New to this whole RA thing! Any advice?

Well I suppose this is an introduction post, as well as a vent post!

This is all very new to me and I'm still not sure I'm ok with it yet! It started around Christmas, waking up every morning with painful achey fingers. Everyday taking longer and longer to go away. This then moved to other joints. One morning at 4am (thanks to my middle son waking me up) I googled achey fingers and it said I should see the doctor as it could be RA.

Saw the doctor who was very honest in saying he has no idea about ra but that it sounds like it could be. Sent me for blood tests. These came back inconclusive so referred me to rheumatologist as my symptoms had now spread to include hands, wrists, ankles, elbows, knees, fatigue beyond description, and,what can only be described as flu without the flu.

That was on Monday, he said I sounded like a broken record to all his other patients when I listed my symptoms. He shot me with steroids and told me to return in 4 months to see what effect this had and to decide what medication to take.

This seams to have had no effect at all and if anything has made it worse as my pain is now coming through the naproxen and my fatigue is making me go to bed by 5pm as I can't physically stay up. Did this happen to anyone else?

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  • I was diagnosed about 9 months ago and I'm still learning about the disease and I'm still not ok with it. It's a tough one no two days are alike.

    As you started with your fingers mine did as well. It went on for months until I saw my OBGYN for a yearly. I had photo graphed my fingers "joints " when red and swollen and when not. When I showed him he immediately referred me to a Rheumatologist. Thankfully I went straight into the right care. She put on Humira it didn't work for me so now I'm on cimzia.

  • Hello

    Welcome to our little group

    My condition started over thirty years ago after a load of private medicine they found out I was not kidding, and I had a condition, related to RA

    All the best

    BOB

  • Thanks, I feel quite lucky that I was referred so quickly as it seems to have taken a lot of people a long time to get to that stage alone.

    I'm sure I will be posting on here more often as it has been very reassuring to read about others experiences. Oddly enough the "bad day" posts are the ones that help.

    Robin

  • Sorry you have this horrible disease. Fatigue certainly is part and parcel, with me it was until I got the drugs. I am really surprised that you were only given the steroid jab... that is the usual thing that is done on diagnosis, but more usually, to go with it, you are started on a dmard drug, usually methotrexate, and you are then monitored to see how you get on.... in my case, it made a great difference, the fatigue went, and my pain lessended

    Obviously every rheumatology dept. Will be different, but in everything that I have read, a dmard is started immediatly, as these help to slow the disease down.

  • First off I'm sorry that it is so bad for you right now. The fatigue is awful I know. And impossible to explain to people, as saying you feel tired just doesn't really convey the reality. I tell people that I feel as if someone has unplugged me, so lost all ability to do stuff. I used to regularly fall asleep on the bus coming home from work, despite it being packed full and noisy. It will get better once you've got your disease under control.

    It does sound as if you've got RA, but we're not doctors so best to leave it to them. All I do know is that there are quite a few things that have similar'ish symptoms so sometimes they do leave it a while to be sure what you've got as they don't want to give you these strong drugs unnecessarily. RA can get confused with things like lupus and Lyme disease.

    From my experience the best thing to do right now is keep a diary of how you're feeling, and even take photos of red/swollen joints. And tell your rheumy dept how the steroid has effected you (or not as it might be) pretty soon - if they didn't give you a number to call then phone the hospital and ask. You might be able to get an earlier appointment.

    In terms of pain control the best person to ask is usually your GP. There are loads of different NSAIDS and some work better for some people than others. Also, don't forget the non-medical things that you can do, like heat packs, ice packs and wax baths.

    Oh, and it does take an awful long time to be ok with it! Good luck.

  • Hi I started with similar symptoms in approx September last year but due to travelling I did not receive diagnosis until March 2014. Apparently I have low level ra, seronegative which has been life changing for me in particular the life draining tiredness. I was given steroid injections as a "challenge" ie if I had the intermuscular injection and felt magically better then this meant that I have ra whichwas the case. I'm wondering if this is what is happening for you. Throughout all of this I was frustrated wanting to start treatment asap. How ever the drugs aren't a walk in the park as I know now. So may be better to know the you have ra before starting treatment. However delay doesn't help so suggest that you work with your gp to push for quicker help as necessary. Sorry to ramble .hope this makes sense .

  • PS Keep a diary and photos

  • Thanks everyone. I have been told to keep a diary of how I'm feeling, it's not quite as funny as Adrian moles and a bit repetitive. Day 1 hurt and tired

    Day 2 hurt ache and tired

    Day 3 tired and hurt

    Day 4 ooh red swollen joints, hurt and tired

    Etc

  • I did this too , ended up with 3 months of hurt and tired , gave up.. wouldn't have been a best seller !

  • this sounds very familiar , so sorry you feel bad , I was diagnosed last September and I am certainly not ok with it , it is frustrating to have your previous life disappear , it is early days for you and things do take a long time to get under control , I am still waiting , have been on methotrexate and leflunomide and waiting to be approve for anti TNF drugs , I am assured by all the lovely people here that it's a question of finding a treatment that works for you , meanwhile let of steam and ask for advice here . it's a life saver when no one else understands , wishing you luck x

  • Hi just to say that can be useful to rate pain and tiredness in your diary. doctors usually use 1 to 10, as it can show if you are getting worse or better.

  • Good morning. Sorry you've been diagnosed. I remember not wanting to accept the diagnosis, despite the obvious pain and fatigue. Mine started in my knee, then spread to the other one and moved to my ankles, feet, elbows, fingers/hands. It took me forever to get to the doctor, I thought I had just overdone it with the trainer so we changed my routine. Finally my trainer said she couldn't work with me further until I went to the doctor and was cleared, she didn't want to have me injure myself, God bless her. Anyway that was 3 1/2 years ago. I am now on Actemra infusions and still haven't been able to drop the prednisone, taken with sulfasalazine and plaquenil. So we'll see how the Actemra works, I'm on my 5th infusion. Hang in there and listen to your body. Also make sure to advocate for yourself with your doctors, if you aren't sure about something or a treatment, ask. Rating your pain and functioning over a period of time can help you in your meetings with your doctors. I hope you're having a better day today. :-)

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