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RA or Not RA?

One of my favorite summer shows is about a concierge doctor in the Hamptons, New York. In one episode, a patient spends his entire adult life with a MS diagnosis; he even starts a foundation with the tagline “you are not your disease.” He meets the main character who notices some red-flags, runs new blood tests and finds out that in fact, this man does not have MS but Lyme disease…

What is seronegative RA?

I have sero-negative rheumatoid arthritis. I have the clinical symptoms of RA (swelling, joint pain, stiffness, and others) without the blood work to support them. I have beautiful blood. It is generally hearty and vibrant with the exception of some fluctuating white blood cells. I drink loads of water before every draw so I may not know my true sanguine nature. I do however want to feel better about getting stuck with needles so I do compliment my hemoglobin!

I’m not sure exactly how I feel about healthy blood work. Every time I go to a doctor they check my blood and discuss my diagnosis. They ask me how I’m feeling, what symptoms I have and through a process of elimination always come back to RA. There are a lot of unanswerable questions like:

Lack of supportive bloodwork for RA

I am exposed to animals so I am consistently tested for Lyme and other titers, all of which come back negative. We discuss different autoimmune conditions as symptoms arise and always cycle back. Why?

I wish I could tell you.

“Do I have RA???”

I don’t experience too much swelling, even during bad flares. I don’t have any joint deterioration (yet, at least). I don’t even get fevers often – the telltale sign of an active immune system- or “normie” sick.

Doesn’t sound right, does it?

Experiencing symptoms of RA

Here’s what does. I have joint pain; stiffness and my darling hinges lock up towards the end of the day. I do get some noticeable inflammation in my fingers and toes and I respond to medication. Sure, I am on some blanket autoimmune ones like methotrexate, prednisone and tramadol but I do well with specific biologics like Orencia. I feel like this class of medication wouldn’t be effective if I didn’t have RA, right? Possibly but, a lot of these biologics are effective in treating multiple diseases.

I often wonder, why RA? What specifically about my condition screams RA? Is it the namesake joint pain because I certainly don’t have the inflammation to back it? Is it all in my head? I firmly don’t believe this but this doubt presents occasionally.

Whenever I go to a new doctor we list my symptoms. They look at their computer, eyebrows raised, and challenge the current diagnosis. Is it Fibromyalgia? Is it an odd inflammatory condition? I understand the skepticism. I look perfectly well, I pass all my tests but I feel horrible. This is probably a good time to interject I have never been accused of “faking it”. A fact I really appreciate but it is frustrating to sometimes wonder at my diagnosis.

I do have an RA diagnosis

I have RA. I have had diagnosed rheumatoid disease for eight years. I did not disclose it at first but eventually incorporated it into my online persona. I became comfortable with it. Everything I do with my hobbies keeps this disease in mind. I feel like I have it, but what if I don’t? I don’t dispute I have an autoimmune condition. They all present pretty similarly. Who am I if I don’t have RA?

Do you have sero-negative RD? What are your insecurities? Let me know in the comments!!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • NancyJ2710
    1 month ago

    Both my sister and I can totally relate…Sero-negative results! We have found a wonderful Rheumatologist who goes the extra mile. I was diagnosed about 5 years ago with another dr., couldn’t seem to find the right meds. She was diagnosed later with our current dr. who was willing to take extra steps to fight for us and get us on the medications that WORK! Finding relief so that one can live a relatively average lifestyle and not be a prisoner to pain is huge.

  • funclutter
    3 months ago

    Interesting reading your article and other’s comments that have struggled with a diagnosis. It confirms something my rheumatologist said to me about my experience with whatever I have. I finally went to a rheumatologist about 15 years ago due to overall stiffness but at that time low back pain that wasn’t getting better. Having some medical knowledge, I knew it was in my sacral region and wondered about the beginnings of a type of arthritis. I didn’t know at the time I was seeing one of the top rheumatologists in the country. He was very thorough. Bloodwork was seronegative for RA and negative for other inflammatory markers. My white blood cell count has always been a bit low but normal for me as it’s been like that at every year’s physical. However I was positive for HLA B27 gene, which could put me at risk for ankylosing spondylosis. Being female, he said were I to develop it, I would probably have a milder case than if I were male. At the time he gave me an RX for Voltaren to use as needed. Talked about some of the more powerful drugs but I wanted to wait until we had a better idea what I had. My symptoms started in childhood at about 10 with random finger and toe swelling, always at Christmas time. Would last till about March then gradually go away. The doctor at the time said juvenile RA but says I’d outgrow it. By 15/16 it did stop and no more symptoms till I was in my 30’s, then my feet hurt so bad, but I bought better shoes and arch supports and that kind of took care of it. Then in my 50’s the lower back started aching and stiffness with a spell of bi-lateral joints aching like shoulders, hips, knees, etc. And random fingers infrequently but nothing terrible. After all my history the rheumatologist said…You are not the classic RA, or psoriatic arthritis or even ankylosing by pure definition. He said you have some kind of inflammatory arthritis that comes and goes with long periods of remission by history, and said there’s at least 100 other kinds of arthritis that have no name yet. Since I felt good at the time and my symptoms were controlled, I opted not to start any other medications at that time. Since then I have had some finger/thumb stiffness but it is more osteoarthritis related. I am getting toe pain in different toes that puzzles me. Some days I’m stiff all over but loosen up after getting up and moving. Yoga, chiropractic and massages helps. I do take some supplements that help with inflammation. Both parents were arthritis free but my paternal aunt had arthritis all over especially in her spine and hands. I worry that I won’t be able to use my hands so try to keep them moving no matter what. I do have some compounded pain cream that works really well too. I’m in my mid-60’s now and I do feel whatever I have is becoming a bit more frequent in flares but so far I can still control it with OTC’s and the other things I’ve mentioned. I will probably have a re-evaluation soon as it could be I do have a variant of RA or PSA after all and in the 15 years there could be more clues to what I really have.

  • dgoossen
    5 months ago

    I have zero negative rheumatoid arthritis. Thank you so much for your article. I am still looking for “proof” in my bloodwork that I have RA. It doesn’t bother me as much as it first at first. 5 years have gone by and I manage my pain and stiffness somewhat successfully with humira. I do experience flares and the newest addition is psoriasis ☹️ Not fun. It’s nice to know there are people that feel like I do! Thank you

  • David Advent moderator
    5 months ago

    Glad this article resonated with you @dgoossen! I wish you the best on your journey with RA. -David (RheumatoidArthritis.net Team Member)

  • gigiluvsgkids
    5 months ago

    My gosh I’m so thankful for this particular article. You and I could be twins!! I have had the exact same issues with my diagnosis. I was diagnosed in 2011 with RD but it took my Rhuemy a year to find because I’m seronegative as well. My frustration now is I moved to Florida, which is a horrible place to get good health care, every doctor I have been to has questioned my RA! It’s very frustrating especially when you have a flare that keeps you in bed for 2 whole weeks. I haven’t slept more than 3 hours since March! HELP!! If you have an email where I can get advice about where to go from here besides moving back I would greatly appreciate it!! I need to live again and feel like I’m starting all over. I don’t want to move back to the other side of the country not to mention it’s to cold and a high altitude which never helps

  • Kelly Dabel moderator
    5 months ago

    Thank you for commenting and sharing your story gigiluvskids. So glad this article was helpful to you and hopefully reminded you that you are not alone in this. In addition to speaking with your doctor, this article on Rheumatoid Arthritis and sleep may be helpful to you: https://rheumatoidarthritis.net/living/the-magic-of-of-sleep-hygiene-and-where-it-fails/. Please reach out anytime with questions, we’re here to support you. You may also like to comment on our Facebook page where you may receive additional feedback from our community. Wishing you some relief and better sleep ahead. Best, Kelly, Rheumatoidarthritis.net Team Member

  • tim29
    5 months ago

    Hi guys. New here. Im 27 and have been experiencing joint pain for about a year or so. Recently went to see a rheumatologist a few months ago in January of this year, but bloodwork came negative for RA, also wasnt shown in XRays. First noticed redness on my knuckles in the mornings as well as sweaty palms in the mornings. But on certain days id get pain in my hands, noticed when driving, as well as in my feet. Also while at work in the mornings ive felt really fatigued even though i slept around 8 hours. But more recently ive also experienced bad night sweats where id wake up soaked, and then very stiff in my neck, shoulders, back. Would last around a week and then slowly gets better.

    Seeing my rheumatologist again in late July. Havent been diagnosed yet. Currently not taking any medication besides advil here and there. So im not sure if what Im experiencing is sero negative or because of my age RA hasnt been detected yet? Just wanted to share.

  • Louise1024
    5 months ago

    I am RA negative as well, but I tested positive for anti-ccp. It is a blood test. Most people who test positive have RA. My hand xrays showed no damage to joints. Dr put me on a biologic.

  • CLS69
    6 months ago

    I am 69 and up until 6 months ago a long distance runner. In early December was running, hit a patch of ice and twisted to avoid falling. The next morning woke up hurting all over. Week arms and swollen knees that I couldn’t bend. I was initially diagnosed with bilateral strained MCL ligaments. Over the next few months got worse instead of better and started having stiffness in ankles , wrists. Shoulders and thumbs. A blood work up showed high sed rate and platelet counts. MRI of knees showed lots of inflammatory processes.going on. The orthopedic Dr said my problem is an underlying condition such as late onset RA since multiple joints involved. RA factor was negative although my maternal grandmother passed away from complications of RA. The ibuprofen I was taking was not working since I was taking only 2oomgm every 6 hours per bottle instructions. When I wore off I had mild fever and chills and hurt all over. I am now taking prescription strength naproxen which is helping but Dr only gave me 4 weeks worth. I have an appointment with rheumatologist in a couple of months. I have enjoyed reading comments since so many of the comments are exactly how I feel. I am having less teary episodes since I am seeing answers..

  • AMouring
    7 months ago

    I never had an official diagnosis. I saw in my chart from my current Rheumotogist that I have RA and sometimes he puts “poly arthritis”. I have been told many times that I was faking it and they would give me steroids. I then gained weight as a result. Then they would tell me to lose weight as that was the problem. The current Rheumotogist doesn’t tell me anything but he treats the symptoms. I never had methotrexate, but I have had sulphalzine to treat the SRA. I have been to a few doctors and my blood work is always immaculate. My SED rate is almost always normal but my hands are like the pillsbury dough boy when I am not in a full flare. I have essentially self labeled myself. I have had 3 knee surgeries including a total knee replacement, and an ankle surgery. I always feel like I am cheating when I write RA on my list of diseases but I know I do. My mother, a nurse recently attended a conference on RA, she confirms it.

  • Kelly Dabel moderator
    7 months ago

    We appreciate you taking the time to share AMouring. I know others here in our community can relate to your story, especially when labs don’t always match symptoms. Sounds like you have a great support system in your mom. Please reach out anytime, we’re here to support you. Best, Kelly, Rheumatoidarthritis.net Team Member

  • barbara l
    7 months ago

    I have had seronegative RA since 1991. Sometimes I have few problems and other times I cannot use computer and can barely walk. I had 8 and half year remission and currently struggling with it again. Take Methotrexate . I have had biologics and opiates in the past.

    When I changed doctors, he confirmed diagnosis. Use slight radiological changes in hands and other places, history, inflammation noted by blood work and symptoms. Good luck.

  • Kelly Dabel moderator
    7 months ago

    Thank you for commenting and sharing what has helped you barbara. Sorry to hear that you are struggling lately. Sending positive thoughts your way for relief ahead. Best, Kelly, Rheumatoidarthritis.net Team Member

  • Madhura Duttagupta
    7 months ago

    Hi Monica,
    Thank you for sharing this. I was first diagnosed 5 years ago. Back then my blood work was positive and the symmetric joint pain and stiffness which was worse early morning but usually got better as the day progressed was determined to be RA (by two different specialists, since my mom wanted to be doubly sure!). Since then a lot has changed. Currently my blood work does not support a RA diagnosis. So I’ve been off Methotrexate for nearly two years now. But I still have joint stiffness every morning. It’s always difficult to bend my knees and climb stairs. I’m a scientist so have to spend long hours at a bench, which does nothing to help my discomfort while gripping and pipetting.
    I love to cook but sometimes I just cant stir the pot or use the knife. But my X-rays don’t show any joint deterioration. And there is no noticeable inflammation. It’s frustrating and infuriating because my doctors have now tested for lupus, carpal tunnel/cubital tunnel etc. I’ve seen doctors in rheumatology, sports medicine and neuro departments. No one can confirm a diagnosis. So I identify strongly with the emotional crisis of living with an unknown condition. I too have never been accused of faking it. But all that really means is that I get sent home every time with a bottle of painkillers and a bunch of lidocaine patches. Some days I hold off on the pain killers for as long as I can since I’m afraid of developing a dependence on them. I’m insecure every time I have to life a heavy rotor in lab as being viewed weak. I might be feeling crappy physically but I always show up at every social commitment of my department, and even organize a few because I refuse to let my pain define me. I have cried when I wanted to complete an group workout but 5 minutes in, my feet were on fire and I had to sit down. At age 26, I feel this journey has taught me some profound things. That sometimes no news, is not good news. That sometimes just knowing what is wrong with me can be a much bigger relief than any possible future medical resolution can provide.

  • gigiluvsgkids
    5 months ago

    You are not alone for sure. I struggled for 11 years not understanding what was happening before getting my diagnosis. One thing I can say is it absolutely helps to know what is ailing you so you can empower yourself with knowledge on ways to help. Thank you for sharing.

  • Kelly Dabel moderator
    7 months ago

    Thank you so much for sharing your story Madhura. So glad this article was helpful to you. You are not alone here. Love your positive attitude! We appreciate you sharing and being part of our community. Wishing you some relief ahead. Best, Kelly, Rheumatoidarthritis.net Team Member

  • karenb54
    7 months ago

    Thank you for sharing this. This group has been an awesome tool for me. Although my diagnosis is new (3 years), I still doubt that I have it, I try to fight the fatigue, I overexert myself all the time so that I can “prove” to myself I’m perfectly healthy!!! There are some days that works but most doesn’t.

  • Franki King moderator
    7 months ago

    Karen,

    I do the same thing, where I convince myself that I am fully capable of doing most things that a person without RA can do. I think as long as I know my boundaries then it’s okay to fight the disease. You always deserve a break, though! I’m so glad to hear that this community has helped you! It helps me a lot too. Wishing you more healthy days.

    -Franki (RheumatoidArthritis.net Team)

  • michelle1771
    7 months ago

    I’m also seronegative. With RA diagnosed 10 years ago. I run the fevers, have swelling and pain and red joints during flares, ridiculous fatigue at times. Have even had inflammation in my chest and ribs and lungs. But nothing horrible in my bloodwork. I’m thankful doctors don’t doubt me, but I often doubt myself. Do you ever ask yourself: “what if it’s something else? why can’t they have a concrete diagnosis that’s backed up by bloodwork?” I wonder someday if they’ll finally say it’s lupus because of the fevers and skin rashes. Or if they’ll say it’s nothing at all. Maybe an infection of some sort that was never pinpointed. One rheumatologist even did a sleep study thinking sleep apnea might be to blame? Nope. I struggle to accept my diagnosis as you can see. And it’s been 10 years.

  • EmmieL
    7 months ago

    Michelle, you could be me. So frustrating.

  • lindajumper
    7 months ago

    The doctor is certainly looking at other factors if you’re sero negative. I am SN, on Xeljanz and since it’s effective, I can see the differences in labs. What are your Sedimentation rates? What’s your C reactive protein? The sed rate is particularly telling in autoimmune diseases. All of my lab indicators of inflammation have improved since being on Xeljanz. They did not on methotrexate. I finally feel like my diagnosis is valid. Though the damage is done (vascular, joint and ligament surgeries, infections, etc) I know my med is doing its best. Ask your rheumatologist to show you those lab values I mentioned.

  • Dana Williams
    7 months ago

    Thank you SO much for posting this! Your story is mine almost to the letter (except I think I’m quite a bit older and male). I’m a veteran whose “RA?,” as my rheumatologist records in his notes, re-emerged after decades of being in remission. I have been dealing with its active persona now for over 10 years, and I have gone through most of the shopping list of RA meds. I have been responding well to methotrexate and Xeljanz (with Tramadol for pain) for the last two of those ten years.

    I have never been accused of “faking it,” and have received the “nod” for RA from three VA rheumatologists. As are all of our stories, mine is a lot longer than this, but for the purposes of this topic I will simply say that it would actually be somewhat of a comfort to have that iron-clad indicator. As you so well say, “Who am I if I don’t have RA?” Again, thanks for sharing this.

  • Louise1024
    7 months ago

    I have seronegative RA, but never had the swelling of hands ,feet, etc. I was diagnosed with PMR at that time, causing severe pain in my hips, shoulders and neck. My CCP was high, which is a more accurate marker for RA. My rheumatologist then started me on Dmards. I also had severe osteoarthritis in both hips. Strangely though, I was hiking in Utah a month prior to this mess. Last year I had two hip replacements.

  • Sheila64
    7 months ago

    There are so many people with sero-neg ra. There are tons of support groups online and lots of people have this. It’s worth a try. Don’t let doctors make you feel bad or make you think you’re crazy. This is a very real thing.

  • Dana Williams
    7 months ago

    Would you be willing to share the URL’s for any of these support groups?

  • KAcker
    7 months ago

    Same here, after 12 or more years I switched Doctors, blood tests done.. sero-negative RD, made me wonder so, ” why are my hands so swollen? this a joke? we took away some meds that we determined did nothing.. and here I am.. at times stiff, swollen, and made me believe that maybe previous drs did not know what they were doing.. however I know that is not the case.. ?

  • Demi1
    7 months ago

    Ok I’ve NEVER heard of sero negative RA-but that totally describes me! I can’t even say how many rheumatologists I’ve been to with the same beautiful lab work and no diagnosis. Is there literature on this?

  • Alesandra Bevilacqua moderator
    7 months ago

    Hi, Demi1! There are quite a few resources on our site about seronegative RA – you can check them out here: https://rheumatoidarthritis.net/?s=seronegative I hope this helps! – Alesandra (RheumatoidArthritis.net Team)

  • jlctucker
    7 months ago

    Hi Monica,
    I feel this way about my seronegative RA all the time. I was diagnosed with JIA when I was 15. I am now 45 years old. I was initially diagnosed when my knees swelled up like water balloons as did my wrists, and I could not walk or brush my hair or dress myself. It’s pretty awful when you can’t dress yourself at 15. Anyway, the RA doc aspirated fluid off of my knee and diagnosed me with juvenile RA (JIA). My sed rate was also elevated. After three years of gold treatments, I was in remission.

    Four years ago, after my dad passed away, my joints were killing me, as were my muscles. It was excruciating. I went to my primary doctor and my sed rate was double the normal level. He referred my back to a rheumatologist, and she ran all kinds of tests. The sed rate had normalized by that time, and all of my blood work looked fantastic. I did not have any swelling in my hands, and she said she was going to diagnose me with sero negative RA, because apparently I “read” RA,but my blood work doesn’t show it. It’s crazy frustrating to me. I also wish something would come back positive, just for verification.
    My x-rays look good, blood work looks good. I’ve asked for ultrasound of my hands, but they won’t do it. I don’t understand, because supposedly US is very sensitive.
    I did have a vectra test done and it came back as showing my disease as moderately active. So that was something. I seem to respond well to the biologics I take, and labs show the arthritis is stable.

    I also have fibromyalgia and adrenal insufficiency, both of which contribute to fatigue and musculoskeletal pain. Because of these other illnesses I often wonder if I have a correct diagnosis. None of my doctors have implied or made me feel as if it were all in my head, or not real in any way, and I appreciate them for that. However, it’s hard not to doubt even though your thumb joints are sore, and you’re so tired by the end of your work day, you don’t want to do anything.

    Thanks for this article. It was great and I could relate to all of it.

  • pardyfalcone
    8 months ago

    I meant rheumatologist in the previous comment. Sorry. Sooooo many doctors lol

  • pardyfalcone
    8 months ago

    Have you had your endo do the Vectra DA blood work? Most of my bloodwork did not show a definitive answer for RA until they did this. It shows special biomarkers that can help definitely prove your diagnosis. It is rather new so he sure to ask your endo about this.

  • DeGee
    6 months ago

    Mine only shows up on the Vectra.

  • antyliny
    8 months ago

    Hi, I too have sero-neg ra, and erosive inflammatory osteoarthritis and osteoarthritis too. Spent many years struggling with pain and was told it was only osteoarthritis and actually had a rheumatologist day she wished she could wave a magic wand and it would disappear- but try extra strength Tylenol.sorry this is getting long but now have a wonderful team working with me. unfortunately my diagnosis was when an mri of my wrist showed inflammation and damage – just had a partial wrist fusion 9 weeks ago. Not a easy surgery for me . I take it very seriously because my beautiful sister was diagnosed with ra at age 70- it destroyed her lungs and other internal damage. She passed away last year only 4 years after ra diagnosis. Thank you for sharing your story

  • PennyOH
    8 months ago

    I was diagnosed with: Inflammatory Arthritis of the Rheumatoid Variety. I said so, RA? to which she repeated the above. 3 times.
    Sero-neg but with the signs/symptoms, except no damage. Palendromic was in the mix or possibilities for a while. After many (I don’t recall when that diagnosis was) years of vagueness and treatment for something ‘just in case’, this Jan my rheumatologist diagnosed PsA. I don’t doubt this at all, given current symptoms and flare.
    Is that it, then? That’s this inflammatory arthritis?
    So…can I stop looking around the corner yet?

  • Monica Y. Sengupta moderator author
    7 months ago

    Hey @pennyoh! Thanks for commenting on my article. I can imagine how frustrating it is to have your diagnosis change and evolve over time.

    Having a similar experience I often wonder if I have a blanket inflammatory condition that most closely (possibly) resembles RA. My mother also had an autoimmune condition that was treating like Lupus but was not exactly Lupus. The doctors used to call it “Lupus-like syndrome” because it didn’t fit neatly into any category.

    I guess this is something we have to deal with as we navigate the sero-negative world?

    Best, Monica

  • EmmieL
    7 months ago

    Penny, what made the dr “land on” PsA? It’s always been in the realm of possibilities for me. Clinical symptoms of RA and a joint fluid analysis showed WBC’s in the range of RA, PsA, and Lupus. Dr had not ordered a culture so couldn’t tell which.

    Diagnosed “officially” as Seronegative, but recent ultrasound of my hands shows no synovitis of the joints but severe tenosynovitis of the flexor tendons.

    Vectra DA showed in the Moderate range. I sent them an email asking if that was definitive for RA and they responded that it’s not meant for diagnosis (which I knew) because the markers they measure can be found in other inflammatory arthritis, such as PsA. So I’m STILL in never-never land and suspect I always will be. Father had psoriasis but I don’t. My initial presentation was also tendon issues in foot and ankle, resulting in 5 surgeries.

  • EmmieL
    7 months ago

    Wanted to add I am on Orencia and have a positive response to it so far.

  • Ann B Wall
    8 months ago

    At my Rheumatologist’s office ,I have met several people with severe RA -that are seronegative. Have you had Vectra DA test? Monica hope you are feeling well today

  • RAkaren
    9 months ago

    You are describing me! I have only been diagnosed for 3 years but I still question the reality of the disease. It doesn’t make sense that it would not show in my blood.
    I have been repeatedly shown by ultrasound and MRI of the telltale changes that confirm my RA diagnosis. The medications seem to help some. I have just started on Embrel – and have not seen any changes yet.
    I continue to question the reality that I am facing. It is too hard to explain to my husband what even I do not understand. He is trying, but I am struggling.

  • aja1
    9 months ago

    All of what you have written echoes deeply for me. I have great blood. It’s taken 3 years of great blood tests, mris (which in my case do show damage) and a million different specialists (all with different views) to get to the point that i most likely have “inflammatory arthritis” – they won’t give it a definitive name. I’ve started meds now and for me, that’s my guide to proving there’s something wrong even although I know there most definitely is and ive never been accused of making it up. The great blood has been so hard as i don’t have inflammation even when I visibly have had swollen joints. I’d much rather is showed so that I knew I could justify taking these drugs, even although actually, really, I know I need them.

  • Carlena
    7 months ago

    I too always wondered if it was a correct diagnosis. Most Rheumatologist told me it’s fybro go home deal with it. I then went to Rheumatologist number 3. Shortly there after I had a flare, the worse thing ever. I cried and begged to die for the 3 weeks I couldn’t make it out of bed. My Rheumatologist did all the blood work. It all showed normal. He was shocked to say the least. He looked at me and said “ I see this with my own eyes. It’s a duck. There is absolutely no doubt you are in a flare and we will treat accordingly “. It was a good day even though the flare was awful. Don’t wait if you really believe that’s what you have. The damage from this disease is a one way street.

  • suri613
    9 months ago

    i have sero-negative RA and was diagnosed a number of years ago. i suffer from stiffness, joint pain, fatigue, you name it! when my rheumatologist died i went to a different one who is skeptical about whether or not i have RA, though a biopsy of the bursa that was surgically removed from my elbow 3+ years ago revealed “palisading histiocytes typical of RA”. my new doctor diagnosed me with fibromyalgia, which i probably DO have as well. however, it’s extremely frustrating that my current rheumatologist is skeptical about the RA only because i am sero-negative and isn’t all that sure that what i have is RA at all. i definitely believe my initial diagnosis of RA and i do realize that symptoms of fibromyalgia and RA overlap, but it’s frustrating and annoying to be doubted by your doctor. i’m not planning on switching doctors because he obtained a license for me from the department of health for medical cannabis oil drops. not every doctor is able to fill out the paperwork requesting the cannabis oil and it helps significantly with the pains. if it’s legal where you live, you ought to look into it as a pain reliever. unfortunately, the drops don’t help with the fatigue. AAMOF, fatigue can be a side effect of the drops- but i don’t think that i’m any more fatigued after taking them than i was before. you are not alone. good luck.

  • spljoy
    9 months ago

    Thank you for writing this piece! I feel your pain and your angst. I had multiple diagnoses from multiple docs over the years and finally ended up at sero-negative RA and I have OA as well. That said I had joint damage in my hands which came to light when ultrasounds were done during a major flare.

    I’ve been blessed to have a great rheumatologist who has understood my issues with heavy-duty drugs. As a resultm, my symptoms are generally controlled for the most part with more modest drugs and doses

    As for fibromyalgia, my doc says everyone has it to some degree. He is not being callous, I think just acknowledging that everyone aches to some degree.

    Thanks again for sharing it feels lonely sometime living in this nether world!

  • BeckyKay
    9 months ago

    Thank you for the thoughtful and interesting post – as are all your comments. I’m also sero-negative for 20+ years. In addition, Osteoarthritis and Fibromyalgia. I have no joint destruction, but tendon damage, CAD and lots of visible inflammation. Finally the Vectra DA was able to measure the inflation and I was in the high risk range. It was so helpful to finally have a lab test to lean on for a DX.

    My PCP tells me I look like an old woman (shuffling walk, bent forward, slow moving, etc.). So my goal for 2019 is to try to get some motion back in my life.

    I’m taking the step of seeking another opinion on my disease and treatment. I’m going for a consult at Johns Hopkins Referral Rheumatology Clinic. They have a reputation as best in the US, so I’m willing to travel cross country to see if they can help with some answers.

    I’m on the last attempt with Rituxan for refractive RA (been through 6 biologics). So far it seems to be helping, but maybe there is a better answer for me.

    Take care, Becky

  • Richard Faust moderator
    9 months ago

    Hi Becky. Great to hear you are being proactive in your care and made the appointment for another consultation/second opinion. No one will look out for you like you. Don’t know if you have previously tried physical or occupational therapy, but I thought of it when you mentioned how your PCP described you. My wife, Kelly Mack (a contributor here) was diagnosed at two, had multiple joint replacements as soon as she stopped growing, and has used her wheelchair since her late teens. She also has consistently used therapy to maintain her strength, some mobility, and try to ward off further damage. In this article she discusses returning to physical therapy for refresher sessions, just to make sure she is doing what she can: https://rheumatoidarthritis.net/living/return-to-physical-therapy/. I’m sure aspects of therapy will be part of the conversation during your consultation, but thought it might be helpful to mention. Wishing you the best and, if you like, please feel free to keep us posted on how you are doing. Richard (RheumatoidArthritis.net Team)

  • Monica Y. Sengupta moderator author
    9 months ago

    Hey Becky (@beckykay)! Thanks for sharing your story. I really hope your appointment at the John Hopkins clinic helps you! I definitely believe that getting a second, even third opinion can make a difference.

    There have been a couple of times my rheumatologist and I were completely stumped with my symptoms. The blood work was normal, I had clinical symptoms and the medications were not working. He referred me to other rheumatologists just for a different perspective.

    While they weren’t able to tell anything more than my doctor it was good to get another pair of eyes.

    All the best and I would love to hear an update after your appointment! ~Monica

  • ncanterbury
    10 months ago

    I’ve been told repeatedly that my blood work is normal. Even with my hands and fingers swollen so I have trouble holding anything. My Dr will claim I can’t be in that much pain. I hurt from so many places I don’t want to list. Mornings are hard to get up and to get moving. My fatigue is overwhelming. I try to move and my body achs in response. So I crumble back. I realize I need to take something. I feel like I’m only half believed. That I must be a hypocrite. I’ve had RA for 16 years. The drs will run their test and always my diagnosis is RA. I feel that they don’t think I know what pain is and my body is lying. I was on Remicade but I needed some dental work so I’m now onPlaquenil. It’s not helping much. But I’m almost finished with the dental work. My last visit with the new doctor, he looks at my hands alone and says maybe I need to try something different. He examines me and hand me information on different treatments to read. He has my blood work done. Then in a few days the nurse will call and say my blood work is normal. This is so frustrating. My pain and fatigue is so that I don’t leave my apt for days. I’ve learned to buy TV dinners. I can cook but it seems too much trouble and the energy to clean up isn’t worth it. My dental work has lasted to long but has been delayed because I keep getting sick. I’ve been sick more than well. I’ve got appointments with my different drs, I want a plan to get well and stay that way. Wish me luck and prayers are welcome! 🙂

  • Monica Y. Sengupta moderator author
    10 months ago

    Hey @ncanterbury! Thanks so much for sharing on my article. I am so so sorry you’re dealing with so much right now. Anxiety and stress are huge triggers for me so I understand how that is impacting your condition.

    I just want to make sure I understand, the newest doctor you’re seeing is treating you for RA? It’s frustrating when doctors don’t believe clinical symptoms without positive blood work.

    I hope your dental work concludes quickly without any more illnesses! Please know whenever you need to talk or vent you can come here. We will listen. Gentle hugs and I’ll be thinking of you! ~Monica

  • aja1
    9 months ago

    Hello, i so feel for you and your story sounds similar in many ways to my own. I hope you get answers soon.
    In relation to dental work, i wanted to just highlight that in my own case I have a rare form of tooth reabsorption, which they are now considering may be linked to my inflammatory arthritis. There appears to be little to no research in this field so it’s not definite but the issues with my teeth started around the same time as my joints. Depending on your issues, it might be important to make sure your health providers are linking in with one another. The multiple issues I have certainly helped with being treated.

  • JoanHamm
    10 months ago

    I have had sero-negative RA for 28 years. First rheumatologist was skeptical and prescribed Indocin, an anti-inflammatory. A year later I had a bleeding ulcer and a new doctor. New rheumatologist did all the same test work. He saw my swollen hands and unhappy knees. His comment was “Well, if it walks like a duck, and quacks like a duck, it must be a duck!” I was lucky!

  • Monica Y. Sengupta moderator author
    10 months ago

    Hey @joanhamm! Thanks so much for sharing on my article.

    I am so sorry you had to go through that first experience. Ulcers are never fun. I am glad you like your second rheumatologist. A good doctor makes all the difference in the world when managing this disease. May I ask, what medications are you on for your RA?

    ~Monica

  • JoanHamm
    10 months ago

    I am currently on Remicade and Arava. This combo has really worked for me. Add periodic injections for chronic bursitis in hips, knees, elbows and bone spurs in feet. I call myself the Queen of Cortisone! It helps that my Rheumatologist more than 40 years of experience. He swears he has no intention of retiring and the university can’t make him!

  • jdaph
    10 months ago

    yes I to am sero negative R.A. but I have glaring symptoms of R.A. swollen joints, in fingers, knuckles, hands, feet, ankles, hips are hurting more and more all the time, knees,, you name it.. it sometimes gets frustrating because the medical community is so geared toward having to have positive blood tests before they will diagnose anything, and never take into account family history,, symptoms,, ect…. I get most of my help with the symptoms from alternative treatments.

  • Monica Y. Sengupta moderator author
    10 months ago

    Hey @jdaph! Thanks for commenting on my article! !

    I am so sorry you have had so much trouble getting a diagnosis! I know what you mean though, so many doctors just rely on blood tests. I am extremely grateful for my rheumatologist who knows I have the clinical symptoms and treats them accordingly.

    May I ask…what are the alternative treatments that work for you? ~Monica

  • betharooski
    1 year ago

    I too have had zillions of emotions when I was told my labs were normal. That can be a good thing— we don’t want more abnormal stuff on our plate. However, I changed rheumatologists one time because I felt that I wasn’t believed. That was 20 years ago. Good riddance! Most rheum. docs have better research available to them than in the past. Hang in there! You are a valuable, worthy person who doesn’t need to show a scar or a broken bone/cast to be validated. Best wishes!!!!

  • Monica Y. Sengupta moderator author
    1 year ago

    Thank you so much for your lovely comment, @betharooski!!! It really is so appreciated. I’m glad you switched doctors. I seriously feel that a caring, empathetic healthcare team makes all the difference in the world when it comes to fighting this disease.

    Thank you again! ~Monica

  • betharooski
    1 year ago

    Count me in your group! My rheum says that I fly under the radar! I bet in a dew years the researchers will have a name for the bad boogers in our blood that cause rheumatic problems. I am a retired nurse. So——just think of the medical discoveries and new drugs that come out! There is hope!

  • Tiffilynn
    1 year ago

    So much, this.
    It is ridiculous to feel like a second-rate patient without positive markers. My rheumatologist never made me feel this way. I was clinically diagnosed also with positive outcome on aggressive therapy. Yet, still the voice in the back of my mind when I hear your labs look great (other than my low blood count that is chronically low) that asks “do you really have this disease?”
    I still fight this voice after 10 years and multiple surgeries.

  • Monica Y. Sengupta moderator author
    1 year ago

    Hey @tiffilynn! Thank you so much for sharing on my article!! I am so glad you have a rheumatologist that works with you and is keen on aggressive treatment!

    When there are so many physical indicators I just wonder why our blood tests don’t show anything! I wonder what the biology behind it is?? Thanks again! ~Monica

  • Monica Y. Sengupta moderator author
    1 year ago

    Thanks @tiffilynn! It’s so frustrating, isn’t it!! The same thing happens to me — we made a point of getting blood work during a particularly bad flare and of course, it all came back normal. ::smacks head::

  • Tiffilynn
    1 year ago

    I wish I had those answers Monica. I can have smack you in the face- visible (you would say “gosh, what happened to your _____ “ fill in body part ) inflammation and still not any real movement in my sed rate. Strange thing the body. Gentle hugs to you.

  • winterwaters
    1 year ago

    Thank you for writing this!!

    I’m going through this as we speak. I’m so lucky and happy to have doctors who have believed me all along, but I was worried I was crazy. I’m in between diagnosis right now. I could have either RA or lupus. My bloodwork looks great as well just some mild inflammation markers. The rheumatologist put me on Plaquenil after my consultation, I was so scared I was going to be left with nothing and stuck with unending pain with no foreseeable treatment.

  • Richard Faust moderator
    1 year ago

    Hi winterwaters. First, let me echo Monica’s sentiment that it is great news that you are feeling better. Lupus and RA are both autoimmune and share many traits in common. In addition, they can often be comorbid conditions. This article from our editorial team looks at lupus and RA: https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/lupus/. Hope you get some more answers soon. Best, Richard (RheumatoidArthritis.net Team)

  • Monica Y. Sengupta moderator author
    1 year ago

    Hey winterwaters!! I am so glad you are on medications that are helping!! I totally get what you’re saying…Sometimes, I just think I’m crazy too! But, as @k4rand mentioned below, we do know our bodies and we know there is something wrong…

    Thank you so much for commenting on my article!! ~Monica

  • k4rand
    1 year ago

    I feel the exact same as you.. I too have sero negative RA.. blood work always comes back normal.. I have classic symptoms.. I’m on Plaquenil and Humira.. it helps but there are days that I feel like nothing will help.. on the days I feel good, I question the diagnosis.. on bad days which are many.. I don’t doubt it.. it’s hard for people to understand without proof of abnormal lab tests.. my Dr did an ultrasound on my knees and drew out fluid from both.. she said there’s the diagnosis there..the synovial joints were full of fluid.. still I question the normal labs.. I am in the same boat as you.. hang in there.. we know what we have and how our bodies feel.. one day at a time

  • Monica Y. Sengupta moderator author
    1 year ago

    Thank you so much for commenting on my article and for the lovely kind words, @k4rand! I am so glad you have medications that help…What do you like to do during flares? I, myself, get stir crazy so I always keep aside things like books or coloring to keep my mind off the pain.

    Isn’t it funny how the body works? Your blood comes back normal but you obviously have inflammation..Shouldn’t it show up on the tests? All the unanswerable questions in life…

    Thanks again for sharing on my article!! ~Monica

  • Mary Sophia Hawks moderator
    1 year ago

    Yes, I have sero-negative RA. My RA was confirmed when I had a knee replacement, and the lateral side of my joint had been destroyed by RA. One year later, the VECTRA DA test came out. Finally, I have a lab indicator of my disease. If you have not had this test, ask your MD about it.
    You are still yourself, despite what your diagnosis is. Never forget that! Your disease does not define you. It may alter your life, but it does not define you.
    MS

  • Monica Y. Sengupta moderator author
    1 year ago

    Thank you for the uplifting comment, MS! It’s funny how I sometimes let RA define me. I feel like it just seeps into every part of my life. But, you are so correct, that it doesn’t and with or without it I am the same person. Thank you 🙂

    I did take the Vectra and that came out negative as well!! I was so excited to have a test and then it wasn’t helpful either; though, it has been a few years since I last took it…I will ask if I can take it again. Thanks for sharing on my article. I really do appreciate it! ~Monica

  • tmbrown51
    1 year ago

    I am also sero-negative and received the same semi-RA diagnosed in Jan 2018. After many months, Tramadol and Arava finally helped with most of the pain and joint discomfort but my ankles still hurt. Predisone did not work for me. I was on that last year for my carpel tunnel, which I found out is related to RA. Looking back, I also had other health issues in 2017 that were related to my RA (jaw bone loss, hearing loss, etc.) but I did not know it.

  • Monica Y. Sengupta moderator author
    1 year ago

    Oh no, tmbrown51! I am so sorry to hear that you were in so much discomfort for so long and experienced some losses along the way. You mentioned the carpel tunnel and that reminds me very strongly of my own journey. I was diagnosed soon after a tendon in my wrist swelled up. Little did I know that was the precursor to my diagnosis.

    I am glad you have found some relief! How long have you been on Tramadol and Arava? Thanks for sharing on my article!! ~Monica

  • Jo J
    1 year ago

    I think the most frustrating times in my life may have been when my first (not current) rheumy told me “I don’t agree with your symptoms.” Positive RA factor and great response to steroids. But she didn’t agree. The doubts she planted come back every once in awhile. Is this RA real? Then I remember, US results show synovitis in every joint they image.

  • Monica Y. Sengupta moderator author
    1 year ago

    Hey J0dspace! So, that actually kind of confuses me…Why did the doctor say that? Did she at least still treat you as though you had RA?

    But I agree, with these kind of conditions even if we have very strong evidence just a seed of doubt takes hold quickly.

    Thanks for commenting on my article!! ~Monica

  • lindajumper
    1 year ago

    I’m sero-negative and I’ll just say it: I want to be sero-positive, to know for SURE!
    I, too run through the garden of possible diagnoses. RA is a diagnosis of exclusion, at best! I’ve read that if you respond well to prednisone, you may have polymyalgia rheumatica. I respond well to prednisone but now can’t withdraw from it! What’s frustrating is the series of symptoms leading up to this diagnosis–fibromyalgia, joint deterioration, low grade fevers…ALL belong to other diseases, as well!
    Oddly, the sedimentation rate, (ESR) dropped beautifully after half dosage of Xeljanz but…I don’t feel better and my bp took a hit! So what happens when your labs improve….but your pain doesn’t and you’re still…SERO-NEGATIVE!!

  • Monica Y. Sengupta moderator author
    1 year ago

    Lindajumper!! I related so much to this comment and I felt the frustration right there with you. The problem with all these autoimmunes is they have very similar symptoms! My mother had “Lupus-like syndrome” because her condition fit Lupus the most, but not actually. Shrug. I am glad the Xeljanz is working for you…Are you going to continue with it?

    I figure that even if respond to all the meds at least I also respond to the biologics, but now they are coming out saying they work for multiple conditions too!

    Thanks for sharing on my article!! ~Monica

  • rebeccav
    1 year ago

    Hi Monica. Let me just say I always enjoy your posts. I had the opposite problem. I have tested positive for RA starting 20 years ago as a mother of 2 young children. My family physician tested me and said my levels were through the roof positive coupled with excessive pain, fatigue and chronic anemia. The rheumatologist saw no outward visible swelling in my hands so I was told I did not have RA and it was most likely Fibromyalgia. I knew in my gut that I was staring something serious in the face but was too afraid to fight for my case. I have since had my big toe fused due to a destroyed joint, shoulder reconstruction due to deterioration and may now be facing hip surgery. It wasn’t until my hands showed visible swelling and contorting 5 years ago that an RA doctor took me seriously. My advice is go with your gut. Only you know how you feel. I was basically told it was in my head. Being young and naive I accepted that diagnosis only to wind up with unnecessary permanent damage not to mention years of grinning and bearing my “made up” pain.

  • Monica Y. Sengupta moderator author
    1 year ago

    Thank you so much for the lovely compliment, RebeccaV! You have no idea how much it means to me. (I spent a long time feeling very isolated because of my RA and knowing that others enjoy what I write about helps me know that I really am not alone!)

    And thank you for the advice, like you I strongly believe we are our own best advocates and I have learned to speak up for myself with this disease. I also wanted to bury my head in the sand at the beginning but thankfully I had a doctor who said “no, you need to start these medications now”.

    Thank you so much for sharing on my article!! All the best and gentle hugs ~Monica

  • Oscarblue
    1 year ago

    I began having severe knee pain in my early 20’s as a young nurse and mother. A orthopedist started me on anti-inflammatories and when he did an arthroscopy on my right knee, I asked to check for RA. He didn’t see signs of it and my labs were fine.
    The next twenty years were of increasing joint pain, but I was fortunate in having a Dr. who felt it was a inflammatory arthritis and started me on methotrexate. The first rheumy I saw took one look at my labs, and said “You don’t have RA, why are you here?” I was furious but my MD sent me to another rheumy who told me my labs were fine, but that didn’t mean it wasn’t RA.
    Part of the reason RA was on my radar was because my father had been diagnosed with RA and died of pulmonary complications. I didn’t “want” RA, I just wanted to be doing the most I could to minimize the damage.
    The most affirming moment was when I had bilateral knee replacements and the ortho told me the damage was definitely inflammatory.
    Long story shorter, my diagnosis is still seronegative inflammatory poly arthritis. The most important issue for me is that I have been treated aggressively and joint damage is still minor because of that. I am currently on methotrexate, Plaquenil and Humira with prednisone bursts for flares.
    The nagging doubt that I was being a wimp or imagining my symptoms was gone and I just focus on dealing this disease whatever name they want to tag on it!
    Keep your chin up and be your own best advocate for YOUR health. Best wishes!

  • Monica Y. Sengupta moderator author
    1 year ago

    Oscarblue, thank you so much for the lovely comment!! It really reminded me that we do know our own bodies and no matter what is going on we know when something is not right and we should address it, in any way that we can.

    I also take MTX and as much as I wish I could say I don’t like it, I really love it. I feel an intense difference when I don’t take it and I do contribute my good joints to it!

    Thanks so much for commenting on my article! I reallly appreciate it. ~Monica

  • Lisaw
    1 year ago

    I sound exactly like you except I was diagnosed with Sygrens also. I have minor swelling in my right hand. Any pain I have is all right sided. Right hand, fingers, elbow, foot and toes. Minimal swelling but tons of fatigue. My blood work is all good except CRP is just a tiny bit elevated. I question daily if I really have RA or not.

  • Monica Y. Sengupta moderator author
    1 year ago

    Thanks so much for sharing on my article, Lisaw!! Isn’t it so frustrating how we get into our own heads about this? I know for me I wish I had some affirmation that I am in pain, that I do experience swelling and so on and so forth. From someone who has the same questions as you, I know it’s not in your head!

    Please reach out any time! Thanks again, Monica

  • rockcandi
    1 year ago

    I have sero neg JRA. A few doctors (rheumys) have diagnosed Lupus as secondary along with Fibromyalgia, Sjogrens Syndrome, & another I can’t remember. (It’s actually considered Mixed Connective Tissue Disease but none of the docs have ever diagnosed it that way); two doctors said I have JRA and Fibro but not Lupus; & my current Rheumy has told me she knows I have JRA but she’s not convinced I have Lupus but she’s not convinced I don’t have it either. I do have positive ANA and I think there are only a few autoimmune diseases that cause that but I’m not positive. Twice I’ve been told by my rheumys that they’re not sure how to diagnose me bc they know I have JRA and they are convinced I have another autoimmune disease but they don’t know what for sure. The first one I ever had, she told me she was truly baffled and the one I have now after doing blood work and brain MRI and X-rays told me “You’re a puzzle my dear.” (I LOVE my current rheumatologist.) At the beginning of my adulthood journey I was basically accused of faking it by my doctor at the community clinic that I had to see bc he was all I could afford with no insurance and a low paying daycare career. He didn’t come right out and say it but that was obviously what he believed. 7 years later when I got a new doc at the community clinic she seemed to believe me right away, had blood work done, found the high positive ANA and sent me to the university hospital. She later told me however that when I first came to her and I had checked 3 quarters of the boxes on the page containing the long list of symptoms she thought I was trying to get put on pain meds. (They were a huge problem in my town at the time so she probably saw it a lot.) But, she said when she saw my blood work she knew I was sick. (She’d told me she was 100% sure I had an autoimmune disease.) It was still a couple years before I was able to be formally diagnosed. My rheumy at the university hospital (I loved her too!) told me she could see the evidence by looking at me and by my X-rays and later an MRI but she wasn’t able to diagnose me until she could prove it with my blood work. I hadn’t seen her for almost a year by the time I had a horrible and debilitating flare. When I was finally able to get back in to see her (3 months waiting while flared so badly!) she said You’re 100 % worse than you were last year! And shortly after we had the convo on the phone that she was baffled but based on some of the blood work and my symptoms she was going to diagnose me with JRA and Lupus. My biggest concern isn’t whether I have JRA or not. I truly believe I do. After all I was in the hospital for a week at 6 years old while they did every blood test imaginable before diagnosing JRA. But I’m convinced I have some kind of neurological autoimmune disease and that it’s getting worse and worse but my rheumy has given up on trying to find out what else is going on. Geez Monica, I’m sorry! Every time I comment on one of your articles I seem to type a whole novel! Btw, whether you have RA or a different disease, you are still Monica; a caring, funny, light hearted, sweetie who loves her life and relationships with the two and four legged friends/family in her life, despite many hard struggles. Just stay proactive, voice your concerns to your doctor, & work with what you have to fight the symptoms of whatever is trying to wreak havoc with your body/immune system.

  • Monica Y. Sengupta moderator author
    1 year ago

    Hey!!! Are you kidding?? Never ever apologize for sharing your story!! I know we both have completely different experiences but I love reading your comments because I feel like I relate to your energy and outlook on life.

    I am sorry you had to go to so many doctors over the course of your diagnosis. I believe that continuity of care makes a huge difference in how we live with this illness. I am also really sorry you’re dealing with a potentially very different autoimmune. Don’t you wish that sometimes our chronic conditions fit nicely into their descriptions? It would at least make some part of this process a bit easier (a bit!)

    Thank you so much for the lovely compliments. I needed it today. I am working on a new article about why/how I’m feeling a bit low.

    Thanks again, rockcandi!!!! 🙂

  • Vaash
    1 year ago

    Reading your post and being able to relate is such a relief.

    Firstly I am so sorry that you have to go through this. It’s frustrating .. I know .. my blood work is healthy and so my X-rays have come back as normal.

    I am on prednisone and a whole bunch of other medications for arthritis and gout but I haven’t been given a diagnosis yet so I am going to get a second opinion soon but to get a booking with the top specialists in South Africa is difficult.

    Have you done a ultrasound or mri yet? I’m thinking these are my options to get some sort of clarity on what I’m going through at 29 years old and to give myself some sort of peace of mind.

    I’m fine (70% of normal) for a few hours every day then towards the afternoon/evening my ankles (especially my right side), my knee, my elbows and wrist start getting really sore or start locking and then late evenings or early morning I get like a numb tingling feeling in some of my fingers and I get such a sharp chest pain sometimes when I try sitting up, have you experienced these things as well?

  • Monica Y. Sengupta moderator author
    1 year ago

    Hey Vaash! Thank you so much for sharing on my article! (Btw, we are very close in age – I am 28). I’m glad your doctor put you on medications right away but I’m sorry you did not get a diagnosis. That is extremely frustrating!! I have experienced some of these symptoms and some of them (for me personally) have been due to unrelated conditions or injuries. Have you spoken to your doctor about these new symptoms? S/he should be able to help you find out if these are side effects, symptoms of the RA or completely unrelated!

    Have you done an MRI or Ultra? I had an MRI for my back specifically that did not show anything and I have not gotten an Ultrasound.

    ~Monica

  • NPEOttawa
    1 year ago

    You are my twin. 95% the same. Beautiful blood, little swelling (right middle knuckle area), no fevers (lots of night sweats though), Xrays and MRI of right hand shows little – MAYBE some minimal deterioration in 2 small areas. Diagnosed on clinical symptons alone. Now kicking around the idea of fibromyalgia. Lots of joint pain, esp hands and feet (3 on a good day, 7 on a bad one), esp at night, worse if I’ve used them a lot (e.g. driving!) but the rest of the joints, and even some muscles, get into the act sometimes, esp when the barometric pressure is falling. Methotrexate helps some. (leflunamide didn’t.) On Tramadol with Tylenol for pain. Helps some I think. (one difference – don’t think prednisone (10 mg) helps) Trying Celecobix now. Haven’t tried Orencia. Doctors don’t accuse me of faking anything, but I don’t tell others that it’s seronegative cause I’m afraid they will. It’s been about 2 years now. It’s not all in your head, cause I know it’s not all in mine! But is it RA?? There doesn’t seem to be another known condition that fits. Perhaps I won the triple stakes and it’s RA, OA, and fibromyalgia! I do have some OA in places. I have noticed that my fingertips tingle frequently, and the outer joint on the fingers hurts as bad as the rest of them sometimes. They assure my this is OA, not RA, (in which case they must coordinate the attacks 🙂 I was checked for carpel tunnel syndrome as I have had surgery for that in the past, but it was negative) Currently I have 2 trigger fingers and another is starting; I’m waiting for cortisone injections. My newest Rheum. seemed interested in the fact that I have had endometriosis and I am reading now that there is a significant correlation. Do I want this to be RA?? Well, I’m afraid that if it is not, it is something worse. But if it is something else, there may be drugs that help more. Or it may go away? I wish there was no question about the diagnosis, but I am acting as if there isn’t until I know differently. And after 2 years, I’m still reeling from this diagnosis, and in a bit of shock about the incurable part.

  • Monica Y. Sengupta moderator author
    1 year ago

    NPEOttawa – Hello twin!! I felt like I was ready my life through your comment! Though, Prednisone has helped me a lot. OA and Fibro are two common co-morbid or co-existing disease with RA. I thought this article (for the comments) might interest you. Many of our community members share the diseases they have in addition to RA. https://rheumatoidarthritis.net/q-and-a/other-condition/

    My doctor’s also played around with Fibro because during a particularly difficult flare everything hurt. The pain radiated from my joints and through every body part. However, once that flare passed I didn’t feel the widespread pain so they stuck a pin in that.

    If you ever want to chat or need some support please come back! We are here for you in the good and bad times. I’d love an update on your conversation with your rheumatologist! All the best and thank you so much for sharing on my article!! ~Monica

  • NPEOttawa
    9 months ago

    Hi there, Monica! Nice to see this article again today. Not too much has changed for me in the past while. Off the celecoxib now, tried plaquinel for 6 months, now starting on sulfasalazine. Next stop, Biologics, I guess. I’m starting a course from coursera on-line called, “Fundamentals of Immunology – Death by Friendly Fire.” I’m a medical lab tech (retired) and ironically, have always found autoimmune diseases fascinating. Learning about this one in detail, and keeping current on the research helps me deal with it better. But I do have periods of depression where I find it hard to exercise at all, eat well, stay social, and all those other healthy things that I know help when I can get myself out of bed to do them. I live one day at a time, or even one hour at a time, and I pace myself and try not to feel angry at my body. And when people ask how I am I try to just say that some days are better than others, rather than overloading them with specifics and then feeling awful about being a whiny, self-pitying bore. And that’s easier to do because I have this forum to talk about those specifics with people who understand, esp. those dealing with the seronegativity issue. Looking forward to the next article…

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