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So many doctors, so confused. Please help.

I usually avoid forums because I have found that strangers are mean on the internet, but I am so frustrated and at the end up my rope I just don’t know where else to turn.
I’ll try to make this as short as possible.
– 29 years old. Married. No children, no pregnancies ever.
– Joint pain started about a year and a half ago. Started in my hips and fingers, then kind of hopped about. Tingling hands, wrists, fingers, feet. Painful shoulders and elbows. Also developed Reynaud’s. Everything seems to get worse with stress.
I thought it was because of my 1.5 hour (each way) commute to work, but it didn’t go away after I stopped commuting so I went to my GP.
– GP did some blood tests, assures me no lupus, no leukemia, etc. Found positive ANA, sent me to rheumatologist, at which point I immediately found a new GP as well because he messed up my test results and clearly did not care about what was going on with me.
– First rheum diagnosed fibro on first visit, sent me to a physical therapist who did a very awkward session and then told me that fibro is not real and he could not help me because it’s all in my head. Meanwhile $400 bill from the rheum confirmed that they had lied about being in my network, so can’t go back there.
– New GP is awesome. Does more blood work, finds positive ANA. Tests for Celiac are negative and no allergies except to cow’s milk. Refers to another rheum.
– First visit, doctor takes history which includes cousin with juvenile RA and NO LUPUS ANYWHERE. Orders blood tests and x-rays. Tells me that I “definitely do not have fibro and may develop RA due to family history.”
– Next appointment, same clinic, different doctor. Bloodwork returns, still positive ANA, but no markers for anything else except some borderline anemia. X-rays are normal. everything else seems normal. Doctor tells me that I may be “developing lupus.” He actually says “someone your age with these symptoms I would not diagnose RA.” Prescribes prednisone.
Here is the thing:
– I have NO SYMPTOMS OF LUPUS besides joint pain. No rashes at all, ever. I have never had a rash in my life. No sensitivity to sun. No hair loss.
– My joint pain is mostly symmetrical with the exception of my left knee that lately seems to be much worse than my right, but both have some pain. I have Reynaud’s.
– Talking to my mom while upset after latest appointment, she tells me that both my dad (who is deceased from cancer last April) and his sister (my aunt) had/have RA. I had NO IDEA. I haven’t been keeping her apprised of my health issues over the past year because my dad was very sick with cancer and I didn’t want her to worry about me, too. Apparently that was a huge mistake. I knew my dad had diabetes, but this whole time I thought his arthritis was just osteo like my mom has. I just saw my aunt two weeks ago and she can barely walk, but I had no idea that she has RA, too.
Mom is trying to get me documentation on my dad’s RA diagnoses because I kind of gave the doctor a hard time about lupus (everyone has been telling me for the past year that I definitely do not have lupus and now he goes and picks on lupus because of my AGE?) and I am afraid that he will say that I am just trying to get out of a lupus dx. He hasn’t dx’ed anything yet, prescribed low-dose prednisone and wants me to call him in two weeks to see if it helps.
I know that auto-immune stuff is notoriously tricky and that heredity for RA and other conditions is controversial, but I can’t help feeling that this has to be relevant. I am just so at the end of my rope here and I know I really shouldn’t complain because some people take YEARS to get anyone to take them seriously and have much worse symptoms, but I just want to know what is wrong and I feel like the close family history has got to be relevant.
I don’t really know what I am looking for here. Just support and kind words, I guess. Or suggestions? I don’t know. Does anyone have experience with family histories or a doctor telling them that they are “developing” an autoimmune condition but don’t actually have it yet? I am so confused and I am really exhausted with the merry-g-round of doctors but I really disliked the guy I saw today and don’t particularly want to go back to him. I just feel overwhelmed and I don’t know what to do.

  1. Hi Clinn236. Wow. Where do I start? First, I'm sorry you had such a bad experience with other online sites. I used another online support group for RA and can also attest to the fact that there were a few people on there that were brutal. I have NEVER seen that happen here.

    Your story sounds similar to mine as far as 'is it lupus, is it RA?' I also had a Rheumatologist who didn't agree that Fibromyalgia was a real diagnosis because it couldn't be quantified by blood tests or neuro tests. That guy tried to have me transferred to the psych floor of the hospital (because it was all in my head) while I was having very real side effects from a lupus med. Long story. I fired him. The next Rheumy at a prestigious institution didn't think there was anything wrong with me, so he tried to take me off all my meds. Fired him too. If it doesn't feel right, if you aren't being heard, don't be afraid to keep looking for a good doctor. I drive 6 1/2 hours to get to my Rheumatologist- that I LOVE.

    I started out with a positive ANA. They called it 'undifferentiated connective tissue disease '. Then my blood tested positve for lupus for about 18 months. They called it lupus. Then, the lupus blood test went back negative. My new, good doctor explained that he thought what I really had was technically called 'mixed connective tissue disease '. He told me eventually some other blood test would be positive. It took years, but eventually RA tested positive. He said that may eventually go dormant and something else will pop. It is like playing autoimmune whack-a-mole.

    It comes with Reynaud's and Fibro. He treats all of it and NEVER tells me it is all in my head. What I learned from my massive failures with the first 2 Rheumatologists is to interview them while they are examining me. They think they are educating me, but they are really applying for a job.

    My first question is to inquire about Fibromyalgia. How is it diagnosed? How do you know if you have it? My first 2 Rheumatologists straight up told me they didn't believe it was a real medical diagnosis, but more of a psychological one. Should have been a major red flag, but I was about your age and very naive.

    My second question is to find out if they will make what is called a sero-negative diagnosis of an autoimmune disease. I asked something like, 'can you have lupus (RA) if your bloodwork is negative or does that definitively rule it out?' If they tell me it rules it out, it means I need to keep looking for a good Rheumatologist. I think I read somewhere that 20% of people with autoimmune diseases are sero-negative. Again, both previous Rheumatologists didn't make sero-negative diagnosis. This meant I was in pain, was told that I wasn't in pain and I really only needed a good therapist. Meanwhile, my RA was raging through my body.

    And if you get better on the prednisone, all that means is that you MIGHT HAVE RA. They give that for many autoimmune diseases. I hope that is not what they are using for proof.

    I don't know about heredity and RA, but my mom has it as well. They never did figure out what my great aunt had, but she may have had an old school doctor who wouldn't make a sero-negative diagnosis. All I can tell you is to google 'PubMed' and then search for articles on RA and heredity. These are research papers physicians publish, so they are highly technical and hard to read, but the more you read, the more you understand. Finding a Rheumatologist at a university hospital is going to be your best bet because they are the ones doing the research.

    If you don't like your doctor, trust your gut. It is a very important relationship and you need to be comfortable with them. It shouldn't be adversarial. You are your own best advocate.

    I hope I helped a little. I wish I could go with people who are having problems with doctors both for support and because there is strength in numbers. Hang in there and let me know how you are doing and what you decide to do.

    KT

    1. Hey clinn236,

      I'm sorry to hear about everything you've been dealing with. It sounds a lot like what I went through when I first started getting symptoms (especially the tingling and Reynaud's). My first doc also told me that I probably had fibro, but I knew that wasn't what I was experiencing (26 years in nursing). I will tell you that it can be a long road - it gets better in some ways and worse in others. It took a few years for me to figure out which lifestyle changes actually made a difference for me (staying active, but not too active, having a good sleep routine, taking the right meds, and building a support network).

      I'm curious about your symptoms, have you had a flare-up? They are pretty easy to spot once you know what you are looking for. How about redness/swelling around joints? Any fever? Flu-like symptoms?

      A helpful thing to do is to keep a journal with short entries every day. Take your temperature and write it down. While I was figuring out what was going on with my body I noticed that on my worst pain days my temperature was slightly elevated. Also, when your joints are hurting more than normal, have someone close to you feel them for warmth by comparing the way the skin feels to other places that aren't over a painful joint. Note that also. Doing all this really helps when you talk to your doctor since RA can be so cyclical and come in waves it can be hard for a doctor to really zero in on it. The ANA blood test is a good first step and elevated levels point towards a possible auto-immune condition.

      Anyways, just wanted to say that you can still live a great life! You've just got to find what works for you and put the time in to document everything at first. Best of luck!

      ,Dan

      1. Oh yeah, it also helps to not push an RA dx on your doctor. Not saying that is what you're doing, I just know that I probably came off a bit pushy with my first doc and it seemed to put him off and slow everything down (even though i KNEW what i was experiencing). In my experience a lot of doctors listen to you less if you come off as knowing what you have.Just carefully document your symptoms, be consistent, and let the doc work his/her way through the possibilities. Most doctors want to rule out everything else before they land on RA since it harder to treat and is chronic.

        1. Hi clinn236. Sorry to hear that you are having these diagnostic issues. RA (and other autoimmune conditions) are notoriously difficult to diagnose. This article from our editorial team takes a closer look at the diagnostic process: https://rheumatoidarthritis.net/diagnosis/.

          You mention learning that there is more family history of RA than you were originally aware. This may be relevant to your doctor. This article looks at family history and genetics: https://rheumatoidarthritis.net/causes/genetic-factors-and-family-history/.

          Please know that we/this community are here for you. Please let us know how we can support you or what questions we can help you with as the process unfolds. Wishing you the best. Richard (RheumatoidArthritis.net Team)

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