Positive RF and sore stiff joints but my doctor thinks I'm crazy

I am new here but i just need some advice. My pcm has been extremely hesitant to do any tests or referrals outside of PT. He says all of my pains are sciatic nerve/piriformis muscle pain. Which makes absolutely no sense at all. PT recommended referral to rheumatologist but my pcm insisted I see ortho for sciatic nerve. Ortho took one look at me and ran a panel and I had a positive RF and referred me to rheumatologist, but my pcm is fighting me every step of the way. He says a positive RF means nothing since my hands aren't red and swollen. I am really hesitant to set up my appointment with the rheumatologist. my PCM has gotten into my head. I'm scared to go in and to get chastised for wasting the rheumatologists time like my pcm does to me.

I can't remember the last time I wasn't in pain. It is symmetrical and it seems to linger slightly in all my joints except my elbows but there's always one joint that hurts significantly more than the others but it's manageable right now. Maybe I should wait until it gets really bad again so the rheumatologist will be more likely to believe me.

15 Replies

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  • Hi and welcome to the site, can I just ask what is RF, ? Your gp can't stop you seeing a rheumatology expert just demand he refers you.

    best of luck

    philip

  • It's a rheumatoid factor

  • Ok thank you, it's just that I keep forgetting lol.

  • Don't know what a PCM is (are you in the US?) but I will say this...

    Rheumatoid Disease very frequently does NOT present like the pictures of red swollen hands in the information leaflets - I know to my cost. It was years before I had any swelling anywhere and my body just doesn't seem to do redness.

    A rheumatologist should at least be able to understand why you are concerned - even if he doesn't think you have inflammatory arthritis. I'd diarise all symptoms & what makes things worse/better, take pictures of anything that can be photographed & go and see one. You'll worry endlessly if you don't. If this is something inflammatory, the sooner you are diagnosed, the better. If it isn't, you may still need treatment. A rheumatologist is surely the best person to advise.

    All the best.

  • Sorry I am in the U.S. my husband is military pcm is a primary care manager (gp).

  • Ah. OK.

    We have issues in the UK too with GPs not being very well informed about rheumatoid disease. Positive Rheumatoid Factor may be something or nothing but it sounds like you really need some relief from the pain & the uncertainty.

  • Another option would be to ask your doc (don't quite understand difference between PCs/PT) to do the anti-CCP blood test. This is a bit more specific than the RF test and if you come up positive then there's really no excuse not to refer you to a rheumy ASAP. Waiting till it gets worse isn't a good idea as the sooner you get treated the more likely it is to take effect and the more likely it is that there will be no long term damage.

  • I would go see the the rheumatoidologist & put your mind at rest either way. I have early stages of RA / inflammatory arthritis & what you are describing with joints sounds like me as I was & still am. They are still not massively red & swollen. I think maybe when joints get red & swollen you are no longer in the early stages. And it is one of those conditions when the sooner you get diagnosis the better the long term future. Don't wait for things to get worse. You will not be wasting anyone's time. GPs / pcms don't always know - they don't have the experience. Mine said it wasn't 5 times - it was only the out of hours GP I originally saw who thought it might be & he was right. You have 2 other professionals saying it might be. The rheumatoidologist is the only one with the training & experience to know. If it was me, I would make that appointment. Good luck, RAinK

  • Hi there, I am in the UK and it took me 18 months of repeated trips to the doctor, before I got a diagnosis. When I saw a third rheumatologist (after seeing one who did some tests which my gp told me wasn't RA and a second scanned my hands which was inconclusive) he asked why I wasn't on meds already! I don't have classic symptoms but my anti-CCP was sky high, and am now on meds and feeling a lot better. Keep on at your doctor until you get some more tests - I don't think the anti-ccp is particularly expensive to do. Good luck!

  • Wish I knew who pcm was. See the rheumatologist, they are the experts.

  • Hi Ah, I'm in the U.S. also. I would not wait. You have the referral, it is much better to see the rheumatologist earlier than later. This way, they can confirm your diagnosis, or point you in another direction. At the very least you will get some help and relief, and if you are diagnosed, the earlier they catch it the more likely they are to stop or slow down damage to your joints as was mentioned by someone else. Hang in there and do not let anyone make you feel like you are wasting their time, you deserve to know what is going on with your body and to have relief from pain. Be blessed.

  • Hi, I too never had red or swollen fingers despite pain in knees, shoulders, feet etc but luckily my Doctor did and Anti-ccp test which was positive and high so I was then referred quite quickly. It has been a year since I was diagnosed then a couple of weeks ago my fingers become very swollen during a flare. It is very unpredictable. Good luck xxx

  • Hi there,

    In the early days I experienced morning stiffness (what lasted several hours) and pain in my wrists. As I was very young that time (about 16-17) no one suspected that actually I had RA as I play the piano and practiced quite a lot that time. I have seen 2-3 specialists with them and they thought I had carpal tunnel syndrome, prescribed painkillers and referred to physiotherapy. But sometimes different specialists made different diagnosis... eventually I gave up and accepted the pain.

    Then 8 years later my wrists and knuckles got red and swollen and now my legs are affected as well :( I was diagnosed 5 months ago with seronegative RA... As the others said, keep a diary, take pictures and don't think you waste anyone's time. You are in pain.

    All the best,

    Aggie xxx

  • Hello and welcome to the site

    Positive RF on its own doesn't mean you have RA, but it can be an indication and you are getting joint pains even if there isn't visible swelling in the hands. Hands aren't always red and swollen in RA, as the swelling can be in the joints without always being visible, and although hands and feet are the most commonly effected areas, it doesn't always start there.

    I don't see any problem with you seeing a rheumatologist, even if your PCM doesn't agree, as the ortho person you saw did the referral, so it was someone who is medically qualified and shouldn't look like you are wasting their time. I am also curious to know what the PCM thinks is causing your symptoms and how they can know if they have been reluctant even to do tests.

    This forum is moderated by NRAS, a UK-based charity, so our knowledge will be based on UK systems and tests etc may vary in the US, but over here, as well as an RF test patients are normally tested for raised inflammatory markers (ESR and CRP). It may be worth contacting a US-based organisation to clarify which tests should be done and when, but the bottom line is that you need to know what is causing this pain and get it treated as soon as possible.

    I really hope you get a diagnosis and treatment soon.

    Kind regards

    Victoria

    (NRAS Helpline)

  • Thank you all for your replies. I will make follow up appointment with rheumatologist . I do have swelling in my fingers that started a couple of months back. I don't really notice until I can't get my rings on or off. I have stiffness in my fingers that lasts throughout the day and stiffness and pain in a lot of other joints that seems to ease as the day progresses. I didn't have any high inflammatory markers when I had my blood work since I haven't been having any exceptional swelling that doesnt surprise me.

    My original doctor was unable to diagnose me. He at first thought it was my sciatic nerve since my legs were so severely affected for about 2 months. He referred me to physical therapy for a running injury I got in August/September of last year that I never healed from. However my stiffness and joint pain spread from my legs so much that my physical therapy referred me to rheumatology also.

    My doctor doesn't think any one is right since there isn't any red swollen joints. He wouldn't listen to my symptoms or my complaints. He just gave me Motrin and sent me home. I have been tested 2 times prior for the rheumatoid factor for symptoms and it has always come back negative until now. I hope that there's an explanation for everything outside of ra and that this new doctor can pinpoint it and give me what I need.

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