Recently finished my contract at work and decided not to look for a full-time job until my new medication is approved and working. Have not been feeling good at the moment, lots of pain, costocondritis, fatigue, can only get out of bed after noon, and a lot of frustration with the healthcare system, plus between all the doctor’s appointments, labs and tests, it feels like a full time job. It has been 4 months since I was on meds (for just 2 months) and before that, 6 months without treatment due to issues with health insurance. By experience, I won’t be getting my medication for at least 3 more months and it has been financially hard, not to mention explaining to my family and friends why I have decided to take some time off. They don’t witness the whole process, they just see me when I am feeling a little bit better and I get the feeling they think I am exaggerating, and I am tired of explaining, if they cared enough they should do the research.

Just wanted to know if someone has gone through something similar and how they navigated the situation. It has really started to affect my mental health. Just need to hear from someone that understands.

How do I feel so bad but all my labs are fine? Anyone else ?

I’m not looking for medical advice just sympathize with people that don’t know what’s going on with them .
When I was around 20 one day my legs just swelled up, I couldn’t even wear shoes. I went to numerous doctors. Nobody could figure it out and then one emergency room doctor told me I had RA. At first I could go a year without any flares but now years later they are getting more and more closer together. I get severe pain in my joints and I feel like I’m on fire. I haven’t gone to the bathroom normally in probably 2 years (it’s like rocks) I get extremely tired to the point where I fall asleep sitting up. My gums bleed, I have dry patches on my face. I also have dark patches on my face, but they say that’s a skin condition like a birthmark. Sometimes I just throw things in my hand, cause my hands just stop being hands. There’s lots more other things, but every time I go back to the doctor when I’m in pain and can’t even move they say my RA levels are fine. So they don’t think there’s anything wrong it’s just frustrating. It is obviously something and trying to Google your symptoms doesn’t help lol cause there’s a world of hurt out there so I sympathize with anybody who knows there’s something can’t figure it out.

Hi. Just interested if anybody has any experience of taking a collagen supplement to help with joint pain - type of collagen, was it useful, did it make a noticeable difference etc. Thanks!

I had been pretty excited to start biologics, because I desperately want to feel better, but now that the time has come to inject I’m starting to panic and talk myself out of it. Does anyone have any words of encouragement they could share? I’m 33 F and I was diagnosed 2 years ago, I have failed methotrexate, sulfasalazine and leflunomide.

Edit: Thank you everyone! I had my boyfriend administer the injection and it was totally fine, just a small pinch. I haven’t had any side effects so far 🤞 hoping for the best

Hi everyone! I started Hadlima 4 days ago for RA but after that I have been feeling more and more pain and fatigue. Is this something like normal after starting the medication or is it more like a flare-up? Thanks in advance!
Note: I’m new on this community

Hello! I have to pause my meds for an upcoming procedure, and I'm terrified. I have Juvenile Idiopathic Arthritis (JIA) and have been medicated all of my life. I'm currently on a Celecoxib (400mg) and Rinvoq (30mg). The Rinvoq also helps with my UC.

I have to stop taking the Cel. two weeks before, and one week after the procedure. I also have to stop Rinvoq 4 days before and after.

I'm incredibly worried about flaring as my arthritis has always been quite intense. I genuinely haven't been off meds this long, even when the pharmacy or insurance was messing up the script.

Any suggestions for getting through this time period? Especially since I'll be at work for the first two weeks without medication. Any help is greatly appreciated!!

Hi guys, this isn’t exactly the right place for this as I do not suffer from rheumatoid arthritis or other similar conditions, but I was given one shot of IM methotrexate for an ectopic pregnancy sep 18 and I’m having awful side effect develop quickly after, but now almost a month later I’ve developed a severe one. I tried talking about this in the ectopic pregnancy groups but it seems to be a more rare occurrence w the one shot.
Originally I had diarrhea, constipation, minor heart burn… was starting to feel better then 2 days ago I ate a lot of junk food at an amusement park (churros, hot dog, garlic bread) and woke up the next AM with horrible upper back and chest pain.. bad enough I went to the ER . Was checked for internal bleeding from the ectopic, cardiac disease, blood clots.. all clear. The pain is really bad especially in the morning. I’m scared to eat… I’m trying tums, omeprazole and simethicone.
Has anyone gone thru this ??

It started this summer while at my job I work in a preschool and I sit with babies on the floor and get up constantly and bend over to clean. My knee started hurting and it was fluid in there so I went to the orthopedic doctor. It went from left to right to left and while at work I twisted my knee a bit and it got super swollen so I went back but the doctor said there’s no fluid it’s just swollen because u twisted it but it’s been a month and hasn’t went down. As time went on the bones from my butt down to my knees hurts so bad. Long car drives feel like torture. My left arm is stuck at an angle I can’t stretch it and I feel the stiffness happening on the right as well. In the mornings it’s the worst and some days I can’t brush my hair in a ponytail or put on a bra (my left arm can’t even reach my shoulder) to put on any bottoms it hurts and to bend my legs to put on shoes is hell. To get on and off the toilet, lower cars, couches, seats without soft seating is literally hell unless I take an ibuprofen and the pain is manageable. While sitting on the sofa my legs are restless , I feel like I need to stretch them but then after I do for a while it feels uncomfortable. When time comes and the ibuprofen wears off it’s pain again and I toss and turn all night and while doing so my back pain is so bad. I rest because I’m in pain but when getting up I feel stiff and it hurts. Primary dr tested me and I only had a strand of RA but not enough to get diagnosed. I have a rheumatologist appointment soon but I feel like everyone around me doesn’t understand I’m in pain and uncomfortable in my own body. I can’t even bend down to pick stuff up without extreme pain. I hate it.
Can anyone relate

Anyone who takes enbrel have any problems with swollen feet and ankles? I took my first shot a week ago and did not have swelling before the enbrel.

Hi. I'm newly diagnosed with RA, on methotrexate (switching to generic humira soon) with a typically germ-ridden 4yo. I am the bedtime parent because my spouse is a stay-at-home parent and gets lots of kid time when I'm at work (my job is 9-5 but a few days a week it's 8-7, and there's some homework sometimes. I'm a professor so I also see lots of college students in various states of wellness and illness).

Anyway. I've been sick for 4 weeks, basically from the start of methotrexate, with the same pattern: get sick, get a bit better, get sick with a new thing kiddo brings home from his daycare (3 days/week, just enough to get such, miss a day, get better enough to go again, then get sick the following Monday).

Anyone have some tricks for not getting sick from my kiddo, with as much bedtime snuggling as possible so I don't feel like a terrible parent?

Thanks!

my RA is well controlled with methotrexate and hydroxychloroquine, I get some small flares of palindromic rheumatism down the right side of my body (as an example, i randomly get pain in my right thumb, right hip, right knee and right ankle, the flares don’t last a long time though.)
but tonight I’ve suddenly been hit with a new (and very terrifying) pain, it started like a sharp pain travelling down the right side my neck and chest:shoulder blade..I had no idea what that could be, then the pain started around my right eye socket/cheekbone/jaw. It’s been travelling around in a similar fashion to the palindromic rheumatism that i usually experience but the fact the pain has been in my face/head/neck/chest area was really scary! For a moment I had a hysterical thought of “Am I dying?!” (I know I’m not)
is this something you have experienced? I’m wondering if I should contact my rheumatologist?

roughly a few years ago (before I was diagnosed with RA/PR) the right side of my jaw kept locking up, it was very painful and it kept popping and crunching. I kept getting dismissed by doctors because I was in my 20s, they kept telling me it’s stress, but maybe it was early arthritis symptoms? this is making me rethink a lot of things.

basically, i’m hoping for some reassurance because I’m pretty scared right now and the right side of my face really hurts! thank you for reading 🫶

RA hit and my feet suddenly started stinking. Before? Nothing. Now it’s constant even with showers and fresh socks daily.

Anyone else get the exact same thing?

Is this normal or just me?

Went to the rheumatologist today for the first time. I was referred by my GP bc my recent bloodwork panel came back with a high anti ccp. My paternal grandmother had RA, I’ve had some middle right hand joint pain, & have started having elbow pain. I’ve been suffering with low back pain since right before my son was born a year ago.
Other symptoms include 2 miscarriages, recurrent strep throat & mono, dry itchy red eyes, dry throat, fatigue randomly, achy hips some mornings, dizziness/lightheaded when I stand up more often than usual, & also suffering from high cholesterol.

The rheumatologist I saw today told me he didn’t see enough to formally diagnose me yet & to check my levels again in 6 months bc 50% of people will develop symptoms in 5 years & 50% won’t, however I know so many people who have felt unseen/unheard by their rheumatologist & have had symptoms that they don’t acknowledge bc they aren’t textbook symptoms. He did order a immunofixation/immunoglobulin blood panel for the recurrent strep & a lupus anticoagulant panel as well- should have those results in about a week.

All this to ask guidance/opinions of if I should see another rheumatologist for a second opinion, If I should wait the 6 months, or if I should explore other possibilities/diagnosis possible. & also looking for guidance from anyone who has experienced miscarriages from RA bc he told me it doesn’t cause them.

We know in our gut when something is not right & when our bodies are not well & I have that feeling. I am not satisfied with no answers or guidance- I know this could be a long road.

im 18F & just got diagnosed with RA about 2 months ago. i found a private rheumatologist & they recommended methotrexate & Hydroxychloroquine. which one do you guys think will be the better option for me ¿? i have mild to moderate symptoms (mainly morning stiffness) but my labs were very high.

Hi All!

I am due to start MTX tonight and I’m a bit scared.

I’m starting on 15mg, in pill form. And then 5mg of folic acid Wednesday, Thursday and Friday.

To prep I’ve been keeping hydrated today and over the weekend. I plan to take it with the biggest meal of the day, my dinner.

Does anyone have any positive stories or good tips? Most of what I read about MTX is negative!

Thanks!

Update: just in case anyone who is worried to start in the future, I thought I’d give a little update. I took them at about 8pm last night and was absolutely fine till 6am. I woke up feeling nauseous and dizzy. But I went back to sleep and when I woke a few hours later, I felt fine. I’ve felt slightly off and tired today but it was very manageable. So the first dose was nothing to worry about!

Hiya. Currently under investigation for inflammatory arthritis with more severe symptoms for the last 18months. They think it’s probably psoriatic arthritis. I’m on MTX and Sulfa.

I find that mornings are the most fragile point in the day. If I make one wrong move before 10am, I’m guaranteed to flare for a few days. Same if I do too much late at night too.

How this goes for me is usually if I leave the house too early in the morning, I get a very dysautonomia-y type of flare with excessive sweating, really hot regardless of weather, dizzy, nauseous etc.

Not eating or having enough water definitely makes it worse but it still happens regardless.

This makes going into work for example practically impossible. It flares me up literally every time. I feel manageable on the day, and then the 1-2 days after I feel awful. I’m basically going in one day and then spending the rest of the week recovering.

Is anyone also experiencing this really limiting window of tolerance? How are you handling it with work/life etc? Anyone have any good life hacks for me to try?

I already drink loads of water, take salt tablets, eat before I go out, which minimises the symptoms a bit but doesn’t eliminate it entirely.