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23 yrs old, newly diagnosed, seeking words of encouragement

  • By lauryl

    As the title says!

    My name is Lauryl and I was diagnosed with RA in Feb of this year. Since then, I’ve been put on 10mg Methotrexate and then 15mg methotrexate. I’ve stopped taking prednisone (which I was on in dec. while waiting for test results) and the main is certainly more manageable now. I mostly have pain in my right hand, last three fingers, as well as sometimes on my right foot, first three toes. The methotrexate gives me awful brain fog though and I’ve been getting lots of colds lately that make it hard to sleep– as well as night sweats, unless I sleep with a fan.

    I’ve bounced between feeling optimistic and terribly, terribly pessimistic. Tonight is a very very pessimistic night. I’m worried that I’m just poisoning my body with this methotrexate and I’m fighting a losing battle that is already robbing me of my 20s. I’m terrified that my RA will progress aggressively and I’ll be disabled before even starting my career. My doctor, who is a very kind, supportive man, assures me that because we caught my RA early before any joint damage, he thinks we can prevent it in the future so my prognosis is good– though my anti-ccp was very very high. I try to remind myself of this, that as long as I commit to a treatment plan, I will be able to live a full life. But right now it really doesn’t feel like it. I’m 23– quite young, and not so wise, with no idea what my future might hold– so what I really need now is to hear that this isnt the beginning of the end of my life. That treatment can work. That people who have had RA for years and years are coping with it.

    Your story doesnt have to be perfect– I know that people come onto these forums in pain themselves. You don’t have to have a flare-free life or been in remission for two years or something. The statistics about being disabled after 5-10 years scare me is all. They scare me, and I would like to know that there are some people out there where it’s not the case. I also welcome any words of advice for keeping spirits up. I know that’s probably a super important part of fighting RA and I definitely could use it.

    Thank you,
    Lauryl

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  • By ktinflorida

    Hi Lauryl. I’ve had RA and Lupus for at least 12 years. I also have a rare neurological disease. I have been disabled for 11 years, but because of the neuro disease, not RA or Lupus. I’ve been on methotrexate (MTX) and folic acid for about 5 years. I was functional, but still stiff and hurt. I pressed my doctor for more relief and he added a biologic, Xeljanz. I haven’t had a flare since starting the Xeljanz 2 years ago.
    My life is not ‘normal’ for someone who is 47, but my big limitations are from my neuro disease. I think without the neuro disease that I wouldn’t be running half marathons like many of my friends post on social media, but I believe that I would be working and would socialize with people more.
    For me, my brain fog got better the more we treated the RA. The MTX took some time for my body to adjust. I ended up switching to the injectable version because of some of the side effects.
    I chose to treat my diseases aggressively to preserve my body as much as possible. To look at me, you wouldn’t know that I am sick. My joints are not mishaped. I can open my own bottle of water most days. Everyone is different, so I don’t know what is in store for you, but I believe that if you have a good doctor who is willing to prescribe some of the big guns, and you are willing to take them, that you will be able to maintain an acceptable level of your old life. You are unlikely to run a marathon, but it isn’t unheard of.
    The secret to this is to pace yourself and rest when you need it. If you try to maintain your old pace, more than likely you will crash. Learning that balance is the key. I’m not going to lie to you and tell you everybody will understand. I did lose friends because my illness became inconvenient. The friends that stuck with me or came back to me when they heard I was sick are true blessings.
    Things are overwhelming at first, but you will get in to a groove. We are here for you when you need to vent or have questions.
    Take care.
    KT

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  • By Chic1

    I am 54 woman and was diagnosed about 10 years ago. I am currently only taking Leflunomide and (occasionally Prednisone to combat flares I get about every other month). RA is definitely life changing. I still have to work a very physical job for 50+ hours a week and there are days when I don’t know how I can continue to do it. Because like the other poster I still don’t have any outward signs, most co-workers don’t understand why I don’t just take an aspirin or apply BenGay and just get on with it. Good news is that as you continue to live with RA you will learn more about your body and ways to adjust your movements, your schedule, your diet, etc. to alleviate some (maybe not all) of your pain. Also, just since I have been diagnosed there have been so many new medications that have come out that seem to help from reading some forums. My Kaiser insurance doctor doesn’t prescribe any of them but thats another post, lol. I am not great with words but I want to let you know that I am still able to live a full life. I do all the same things I have always done. Life is not over because of RA. I refuse for it to be. Many, many blessings to you!

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  • By jlewis09

    Hello! I’m 26 years old and was recently diagnosed with RA back in early May. I know exactly how you feel about getting this too young and feeling like you’re crippled all of the time. I had symptoms for about 2 months before I went to the doctor where he put me on prednisone, methotrexate, and folic acid. Being on the meds has helped me tremendously!! I almost feel like my old self with the occasional flare up. I know taking heavy duty meds are scary, but if this is what I have to do to feel better at this moment then I’m gonna take it and run! I have been looking up natural remedies for RA and what certain foods might trigger flare ups. I know dairy products have inflammatory properties so you might want to consider cutting out dairy. I have read that people who start a gluten free diet also feel better. It’s going to take time, but you will start to feel better and your sense of life will come back! Don’t give up and do lots of research. Best of luck to you and many blessings!

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  • By wannabe-healthy

    You are so young, and my heart goes out to you. One thing is certain, everyone handles RA differently and it’s so hard to let someone know what they will face based on our own experiences. I was an elementary teacher when I found out. It was my second career, and I’d been teaching only around 4 years (I had the symptoms, but it took my doctor a long time to decide if it was Lupus or RA. I was put on MTX and a biologic (Remicaid) right away. That is because treating it aggressively is the best way to keep joints from being destroyed. I ended up teaching 10 years, but each year became more difficult. I’m 63 and
    age is against me, I’m sure. (I ended up being diagnosed with other diseases as well). You’ve been given good advice from the young people who’ve written before me. Take one day at a time, and do the best you can. One day you may feel terrible, and the next day may be completely different. I never knew a disease could be this complicated, but I agree researching and knowing as much about it as you can is key. My doctors told me not to look up everything on the computer, but when I’m told about a medicine I’m going to be on, I want to know about it. I stay with reputable sites like Web MD, or Mayo Clinic. And this site is the best. Having a site to go to and vent has already helped me. Many people do not know anything about RA, I didn’t. If they don’t know, they can’t understand, so here is the place you will get people who understand. We are all pulling for you to do well and hope you will find the best mix of meds. I’m on different meds now than in the beginning. I’m on Orencia injections, and also Plaquenil and Arava.
    I wish you well, and hope and pray you will do OK. Sounds like you have a great doctor. Try to stay positive, that’s my struggle, even though I know attitude makes a difference. Ask anything on here and read the articles. It does help!
    Donna

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  • By Dave

    Sorry that you are having to face RA, Lauryl. You are in good company here. We DO understand your fears and questions, we have all been where you are. Sounds like you have a good Dr. who cares about you. You are doing the right thing by getting on a treatment plan ASAP. The meds are no fun sometimes and some of them will work, some won’t. Some of them will work wonderfully for some time and then stop working ( I just started my 3rd biologic, the one I just came off had worked really well for several months and then just abruptly stopped working.) It is a roller-coaster ride and sometimes it can be mind-boggling. Grab hold, get yourself a good attitude and fight. I told my wife shortly after I was diagnosed that RA might cripple or kill me but it would never defeat me. Come here anytime, you will find encouragement and people who care! Dave

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  • By LeeLee70

    Hello all, I have been diagnosed with RA just a little over 6 months ago. At first they put me on methotrexate and prednisone. That made me sick to my stomach, so we changed needs to Humara. That didn’t work for me so we went to Embrel, it worked for a while but then stopped. Now I’m on Actremba. It seems to be working for some areas, but my elbows and wrist feel like they are broken. My PCP put me on Cymbalta to help with my depression. I just can’t get a grip on this. I don’t know what I should feel or not feel. My elbows feeling like they are broken… is that that how RA feels? I had scopes done on both of my knees. They do feel better. I had a lot of snovia tissue that was causing pain. Meniscus and chipped knee bones. I hope to learn more about this and
    Get support. I feel like my family does not understand what I’m going through.

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    • By ktinflorida

      Hi LeeLee.
      Did you ever find a good med that worked for you? I was curious because you said MTX made you sick. Was that the pills or the injectable version? I couldn’t handle oral because of the nausea, but the injectable version worked for me. I was a little nauseous the next day, but it was manageable.
      I hope you found something. The ‘search’ period is very frustrating.
      Take care.
      KT

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  • By b.human

    Hi Lauryl, I am 20 and was diagnosed a few months ago and I know exactly what you feel like. I am letting my diagnosis motivate me rather than discourage me by deciding I am going to have a successful life and career just to spite it 🙂 in all seriousness if you ever want to chat feel free to message me on here, I’d love to meet other young people facing the same problems I do. Best wishes to ya 🙂

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  • By nikkil

    Hello everyone,
    I just wanted to tell my story in hopes of helping others. I was diagnosed with Ra about 5 years ago. They started me on methotrexate and Prednisone. I was loosing hair and getting mouth sores. I weened off the Prednisone and was just taking the methotrexate. It helped but I really hated the idea of it killing my immune system. I went online and researched alternative medicine. Cbd oil was in alot of my results so I rearesearched different ones. I found one that I ordered cause it was cheap. It did not help. Then I found a great quality one that was pure cbd oil. I ordered it. When it came I decided to go off all my Ra pills so I could tell if the oil was really working. I have been off all Ra meds and ibuprofen for a month now and my Ra is great! I am so thankful to have found this natural way to heal my body and not cause other problems. I truly didn’t think it would help Ra. Maybe headaches or back aches or something but not my Ra. Well I was so wrong! It not only helps my Ra but my fibromyalgia is gone, my daily headaches….gone, and I have more energy. I’m greatful to God and the company that makes this oil for giving me my life back.

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  • By CarolynMN

    Hi Lauryl,
    Your email brought back a lot of memories. I was 23 when I was diagnosed with rheumatoid arthritis. I remember laying in my bed at night, with the same fears that you have now. I still have them sometimes. I was diagnosed before many of the treatment options available now existed. My very severe disease became entrenched, and caused a lot of damage. I went through a lot of treatment options, including alternative medicine. Nothing helped until Enbrel. It’s been my miracle drug. I’ll be 63 soon, I’m still working. I agree with the advice the other wise persons who have responded have given. Take charge of your care, do your research, and communicate with your doctor. If the treatment plan isn’t working, complain and demand changes and referrals you think you need. (I was far too nice, or maybe just exhausted, to do so in the early days.) If you can, find support persons in your life;my mother, who suffered from lupus, was my rock. Her advice was to focus on each day, and not to ruminate about the future. You can’t control that, but you can control how you approach each day. Meditation has helped me deal with the pain I have. I learned to say no to things that I really don’t want todo, that waste my energy, and spend time on activities and people that bring me joy and fulfillment, no matter how simple or small. Kelly Clarkson’s anthem always does it for me. Hang in there! I’m thinking of you.

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  • By ohnopain

    Hello!
    I’m so sorry your having such a hard time emotionally. I’m also 23 years old, with rheumatoid arthritis. I was diagnosed when I was 16 years old, but I’ve had it since I was 14. In three years, I will have had RA for ten years. Before treatment I couldn’t walk, dress myself, brush my teeth and i could barley open my mouth to eat. My RA was severe, after being misdiagnosed they found out I had RA and started on Methotrexate injections. It literally changed my life over night! After 2 years I couldn’t deal with the nausea or hair loss so i switched to Enbrel. Which worked up until now that I’ve switched to zeljanz. I can tell you that for the most part, I’ve lived a decent life with RA. The biggest recommendation is to exercise (i swim) and eat right. It’s really hard to do either, trust me.. im a college student working on my career, but it’s worth it to work on your diet. My last advice would be to listen to your body! I’ve grown a HIGH tolerance to pain, so much that I can’t tell if something is wrong. Verbalize what is hurting, journal, and if anything seems different.. make note of it.
    When I think of my future, I think of what I want to achieve and the things I want to do. I refuse to let arthritis to set me back even on those days when I feel like giving up. Don’t let your RA scare you, you will be okay as long as you stay positive and don’t let it define you.

    P.S. we all have bad days, physically and mentally, let yourself have those moments

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  • By trebleinthekchn

    I know the feeling all too well. I was diagnosed in September of this year. It’s not easy to manage the day to day pain and symptoms, but the best advice I can offer is to put trust into your providers. I often reach out to my team if I’m feeling a bit more symptomatic than usual and I know that the result of feeling better won’t happen overnight. Be patient and if your body is craving extra rest, do it. I think we sometimes worry about the things that are out of our control. Focus on what you can do today and the rest will fall into place.

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