arthritis Swelling: My Confession
It’s Lent – a good time to confess.
This is new territory for RA Warrior. This post is not like any before. I’m going to ask you some surprising questions. But let’s back up…
Why I’m interested in Rheumatoid Arthritis swelling
About four years ago, my toe joints swelled to twice their normal size. Naïve to RA politics, I did not photograph them. Neither did my podiatrist.
After a few weeks, the swelling subsided. As I detail in my RA Onset Story, RA symptoms methodically spread to every joint in a neat symmetrical fashion. I was systematically disabled. Since then, I live with tremendous pain, stiffness, and disability. However, I never again saw that remarkable swelling I did at the beginning – only minor puffiness.
Over a year ago, I began to research RA swelling because my rheumatology doctor was puzzled and frustrated. Is that funny? Why didn’t the doctor do what I did? Oh well, on with our story.
Some Rheumatoid Arthritis swells and some does not
The fact of Rheumatoid Arthritis swelling is widely accepted. Most doctors say it is essential for active RA. When swelling subsides, they call it “remission.” But, is there any evidence for active RA which swells less often or less obviously? Some.
This article in Arthritis Research and Therapy shows how researchers often separate swelling and tenderness during research. If swelling were mandatory for “joint activity,” then why would tenderness be measured separately?
Writing for About.com, rheumatologist and author Dr. Scott J. Zashin says, “Just as the presentation of rheumatoid arthritis may vary between patients, so can the appearance of the arthritis. Some may present with prolonged morning stiffness and pain in the affected joints, but not have any noticeable swelling. Others may have significant swelling.”
RA swelling messages
When Dr. Google did not give me much help, I peeked at some message boards. Sure enough, there were some RA’ers questioning why they had little RA swelling. Next, I posted open questions about swelling to see if any would reply. I even posted my email address to allow people to privately confide their stories and the names of doctors who treat RA the same even when swelling is minimal.
The replies
Here are excerpts from what was sent to me last year. I have only changed names to protect identities. Donna: “No swelling with my RA.” Karen: “I always had subtle swelling. I can’t really see it.” Mary: “Kelly, I’ve had RA for 30 years. For most of that time I had no swelling… from time to time in isolated joints. I currently have none. I am on Orencia and MTX now.” Ellen: “Seems when it comes to swelling if there isn’t any, they tend to become uninterested. Swelling is not guaranteed with RA. I don’t know when it became a deciding factor. I have virtually no swelling at all.” Judy: “I have RA and don’t have nearly the amount of swelling my older brother does. At times his fingers swell up like sausages. My swelling is usually subtle and occurs primarily in wrists and ankles. I wasn’t even aware of the swelling in my wrists since I didn’t know what to look for until the rheumatologist pointed it out. I don’t think the lack of swelling has changed my treatment, but did delay a diagnosis.”Amy: “I too have no daily visible swelling, even though I have stiffness & pain. The swelling comes here and there, but nothing regular.”
New RA swelling research
This is the new territory. This is the first time I have ever solicited a response from you. You’ve heard my confession. I would like to hear about your experience. Please take a moment to answer specifically.
- RA swelling?
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? - 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? - Doctor’s comments
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….”
Note: Don’t miss the follow up to this post, Rheumatoid Arthritis Swelling, Take Two in honor of the blog’s 2nd birthday!
Related posts:
- Blood Tests for Rheumatoid Arthritis, Part 2
- Where Do You Find Rheumatoid Arthritis Information?
- So Glad Your Rheumatoid Arthritis Is Cured
Note: If you would prefer to answer privately, you may email me at kelly @ rawarrior.com, without the spaces. I cannot promise to reply to every email. I do promise to never use your name or email without your permission.
I have already testified! If you read my RA story on Page Five, “Kay’s story”, I had to find a rheumy who knew what my swelling looked like. Two before her said I didn’t have RA and I didn’t have swelling and my blood tests didn’t show a thing.
She knew as soon as I walked in her exam room.
I’m on enbrel, soon to be Rituxan and all the usual drugs.
HI Kay!! ♥
yes, it is completely dependent upon the training of the dr what they are able to “see”. I’ve seen both kinds of docs too unfortunately.
1.RA swelling?
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? Never all the time! At the end of the day, my feet and hands are swollen, sometimes my ankle. Never when I go to the dr during the day, though.
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? Always normal tests, but SEVERE pain!
3.Doctor’s comments
Has your doctor ever told you anything similar to…? “I don’t understand why you say it hurts because I do not see swelling;” Yes!! This delayed my disgnosis. My diagnosis did not come until he could rule out other things, since I did not present with swelling. After reading your blog (thank you!), I took pictures of the nightly swelling, and carried them with me to the office visit. That convinced him! Now on mtx as the 2nd treatment. Hoping for a better response, since Plaquenil did nothing…
Good luck with the methotrexate.
My right shoulder is currently inflamed. There is no visible swelling. I am in constant pain and there is seldom visible swelling now though there used to be much more swelling and less pain. I stress ‘visible swelling’ because sometimes I feel it. I feel swollen but even I can’t see anything different. I have had a doctor tell me “Your RA is not so bad, I can bring a badly off patient in here and you will see…” Translation; If you can’t see it it isn’t there. I actually felt a bit guilty for telling him what I was experiencing, but then I shook myself up. You are supposed to tell your Dr. what you’re experiencing and they are supposed to take you seriously! Honestly I’m not sure what the blood tests show or are supposed to show. I’ll try to be more vigilant about those questions in future. I have been told that the disease was not so active only to insist on an xray that showed that it was.
thanks, Nicole. I know by my experience that swelling, pain, and other symptoms do not correlate. It seems UNANIMOUS from patients also. But some can ONLY believe that pain or other problems are a result of swelling. Strange.
Kelly,
If I had as much swelling as I do pain I’d look like the Michelan Man! My old rheumy once told me that my tests were all fine and that since I had no swelling he thought that maybe I’d become addicted to pain pills! REALLY?
My name is Rachel and I was diagnosed with RA last October. I am 33 years old. My grandmother dies a painful death of RA and she never experience major swelling. My RA comes in the form on severe pain, all over my body, but I have only had minor swelling since I was diagnosed. I have seen two different Rheumatologists. One seems to recognize that my RA can flare without the swelling being a factor; the second doctor blamed my pain on Fibromyalgia and prescribed Cymbalta. I have a third opinion set up for this coming Monday and am hoping that this doctor tells me my pain is indeed related to RA, as there is not really a treatment for Fibromyalgia beside pain management. I find the whole thing very frustrating.
I started with Methotrexate injections and when the side effects were too much to bare, I switched to Enbrel but am only on my second injection. I am happy to share the feedback I receive from a third doctor next week. Wish me luck!
Rachel
Good luck! The blaming fibro/ FMS thing has been going on for a few years now, but it’s also a doctor-specific thing. Some do that and some don’t – it’s not patient-specific. In other words, we’ve heard from many many patients like you who see that different docs give a different explanation for the symptoms based in part upon their view of swelling. There are some posts here tagged FMS that have interesting comments as well – although there are comments about that all over this site. You can find the FMS list in the Tags list of topics at the upper right of the page – click on the arrow to see the topics.
Funny you should ask. When first diagnosed with RA, my right hand was swollen to 3X it’s normal size (about 6 years ago). I have since suffered many levels of pain and not had swelling since.
Last week had an appt. with my Rhuemy and he seemed puzzled that my sed. rate was normal, yet I had an elevated platelet count. I knew my RA was, in fact, active as the toes on my left foot were screaming at me and the joints in my fingers were aching.
Something you also might find interesting, aside from my hands, my pain is not usually symmetrical. I will get pain in my left knee for 2-3 days and as soon as that subsides, I will have pain in my right knee for 2-3 days. This happens quite often with many of my joints. Nice it takes turns!!
Jill, I actually do consider that to be symmetrical even if they are not inflamed at the same time – it is still both sides affected.
I was diagnosed based on a RF test of 600. PCP had run the test cuz I was having pain in my knee and he wasn’t sure it was Osteo. Turned out it was Osteo. This diagnosis was done in Oct of 2010. I believe that the CRP test and sed rate were normal, but the other one was also high. He sent me on to the Rheumatology CLinic at the Universiey of MI. I never had swelling until later on. ANd then only in my right wrist and only for a couple of days. I still have tenderness in both, and in my knees and a lot in my feet, but no swelling. By the way, the RAD Dr. has been quite aggressive in treating me. I am happy with him.
Hi Kelly,
I have had RA possibly since age 14, well that was my first flare & I believe at that time, I did have swelling, however I was diagnosed with Rheumatic fever & not RA. A heart doctor was consulted who could not rule in or out the Rheumatic fever diagnosis. My illness came & went for many years without much swelling. I have had ALL normal labs except for the CRP either while I am in severe pain or not. Labs don’t change. My internal med doctor sees swelling at times, when I don’t. It seems that I feel swelling more than actually see it. I have been chronically sick since 2004 & wasn’t diagnosed until 2008. Yes I have been told by doctors that because they don’t see swelling, it could NOT be an inflammatory illness. I actually had one doctor tell me that for one, he did not have to believe what another doctor wrote in notes regarding swelling. If he doesn’t see it, it isn’t there, regardless of how high my prednisone dose was at the time( Which would have taken down the swelling) & the best was, he then told me that I had “Regular arthritis, caused by too much cooking & cleaning” & Not an inflammatory anything. I left in tears but laugh about that one now. My favorite , bad doctor story. Unbelievable really. So for me, I do not swell very much, have normal labs, I do creak, hurt etc… all of the time & MRI’S are now showing damage to my tendons, even though they showed relatively normal for a while. It’s a challenge to say the least. Anyway, Thank you for your work in this & the website etc… its a great place for me to re-collect my sanity, in knowing that I am not crazy (Yes I was offered anti=depressants many times)that this is real, it is chronic, painful & causes much damage. Thanks again. Kelly Varner
Kelly,
I am hoping this doesn’t post twice. I cant see where I posted after I wrote. Anyway, my illness started when I was 14 years old & I believe I had swelling then. I was not diagnosed with RA but instead, Rheumatic fever. A heart doctor was consulted but could not rule in or out the Rheumatic fever. From that time on, I had on & off again flares which did involve swelling. I did not seek medical attention though as I assumed it was the Rheumatic fever coming back. I got very sick in 1990, had many labs, which were all normal. It got better after about a year or so, then went back to its on & off again thing. I have been sick now since 2004 & was finally diagnosed with RA in 2008. All my labs are still normal except for the CRP which is up & down. I don’t see much swelling at all & haven’t for a long time, although my internal med doctor does see it on occasion. Yes I have had doctors tell me that because there is no swelling, I must not have an inflammatory illness, one even went so far to tell me that he did not have to believe what another doctor put into records about swelling ” If I don’t see it, it’s not there” He also told me that I had “Regular” arthritis due to , too much cooking & cleaning & NOT an inflammatory illness. WOW! I had been offered anti depressants for my supposed depression & I almost lost my mind, I am sure. Lots to go through to get a diagnosis. My labs are STILL normal, the swelling has not been around, but my MRI’S are showing a lot of tendon damage, although they too had been relatively normal for a while. It’s a battle for sure. Thank you so much for all you have done to try & get answers, educate people & all else that you do. I know that you too are still in chronic pain. Thanks again & sorry if this comes up twice. Kelly Varner
1. for the most part, there is some swelling in at least one knuckle, knee or ankle, however, when my meds are working at an optimum, i have been pretty much symptom – free. so far the longest is 3-4 months. The pattern has changed. In this last flare-up, I have had more simultaneous swellings. Before, they tended to migrate from one to the next with no more than 3 or 4 at a time. This round, I counted 12 major joints at one time. Also I had new places flare up including my neck for 24 hours and my jaw for 48 hours. I do have an ankle that cracks so i wear a “wrap” when i am on my feet a lot. my wrists can be sore after hard use with no sign of swelling and yet they are not “arthritic” or deformed.
2. Yes although I was on medication at the time.
3.They didn’t handle my diagnosed peripheral neuropathy as RA – I am to just live with it or take a whole other category of treatment if the pain or impairment is bad enough. I know it is related since it showed up at exactly the same time as the onset of all of my other symptoms. I have begun Cimzia injections and noticed an immediate lessening of foot neuropathic pain. I can run down steps!!!
4. I would like to add that i am amazed at how absolutely no attention has been put to O.T., P.T., Assists, etc by the Rheumatologist. An example is that I got an application and persued getting a handicapped parking permit. Seems obvious – but this is 3 years into the disease before it actually occured to me to go through with it. the doctor never suggested it or anything else except medications.
Number 4: same here. exactly the same. nothing but prescriptions has ever been offered to me. Not even suggestion of ice or heat or injections.
Hey Kelly,
Thank you so much for all you do!! I was diagosed with ra five years ago, right after my 40th bday and Fibro a year ago. I have an aunt who also has ra,she also was diagnosed at 40. Until early last year I was able to basically “ignore” it but in February I had a MAJOR flare and I couldn’t function for 6 weeks. I never really recovered,I have not been the same since. This has been the hardest thing I have ever gone through. I was SO desperate to find some answers and just find proof that I wasn’t crazy and I found your website, you were a Godsend!! You have encouraged me in so many ways but especially to better educate myself on this horrific disease.
ANYWAY, this has been the first time I have commented on here so here goes… My hands and wrists are the worse. I had an MRI done on my right hand wrist in Aug. and it showed significant deteriation. I have constant pain and on again/off again swelling. I wear a wrist brace most of the time. I had to also stop wearing my wedding ring because it gets so tight and is very uncomfortable to wear. That was a very sad day!! I also have TERRIBLE fatigue and have started having sleep issues that I have never had before. Brain fog is also a big issue. I get horrible swelling and pain in my shoulders because of bursitis. I saw the comments about bra straps and swelling…. So true, bra straps are so painful. Icing my shoulders help, (PT suggestion), but I have also had to have cortisone shots in both shoulders because the pain would get unbearable. My ankles also swell up and are painful if I’m on my feet too long. I am currently on 3 meds for ra, one of those meds I just started in September because pain and swelling were so bad. I have tried many pain meds, but my body doesn’t handle pain meds too well. So my ra dr said I could take 2-4 Aleve a day, as needed. I take at least 2 a day, it only takes the edge off the pain. I have a great rhuemy, but you taught me how to ask her the right questions and get the best results from her. Last month my blood work was the best it has ever been and I had no swelling,so the new meds fixed that, but I still have pain all the time. Sorry this was so long!!
I have had very little swelling throughout my decade of RA. My CRP and sed rates are usually in the normal or not too bad range. I’ve been on mtx (25 mg) for 10 years. I mostly had one staff doc at the VA (disabled vet) and he could detect the slightest swelling and said that was just how my RA manifested itself. He was very good and cared about how I was doing and wanted me to have improvement. When he trained in new docs/PA/interns at the VA he would have them examine me first and then tell him what they found. Not one ever found signs of active RA/swelling. Then he would examine me and explain to them what they missed. Unfortunately when he left I got one of those PA interns. After a year I finally got assigned to another staff VA doc (very hard to get) and she is very knowledgeable, no-nonsense but I feel confident that she is interested in helping me get the most relief and care possible. I’ve only seen her twice so far.
Oh, I forgot to mention that they found my RA from aspirating my knee before giving me a cortisone shot for pain after my whole body got slammed pretty suddenly. When I have had to stop the mtx due to a surgery or infection within 2 months I can’t grip anything, get down to the floor without falling and I have to crawl up on my elbows to get to the couch to crawl my way up off the floor. After being back on mtx for a few months I am back to my “normal” which was a sign that it was RA as well as the joint damage that can be seen on x-ray in my wrists.
I do not have swelling all the time – not anymore at least. It seems like at first the swelling and pain went hand in hand. Now that I am on more intense meds, the visible swelling is less common. I do notice it here and there in random joints though. Since my diagnosis in April 2011 my CRP has ranged between 0.6-1.2 (<0.5 is normal) and my sed rate has ranged 11-20 (all in normal range <21). When I was 1st diagnosed my Dr indicated I was basically swollen from head to toe- obviously my numbers didn't reflect the swelling but the pain was very overwhelming. I think I am very lucky in the way that my Rheum Dr has never once questioned my pain. In fact, at my last appointment, my Dr mentioned that she did not feel any swelling in my joints anymore and was very excited- yet at the same time she up'd my Humira from bi-weekly dosing to weekly. She offered the explanation that the swelling is more just internal now and would be visible by certain imaging procedures but not by her feeling it. Never once did she say it was in my head now or try to tell me that I am in remission when we both know I am not as pain is still present.
Your doctor must be up on current research! That is exactly what has been found in most cases, as shown by MRI or ultrasound studies! (as shown in part 2 of this post)
Thanks for posting, Jen.
I have had RA for 20 years. I have never had any swelling to speak of but have had huge amounts of pain and stiffness. The RA specialist I first saw said that most young RA doctors would not see any signs of RA in me. However I test positive for RA and do have significant polyarthritic pain. Generally people think there is nothing wrong with me and don’t understand when I am fatigued or feel too much pain to go out. It is frustrating at times.
I have next to no external swelling. My joints are never hot and red. A little swelling in ankles and knees on occasion but i always have some level of pain in the majority of my joints. The difference now after 10 years is the visible change in hands and feet due the joints becoming deformed and ligaments becoming lax.
I’ve always been RF- and my SED rate has been normal since starting biologicals.
I’ve been lucky however with my Rheums. I’ve had 3 and they always believe me and do blood work after the office visit, not before. I was even treated aggressively even while I was considered undifferentiated.
I have stiffness and pain everyday..but only have swelling ocasionally.My new rhummy made comment on this on my first visit.felt as thou he felt i was a fake..like why would you!!
My rheumatologist says the swelling in my ankles wouldn’t be coming from my RA. When I responded, I have never had any swelling prior to the RA, she stated she didn’t know what was causing it. The amount of swelling varies but has never gone away since the initial onset last June. I am on MTX injections 1.0 and prednisone 10 mg daily.
I don’t have nor have ever had any visible swelling or have any blood test that reveal RA. My doctor noticed subluxed tendons in my fingers which led her to take hand x-rays. That’s when she noticed the bone loss, joint damage and fluid swell in the joints. She placed me on methotrexate and recently started me on Orencia injections. No swelling still have pain throughout my body. My doctor is great. I have been afraid because of her aggressivness… upon reading your info on this site I am glad she is.
She sounds like a well-educated doc, Debra. I’m sorry you needed a rheum doc, but I’m glad she takes your symptoms seriously. Hopefully, treatment will slow the progression for you!
If you would like to email her name to me, we are working on a list of good docs. Kelly AT rawarrior.com
Amazing. Yes, I have had the same experience, too. I have little swelling, but I am always in pain. For the past two years, I have asked my rheumatologist to put me on ANY drug. He says no, that I am in total and true remission and have no signs of inflammation. When I tell him my knee hurts and feels inflamed and hot, he tells me that he can see none of that.
But yesterday my left foot was in so much pain that I cannot walk on it. I spoke over the phone with another doctor and he told me that it is unacceptable that I have not had an RA factor, CRP or any blood work done in the past two years. He told me if he has an RA patient complain of joint pain, he conducts these tests. So…he ordered up the blood work for me today and he had me go on 20 mg. of prednisone for the next five days to see if I feel significantly better. He said he is prescribing the prednisone not only for its therapeutic qualities, but for its diagnostic qualities as well. He told me if I feel significantly better on the prednisone, I should present that to my rheumatologist so that I can be put on methotrexate.
By the way, here is my history of the disease in a nutshell. Back in 2000, I got a hernia operation. That was when my first flare-up occurred. My RA factor and SED rate were through the roof and I simply could not button my own shirt buttons or raise my leg even a couple of inches to get into the shower. I was sent to a rheumatologist, who prescribed prednisone and methotrexate. I did my own research into the disease and I met with people who had gone into remission. Everybody I talked to and met, including James Coburn (yes, he and I met and spoke about the disease) had all done the same thing. I had met with about 18 individuals and they all went into remission by fasting. I was extremely skeptical at first, but I tried and within 48 hours all my symptoms went away. When I started eating again, however, my pain and symptoms would come back. But the pain got much better the longer I kept up with this long-term, periodic fasting. My rheumatologist said that he was amazed, and he gave me a green light to stay off meds. Then, in 2010, I had another surgery (unrelated to RA) and I got another flare-up. I was prescribed prednisone and methotrexate. I took the methotrexate for about 4 months while I did my fasting again. Sure enough, the fasting worked a second time. My pain, symptoms and blood-work all went to normal. But…this time around, I felt like I had low-level inflammation going on. I tried to convince my doctor to put me on low-dose methotrexate, but he said that that is not necessary. So now we will see what my blood-work says and how the prednisone makes me feel.
I would appreciate any advise or comments you have, and I cannot stress how beneficial long-term, periodic fasting was for me. For legal reasons, I cannot recommend it to you, but there are many medical studies out there (6 of which I have shown my rheumatologist and he told me they were valid studies and that he was amazed at the findings) and they all speak about the benefits of fasting. One study concluded, “long-term, periodic fasting ought to be including in the armamentarium physician’s use against RA”. I stress again that I am stating that this was my experience, and I am not advocating its use for other people. Have you heard of others going into remission by fasting?
I am also surprised at the responses my rheumatologist often expresses when I tell him about my symptoms.
Swelling has been one of the components involved with my RA from the very beginning.. I have had friends actually watch my joints or tissue “grow” to two, three times the normal size.. and even more. Sometimes the swelling involves areas of my body which do not include joints. I am now presenting RA nodules that also often time become inflamed and enlarged… Because it takes so long to get an appointment (6 weeks or more) my doctors have not always witnessed the phenonomen so it is difficult to get extra help. The pain and swelling not still visable by the time I get to see the doctor. Often times the swelling is not localized but general body swelling and I will experience a 5 to 2 10 lb. weight gain usually accompanied by a low grade fever that will last for either a day or two or on occasion as long as a week to 10 days.. When this happens I resort to water pills. When this happens it is virtually impossible to function normally. Standing walking sitting, turning over in bed or even lifting a limb is as difficult as lifting dead weight. The slightest pressure can be unbearable. The fatigue would be almost welcome if blessed sleep would come. Trying to determine the triggers is like trying to solve some cryptic puzzle. I find that between flares up I must live to the maximum and hope I can finish a project or get a vacation completed before the rain, the pressure or the pain returns.
I have ra… i had a positive ana but not ra test??? i have occasional ankle swelling and my toes have swelled like sausages at different times over the years but no swelling anywhere else. my main problems are my hands and ankles and now neck… i just started methotrexate..
Kelly, there is no RA test. Maybe your doctor ordered a rheumatoid factor (Rf) test. This is positive in most people with RA, but not all. There is no test that is a clear thumbs up or down for an RA diagnosis.
It sounds like you have a good dr who is treating you even though some tests are negative and there is not a lot of obvious swelling. Those are barriers to some drs who don’t understand the disease very well. I hope the methotrexate works for you. There is a lot to learn as a person with this diagnosis and you have a good start reading this – one of my favorite pages here. The comments are very informative too.
Thank you for this wonderful site!!!!
I found this post after searching for info on whether it was possible to have an inflammatory arthritis with little swelling and negative blood results. Ive had very minimal swelling, only sausage fingers once, my knee often swells but at the back which they don’t seem to class as proper swelling. Ive been seeing a rheumy for 2 years, they worked on the rx of psoriatic arthritis, Ive tried
Hydroychloroquine, Sulfasalazine and recently Methotrexate.
To cut a long story short, after being on MTX 8 weeks I went back due to severe side effects, expecting them to up the folic acid as I was only on 5mg. Having to see a new rheumy (the department works around the consultant and a number of registrars you never seem to see the same doctor). She sent me home, told me to stop taking the MTX and said that she doesnt think I have a case of inflammatory arthritis at all, and I can go back only when I can present a swollen joint! If not they will see me for a check up in 4 months.
I don’t have to explain to you guys when I say Im sat here now in excruciating pain of multiple joints, yet none look swollen – even though they feel it inside. My joints especially my knee have been warm, the rheumy has seen this, but again it wasn’t proof enough.
So I am really relieved to find Im not alone in this, I am writing an email to the consultant to ask him to review my case and also if he can explain why there is this insistence I present a swollen joint!
I had positive high CPR once – the time I wasn’t on steroids or a DMARD, go figure, but this is not good enough for them. They insist I need constant positive blood work and swollen joints.
In the UK you cannot even qualify for Biologic treatment until you present 3 swollen and 3 tender joints according to the NICE criteria – this also makes me laugh because they obviously recognise the difference between ‘tender’ and ‘swollen’!
It takes them 8 weeks to organise an ultra sound too so chances are if I did have swelling it would have gone down again by the appointment.
If I don’t get anywhere I am going to have to pay private for a 2nd opinion. How I would love a rheumy who would treat my symptoms, not what they want my symptoms to be. As if being sick and trying to hold down a job wasn’t hard enough I feel like I am constantly fighting doctors too.
I forgot to add I also hate the squeeze test, my hands usually hurt so much, the entire hand that I find it difficult to tell which joint is specifically painful. The rheumy never understand this, especially when I have to say can you go slower and can you let go and retry a joint. The look at me like I am messing around and making things up. They twist what you say around so much you end up scared to admit you aren’t sure which joint is hurting or if you can’t tell the difference between them.
A “funny” story – one doc said to me, oh you are here about arthritis, why arent you wearing gloves? All arthritis patients wear gloves because their hands hurt.
When I use my hands a lot the day before my Dr apt they are always swollen, however, when I am ready to have another Actumra infusion I am always in much pain & cannot be very active. This always gives my rheumatologist an inaccurate “no swelling” diagnosis. She told me I wasn’t getting results with Actumra & needed to switch medications. Then she had her baby & went on maternity leave. After the new dr saw me two times & said I had “no swelling” my doc changed her mind & said it must be my Fibromyalgia causing my pain. I’ve had both diseases for 8yrs now & I can tell the difference between joint pain & muscle pain. After I confronted her about the new diagnosis based on two visits with the temp dr she then “Fired” me as a patient. I got a certified letter in the mail because I had been “late to an apt.” I was late-We had several horrible UT snowstorms on my apt day two months in a row & it took me longer than expected to drive 60 miles in the snow. Now I am branded & no other Rheumatologist will see me! I have no other choice than to have a “Family Dr” treat me! Very Upset!
The pain started at 12 year old.I am 44 now. I had the off and on,here and there, months and weeks at a time kind until I was 37 and had just had my son.
There was not a considerable amount of visible soft tissue swelling although the pain and stiffness was very obvious. Days I could not walk or use my shoulders. The fatigue was debilitating.
RA negative, CRP are never “HIGH”, SED rate always within normal range. All typical RA joints hurt within 4 months. The 5 Rheum’s I saw in the next 6 years couldn’t find any answers and 3 of them wouldn’t even try. I was clinically depressed by 2 years into the nightmare and was ready to give up.
I woke one morning 4 years in and noticed that I could not close my right hand properly, IT HAD BEEN SWOLLEN INSIDE THE PIP & MIP joints FOR SO LONG THAT THE TENDONS WERE STRETCHED TO THE POINT THAT THEY WOULDN’T WORK AS THEY SHOULD TO PULL MY FINGERS THE CORRECT WAY. Oddly the twisted fingers were still not enough to get my permanent diagnosis of RA. ,even though there were 2 sets of X-rays of the hands that clearly showed joint space narrowing. Recently I was given an opportunity to see a professor of Rheum at UT Medical Center Houston. Thank God!
He did a proper MRI w/c and without of my hands & wrists, and wow my wrists {that really only hurt a bit in comparison to hips/shoulders/fingers/neck, ect} were eaten up with bone erosion’s. There are tears in both of my hip Lablem’s and erosion’s in my shoulders. All these years of conservative treatment or no treatment at all{“because I didn’t have RA”} has left me disabled.
I so love you for what you’ve started and the things you work so hard for that betters mine and others live’s. Warmly, Naomy Ramsey. HAPPY CHRISTMAS
Thank you Naomy!! Merry Christmas to you too!! I hope we can make it so no one suffers like you have.
Hi,
I’m so fed-up !! I really am. I was diagnosed with severe RA March 2012. RF 41, CCP >500. Significant erosions on ultrasound of hands and feet. My CRP has always been normal 0.04- 1.0. My SED rate has never been elevated. Inflammation has been noted for some joints on rheumatology reports on occasion but the most recent exam showed no active inflammation in any joints with about 18 tender/painful joints. I can barely move most days due to severe muscle weakness, lack of coordination, stiffness in muscles and joints and severe pain in most joints. I am watching my body deteriorate before my eyes: muscle wasting, more difficulty chewing/swallowing, more difficulty breathing. more joint involvement, lack of stamina. My rheumatologist recently added another diagnosis of a muscoskeletal pain disorder. I don’t think there is a separate pain disorder from the RA. I think all of my symptoms are RA and are related to tendon and muscle involvement secondary to the joint involvement. Is that so hard to understand? When I presented to ER once due to side effects of medication, the attending doctor did a joint exam (why I don’t know) and said I had somatization of symptoms due to occult depression-the most ridiculous jargon-laden accusatory label to say it’s-all-in-her-head. I was sweating profusely, had dizziness, diarrhea and it was determined by my rheumy later that I had a reaction to Arava. I wasn’t at ER for a joint count for God’s sake. I am under the care of a psychiatrist here as I’m well aware of the link between RA and depression and have no shame about this possibility. In this country, counseling with psychiatrists are free so many people go that route rather than spending big $$ privately. We monitor depression levels every 2 weeks with a BECK Inventory and we discuss ways to manage the devastation this disease has caused. I have no evidence of a clinical depression that requires medication. This is the most misunderstood disease ever!!! The lack of an all-encompassing medical description of this medical condition is truly astonishing. Guess what? It’s not all in our heads !!!!!!!!!! Guess what else??? Hundreds of us don’t have active inflammation and have chronic pain with chronic stiffness as the number one concerning symptom. Figure it out !!!! I’m so frustrated…. I am SoOOooo frustrated, angry, and sad : (( and I am so thankful people with RA will no longer tolerate having our symptoms misunderstood or minimized. This disease is costing me the ability to be actively involved in my profession, my livelihood, and my ability to function daily. Thank you for letting me rant !! Kelly? Is there something being done to address the lack of clarity and accurate description of the symptoms that are involved in this disease? Are the 311 responses by patients being reviewed with the ACR? Thank you, Kelly, is inadequate to express my deep gratitude for all you do on behalf of people with RA.
I have posted before on this topic, but I find that during my RA treatment, the swelling issue comes up time after time….I have many joints affected by RA and they painfully flare…and if there is no visible swelling my pain is totally dismissed or is blamed on Fibromyalgia. I recently was diagnosed with sacroiliac joint dysfunction and inflammation by my PCP, as of today I find it difficult to walk without a walker and pain medication around the clock……my rheum of course (and she is the best rheum care I have found in the area) STILL blames it on fibro and told me that RA does not affect the Sacroiliac Joints when all the literature says otherwise! I am amazed that time after time, my RA symptoms get ignored and dismissed if the joint is not red or visibly swollen….so very frustrating…rheum care has to change…thank you Kelly for all you do! Hopefully I, in the meantime will not need a daily wheelchair…and I am not exaggerating, it could come to that….
It’s just a mis-understanding of the disease process itself – one of several we’ve discovered over the past few years. We see swelling with no damage, damage with no swelling and often no correlation between swelling and pain.
Anyway, I’m so sorry you’re not doing better Susan. I hope the SI’s calm down soon. It is awful – happened to me in 2011 at ACR – and I could not walk at all. It’s horrible.
That’s sad because I know how much you like the NP. That FMS non-sense is just based on the fact that they were taught they have to “see” swelling – although no two seem to agree on what is “swollen” enough either… FMS is the catch-all now for “not-swollen,” but painful.
We’ve published the studies showing that serious inflammation exists when “visible” swelling does not – I am not sure what it will take, but we will get the rest of the docs educated on this.
Hi there. If it is easy for you to do (we likely only have a vague idea of how hard you work on our behalf), can you please re-post the links to research articles you’re referring to on this topic of swelling and disease activity? I’d also be interested in seeing if any research centers are investigating the following research questions or if you know of any published studies that investigate the following research questions:
1. What is the relationship between visible joint swelling and the functional ability of study participants with a diagnosis of rheumatoid arthritis?
2. What is the relationship between the presence of visible joint swelling and the presence of joint erosions in study participants with a diagnosis of rheumatoid arthritis over time (1 year, 5 years, 10 years)? My hypothesis is that there is a very poor correlation between joint swelling and erosions or disability based on the very valuable feedback on this thread.
3. What is the relationship between visible joint swelling and the level of pain and stiffness reported by study participants over time (1 year, 5 years, 10 years) among patients with a diagnosis of rheumatoid arthritis?
4. What is the relationship among the variables (pain, stiffness, joint swelling) among study participants and disability due to rheumatoid disease?
Thanks Kelly. These are just some questions I wonder about : )
RPF has recently published our findings on this from our 2011 survey. I’m not aware of anyone else studying the relationship between external swelling and damage or to pain. However the other swelling post here links to a well-known study showing that inflammation (synovitis and bone edema, in this case) exists while subjectively doctors do not detect external swelling – what I call “conspicuous swelling” – my term. There are other studies coming along periodically that confirm that damage proceeds of various types – to tendons, hard, or soft tissue, in the absence of “conspicuous swelling.”
Sorry to be brief Helen. So far behind tonight.
This is only one of the serious misunderstandings about this disease by most clinicians, but it does seem to be a central one doesn’t it?
I’ve taken to saying it this way:
I thought I was alone.
Then I realized I was not alone. (Around the time I published this first swelling post.)
Then I became certain that I was not even in a minority. (After this post and thousands of other contacts with patients over the issue of swelling.)
Make sure you read Part 2, where the research shows in that inflammation exists when “conspicuous swelling” is fickle (not obvious during a doctor’s appointment). https://www.rawarrior.com/rheumatoid-arthritis-swelling-take-two/
I have been ill for 7 years with no diagnoses. Recently I was diagnosed with the beginning of OA. Doctor says that it doesn’t explain the past 7 years so he thinks I have a second issue going on. I had rheumatoid nodules removed from my feet when I was 15 in 1974 (I do not have those records its been too long they don’t have them anymore) In my early twenties I had on and off again pain in fingers but it went away. I had lung calapses and pleurisy problems in my twenties that doctors could not explain why. that all went away. in 2005 my two fingers turned black, hands were in pain then it left my hands and within three months I had pain in all muscles I was falling down a lot and dropping things and I had memory loss, problems processing information.. The falling etc. stopped. Three years ago. I started having swelling in my ankles a lot but I haven’t had that in a long time. I have acid reflux now. Everything I have had since I was 15 is the same symptoms as RA but RA does not show up in any blood test. The pain is severe. I have seen Rheumatologist, Vascular surgeons, neurologist, you name it I’ve seen them. But now that I have physical signs of the OA and this new Rheumatologist is looking further I hope I finally get some more answers but all the pain management doctor wants to do is lower my pain medications. I went through extensive testing from a psychologist and I do not suffer from any mental disorders. apparently I am one of few who don’t with having chronic pain. I have a great outlook on life and I think that is why…. Wish me luck!!
Dear Charla, there is no blood test yet to identify whether a person has RA / Rheumatoid disease. Blood tests are only part of the picture. I hope you get an accurate diagnosis so you can get the right treatment. Here is some information that might help https://www.rawarrior.com/do-i-have-rheumatoid-arthritis/
I have had significant pain in fingers, wrists, toes and ankles and have had a normal crp for past 18 months. My rheumy tends to not take pain seriously. Very frustrated. No swelling either.
I’m sorry Carolyn. I know that can be so frustrating. Would you be able to get another opinion from a different doctor? There are some doctors who don’t focus on conspicuous swelling as the most important symptom.
Kelly,
I’m 30 years old– just diagnosed in October. I’m SO happy to have found this website!
I have joint/tendon pain in my left hip, left knee, sacro joints, and the bottom of my left metatarsal in my left foot. I have a little pain in my right side; most of my pain is asymmetrical. I have NO SWELLING!! I have a little inflammation (by little I mean I’m the only one who notices it) in my left foot but not swelling anywhere close to what I’ve read about with “typical RA.” All the other painful joints that hurt (hurt much worse than my foot!!) have zero swelling whatsoever.
I actually saw a Dr at Hospital for Special Surgery in NY recently who is on to the “no swelling” and RA concept. He said some of his patients have had no swelling AND no pain for years, thus were never diagnosed, and have severe joint damage as a result of not being treated. He called this the more sadistic type of RA— RA with no physical symptoms, but intense damage being done. When I mentioned my lack of swelling he didn’t bat an eyelash and said, “it really doesn’t matter; you still have RA and we have to treat it aggressively.”
Another Rheumy I saw said, “Sometimes I can tell its RA just be looking at someone (for swelling) but others are just more atypical—which is harder to diagnose and treat, but I’m seeing it more and more.”
Btw–I have a negative RF, normal SED rate. The only high blood level is a 135 CCP.
Anywho– I thought this might be of interest– I think more and more Dr’s are learning RA that doesn’t match their textbook definitions (or maybe I just lucked out and found excellent rheumies?!)
I was told I’m certainly very atypical for RA, but Im starting to realize maybe I’m not?!?
Thanks again for this site/post— it makes me feel like I’m not alone!!
-Hanna
PS– after all the info you’ve gathered on this site, I think you should write a book!!
I have had RA for 13 years, mine is very strong and is present all the time, sometimes low a lot of time high. I have just experienced huge swellings in my lower leg, below the knee, not in a joint but the whole lower leg including the foot. It looks huge, but very little pain. It lasts more than a week then finally goes away. This is the second time it happened, the first it was in both lower legs and lasted 2 weeks. Why it is not in a joint I have no idea, but I did take photos of both legs and feet, one normal and one huge…….john
Hi. My name is Denice and I am 44 yrs. old. I have had RA for 20 yrs. I could probably write a book to you all on this post but will try to keep it somewhat to the most important facts. I cant get over how much my story is so similar to everyone on this site. For the first 10yrs of RA, I had an incredible RA doc at Mayo clinic. She understood that swelling is not the only indicator of active RA. I probably weighed 100 lbs at the time. NO SWELLING!! I had a synovectomy and my “non swelling ” wrist was full of synovitus which eneded up in a 6 hr surgery. She has yet to be only dr who understands no swelling does not equate remission. Unlucky me my insurance dropped Mayo, forced me to find new dr. Went through 3 nightmare docs til found one I’m with now. Although he is ok (yet not even close to Mayo) I’m going through same way of thinking…..no swelling =remission. One example of this is the following. I had my left wrist fused many years ago. My little tiny right wrist was killing me for a year. I told my doc and he said there was nothing he could do because of no swelling. I asked for an xray. When it came back his answer was “oh, sorry dear, your wrist has already fused itself so you need surgery right away. That was May 2012. Not only have I been on every biologic med since they became available, they just put me on Acterma. Since my surgery, have been to ER for cast being too tight causing blood clots, a pleural effusion, pleurisy, corneal melt, inflammed esophagus, infected toe nail removed (at drs office), and now suffering from pneumonia. I hate to sound like a hypochondriac but I know my body and am sure all of this is due to my RA. I am so very lucky to have a husband of 16 yrs that has yet to complain and great support of family and friends. I wrote all of this because I feel we all need to stick together and support each other until they find a cure for this horrible and painful disease. Thanks for listening! Denice
I have been undiagnosed for 7 1/2 years now. IT began with 2 fingers turning black. Both hands numbness and I would peel large pieces of skin off both hands every morning for about a month. After less then 2 months pain left my hands and moved up both arms then pain started on both legs just above the ankles and went up to top of legs. Then the pain moved up my back and to my shoulders. This all happened from July to January. In January I had pain all over my body I started falling down and dropping things numbness and extreme pins and needles all over body. I started having short term memory loss and some confusion problems and muscle weakness. I have been tested for Lyme, MS, parkinsons, RA, Lupus. You name it I’ve been tested for it. My Mom was told by my doctor when I was 15 years old,(now I’m 53)that I had RA. However, a second doctor said I did not and removed nodules from my foot and the pathology report said they were Rheumatoid nodules and they should have never been removed. Its been too long ago and records are long gone. I was just diagnosed with osteoarthritis of the hands and beginning in one of my feet. In my early 20’s I have both lungs collapse 5 times doctors had no ideal why this happened I have stomach problems. Since in my teens I have had many things that can go along with RA. I have no swelling and my current Rheumatologist says he thinks I am headed for an auto immune but I don’t have the 4 markers or symptoms out of 7. So I am still without a diagnoses. Does anyone have any suggestions?
Char, I feel your pain. I was diagnosed about a year ago with Ra, then labs were done, my Rhuemy was treating me with MTX, Prednisone, and finally CIMZIA. then the labs said I didn’t have RA, or Sclerederma that she suspected. I stayed on treatment, it was helping all symptoms. More labs, now she says I have connective tissue disease, including suspect RA. She says I have strange lab results, treatment was continued, minus the prednisone. I felt so much better. Now things have changed, my Kidney function dropped to 30, oops. Stopped all meds. I have a horrible cold, 20 days now. My joints are starting to swell again and hurt. Diagnosis???? maybe we are all crazy, or maybe our bodies are telling us we have a problem, even without the correct “MARKERS” I am so tired of it all, I hope you get some good results.
Hello, about 2 months ago I began waking with minor stiffness in the middle knuckles of my hands. Since that time my right hand has gotten no worse and some days seems completely better. My left hand went one finger at a time, with increasing stiffness and stuckness, in order from pointer to pinkie. All of my knuckles on the left hand are tender but the center ones are impossible to bend when I first wake. Used to be able to force the pointer bent with my other hand but now it brings excruciating pain. It takes about 20 min and usually warm water helps ease things. The mild stiffness and soreness last an hour or more once I can bend my fingers. Severity is in order of onset of affected fingers. I’ve begun noticing wrist weakness during the day – both wrists. Like holding my coffee cup or opening jars -but then I hand tilled a garden patch and did just fine. But then my left hand is worse this morning – the gardening ?
My doctor ran labs when I asked. Sojourn’s markers were negative, a slightly increased sed rate but within normal limits, a basic chemistry panel was fine. In the end due to symptoms he called it “arthritis”. I’m not sure what that means ? Osteo? Rheumatoid ? I’m taking Green Lipped Muscle Extract. Should I go to a Rheumatologist ? Does anyone identify with my symptoms ? (I do wonder why when Doctors are perplexed as mine was some they don’t research but mine actually does do constant reading and research and that is why I like him.)
I have had minor swelling in a few joints, but very high crp count , the pain is incredible. my sister has fingers like sausages from ra and she has less pain in her hands that I do. I think each case is individual and that swelling has no bearing on how a person feels. my doctor is very good and has told me that the swelling does not always correspond with the amount of inflammation.
I know this is an old post but I was just googling “RA and swelling” and was so thrilled to read this! I also test negative for everything (including the RA tests themselves) but was quite textbook when I first developed symptoms in my very first flare and it took awhile to get all the swelling down. Since we got my swelling to go down and I have settled in on my Methotrexate therapy I have had relatively no swelling (or so minimal it isn’t very visible) and my blood results always show normal everything. BUT I still have quite a bit of pain in my hands and shoulders especially in the last few days before I have to take the Metho again. I recently moved and as such had to find a new doctor (which could be a blessing) so I’m not sure how she is going to really treat it yet. My old doctor actually said to me “Well to be honest the swelling is what causes damage so we don’t really care about the pain if there is no swelling.” I was devastated. How could this possibly not be related to the RA and how can it be normal that I accept that at 27 years old I just have to deal with the pain and it doesn’t count because I’m not swelling? He then of course said well maybe you have fibromyalga and you should take anti depressants. I told him no the pain is in my joints not my muscles and feels exactly as it did when I was swollen and in a flare that showed swelling (stiffness and all).
It’s very frustrating. I’ve been in pain and my new doctor just called me in some prednisone to see if that helps and then can point us to whether or not it’s the RA. She does seem open to trying some other meds though because she says the fact that my pain gets worse as the Metho wears off is a sign it’s the RA. I don’t think the prednisone is going to work right now because I’m not swollen but at least she’s open to other options. My old doctor made me feel so terrible!!
Sorry so long and 3 years after the fact but I just had to comment 🙂 Thanks!
Dear Crystal,
We’ve heard stories like yours hundreds of times since I wrote this post. I’m sorry your doctor made you feel terrible & I hope the new one is more reasonable.
If it were possible to read through the 25,000 comments on this site, you’d see a common theme of docs telling patients those things & I hope it helps to know that. If the swelling goes down, or is likely there but subtly, the doctor says the disease is controlled (or gone) & the pain is due to a pain processing issue (fibromyalgia, or another similar syndrome), even though there is not evidence that’s the case (pain is in joints, joints are stiff, blood tests, or whatever). Patients are offered anti-depressants or lyrica & sent on there way. Or worse, accused of faking to get drugs.
There is a part 2 to this post that you might find interesting. There was a study done in 2006 that shows there is still inflammation/swelling inside of the bone or soft tissue, even when it’s not very obvious on the outside. https://www.rawarrior.com/rheumatoid-arthritis-swelling-take-two/
And as you can see, this post is still read & discussed, so don’t worry it’s a few years old.
Hi Kelly- Thank you so much for your compassion and your blog.
1. Upon my severe onset, I didn’t have noticeable swelling. I looked pretty normal though I could not wash, dress, or walk without my husband’s help. My feet have hurt most of my life (since I was a young kid my toes/heels felt broken off and on) and then my thumbs suddenly locked up in agony last year. I waited to go to the doctor thinking I was crazy and that I slept wrong because my thumbs looked completely normal. When the pain spread I made an urgent appointment. Over a year after my severe onset, and years of unexplained pain and I still look normal. Occasionally I have puffiness in my hands and feet but, it’s not easy to see. My wrists, ankles, knees, and hips are often the worst joints but, I have never been able to see swelling. My rheumatologist claimed to be able to feel swelling a few times which made me feel confident in him because I couldn’t see or feel it and it’s my body! But there was always a part of me who questioned if he was just guessing there was inflammation based on what I said.
2. My inflammation levels in my blood work came back normal. My RA factor a couple points above normal which my primary care doctor said that along with my symptoms it indicated I had RA. Upon seeing my rheumatologist he said my inflammation levels were normal and my RA factor levels were not elevated enough and he ordered the anti-CCP test for confirmation. The anti-CCP test came back sky high and I was diagnosed with “a severe form of RA.”
3. After a year and four months on methotrexate and about 10 months on Humira I made an appointment and recently saw my doctor because I had a rough 2 month period and was concerned my medications were no longer working as they should. My rheum doc told me in the beginning to always communicate with him because he said my pain levels were most important to watch because pain indicates damage is occurring. I had severe ribcage pain for those two months and I thought I was being a good patient in telling him I had worsening symptoms and high pain. Upon seeing him he felt my fingers- as he always does- and told me my joints felt great/no inflammation and that the medication was doing its job perfectly. He also said the ribs are rarely effected in RA and it could be something else. He then told me it was time to start thinking that something else may be going on. He prescribed me Gabapentin and told me to try it and if it works then I have fribromyalgia too. He spent less than 10 minutes with me and didn’t listen. I left angry an confused. He didn’t do a tender point test or give me any reason that I could have FMS. I never picked up the Gabapentin and will be seeing another rheumatologist. My fingers are not my worst and feel the same as they always have- no swelling. I feel my rheumatologist turned into a different doctor all of a sudden. I have been devastated. If I have FMS-fine- but his diagnosis method seems lazy and irresponsible. I have an HMO and only have one other rheumatologist in my network… I’m feeling super concerned. 🙁
Hi. After reading each story it was a relief to know Im not alone thinking I’m going crazy for feeling such excruciating pain all over my body. Today I was in so much pain just to stand up on my feet. I have noticed this past 2 years my strength has deteriorated and simple chores have become daily challenges. I began getting pin needle feeling on my legs while I slept causing me to wake up several times thru the night. It then started happening to my hands and arms. I even changed beds 4 times. I finally went to the dr because it worsened and began happening during the day that I thought I was having a heart attack. Its been 3 weeks she placed me on Gabapentin. I finall can sleep a bit better at night but the daytime is my fear. I dont know what pains I will have and that depends on how much I can get done. I used to be so busy always working and school and had a social life. Now its even hard work to fix my hair, put on makeup or even shave. Lately I just cry from frustration I cant do things like before. I’m 34 yrs old with a 4 yr old. I was never diagnosed with RA but during my pregnancy with him I suffered all symptoms of it. Just last week my right ankle was so swollen I couldnt walk. Many days getting out of bed feels like I was in a car accident. I now have short term memory loss. I sometimes say the wrong thing knowing in my mind what something is. I have recently almost fallen on numerous occasions from suddenly being off balance. The dr mentioned putting me on antidepressants but going thru all this pain is whats causing my depression. I am scared of the continuous test she says will be done but I know something is seriously wrong with my body.Yesterday my right arm felt so heavy and ached as if it kept falling asleep. I also notice I drop things that seem I’m holding on to then suddenly without reason slips thru my fingers. I seem to be in bad moods all the time but Im in pain all the time. This medicine is helping but I dont want to cover up my condition. I want to prevent and heal from it.
I have zero negative RA. Most of the time I have lots of pain but almost no swelling. It’s frustrating when you go to your rheumatologist in pain but no swelling. I sometimes feel that it must be all in my head. I’m very happy to read that it is not just me. Thank you for doing this research. I hope to read about the results soon
I only ever had visible swelling with the first ever flare of rheumatoid arthritis that I had. My GP ( I live in Wales) referred me after my second bout of joint pain and after a wait to see a specialist I was diagnosed within a year after blood tests and an examination by my excellent rheumatologist who wasn’t fazed at all by the lack of swelling in my joints.
My joints hurt without swelling all of the time – that first swelling was the only one I have been able to notice within the 2 years of having the disease. I have pain in my fingers, wrists, elbows, shoulders, hips, knees, angles and, toes. I suppose I am lucky that the pain varies so I am sometimes in minimal pain but often in terrible pain all over. I am hyper mobile in many joints so examinations show that I am very mobile even when, for me, I am stiff e.g. My thumbs used to be able to bend back to touch my forearms whereas now, they do not!
My blood tests have always shown CRP and RF markers but a recent MRI of my left hip which particularly plays up has shown fluid but no erosion- yay!
I have been lucky in that my GP and rheumatologist have been particularly knowledgeable and able to see past my lack of swelling and stiffness and instead at the symmetrical pattern of the pain that I have in my joints, the blood results and my other symptoms and come to a diagnosis of rheumatoid arthritis and treat me accordingly. My rheumatologist informed me that I probably do have swelling in my joints that can not be seen via the naked eye or x-ray and she suggested that the swelling I have would be seen under ultrasound conditions.
1.RA swelling?
During the major flares, I have swelling all the time, but when I am just having sporadic little flares the swelling comes and goes. I have seronegative RA and negative inflammatory markers and have to take photos to prove to my rheumatologist that my RA is still active. My joints creak and hurt all the time without much swelling.
2.RA Inflammation markers
Absolutely! My CRP, ESR, and sed rate have always been normal even when there is lots of evidence that everything is inflamed! I had to have a bone scan and x-rays to get an RA diagnosis.
3.Doctor’s comments
Yes, all the time. He says it’s muscle contractions due to stress. I keep having to beg for a better DMARD than Plaquenil. Still trying to get put on MTX even though my disease is still very active. He says he sees no evidence of active RA. Again, I have to show him photos of swelling.
Thank the Lord I found this post today. My rheumotologist told me today that, since I didn’t have any swelling in my joints, I was in “remission.” I did not have to make a follow-up appointment. I asked him, “So why do I still have pain in my hands and knees and feet?” “That’s just normal pain from getting older.”
I was so upset when I left. I thought I was crazy, that it was all in my head, the symptoms I was feeling – the overwhelming fatigue and stiffness. How could I be in remission if I was still feeling that way? Thank goodness for RA Warrior.
Kelly May I ask the following?
May I ask if anyone out there is at the point of needing a wheelchair or zimmer frame for mobility?
I have used both for several years now due to joint / muscle pain and weakness.
I just wondered if anyone out there has the same experience?
On GOOD days I walk slowly, like a robot, due to the pain in my back and legs but on the bad days when ALL my joints / muscles / tendons are screaming, it is an effort to get around in my chair.
Love and best wishes to all
Trish
I have had RA since 2006. First symptom was my left hand swelling to the point of not being able to discern my knuckles or the tendons on the back of my hand. I was on vacation at the time and had done virtually nothing with my hands outside of the daily ADL’s. Long story short, I am now on Enbrel. This seems to keep my symptoms manageable. I have swelling currently in both knees and really loud crepitus when going up an down the stairs in my home. My knees creek and pop as do my feet, ankles, wrist, shoulders. Most of my pain is in my hands and feet, but the knees have become affected now. I also have chest pain and a bony prominence on my right collarbone closest to my neck. The doc says I have costochondritis in my chest. He says I have chondromalacia patella in my knees (I say it is all my RA………..)I used to jog a few miles a week, now I have to wear knee support to walk the dog. This site has been very helpful to me as I have been depressed quite often lately. The best thing to boost my mood is vigorous exercise, but I have to take 1/2 a Vicodin to be able to do that. Thanks for listening and understanding.
Thank you, Kelly, for your post and questions.
I don’t currently have swelling, but I do have pain and stiffness. I’ve been on Methotrexate for 18 months and then in December started having acute flares of stomatitis due to the medicine. The stomatitis lessened a lot in severity, but has persisted and the Methotrexate wasn’t controlling the pain as it had been. My doctor switched me to Leflunomide and it plunged me into a fatigue that barely allowed me to function and take care of my small children. Today I saw a new doctor who told me that I did not have swelling, it did not sound like I had active RA (of course, not RD) and prescribed Plaquenil because the RA is not bad (or not RA anymore?).
His disregard for my pain has made me question if I’m going crazy. Or am I making it up? Am I dramatizing pain if I do have it? Thank you for your post that acknowledges you can indeed have pain without swelling.
I am newly RA diagnosed, and the non-specific swelling indicated in my initial bloodwork has resolved. I never had visible swelling at all. I still feel joint tenderness and discomfort in my feet, hips, and hands to the point it limits my activity. My Rheumatologist said he was confused by my verbal account and the discrepency in my blood results. He quickly jumped to the conclusion that I have fibromyalgia but then retracted after conducting a physical assessment that was not consistent with fibromyalgia and I refuted half of the symptoms he stated for fibromyalgia.
Hi everyone. I just found this website and after about an hour of the tears flowing from reading other’s stories, and getting that validation that I so desperately needed, I am so truly thankful. I went online looking for any information I could find on lack of visible swelling but still having active Rheumatoid and I found this website!! Thank you, thank you!
I will try to keep this short before answering the questions regarding this post. I am 48 year old female and have had RA since I was 29. My RA has been fairly aggressive and since 2000 I have been on social security disability and had to quit working as an RN. I actually use to work for my current rheumatologist as his office nurse/RN. Funny how things turn out in life. My right hand and wrist is almost completely unusable. I had a wrist replacement done about 5 years ago, right thumb fused due to severe subluxation and multiple tendons have been repaired due to rupture. I currently cannot grab anything unless it is large enough for my hand to fit around. Anything smaller than that and I could be an hour trying to pick up a pill that I dropped on the floor. My left wrist is heading in the same direction.
In regards to question 1)RA swelling? 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?
Yesterday my rheumy Dr “It Remains to be Seen” told me that due to visible lack of swelling in my joints, my RA MUST NOT be active. Even though I have had RA for nearly 20 years and I know my body way better than anyone else. I feel like I have the flu, sometimes I can barely make it out of bed to just even get to the couch, multiple joints are hurting. But I DO NOT have a fever, never have in fact since I was diagnosed. And he could not see or palpate any swelling. Yet my left wrist is extremely painful to move and has been slowly getting worse. He will not xray it because he says the pain I am feeling in that wrist is due to the previous damage and there is no need to re xray.
I came home so discouraged and started researching if it was possible to have active RA and current damage going on without visible swelling and I found this website. I actually found other sites that documented that this is possible. I also remember my hand surgeon telling me that even though he did not see any swelling on my right wrist before he operated on it he KNEW that there was current inflammation inside the joint. He did xray it and turned out I was actually missing some of the smaller bones in the joints space. They had simply been eroded away. So sad that my rheumy would not listen to me over the past few years and waited so long to send me somewhere to get it evaluated. Could have possible avoided me having to have a wrist replacement.
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?
During my 19 years of RA, the one and only time that I had an elevated CRP and sed rate was early on in my disease and it was when I had completely been taken off of prednisone. That was it. Those labs have been totally normal since then. And I have pretty severe deformities in my hands, wrists and feet with multiple surgeries. I have RA pain every day, all day. As I am sure most of you do as well.
Doctor’s comments
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….”
Well, that is why my rheumy is called Dr It Remains to be Seen. Because he ALWAYS sees that my RA looks great, I don’t see any swelling. Your joints look great. You should be so grateful compared to some of the little old ladies I treat. I feel like saying well crap, they are elderly patients who were not treated aggressively back in the day that they did not have access to the meds we do now. I am 48 for pete sake’s. I should not have this much damage at my age! Sorry, I am really cranky tonight.
So sorry this was such a long rant. I wanted to answer all 3 questions since they all currently something I am dealing with. I have been begging my rheumy to switch me back on Orencia IV because I do not feel that the Actemra IV is working effectively. But based on lack of swelling, forget it. He won’t even consider it. So, I am now searching for a second opinion and also looking for a hand and wrist surgeon that has experience with wrist replacements.
If anyone knows of a multi specialty clinic that I could research that has both Rheumatologists and Orthopedic Hand and Wrist surgeons that perform wrist arthroplasty, I would truly appreciate any info. At 48 years old, I do not want to give up on the use of both of my hands. I have too much of life I want to live and enjoy. My first grandchild will be born in August and with my current situation, I am not going to be able to help my precious daughter change a diaper or even pick up my granddaughter. I need help!! Anyone??
Thanks to all for taking the time to listen to rant and rave. Sometimes it just feels good and I know that the people reading this will know what I am going through.
Hi everyone. I just found this website and after about an hour of the tears flowing from reading other’s stories, and getting that validation that I so desperately needed, I am so truly thankful. I went online looking for any information I could find on lack of visible swelling but still having active Rheumatoid and I found this website!! Thank you, thank you!
I will try to keep this short before answering the questions regarding this post. I am 48 year old female and have had RA since I was 29. My RA has been fairly aggressive and since 2000 I have been on social security disability and had to quit working as an RN. I actually use to work for my current rheumatologist as his office nurse/RN. Funny how things turn out in life. My right hand and wrist is almost completely unusable. I had a wrist replacement done about 5 years ago, right thumb fused due to severe subluxation and multiple tendons have been repaired due to rupture. I currently cannot grab anything unless it is large enough for my hand to fit around. Anything smaller than that and I could be an hour trying to pick up a pill that I dropped on the floor. My left wrist is heading in the same direction.
In regards to question 1)RA swelling? 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?
Yesterday my rheumy Dr “It Remains to be Seen” told me that due to visible lack of swelling in my joints, my RA MUST NOT be active. Even though I have had RA for nearly 20 years and I know my body way better than anyone else. I feel like I have the flu, sometimes I can barely make it out of bed to just even get to the couch, multiple joints are hurting. But I DO NOT have a fever, never have in fact since I was diagnosed. And he could not see or palpate any swelling. Yet my left wrist is extremely painful to move and has been slowly getting worse. He will not xray it because he says the pain I am feeling in that wrist is due to the previous damage and there is no need to re xray.
I came home so discouraged and started researching if it was possible to have active RA and current damage going on without visible swelling and I found this website. I actually found other sites that documented that this is possible. I also remember my hand surgeon telling me that even though he did not see any swelling on my right wrist before he operated on it he KNEW that there was current inflammation inside the joint. He did xray it and turned out I was actually missing some of the smaller bones in the joints space. They had simply been eroded away. So sad that my rheumy would not listen to me over the past few years and waited so long to send me somewhere to get it evaluated. Could have possible avoided me having to have a wrist replacement.
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?
During my 19 years of RA, the one and only time that I had an elevated CRP and sed rate was early on in my disease and it was when I had completely been taken off of prednisone. That was it. Those labs have been totally normal since then. And I have pretty severe deformities in my hands, wrists and feet with multiple surgeries. I have RA pain every day, all day. As I am sure most of you do as well.
Doctor’s comments
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….”
Well, that is why my rheumy is called Dr It Remains to be Seen. Because he ALWAYS sees that my RA looks great, I don’t see any swelling. Your joints look great. You should be so grateful compared to some of the little old ladies I treat. I feel like saying well crap, they are elderly patients who were not treated aggressively back in the day that they did not have access to the meds we do now. I am 48 for pete sake’s. I should not have this much damage at my age! Sorry, I am really cranky tonight.
So sorry this was such a long rant. I wanted to answer all 3 questions since they all currently something I am dealing with. I have been begging my rheumy to switch me back on Orencia IV because I do not feel that the Actemra IV is working effectively. But based on lack of swelling, forget it. He won’t even consider it. So, I am now searching for a second opinion and also looking for a hand and wrist surgeon that has experience with wrist replacements.
If anyone knows of a multi specialty clinic that I could research that has both Rheumatologists and Orthopedic Hand and Wrist surgeons that perform wrist arthroplasty, I would truly appreciate any info. At 48 years old, I do not want to give up on the use of both of my hands. I have too much of life I want to live and enjoy. My first grandchild will be born in August and with my current situation, I am not going to be able to help my precious daughter change a diaper or even pick up my granddaughter. I need help!! Anyone??
Thanks to all for taking the time to listen to rant and rave. Sometimes it just feels good and I know that the people reading this will know what I am going through.