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New diagnosis. Seeking advice-PLEASE!

  • By Kari

    Hello. I just found this page and I’m newly diagnosed with RA. There’s been so much, so fast! I’ve only been on Methotrexate for 1 month. I don’t know anyone with RA and it’s hard for me to believe that all of the things I’m dealing with are caused by RA. I took the word “fatigue” lightly before now. I’m seeing no relief from the meds yet, but I’ve gotten to know my bed very, very well. I’m fortunate that I have a job that I can work from home, but my quality of life is sucking right now. I’m only able to be up and around for about 2 hours, max before I swell like a puffer fish and my fingers and toes turn blue and I have to lie down for 4 hours to get relief! Someone, please tell me it gets better. I am 44 years old with a 6 year old daughter that needs me. I’ll take ANY advice!!!

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  • By Lauren Tucker Keymaster

    Hi Kari,

    Thanks so much for posting in our forums and we are so glad that you found our community.
    We are sorry to hear about your diagnosis.
    You are not along with RA, we have many community members of all ages that are here to support you.

    First and foremost, fatigue is a common RA stymptom and while the community may provide you with some support, we have many articles on fatigue. Here are just a few:

    Strategies for dealing with RA fatigue

    Managing RA-Related Fatigue

    Second, we encourage you to talk to your Dr. about your current treatmenet plan (if you haven’t already done so) especially if you feel like it is not working for you. While sometimes it may take time for a treatment plan to work, speaking with a healthcare professional is your best bet.

    Lastly, it you want additional support you can visit our Facebook page.

    Our site has many articles and we have a great community of people living with RA that are here to support you. Whatever you need please don’t hestate to reach out.

    Gentle Hugs,
    Lauren (RheumatoidArthritis.net Team Member)

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  • By BrendaC45

    I too was recently diagnosed w/RA with all the tests showing positive plus low blood platelets. However, the dr. said I am considered at the early or “weak” stage so he said no further tests needed and to come back in 4 months to see him. I only take Tylenol. I read that early diagnosis is good & can prevent in some cases the advanced stages. My RF was only 85 and I’m sure there are ppl that runs in the hundreds. The anti CCP was positive, the RST was 40 so I understand why it is considered early. But if there is s way to slow it down, remission or whatever I would like to know about it. I have knots in 2 fingers, face flushed a lot, back pain most days & fatigue. Flare ups put me in bed because of the severe fatigue. It took several months for an Appt w/this Dr so I’m not looking forward to seeing another one. This shouldn’t matter but it is still in the back of my mind that the dr is in his mid to late 70’s. And I wonder if he’s kept up to date. Last question, do many ppl w/RA have a lot of sore throat? Seems mine is several days a week but I’m not sick as in head cold or sinus. Thanks much!!!

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  • By Eebtool

    Kari,
    Just a thought that might help a wee bit.
    Keep a log book of how RA has been going for you, good and bad days both. Record when you take pain killers, and when you use ice packs or a warm water soak. You can do it for each day, but every few days will be good. Take this log with you when you see your doctor.
    Remember that it is OK to ask for help on bad days.

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  • By ktinflorida

    Hi Kari. Sorry to hear things aren’t going so well. I see it has been a bit since this post, so I hope things have gotten better. It sounds like your doc is starting slow so that he doesn’t over-medicate you. I know it doesn’t feel like it, but that is a good thing. I started on a low dose methotrexate and gradually went up until I was maxed out. For me, my symptoms seem to correlate to my SED rate on my blood tests. The lower the score, the better I feel, but I know other measures are used for other people. I started on some IV biologics and ended up on Xeljanz, so my life is better than it was, but it took several years of trying different things before we found what worked for me and I still have flares. All I can really tell you is to hang in there if you feel your doctor is taking you seriously and making adjustments accordingly. It can take several months for a med to take full effect. BUT… if you believe your doctor is not listening to you and taking your issues seriously, get a second opinion. I went through a couple Rheumatologist before I found one that seemed to be concerned about my quality of life. I now look at it as a partnership.
    Good luck and I hope you find something that works for you. Children are only little for a short period of time. It can be heartbreaking knowing you aren’t there like you want to be.
    KT

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