Rheumatoid Arthritis Swelling: My Confession | Rheumatoid Arthritis Warrior

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…

Florida sandman instead of snowmanWhy 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.

  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?
  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?
  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;” “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:

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.

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

374 thoughts on “Rheumatoid Arthritis Swelling: My Confession

  • September 24, 2014 at 8:35 pm
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    My spouse and I absolutely love your blog and find most of your post’s to be precisely what I’m looking for. Would you offer guest writers to write content available for you? I wouldn’t mind producing a post or elaborating on some of the subjects you write regarding here. Again, awesome site!

    Reply
  • December 4, 2014 at 12:11 am
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    Profound stiffness, never had swelling. Lots of pain. Sometimes a hard nodule. Frequent joint creaking, cracking and pain. Negative Rf, positive cup.

    Reply
  • February 20, 2015 at 5:44 pm
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    I was diagnosed with RA 3 years ago in my early twenties. I have experienced very little / minor swelling – and this swelling was mostly in the first year after diagnosis (affecting my fingers only). However, I continue to experience pain – both moderate and extreme, despite this lack of swelling (fingers, wrists, shoulder, elbow area, knees). My CRP tends to always be slightly elevated but relatively near normal. My rheumatologist, despite my ongoing pain, has stated several times that he feels that I am doing well and should slowly be reducing my methotrexate dose until I can come off it completely as he says that pain just isn’t one of the known ‘markers’ of RA. To properly ‘qualify’ (!), it seems, I must have persistent swelling also. Apparently “everyone gets aches and pains”…! I find it so dismissive and its incredibly frustrating and upsetting. Very interested to see that there are others with similar experiences.

    Reply
  • February 28, 2015 at 8:51 pm
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    Hi,

    Thank you for this. I am just in the process of trying to get docs to listen to me. I finally got through to my doc that it’s not just one elbow that hurts and therefore not tendinitis.(It took many visits to get this far) Many of my joints hurt and really bad. I can hardly use my one arm at all. The other is getting there.

    I’ve tested ANA positive but all of my other test RF and such have come back negative. The rheumy I saw did absolutely nothing. He looked at the blood test results my GP sent him and told me I don’t have RA and then blew me off. Aside from moving my leg a little he never even examined me.

    My Gp says because my tests are negative and I have no swelling I don’t have RA.

    My question is, why then am I in such horrible pain on both sides of my body? The doc has put me on heavy pain killers and is sending me to a pain clinic.

    The docs story has changed a bit too. For one visit it was all OA, then a few visits it was tendinitis, now he’s back to OA again.

    What I do know is they found OA in my lower back and my hip. I strongly suspect that I have RA but I have no where to turn now unless the pain clinic can help.

    RA runs in my family as does autoimmune disease in general. Sorry this is so long but I’m frustrated and not knowing where to turn. Thank you for doing this site. It’s really helped.

    It sounds like many have a similar story and I’m so sorry to all who battle RA and docs.

    Reply
  • April 6, 2015 at 5:03 pm
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    I was just recently diagnosed with seronegative RA. Every test given to me is completely normal. RA came on very fast for me. I jokingly tell others that I went to bed a 52 year old and woke up a 90 year old. My hands and feet ache, but it’s my knees that are so painful. I live in a two story house and the stairs are a nightmare. Every step I take on them leaves me feeling as if my kneecaps are going to come flying off. My doctor is very sympathetic and told me that the tests are just numbers. (I also have a thyroid condition that didn’t follow the rules either. I would be “in the normal range” but my hair would be falling out and SO dry, and my skin was so dry that it would absorb baby oil like it was nothing, and I had no energy, but “everything was normal” – Insert scream here!) In answer to your question – no swelling at all. To look at my knees you would never know anything was wrong. I was given cortisone shots – nothing. I was given prednisone – which did help my hands and feet, but did nothing for my knees. I am now starting Celebrex and Hydroxycholoroquin. Hoping that they do something for me! Thank goodness for a GREAT husband, bags of ice, and Tramadol.

    Reply
  • April 7, 2015 at 2:01 am
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    I have swelling occasionally, but often not. My joint pain is always there, sometimes really severe, where I can barely move and sit up crying all night, but may be better by that same afternoon. Sometimes it’s more mild, like a mild sprain, but can get worse in a new york minute. Some days I can walk more easily, and other days I can barely put my feet on the floor. My inflammatory levels range from 35 to about 70 (sed rate), however at 35 once I was barely able to walk on one hip. I belong to an HMO, and every doctor I have had is rude. I can’t get an appointment except for about two months out. I may not be struggling on the day I see the doctor, so they act like they can’t understand why I have pain with no swelling as evidence. It is very frustrating. I have been diagnosed with RA and Sjogrens. I believe the lack of empathy and lack of belief from these doctors of patients without excessive swelling causes unneeded anxiety and depression. It certainly has affected me.

    Reply
    • October 31, 2015 at 1:59 pm
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      thank you very much for sharing Ann. Those concerns mirror many I receive in email & comments.

      Reply
  • May 21, 2015 at 4:38 pm
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    Thank you for this article. I have been dealing with this as well. Very frustrated when the doctor tells me that I’m in remission when the pain is still very intense. She stated that the pain could not be coming from RA since there is no evidence of swelling. Oh there is swelling but not enough to satisfy the doc. Such a pain to deal with this constant companion that we have.

    Reply
  • May 23, 2015 at 11:22 am
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    I am 23 years old and I have had knee pain for many years. Every time I would tell my doctors about the pain, they would always tell me its other things. Theyd give me mild pain pills (that never helped any!) and send me off. Never trying to figure out why I am in so much pain. The pain always seems much worse when its cold. Over the last few years I have noticed it is not just my knees anymore. It is now my knees, my elbows, my wrists, and all the joints in my hands. I never notice any swelling but the pain is awful. Recently I was finally able to get a doctor to do a blood test. He told me my test shows signs of RA. I am now in the proccess of going to get xrays done so that i can see a rheumatologist. My doctor says I wont know it its really RA until confirmed by the rheumotologist. since then i have been doing some mild research so that i can be as aware as possible as to what to expect from my body as well as from the doctors. At this point part of me is greatful to finally be getting some answers as to what is going on with me, and the other part is terrified that its not what the doctor thinks it is and i will have to continue suffering with no answers. I am just wondering if anyone can give me any advice/suggestions or information on what is next.

    Reply
  • June 4, 2015 at 2:06 pm
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    I was recently diagnosed with Rheumatoid Arthritis. I’d been having many symptoms for a while and decided to have my Primary Care physician do a Rheumatoid Factor test. My test did come back positive to my surprise. I was surprised because although I was having pain, I’ve never and still haven’t had any swelling. I have symmetrical arthritis in my wrist, elbows, knees and ankles that really hurts. I also just tore my right knee meniscus for the second time in 2 years. This time I have a Baker’s Cyst as well. I was told people with RA get Baker’s Cyst. My other symptoms are low grade fevers, very dry lips and eyes along with occasional chills. I see the Rheumatologist for the first time in a month. I wish the best to all of you.

    Reply
  • June 23, 2015 at 9:20 pm
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    And here I thought maybe on top of everything, I was crazy too! I am on Methotrexate and Orencia after failing Enbrel. I had a recent flare that hit me toes, ankle, knees hip, both elbows and my shoulders. I was beyond fatigued. My doctor insisted that I was in remission because I had no swelling…insisted! She didn’t have time to answer my questions since it was a 20 minute appointment. I work in a doctors office, 20 minute appointments are for sore throats and ear aches! I am beyond frustrated and have decided to interview another doctor. My Vectra test came back showing moderate, my CRP and SED rate came back showing inflammation…but no swelling..so she insists I am in remission and perhaps I need an anti-depressant. Nope…not today, not ever! I wish this blog would get active again…looks like a great source of support that has gone quiet.

    Reply
  • July 21, 2015 at 11:01 am
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    I just recently had pain and swelling suddenly in my ankles, wrists and hands. It took a few weeks for the doctor to get me in but I still had some swelling when she did. My joints often change shape rather than swell I think as they are hard like bone not squishy. Despite that they were visibly changed the doc felt each joint and said she could only feel inflammation in one or two joints. She has never really found inflammation during this test where she feels each joint and I dont understand it as they hurt and get stiff and change shape but dont exactly swell like what some patients describe. My CRP tests have come back normal as well a few times. How can you have pain and stiffness and deformed (for lack of a better word) joints with no inflammation according to the feel test that the doctor does.

    Reply
  • January 11, 2016 at 2:31 am
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    OK, well i dont know if this is RA or fybro or what but 2 years ago I noticed that if I walked for more than 10k’s or so it would feel like there was something like a bit of stray cartilage that would twig a nerve every step i took,in one of my right toes at the base joint where it joins the foot.
    A year later I hurt my hip , the site of an old injury from my late teens , it took 4 months to stop aching and this ‘coincided’ with the toe thing.
    Another year later I was about 5 weeks into giving up smoking and i developed restless legs , tingling in my feet, especially after walking.I also get lots of headaches and lots of white paste on my tongue, oh and positional bent thumb tremor on my right thumb just sometimes though.
    And then this year….a sudden onset of fatigue , dry eyes when sleeping, a nodule under one of my finger joints (feels almost identical to the toe) . sore tendons in both wrists, sore bone ends near the wrists , sore thumbs and even sore knees, i also had what feels like a slight pressire on my lungs near the middle of my rib cage. Sometimes there is slight redness but there is no visible swelling. I think there is a small pocket of fluid on the arm side, before my wrists.the pain seems very symmetrical.
    I’m really tired
    It all sounded like RA to me, but just today my doc has said it cant be . my rheumatoid factor is >20 and CRP is 0.6 which is really low. I also notice my right calf muscle is tight every time i site for more than about 10 mins.
    If anyone can point me in the right direction I’ll love you forever. I’ve visited so many sites and all my doc wants to do is put me on antidepressants . I’m not depressed I’m sore and tired.

    Reply
  • April 30, 2016 at 1:51 pm
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    This is happened to me! Last Tuesday my new rheumy told me he can do nothing for me based on negative blood work and no swelling.
    I moved from Colorado and my health has been steadily improving with the best vitals and blood work in over 30 years.
    BUT, my hands, wrists and elbows are not right. Hands are stiff and wrists and elbows get sharp, stabbing pain when doing physical hand work in the yard, garden and wood shop.
    I went from bedridden in 2009 to all most normal. I know the difference between o-a pain and stiffness and “non-oa” pain.
    He did say to get a second opinion, which I shall, and see a hand specialist. My hand therapist has referred me to “the best” in Portland so those two are on the agenda. He’s given me a couple cortisone shots but hasn’t done a complete work up. I’ll ask for ultra-sound. My hand therapist said he is the best diagnostician so we shall see what he says. To me, a biological scientist, it appears to be malfunctioning synovium for whatever reason.

    Reply
    • July 22, 2016 at 12:22 pm
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      Bill,
      I hope you got a clear diagnosis.
      Ultrasound is your best bet but they are hard to come by in the US. It’s worth it to drive a distance if needed. If you haven’t already, read this: https://www.rawarrior.com/rheumatoid-arthritis-swelling-take-two/
      Even when we can’t “see” gross / conspicuous swelling, there is often inflammation detectable on MSUS.
      Also, the injections are reducing the inflammation, making it harder to detect. I’ve often forgone a shot until another doctor had a chance to “see” my joints.

      Reply
  • May 27, 2016 at 10:05 am
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    Hi Kelly,
    I just stumbled upon this page due to searching RA without swelling…I’m 50 years old and just last month, after decades of pain, my blood tests revealed a positive RA factor, although my ESR and anti-CPP are within the normal ranges. To be honest, it was a relief to finally have some confirmation of the pain I’d been experiencing! I wake up everyday with pain, especially in my hands and feet. My first steps out of bed are like walking on crushed glass and the burning in my hands and feet are constant. I wear a thumb brace on my left hand due to “severe” joint damage from arthritis. Numerous times I’ve had debilitating neck pain (not sure if this is RA as well) along with right side rib pain that forces me to lie down after a short time. I’ve had arthrograms done on my jaw joint (TMJ) that also revealed joint deterioration. Currently I’m on naproxen (one month) and waiting to see a rheumatologist next month. I’ve seen this particular doctor before because as I said, I’ve complained numerous times before to my GP about pain, but gotten no specific diagnosis. Does anyone out there know what types of questions I should be prepared to answer once I see the Rheumy?

    Reply
  • June 4, 2016 at 3:14 am
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    I have had swelling in ankles and fingers, but mostly no swelling in knees and shoulders. Sometimes puffy, sometimes not. I can have severe pain without any swelling and yes, doctors always try to tell me it’s not RA causing the pain, it must be something else because of the lack of swelling. It is so frustrating that it becomes depressing at times. Finally getting a diagnosis of RA and Sjogrens,but the doctor still treats me like a hypochondriac because of a lack of swelling. The only saving grace is the elevated Sed rate that marks inflamation.

    Reply
  • August 12, 2016 at 6:34 pm
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    I’ve come across your blog today, and I’m in heaven. The amount of information, and then the testimonials! I’m not alone…there’s others out there experiencing the same issues.

    Thanks for making me feel less alone.

    Penny

    Reply
  • August 15, 2016 at 5:02 am
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    My first flare started with low fever, fatigue flu-like aches for a few days and quickly turned to excruciating elbow, knee, hip, shoulder, wrist and ankle pain. I was covered with bruises and swollen only a little. I went to ER and was given an IV with anti-inflammatory and pain meds. After many tests (all normal results) I was told I probably have a virus and ordered to follow-up with my PCP. That night, I felt better so I never followed up. Two weeks later I woke up and couldn’t see. It was as if I was in a fog or a cloud. I ran to eye doc who advised I have bilateral uvietis steming from an underlying medical condition. After that, the pains, fevers and fatigue were non-stop on top of eye pain, headaches and loss of vision. (I had to put two different eye drops in each eye every hour for 6 months!) Luckily, I was quickly DX with seropositive RA and the VECTRA DAS depicted I was in moderate to severe. My blood work always shows low SED rate and CRP although my pain is severe, and major organs are being attacked. Usually, my pains are very bad and swelling is barely noticeable. My rheumy brought my swelling to my attention. I bruise with flares where my pains are and no, it’s not a side effect from meds, when on meds the bruising subsides. RA also attacked my veins, which resulted in a rash called Levido Reticularis and had eye hemorrhages that subsided on their own in a week or two. I was very swollen while on prednisone (oral and eye drops) I also had large amounts of blood in my urine that remains a mistery (but I think it was from prednisone). I had to wean off due to my eye pressure very very high and other bad side effects. My fingers are always swollen my right more than left, with pain without, but it’s not that noticeable. I only know what to look for because my rheumy showed me. It took over a year to get my RA in control. Prednisone, and oral MTX did nothing. It took 6 months of MTX injections to finally help my eyes as I also got bouts of espicleritis (spelling?) a few times. My rheumy said it will take 3-6 months for MTX to fully work, and the 6th month is when I started feeling relief and hope. Three months ago, my VECTRA DAS,blood work SED rate and CRP is allegedly normal. I don’t know how because I still have pains (not nearly nearly-I get by with Naproxen and aleve). I’m very stiff morning and night hours. I can barely get up on my own. I had 99.3 fever earlier today (my normal temperature is low 96°-97°) 99° and over I feel sore, achy and hot, but only one time my fever went to 101°. Sorry for long rant.. In short, blood tests show one thing and my body shows another. At times, pains are unbearable with little to no swelling.

    Reply
  • November 6, 2016 at 10:00 pm
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    I was diagnosed in 2015 rf negative. I have an enormous amount of pain with minimal swelling. Fortunately I have a very knowledgeable rheumatologist that knows there can be destructive unnoticible swelling

    Reply
  • January 8, 2017 at 10:41 am
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    I have had ra for 20 years and I get swollen badly! My arm or arms will double in size legs also, cannot move well and steroids for me are no longer the magic trick to calm it down! Just wait a few days for it too calm down! But for me bad swelling, my disease has Ben out of control for three years with humaria, solumedrol, and metatrexate! Wish I had answers as more time shut in then being active…..but I can still move so you have to move no matter the pain!

    Reply
  • January 10, 2017 at 5:35 pm
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    Right now my elbows, knees, shoulders and wrists are on fire!
    However they look perfectly normal.
    Occasionally my ankle swells but that is all.
    My Rheumy never discounts my pain. I am currently taking injectible Mtx and Orencia.

    Reply
  • March 9, 2017 at 7:42 pm
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    I’ve never had swelling except for slight generalized in the fingers fingers, not specifically at the joints, either. My hands just stiffen up. I get triggers in all my fingers. My knees stiffen up and sometimes I feel pain behind the knee, down the front of the shinbone, the ankle and foot. Never any swelling. This is why I never ask for pain pills. I’m afraid they won’t believe me. Everything always looks fine.

    Reply
  • March 9, 2017 at 7:45 pm
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    I’ve never had swelling except for slight generalized in the fingers fingers, not specifically at the joints, either. My hands just stiffen up. I get triggers in all my fingers. My knees stiffen up and sometimes I feel pain behind the knee, down the front of the shinbone, the ankle and foot. Never any swelling. This is why I never ask for pain pills. I’m afraid they won’t believe me. Everything always looks fine.

    I have neg RA factor. (Last they checked) Positive ccp and when the pain is bad, sed rate and crp go up fairly high.

    Reply
  • April 17, 2018 at 6:56 pm
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    Hi my name is Gabrielle , in Feb of 2012 I was in a car accident. Ever since then my pain is bad. I was going to a spine specialist and was diagnosed with PA in my L4 L5 and S1. I was having other joints starting to hurt so he did a referral to a rheumatologist.I have recently started seeing a rheumatologist I have little viable swelling but pain everyday. I’ve had blood work done everything comes back normal. He keeps telling me oh its just fibro cause you have no visible swelling but I have bruises on my finger joints. My knees and hips lock up on me.my joints crack and pop all the time and most of the time when they do its so painful.I recently had a nuclear Medicine bone scan done and the nurse called amd said everything looks normal. I’m so annoyed I just want answers to the joint pain. I’m getting discouraged. I feel like they won’t figure out what is wrong until its too late. I want the doctors to listen to my pain!! I feel like they are blowing me off.

    Reply
    • April 28, 2018 at 4:10 pm
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      Gabrielle, I’m so sorry this is happening. You are not alone – so many people have had similar experiences. Swelling can be fickle in RA and one it becomes more constant, it’s harder to treat.
      If you want to read more about rhe bone scan, here’s the list of articles here about that – and helpful comments from patients.
      https://www.rawarrior.com/tag/nuclear-bone-scan/

      Reply
  • June 20, 2018 at 1:22 am
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    Thanks for a great site, Kelly, the compilations of people’s experiences such as this thread are really interesting when, like me, you have been recently diagnosed, and don’t know the range of things that might happen. It is obviously a confusingly complicated disease, with many possible combinations of symptoms. I have had no visible swelling, but my rheumatologist said she could feel that some PIP joints were a bit swollen. The diagnosis was based on this, plus positive RF, very high IGM RF, symmetrical pain in a number of joints, and a trigger finger. She did not think it was significant that the swelling was minimal, or that my ESR, CCP and other IG RF factors that were tested were all normal. The pain is worst in MCP joints, wrists, an elbow and one shoulder, which hurt all the time. However, none of these seems at all swollen to me, whereas the PIP joints with identified swelling don’t hurt that much, or that often. So my experience so far is also that pain and swelling are not correlated. Thanks again for putting this all together. Reading other people’s experiences, I gather that I am lucky with my doc. Your book is good too – everyone with RA/RD should read it. I learned a lot from it, and from reading a few of the footnoted papers.

    Reply
    • July 26, 2018 at 6:07 pm
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      Thank you for sharing your story and for reading the book, Derek — my goal is to save lives by helping people be better informed.
      I hope you can also write a book review on Amazon and Goodreads.

      Reply

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