1. Community
  2. Bones, joints and muscles
  3. Rheumatoid Arthritis

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

Prev
  • loulou282
    loulou282 hawaiichick808

    Posted

    hello

    im on Embrel and methotrexate(25ml) and 50g of amiltriptiline, i do drink 2 times a week sometimes a bottle of wine other times 4 cans of cider, my bloods v. i think its individual choice but i feel absolutly fine and pain free at the moment.  i agree with taking 1 day at a time. you have to forgive these people that do not know the pain associated with this awful disease, they are not aware of how badley it gets. my advice is try to eat well and rest well but excercise if you can manage it.  It took 10 years to get a proper diagnosis and 4 years to get the biological that im on now. seems inhumaine to not give suffering people these to begin with but i suppose this is the nhs for you. good luck hun xx

    • hawaiichick808
      hawaiichick808 loulou282

      Posted

      Thank you for your feed back, I really appreciate it.

      It's good to hear that someone drinks a lot every now and then. My doctor just scared me a lot saying that if I do more than 3 glasses, my liver could get damaged. And while I was on it, I was going monthly to get my blood work tested but in the back of my mind, it scared me so much. I sort of feel like being on that medicine, I can't be myself and just let loose and have fun with friends. It's like I constantly have to stop myself and rethink about the repercussions.

  • ann31981
    ann31981 hawaiichick808

    Posted

    Sorry to hear how hard it is for you. I hope you get lots of support and advice from this forum.

    I'm 36 but quite active - I'm a back country backpacker and I have a two year old at home to chase after. It is very, very hard to feel you cannot do the things you used to. But you are early in your diagnosis - it can take 3-6 months for your meds to take full effect, and even then perhaps your dose will need to be adjusted or something different tried. I hope your doctor finds the right mix for you, but it can be slow. I think the hardest part of RA is the fatigue, more than the pain - for me, it got better after about 2 Months on methotrexate and plaquenil.

    And I'm very sorry to hear you are not believed or supported by some of your social circle. It is so true, not everyone under stands this disease, and as a young person, you'll probably get more of that than others. To anyone who doesn't get it - eff 'em! This is serious stuff and your life is changed.

    • hawaiichick808
      hawaiichick808 ann31981

      Posted

      Hi there,

      So far reading everyone who has commented me is very helpful and supportive. It helps a lot reading what everyone else is going through. And it sort of makes me feel like I'm not alone.

      Your right, the hardest part is being fatigued all the time. From being active and then becoming so tired that you can't get yourself to do stuff brings me down. As for the pain, I sort of just bare with it, especially since I'm in retail, I'm a constantly using my hands, walking, and standing for hours in a day.

      But thanksfor the advice and it made me laugh in the end.

      Hopefully I will find the right combination of medicine soon.

  • tony09890
    tony09890 hawaiichick808

    Posted

    Everyone seems to think biologics work in every case - they don't!

    • lynn15111
      lynn15111 tony09890

      Posted

      But there are so many now, they would find one that would, bless your heart
  • djinvicta
    djinvicta hawaiichick808

    Posted

    Hi. I had the same at 16 years old. Don't be afraid, you are not alone! Tears ago, I was prescribed 32 soluble aspirin a day, yes, 32...it does work, I had no pain, but I have no stomach either, it was eaten away!.

    These days there are many new drugs. I am now 61, so for 45 years have tried many. If you look on this forem, the bio therapy drugs/injections seem to be working, I am just starting them this month.

    You are never TOO young for arthritis, it occurs at any age. Mine is my immune system causing the inflammation.

    Good luck, talk again to your Doctor.

    I have learnt over 45 years to adapt...life is good...

    There are many many more worse off than me...

    Regards

    Dave

    • hawaiichick808
      hawaiichick808 djinvicta

      Posted

      Hello,

      Thanks for the comment.

      That is crazy that you were only 16 when you found out. I can't imagine being told at that age.

      But you give me some courage knowing how young you were.

      Best of luck to you.

    • djinvicta
      djinvicta hawaiichick808

      Posted

      Hey! I'm fine! After 45 years, you adapt !!

      Maybe I'm wrong, but my Doctor was not bothered about my wine consumption.

      Enjoy...

      Dave

  • timothy11402
    timothy11402 hawaiichick808

    Posted

    First of all, I am sorry you have RA. I have had it for 15 years now (I am 70) and have a wonderful rheumatologist. My first few years was not so good with fatigue, feeling like my body had the flu w/o the head issues and the throwing up stuff. It took a while to adjust my meds. I take mtx and plaquinil. But taking turmeric in capsule form made a large difference. I am not taking 3 mtx per week instead of the 12 per week I started with. And I have been drinking cherry juice and pineapple juice as the research says this is helpful for pain. I still get sore ankles and wrists once in a while, but I have improved a lot.

    So hang in there. And you are not faking it. You know your body better than anyone else.

    One important thing:  If you have any physical problems that are out of the ordinary, and that you have not experienced before, tell your doctor. For example, I had a bout with chapped lips that I have never experienced before. At the same time, I had pimples around my lips. I mentioned it to my doc and he took notice right away. That is when he put me on folic acid. A couple of months later I had a blood test from my GP and they called me to tell me that my CBCs were out of range. To make things short, my red blood cells increased in size by 6% which apparently is a large increase. Turns out I cannot metabolize folic acid while taking mtx. So he put me on leukovorin which is the metabolized form of folic acid which I take 24 hours after I take mtx. So you never know if a simple question is appropriate or not. Take the initiative to ask those seemingly innocuous questions.  

    Best of luck to you.

    • hawaiichick808
      hawaiichick808 timothy11402

      Posted

      Hello,

      Thank you for your advice. I would have never thought about those random questions to ask the doctor that could end up as a really big thing in the end. I'll keep an eye on those.

      Thanks again for replying back.

      Take care.

  • paul75934
    paul75934 hawaiichick808

    Posted

    Naw I got it when I was 25 so I know we're your coming from people thinking your faking it I found running and jogging great relief and for clearing your head with all the thoughts of pain and tables apoinentry and other crap.

    • hawaiichick808
      hawaiichick808 paul75934

      Posted

      Hi there,

      Thanks for the advice.

      I wish I could go running and jogging more often like before but my feet is so sore all the time and I'm always so tired, that it makes it hard for me to get out. I know I should at least walk but I enjoy running/jogging a lot more and I feel like I'm actually exercising when i do that.

    • lynn15111
      lynn15111 hawaiichick808

      Posted

      Swimming is a good alternative or even just using the water weights in the pool to exercise will help and in time this will help with your energy level.  Get guidance as to what weights are useful for you in the weight room.  My feet were the first to be effected so I don't do treadmills, but those kinds of bikes where you push the pedals back and forth are good without wearing out your feet, but inventory how your knees will be using those.  Do an online search for exercises also

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.