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Coping with RA

Posted , 12 users are following.

hawaiichick808
hawaiichick808

Hi, I'm new to this forum. I'm 26 years old and found out a few months ago that I have RA. For a little over a year or so, I had finally wa getting myself back into shape and started jogging/running. And I never did like to do that before. Before I went to the doctors to see what was wrong, I was waking up with swollen hands and feet, was always tired, and I just thought maybe it was me over doing the exercises. Long story short, my boyfriend was telling me to see a doctor because it lasted for over 3 months straight and we didn't really know what was wrong with me. My physiscian said I have high levels showing that I have some type of arthritis and that I was too young to have it. But he went ahead and sent me to a RA doctor to do more tests that he can't do. I've been put on some medicine to slow the process but the one I'm taking, doesn't really help. I mean it's a lot better than before when I wasn't on medicine. Most days my hands and feet get a little bit sore but I'm always tired. I noticed that I don't have the same energy as before. I am more moody too.

I was just wondering if anyone was in the same position as me. I'm trying to keep my head up, but to be honest.... Deep down I'm not okay. I don't know anyone else who has RA that I can talk to. Everyone else just thinks I'm too young or I'm faking it.

How does anyone else cope with RA?

1 like, 31 replies

31 Replies

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  • amyfarqxo
    amyfarqxo hawaiichick808

    Posted

    Hiya, iv was diagnosed 2 weeks ago but haven't yet started treatment (they are waiting for blood test results before starting methotrexate) and I'm 26 too. I find it sooo hard being in pain everyday, normally if I had a headache or something I know that if I go to bed I will feel better in the morning, but with this it's the opposite. I am finding the tiredness really hard to cope with too as I'm shattered by 8pm so spend hardly any time with my husband just relaxing or watching a movie

    • hawaiichick808
      hawaiichick808 amyfarqxo

      Posted

      Hi there,

      As soon as your on medicine, things should get a little better.

      Is there anyway you are coping with this? My boyfriend said to try a forum where there's other people going through the same thing. Lol he means well but he doesn't know how it is being in some type of pain every day.

  • meg83590
    meg83590 hawaiichick808

    Posted

    I'm so sorry this is a dreadful illness with varing levels of pain and lethargy as well as limited understanding from most. The good news however is that there are newer improved medications that will improve your life. Take one day at a time and enjoy the small challenges like a daily short walk if you can. I too was very active before this but now I walk slower and enjoy looking at things more. So stop and smel the roses, don't listen to anyone who doesn't understand I've let go of some friends but gained others who do. Reach out to this group if you need a chat that's where I get my inspiration from. Take care

    • hawaiichick808
      hawaiichick808 meg83590

      Posted

      Hi,

      Thank you for commenting.

      I know that there are newer medicines but I'm having a bit of trouble because the medicine that my doctor wants me to take, it will affect my liver and I can only have 3 glasses of alcohol a week. And the one that won't effect it, doesn't really help me too much. I'm still having aches (not as bad as before) in my hands and when I stand for hours at work (because I'm in retail) my toes start to feel it too. My doctor says to just take it because I'm young and I don't need to have problems so soon. But I can't because I'm still young and I can't get myself to limit how much I drink just yet.

      I know your not a doctor but what would you do in my position?

    • meg83590
      meg83590 hawaiichick808

      Posted

      I'm sorry that is complicated I only have one or two drinks once a week with no problem (I'm on methotrexate and plaquenil)and there is no effect on my liver (although I'm told not to). I have a good GP (local doctor) that I discuss these issues with and she is very helpful as she understands the medications. Good luck with your decision.

    • hawaiichick808
      hawaiichick808 meg83590

      Posted

      hello,

      I was on methotrexate for the first medicine to try. But every now and then drink with my friends. And in one night, will be more than just 3 glasses. And my doctor kind of scared me about damaging liver so I got off of that.

      But thank you for commenting. It helps to know what everyone else is taking.

    • djinvicta
      djinvicta hawaiichick808

      Posted

      You should also be on Folic Acid tablets with Methotrexate. Talk to the Doc. I drink a bottle of French wine a day, no problem, Doctor here in France, says its ok, but I have regular blood tests..
    • hawaiichick808
      hawaiichick808 djinvicta

      Posted

      Oh I think my doctor had me on those two for a little while. I remember taking folic acid but he said I was only able to have 3 glasses of alcohol with methotrexate.
  • tony09890
    tony09890 hawaiichick808

    Posted

    There are quite a few young people on this forum with RA and they also are finding it hard to cope.   Why don't you try posting with a heading such as 'Young RA Suferers'.   

  • dancingG
    dancingG hawaiichick808

    Posted

    Hi,

    Sorry to her about your diagnossis. There are a lot of meds out there that can help you. It's a trial and error, until yu find what works. Sometimes you have to use a combination of one or 2 meds. Are you on Methotrexate? They will monitor your liverr, so don't worry too much. In the begining, they did blood work to check liver enzymes every two weeks, then three and then six. My doctor allowed me to have one drink every 2 weeks. It was hard in the beginning,but you will get used to it. You said your doctor said 3 drinks a week, that sound a lot compared to what I was allowed. Maybe others in this forum might comment.

    On the homeopathic side, curcumin and ginger are supposed to be anti inflammatory. You can find curcumin supplements in health food stores. I crush fresh ginger , add hot water and a little honey and make "ginger tea". Some people say fish oil heps them, but you have too take at least 6000mg a day to get the benefit.

    Foods such as eggplant , pepper, tomatoes and potatoes are supposed to be inflamatory, so try to cut down on those.

    I also do hot yoga (Baptiste Yoga) that has helped me a lot.  You will find things that will work for you, so dont worry too much.

    Good luck

    • hawaiichick808
      hawaiichick808 dancingG

      Posted

      Hello,

      I started on prednisone and methotrexate. But I couldn't keep to my word that I would only drink 3 glasses only. And I just read so much things that could happen on methotrexate that I got scared and asked to switch to something else. But right now I'm on sulfasalazine.

      I know that right now it's trial and error in the beginning, because my doctor tells me that too. But I think I'm just so anxious to get the right thing already. But it helps a lot to know what others are going through and knowing what types they are taking.

      Oh yes, I've been reading up on RA diets and what to eat and what to stay away from. Thank you for your feed back. (:

  • lynn15111
    lynn15111 hawaiichick808

    Posted

    your fatigue will be in the past if you go on biologicals.  insist on it.  you are so early in this disease, so you don't have extensive damage yet, and it will feel like you don't even have it.  find an ra doc that will do this for you.  not all RA docs are up on the best course of action.  google research on RA and biologicals.  Sulfasalazine and Methyltrexate and hydroquinone are back-ups and supplements at best;  only the biologicals will halt RA from progressing, but you will  need insurance because they are very expensive.

    • hawaiichick808
      hawaiichick808 lynn15111

      Posted

      Hi,

      Thank you. I never heard of biologicals. But I will try to research it on google.

      That's good to know that my fatigue will be in the past. You can say I haven't accepted it just yet. But I hope it doesn't take years for it to go away.

    • lynn15111
      lynn15111 hawaiichick808

      Posted

      I understand, I didn't accept that I had it either, but then a doctor showed me the x-rays and the way even my wrist looked.  I had to believe then.  But once you get on Humera or Orencia, (there are so many now)  you will feel better within just months.  Some people do an infusion which gets it into your system quickly without the build up over months.  It's done in an office setting.  Hope you can get a good DR. to put you on one soon

    • hawaiichick808
      hawaiichick808 lynn15111

      Posted

      Oh yes, my doctor was saying something about humera. But he said I would have to go through all the junky ones first then the better ones after.

      Is the infusions the injectables?

      Because he was saying I could do injectables. It would be a lot faster but I would be doing it myself?

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