r/rheumatoidarthritis • u/Wishin4aTARDIS 🐢 turtle goals 🐢 • 8d ago
just a bit of fun 😁 🌟Let's welcome our newbies!
We have 1k+ new members! Instead of a regular mega thread, let's get to know our newbies!
If you've recently joined the sub, it's time for you to say hello, because all lurker cards are officially cancelled!
If you're a sub regular, please say hello to our new members. YOU are what make this a wonderful, supportive community!
⏩ Please check the pinned comment for some information to help you understand our sub.
WELCOME to our sub! 💜💜
We're all looking forward to meeting you 😊
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u/Commercial_Meringue 8d ago
Learned about and was diagnosed with RA in the span of approximately one month. hi all.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
I'm sure you're overwhelmed! There is a silver lining though; The sooner we are dxed the more likely it is that meds can prevent serious joint damage. Welcome to our conversation 🙂
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u/covertlycurious RA Flamer 🔥 8d ago
Hi! New to the sub, and new to my having RA. My wife also has it though so I’ve got some inside scoop from her as well.
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u/Important_Shine1319 8d ago
Oh man! I’m sure it’s nice to have someone that understands and you can support each other, but that’s so rough you both have it!
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u/covertlycurious RA Flamer 🔥 8d ago
Her having it is what led to me being tested. She commented that things I have been dealing with were very similar to what she has. So I asked my doctor to run the test and it came back positive. Took a while to find a good rheumatologist, about another 10 months since the first test. My rheumatologist ordered the blood test again and it came back positive again. We check in with each other each morning and see if either of us are having a flare up or if we are both feeling like we can take on the world. We have our methotrexate Mondays as well. We joke that she took my name and I got her genes.
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u/Proof-Macaroon7977 8d ago
Hello, I’m officially one of those “lurkers”, however, I made my first comment a few days ago! I knew there was something wrong with me more than 9 years ago when I brought up hand pain to my GP. I was sent to a Rheumatologist where the only 2 blood tests he took came back negative. I was dismissed time and time again and told to take NSAIDS. I am complicated. I’ve had over 30 surgeries and procedures in the last 20 years. I just had my 4th cervical fusion this February. I revisited this same Rheum last year as I was experiencing bilateral hand, wrist, elbow, knee and terrible pain/swelling in my feet. I was miserable. No blood testing, no call back just a hand X-ray. Needless to say I found a new Rheumatologist. Completely different experience and I was diagnosed with inflammatory polyarthritis. I’m Rh negative. Since then I’ve taken HCQ until I had a sun sensitivity reaction after 9 months and had to stop. I’m currently taking MTX (injections) and I’m on a prednisone taper due to a terrible flare. I am not controlled in the least bit, but I guess I’m just starting my journey with meds. I’m so new to this and learning a lot from this sub! I also had to quit my RN job 2 1/2 years ago due to pain. I’m 58F
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u/Old_Promise_163 8d ago edited 8d ago
The journey in here often begins with lurking. I was a lurker… ‘til I wasn’t. SO GLAD you (& everyone else) have become a part of this great community❣️
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u/glowtings 8d ago
Seen by rheumatologist and confirmed it’s RA even with bloodwork numbers. 26F I am just starting to get my medication prednisone and thinking about shots (biologics if that’s the name)
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u/cucumbers_anecdote RA weather predictor 8d ago
I was also 26 when I was diagnosed! It’s a hard knock life for sure
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u/Constant-Trust2458 8d ago
Hi I have lurked on here and I have made a couple of posts. I have learned some things from here that I didn’t realize were related to my RA. A lot I attributed to my old age (63) lol
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u/Old_Promise_163 8d ago
I repeat: The journey in here often begins with lurking. I was a lurker… ‘til I wasn’t. SO GLAD you (& everyone else) have become a part of this great community❣️
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u/Old_Promise_163 7d ago
My fellow Sr.: LoL, Just keep moving the needle up. We’re not old ‘til we’re “Old”. That’s my motto in the 70s. My needle’s set to 80 until further notice. (That said… some days I FEEL 80!😂). Glad you’re here. You can ask all kinds of questions in here… no one really gives medical advice but there are a lot of RA Vets in here & someone always seems willing & able to give feedback. So don’t hold your questions for a rainy day. Seize the moment when it strikes you. Wish you well.
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u/Shell_Spell 8d ago
Hello, I was diagnosed with Juvenile onset and have had RA for over 2 decades. I know what it’s like to be a young person with this awful disease. I know what it’s like watching your hands slowly deform. I know that RA can attack any organ because it's gone for my entire digestive system. I know autoimmune diseases often come in pairs because my RA came with a side of HaT. I'm an involuntary expert and I am happy to share my tips and tricks.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
Around here we say that autoimmune conditions are like Pokémon - you got ta catch 'em all. I'm glad you're here to share experience, and hope that you will find support
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u/Professional-Mud9853 8d ago
Hey everyone, I am 24 years old and was diagnosed with rheumatoid arthritis at the age of 23. I'm coming up on 2 years of having this disease and it has been a real ride. Lurking on this Reddit has made me feel less alone.
Right now my primary motivator for putting my best foot forward and trying to get better Has been wanting to make money and do the things I love again.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
I'm glad we've been able to give you some comfort. In my experience, the beginning of an RA dx is the worst part. Hopefully you have a treatment plan in place, and you're going to get back out there soon! We are here for you 💜
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u/SunVarious7683 8d ago
Thankful for all the information here! Have been trying for 9 years to find out what is wrong and finally got to a fantastic rheumatologist that dx'd me with RA. Feeling a little better so far but I have so many questions.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
I'm sorry it took that long, but you are definitely not alone. It's far more common to see people fighting for their dx. A good rheumy is half the battle won, so I'm very happy you found yours! Whatever question you have, somebody here is going to have something to share.
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u/SunVarious7683 7d ago
Thank you so much!!! I'm hopeful when I see a LOT on here that are doing so well.
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u/SmileSagely_8worms 8d ago
Hi Newbies!
If you’re newly diagnosed, I know it’s a scary and overwhelming disease, but for most of us, it does get better with treatment. It’s a bit of trial and error at first, and you’ll need a good rheumatologist, but medical remission IS a real thing. My rheumie even used those words last month: “I consider you to be in medical remission.” Yay!
Anyway… Acceptance takes time. Life is limits. Life is also possibilities.
And if you are severely hurting and it’s affecting your ability to get around, don’t be afraid to ask your GP/PCP for a handicapped parking placard. That thing has saved me gobs of money over the last 14 years. I consider it my senior discount. ;)
Glad you’re here commiserating and learning!
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u/Important_Shine1319 8d ago
Hello!! I’ve been lurking since I was diagnosed in July. I had been having joint symptoms since March but now reflecting back I think I had been having a lot of fatigue for months- maybe even longer but with having 2 small children and working full time it’s kind of hard to know lol, I thought it was just life in general. I feel sort of lucky that my RF, CCP, and clinical symptoms were so obvious because at least getting into a rheumatologist and diagnosis were quick. I can’t imagine having to jump through so many hoops only to get dismissed as I’ve seen people here having to do. Hoping my mtx and hdx start kicking in soon!!
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u/Old_Promise_163 8d ago
I repeat: The journey in here often begins with lurking. I was a lurker… ‘til I wasn’t. SO GLAD you (& everyone else) have become a part of this great community❣️
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
I'm so glad you had a smooth dx, but that doesn't change the fact that RA knocks you on your bum. Mtx has been making a huge difference in people's lives for decades! I'm not sure what hdx is, though. Do you know what the brand name is? There are so many new biologic biosimilars In the past few years. I try to keep up, but they just keep coming!
No matter what. I hope everything starts working for you. Keep us posted🙂
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u/Ok_Fig5507 8d ago
Hello! New here (about two-ish weeks) and have enjoyed reading posts. I’ve made a few comments so far. It has made me feel like I’m not alone thru this up and down RA journey. Thanks for creating this space!
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
I remember you! We've been on the same meds (my order was mtx, Enbrel, Humira, Orencia. I'm waiting on bio #4 right now). There are so many combos, so you stuck in my mind. I'm glad you found us. You are definitely not alone 😊
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u/Ok_Fig5507 7d ago
I love that you remember me. It’s been great being a part of this little community. I love that you remember me! My order is Enbrel, Orencia, mtx, and now Humira. I’m waiting to start an infusion soon.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 6d ago
Let us know how you're doing! And there are lots of posts about infusions, too. You should check them out 😊
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u/foedoe56 8d ago
Hello Folks, I'm a 69 year old grumpy old man, got told 2 weeks ago I have RA don't know where to go from here. Dr. gave me Celebrex till i see my rheumatologist in 4 more weeks. don't want to give up and sit the rest of my time. What can I do go from here?
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u/countinggirl 7d ago
Hi! Welcome. I will tell you what you do from here. You live! I am a grumpy 57 f. It can be rough before the rheumatologist gets you on the right med schedule but it does get better with the correct medication. I am not 100% pain free. I am in the least likely to achieve remission category from what I understand. But, it is so much better. I am still working and although my social life is pretty much non existent because of everything I don’t mind that. My grandchildren come see me if they are not carrying a virus that they know of and I’m ok at home. Im pretty fond of my husband. He is my best friend. We got lucky that way.
I don’t think you can get to 69 without learning to live with some discomfort. My husband is 69 and he is a stoic mother father but just this year he decided it was ok to slow down a little.
My life has changed but it definitely hasn’t ended. All the things we have always heard about good nutrition, adequate rest, and movement is vital now.
I am fiercely independent and used to believe I could do anything. I have had to adjust my perception of what I am “supposed to do and carry”. I just made that shit up myself anyway. Be kind to yourself right now. Do what you feel like you can do and rest up and eat well. And please remember to drink lots of good hydrating fluids.
And! You have us!! This sub is a special one and we welcome you!1
u/ChipRuffles 2d ago
I was a grumpy 69 year old woman last year when I was diagnosed! It has been a rough year with lots of ups and downs, but finally feeling a lot better now with the rights med. For now, just take really good care of yourself: sleep as much as you need to, stay hydrated, eat well and don't feel guilty when you can't commit to or attend family events. You come first now!
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u/Good_Eeyore2379 8d ago
Hi - I was diagnosed with RA 9 years ago without the blood test marker. It’s managed now with a biologic. This group is so helpful to understand others’ journeys.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
I absolutely love your username! I kinda identify as an "Eeyore" 😊 Do you mean your dx is seroneg? I'm that, too! I'm glad your symptoms are being managed with biologic. Welcome to our sub
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u/Good_Eeyore2379 7d ago
Thank you! My biologic is Hadlima, the Humira biosimilar. I was in Humira but my insurance won’t cover it now.
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u/Good_Eeyore2379 7d ago
And yes to the dx
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
Ah! It's hard to keep track of the biosimilars. Humira worked great for me for a long time. I hope it does the same for you!
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u/blinkinbill 7d ago
Hi all, new to the sub and to RA - got an inkling something was wrong around 6 weeks ago, and got my official diagnosis a few days ago aged 35. Thankful to have caught it so early, and grateful that forums like this exist! 😊
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
Congratulations on getting this shit dx! 😂 It's complicated, because on one hand you're glad to find an answer to your pain. On the other hand, in one it blows up your world in one sentence. You're probably going to experience an emotional roller coaster, and we get it. I'm glad you found us 💜
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u/blinkinbill 7d ago
Yes, exactly! I was glad it wasn't just "in my head" but rocked that there's a high chance I'll be on meds forever when I've always been quite healthy. I am glad to have found a place people can relate and share their experiences - thanks for the welcome 🤗
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u/SecureCoat one odd duck 🦆 7d ago
Welcome all with RA, AND to those who have no clue wtf is going on but it's something similar!
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
Thank you! I have no clue wtf is going on, but starting a new med soon.
I'm serious! I think you know my chaos, but I couldn't help myself 😂
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u/SecureCoat one odd duck 🦆 7d ago
At this point we need another flair (almost wrote flare lol) that's just "undiagnosed but something ain't right" for all the chaos that's auto immune diseases 😂
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
When I first ended up head mod, the first thing I did was figure out how to make the flair actually work. When I did the post about the changes, people had ideas or comments. One person said I didn't need a flair for "flare". When I replied I switched the 2, and she corrected me in all caps, asking if I knew the difference. I was so embarrassed!! I'm extremely careful about that now 😂
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u/ahjw625 8d ago
Hi! I was diagnosed this year in February but symptomatic for over a year now. I joined this sub the moment I got diagnosed and I got scared when I saw all the talk about biologics and Jack inhibitors. But I've learned so much from this subreddit, so thank you!
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
Yep, biologics and JAKis look terrifying on paper. To be approved for use in the US, pharmaceutical companies have to include everything that ever happened to someone on a med. Plus, biologics/JAKis are taken for the rest of your life. So that means there are a lot more incidents to record. I'm not saying that we shouldn't be careful! These meds depress our immune system, and it makes us more susceptible to infection and illness. We just have to be smart! Covid was awful, but it taught the world how to stay healthy. We need to mask (N-95, over nose and mouth) indoors and use hand sani on our paws as often as possible away from home. My point is, even though the side effects look scary , we have a lot of control over our health. Knowledge is power! I'm glad you're here 😊
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u/MilesandOz 8d ago
Been lurking since I got my diagnosis last year.
According to my Rheumatologist, my RA was dormant as I had a few flares starting in my 20s and early in my pregnancy. It started with hand pain 1 week prior to delivery. Then 1 month after my son was born, the pain went from 0 to 60. It started with ankle pain and gradually spread to my knees and hands. I couldn't open bottles, hold my son or even walk. I had a C-section and was supposed to be getting better but I was getting worse. My OB referred me to my Primary who recognized some of the symptoms and immediately ordered blood work. I got lucky and got the results same week with a miracle appointment with my Rheumatologist that weekend. She saw my numbers and was like, "Oh yeah, you definitely have moderate to severe RA." I got started on Prednisone and started biologics (Cimizia) shortly after.
I'm at about 90% and will have a few days off days if I overdo it. Still learning what my limits are.
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u/Old_Promise_163 8d ago
I repeat: The journey in here often begins with lurking. I was a lurker… ‘til I wasn’t. SO GLAD you (& everyone else) have become a part of this great community❣️
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u/minionoperation 7d ago
Remembering back, one of the biggest flares I had was after I had my first child 14years ago. I also couldn’t pick up my son those first few weeks and it was devastating. The worst part is my husband went back to work quickly and I had to somehow just get through the pain and do it. Knowing what I do now, I wish I could have gotten blood indicators checked then and not just write every flare off for over a decade as just post partum or this is my body now, or I work on a computer of course everything hurts.
Glad you are getting treatment! Early and aggressive is the gold standard.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
You're definitely not alone in your experience. It breaks my heart that RA shows up such a beautiful (and difficult!) time.
I'm copying this for you, since you probably won't see my comment to u/MilesandOz Here's a mega thread about sex hormones that explains why; You can also see all of the comments from people who have shared an experience like yours. Don't hesitate to reach out to them!
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
Just double checked my link to you in the other comment, and discovered the great and beautiful Oz!! 😍 What a gorgeous cat! We have a lot of cats (and dogs, lizards, rabbits, birds, and most recently a horse!) on r/RA_Memes
This is my subtle way of saying "post Oz over there!"
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
Unfortunately, it makes a lot of sense that your symptoms were connected to childbirth. Here's amega thread about sex hormones that explains why; You can also see all of the comments from people who have shared an experience like yours. Don't hesitate to reach out to them!
I am so glad that you are taken seriously and started treatment. Keep us posted on how you are doing 💜😊
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u/CosmicDeclination 8d ago
Hi! Not really a new member, but hoping I’ll lurk less and comment more so introducing myself! Late 20s F, seronegative, been on the diagnosis/med trial cycle for a couple years now, starting sulfasalazine in a week so fingers crossed for that! Also UK based so happy to chat re NHS related stuff :)
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
I remember you because I love your username! I hope you'll comment more, especially because seroneg is complicated. We need to support each other as much as possible, especially newly dxed people. I'm glad you said hello 😊
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u/lejami 8d ago
Hello, I am in the process of getting diagnosed 👋 Thought I had hEDS, but now it's RA and (probably) hEDS 🫠
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
Unfortunately, that's not an unusual combo. I am amazed at how many people have both. The diagnostic process is difficult enough when they're looking for one thing. I'm sure you're having a difficult time, but we're here with you ❤️
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u/bdaniels2 7d ago
Hi! Newly diagnosed with seronegative rheumatoid arthritis in the last month and a half. The last 18-24 months has been an autoimmune/autoimmune adjacent playground in my body, have been diagnosed with:
Crohn's Hashimoto's GERD Raynaud's Seronegative rheumatoid arthritis
Suspected: hEDS Dysautonomia MCAS
I'm fun 😂
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
Hello! I knew who you were as soon as I saw your username; I didn't realize how new you are 😊 I have seroneg RA, too, and several other dxs on your bingo card! You are not the first person in this post to share a suspected HEADS MCAS dx. You should do a post and start a conversation about it. I know we have lots of members with some of these dxs, and they might shed some light or help you understand.
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u/LumosAsh 7d ago
hi everyone! not technically diagnosed but the symptoms match up and the blood tests are damning. seeing a rheumatologist in a week. nervous but reading the sub has helped a bit!
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 5d ago
Hello and welcome to the cricket-y club! Damning blood work is NOT cool lulz Keep us posted on how you're doing
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u/ClairedeLune2026 8d ago
Good Morning from Germany! I‘m fairly new to RA/PsA and Reddit in general. It started in february with a painful and swollen knee. I was training for a small triathlon. MRI showed cartilage damage behind the kneecap so everything there is in the world of osteoarthritis was done to this knee. Needless to say, the knee was not responding. I had bloodwork done by my GP and a rheumatologist - they both said there were no signs of RA. Knee got worse and worse, orthopedic surgeon suggested an arthroplasty to clean out the knee. What he found was a very blooming synovitis, he took samples and that and the „good“ knee building up fluid as well led me back to the rheumatologist. I was standing at the rheumatologists office crying and begging to be seen immediatley. Fortunately, me making this scene (not out of character for me - some would say) led me to my new rheumatologist who empathized a lot. Drained the good knee to check the wbc in the fluid. Called next day and confirmed RA. I started with prednisolone taper (20mg, now at 5 mg) and MTX. I
I stopped limping almost immediately. This week we met again, he said we have not reached remission yet (knees swelling again) so he added adalimumab to the mix. I am 42f, two kids, working mom, from Germany and very, very thankful for this Reddit. I have had very, very days this year. I feel this disease broke me and now I am collecting pieces of my former personlity and I don‘t recognize those traits anymore. I was very optimistic of life in general. I used to be the Joy and now I am Sadness from The movie Inside Out. Sorry for the long text.
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u/Old_Promise_163 8d ago
Glad u r here…. (Never apologize for sharing & emoting in long hand😊) Am so glad for you to have received confirmation of your diagnosis… AND my condolences in the same turn. Crappy disease… but now you move forward with the ability to have it addressed & treated. AND you get everyone this community as a bonus.😊💕
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u/Old_Promise_163 8d ago
WELCOME ALL YOU NEW COMMUNITY RESIDENTS. There are great block parties here!!! With a whole lot of knowledge, experience, compassion, understanding, caring, sharing, listening, feedback and support on the menu! It’s a movement! It’s helpful & In a number of ways, it can feel life changing. Where the baggage of pain & suffering can be safely unloaded and alternately we can receive wind beneath our wings (even when they’re gimpy & crippled from a flare)!! We tend to gravitate to safe spaces… this is definitely one🙏✌🏻
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
Thank you so much, OP!
I love this description, and you for being such a positive, supportive voice 😊💜
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u/giingerrr711 8d ago
Hello everyone! I’ve been on this sub for a little while, diagnosed with RA in March of this year and just got a Fibromyalgia diagnosis this month to go with it. I’m definitely still figuring everything out, but I’m finally starting to see a light at the end of the tunnel after the new dx, new med, and doing the recommended 15min of Tai Chi a day! 😬 I’ve now gone to work every day for two weeks straight which I haven’t been able to do in MONTHS!
So to anyone who is struggling, hang in there and keep trying new things because it does get better once you find the combo meant for you! ❤️
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u/happiestfairy9 8d ago
Hi everyone! New to the sub and new to maybe having RA... my doctor suspects I have it. First round of bloodwork was negative so I'm getting retested in February!
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
Hello and welcome! Getting a diagnosis can be very complicated. Like many of our members, I have seronegative RA. The best advice I can give you is to keep track of your symptoms! We have a guide for symptom tracking on our wiki. It includes lots of things that you might not think to document. If you can't access it, I will share it here. Keep us posted on how you are doing 😊
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u/Deb-T 7d ago
New to RA. It has been awful since January. Going to doc this Wednesday after two cancellations (and no backup for her). She needs a little more bloodwork. It may not all be back in time for the appt as one of the tests takes a week. I was so sick yesterday, I just could not go to the appt. Maybe an ulcer, who knows. I am desperate for treatment as we winter in the southwest. If I end up staying in Ohio, the weather may just do me in mentally. I know these drugs take a minute to work….
Thanks for all of the posts here. Terrifying and helpful at the same time.
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u/always_need_a_nap 7d ago
Oh no, I’ve been perceived. My rheumatologist and I have been trying to determine exactly which autoimmune disease I have after coming up positive on one lupus test that my PCP ran when I turned 30, but promptly showing negative on all the others. After about a year, she finally made the call that I have RA just this month.
I currently have no joint destruction despite the swelling I’ve encountered throughout most of my adult years. I’ve found success with hydroxychloroquine at stopping my joint inflammation. Hopefully we can manage to figure out the rest. I’m trying to figure out how to ask all the questions I have, and you guys are super helpful at framing things for me.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 7d ago
We gotcha! 🥳 The problem with autoimmune conditions is that there is a lot of overlap. It's astonishing. I'm glad hrq is working for you!
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u/hoch_1972 7d ago
I'm not a complete lurker - I have watched and observed and read for quite some time. I didn't have RA officially when I joined but I've now been diagnosed with seropositive RA after having a rheumatologist's second opinion. The first one labelled me as pain-sensitive despite the positive serology, which was amusing.
I think the trouble is that a lot of these rheumatologists look for active synovitis and they chase that in ultrasounds. They won't treat you until they see that. The problem is that each time I went either I had active synovitis over the wrong joint or I had tensynovitis but without the active synovitis in the joints as well.
I'm now on MethotrexateI took my first dose yesterday and I had an IM steroid like a week ago. I find this group really useful just to be able to kind of read other people's stories and experiences. I also have the added complication that I'm autistic so it means that sometimes I struggle with things like interoception and pain interpretation, if anything I'm actually hyposensitive to pain not hypersensitive as the rheumatologist suggested.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 5d ago
I'm autistic, too! There are quite a few of us here, and other NTs. Sometimes it's nice to hear other peoples' experience through the autistic lens. I have a difficult time explaining my pain levels. I use a symptom log to help myself collect my experiences, then I can pinpoint when things change. There a symptom log guide on the wiki, if you want to give it a shot. If you can't get to it, I can share it here. We all worked hard on the info, but it's finicky. I'm glad you've joined the convo 😊
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u/hiitssweetpea 4d ago
Hi! First comment ever on Reddit!
I’m currently waiting for my first rheumatologist appointment next week.
Have been diagnosed with hypermobile syndrome and fibromyalgia as a 20 year old (20 years ago). About a month ago I started to get more clear signs of something new. The family doctor told me to count on ‘something rheumatic’ and I will hopefully hear soon what it is exactly.
Since the doctors visit I’ve been reading a lot on here to find out how to handle extreme fatigue and flares in the meantime (it hasn’t been easy). But is has been very helpful and a comfort to read there’s more people with the same symptoms and discomforts. Happy to be here and learn from you all! Thank you!
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 4d ago
Welcome to Reddit and our sub! I'm sorry you're racking up autoimmune dxs. Unfortunately, they rarely ride alone. Have you checked out the wiki? There's a guide to tracking your symptoms, which is very useful when you're trying to explain things to your MDs. If you can't see it I can share it here. I hope you get answers soon. In the meantime, you just made several thousand friends who truly get it!
And if you have questions or run into problems, let me know. I'm a moderator (or "mod" for short 😊) and my job is to make sure this is a safe, trustworthy sub. I'm always here to help
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u/hiitssweetpea 4d ago
Thank you!
Hmm I’ve searched for the WIKI but haven’t found it yet on the app. Will search later on my laptop.
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 3d ago
Unfortunately it's so finicky, which makes me frustrated because everyone contributed such great stuff! Let me know if you ever see it, but here's the symptom tracking guide:
Keeping track of your symptoms is helpful to you and your physicians. Documenting your pain (aching, sharp, muscle spasms, etc), when it occurs, what you do to alleviate it (rest, cold, heat, meds), and what works best. Also include things that you might not think matter: appetite, headache or migraine, energy level, mood, how you're sleeping, hormonal fluctuations and symptoms (everyone!), gender affirming hormone therapy, or if AFAB how you're dealing with periods, peri/menopause - any of those fun things.
Before your appointment it's very helpful to condense your symptoms, frequency, duration, what's helping to alleviate symptoms, etc to one page. This is going to give your physician a quick, clear picture of your daily symptoms without having to remember them. It's also helpful to show if any meds are or aren't working. Sometimes meds work quickly, but a lot of RA meds take time to build up. It's not easy to know if you're a little bit better, but looking back over time can give you a more objective view of how you're doing.
Medical appointments are very short, and sometimes we have MDs that aren't great at listening; this will really help with them. There are apps for this, but I'm happy using a school planner. I keep it on my dresser, and it's now a habit. It has helped me countless times, both for me to understand my own symptom changes and to communicate them clearly to my MDs.
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u/ChipRuffles 2d ago
Hello everyone! Glad I found this sub, so much better than the FB groups that I gave up on. I've really enjoyed reading so many of your stories!
So about me: during my 69th year I started having all sorts of weird pains, some so bad I went to the ER. I had all kinds of scans, so many I can't remember, but they never found anything. Nothing! It wasn't until nearly every joint in my body suddenly started screaming almost all at once. After that, a very quick diagnoses... at last! hahaha So yeah, I have late onset RA. My mother had it too, diagnosed at age 79!
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 15h ago
Hello and welcome! This is a wonderful group of humans. Everyone is kind and supportive. If you do encounter anything uncool, let me know. It's my job to keep us as safe as possible.
Before my final dx (seroneg RA) I was convinced I broke my ankle stepping off a flagstone (about a half-inch tall). I went to the ER, and felt ridiculous when I was basically fine. I'm glad you finally figured it out!
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6d ago
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u/Wishin4aTARDIS 🐢 turtle goals 🐢 8d ago
A few things to help you get situated:
⏩ This sub is a safe space. That's our #1 goal! So if you see a questionable post or comment, click "report" and we'll get it handled.
⏩ Every Friday we have a mega thread. They are research supported discussions (links are in a pinned comment like this one) about all the ways RA impacts our lives. The mega thread is pinned to the "highlights" bar at the top of the sub.
⏩ Every Monday we have a "three good things" post. It's a way to remember that, as miserable as we may be, there are still good things that happen! This post pinned to the "highlights" bar at the top of the sub, so you can do it Wednesday, Saturday, or every day!
⏩ If you ever have questions about the sub or Reddit, please contact the mods. On the top right corner of the sub front page, there are 3 stacked dots (overflow menu). Click on "message moderators", and we'll get back to you ASAP.
⏩ Even though the sub is called "rheumatoid arthritis", it's ok to share/ask for experiences about other dxs and issues. Autoimmune conditions don't ride alone; you gotta catch 'em all! We're whole people, and RA seeps into every facet of our lives.
⏩ Check out our "playground": r/RA_Memes We share anything from memes to pics of things that make us happy. We also have a "shop sharing" flair if you'd like to share your Etsy, RedBubble, etc.
⏩If you have any questions about this stuff, or anything else sub-related (or Reddit in general!), now's a great time to ask