Rheumatoid Arthritis

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    13 Questions I Ask My Doctor to Help Manage My Rheumatoid Arthritis

    I walked, or should I say hobbled, into his office as a 15-year-old teenager. For months I had been in pain, barely able to walk, often relying on a cane or crutches to get around. He walked into the room and looked almost as young as me. Now, 31 years later, there is not a man I trust more — one who literally holds my life in his hands. With each visit, each test, and each new treatment, I know he’s working towards helping me with my health, my well-being, my quality of life, and, if possible, my healing. Dr. Meadors diagnosed me with rheumatoid arthritis (RA) and has been my rheumatologist for 31 years. In fact, there has not been not a life event that I have walked through that he has not been part of. He has become “part of the family,” and that relationship has helped me through many ups and downs. In fact, had it not been for him, I still might not have my additional diagnosis of Parkinson’s Disease because he was the one who finally got me to the right doctor to treat me. He has focused on treating me holistically, as a whole person, and has not reduced me to my illness. He recognizes that I am more than RA and understands the impact this illness has on  many aspects of my health, my relationship with my loved ones, and my quality of life. He has always ensured that I received the best possible care and has helped me through good and bad days alike, even when treatment did not go as planned or I suffered bad side effects. The importance of our patient-physician relationship cannot be overstated. He knows my family, my kids, and what’s happening in my life, and uses these things to help tailor a plan to keep me moving. I call whenever I have a setback or need some answers, and he always makes time to help. Our relationship has probably been one of the most positive factors in my health care, and I believe it has contributed to me continuing to do better than the odds say I should. The positive nature of this relationship has also empowered me to ask questions about my health and treatment. Dr. Meaders has always been willing to take time and ensure that I understand our healthcare plan for me and am comfortable with how we are moving forward. Too often, as patients, we fear asking questions or do not know the questions to ask. I think this is because sometimes something is missing from the patient-physician relationship. First and foremost, as patients, we should be willing to build the relationship, and if our doctor is not, we need to consider if that doctor is for us. Furthermore, through this relationship, we should ask the questions that need to be asked so we can get the answers to guide our treatment. Some questions that might be helpful as you and your doctor consider treatment options are: What are the options for treatment based on my symptoms and progression? What are the long-term side effects of the treatments we are considering? What other side effects that I need to be aware of and look for? Are there natural and complementary ways to treat that might be effective in my case? What will the different treatments enable me to do? What limitations will it place on me? Am I seeing RA where no RA exists? In other words, when should I be worried and when should I not? If I feel something new, is this RA, or is it just me getting older? How can I know the difference? What are some misconceptions about my condition, or even misinformation, that I need to be aware of? Is there information I can give my family to help them understand what I am walking through? Are their resources, including prescription drug programs, that can give information, assistance, and support when needed? Are there lifestyle changes I can make to more effectively treat this disease? Is how I’m feeling normal? Is this a side effect that we should be concerned about? Should we try something else because this does not seem to be working? As patients, we should be honest with our doctors about where we really are and how we are really doing. If we are not, how can we expect our doctors to treat us effectively? As patients, we should not be afraid to advocate for ourselves, our condition, and for the best treatment possible. If we cannot do this, we need to bring someone with us who will. If we have a good relationship with our doctors, they won’t be afraid of this advocacy and these questions; in fact, they will welcome it because it shows how seriously we take our health and our partnership with them.

    Paige Wyant

    19 'Habits' of People With Rheumatoid Arthritis

    Rheumatoid arthritis (RA) is one of the most common types of arthritis, affecting approximately 1.5 million Americans. Not all forms of arthritis are considered autoimmune, but RA falls in this category since the disease involves the immune system mistakenly attacking the joints. This leads to inflammation that causes the tissue inside the joints to thicken, resulting in pain and swelling. The effects of rheumatoid arthritis aren’t limited to the joints, though. RA can have an impact on other bodily systems, such as the cardiovascular or respiratory system, as well as a person’s mental well-being and ability to do everyday tasks. To cope with the many symptoms and side effects RA can cause, some people may find themselves developing certain “habits” or engaging in routine behaviors that help them through the challenges they face. We asked our Mighty community to share some of the habits they’ve developed – good or bad – while living with rheumatoid arthritis. If any of the following sound familiar, know you’re not alone. Let us know what “habits” you would add in the comments below. Here’s what our community shared with us: 1. “ I schedule everything with an extra hour in front of it. Appointments, grocery shopping, going places… because sometimes I get cocky and play myself! Lol!” – Dana C. 2. “D ownplaying how bad something actually hurts based on how I feel every day or assuming that something is going to go away soon when I know it won’t.” – Lauren O. 3. “ Inadvertently popping my joints because they feel so tight and hurt so bad.” – Rebecca K. 4. “Resting on my days off.” – Ambra D. 5. “ Clenching my teeth with the pain. I have a couple of chipped teeth now.” – Jen A. 6. “I’ve seriously deprived myself [of] letting go of who I used to be, and developed the bad habit of always being too hard on myself. I keep trying and trying to make myself believe I’m still the same functional person I used to love. I can’t let go, I can’t accept this feeling. I wake up everyday feeling like I’m in someone else’s body, living someone else’s life, not mine. Now I can’t even remember the feeling of who I used to be.” – Liz G. 7. “ Learning strong boundaries because I physically can’t do things.” – John H. 8. “ I’ve learned to exercise in new and different ways. I have become a more curious and open human being by seeking out and learning low impact exercises.” – Heather Y.F. Want to connect with other RA warriors? Download our free app to more easily ask questions, share your experiences, and receive support. 9. “ What I call ‘hands choreography.’ My friends [have gotten] used to it by now.” – Ye’ela B. 10. “[I’m] t oo scared to do mostly anything anymore because it swells my joints and causes way too much pain. I’ve developed extreme anxiety and try to work through the fear as best I can. Fear of not being able to even get out of bed because I decided to go to work that day…” – Katlyn S. 11. “ Saying I’m fine when I’m not.” – Jill C. 12. “ This may sound weird, but when a joint is flaring, I gently rub it without realizing I’m doing it. And when my hands and wrists flare and are giving off lots of heat, I hold them up to my cheeks to warm my face.” – Alyson A.K. 13. “ Taking naps when I can.” – Angie H. 14. “I take a picture of every joint when it’s flaring. The doctor never believes your level of pain nor the severity of each flare.” – Kristin W. 15. “ I have had to be much more aware of my lifestyle choices like foods I eat and dealing with stress. I have made so many positive changes I decided to become a health coach so I can help others make positive changes too.” – Valeri T. 16. “ Take the elevator no matter what!” – Katelyn W. 17. “ I constantly say sorry for being sick. As if being sick is inside my control.” – Heather Y.F. 18. “Rocking my body for comfort while in pain. For some reason it soothes me. Side to side or front to back rocking. Doesn’t matter. Just rocking my upper body.” – Carol S. 19. “ Live in the present, take things one day at a time. Don’t take things for granted.” – Jenny S. What’s a “habit” you’ve developed from living with RA? Let us know in the comments below!

    Connect with people who get it. Our Living With RA group is a tight-knit space built to provide support and advice for the RA community.
    Gina Samarotto

    What to Know About Living With Rheumatoid Arthritis

    This is what I want those who love me to know, and what I wish the rest of the world understood about living with chronic disease. Please don’t tell me to keep a positive attitude. I deal with rheumatoid arthritis (RA) every day and I know how dangerous depression can be. I wish I could simply “snap out” of it when those feelings take hold. You mean well, but telling someone struggling with chronic disease that they “need to keep positive” is condescending. It makes us feel as if you’re diminishing what we’re going through. Your pep talk doesn’t help us rise above, it can leave us feeling as if we’ve somehow failed. The reality is that I live with a lot of pain and a state of near-constant worry. When I am able to function well, I worry about how many of those days I have left. When I can’t, my feelings escalate into something that feels like the beginning of the end. People with chronic disease struggle with this and more every day, so please — don’t judge when we give in to setback or can’t quite keep all those emotional plates spinning in the air. And know that if you’re loved and trusted enough for us to reach out to you when those plates fall and shatter, we don’t need you to have all the answers — we just need you to be willing to listen. I, along with others struggling with chronic disease, are not trying to be martyrs. I am just trying to make you understand that pushing through the pain and depression is not an unknown concept. We do it more often than you might realize and deserve credit for the times we succeed, not reprimanded when we don’t. Mean what you say, say what you mean and please, make it easy for me to accept your help. When you live with chronic disease, it’s not easy to face the reality that you need help. It’s harder when that reality is met with vague, “Let me know if you need anything” statements – the kind that sound (because I think they are) like something people say when they don’t know what to say. I am blessed with people in my life who genuinely want to help. Yet regardless of how heartfelt the offer is, it’s never easy for me to hear. Please know that I appreciate that you want to help. If I’m hesitant, it’s because I hate accepting help — even it comes from the heart. For me, the thought of being needy is embarrassing, and the idea of being a burden terrifying. I am worried that I may unknowingly request something that you feel too personal or inconvenient or frivolous. And sometimes I’m so consumed by whatever challenges I’m facing, I can barely decipher what it is I need in the first place — let alone figure out how to ask someone else to provide it. It’s not that I don’t need your help, it’s that I don’t know how to ask for it gracefully. What I can accept gracefully, though are offers that don’t make me feel as if I’m asking the world of you. An, “I’m going to the drugstore, can I pick up your prescriptions while I’m there?” or “Are you feeling up to a visit this afternoon? I’m going to be in the neighborhood” or or even “Holy roots, Batman! When can I come over to slap some hair dye on that head of yours?” is priceless — and so much easier to accept. No, you really don’t know “just how I feel” – and I don’t expect you to. I have no doubt that your knees creak and I’m sorry that your joints ache. I know you honestly think you understand what I’m going through because you watch your grandmother/father/uncle/neighbor struggle with arthritis, too (hint – they might have osteoarthritis and yep, it’s a bitch but it’s not RA). I know you are well-intentioned, but unless you live with a chronic disease – RA or otherwise — you have no clue what it’s like. To put it in perspective, telling someone with RA that you know how they feel because you have arthritis in your knee is like telling Michael Phelps you know how he feels because you were on the high school swim team. RA causes my body to attack its own tissue, meaning I live with pain that is at best omnipresent and at worse, horrific. And despite having the word “arthritis” in its name, RA doesn’t limit itself to joint damage. Given a chance, RA can go after the lungs, heart, eyes, airways, blood vessels or organs. It’s insidious and loves to keep me — and my doctors — guessing. What I have is a chronic, autoimmune disease that on a bad day leaves me feeling like I’m coming down with the flu after being hit by a train and on a really bad day, lands me in bed with so much pain I can’t move – but fortunately I’m way too sick to really care. And in case that wasn’t enough, RA (and the drugs used to control it) weakens my bones — bones already made vulnerable by a lack of cushioning normally provided by healthy joint tissue. As a result, my bones are more prone to fracture — as my recently broken ankle attests. And as there is no cure. The best I can hope for is to slow the damage it causes — damage that once done, is permanent. I will have this disease for the rest of my life. So honestly, it’s OK that you don’t know how I feel – I hope you never do. It’s really, really lonely. Everyone has their own lives, and I appreciate that. Really, I do. But once the “newness” of being sick or injured begins to wear off and visits from concerned friends and family start to taper off, prepare yourself for the very real likelihood of spending a fair amount of time feeling alone and abandoned. Can’t imagine what that must be like? Let me help you. Imagine spending weeks in the house without ever going outside, seeing your friends or leaving your bed. Imagine being in pain and scared and heart-achingly sad over a holiday weekend where you have nothing to do but focus on how everyone you know had plans that didn’t include you (some may say this is a moot point given you may not feel up to participating — but I assure you, not being asked makes a horrible situation worse). Imagine living vicariously through social media, but signing off when you just can’t bear seeing all the festive posts from friends out celebrating while you’re so depressed it physically hurts. Imagine waking up in the morning and dreading the day in front of you because you know it means you’ll be alone for hours on end.  Imagine needing to talk to someone but not being able to because they’re all busy — or worse, they’re avoiding you because it’s unpleasant and besides, they just “don’t know what to say.” That is the kind of loneliness and despair and depression I’m talking about. “It could be worse.” Of course it could be worse, I could be dead. In the grand scheme of disease, there are many far worse than RA. That said, knowing others have carried burdens heavier than mine doesn’t leave me feeling particularly grateful to have RA. “You were doing so great yesterday.” Thanks for reminding me. And I might be doing great again next week. But right now — not so much. “You know, I bet you’d feel better if you stopped eating ___.” Seriously!? I can’t believe all the time scientists have wasted trying to come up with a cure for this sucker when all you really have to do is give up carbs/red meat/high fructose corn syrup/red dye/gluten/vodka… I assure you, if curing RA was that simple, no one would have RA. “Have you tried ____?” I know exercise is good for me. I also know that when I am experiencing a flare, just getting out of bed is a Herculean task. I do what I can, when I can. I understand that the supplements your sister-in-law’s brother’s godson took were nothing short of miraculous and I appreciate your wanting to help. But I am already taking enough drugs to down a wildebeest and I’m working with a barrage of well-trained specialists — all in an effort to manage my RA. So please don’t become offended if I don’t put your suggestion to immediate use.  It’s just not that easy. And please, do me (and everyone else with “moderate to severe RA for whom methotrexate did not work”) a favor and please don’t talk to me about the happy, rainbow-spouting wonderland drug manufacturers suggest waits for those who take their magical biologics. These are scary, serious drugs. No matter how promising those commercials look, there is no magic bullet. I wish there was – but there isn’t. For now, the best I can hope for is to be able to hang onto a little bit of my old life a little bit longer. We want to hear your story. Become a Mighty contributor here . Lead photo by Thinkstock Images

    SUPER CONTRIBUTOR
    Charles Mickles
    Charles is an author, speaker, and an elementary principal who has has battled chronic illness since he was 15.
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    RA Myths You Shouldn't Believe

    You don’t look sick. Wow, today must be a good day. You must be doing better if you can do that. Aren’t you a little young to have that? I know exactly how you feel. My legs get so stiff and sore some days. Funny that you can do that but can’t do this. How many times have I heard statements like this? These well-meaning people just don’t understand the battle that I and millions of others living with rheumatoid arthritis face every day. Years ago my family wanted to do an activity together, so we all piled into the cars and went for some fun. I was already struggling with two swollen knees but didn’t want to let my kids down. I didn’t want to miss out on this memory. I knew this would set me back for a few days, but I was going to do it. We did the activity, had a blast and came home. I was exhausted and in pain. Other family members started preparing dinner, but I had to rest and take a break. As I sat down to regroup, someone came up to me and said, “Well, I guess this is kind of convenient for you. You could play but now can’t help out? Guess this kind of comes and goes for you.” I smiled but did not answer. All the while, I was fuming inside. How could someone think this about me? I went upstairs, sat on the edge of the bed and just cried. (Yes, men do cry, and that is OK.) My wife came to the room and sat beside me. As I told her what happened, she was livid, but I didn’t want her to create a scene. As she sat there and hugged me, I said, “I don’t know how much longer I can keep fighting. I am so tired.” Twelve years later, I am still fighting. It’s never easy, and I haven’t forgotten that day. When you battle chronic illness, it is hard for others to understand the daily battle you face. Sometimes there is so much misinformation, misconceptions or just plain misunderstandings about the battle we face. It becomes clouded and more difficult to fight; we are battling not only the disease, but also people’s false beliefs about it. Too often these misconceptions lead to lack of empathy and can hurt the person facing that battle, as their struggle is unintentionally minimized. If you know someone living with RA, don’t fall for these myths. Instead seek to understand the battle your loved one is facing: RA is not just for old people. RA can affect anyone. I have battled RA since age 15. It affects people of all ages, and for those younger patients, it can become very isolating. Often the only people they know living with RA are 2-3 times their age. One of the most terrifying statements for us is, “You think it’s bad now? Just wait until you are 50 or 60.” It’s not always “visible”. For some, it can cause deformity in joints, but for others, it does not. My hands and joints look OK, and unless I tell you, you wouldn’t know I have had my hip replaced three times. People with RA don’t look sick. If people saw me on the street, they might not know I have RA. However, with this disease looks can be deceiving. Like many chronic illnesses, it can look different for each person. Even a good day is a painful day. Pain is the white noise of our lives, and it is there all day, every day. Some days we might feel better, but even those days are still painful and a struggle. RA is not “just an excuse” to get out of things. Don’t get me wrong: I love to joke, and sometimes I try to play the “RA card” as a joke. In reality, it’s not just an excuse to get out of things. I’m not faking it, and some of the things I hated doing before are the things I miss doing the most. When I do one thing, I am often trading off the ability to do something else. But I promise that I’m not just trying to get out of something. There is no cure. I’m not getting better; in fact, I am getting worse. Every day my body is attacking itself, and it gets a little worse. Some days, I do have less pain, but often that is about as good as it gets. RA is more than just stiff joints, and it is more than “everyday pain.” I know you’re trying to be sympathetic and relate, but sometimes it minimizes the struggle we are facing. Being done is not the same as being suicidal. Being done just means I am tired, and I need a break from fighting this “glorious” disease. I have been “done” many times in my battle. Some days I will not be OK, and I’m just tired. Please, try to appreciate that. I’m not the only one struggling. The biggest misconception of this disease is that I’m alone in my battle. However, there is nothing further from the truth. Everyone in my house is fighting this disease, struggling with its effects and hurting with me. My wife and kids miss out on things, and my parents and sisters hurt when I hurt. It affects every aspect of my life and the life of those around me. This is the hardest part for me, seeing how it affects my loved ones. If you know someone living with RA, be there for them. Listen to them and take time to care for them. Don’t look for the perfect thing to say; simply be there for them and love them – all of them! Be present in their lives, and help them find the strength to fight, even if for just one more day. Charles Mickles, author and speaking. He has written, Mine’s Parkinson’s, What’s Yours? and What Christmas Really Is All About? You can follow his story at www.minesparkinsons.com .

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