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/

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374 thoughts on “Rheumatoid Arthritis Swelling: My Confession

  • March 10, 2011 at 2:35 pm
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    One of the best doctors I had did not use swelling as an indication that I was in a flare. She actually (gasp!) touched me. She would put her hand on my back and decide whether it was hot enough for a *steroid shot. She’d say “yes, you are hot today, let’s get the blood test to make sure, and then we’ll give you a shot if I’m right.” And she was always right.

    Anyway, to answer your question, I rarely ever have swelling that is visible to the eye, but, oh, the pain is there, along with all of the other things (fatigue being my least favorite). And I have had a doctor tell me that I did not have RA at ALL because of blood tests, when I was at a point where I could barely get out of bed, get in the car and walk into her office.

    *This was many years ago, and MTX was very newly on the market, and with the side effects and the fact that I was raising a child and going to college, we decided that that treatment was not the best thing for me at the time. Couldn’t take any nsaids or anything by mouth due to ulcers, so steroid shots were the only thing that worked.

    Reply
  • March 19, 2011 at 3:33 pm
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    I was so happy when I read this. My relationship with swelling and pain is so backwards!

    In answer to #1, my swelling and redness usually are fairly severe, but only AFTER the pain is gone. During the really painful times, it is rare for my joint to reflect what is going on. Then when the pain subsides, for two to three days, the area is swollen and bright red.

    For #2, I have had normal ESR/CRP tests when I had a great deal of redness and swelling and high ones when nothing looked inflamed and I was not in a great deal of pain. It is just so strange.

    #3, I have been really lucky with my Rheumatologist. I don’t know if it is because he is also a researcher at the University or if he is just really compassionate, but he has never questioned my word on my symptoms and has been at a loss himself to explain the swelling etc..

    Reply
    • March 19, 2011 at 3:45 pm
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      Thanks so much for adding your experience Stacey. It’s very helpful. & I’m so glad you have a good rheum doc who treats YOU, not your labs! As you can see byt the 200 comments here, your RA may not be so “unusual” after all!

      Reply
  • March 21, 2011 at 9:21 am
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    While I’ve had RA for over 15 years, I seldom have swelling. I am fortunate that biologics have done a lot for me. However, this lack of swelling always puzzles my RA Doc. He is sure it hurts more when it swells, do so. Over the past 5 days the knuckle joints on my left hand have been swollen and bruised but almost no pain. This after almost a month of very bad pain and no swelling.

    It is no wonder that people without RA find it so hard to understand.

    Reply
    • March 21, 2011 at 9:29 am
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      I meet so many patients who say these same things. It puzzles me that it puzzles the doc. It seems like since they haven’t experienced it, it’s just “intuitive” to them that swelling=pain.

      Reply
  • March 25, 2011 at 8:52 pm
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    Kelly, thank you so much for your honesty, which is making me feel sane at this point. I have constant pain in every joint, but I was just at a specialist who negated my local doctor’s diagnosis of seronegative RA because I don’t have “enough” swelling. I started to cry in his office because the pain is bad enough to severely interfere with daily functioning (you know how it is) but they have taken me off MTX even though I saw major improvement while on it. I am waiting to see another specialist in another city. I had a little swelling in my fingers, elevated blood levels at first, now nothing on any blood work but still daily pain with morning stiffness, worse in my hands, feet, and knees. This was all set off for me last year around the time that my thyroid went out of whack. Peace and blessings to you all. Thank you so much for your help.I will keep going until I find a rheumy who listens!!

    Reply
    • March 25, 2011 at 9:04 pm
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      Your story is too common. I’m sorry. Frankly, I’d take the evidence to another rheum doc & not even mention or think of this one again. Of course, methotrexate can improve your symptoms and your bloodwork…

      For the last couple of years I’ve been dealing w/this problem with other patients and I’m extremely confident that we are not “unusual” as the 200 comments here demonstrate. You don’t feel that confident when you are sitting in the office not swollen and someone denies what you tell them or questions your statements of how bad the symptoms are. But you aren’t alone at all. Let me know if I can help.

      Hopefully, we can see changes in the system in our lifetime.

      By the way, my thyroid disease, which I’ve had since age 15, went into a new phase at my RA onset.

      Reply
  • March 27, 2011 at 12:21 pm
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    My doc never questions if I swell or not, I have SEVERE pain, and now swelling, my CRP is high and so is Sed Rate, and he knows that is my RA and never questions.

    Reply
  • April 6, 2011 at 7:05 am
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    Hi!
    To answer your 3 questions specifically: yes, yes and yes!
    I’m 29 and was diagnosed with RA just over 2 years ago. At the time I was in a mess with pain in pretty much every joint and struggling to get out of bed in the mornings because the pain and stiffness was so severe. I was initially put on methotroxate and prednisolene. The mxt didn’t agree with me so was put on sulfasalazine; my dr has also given me vitamin d. I’m not on prednisolene anymore but do have steroid injections every so often to ease the pain.
    Your post re swelling really strikes a cord with me. The RA has never gone away since I’ve been taking medication. It did subside slightly for a time however, over the last 6 months has progressively been getting worse again. I struggle to cope on a weekly basis and have been forced to quit my job as a solicitor as I’m not able to hold down such a stressful job while trying to get on top of the RA. I’ve seen numerous consultants, the latest has just done a series of tests: bone density scan, x rays, and the usual blood tests. Despite having continuous pain in my hands, wrists, shoulders, elbows, knees, ankles and heels (I also suffer with severe fatigue) my consultant has said that everything looks “good” and he doesn’t consider my RA to be active!!
    Before being diagnosed I used to have some visible swelling in my wrists, fingers and knees. Now, I find there is little swelling in any of my joints even when I am stiff and in pain. The effected joints do tend to be red but as my blood tests are not showing anything (Normal CRP, Sed, Esr) my consultant seems to think I’m fine when I’m really not!
    I’m lucky to have a very supportive boyfriend who, having seen the mess im generally in ( he also feels the heat of my joints when they are sore) he knows, like me, that im not fine and more needs to be done. I am so confused but am determined to gain a better understanding of my RA and have requested copies all my tests results (blood and scans etc) lab reports, consultant letters from the last 2 years …. If necessary I may seek a further opinion from another consultant.
    I’m glad to have found your blog to find that I’m not alone!
    Thank you.
    Gemma

    Reply
    • April 6, 2011 at 8:44 am
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      Thank you so much Gemma for taking time to post that information. It does help others feel not alone & understand RA better.

      Reply
    • April 14, 2011 at 9:53 am
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      Will need to get into the actual study later, but I read the medscape analysis. This would be highly dependent upon skills that most rheum docs don’t have. My last doc’s knowledge in this area is something I wish could be cloned. Those finger pinching exams always left me with pain in every joint that was examined, but the doc detected/recorded swelling that was scoffed at by previous docs I’d met.

      I’m very rushed, but briefly — the argument exists (have heard from other patients /docs) about whether the swelling must be located on the front or back of the joint or must be visible to the eye or just detectable w/ the finger pinching. Skilled docs know that swelling varies since this disease is so variable w/genetics. Poor docs rely on the presence of exaggerated, visisble swelling on back of hands.

      Reply
  • April 14, 2011 at 11:24 am
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    My Ra was diagnosed three years ago, although many suspected I had it for years with all the tendonitis, rashes, and bursitis I dealth with. I initially went to my family doctor with tenosynovitis in right hand, after limping in to work for 3 months with my feet. Originally my rheumy thought fibromyalgia until my RF and CCP came back positive. About a month ago, my RF was negative, and my doctor and I thought I was in remission after feeling so good with monthly remicade infusions, and down to 2.5 prednisone. But then spring break came and I skipped to my first five week interval. Back on high dose prednisone again. Yuck!! I think I have gained 10 pounds, getting short of breath with exertion, and fatigued. Today….hands swollen, tendonitis in elbows, and pain….always…but I am walking, and hopefully will be able to work my 12 hour shifts this weekend. For me, me goal is to be able to work while I can to plan for my future. But, I sure have a greater respect for my patients who have dealt with RA before all these new medications. They sure are tough!!! God bless them!!!!

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  • April 16, 2011 at 8:53 pm
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    Hello… I have RA and have no swelling. Here and there and the only reason I notice if because my engagement ring isn’t loose anymore. When my fingers first started hurting there was swelling, anymore. It’s been over a year since I first had that pain. To answer your second question, I have always had normal CRP and my doctors have called my sed rate at times ‘Nothing remarkable’ even while my pain rating was 9/10. Finally, question three, I’m 22 years old and have had symptoms of RA since I was 18. I just got a diagnosis about 6 months ago, every other doctor I saw told me that I was depressed, too young to have a joint disease, and one flat out told me ‘No, I will not feed into this arthritis claim, because I will not feed you pain medication when I can give it to someone who needs it’. Thanks for reading

    Jessica

    Reply
    • April 17, 2011 at 8:09 am
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      Hi Jessica,
      Thanks for sharing your experiences. Of course I’m shocked to hear that doctors actually said such ridiculous things- but I also believe you since I’ve heard them so many times!

      Unfortunately, I can almost promise that swelling will come eventually. In many of us, it’s intermittent and less dramatic. Also unfortunately, pain and damage don’t seem to correlate with swelling, so we can still have those either way. I so hope you have a good doctor now who will treat you instead of dismiss you.

      Reply
  • April 19, 2011 at 2:59 pm
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    I was diagnosed two years ago (at age 26) after about three years of symptoms. I have been dealing with swelling the entire time. My fingers, toes, ankles, and neck seem to swell almost daily, especially in the early morning. I consider myself to have a mild case of RA compared to the many other members in my family and am thankfully only taking only Plaquenil and Prednisone. I’ve been trying to wean myself off of the Prednisone and started taking one mg less for three days last week. I woke up to fingers at least three times their normal size. I couldn’t even slide a ring over the top joint of my finger (just past the nail). I couldn’t believe it!! My Rheumatologist warned me to not “rock the boat” too much, but I had no idea a one mg change would do that. I think I’ll stick with the Prednisone a little while longer. I’d rather deal with slight swelling everyday vs. Kielbasa fingers!!
    Thanks for the blog, I really enjoy it!

    Reply
  • April 29, 2011 at 4:31 pm
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    I always have swelling in my wrist, hands, knees, and believe it or not my gums! Yep it’s rough having your teeth cleaned with swollen and sore gums! My toes swell on and off. My sed rate never goes up high. My CRP is usually normal. Only thing that goes up is my Rheumatoid Factor.

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  • April 30, 2011 at 8:18 am
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    The swelling in my hands, the pain too, is what led my PCP to run the first tests. She found the RA factor right away. Diagnosed me on the spot, and set me up with a Rhuemy. My hands have always shown swelling. I have been off MTX for 2 weeks, due to Broncitus, and right now my hands are looking like boxing gloves. In a sick way, after reading so much here, I feel lucky to have “visable” signs of RA. And blood tests to back them up.

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    • April 30, 2011 at 10:11 am
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      Sorry you have them Rebecca, but I’m glad they helped you get treated. What happens to some people is that the initial dramatic swelling (I had it too – on my feet) resolves with treatment, but the pain, stiffness, and weakness remain and the docs are confused at that point. Anyway, I hope that your treatment does wonders for you!

      Reply
  • April 30, 2011 at 7:14 pm
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    I think the visible swelling is present with overuse, or injury. We see it in the beginning because we haven’t adapted to protecting our joints. My godmother told me years ago that now her hands are completely deformed they hardly hurt at all. When I was working in clinic long before I was diagnosed, a teenager came in with a terribly swollen inflamed knee. He woke up with it the day after he was jumping on and off a curb, just hanging out with his friends. We tapped it for 60 cc/2 ounces of fluid. The rheum MD told him to take it easy, explained how easily he could damage his joints, I’m sure it changed his childhood. I think we have RA pain to protect us from overuse, when we push through the pain, the swelling and the loss of range of motion will stop us in our tracks.

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    • April 30, 2011 at 8:56 pm
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      It’s an interesting theory Kathi. I think sometimes people get swollen (I know I did) in the middle of the night. I just woke up one day with toe joints that were enormous and out of place. Other times, though, it’s just like you say. Most increases in flare (I’ve never had a break in flare) occur after use. (I’ve named this the “usage principle.”) And the trip to Arizona I just took required a lot of sitting with my knees bent – for 4 days and then on the plane ride home. Here I am 3 wks later and I still can’t straighten them and they are still swollen. The knees hurt for months already but now they’re swollen too. So I guess they’re worse.

      Reply
  • May 2, 2011 at 12:45 pm
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    I have always wondered if I was not a “real” RA patient because I am seronegative. I have subtle swelling but I have lots of pain and stiffness. I have tenderness in my hands feet and elbows. My doctor did put me on anti-depressants but that was because of my fibromylagia. Most anti-depressants make me ill so I just have to push through. We have found that my ra causes my fibro to flare. RA flare = fibro flare. I had a CT scan to confirm my diagnosis of RA. So as I write this my hands are hurting but they are not swollen.

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  • May 7, 2011 at 3:39 am
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    The first joints affected by RA were my TMJ. How does that swelling show up? minimally! Eventually I had an MRI done that clearly showed synovitis in both joints (along with a fair bit of bone degradation – especially in the right side). I now get quite a lot iof swelling in my fingers, but it can go up and down 2 or 3 times a day. Inevitably, my fingers are not very swollen when I see my rhuematologist, so officially, I do not have RA anywhere apart from my TMJs.
    I have blood tests on a monthly basis and the CRP test usually does not relate to how physically swollen I was on the day of the test. Although, if I get a very high CRP score then I often become very swollen in the days following (usually a time lag of 5-7 days).

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  • May 8, 2011 at 4:18 am
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    My RA was dx’d last May, but when I look back, my symptoms were active and were attributed to “getting older” for at least 17 years before. My PT thinks it is actually JRA. (I’m 62 now, but in 2nd grade had what was dxd as “growing pains” and spent part of a year home from school) I have positive sed and RF and CRP, numbers are low.
    I have whole body swelling; right before my dx I gained 20 pounds in 3 months – and it was all fluid. I see a second PT for lymph drainage massage once a week, and do daily 30 minute sessions on myself. I’ve lost 20 pounds in the past 6 months, using this treatment, and believe I will lose more. The swelling is in “pockets” around all joints, any place I have ever had a major injury and around my internal organs, causing my belly to look like I’m 9 months pregnant at times. I would encourage anyone with swelling to see a lymph specialist. (and, as in all things, it took seeing 5 different ones to find the one who fit me best!)
    I also have celiac disease, and the swelling is related to the leaky gut. If I get accidentally cross contaminated from gluten, I will immediately start swelling, sometimes gaining 5 pounds overnight. My PT was amazed the first time it happened. I was doing really well the week before and she could see and feel the difference in just one week.
    I am treating my RA with acupuncture, Physical Therapy, Lymph drainage massage, Diet (GAPS/SCD), heat, cold, Vicks vapo rub and no meds.
    Last June, my Rheumy gave me three months after dx to educate myself and try the things I wanted to try, she was very supportive, but skeptical. Sept 2010, when I next saw her, she expected that she would be putting me on methotrexate, prednisone, and something else I don’t remember. Instead, after a thorough one hour exam she was amazed at my progress, told me to keep doing what I was doing, come back if I got into trouble, and otherwise come see her in a year.
    I had blood work done at my PCP in December, and markers have not budged, but RA symptoms continue to be improving. I have had 5 flares since I started down this healing path, and am beginning to understand that, for me, they are brought on by two things- accidentally getting gluten exposure and over use – pushing too hard, doing too much, not resting enough. First flare was scary as h***, because I felt twice as bad as on my previous worst day. It only lasted two days & I was back to “normal”. Next three were minor, and also lasted 1-3 days. The current one has been a roller coaster lasting 6 weeks. Actually, it has been several back to back flares, where I never quite got back to base line “normal” before the next upswing. It appears to be under control for now. I learned a lot from this, as I have been logging food, each joint’s condition, swelling, weight, weather conditions, etc. every day, and now see relationships that see logical.
    All in all, my pain, stiffness, burning, tenderness are at about a 2 now, compared to an overall 5 when I was dxed, with a 20 in my left wrist (with 1- 10 scale, and 10 being the “worst pain you’ve ever felt” scale the docs like to use). Some rare mornings I even get out of bed without any stiffness in my feet at all.
    I’ve been lurking around on some of the blogs for about a month now. When first dxd I only researched alternative treatments, and couldn’t read about the journey most folks were on, it was just too scary. Now that I’ve made it through almost a year of my own journey, I’m able to read more and am finding much helpful information. This is my first venture into the blog world, and I’m finding it very interesting, but sometimes difficult to find specifically what I’m looking for. Do you know of anyone who has successfully used diet and alternative treatments to treat RA?
    Thanks for your most wonderful blog and all the support you give.
    Susan

    Reply
  • May 21, 2011 at 5:44 pm
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    Kelly, I do not know if you still need this input, but I just found your material on RA swelling, and I wanted to share. I have had remarkable sewlling around both knees in the past after trying to jog with my husband. I was doing quite well until I woke up one morning with knees like nerf footballs. It went away, but the joints remained tender for a long time and I have never tried that activity again. Then my hands swelled and the joints of my fingers felt and looked like they were calcified when I became pregnant. That went away too; then another child was born, and at my 6 wk visit, my OB said, “Don’t worry, you do not have Lupus, your blood work is fine.” I thought he had the wrong patient! Of course, you can guess the Dx. in each instance: jogging,, pregnancy, and fatigue as a new mother….after the next baby came, my internist told me my blood work was fine…but he said, “I think you are allergic to your own body,” and he wrote a scrip for an antidepressant. (Which I threw away on my way out of his office.)More than twenty-five years later, I was finally Dx with RA after the MRI I had requested repeatedly, was finally done, and showed the joint damage in almost all joints. I had rods placed in my back shortly after that. I failed a year on Humira (which was very helpful, until I developed a melanoma.)During that time, my legs were treated in OT, and wrapped for interstitial edema,(I measured my ankles, calves, and thighs over a weeks time to convince my rheumy of a 4-8 in. difference from nl.)Then I was started on Lyrica by a new rheumy to treat FM, and am now waiting to see what is suggested to treat RA, as I do not know what could possibly be next. This doc touched my shin on his way out of the room after the initial appt. and decided, “There is some swelling there,” I could not tell.

    Reply
  • May 21, 2011 at 6:15 pm
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    I cannot get off of this site! So much help is here…thank you Kelly, and everyone in the RA family!
    I complained for years literally, about pain that followed my ribs…very specific ones, and it was blamed on FM. Curiously the the most recent flare of pain from beneath my left shoulder blade follows a rib right around to the front, and has nearly disappeared since I began the Lyrica.
    Interesting idea about measuring fingers as well, although I have always just gone by whether I could wear my rings or not…my finger joints lock up too…all of them, not just ring fingers or thumbs. Especially during the night. I have braces to wear at night, but they do not support the joints that lock.

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  • May 23, 2011 at 8:56 pm
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    I have significant swelling in a few fingers and a wrist, but like you mentioned in your story, much of my swelling happens “in the back”. The palms of my hands will swell, the back of my knees, and so on. My thumbs will ache and creak with no sign of swelling. My rheumy won’t even slow down long enough to consider them. He’s only interested in the swollen joints, and if I don’t happen to have any on the day I see him he begins to question his own diagnosis of RA. He even went so far as to tell me he isn’t interested in my pain, his focus is on getting the RA under control so I don’t become crippled. While I appreciate the concept, I would also appreciate some pain relief. I’m still waiting for that help.

    Reply
    • May 23, 2011 at 9:38 pm
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      Oh Rebecca, Pain relief is something you deserve – any human being does. We don’t even let our pets suffer needless pain. If there’s not an RA treatment that works for you, please ask about pain relief. If your rheum doc does not provide that, you can try a pain specialist or even your general doctor. I hate that so many of us suffer so much when there may be help available. I do understand being made to feel foolish for asking and having him only interested in the swelling, as you say. However, I hope you will request what you need until you have it.
      As far as “he questions his diagnosis” when your swelling is not present in front of him: Thank you for speaking up here. I hope that many doctors will read these entries and be educated. This problem may be the biggest problem with RA – besides needing better treatments – that needs to be fixed.

      Reply
  • May 26, 2011 at 8:53 am
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    For the two years I have been diagnosed with RA some of my most painful joints have been #1 my hips, #2 shoulders & collarbone area. I’m sure a medical test like an MRI or ultrasound would show swelling but it’s not at all visible to the naked eye. During the past several months my ankles have ballooned with swelling all around the joint like in a circle. My shoulder still hurts much more than my ankle. I keep asking people if it looks swollen because if my ankles swell that much I feel like my shoulder should be huge. I do get swelling on the insides of my palms also, pretty much a constant low grade swelling.

    Reply
    • May 26, 2011 at 9:18 am
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      Do you take pictures?

      I’m pretty much the same as you now, Ruby. Swelling on knees and ankles comes and goes over the yrs. But my shoulders are the worst & you can’t even see it! The Dr. Perv last week said my shoulders are “fine because they aren’t swollen,” but one woman told me that her doc said he never sees swelling in shoulders externally – this is so even though she had surgery on that shoulder & they saw the RA damage “face to face.” And constant low-grade inflammation all over – puffiness noticeable to me since I’m thin and have only lost weight. The one good dr I saw did see it too.

      Reply
  • May 28, 2011 at 2:00 pm
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    OMG!!! Why haven’t I seen this until now!! I am having so much touble with my Rheumy doc!
    The comment about needing Antidepressants is so familiar to me… I am in counciling for my “Pain” supposingly. I’m telling you, he just thinks I’m a quack!! Now this proves it!!! I’m such an idiot to think maybe i’m just over reacting. I am definitely showing this to him and see what comes of it. After that, I guess it’s back to the drawing board. 🙁

    Reply
  • June 1, 2011 at 1:48 pm
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    Heard the above for 4 1/2 years before I got a diagnosis. My last doctor offered me an anti depressant b.c they thought I had lost my mind. I hurt all the time regardless of my labs or my sero negative status. Took my new Rheumotologist 45 minutes do diagnosis my RA. Saw the last doc for 4 years…he said “if you can go to work, your pain is not that bad’ left mad, discouraged, but more determined to get answers. Thanks for having this blog.

    Reply
    • June 1, 2011 at 3:54 pm
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      They have no idea what it is like to have to go to work every day in pain. How much harder, slower and altered things are for you just in order to be able to work. And you work so that you have the money/insurance to get treatment…just so you can work…just so you can get treatment. They do not understand the cycle. And then some can still work, albeit in altered mode at disadvantage, but hurt even worse when they get home and try to rest, only to be in more pain. No energy for anything else necessary, much less any social life. They just have no idea unless they’ve gone through it themselves.

      Reply
  • June 7, 2011 at 12:48 am
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    I am currently living this. I am not yet diagnosed but have an aunt with RA joint pain in hands feet shoulders and the only swelling is in my hands at the base joint of index and middle finger. That swelling does not go down even now that I am taking diclofenec. My blood tests and arthritis markers are normal I don’t know what to do next I have a referral but they haven’t provided a date fir the specialist yet. Not even sure if my doc will triage on high importance. I am 44 yr old female v

    Reply
  • June 16, 2011 at 12:42 am
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    For several years my ankles swell so much to the point that I had to buy extra wide shoes.The Doctors run all kinds of test (except one to detect RA)but,I continued with the same problem.Then I started feeling unbearable pain on my legs, then pain on my right knee.At this time I consulted an Orthopedic Doctor run several tests including the one to detect RA,it came back negative,but I had severe OA on my right knee and a thorn meniscus which he repaired. After the operation I continued with severe pain on my left knee and swelling my legs were so swollen that I develop a rash because my skin had stretched so much. I my last visit to the Ortho he attributed everything to my “weight”.At this time my right wrist was swollen and hot and needles to say it hurt so much. I was feeling worst instead of better.When I wasn’t able to walk and the left wrist started to swell I made an appointment to see a Rheumatologist the RA factor came positive she said that I have an aggressive type of RA also gout and severe osteoarthritis. The Doctor prescribed several medications including Prednisone and MTX the pain and swelling have subsided.

    Reply
  • July 2, 2011 at 10:04 pm
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    1 Experiencing cyclic swelling of hands and feet, but not joints and not water retention just inflammation. No pain or issues with the joints but the scan shows mild deterioration of hands feet and knees ( no issues with knees) In December Rhematoid factor was 46 and ANA negative
    In May 17 in response to Pain and Swelling Rhematoid factor 83 and CRP is 14, Sed Rate Normal, ANA 1:40 homogeneous. 3 weeks later 6/6 bloodwork repeated with more tests, but CRP normal at .77 (rheum said it shouldn’t go down that fast) Normal Sed rate, Normal ESR still have cycling pain and swelling with an Anti CCP of 250 and rhematoid factor of 72. Did not start treatment until after this. Hope this helps the survey.

    Reply
  • July 5, 2011 at 11:58 am
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    Kelly,

    My husband directed me to your blog the other day and though I have only read a few of your posts so far, I completely understand your frustration. I have dealt with joint pain and stiffness for the last 8 years. It wasn’t until 3 years ago that I was sent to a Rheumatologist who concluded I had RA even though I didn’t yet show all the signs or have all the right tests turn positive. I was lucky. I had enough of the symptoms, becoming progressively worse, for him to be convinced (after eliminating other ailments like Lupus and Parvo). I am blessed that my RA is moderate and I get by on Naproxen and Plaquenil alone. When I have a flare-up, I have to take a heavy dose of Prednisone for 10-14 days.

    So far, I only get mild to moderate swelling. At worst, it is just enough to keep me from being able to take off my wedding ring if I don’t catch it soon enough. I do get red, stiff, painful joints in my hands, and stiffness and pain in my wrists, knees, ankle, and toes. I never have tenderness when the doctor presses on my joints though. For this reason, I fear changing Rheumatologists with my upcoming move because I don’t want them to press on my joints and say I am fine because it doesn’t hurt when they touch me, only when I try to move. But I won’t let it hold me back. I have suffered in pain for too long accepting the “there is nothing wrong” answer or being told I need more sleep or any number of other answers for my pain and lack of mobility.

    As for labs, my CRP usually comes back normal. Twice it came back borderline. My ESR is almost always high, but it goes REALLY high during a flareup. My WBC is normal when I am “in remission” and always high during a flareup.

    There is sooo much more I could say, but this will turn into a novel if I don’t stop now. What I really want you to know is that you (and your readers) MUST advocate for yourself! If you don’t agree with a doctor’s decision or recommendation, seek another opinion. It is your right as a patient to be comfortable with the treatment and diagnosis. The most effective way to do this is to document everything and make sure you do your own research (just remember, not everything on the internet is correct). Doctors are human too. They do not know everything. That is why they call it “practicing” medicine.

    Reply
    • July 5, 2011 at 6:10 pm
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      Nice to meet you Alicia. Enjoyed seeing your comments & your blog.

      Reply
  • July 23, 2011 at 1:15 pm
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    Hello, My name is antoinette I have been struggling with DX for 3 years, My local ruemy DX RA 2 years ago Sero-Negative RA, But when my symptoms did not conform to his RA DX is started question If I have even have RA. My symptoms Wrist, hands, fingers, ankles feet, back and hips, he would say I don’t see a lot of swelling and your pain seems to be bad when the swelling is not, also RA does not effect the back or hips. So he stopped all RA medication 3 months ago and refereed me to MAYO, this 3 month have been hell so much pain, swelling, and stiffness and now my elbows and knee are involved. The RA Dr said with out a doubt I have Sero Negative RA (I can see it in you hands dear)

    I dont have a lot of swelling but I have sever pain and stiffness 24/7 yes it is worse when I awake but really its bad all day so its hard to define morning stiffness for me.

    I am so upset that I have been off all treatment for 3 months and not my knees and elbow are effected.. All because I didnt have significant swelling in HIS opinion.

    Reply
    • July 23, 2011 at 1:53 pm
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      First of all, thanks Antoionentte for posting your story here since it can encourage others that they are not alone. I’ve seen this happen to several patients. A few have had their diagnosis or treatment “taken away” by a rheum doc when their swelling or blood tests went down, but their other RA symptoms did not get better.

      The only thing that can be done is to find another opinion. Are you able to go back to the one who diagnosed you or find another one? There is a wide variety of opinion & methods of practice with rheum docs. Some require swelling but others know better. Some require blood tests to be positive, but others know that’s wrong. I’m so sorry you are going through this and I hate the idea that you could have additional pain or damage because of someone’s mistake. Don’t give up. There are some doctors that patients are recommending here and here in case one of them is near to you.

      Reply
      • July 23, 2011 at 7:13 pm
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        That is so like my story! My first rheum wouldn’t even DX RA because i had no swelling in my hands and because RA does not affect back or hips. I’m so tired of hearing that! If it didn’t affect my back or hips, then why have my rheum meds helps slightly!

        I pray you go see another rheum. Not all are closed minded. Thank you for sharing your story.

        Reply
  • July 28, 2011 at 4:06 pm
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    What is CRP? I have just looked at my blood test results book and that column is blank. i am 4 weeks into having gold injections so have blood tests weekly at the moment.my ESR level was 25, its now down to 19. my practice nurse tells me 25 is low so why do i feel so much pain?is my pain threshold low? (im in uk by the way.)
    xx tina

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    • July 28, 2011 at 5:07 pm
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      Hi Tina, the CRP is also called C-reactive protein. There is a Tag here on the blog that you can use to look up the posts that talk about it. It’s one of the tests sometimes used to indicate inflammation, along with ESR. CRP has been shown to be largely dependent on your genetics. You just click on the arrow where it says Tags List of Topics & then click on CRP & it shows you a list of posts here about it.

      Only you know about your pain threshold, but I CAN tell you that patients constantly tell me that when their blood tests improve, their docs/nurses expect them to feel better. Patients often do not & there is no reason to believe that these tests will always relate to the amount of pain that patients experience since the RA symptoms do not seem to be dependent upon these tests in any real way. The tests can improve & there is still swelling, or fever, or stiffness, or erosion or tendonitis, etc. You have hit on one of the most important things that has been made clear here over the last couple of years.

      You should probably look at the RA Pain TAG too! There are several discussions here on the issue of pain tolerance & perception of it by drs!

      Reply
  • July 28, 2011 at 10:04 pm
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    Googled “RA swelling” tonight to find pictures for comparison and came to RA Warrior article on this subject. Since my current flare started 3-4 months ago, I have swelling over palms of my hands, base of thumbs, wrists, elbows, knees and ankles. The more I move or use hands/feet, the worse it gets. My husband can see it without any problem. When I mentioned it to the Rheumy at my last visit, she didn’t even look for it. Her one concern was that my SED and CRP tests were both normal (after being on Prednisone for 60 days) – and she didn’t understand how my pain level could be so high. Maybe doctors need to realize that lab tests aren’t infallible, patients don’t imagine swelling, and we know pain. Unless they spend a day inside our bodies, they don’t get it.

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  • August 27, 2011 at 9:16 am
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    Thank you so much for this post. I’m 21 years old have been given the run around by doctors. About 11 months ago I started getting pain and swelling and stiffness in my fingers and knees a whole number of other symptoms that my GP says are very common in autoimmune diseases. I was being treated with naproxen until I could get into see a rheumatologist. I flared up really badly, my fingers were like sausages, I couldn’t straighten my knees because of the swelling. My joints were putting off a lot heat and were really red. I was really unwell. My GP (with the advice of a rheumatologist) gave me a month course of prednisone which really knocked it on it’s head. I’ve been off prednisone for 2 months now and my symptoms are slowly creeping back, but the amount of swelling hasn’t returned. My doctor said she can feel fluid under my knee caps but it’s not visible like before. I’m now getting pain in new joints (feet and shoulders).

    I got in to see a rheumatologist a month ago and she said that if she couldn’t see any swelling she couldn’t make a diagnosis. She was actually terrible, she found an excuse for every one of my symptoms and none of them were the possibility of it being arthritis. She said my rash (which I now know is vascular) was eczema and that my knee problems were from a mechanical problem (which has since been ruled out and the fluid under the knees confirmed by another doctor).

    I’m off to a brand new rheumatologist on Wednesday, thank goodness.

    So in answer to the questions,

    1.RA swelling?
    No not all the time. It can come and go. Some days I can see it and not feel it and vice versa. Not so much now since being on prednisone. Yes I get pain and creaking with obvious swelling. I actually have joint pain and swelling dating back to when I was 8 years old. Back then it was only 1 joint at a time and it’d last for 6 months then disappear for a few years and return in a new joint. Doctors didn’t know and didn’t test me for JRA which I’ve now been told I should have been. Now the pain and swelling is in my knees and fingers. I don’t know about my shoulders because I can’t see them but they feel exactly the same as my swollen joints.

    2.RA Inflammation markers
    This is probably why I’m not being taken seriously. My blood tests in the past 11 months have shown 3x weakly positive speckled ANA and two slightly elevated ESR. Everything else is normal. If what is going on for me is RA it’s definitely not showing it in the blood tests!

    3. Doctor’s comments
    Yep, rheumatologist number 1. I’ve had GPs who are more knowledgable about this than the rheumatologist.

    Sorry to prattle on. This is so frustrating and I’m just struggling a lot. My GP is really good and she has written everything I mentioned in my referral and that she thinks I need to get off these anti-inflammatories and on to a DMARD before I have no stomach left!

    Thanks for listening and for posting this so I can read everyone’s replies

    Reply
    • September 2, 2011 at 11:16 pm
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      Sarah, I’m a couple days behind on replies so I hope you are reading this! You didn’t prattle on. Your comments will be helpful to others! You sure have it together for being 21!

      I am always stunned at this – no matter how many times I hear it or experience it – that there are so many of these rheumatologists who will actively do what you described: try to tell you there is an excuse for every symptom that is NOT RA, even after an RA diagnosis. I hear it w/ JRA too. What makes them do this? It’s something I’ve been studying too. 😉

      I hope the new rheumatologist is better. It takes a lot to go in there and describe your symptoms when the last one “explained them away.” There is also no way they can definitively judge the RA visually if you are taking pred or a dmard that is suppressing swelling either. Have you seen this with pictures proving that disease activity continues when doctors judge the patients to be in remission? http://www.rawarrior.com/rheumatoid-arthritis-swelling-take-two/

      Also, you might want to click on the Tag in the Tags List for CRP – it’s the other blood test (along with ESR) that they use for inflammation. There is new genetic evidence for tendencies for low blood levels – it’s all interesting – there is no definitive blood test for disease activity. There is also a Tag for Blood tests.

      Reply
  • September 10, 2011 at 8:08 am
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    I have only had swelling of feet and ankles and no where else but, I DO have pain and stiffness in my hips, knees, shoulders and yes feet and ankles. If they go by swelling for pain I am going to be out of luck with them. I just don’t get a lot of that except in those areas I mentioned and even then not all the time. It still is painful though.

    Reply
  • September 13, 2011 at 1:28 pm
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    I have swelling at times. Every joint in my body has been and is being affected. I am pain every day of some form. Not one of the 5 Rheumy’s I have seen over the last 9 years since diagnosis has ever told me or given me any tests results. My mobility has been hit, my energy level has bee hit. I have already this year have gone through my first RA related surgery. My right foot, heel, and ankle. NExt is the left foot, then my wrists. I have been told I have the aggressive for of this lovely disease. With that I have also Diabetes type 2, Asthma, Thryoid disease as well. I have been getting upset this last year as my back and neck have been added to the list as well as my hop and leg joints. I hate hearing the doctor ask me any swelling? REALLY! I am in pain, does it matter if swelling? Does that make your job easier so you don’t have to dig any further!? I feel that way a lot. I would love to find a doctor like I had that retired. Caring and concerned, and most of all just didn’t go ok, just live with it like I hear now. I know they have certain protocols to follow, but this disease from day one has never followeed a book with me. I have had a Rheumy , more than one, say I don’t know why you are in pain when there is no swelling. Damage is being done swelling or no. I have learned that with my walk with this so far. Sad that we have each other but not the doctors who should know and should understand more than we are ourselves. It will be nice when the day comes that that happens for us as it has happened with so many other diseases. Thanks for sharing this blog!

    Reply
  • September 13, 2011 at 1:34 pm
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    I’m so glad to see you research this point. I have questioned why I can be so stiff and have pain when there is little visible swelling and no red/inflamed looking joints. But I keep reminding myself that I no longer wear jewelry because it gets so uncomfortable… due to swelling no one can see. My CRP continues to be elevated, but does jump around. My ESR has improved and may be nearing normal for my age… my Drs disagree as to what is normal.
    I recently asked my Rheumatologist about how we will know I’m in remission, and his response was labs and absence of pain. I got a good one who hears me and works to help me find some balance for my RA and Fibro issues.

    Reply
  • September 13, 2011 at 2:27 pm
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    My RA started late 2008 in small joints, fingers, wrists etc and quickly progressed to my knees which became swollen. Steroid injections gave relief for two months and I was put on MTX and hydroychloroquine. Later joint swelling turned out to be caused by amlodipine blood pressure tablets which were changed.Gradually improved and now lead normal life with a few minor aches and pains. ESR and CRP mainly borderline at 11 and 8 respectively but CRP fluctuates quicker than ESR and shows higher occasionally showing presence of some other infection. Both CRP and ESR should range below 10 depending on age and other factors. For me 20mg MTX weekly is a miracle cure with no side effects whatsoever

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    • September 13, 2011 at 3:23 pm
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      wonderful to hear. I love to tell new patients stories like this so they see there is hope – especially since they hear horror stories about that medicine.

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  • September 13, 2011 at 3:24 pm
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    1. I have not yet seen any RA swelling yet I have had substantial pain.

    2. Other than positive rheumatoid factor I have had “normal” sed rate and CRP results while I have been in pain.

    3. My doctor is great. She diagnosed me with RA based on x-rays, family history, symptoms, and positive Rheumatoid test. She does not question the lack of swelling or inconclusive test results.

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    • September 13, 2011 at 4:44 pm
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      Thanks for posting Andrea. Hearing about good docs is very encouraging to other patients!

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  • September 13, 2011 at 6:45 pm
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    I was told by my Rheumatoligist last month that she couldn’t do anything for me because I had no joint swelling or damage but at least pain won’t kill me!

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    • September 13, 2011 at 7:20 pm
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      I guess you know I think that’s ridiculous. These guys who say these things need to be re-educated.

      Reply
  • September 13, 2011 at 11:51 pm
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    # RA swelling?
    My first real flare of RA= I had swelling really bad in each and every knuckle on my fingers. My index fingers on either side usually swell up if all my knuckles don’t. A lot more days than not. The swelling isn’t nearly as bad as it was. During my first initial flare (beore I was prescribed medications) now that I think about it, my knuckles and fingers had become extremely red from the swelling. I kept saying I had “sausage fingers”…because my skin looked stretched out from the puffiness – i had fat fingers. lol That hasn’t happened since. BUT that was literally all last winter…so we’ll see what happens this winter!

    # RA Inflammation markers
    My doctors have never told me my numbers and I have never asked. I went to my primary doctor earlier this year complaining of joint pain-“I’m only 23!” I cried. My PCP did some blood work and a week later I received a call about my “RF factor” from some rheumatologist’s office. I eventually saw the rheumatologist and he said I had RA (the first freaking appt!) and started me on plaquenil that day.

    # Doctor’s comments

    Sometimes I can hear the nurses/doctors talking about my blood work and #’s through the door before they walk in but they never discuss it with me in person. I never asked though. I don’t feel like I need to- I always feel like crap and I’m such a classic case. (fevers, loss of appetite/weight loss, swelling and redness in hands, constant flu-like feeling, live off of prescription pain killers, and I have chronic anemia) My x-rays look “good” so far though I feel like I’m in a slight flare more than good days anymore. I feel like I get worse with time, but they just added Enbrel to mix- we’ll see what happens.

    He also keeps prescribing me prozac because I keep loosing weight despite even stopping smoking 2 months ago! The weightloss from RA is not a skinny person’s friend.

    Reply
  • September 14, 2011 at 7:53 am
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    Swelling was one of the reason I went to the doctor and was diagnosed with RA. My hands and feet swell daily, I have gone up a ring size. My ankles are also swollen and stiff, extremly hard to walk at times.

    Reply
    • September 14, 2011 at 9:37 am
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      Hi Brenda, your ankles sound just like my knees.

      Increased ring size is very common – and shoe size and wrist size. But it’s often not viewed as swelling by doctors. My own ring was cut off and I had to buy all new shoes in larger sizes – cannot wear any of my watches – even though I’ve lost weight in typical RA fashion. I sometimes don’t realize how much of that kind of “non-dramatic” swelling there is unless there is a very odd day when it is down. That happened recently for 2 days – I could not believe how skinny my fingers were; I’d forgotten. It’s gone now.

      So there are various degrees or types of swelling. And as the new version of this post shows, radiological imaging shows that there is actually swelling even when it’s too subtle to be obvious from the outside.

      Reply
  • September 14, 2011 at 10:02 am
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    Q. RA swelling?
    A. My swelling is mild. Mainly my fingers, although 1 rheum said there is none (then why can’t I wear my rings?)
    Q. Do you have it all the time?
    A. I do not.
    Q. Does a joint ever hurt and creak without much swelling?
    A. All the time. It creaks, grinds and hurts.
    Q. Has your pattern of swelling changed over time?
    A. Yes, it’s decreased with my meds to treat RA

    RA Inflammation markers
    Q. Have you ever had a normal CRP blood test result while you still had RA pain?
    A. Yes, last 2 visits to my rheum.
    Q. Do you ever have normal ESR / sed rate result while you still have RA pain?
    A. Yep, last 2 visits to my rheum.

    Doctor’s comments
    Q. Has your doctor ever told you anything similar to…? “I don’t understand why you say it hurts because I do not see swelling;” “Perhaps this pain is due to something else because your inflammation is under control;” or “Your joints look good. Your RA is under control. Maybe you need an antidepressant or….”
    A. YES! I was totally floored when she used the first 2 statements you suggested. I could not believe that she could think that my JOINT pain is NOT related to my RA because my blood work is normal. I already know I need an antidepressant but I can’t take the ones with the pain relieving aid in them because they screw up my blood pressure. And I REALLY hate the “you need to exercise.” and she looks at me in disbelief when I tell her I walk one day and am down for 2 because my joints hurt – all over. And one thing it would have been nice of her to tell me that being in the sun would make my RA flare. Most of the summer, I was walking & swimming w/the kids and in the sun…. UGH

    Reply
  • September 25, 2011 at 3:33 am
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    i have had RA since i was about 13. in the past years i swelled an was stiff an hurt like heck. for about 15 of those i was fine no hurting at all or swelling an not taking any meds.then one day i had to run from a dog .i only made 2 steps my foot felt like it was broke an i never fell. went to the doctor an did xrays an oh my my ball joints in my feet was a mess. come to find out both feet an nkles an knees an my right hip an both of my wrsits showed very nad signs of RA. my ortho wants me to do hip replacement but im trying to hold off im 42.some kind of surgery is going to have to be done on my foot. im taking DMARD an TNF BLOCKERS now. i just caint belive my body is in mess right now

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  • December 7, 2011 at 5:39 am
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    At 11years old when my RA first showed its head i had severe swelling of the knees and ankle. Had bad swelling until i had gold injections then later steroid treatment, but nowadays the swellin isn’t as bad as it once was. when you stare at a joint so often you notice differences and to this day i notice both kmees swell slightly when very painful. i take Celebrex which my rheumatologist tells helps hide swelling so I’m guessing they help with that.

    My aunt who also as RA hates that doctors solely just progress of the disease by how much swelling you get, there’s always pain with or without swelling.

    Reply
    • December 7, 2011 at 8:30 am
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      Your aunt is right. Swelling is not the best measure of RA disease activiity. There is plenty of proof of that, but she is also right that most doctors think it is and that it is sad. And yes, I agree that if you take any anti-inflammatory medicine, it masks the swelling also. You might want to check out the Swelling Part 2 post with some great photos & studies showing that extermal swelling is a poor measure of disease activity: http://www.rawarrior.com/rheumatoid-arthritis-swelling-take-two/

      Reply
  • December 15, 2011 at 5:26 pm
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    I was diagnosed with RA becouse of the swelling in my knees and some other symptomes but my blood work didn’t come back positive for RA. Its been two and half years but the swelling never really completely goes away. They told me that becouse I don’t test positive in the blood that I have a mild case. I would say that my pain is the worst not when the swelling is really bad but when it goes down or when rhw joints that have RA burn. I am scared to tell my doctor becouse I do not know if I want to have my medication changed. Best of luck to you and I hope your internet survey gets people in the medical feild interested enough to do research.
    Erin

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    • December 15, 2011 at 5:48 pm
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      Hi Erin, Of course I can’t tell whether your RA is mild or not; I sure hope it turns out to be for your sake. But there is no way to tell the severity or predict a patient’s outcome by blood tests. Many people have blood tests that are “normal” with the tests available at this point and still have severely damaging RA. I hope you have a dr who treats you based on the RA symptoms you actually have and not on tests that happen to be the only ones available at this point in time.

      Reply
  • January 16, 2012 at 8:08 am
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    Kelly_
    I want to say so much but typing is right out– flaring badly. Had 4 months of Humira ( helped swelling!) everywhere but my hands. Now, 6 weeks off Humira I am in a flare that is sending me to hospital for a pain shot ( and maybe a cortisone shot- though I hate corticos).

    Swelling—as a life-time gymnast, ballerina, spring-board diver, etc., I can differentiate b/w swelling from impact, for example, and RA. RA has, for the past three years, made my swell in areas I didn’t know of. Except hair—oh the irony: my hair has thinned and is falling out. I’m 38, have tried all DMARDS and now take prednisone, Humira and opioids for pain.
    I got married in a size 4 ring. 8 years later I can’t get a size 9 ring on my finger. That change happened in about 16 months.
    God bless you all
    NK

    Reply
  • January 16, 2012 at 8:13 am
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    PS- Despite ungodly CCP, CRP numbers, etc., and a family history ( including my brother, who has RA and AS), I am still seronegative ( despite my last lab that showed a huge “jump” on a graph, but still seems to my rheumy to indicate a seronegative status. I’m beyond feeling “aghast” and praying for some damned truth to emerge from this.

    If other “diseases”, “syndromes”—whatever—can get the right MARKETING to drive research, why can’t we???? This is real, and we need to join forces and demand research, treatment, answers- the lot. Email me if you want to go to Congress. I’ll do it, with cane, wheelchair- whatever.
    Love to all

    Reply
  • January 27, 2012 at 9:11 pm
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    I would love to be involved in your blog…many of the questions/comments pertain to my situation with RA. THAnk you.

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    • January 31, 2012 at 7:21 pm
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      Hi Jenny! I’m so glad you found us. I hope to hear more from you! 😀

      Reply
  • February 2, 2012 at 10:46 pm
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    Hi, I am currently on the diagnostic roundabout and getting frustrated. I have had what could possibly be Palindromic RA for years, with bilateral shoulder pain, foot pain, or hand pain which comes out of the blue, lasts for days to weeks, and then vanishes. No swelling, but lots of pain at times, along with functional decline (I couldn’t walk on my feet properly for nearly an hour each morning when they last flared). Just before the New Year, I began to have poor appetite, nausea, intermittent fevers, fatigue, and have had ongoing hand and foot pain and stiffness. No swelling. Normal ESR and CRP, but a family history of RA.

    The doctors are reluctant to consider RA due to no redness or swelling, and normal ESR and CRP. I was told it was just “wear and tear”, though I have OA in my knees, down to bone, and they only hurt badly when I overdo things, and they never throb painfully in the way my hands and feet can at times. It hurts to have pressure on my hands/feet, like snug shoes, or when I shake hands, but the doctors don’t seem to believe me when I say it does not feel the same as my existing OA. They also won’t believe me when I tell them I almost never swell, even in my severely OA knees (even my knee physio didn’t believe me till he saw me two weeks after major surgery with almost no swelling, and that was only obvious when comparing both knees!). Thankfully I am currently awaiting RA and CCP tests, due to my pushing the issue. So I am (painfully) keeping my fingers crossed that they show something, so I can get a referral to a rheumy without having to push the issue further.

    Reply
  • February 3, 2012 at 10:02 am
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    I have never had any noticeable swelling. Just slight enough to tell my wedding ring was tight even though I had lost 25 pounds. My feet feel swollen to walk on but hard to tell by touch and not noticeable by sight. I was sent to the RD by my GP due to elevated ANA test 8 months ago, RF and sed rate of 0 or 1 each. My RD decided I had some form of auto-immune on the first visit based upon synovitis in my knuckles even without swelling or hot joints and no real pain to the touch. They still don’t have any real serious swelling but the skin over the worst of the knuckles is redder than the rest of my hand. It started as stiffness in a lot of joints but especially my feet, with tendons that felt like they would tear if I moved them when I woke up. The tendonitis feeling spread and I final complained to the GP at a yearly physical.

    I have only had the first ANA test and one other test since (I actually remember which one) come back as slightly positive. All other testing has come back as though nothing was wrong. The stiffness, pain, synovitis, twisting fingers, twisting hammer toes and joint involvement has steadily progressed in spite of treatment. I forgot to mention the fatigue. That has let up a little in the past month but I could still fall asleep at any given time with no difficulty. I feel just as tired after 10-12 hours of sleep as when I went to bed.

    I am up to taking 400mg of Plaquenil, 20mg of MTX and Enbrel injections. Waiting impatiently for the Enbrel to kick in. At my last visit with 3 weeks of Enbrel in me he was curious if I was one of the lucky ones who responded immediately and said he did not want me to cut back on any of the other meds until the Enbrel was working for me. He seems to take me at my word about what things feel like or how I am doing. I called the other day because I couldn’t stand my feet touching anything or just being attached any more. The largest synovitis swelling is in joints in my feet. He called in a 6 day taper of Prednisone starting at 30mgs last night. So far it has cut the morning stiffness a bit and my feet are bearable to have in shoes this morning but that already doesn’t feel like it will last the day. I am thankful to have a RD who believes me and treats me based upon what I tell him, in spite of no swelling and little in the way of positive blood work.

    Reply
    • February 3, 2012 at 11:20 am
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      thank you so much for taking time and finger use to type that out for others here. I know from the feedback that it does provide an excellent resource. I know that dr’s also read some of the testimonies and it may help them also. It is a stunning divide in rheumatological care: the drs who will or won’t treat patients who do not have “obvious swelling” – Surprisingly, I have so much more to say on it even though there has been so much said. There will be a new post soon about what I call our “immune fingerprint” which may be interesting to u & readers of this post.
      Like me it sounds like u do have swelling – just not the puffy marshmallow kind – I have lost 1 lb per year w/ RA and yet have much larger hands – had the wedding ring cut off 2.5 yrs ago from my “insignificant” swelling. We know what my hands looked like before – that is the key. And feet, etc yes.
      I hope the Enbrel works for you!!

      Reply
      • February 3, 2012 at 3:54 pm
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        Kelly, thank you for all of your hard work and all of the information on your website. I am thankful that my RD is one of the good ones. Otherwise I’d have to be hunting for another one or simpley miserable. I am also glad I only have my meds and health to worry about (with RA/RAD that is), instead of what the doctor will or won’t do. Any time I call he calls me back within a few hours maximum. I’d be quite upset to have my ring cut off, after it started getting tight, I seldom sleep with it on, I figure at least if I’m awake I’m more likely to notice before it’s to late.

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      • June 16, 2013 at 8:18 pm
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        I have a new confession, as of a month ago, I now have some swelling in my hands, feet, ankles and knees. My knees and hands are generally warm and my knees at one point felt burning hot to the touch (it completely freaked out my wife). Also, the Enbrel did nothing (only noticed a slight change after quiting, after taking it for 4 months). After about three weeks on Humira it felt like a miracle. Unfortunetly, after stopping the prednisone completely it didn’t feel like such a miracle anymore and now after nine months on Humira I am thinking it might be time to try something else, again.

        Reply
  • February 3, 2012 at 11:52 am
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    “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….”
    Wow! This is exactly what is happening with me right now. While I am telling my rheumatologist that my joints HURT, every single one is screaming with pain, she is digging her fingers into my soft tissue (nowhere that I was compaining of pain) & asking if it hurts. Well of course it hurts, it would hurt you too. She didn’t even look at my joints, except my ankle. She keeps saying “but do you have swelling?”. I never have had a huge amount of swelling. My ankles, hands, & collarbone areas are puffy but not usually huge. But the pain in my joints is real. I have even had to stop all knitting & crotchet 🙁

    Reply
    • February 3, 2012 at 12:24 pm
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      Ruby be sure to read the part 2 for this swelling article – the link is right at the end of part 1. I’ve learned a lot from patients and research over the last 2 years since I first wrote this.

      Reply
  • February 3, 2012 at 11:56 am
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    Yes I have had my dr tell me I am not having a flare because he can’t see it in my blood work that he took 3 months before, I have had that same dr say well you are swollen because you ate salt, I have had that same dr tell me that I have swelling because I missed a dose of one med or another, I have had that dr tell me that I am depressed and to take this antidepressant instead of the pain medicine I asked for.

    Reply
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