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

  • February 23, 2010 at 8:37 am
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    Hi there. Glad to answer your questions.

    1. Excuse my long-winded answer. This started in April 2008 in my left big toe. The swelling/redness/pain was intense and I thought I’d broken/dislocated it. I was on holiday at the time in Barcelona so could do little about it. By the time I’d gotten home it had more or less gone. In August 2008 it returned with a vengeance to both big toes. Gout was suspected and dismissed.

    In February 2009 swelling and pain in both thumbs and index fingers meant I couldn’t hold a knife/fork. It went after a couple of weeks then came back in my both middle fingers and knuckle joints. It went in my right hand but stayed in my left hand hasn’t ever gone away. The swelling was intense at first and I thought my finger would burst! It’s constantly swollen but varies day by day. In a year it’s never regressed to normal size although sometimes comes close.

    2. My blood tests show nothing; no inflammation, no RA factor. An ultrasound scan showed fluid and swelling and sealed the diagnosis.

    3. Yes. The swelling has never been as intense as the first time I presented. But there is a strong correlation between the severity of swelling and pain levels.

    Hope that helps. :o)

    Reply
  • February 23, 2010 at 8:39 am
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    Hello, in answering these questions I will have to say,I have had all of these things. Swelling with NO pain. Pain with NO swelling and my Dr.Whom will have to remain nameless. Has told me sooo many different stories about my RA that its not even funny! One time he told me the pain in my chest was from the RA in my collar bone. About a year later he told me that he wasn’t sure what the pain was from and had me get some heart tests done. Which all came back good thank GOD! But it scared me to death even tho I already knew it was from the RA. I always try to take some one with me to my appointments because alot of times I don’t remember what he says and he will almost always tell me contradicting things. I honestly don’t think he even knows whats going on with this RA stuff!! We need Dr,s that HAVE RA themselves to help us with it.Both my elbow’s are swollen with very little if any pain. They have been for a LONG LONG time. I was lucky tho in that my very first blood test showed that I DID in deed have RA. It was one of the highest counts he said he had ever seen!! Well at least when I do some thing I do it GOOD…LOL You have to be able to laugh…..if not you will cry all the time!

    Reply
  • February 23, 2010 at 8:41 am
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    I was just diagnosed in December, so I may not have a lot of history yet, but here it goes.

    1. Before I was diagnosed, my feet swelled to the point that I needed to go up a size in shoes. I thought I was going flat footed or something, but once I started on the meds, my feet went back to normal. Otherwise, whatever joint seems to be bothering me the most tends to swell. I have joints that pop pretty frequently without immediate swelling and some that will hurt with little to no swelling.
    3. No normal tests yet.
    4. No such comments from my doctor.

    Reply
    • February 23, 2010 at 9:00 am
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      I have a lot of painful popping too. You’re right – it’s still early for you – Good luck for remission.

      Reply
  • February 23, 2010 at 8:48 am
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    The only minor swelling I’ve noticed is in my fingers and hands. My elbow occasionally turns red and hot…but no real visible swelling. As for the RA markers? My primary doc only said my ANA was positive with a freckled pattern and referred me to a Rheumy. My Rheumy initally told me that I had a classic, rip-roaring case of Fibromyalgia that was severe because it had been left untreated for so long. He swore I did not have RA or Lupus and most people had positive ANA’s…the freckled pattern didn’t mean anything even though my primary referred me on that basis and said he thought I had Lupus. Rheumy took tests and said I had RA. He acted smug like he had suspected it and warned me?! But thankfully he never discounted my pain or he would’ve had a pretty brown purse with diamond studs upside his head. 😀

    Reply
  • February 23, 2010 at 8:58 am
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    Great post and I am interested in the responses. For me:
    1. Swelling since Day 1 eight years ago. There is always swelling some place in my body, but usually hands, knees and ankles. Swelling is a MAJOR symptom for me.
    2. I have had a somewhat “normal” ESR when the psin was still there and even visible swelling. Same with CRP.
    3. My doctor is passionate about making sure each patient has their own RA story and makes sure I do not compare myself to someone else who may have more visible damage. She checks for swelling and tenderness. I don’t know that I would be well served by a doctor who may be judging me, swelling or no swelling.

    Reply
  • February 23, 2010 at 9:09 am
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    I had swelling in June with my first flare which was what caused the orthopedist I was visiting to order blood tests and ship me to the Rheumatologist. The combo of swelling and labs made for a quick diagnosis but since then (I have mentioned this on your facebook page) I am rarely able to discern visible swelling. I have not been able to wear any of my rings since June so I know my fingers are a little swollen but some of the worst pain i have (like recently in both knees) was not accompanied by any visible swelling. I am super super skinny so I would be able to see it pretty easily and I kept concluding well this must be an injury or something other than RA since I did have a strong impression that swelling was a must in ruling in RA related pain. Sometimes i have a few fingers and one toe that are swollen with no pain and just stiffness. The sharpest pains I have rarely have swelling. When I do have swelling in my hands I tend to have repeated involuntary muscle contractions. My hands will clench and i have no idea what that is about, its painless but uncomfortable and causes me to have poor control over my hands while this is happening. This whole swelling issue has had me questioning my dx for months and drives my husband nuts since he is convinced its irrelevant and I should stop looking for it, despite his not knowing any more about RA than what we hear from my rheumatologist!

    Reply
  • February 23, 2010 at 9:11 am
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    1. Some swelling, especially fingers, wrists and ankles. I hadn’t thought about it before, but I believe I had more swelling early on. Pain and swelling are not closely correlated.
    2. Yes, have had significant pain while testing negative.
    3. Doctor said RA diagnosis was done “by exception.” He couldn’t find anything else causing it. Symmetrical symptoms was part of what led him to diagnosis.

    Reply
  • February 23, 2010 at 9:15 am
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    When my RA first presented I didn’t really have any swelling and ALL of my blood tests were normal, but I was in excruciating pain (is that catastrophizing? :razzmad: ). Even during an active flare now, my SED rate will be slightly elevated, but still within normal limits. In fact, the only time I have EVER had an elevated SED rate was when I was in the hospital for pancreatitis (WORST pain EVER!). I do have swelling sometimes – mostly in my wrists, ankles, and knees. It’s funny that you used those doctor quotes, because the last two are almost exactly what my rheumy said to me at my last visit. She diagnosed me with Fibromyalgia, which I do believe given the tender points and random muscle pains I have and the fact that the meds have helped that. But the RA pain and fatigue is still ever present. Today, for example, I had to keep sitting down to rest while getting ready for work. Getting dressed, putting on make-up, pulling my hair back…each part of the routine wore me out and caused so much pain.

    Just like the “RA starts in the hands” conversation, all of this makes me wish they would just throw the textbooks out and start over by teaching rheumys that RA affects every single person differently and it can present in several different ways such as A, B, C, etc.

    Reply
  • February 23, 2010 at 9:19 am
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    I have continuous swelling, pain and stiffness. I have occassional elevated CRPs. Never high ESR. Always high RF and anti-CCP levels. Swelling in my wrists and knuckles never goes away, I am afraid its permanent damage. My toes and feet swell on and off. Pain is constant in my feet. EMG says no nerve damage, Podiatrist disagrees and says there is nerve damage, thats why I have pain. So much arthritis in big toe on both feet that I am unable to bend them and use them in the proper method they are used for, so I use my smaller toes to walk and they can’t handle the pressure (due to the bones being smaller and not meant to handle the pressure that the big toe is suppose to be used for). Knees look horrible, won’t even wear a pair of shorts, I wear what we call “claim diggers”, they are the clothing that is between the length of a pair of paints and a pair of shorts, can’t think of the proper name at the moment. This is what I am told is called “brain fog”. When you can’t think of the word you want to say or forget what you went into a room for. The knees stay swollen as well as the wrists and hands permanently. Feet and ankles are periodically, although they hurt constantly.
    Yes I have been told I need an anti-depressant.

    Reply
    • August 31, 2013 at 11:22 pm
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      hey … my name is leisha and im 17 years old when i was 11 years old my body started swelling up and my joints was hurting when i turned 15 years old i found out i have adult rheumatoid arthritis … so everyday its hard for me and painful.. soo i know how you feel…

      Reply
  • February 23, 2010 at 9:30 am
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    I have some swelling, but usually not enough that one would notice. My ring is very tight some days, and some days not.
    My rheumy can usually palpate and find swelling. (and pain, although not always in the same places) Sometimes I think there is more pain without swelling because there is no cushion when she is palpating—and that hurts! I have some pops, and they are uncomfortable.

    I have never had a “positive” blood test. Most of the time my results are very low. No correlation with swelling or how I feel so far.

    My rheumy’s story about what’s going on changes too. The swollen knee is bursitus. The saddle joint at the base of the thumb (both thumbs—symetrical) is osteo. If I mention pain she will often say, “I could inject that”. Which she knows I don’t want. Followed by, “someday we will have to replace that”. (I want that less).

    But she doesn’t deny that I have RA.

    Reply
    • February 23, 2010 at 7:34 pm
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      This is interesting – people using this phrase “the rheumy’s story is” …Do you believe those suggestions? Sounds like you have doubts.

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  • February 23, 2010 at 9:53 am
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    #1 – I used to have swelling in my feet and legs all the time. My toes would look like little sausages. Since I’ve been on the Enbrel, the swelling seems to be better, but the pain is still there. Just last night, my middle finger was really hurting at the middle and upper joints, yet there was no swelling to be seen. The shoulder I had two surgeries on will vary between the swelling – it’ll puff up at the scar really big and hard on one side of it – other times no swelling – either time the pain is still there.

    #2 – YES! I have still had pain with normal CRP & ESR blood tests. Crazy, isn’t it?

    #3 – Thank God my Rheumy has never told me anything like you mentioned. He never downplays or ignores my pain when I tell him where I hurt. He documents everything I told him and based on that, makes his recommendations and rates my RA severity. I don’t know that he’s ever rated it anything lower than moderate-severe.

    Thanks again for all you do, Kelly. It really feels good to have someone like you validating what I’ve been feeling…

    Reply
  • February 23, 2010 at 10:20 am
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    1. Ra Swelling: swelling comes and goes from various joints. Only real visible swelling is in hands and feet. However, joint pain and stiffness in joints not necesarily swollen. I haven’t really noticed a pattern to the swelling, it just seems to move through to different joints from time-to-time.

    2. Inflamation Markers: My SED rate and CRP have never been anything but normal. This actually delayed my diagnosis. The first rheumatologist I saw refused to diagnosis me with RA because neither of these 2 markers were present.

    3. Dr. Comments: The first rheumatologist told me I had fibromyalgia and that I would always have joint and muscle aches. My current rheumatologists always asks about where the joint pain is and where I have seen swelling prior to exams of joints at each visit. He will notate the difference in any visible swelling vs. what I say. He also checks range of motion, etc. in major weight bearing joints. Not really sure if he does anything with this but he hasn’t told me that I need antidepressants yet!
    My next visit with him is on March 25th. I will be extra observant at this visit and I will ask him a few questions and get back to you!

    Thanks Kelly!

    Amy

    Reply
  • February 23, 2010 at 10:22 am
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    I get some swelling, mostly in my hands and wrists. Had some in the ankles a few times. My hands will get red and swollen when I use them a lot, say for example, just cleaning the bathroom sink, they will swell up. My RA Factor was positive, but a low number. My sed rate was normal. I am having all the blood work done again next week, just because it has been one year and I wanted to see if any changes, worse, better, same. Don’t think it will matter though. All my joints hurt, some swell, some don’t. Sometimes it just feels like swelling on the inside. I get the popping too, especially in my shoulders. A friend was next to me once when it popped really bad and she thought my arm broke off. LOL Sounded like a branch snapping. Sometimes it feels like shoulder are swollen, but not sure, how do you tell if shoulders are swollen? Had shoulders xrayed last week and was told NORMAL, that was radiologist report. I still need to talk to rheumy, have him look at them and get his opinion. I can’t understand how I can have such pain in my shoulders and xray says normal. Hand and wrists show minor erosion in an area, and other minor RA signs,but they hurt all the time. RA is confusing.

    Reply
    • February 23, 2010 at 5:58 pm
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      My shoulders have never looked noticeably swollen, even though one of them has been damaged enough to need replacement.The only way I’ve been able to detect swelling is by the deep impression left by my bra strap on that side.

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      • February 23, 2010 at 7:45 pm
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        Yes Rhonda! The bra strap! That is how I have been telling if I am swollen. My bra straps cause so much pain, and when I get home and take it off major indents. Thank you. Nice to hear someone else say that.

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        • March 31, 2011 at 10:53 am
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          This post was an “ah ha” moment for me! I have had “bursitis” in my left shoulder needing cortisone injections, and my shoulder hurts ALL the time but I didn’t think it ever swelled……but I have noticed that my bra strap left an indention on that side only and never connected the two!

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  • February 23, 2010 at 10:37 am
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    OH I am so glad that I am not the only one with weird symptoms…the only thing they have been able to truly document has been my elevated CRP levels. I have lots of popping, and it is mostly painful especially in my feet and knees.

    My fingers swell slightly at random times and although I have one crooked finger, I have never shown any damage on X-rays. I feel right now both of my knees are swollen and my left the worst, however, I know if I go get an X-ray, it will show normal.

    I have sharp pain that comes on very fast feeling similar to an ice pick and then subsides or disappears completely within hours, especially in my feet and fingers. My fingers also have sore spots on the pads for days at a time like I smashed them with a hammer but have not done so. Pressure like trying to open a jar is horrendously painful during flares.

    My fiancee can always hear my joints popping across the room. I have stiffness in all of my joints every morning for at least two hours and when I am flaring, walking is excruciating after about 15 minutes. I love to walk and have a treadmill at home, so on the off chance I am feeling good I can get a little bit of exercise. Having had these symptoms since childhood, had always been told by doctors it is just “growing pains.”

    My internist has been sympathetic and hopefully I can get to a Rheumy doctor for a real diagnosis, but they are almost a 2-hr drive away and I have no medical insurance. The last two weeks with my knees so bad has made it tough to go to work (pizza delivery)and go to school(walking across campus to classes can be tough.) After walking or standing for more than 10 minutes, my knees feel more swollen and hard to bend. But I laugh a lot and keep going because that is all I can do.

    One strange note here though I wanted to say is that when I am flaring, I find that I do have some inflammation in a very strange place, in my mouth. My gums on one side or the other always tend to swell for a few days. Pretty strange, eh? Anyone else have weird symptoms like that? I really would love to hear from you.

    Reply
    • February 23, 2010 at 7:38 pm
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      Thanks for posting Michelle.

      Just want to comment on this part “not the only one with weird symptoms.” I think that’s my point: it’s not weird. It’s not weird that swelling and pain and the blood tests we have currently do not match up. We have a lot yet to learn about RA.

      Reply
    • February 28, 2010 at 10:54 pm
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      I also had knee pain starting when I was approx five years old. I was told it was growing pains and then eventually diagnosed with Reactive Arthritis. It wasn’t till college in 2002, spring of 03 that I was finally diagnosed with AS after approx twenty years of normal knee xrays and drs looking at me and shrugging their shoulders. When I was 16 I had a flare so bad I was told I had cancer and would die within the week. 60mg of steroids 2xdaily “cured” that. Because looking back at it all, it was AS all along. It is things like the knee pain and the fatigue that are clues as to what is really going on. Even the swelling in the gums. My jaw sticks sometimes and cracks, I thought I was crazy, turns out it is TMJ which is common with AS. Once you have a diagnosis, the pieces of the puzzle fit together better and you have those “ah ha” moments where things make sense. I wish you the best of luck in getting diagnosed. I know once I had a diagnosis I felt so much better, relieved I wasn’t crazy. Hopefully then you can have a more effective treatment plan so that you can enjoy the rest of college. I know once I had my diagnosis, the second half of college was SO much easier!

      Best of luck! -K

      Reply
  • February 23, 2010 at 10:43 am
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    I continue to get swelling but no redness or heat to it..(like the textbooks say) How dare my body not be textbook.. How rude!!! This morning stiffness is another joke.. i cannot comprehend morning stiffness. im stiff all day and night every day. nothing worse then others just all day everyday.. Its not worse in the morning its worse all day.. I creak and crack and i fear i need an oil can in all my joints..snap crackle pop live here.. my husband gets grossed out whenhe has his hands on my feet (as i put them on him when laying down) and can feel the creeking crackling..

    Reply
    • February 25, 2010 at 8:43 am
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      We just need some new “textbooks.” And the noises – yes, scary. Just placed my hand on my knee to brace myself standing. It was 1st time ever. The grinding inside that I had not heard – scary.

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      • February 28, 2010 at 5:44 pm
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        Hi Kelly. I read your post on ribs hurting, and lower back, (for me it is the Sacroiliac joints) the hips, (mine is especially R side and down the thigh) My Rheumy says, you have RA, it can’t be in spine! He is wrong, if you do research. We may have Ankylosing Spondylitis, which does affect the lower spine. My Rheumy has also tried to blame it on my Fibromyalgia, the sides of my ribs hurting. I believe it takes the patient being proactive in researching as well as a decent Rheumy. Mine is one of two in my county. The other one is retiring in a year. I was just contacted by my current Rheumy that he is leaving the state and someone else will be taking over his patients. I am glad!!!! I am going to go to the one that is retiring in a year. He has quite a few years of being a doctor under his belt. And sounds like, on the phone, to be a nice, fatherly type of man. My current one is quite, and obviously not up to date on diagnosis’. Hard to get a hold of, and hard to follow up with written scripts for my OxyContin. I have had to go without or a day or two, because the request will sit in his basket 2 to 3 days! Anyway, did not mean to get off the path, but do internet searches on AS. Oh, my name is Marian. (^-^)

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        • February 28, 2010 at 11:27 pm
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          Mariam: I have a diagnosis of AS, Kelly posted about it a few months ago. AS effects joints differently than RA. With AS your bones fuse which is different than RA. Both are serious Dx and must be treated aggressively, and often times are treated the same way. The only difference in treatment is that the dosage amount and frequency is increased for those with AS. With AS I have TMJ (like arthritis in the jaw which can cause lock jaw, headaches, toothaches, tooth decay, tooth uprooted…), Iritis in which the iris of the eye swells and your optic ring can dislodge (that happened to me) you also loose night vision and have sensitivity to light as well as vision changes. I also have pain in both hips, fracture at T12, reverse scroliosis and pain in the cervical, thorasic and lumbar spine. Additionally I have numbness and tingling in both arms and legs. I have fallen numerous times from this numbness and tingling. AS like RA is a very serious diagnosis. I also get rashes when my AS flares a lot. I also will get IBS too. I hope that your dr is able to figure out what your correct diagnosis is. Rib pain can also be a symptom of AS as your ribs can actually fuse which restricts your ability to breath.

          Best of wishes to you! If you have AS questions I would be happy to try and help or check out spondylitis.org

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        • March 1, 2010 at 8:37 am
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          Hi Marian, I’m sorry you are having such doctor troubles. I’ve also had to drive hours to get to doctors. It’s really frustrating to that you don’t have an answer yet, but I hope a diagnosis comes soon. RA patients and AS patients take many of the same medicines, but their issues do differ some as URandomnessK pointed out. Perhaps genetic testing would show whether it’s RA or AS since they have different genetic markers. And, yes, RA can affect the spine and the ribs.

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  • February 23, 2010 at 11:14 am
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    Praise God, I finally found someone else who’s experienced the same thing I have! I’ve had the same problem with my big toes and thought i was going insane! The pain is just incredible! Thank you so much for posting about it as I’ve never heard anyone else say this. Gout was also suspected with me but it’s not Gout. I’m positive it’s the RA. It’s in both big toes and what’s weird is that one day I’ll wake up with the right big toe killing me and the following day or week it will be the left one–hence why I was doubting my sanity!

    As for the other questions: I have RA in my toes, ankles, knees, hips, elbows, wrists, hands and shoulders…just about everywhere I guess. Sometimes I have swelling with the pain and sometimes I don’t. Sometimes there’s a lot and sometimes hardly any.

    My SED rate and CRP were normal when I was first diagnosed and on another test the SED rate I think was slightly elevated. I’m getting another set of xrays done this coming week. I also have Osteoarthritis so that always shows up in my xrays anyway.

    I see a pain management doctor for this but was already seeing him before I was diagnosed with RA due to disability from my back being hurt. The RA was only diagnosed 2 years ago. I’ve been disabled for 10 years now and have lived with chronic pain all this time. As far as I’m concerned, I’ve never met a doctor yet that really understands how much pain I’m in or people like us are in. I doubt if they could handle it themselves. So I play their game, keep my mouth shut and just endure.

    I don’t take any meds for the RA specifically; I just take morphine for the pain (both my back pain and the RA)

    Reply
    • February 25, 2010 at 4:59 am
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      Shortly after I found out I had RA I had a VERY bad attack on my big toe!! Right foot.Thought it was gout also. RA Dr. told me it was not gout. I never ever had pain sooo bad. Swollen,hot , red . had to use a cane to walk.Ive only had this twice but it seemed like for awhile if I stubbed my toes or hit my foot on something it would act up again. Scared me to death that I would get it again!

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    • February 25, 2010 at 8:47 am
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      Yes! Who would believe so much pain can fit into a toe? Mine like to match so it is never 1 toe. Haha.

      Why no dmards? RA meds could reduce need for pain meds? Do you think it’s too late?

      Reply
      • February 25, 2010 at 12:22 pm
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        I just have to thank you again for posting, because it’s such a relief to see that I’m not alone and it’s not in my head. Cindy Tomlin not only mentioned the same big toe pain I have but also pain in her ribs which I’ve been having too. I could really use more info about this for my doctors if anyone can help me.

        My question is do others have RA pain in their ribs or in their hips or lower back? Does anyone know where I could find something that would prove that RA does in fact affect those areas of the body?

        Reply
  • February 23, 2010 at 11:39 am
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    1. No major swelling, just slight puffiness.
    2. No normal blood tests/always showing elevated levels across the board.
    3. Doctor is not concerned about lack of swelling. She’s more focused on pain and joint damage. And the fact that I only have slight puffiness doesn’t discredit the fact that I have a constantly active and aggressive RA-in her opinion.

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  • February 23, 2010 at 1:02 pm
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    I have some joints that swell with pain, and some that don’t. The noticeable swelling is in my hands (fingers) and feet – sometimes to the point where I can hardly bend my finger. But other joints don’t swell or at least it’s not very noticeable – particularly knees and wrists. My wrists may be incredibly weak and hurt but show now visible swelling.

    I don’t have an accurate read on the correlation of my blood test results and symptoms, but fortunately, I have a doctor who is more concerned about how I tell him I feel than how a test turns out. Even when he can’t see any swelling in my joints, he always checks to be sure my pain is manageable and that I’m content with the current treatment.

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  • February 23, 2010 at 1:15 pm
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    Hi Kelly. My constant default position is that every single one of us is different. From 1990 through 1991 I had redness, swelling, and pain in a different set of joints everyday. Seemed small joints only – jaw, wrists, fingers and toes. Prednisone stopped the pain but still had swelling and redness. Then I lucked into a 10 year remission.

    In 2001 the RA hit me suddenly and like a hammer. Knees, wrists, feet. Lots of swelling but no redness. Lot of pain. Also felt like I had the flu for 3 years. Prednisone didn’t touch the pain this time. Despite a plethora of drugs nothing worked except narcotics and that relief was only partial. Especially with my wrists, they would start to hurt more than ‘normal’ and my wife and I would sit and just watch them swell. Right knee swelled and was drained monthly until I had it replaced. The night after the surgery I had a flair and started to swell. Since I had a fresh incision the fluid in my knee had some place to go and soaked through 6 inches of padding, the side of the mattress, and puddled on the floor. As usual it was bright flourescent orange. The nurses freaked. Not helpful.

    I have been in remission for 4 years now. I was down 90 lbs and it took me 2 years to regain enough energy to make it through a normal day. I have an excellent Doc and he takes the time to listen. My RA does not follow the rules. I am not symetrical. My best hour of the day is right when I wake up. My fingers and toes have been spared. My flair lasted 3 years, it did not come and go.

    Again we are all different. If you don’t like your doc and are able to make a change, please do. It’s our life and our body and we are in charge of it. Good luck.

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  • February 23, 2010 at 1:19 pm
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    I don’t notice the swelling, but my doctor and massage therapist says there is some swelling. I also don’t have a lot of red and hot joints. They just hurt.

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    • February 23, 2010 at 7:45 pm
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      Hi Mer. Haven’t seen bumped into you in a little while. Sorry to hear you still hurt. I keep thinking I’ll get better, too. :sun:

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  • February 23, 2010 at 1:39 pm
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    I have minimal swelling- only a little puffiness in my hands each morning. My sed rate (ESR) and C-reactive protein (CRP) are always normal, even during wicked flares. This really helped delay my diagnosis because these are classic indicators of RA inflammation. It wasn’t until my rheumatoid factor came back high (80, now up to 240) with positive CCP antibodies that RA was considered as a diagnosis.

    I have a great doctor who does not judge pain by RF levels or joint swelling. She believes that her patients’ pain is what they say it is. She said that most of her patients’ disease processes “do not play by the book” and she needs to keep an open mind when making diagnoses and treatment plans.

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  • February 23, 2010 at 3:38 pm
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    Before diagnosis:Major swelling and pain in a few joints that became severely eroded within 6 months. After MTX: very subtle swelling in some joints off and on. Pain,creaks,pops,grinds with normal CRP/ESR. Doctor suggests I have Fibromyalgia since these tests are normal. After 2 shots of Enbrel: pain is reduced! Before I can take my 3rd shot I develop a cold/flu then a sinus infection followed by bladder and yeast infections, pain and swelling increase. Missed 4 weeks of shots and 2 weeks of MTX. Back to both now and anxious to see if I will have the same results I saw in that few days.

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  • February 23, 2010 at 3:43 pm
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    My blood work has NEVER reflected what was happening. Even when in an obvious flare. Although, my first flare was by far the worst and the hardest to get under control. My joints have never been “hot” to the touch. My hands and feet give me the most problem. When I wake up my hands are swollen and usually go down during the day. Sometimes not. My feet swell as the day goes…go figure! My joints are always popping and sound terrible. All of them. I’m on SimponiOne now – 3rd injection tomorrow. My doctor is always obviously puzzled how my blood work and look good but, joints look so bad. We just continue to try to fight it. They only comment I got from him that I wanted to scream over was how RA can’t be in the first joint of my fingers…

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  • February 23, 2010 at 7:01 pm
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    I get a little swelling in my hands, more in my ankles and feet, but not significant anywhere. The swelling has absolutely nothing to do with my pain level. My pain continues to be intense, always in my hands and feet, frequently in my shoulders, elbows, knees, hips and back. I cannot write for more than a paragraph or walk for any length of time. My fatigue continues to be horrible. I have been like this for 18 months.

    All of my blood tests have been within normal limits. I guess this makes me seronegative RA.

    My Rheumy has been good about diagnosing and treating my RA, despite my test results and lack of swelling. However, we haven’t found a good treatment in the 8 months since I was diagnosed. She’s encouraging me to get a 2nd opinion, which I am considering at this time. She wants to send me to our state University.

    Anita

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  • February 23, 2010 at 7:02 pm
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    I have had intermittent swelling, but the pain and swelling do not always coincide. I can have incredible pain with little swelling, or minimal pain with increased swelling. At times, there is pain and swelling. Only once (4 years ago) did I have a painful, swollen and hot joint, and the x-ray diagnosis was a healed previous fracture of a knuckle (I have never broken a knuckle, so now thinking back, it must have been RA related). Since being on Methotrexate & Enbrel, the swelling has decreased. Pain has decreased somewhat, but I would not at all call it a remission.

    I have only had ESR & CRP levels done once, at the time of my diagnosis. Both were within normal range. My RF and anti-CCP were sky high.

    My rheumy seems to correlate swelling with activity of the disease. My hands and wrists are very minimally swollen, but my ankles and feet remain swollen (with sometimes my toes barely touching the floor). My doctor tends to palpate my hands and wrists and sometimes ankles, but has only once (at diagnosis) touched my feet. My feet and ankles have been most affected by RA at this point. She did point out the swelling in my foot joints at my last visit.

    My rheumy does feel that my RA symptoms have lessened since diagnosis, mainly due to the decrease in swelling. When I told her about the pain, she said that everyone feels pain differently. I told her that I didn’t want to complain, but that I am still hurting and had been so hoping for a full remission. I do believe that she knows that I hurt, even though the swelling has lessened. I had new s-rays done to look at the erosions. We are keeping Remicade as a possible next drug if this pain does not decrease.

    In my mind, RA must be treated according to each person’s experience. RA is not the same in any two people. Today, even though I may be near a “clinical” remission, the pain is truly real.

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    • February 23, 2010 at 8:06 pm
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      Thanks, Noelle. Reasons to believe that “clinical remission” may not be properly defined either.

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  • February 23, 2010 at 9:29 pm
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    I have never had much swelling, and my rheumy says he see’s that in some patients and it’s not unusual. Actuallly I’ve had 4 different Rheumy’s and they’ve all said they’ve seen it, not often, but they’ve seen it. I was and maybe still test serum negative for RA. However my SED rate and inflammation test come back high or elevated. After 10 years of this dreaded disease, I have continuous pain in every joint, everyday, it never leaves me. I notice now that after a joint has been very aggrivated, I get nodules on it. I crack and groan with every movement now, loudly. I notice now I’m starting to swell a little more on my feet and hands but nothing like I’ve seen in either people. Hope that helps.

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    • February 25, 2010 at 8:58 am
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      I’ve had others tell me that too – that swelling changes over time.

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  • February 23, 2010 at 10:45 pm
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    Well, I am a mixed bag of fibromyalgia and RA. I’m usually not sure what is what, very frustrating.

    1. Swelling almost always in right index and middle fingers. Swelling increases greatly with use. My knees had marked swelling about a month ago that lasted about a week. Had stayed at a place with lots of stairs. Lots of pain, then swelling, then swelling without a whole lot of pain. My neck and knees have had grinding noises for YEARS. I have just started with the popping. Sometimes very painful, sometimes no pain. Losing some function in my hands and ROM in left shoulder.

    2. Seronegative RA and the only test that is elevated is my ESR. It has been elevated for years but not diagnosed with RA till this past year. Fibro for 10 yrs. On MTX and Humira, my first normal ESR in years. CRP has always been normal. My pain and stiffness has been greater the last month but my ESR was normal?

    3. My doctor has been pretty good to listen to me. She doesn’t treat me on the basis of my labs but how I am feeling. Being seronegative I was very hesitant to start MTX. I asked for a 2nd opinion from a doctor in another state. He agreed with my Rheumy so I felt better about starting the MTX. We have now added Humira, also on Cymbalta for the fibro. My fatigue is terrible, tired ALL the time.

    Thanks for your posts. I’m just getting started on all your info. I love this idea that not everyone is a “textbook case”.

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  • February 23, 2010 at 11:13 pm
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    1. RA swelling: Most of the time now I don’t have visible swelling. I have recently had intermittent pain with swelling I could feel but NOT see where the palms meet the fingers and where the balls of my feet meet the toes. The rheumy doc told me that was swelling, otherwise I wouldn’t know. I have daily pain in many joints without any swelling (sometimes different joints on different days), including fingers, wrists, elbows, shoulders, neck, breastbone, hips, knees, ankles, and toes. I also have pain in my feet and hands in places that I never knew before I have joints (lol). Shoulders creak, pop, and slide around (ouch!) every night and day; neck and knees creak. I was initially diagnosed with RA when I had a LOT of inflammation (and pain) hit my knees. Had the fluid drained and prednisone shots twice each.
    2. RA inflammation markers: I am seronegative for RA factor (so far). CRP and ESR were elevated initially, when I had extreme knee inflammation. Now, CRP and ESR rates are normal, tested every two months, but I have pain daily (and nightly) in multiple joints. Real pain, not “in my head” pain.
    3. Doctor’s comments: Joint pain without swelling is osteoarthritis (disagree!). Pain in adjoining muscles is not due to RA, but is fibromyalgia (disagree!). RA is considered under control if you have less than one hour morning stiffness, no swelling, and test numbers within range. You should expect to always have some level of pain. (At least pain is being acknowledged… I think?)

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    • February 24, 2010 at 3:05 pm
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      Caysea, I completly agree with you. My shoulder joints were killing me and the very front of my shoulders hurt so much and were swollen and painful. The Doc said, this was not affected by RA. The way I see it, if your joint is swollen and inflammed, wouldn’t the surrounding tissue, muscle and skin around it be affected as well? They love to throw Fibromyalgia at everything!
      I complained at how my hands are drifting away in an outward direction. My Rheumatologist said, “I have never seen this before, it is NOT typical of RA!!!” Thinking I was losing my mind, I read books and did internet research, its called ulner deviation!! Hello, they call themselves Rheumatologist!
      I just get so upset!
      Nice to know I am not the only one left scratching my head and wondering as I leave the Doctor’s office.
      Cindy :curse:

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      • November 23, 2010 at 3:50 pm
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        why is the default for what doesn’t fit with RA fibromyalgia??? So many of you sound like PMR (polymyalgia rheumatica) patients. Not a lot more helpful than fibro but it does seem to be less stigmatised!

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  • February 23, 2010 at 11:31 pm
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    1. the reason my diagnosis came about was me finally getting the nerve to ask my doctor about my right thumb, which is currently (and previously) grown to twice the size of my left.
    It only started bothering me when putting pressure on my thumb (like to help me stand etc.) became very painful.
    it comes and goes. Never really gone away. and recently my left foot (where the toes connect to the body) has swollen up, and doesn’t seem to be getting smaller yet.
    more of my joints hurt without swelling. having both at the same time comes and goes 😛

    2. I received alot of negative tests when i first came in. mostly they check blood cell count. 😛 i’m not quite sure which ones they use now.

    3. doctor doesn’t say much. 😛 me:”i’ve been getting pains in my chest that will come in waves” doctor: scribbles… pause.”so you should probably take a higher doese of follic acid” etc…>> sigh, 😛

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    • February 25, 2010 at 9:01 am
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      Number 3: that is funny. 😎 Did you ever get a copy of his notes to see what he writes?

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  • February 24, 2010 at 2:07 am
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    hi,
    1.when my jra started,at that time it used to be so mush painful with the swelling. my joints used to be double in size especially feel[i remember my feet only as i cud not walk].hands r also swollen a little nowadays not even exactly noticed.but pain is too much.now i m hving pain in feet n knees elbows n around the neck bt swelling isnt too much not even noticed by anyone easily.
    2.half a year ago,my esr count was normal,i was hving pains besides these.but now m having pains with elevated esr.
    3.he is OK type doctor,i dnt like my doctor n neither do i hate him cos atleast he listens when i m requesting to keep the medication minimum or when i m not willing to take mtx by injection.but yes,smtimes he doesnt understands the extent of pain m hving as he says everything is “ok”..that hurts..but this time my esr was elevated so he accepted my pain….[nw i think this can b the reason…u hv chosen just the right topic as i hv just come back frm my doctor]..
    he has prescribed steroids fr a month n half.i was refusing as i hv already gained a lot of weight BUT HE PROMIse THaT IT WONT INCREASE UR WEIGHT? SHUD I TRUSt HIM?

    he is ok ok as i said…he doesnt say me anything but my MOM says u argue a lot with ur doc….u shud not….n she says to follow the doc as he is the doc.but i say……i m the patient n the one who has to take meds n side effects ….so let me clearify…….he is so calm bt i make him irritated smtimes….i luv lol…..to do as he hurts me with his bitter pillsssss… :blush: 😀 :-)) :cute:

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    • February 25, 2010 at 9:04 am
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      Rachel, thank you for that good description.

      And, I think it’s ok to argue with the doctor as long as you are nice. :chic: I hope your mom won’t be mad at me saying that… 😉

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  • February 24, 2010 at 2:11 am
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    and u know he never tells me that i will hv to take meds for lifetime :pill: :pill: :pill: …..he thinks i dnt know….bt m not that stupid :tiger: …so he says always when i ask….year or two…..n then i will stop…hahahhahaa..
    he thinks m still a kid.. :chicken2:

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  • February 24, 2010 at 5:50 am
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    1. I tend to get some puffiness but never any significant swelling. The only place where I can detect swelling myself is my wrists. For me, swelling and heat do not correlate with the joint pain I am experiencing.

    2. I have had some relatively normal CRP/ESR tests whilst still being in significant pain. My ESR was significantly elevated ONLY in my first flare. Now it is much lower but I still experience periods of intense pain during what I consider are flares.

    3. My doctor is wonderful. He doesn’t treat the blood tests because they don’t seem very reliable for me but is rather concerned with my symptoms and how they’re impacting on my ability to function.

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  • February 24, 2010 at 8:02 am
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    Hi Kelly, When I first developed RA it was in my hands and they were badly swollen. Like a good engineer I wihpped out my vernier calipers and documented the diameter of each joint, then compared those to the inside diameter on my rings, as much as a 4mm increase on some fingers (over an eighth of an inch to you guys in standard). Since going on treatment, my hands are sometimes swollen, sometimes not, never as bad as the initial period. Some days my rings will fit, other days not, so I have mostly abandoned my rings. Mostly my hands are pain free, regardless of swelling, unless I work them too hard. I have to agree with the ladies above, I notice swelling in my shoulders based on my bra straps. My knees are affected, but because I am in long pants most of the time I have not really identified if they are swollen or not. Hope this helps…

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    • February 24, 2010 at 8:33 am
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      Alison – thanks for the laugh, but what a good idea all at the same time! It think my hubby has one of those things in his shed – I’m going to ask him about it this evening!

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      • February 25, 2010 at 9:07 am
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        Funny girls. Maybe we should get one of those for the doc.

        Here’s the thing: I know what my finger/ wrist/ foot looked like before RA or how big – but I did not measure the “before.” 😛

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        • February 25, 2010 at 1:18 pm
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          That’s the one “advantage” with having it in the hands… you have rings that used to go over the joints, so you can carry your “before” with you to the doctor. I have really thin fingers, so my hands swollen looked pretty normal sized, but when I showed him my ring, it became clear how much had changed.

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  • February 24, 2010 at 9:38 am
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    1. Swelling – The worst swelling was at onset but I still get moderate swelling. Pain and swelling aren’t in direct proportion. Sometimes a swollen joint isn’t that painful and a non-swollen joint is killing me.

    2. CRP – I have had normal CRP rates and still was in pretty significant pain.

    3. My Rhumey – She rocks. She seems to understand the pain and frustration of RA.

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  • February 24, 2010 at 1:46 pm
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    This is my first post but this is interesting to me because my hot, swollen joints were initially treated as seperate injuries without any consideration of RA.

    1. During onset I had severe swelling in my left elbow, then left ankle, then right knee. The Dr. drained two large horse shots worth of fluid off my knee because that would make it feel better…right. Since diagnosis, I’ve noticed that I actually have more pain without the swelling but that could be because of the disease progression since I’m now symmetrical 🙂 The meds have taken a lot of the swelling away but stiffness and pain are still there regardless of whether or not you can “see” it. I’ve had no major swelling recently just slightly puff hands and it seems to be after I take the MTX. Has anyone else noticed that?

    2. My sed rates were slightly not normal but my rheumatoid factors has been negative each time.

    3. I went to two general physicians before being refered to a Rheumatologist. While my Rhuemy is wonderful, the best response I got was from the first general physician who said “you’re too young to have anything bad wrong with you” in response to my asking him if all the joint swelling could be related.

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    • February 25, 2010 at 9:12 am
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      “Too young”? Toddlers get a form this disease! They need to be educated.

      Thanks for your first post.

      I also have “more pain now without the swelling.” Looks like what it is that causes the pain is not what causes the swelling. They can occur together or separately.

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  • February 24, 2010 at 2:16 pm
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    RA Inflammation; None according to my Rheumatologist. However, many days I cannot wear my rings. I would have to say that I don’t have severe swelling. I do have Hot red areas over the joints when in pain.
    Blood test; My blood test are Always normal! RF negative until this year it now shows positive?! Strange I think.
    Rheumy Statements are contratictory at times. I was just with him yesterday as I am in a flare. He stated, “Well, there isn’t any swelling.” When I complained about pain in areas like my ribs and shoulders he stated, “maybe something else is going on because those are areas that are NOT affected by Rheumatoid arthritis.”
    I don’t know how many times I have complained about laryngitis to my Rheumy and my GP, neither have EVER stated that this is an RA issue. I never know where to turn.
    I am interested in your finding of this study Kelly, and Kudos on a Great site! I don’t know how you do it!
    God Bless you,
    Cindy

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    • February 25, 2010 at 9:17 am
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      Cindy, I cannot tell you how frustrated I am to hear doctors say those things. Why do they say things that are so easily disproven in 5 minutes of research? If someone’s shoulder hurts, it should be treated. If the patient says it hurts, then it does…

      By the way: Yes. RF can change. Can show up late to the party, etc.

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  • February 24, 2010 at 4:15 pm
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    My swelling and pain are almost always correlated. I rarely have any pain in joints that are not swollen, although the amount of swelling isn’t necessarily correlated to the amount of pain. I can have a really swollen foot that just aches, but I never have a really painful joint that isn’t at least somewhat swollen.

    I usually have elevated sed rates, but no RA factor.

    Thanks, Steve. It’s good to hear from other men, and from someone else who does better in the morning.

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  • February 24, 2010 at 4:54 pm
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    First, thanks Kelly for this forum and everyone else for sharing. I am really surprised how many have responded who are sero-negative. This kept me from a diagnosis for 12 years. I had a couple GP’s recognize my symptoms as RA but then a negative RF would back them off right away.
    1. Swelling was subtle at most until the last year and then it was obvious in knuckles and ankles. Prior to that the worst pain was in my shoulders and no obvious swelling there. MTX has really helped with pain and swelling but there is a lot of creaking and cracking still going on.
    2. My ESR so far has been elevated every time I have had it checked over the years but now on MTX with less pain it is down in the normal range-but it is early as I have only been treated for 6 months now.
    3. With a negative RF I have had doctors ignore my pain for 12 years. My family says that I have a very high pain threshold so for me to go to a doctor and beg for help in saving my joints indicates a high level of pain and disability. The doctors would say frozen shoulders, bursitis or osteoarthritis and just take anti-inflammatories and get over it. Since my RA was palindromic at first, I did get over it for a while but it always came back. I am very grateful for my current rheumatologist’s courage in diagnosing it.

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  • February 24, 2010 at 6:47 pm
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    During the early years after my diagnosis in the late 80s, my joints often swelled and presented with “classic” symptoms: pain, swelling, redness, and hot to the touch. Over time, however, while my joints would be as painful as before, they often didn’t swell or feel hot or look red. This presented a problem when I saw my doctor for pain; there was nothing there for him to see, so he just had to take my word for it that I was hurting. Naturally, that led, in time, to “the look” you can get from doctors when you ask for narcotic pain relief. It was very frustrating.

    Today, my RA concentrates itself mainly in my wrists and hands. Occasionally individual joints swell — sometimes with pain and stiffness, and sometimes without. They have never been red or hot. My right “pointer” finger is always a little swollen — when I compare it to the finger on my left hand, the swelling is obvious. This finger is also stiff, and because of the swelling, I cannot fold it tight into my fist like the others. But it’s not always painful. Go figure.

    I think “swelling” is just one of the visual clues RA offers us for diagnosis, but like sedimentation rates and the Rh factor in the blood, it isn’t conclusive. Sometimes I wish my joints *would* swell each time they flare — it would make working with my rheumatologist and other doctors so much easier.

    As always, great post, Kelly. Keep up the good work. You’re an angel.

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    • March 24, 2010 at 7:38 pm
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      Wren
      My RA has always included a lot of pain with little swelling. I have never seen swelling in my shoulders or my thighs, but was unable to walk or lift my arm.

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  • February 24, 2010 at 8:00 pm
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    Hello Kelly and all the RA warriors out there. My first visit with a Rheumy was four years ago and it has been a roller coaster ever since.I will try to keep this as brief as possible.

    1. Swelling was a big problem when all of this started. My knees were the size of small volleyballs. Rheumy wanted to drain the left, but I refused. Should have let her so she could test the fluid. I have had MRI on both ankles and feet due to pain and swelling. Found that they were full of tendonitis. Have had fingers, hands, and wrists swollen til they look like helium balloons. Recently I have very minimal swelling. My pain does not follow any rhyme or reason. I can have lots of swelling and little pain. The opposite is also true. I am also diagnosed with osteoarthritis and Sjogrenes’ Syndrome and many times my pain is blown off as OA,not Ra. I have low grade fevers with increased pain.

    2. My labs are always the same. RA factor is mildly elevated, the rest of my labs are within normal limits. Normal limits according to who? Even in my worst flare, labs remain the same.

    3. My Rheumy is very confusing. At first it was “assumed” that I had RA based on my symptoms, pain, and swelling. Since then it has been a different story with every visit. At one point she was absolutely sure I had RA in my feet, ankles, hands, wrist, and collar bone joints. My last visit a week ago she is not sure if I even have RA. It seems that I have “too much” pain related to the minimal amount of swelling I have. Now I am looking for a second opinion to find out why my joints are crumbling, hot, and tender.Yet my Rheumy tells me I will always need a Rheumy in my life!?

    I guess I am in wrists splints, custom shoes, and leg braces because I “do not” have RA. I guess it is all “in my head” like they used to believe 30 years ago.

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    • February 25, 2010 at 11:20 pm
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      Jamie,
      Did it encourage you to see how many others have RA pain & damage while the swelling is under control or has gone down? I was going to write this post “someday.” But I wrote it now because of what you wrote the other day.

      I hope that you will be able to get a second opinion. I had more than one doctor experience just like yours. I’m so glad I kept trying and have a better doc now. Don’t give up! :heart:

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    • February 26, 2010 at 1:58 am
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      Hi Kelly. I am floored by how many of us out there have little to no swelling. Why do so many doctors still go by the textbook when so many of us do not fit it? I guess I am frustrated, hurt, and confused with my first Rheumy. I put a lot of trust and faith in her. Now that I have had time to remember back through the last few years I can see how inconsistent she has been with my care. I will not give up. I may be scared, frustrated, and confused, but I will find a second opinion. If I need a third and a fourth I will.I thank you Kelly and every one else on here who has shared their story. It gives me the strength and determination to keep going and find answers.

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      • February 26, 2010 at 9:30 am
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        Yes, it is hard. The last year was very hard as I went through that. See comment #45 below – her last words about “trust” and doctors. Have you gotten all your doctors notes / records? You don’t need to tell them you are looking for a second opinion to do that. Just that you need to keep your own records because you have a chronic illness. Just a thought.

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  • February 24, 2010 at 9:38 pm
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    Kelly, I’ve been reading your blog for just a little while, but echo everyone else that it’s tremendously helpful to hear from other (most) people who don’t follow text books when they decide to get sick!

    I haven’t ever had much swelling either, despite bilateral CTS and through 4 hand surgeries, which has been a problem getting a diagnosis and treatment. But what I’ve found most ignored is the major popping, creaking, and crackling that I get in all my joints all the time. Not glad anyone else experiences it, but it is nice to hear other people with the same symptom even if I’ve never been able to get a doc to take it seriously (sometimes treated like a novelty–hee hee you’re like Rice Crispies!).

    Starting MTX tonight. Old school thinking (and childish fears) kept me from trying for too long and now my neck and shoulders are showing a lot of wear on recent bone scans despite 600mg plaquinil/day. Nervous and apprehensive, but hoping it will make things a little better.

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    • February 24, 2010 at 10:23 pm
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      Samantha,
      I’m very behind on replies to comments, but I had to stop and say I’m with you tonight. Mtx is no cure, but to some degree it helps almost everyone who uses it. Please let us know how you are doing. :heart:

      By the way: I so much agree about the digusting & scary noises that come with gross sensations &/or pain. I have had several docs say: “That’s meaningless.” I do not move at all or even breathe w/out these noises in joints since my RA is in every joint. The noises came with the RA pain/ stiffness. Undeniable.

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      • February 25, 2010 at 12:37 am
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        Thanks, Kelly. Means a lot to hear back from you.

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  • February 24, 2010 at 11:28 pm
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    Great blog you have here Kelly. Congrats!

    And it is heartening to see many of the sufferers chipping in their stories about this painful condition that troubles us most.

    I agree with most of you saying that most health professionals do not understand the gravity of suffering most people have to suffer. It is a sad thing.

    Methotrexate in my practice has been a life-saver for many and they have come back with amazing results. I hope it helps many more. Of course, we are worried about the side-effects, but with judicious use, it does a great job.

    Once again, great community you have here. Keep it going.

    Keep Well!

    Reply
    • February 25, 2010 at 6:52 am
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      I had a nurse practitioner tell me one time “I think I have RA too but I would never ever take those meds. (MTX) because they are poison to your body”. My response was if you were in this much pain and had to weigh the price between quality of life and being a veg. in a wheel chair, you would do what you had to do to feel better!! I made the choice to take the MTX and it did help me LOTS. Unfortunately it damaged my liver and I had to stop taking it.But if I were able to take it again I very much would!! None of us will live forever but the time I have on this earth I want to be able to live NOT just exist!!

      Reply
      • February 25, 2010 at 8:46 am
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        Cindy – I so agree with you – we have to weigh our options. I just had the same discussion with my husband last night because my meds cost over $400 per month as we don’t have insurance. The option is to become this crippled up, deformed woman who would have to wear diapers because I couldn’t get myself to the toilet and have to be bathed because I couldn’t do it myself. I too want to LIVE not just exist!

        Just an FYI – I take Milk Thistle twice daily to keep my liver healthy. I too am aware of all the damage we could suffer as a result of these meds we have to take. So far, all my bloodwork is still normal. It might be a consideration for yourself. Best wishes…..

        Reply
      • February 25, 2010 at 9:21 am
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        I cannot believe a nurse said that. I once had a nurse tell me to try a diet cure when the doctor was out of the room. It was so funny that she asked me not to tell the doc. Haha.

        Usually, if mtx raises a liver level, it can be discontinued & the level returns to normal. I hope yours did. Sometimes, mtx can even be re-added as part of treatment later on.

        Reply
        • February 25, 2010 at 6:39 pm
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          Kelly. It took a year but the levels in my liver went all the way down and its fine now. But the Dr that did the biopsy told my Dr He could never put me on the MTX again. So far the Humira has been working but Ive been off it since Dec. because of first one illness and the getting a tooth pulled and then getting my H1N1 shot..etc.. the list gos on and on. I have just began to feel those old familiar pains coming back again and it scares me, I know whats coming. The pain is sooo unbearable some times. My family tries so hard but they really DO NOT GET IT!! I pray my two girls never ever have to suffer with this kinda pain. I really wouldn’t wish it on my worst enemies, But maybe my Rheumy??? Then he would know how to help!! (no not really..GOD forgive me) Its just so hard some times. But hey WE ALL know that don’t we?GODs GREATEST BLESSINGS be with u Kelly.And all the rest of my RA family here on this site!! U r all awesome

          Reply
  • February 25, 2010 at 4:52 am
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    Hi Kelly

    1. Swelling – once my left hand was swollen and red for one day, apart from that sometimes my rings are tight. There is pain but no other swelling – although my rheumy sees swelling in my toes – I just thought I had fat feet!
    2. RF positive, elevated CCP, ESR & CRP since the start (June 2009).
    3. As you can gather from 1 my rheumy is supportive. Usually when I see her I have very little pain, but she examines everything and listens to my reports of pain since I last saw her. I got copies of her notes from my last two appointments today and I was surprised at how much she took down. I was pleased that there was only the facts of my history that I had told her and nothing “hysterical” or inaccurate. Although she is very wary of actually stating that I have RA. She has agreed that I am RF positive and have an elevated CCP which both “point most likely to RA”, but not more than that.
    BTW I was just reading a document that indicated that those who are RF positive with elevated CCP will likely have a more agressive form of RA. Have you or anyone else come across this? And is there any foundation based on experience? I don’t want to catastrophise unnecessarily!
    Thanks and keep up the good work!
    Jo

    Reply
    • February 25, 2010 at 9:25 am
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      Yes, about the high anti-CCP being an indicator of aggressive RA. That test is highly “specific” for RA. About 98% I think. Depends on where you read…

      Reply
      • February 25, 2010 at 3:36 pm
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        Crap – I was hoping that it was just another irrelvant medical document. Thanks for you prompt response – I can get back to catastrophising now!
        Jo

        Reply
  • February 25, 2010 at 5:16 am
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    Kelly –

    If I am not on MTX or any biologics, I swell a gerat deal, but as I have been on something for aboug 4 years – I say something b/c we were always chaning the drug trying to find success – I no longer swell very much. I always say that the only thing the biologics really do for me is take away the visible aspects of the disease. I feel just as stiff and in pain as I always have. Yet, the drs. will always say, “Well, the (fill in the blank biologic) must be working because you look good.”

    As I sit there screaming while they bend back my wrists, b/c THOSE are ALWAYS tender.

    It frustrates me to no end that they think they know how I’m feeling based on a glance…like they are no better than the rest of society who thinks if we look well, we are well.

    When are docs going to finally recognize that these biolgoics are NOT the end all, be all treatments they were meant to be, and try something else.

    Oh and yes – I now take pictures too. Isn’t it sad it has come to that?

    -RA SB

    Reply
    • February 25, 2010 at 9:31 am
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      Whatever happened to the old fashioned medicine where the patient said: “Doc, it hurts if I do this” …and the doc said: “Don’t do that”?

      Just joking. But why does the doc get to “hurt” the patient, leaving her wounded for days just to prove that joints will do that if someone forces it to do that? I hear it all the time.

      This “glance” thing you mention: I’ve now found a good doc who does not treat me from what I look like at a 6 foot distance. I am not afraid to say treating RA from a “glance” a few feet away is not appropriate medicine.

      Reply
  • February 26, 2010 at 1:16 am
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    First of all I am always willing to answer any question, I’m a very open person 🙂
    1. My spine/back is ALWAYS swollen if it was ever not swollen I think I would be scared because swelling there is the norm. Because of my AS I also have swelling in my eyes that comes and goes. I also notice swelling in my fingers and knees that come and go as it pleases no rhyme or reason that I can figure out. I swear my hips swell but I wouldn’t even know how to tell if they were. They also make popping and creaking noises as does my back. My hips sometimes feel stuck like I cant move and then they will pop, its worrysome to me.
    2. My SED rate has never been normal that I am aware of however when I am feel REALLY icky tends to be when my SED rate is rediculously impressively write the medical journals about type high.
    3. My dr has on occasion said to me “I dont know why your knee bothers you, we did xrays they are fine, it’s almost like fybro.” which drives me crazy. Recently he has tried to have me believe that taking 100mg of zoloft a day will help with my back pain and I wanted to ask him if he wanted to give me a sugar pill too. He seems frustrated and “stuck” right now with treatment but he is trying his best. I think it can be hard because they try the usual and when that doesn’t work they have to come up with new ways which can be difficult when you see 60-80 clients a day, do hospital rounds and still have to tend to your family and home life. I try to be sympathetic as to what my dr has to go through. But I also know that I deserve good AS treatment and good health. I have also said to my dr in the past that a treatment is not working and he needs to find a new option. I challenge my dr, I ask him questions I ask him to rationalize his decisions with me. I tell him that I want to be proactive with my health and I want to understand every part of my treatment. He has been patient with me and explains things when I ask and if i am not comfortable with something we discuss it and come up with a solution. I think it is so very important to trust your doctor and for your doctor to trust you. Without that trust it is very difficult to have the proper patient doctor relationship. The moment I stop trusting my dr is the day I find a new one. The day my dr doesn’t trust me, I find a new one. AS like RA is an invisible illness so a lot of times trust is VERY important to have a proper treatment plan.

    I hope this information helps 🙂

    Reply
    • February 26, 2010 at 9:26 am
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      A swollen back is horrible. I’m sorry for you K-

      GREAT doctor advice. “The moment I stop trusting my dr is the day I find a new one. The day my dr doesn’t trust me, I find a new one.” It is not easy to go through the process, but I know you are right. We all need to find that courage.

      Reply
      • February 28, 2010 at 10:58 pm
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        Thanks Kelly! I’m sorry for all of us, all the creaking, cracking, grinding, pain and on top of that to have drs look at us and go HUH? or tell us that can’t be. Its infuriating, whether it can or cannot be, it IS being right here, right now so get the scientists, call the medical journals and right this new found thing up! 😉

        Reply
  • February 28, 2010 at 2:11 pm
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    I visited my Rheumy this past week. I knew I was having trouble, but I wasn’t sure if she’d assess me the same as I felt. She did palpate swelling, and decided we’d do a round of steroids.
    I’ve done them in the past, but not for about a year. I don’t really like them, but I agreed I needed help.
    This is the third day of them. I have energy. I have increased range of motion. I can almost walk normally. I didn’t really realise how much things had changed.
    But, I still have a least as much pain as I did which is different than when I took steroids previously, I think.
    And I am really out of shape, because now I can start doing something but poop out fairly quickly. But at least I can start!
    I’m hoping I can re-gain some strength while I’m on them. And that maybe the extra activity will help hold the weight gain in check.
    It would be nice to find a med that had the benefits of steroids without the awful side effects too. Haven’t found that yet. But I’m realising how far from “good” I was.

    Reply
    • March 1, 2010 at 8:47 am
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      Thank you for good info. & Yes, that would be nice wouldn’t it? Sign me up for that med!

      Reply
  • March 2, 2010 at 2:27 am
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    Kmom says, “I didn’t realize how much things had changed.” That’s because we have forgetten what normal feels like, even if we have brief periods where we forget about the pain. We learn to operate in fuge states.

    Reply
  • March 3, 2010 at 11:32 pm
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    Wow I did not know that so many people are seronegative. My rheumy just told me I was still sero-negative. I have slight swelling in my hands when I have a major flare. I have a lot of pain in my hips and elbows but they come back on the x-rays as “normal” My joints creak and pop and make a lot of noise. My hip makes a grinding noise and my shoulders too. Just typing this causes my hands and elbows to ache. I have also been diagnosed with Fibromyalgia. I have a lot of sensitive places but my joints don’t hurt to touch just to use. When I apply any pressure to my hands, like pushing buttons, pulling the reefer door, opening drawers it is very painful. Don’t know if it is fibro or ra.
    My elbow burns like it is set on fire but rhuemy says that is fibro.
    I am very confused. Most days I have pain….and some days MORE pain but no days with NO pain.

    Reply
    • March 4, 2010 at 7:20 pm
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      Hi Donya, very familiar themes. “Burning” is often mentioned as an RA symptom. I’m the same as you – no days yet without pain. I wonder sometimes whether that can be believed – but I guess it’s good to know I’m not alone. Or is it? I hope you find relief.

      Reply
  • March 10, 2010 at 10:06 am
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    Hi Kelly

    1. I don’t have swelling all the time. However i do experience in certain joints like my MCPs, knees, elbows, MTPs… Sometimes there’s redness and/or warmth in the others like the CMC, TMT joints. I’ve gotton more swelling in the mentioned joints over the years, especially in the MCP, MTP and elbows.

    2. I’ve had normal sed rate when i had RA pain, but also vice versa. But recently it has been elevated even when i had lesser pain and swelling. (I don’t really get tested for CRP because of saving costs.) I’m also seronegative and negative for anti-CCP.

    3. My doctor doesn’t make statements about her findings but instead evaluates directly to decide on the next move. So even though she doesn’t tell me that there’s no swelling and such, i can infer from her decisions that she feels i’m doing well. She likes to rely on my ESR and my personal feedback on the state of my RA though. But if i have normal ESR and no signs of swelling, she tends to send me out without any changes to the my treatment plan, even if i wasn’t doing all that well. At one point she even told me that i might even have to live with the pain that i was telling her about because my ESR was consistently normal for a few months and i was already on optimal medication regimen. But after a major flare after that happened, i feel that she tries to rely more on my personal feedback, which is good i find!

    Reply
  • April 2, 2010 at 9:17 pm
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    Hi Kelly, I have never had an elevated Sed Rate or CRP. Checked while in 2 separate flares. My Rheumatologist says that can happen. Sometimes my Rheumy see’s swelling that I don’t consider a problem. He is very attuned to my pain and symptoms… I wouldn’t change doctors even if he stops taking my insurance…

    Reply
    • April 2, 2010 at 9:29 pm
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      Laurie, That sounds like a great dr! :victory:
      I wish he could teach other drs! One reason that can happen is that medications can lower test results.

      Reply

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