How long did it take you to get a diagnosis?

  • By Sneed

    To know that one would have to know when it began and since RA may have been preceded by some other autoimmune condition which then overlapped with something new that may have been RA, or not, I suspect this question can not be answered for many of us. I know I was initially diagnosed with PMR in 1999 and then palindromic rheumatism and then RA but it all overlaps and is best described, in my opinion, as autoimmune disease. Is X symptom caused by one or another or by several? Unknown and probably unknowable.

    Reply Created with Sketch. reply
  • By Ramomof2

    It took me about 4 months. Oddly at my PCP’s office my RF was low, SED rate high (66) and at the time I had slightly elevated uric acid. So even being a 28yr old female. My PCP diagnosed it as gout! My pain was/is excruciating. So after two ER visits, I finally got in touch with a rheumatologist. When they did blood work my RF was then “40”! Im still confused as how that number spiked.

    Reply Created with Sketch. reply
    • By starscream

      I had another severe condition that sent me to a rheumatologist who then also dxed RA. I had not gone to a dr for exhaustion (just blamed on hard work), or swellings (just blamed that on injury or allergy). I never though the flushed skin and cysts and pain in joints were in any way related to each other. Especially as my joint pain correlates with joint use I just figured I had strained the joint in question. Even after the diagnosis I did not realize exhaustion was related until reading on my own. My condition is considered to have been diagnosed early so I was lucky to have been sent to an Rheumatoligist for the other condition.

      Reply Created with Sketch. reply
  • By Shannon

    My PCP just gave diagnosis. I go to Rhuemotologist in a week. I am sure there will be more test but all the information is overwhelming. Ready for some relief. Thanks

    Reply Created with Sketch. reply
    • By Lauren Tucker Keymaster

      We are here for you to answer any questions. While we cannot provide medical or treatment advice via the internet (for your safety) We are always here to direct you and support you in anyway. Keep us posted!
      Best, Lauren ( Team)

      Reply Created with Sketch. reply
  • By ccrowder123

    My wrist was hurting off an on for a few months and I finally decided a doctor visit was in order. I went to my primary for a sore wrist, he gave me a brace and I wore it for 6 weeks, returned and I was referredd for carpel tunnel evaluation. I also did X-rays. At this point I just gave up and convinced myself it would eventually go away. 6 months later I returned because I could not hold a pan, start my car, open canned goods and more everyday things. It was at this point he ran some additional bloodwork tests and my RA Factor was 57. I was referred to a RA and saw him within 2 weeks. I was diagnosed in March of this year and unfortunately still am dealing with wrist pain. I am sure I have had RA for a few years because my hands and feet were always hurting and I was constantly taking alleve.

    Reply Created with Sketch. reply
    • By Monica Y. Sengupta Moderator

      ccrowder123, I am sorry you’re still dealing with wrist pain.

      I also found out about my RA through a wrist injury. We found out it was an inflammed tendon but I began to feel joint pain in my elbows and shoulders. But, I suspect I had symptoms long before because I had intense fatigue and knee and ankle pain.

      I hope you and your rheumatologist find a treatment that works best for you! Please reach out if you have any questions or just for support! Good luck!
      ~Monica ( Team Member)

      Reply Created with Sketch. reply
  • By sandymm

    I started have wrist pain in July of this year and was finally diagnosed with RA on October 9th. My rheumatologist is trying to find the right “cocktail” to get the inflammation out and yup, I have to admit it, some days the pain just discourages me and I wonder if I will ever be able to use my hands again doing the things I love and being able to schedule any plans at all.

    Reply Created with Sketch. reply
  • By Larry Sawyer

    For your wrists, find a compounding pharmacy, mine is Prescription Alternatives.

    get your doctor to write script for (Diclofenac 10% Lipoderm), apply 4 times a day. I use it when things get really bad. wash dishes by hand in the hottest water you can stand. really do a good job. makes your hands and. wrists work.and fell better.
    do everything you can with your hands, work through the pain.
    be well in mind and body, never give up

    Reply Created with Sketch. reply
    • By Monica Y. Sengupta Moderator

      Thanks so much for sharing what has helped you, Larry. Of course, different treatments work differently for everyone and we are glad to hear you are feeling better. We encourage our community to talk with their doctor before trying any new treatments. Additionally, I had to remove the contact information as it violates our community rules. (See them here:

      Glad to have you here!
      Best, Monica ( Moderator)

      Reply Created with Sketch. reply
    • By Monica Y. Sengupta Moderator

      Hi sandymm,

      I am so sorry to hear you feel so uncomfortable. You are not alone, many of our community members also feel wrist and hand pain. (Actually, for me, it was the same way. I was diagnosed with RA from wrist injury!) Since you mentioned it specifically, I thought you might find this article useful. It contains some links and advice in regards to hand pain.

      It is very important that you talk with your doctor about any concerns or treatments you are interested in.

      Please keep us updated on how you feel!

      All the best, Monica ( Moderator)

      Reply Created with Sketch. reply
    • By sandymm

      Thank you for the link. I found it very informative. My RA affects the shoulders, biceps, wrists and hands the most. No, I do not try anything until I talk it over with my rheumatologist . This is all new to me and I also deal with a heart problem. I find it nice that we can all discuss our problems on this forum and appreciate that the moderators watch closely.

      I know that with such pain, there are some of us who will try almost anything for relief. It is good to know that you monitor. I use the cold or hot, depending on the day and stay on the meds. We still have not found the solution that my rheumatologist is seeking, but is a wonderful, caring doctor and that helps.

      Reply Created with Sketch. reply
    • By Monica Y. Sengupta Moderator

      Thank you for your kind words!!

      Yes, I agree…These forums are great and for me personally, I sometimes feel very isolated so it’s nice to chat with people going through the same things as I do.

      I really hope you find the right med “cocktail” (I love that term!) for the best relief soon! For me and my rheumatologist, it was a lot of trial and error and I was very resistant at first but as of now, I feel like I’m on a pretty good regime!

      All the best and thank you!!
      ~Monica ( Team Member)

      Reply Created with Sketch. reply
  • By MaxDrave

    My wife and I were living in France and were in business there….

    On the Sunday we were cutting back some old growth from a hedge and I caught my back on a very tall stump covered with a fungus… I gained a small scratch and a very large rash on my back which was unusual for me.

    Next morning we woke up, I put my feet on the floor and thought “That’s odd, I seem to have gold balls under my feet?”…. Later that morning we went to see our Dr…. Who it turned out had spent much time with an RA specialist… As soon as I presented my story he said “I think you have RA”.

    Later that day I had the blood test and within 4 days was on medication…. That was a a decade ago, my RA is now everywhere and moves about daily… I use a wheelchair 98% of the time and I am typing this @ 06.35 because I have been up with some sort of neuralgia in my temporomandibular joint on the left side since 04.15 … and they say RA isn’t fun.

    Reply Created with Sketch. reply
  • By mlw

    Years. In hindsight, both joint and cardiac symptoms go back 25 years. But always mild until finally last year I had a very swollen and locked up pinky finger. Clinic tested and found CCP3 was 157. Then I had a dramatically painful wrist flare, after several months on plaquinil and prednisone so started leflunomide. Not terribly fond of leflunomide but no significant flares since starting. I’m TERRIFIED of thinking about the kind of pain so many people suffer and that I might have that in my future! Y’all are troopers!

    Reply Created with Sketch. reply
  • By MaxDrave

    mlw…… This is not medical advice.

    I have had a stent fitted after a heart attack in 2010, a year after my diagnosis for RA

    Myself I used to take Leflunomide (Arava) for about 5 years (from 2011/12) and it was for me, quite brilliant; very little pain, few flares …. Except I have hypertension (high blood pressure) and Arava has a contraindication for hypertension … It took 5 years for someone to work out that is why my blood pressure was through the roof.

    They have now taken me off Arava and my hypertension is now under control… but my RA isn’t.

    Thought that might be helpful for you to know.

    Reply Created with Sketch. reply
  • By Catholicmama

    12 years. Because the first doctor to ever even listen to me left his practice before I could get any test results ( and my health insurance hit the fan for a time around then too). It took 12 years and my ending up in a wheelchair to get another doctor to listen enough to run the tests again. I’ve finally been referred to a rheumatologist but am awaiting their call back still.

    Reply Created with Sketch. reply
  • By MaryB

    I got a diagnosis easily but haven’t found a helping med. yet. I have 5 doctors with different specialities, and am very lucky. They all are compassionate, caring and really listen. But the meds just aren’t working. Have to be careful because I have had Crohn’s DIsease since 1974, and almost seven years ago had a series of mini-strokes and a major one on the brain stem so there are meds for that. Then we discovered 3 heart problems plus a minor heart attack more meds for those. We have to take all of this into consideration with new meds. It has been so nice to have this site to “unload” to, as most people just don’t understand.
    Guess my wish would be for us all to have a miracle and this would disappear. Until then, blessings to all.

    Reply Created with Sketch. reply
  • By mewhoshops

    I’m just in the process of being diagnosed. I was diagnosed by a rheumatologist as having osteoarthritis approximately 12 years ago but for the past 3-4 years the pain has been unbearable at times that would last for weeks to months. I’ve been in horrible pain for the past 4 months but only recently purchased health insurance because I felt something was terribly wrong. Finally made an appointment with a nurse practitioner and she immediately ran blood work. I can’t remember which tests she ran other than lymes which came back negative and then the inflammation test which came back elevated. She is now referring me to a rheumatologist because she feels that I actually have RA. All of these years I thought this pain was osteoarthritis and have been on nothing. In the past when I had insurance I would tell the doctor I have osteoarthritis and they just recommended ibuprofen, Aleve or Tylenol and they didn’t even touch my pain. I’m obviously frustrated because of this had been diagnosed correctly I may have been able to slow the process down a bit by the sounds of it if caught early on. I’m 56 and this pain started at least 15 years ago. It is in both hands, with seized pinky fingers, new pain in thumb/wrist area, feet, hips, knees, neck.
    I do have a question though…I’ve noticed that prior to one of my finger joint nodules inflaming and growing larger I will develop tiny itchy blisters. They don’t ooze but eventually crust over and peel. I’m just wondering if this is a symptom of RA? Has anyone else experienced this?
    I apologize for not knowing the lingo, tests etc…yet. I’m sure I’ll get there and I really appreciate all that I’m learning on this forum.

    Reply Created with Sketch. reply
  • By elisa_comer

    “Diagnosis” seems to often be an ongoing phenomenon in AI conditions. My initial diagnosis of RA took 4 years, almost 5. RA came in 2009 and we think it’s primary, then along the way came ulcerative colitis, dysautonomia, psoriatic arthritis, and in 2017, Sjogren’s. Oh – I got a pacemaker in 2010, too. So – it’s always something. These things do, indeed, often come in clusters. So, 12 years in, and we’re good to go. Sorta.

    Reply Created with Sketch. reply
  • By baegidi

    I am new to this site, but just wanted to post to see if anyone had a similar experience. I am having a very hard time managing my pain and other symptoms, but have yet to receive an official diagnosis and treatment plan, so I’m feeling very alone and despondent about my future .

    I am a female, currently 32 years old, and started having severe pain in both feet when I was 28 years old. At the time, I was working for a podiatrist who was unable to find any diagnostic explanation for my pain. We tried fracture boots, casts, shoe changes, custom orthotics, and Cortisone injections. The orthotics and injections helped for a short period of time, but the pain always returned, much to the podiatrists surprise and confusion.

    About a year after the foot pain started, my right wrist and hand became excruciatingly painful. I was a medical scribe at the time so this was very debilitating for me, since my entire job was typing for 10 to 12 hours a day. The doctor I worked for sent me to a hand specialist, who diagnosed tendinitis or trigger thumb and gave cortisone injections and a wrist brace. The Cortisone injection was great and helped for about a year, but the pain came back and has only worsened since then.

    Six months after the trigger thumb diagnosis, I had a sudden onset of severe and debilitating back pain. I saw my primary care doctor who gave pain medication and muscle relaxers and this provided enough relief that I was able to go back to work the next day. I had a pretty significant pain for the next two weeks, and cried a couple of days during my lunch break at work, but it was at least better than the initial onset. The pain persisted for the next six months but I had been without insurance during that time. When I finally got insurance, my primary care doctor ordered an MRI which showed a herniated disc at L4 – L5 and bilateral facet arthropathy in all my lumbar and sacral vertebrae. At the time I was 30 years old, had been active my entire life, was not overweight and had never been overweight. I was a competitive dancer and gymnast for about 12 years, and the primary care doctor thought perhaps that could have explained the arthritis in someone so young and physically fit.

    He sent me to a pain doctor, who tried course of steroids for a week. This did not provide much relief, so we moved onto two epidurals. The epidurals provided about four days of relief, so he recommended a radiofrequency ablation of my lumbar nerves. I did this on my 31st birthday and was able to walk a 5K about six weeks later. However, the 5K led to a significant flare in pain about a week after the race, and I seem to have remained in this “flare” since then (December 2016).

    By then, my wrist and hand pain was so severe that I have a hard time performing my route work as a medical scribe. I had to see a different orthopedic hand surgeon at this time, because my insurance I dropped the network that my previous hand surgeon belonged to. This new orthopedic surgeon took x-rays, which I never saw and to this day have not been able to obtain. The minute he walked in the door he asked me if I had seen a rheumatologist. I had long been concerned about a rheumatologic disease myself because my grandmother had RA, but this was the first physician who recommended I be evaluated for it. My primary care doctor had ordered labs about a year prior, and my sed rate was 36. That had been the only elevated inflammation marker, but he did not run an anti-CCP or an RF level.

    I have since seen two rheumatologists. The first one was horribly rude and dismissive, and I was only able to see his nurse practitioner after the first visit. His nurse practitioner was incredibly rude and told me that she did not think the disease had progressed enough to be treated. I cried most mornings when I woke up, had not been able to drive for two months at the time of the appointment, cried multiple times throughout my workday, and felt horribly disabled and unable to live a normal life, so hearing that it had not “progressed” enough for her to consider treatment was very offensive to me. She then told me I had poor sleep hygiene, though she had never asked me about my habits. I had already spent years perfecting my sleep hygiene habits so I did not appreciate that she never even asked me, but I was still only sleeping 3 to 4 hours a night. At the time, and to this day I wake up every two hours in extreme pain, and nothing I have done has improved this over the last two years.

    I discussed my concerns with my primary care physician who told me he did not want me returning to that office, and I completely agree with that decision. He referred me to another rheumatologist in his network. My primary care physician has been a wonderful doctor in the 8 years he has been treating me, and I always trust his opinion’s, so I was happy to see a provider that he recommended and was familiar with, especially since they were in the same network and could communicate with each other when necessary. This rheumatologist was vastly different from the first, and was incredibly kind and attentive and my first visit. He said several times throughout the appointment that he was so sorry for what I was having to endure, something I never heard from the first doctor and his nurse practitioner. He has been very kind and attentive, but he somewhat old school and has not wanted to start any treatments since I successfully weaned of the steroids. My primary care doctor had started me on prednisone after my horrible visit with the first rheumatologist, in an attempt to allow me to keep working. While the prednisone did help me function a little better, and helped reduce the number of times I had to go home from work early from the pain, I had a horrible time discontinuing the medicine and had horrible side effects for about six weeks while lowering my dosage. I saw the rheumatologist while I I was slowly tapering off the prednisone and he told me the withdrawal symptoms were clouding his evaluation and he did not want to officially call it anything while I was still weaning off the medication. Both the first rheumatologist and the new rheumatologist were suspicious of ankylosing spondylitis. The first rheumatologist also said I had fibromyalgia, but my primary care doctor, my pain management doctor, and the new rheumatologist all completely disagree with this assessment. However, the new rheumatologist believes I may have RA in addition to the ankylosing spondylitis, but he has still not suggested a treatment plan. At my last visit I had been off the prednisones for two weeks and he told me to call him in two months and let him know how I was doing. I was so frustrated with this visit because I was hoping we would be coming up with a treatment plan at that time, and I am getting progressively worse the longer I have been off the prednisone. I can now barely walk because of the pain and I had to leave my job because I just could not function because of the pain.

    All of my painful areas are as follows: both shoulders, right greater than left; both wrists and hands, right greater than left; my back from the lower thoracic all the way down to the end of my sacral vertebrae; both knees, right greater than left; both ankles, right much greater than left; my sternum and rib cage; and every joint in both feet, right greater than left.

    In addition to the pain, I do experience terrible fatigue, difficulty sleeping, brain fog, butterfly shaped rash on my face neck and chest, a rough and bumpy rash on both arms and my lower back, and persistent nausea and vomiting. I have swelling in both hands, mostly my knuckles, swelling in both knees, ankles and feet, and I have firm, bony bumps on several joints in my hands and fingers. I’ve mentioned these bumps to both rheumatologists and neither of them have even examined my hands. The first one told me I needed x-rays even though I had an MRI of the right wrist and hand. I have had three MRIs, two CT scans of my chest abdomen and pelvis, a stress echo which was normal, and I’ve been to physical therapy for 10 months with no improvement. The only thing I got out of PT was I learned how to get in and out of bed and in and out of my car, which was very helpful I must admit.

    I have tried braces, use of a walker and crutches, compression gloves, arnica, CBD oil, lidocaine patches, lidocaine gel, anti-inflammatories, steroids, pain medication, meditation, cognitive therapy, Lyrica and gabapentin, and stretching but almost nothing provides significant, long-lasting relief.

    I’m sorry to have such a long post, and I’m obviously not seeking medical advice, but I guess I’m looking to see if anyone had a similar experience and had a difficult time getting a diagnosis even after 4 to 5 years of severe pain. I guess I’m looking for hope someone will finally listen and do something about it. I feel like a young person trapped in an old person‘s body and it’s been very hard coping with my loss of independence and mobility, so I guess I’m just looking for some sort of encouragement that it eventually gets better? Thanks for taking the time to read my ridiculously long post!


    Reply Created with Sketch. reply
    • By ktinflorida

      Yes, I had that much trouble getting diagnosed and I also had to leave my job. I am on my 3rd Rheumatologist, But he is good and I have been with him for 10 years. There is hope.

      First, with the butterfly rash, did they test for lupus? Did they run the full Rheumatology panel for your bloodwork? Was your ANA positive? If so, what pattern?

      Second, ask your Rheumatologist if they make sero-negative diagnosis. It means the bloodwork shows nothing, but symptoms show disease. If they don’t, I would suggest finding yet another doctor. It took me years for RA to show in my blood. In the meantime, it damaged my internal organs. Many patients never have positive bloodwork.

      I travel 6 hours to a University hospital because they do research and teach, so they are more open to newer trends in medicine. Is it possible to do that? Even Mayo or Cleveland Clinic would be a valuable diagnostic tool, but you still can’t make the local doctor follow their treatment plan.

      I hope you are able to find help. You don’t have to live in that kind of pain. Go advocate for yourself so you don’t get stuck in this pit. Take someone with you if the pain and fatigue make that difficult.

      It does get better, but getting there is the trick.

      Reply Created with Sketch. reply
    • By baegidi

      Thank you so much for responding, and thank you for telling me there is hope. My ANA was negative, but it was tested 18 months ago and no one has repeated my rheumatology labs since then. I had a rheumatologist that I met through work tell me that I should have rheumatology labs repeated every six months, given my family history of rheumatologic diseases (my father has Crohn’s, grandmother had our RA, and an uncle had ankylosing spondylitis) but the physicians that are treating me have not followed that recommendation. I have an appointment with my primary care doctor today, and he’s aware of the struggles I have had getting treatment, so he’s usually open to suggestions like repeating labs or starting new anti-inflammatories to help manage my pain enough to function at a reduced capacity. I think I will ask him to do a full panel and repeat the ANA test, just to be sure.

      I was very concerned that the first rheumatologist and his nurse practitioner completely ignored me when I said I had a butterfly shaped rash on my face, since I was already aware that this could sometimes be an indicator of lupus, but no one wanted to look at my face when I was there for the appointments and no one had any interest in looking at the pictures I had taken of the rash in the past. I saw a dentist last week who was extremely concerned because I had the rash when I was in her office, but she’s honestly the first medical provider who has seen it in person. I can’t figure out what the pattern is or what causes the rash to show, it just seems to appear randomly.

      I actually live in Scottsdale, which is quite close to two Mayo locations, but no one has recommended I see them before, yours is the first recommendation for that. And I’m actually applying for a internship position in Cleveland, so if I get the position I will certainly see someone in their clinic. I think you’re probably right that they are knowledgeable and worth the effort, and I think I will look into scheduling with them, I just know it is very hard to get in to see them if you are not already in established patient or an employee of their network!

      As far as treating sero negative, the nurse practitioner of the first rheumatologist said that since my labs were normal she could not diagnose or treat me, so I took that to mean that their office did not believe in seronegative rheumatology diseases. I’ve not discussed this with my current rheumatologist – honestly, it never actually occurred to me to ask until you suggested it! – but I will make sure that I ask that at my next appointment with him. My primary care physician has repeatedly told me that he has seen many cases of seronegative RA, and he has told me he’s very concerned about the damage this disease is wreaking on my body, even if my labs are negative, so I’m very grateful to have him as my primary provider.

      Though I am sorry to hear that you experienced a similar struggle, it does make me hopeful to know there are other people out there with seronegative disease that have been treated. I have started doubting myself after being blown off by so many physicians, so I really needed to hear that, thank you!

      Reply Created with Sketch. reply
    • By KellyT

      I too am having a difficult time getting a diagnoses. I have had two spinal fusion L4-5 ( 2013 and 2017 ). The first fusion did not take so my surgeon did bigger screws the second time. I had been reffered to Rheumatologist back in 2015 because of severe right hip/groin pain. He did several labs and the labs showed a positive ANA nothing else. He said at that time he did see i had arthritis in my left pinky and thought my hip pain was bursitis. With that information he said he couldn’t say for sure I had RA but would like to inject my hip for the bursitis. Which hurt and was not real helpful. Fast foward to 2018 i still have sever hip pain i went to a orthopefic doctor who said i have two labral tears and a cam deformity after getting a MRI. So he did injection and said i could have one every three months until i decide to get fixed. Meanwhile i still am seeing my primary care doctor for back pain. I have developed other symptoms now which include, extreme fatigue , horrible back pain and stiffness in morning, fingers / toes always cold, scattered brained, strange burning sensations in my legs and feet, my optometrist said i have dry eye, my fingers hurt, my left pinky finger does not straighten all the way, my toes look like crooked sausages,. Oh i almost forgot i got these weird white spots on my face ( which looks like vitiligo) So after giving my doctor this information she says well if you think you need go back to Rheumatologist you can but i don’t think its anything. Needless to say i have a journal and will be taking that with me to the rheumatologist in October. With any luck he will put the pieces of the puzzle together. I reallt don’t want a autoimmune disorder but i sure would like some answers and not feel like i am crazy.

      Reply Created with Sketch. reply
  • By Monica Y. Sengupta Moderator

    Hi baegidi,

    Thank you so much for reaching out to us here! As you can see, our community is welcoming, warm and friendly. I am so sorry you are dealing with finding a proper diagnosis and rheumatologist you like.

    The Arthritis Foundation is a great place to get information and support. They have a Resource Finder that helps you find rheumatologists in your area.

    This article is helpful in starting a conversation with your rheumatologist:

    Please feel free to post here again. We are here for you and would love to hear updates.

    All the best, Monica ( Team)

    Reply Created with Sketch. reply
  • By carmen88

    I got diagnosed with Fibromyalgia/CFS back in Dec ’04-Jan’05. Approximately 5 yrs after a pretty bad MVA. Then, & I mean it seemed all of a sudden, my feet, lower back, hands & wrists & fingers..extra fatigue, extra very bad mood days, added depression. Idk about anyone else but this disease really sucks! And to have BOTH!? I got my diagnosis of RA in June 2017. I’m scheduled to see a Rheumatologist in July of this year, finally. So far, NOT MUCH REALLY WORKS!! this is so painful. Anybody have any advice just DEALING with this crap??

    Reply Created with Sketch. reply
  • By Patri

    I was diagnosed wit RA two weeks ago. I started having pain in my hands and being very stiff in the morning, my right knee would swell and hurt badly. So I decided to go see a rheumatologist. The doctor sent a bunch of exams, xrays, ultrasounds, lab work. The ultrasound showed I already had fluid in my rigth knee and my hand joints were swollen. The RF was not high, 13.9 only but she did another test called Waaler Rose and that came positive. So because my mother had terrible RA, the doctor diagnosed me with RA. I get up in the morning and I am very stiff, bottom of my feet hurt, hand hurt terribly. But do I really have it since te RF was low? I just want to make sure I do. I am very open for feedback.

    Thank you!


    Reply Created with Sketch. reply
    • By Monica Y. Sengupta Moderator

      Hi Patri! Thank you for reaching out! For your safety, we cannot give medical advice online. Rheumatoid Arthritis can present many different ways and show up in blood work different. Everyone is different in this regard. There is some conversation on whether RA is genetic

      It’s very important you continue to speak to your physician about your symptoms as that will help he/she with the proper diagnosis.

      Please reach out if you have any more questions — Monica ( Team)

      Reply Created with Sketch. reply
    • By CaseyH Moderator

      Oh wow, kayshay24. I’m sorry to hear about your recent diagnosis, however, I’m glad to hear that you’ve finally found an answer as to what’s been going on for the past 12 years. We’re here for you during this journey. Feel free to reach out anytime if you have any questions or concerns. Wishing you the best! -Casey, Team

      Reply Created with Sketch. reply
  • By Kimberly

    I continued to have swelling after 4 foot surgeries within less than 2 yrs ( my bones refused to fuse back together). Finally I went to Primary doc and told him to run RA test. Called me the next night saying my numbers were literally off the chart. Severe RA. Already had made me an appointment for next day. As I look back, I know without a doubt that I’ve had it a minimum of 10 yrs.

    Reply Created with Sketch. reply
  • By Anonymous

    14 years for me. I was being treated for breast cancer, developed peripheral neuropathy of my feet. Then another pain started.
    Finally got a doc to listen when my hands and fingers swelled. Official diagnosis March 2018.

    Reply Created with Sketch. reply
  • By GinaB

    RA I believe can be brought on by stress. My husband broke his wrist at work and my mother in law was in the process of being moved to assisted living, I was trying to take care of everything and one morning I could not get out of bed. Had to be put in my mom’s in law wheelchair. Emergency room, PCP and finally the best RA Dr. in NH. I was diagnosed with Fibromyalgia and he ran some test and put me on Gabapentin for the Fibro. My RA factor came back at 85 and my inflammation markers SED and CRS very high and I began treatment MTX and Plaquenil. It took about a month but I was up and walking on my own and trying to get back to some form of normal. You have to know and learn your limits, I can go out with my husband or self for one hour and then I start feeling my energy being drained from me. I am very lucky I work from home so it has not affected my job. I have a supportive husband, he will never understand the pain I have and it tears him apart to see me cry so I hide and cry (which by the way I never was a crier) but am now. You some how go on and it is a learning experience everyday. My RA factor has moved to 50 now, so getting there. Dr. had me try Humira, sure might be great for some people, I got shingles (even after the two shingles shot) they were not as bad as they could be. I am at 30% pain in me body mostly my shoulders right now, so RA is obviously making its way around to all my joints. I am happy with the MTX and Plaquenil, and Gabapentin. I know Dr. wants me to take a Biologic again, but going to wait a bit on that after the last experience. It is hard to accept that you have RA and it is not going away that is what I am working on now. That is my story, hope everyone has a great RA Dr. you really need too. Have one in the Exeter NH area if anyone is looking. Good luck to all out there, long roads ahead.

    Reply Created with Sketch. reply
  • By warriorwoman

    I have been in weird, unremitting pain for about four months, and seeing doctors specifically about RA possibility for over a month and am still not diagnosed, though the blood tests have been run. I saw a primary care physician who took blood and after seeing an RA marker referred me to a too busy to listen rheumatologist with a packed waiting room and rude and uncaring staff. I am now waiting two weeks to be scheduled with another rheumatologist and am in constant pain, only mitigated by the 500 mg NSAID the primary care doctor prescribed for me when I showed up again in her office in tears. The only thing that has minimized my pain or despair or anxiety is the NSAID and one trip to an acupuncturist — who was wonderful. And not covered by insurance.

    This is NOT ACCEPTABLE. We as a country and culture can do better than this for people like us.

    Reply Created with Sketch. reply
  • By sissinou

    I was lucky enough to find out within a month. After giving birth to my first baby I started to be in pain literally everywhere, my wrists, my elbows, my knees, my feet… I first thought it was because I was tired and that my body was adjusting. Until that night, two weeks after the labor I found myself totally paralyzed, the swollen, the pain was unbearable, my husband took me to ER and they made some blood work and ultrasounds and found that I had a seropositive RA, with all the markers for the inflammation positive and later found out that I had Lupus too.
    I am still struggling after 4 yours, no medication had worked yet and my mobility is limited and I am in pain constantly. It is really hard, I lost many jobs and I am barely functional. I do not loose hope though and I hope I will be able to have it under control!!!
    Sending my prayers and thoughts of love to all of you

    Reply Created with Sketch. reply
  • By gbapk007

    It took me around 4 months. Strangely at my PCP’s office, my RF was low, SED rate high (66) and at the time I had somewhat lifted uric corrosive. So notwithstanding being a 28yr old female. My PCP analyzed it as gout! My agony was/is gbapk unbearable. So after two ER visits, I at long last connected with a rheumatologist. When they blooded work my RF was then “40”! I’m still confounded as of how that number spiked.

    Reply Created with Sketch. reply
  • By Jules58

    Hi its jules, I have been in treatment for 6 years. It started with a trigger finger so I see a hand specialist. Their treatment was useless and painful. In 2017 I had a visit and was told once my rheumatogist got me treated correctly my hands would be better. My hands are most painful and sometimes useless. My primary of 10 years kept giving me prednisone without checking my levels for osteoporosis. When I said no more prednisone my dr. Patient relationship was done. I had lost 20 pounds, looked 10 years older my skin was so thin any minor bump or scratch became an ugly blood spot that lasted for weeks and now I
    had osteoporosis. My rhumatologist now gives me ProLia shots and I am very careful not to fall. I have been a ginnie pig and have been on almost every biologic. Most recent treatment was Retuxin 2, 5 hour infusions in September. Not sure if it’s working. Going to be evaluated by the university of Rochester RA clinic for diagnosis and treatment. I had bilateral knee replacements last December and a back fusion(L5S1) with cage and bone graph 2 weeks ago. I used FMLA for 4 years until I had to give up my career of 19 years. I am hoping I will get some answers at my upcoming appointment. Everything I’ve learned is early diagnosis and treatment will slow the progression of my RA but not for me. Still searching for answers to give me back some joy since pain is relentless.

    Reply Created with Sketch. reply
  • By Antrius

    I have had the symptoms everysince I was a kid, but I got diagnosed a out a year ago for RA, they thought it was lupus at first but after most test they concluded it was RA.

    Reply Created with Sketch. reply
  • By starscream

    Does RA have a start date? Or does it just increase up from having something less serious? Now that I know the symptoms of an RA flare, I can remember easier levels of these symptoms from earlier (nothing I would go to a dr for but pain in the knees or exhaustion that I would rest for).

    Reply Created with Sketch. reply