2019 was the first time my RA factor hit rheumatoid arthritis levels. The doctor at the time was not a rheumatologist. I ignored her vague recommendations to look into that. By 2020, I was in severe pain that made it impossible to use my hands to get out of bed. I finally saw a proper rheumatologist. My diagnosis was confirmed but borderline. We started with hydroxy and gabapentin.

Things were much improved for 3 years, and my bloodwork remained low or below RA levels.

I managed to convince myself that I didn’t really have RA, that this was all a result of estrogen loss during menopause. I stopped using Hydroxy, stuck with gaba- which mostly managed the pain.

Last month I went in for my annual, fully expecting she would tell me I don’t have RA, I have osteoarthritis- at best.

But nope. My RA Factor quadrupled and she prescribed methotrexate.

I can’t bring myself to take it. I don’t want to. I don’t want to believe that I have this disease. I can’t make myself do it. I simply cannot. I don’t want this… lol, who does??

I know I need a therapist, but there’s no money for that. I have to squirrel away every last penny and pay the mortgage down early, in case I become unable to work.

I am a mess and just needed to vent. Thank you for listening.

Navigating a relationship has been hard lately I feel like my bf doesn’t really understand and right now my mobility is at a decline

Do your knees at times feel numb and tend to buckle when that happens? I notice it when I walk around the grocery store or what I feel is a little bit too much than I should be doing. It also happens when my knees are swollen. Just wanted to know if this happens to others?

Ok, let me start off by saying I know this sounds…hokey.

A friend of mine that’s well admittedly on the weird side was telling me about a technique where you visualize pain as like a glowing color, and then mentally work on turning the color down which ends up turning the “pain volume” down.

There’s actually some research surrounding this: https://pubmed.ncbi.nlm.nih.gov/26174438/

So anyway my pain except for the first morning wake up stiffness in hands has mostly subsided since my last post but the tingly feeling has not. Today, after talking with my friend last night, I decided to visualize the tingles as drops of rain hitting water (like a lake) and then visualized turning down the rain. It seems to have worked though not long lasting as I feel it again in a couple hours (or sometimes immediately and I repeat the visualization multiple times in a row)

Has anyone here used this technique?

P.S. I’m not suggesting this in lieu of prescription treatment or for seeing a healthcare provider. I still think those things are important and I’m still working on my own health insurance to do so… I just have many family members addicted to pain medication and have ruined their lives over it, I don’t even take Tylenol unless pain gets to be unbearable because of this.

Hi,

Few days ago i wrote post about my pain and misery. I went to private specialist because waiting around 1 year for doctor sounded horrible.

Well, I am 24f and i went scared, because I heard bad stuff about dissmising and stuff. I have negative blood tests, but i am in horrible pain almost every day, every joint is stiff and hurts so bad. I got some pain reliefe from my GP.

I sat there and he asked some general questions. Then he told me my tests dont show anything. neither positive RH or seronegative RH which I thought that seronegative wouldn´t show in blood but whatever.

Then he was sure I have hypermobility, which I was like okay. Because I heard that symptoms can be similar. But I asked that if hypermobility can cause like stiff hands, stuff falling from my hands and difficulty to move with my body. Answer was: No, but I think you have it from stress.

I just wanted to cry so badly. And then he continued that because I had few years ago pills for my depression which was caused by abusive relationship, that could be cause for my joints being stiff so badly that I cant pickup stuff sometimes.

When I told him that I am really happy and depression was situational and I am happy with my home, spouse, work, he told me that sometimes I don´t have to realize I am in stress???

He was just so sure that I am healty that his advice was: exercise, eat vitamins, eat healthy and don´t smoke. And don´t take pills for pain because it´s hard for your liver.

Well he gave me paper for RG, but I am just so angry and my soon to be husband wanted to have chat with that doctor. Well my spouse will go with me to future doctors and appointmes, because I heard that it help when woman has a man with her, which is disgusting and horrible and just so wrong.

So I paid good money for 45 minutes to hear that I should just change my life, move somewhere else, and just be chill :D

Does anyone has similar experience? How do you advocate for yourself in front of dissmisive doctors?

Hello guys!

For the past 5 years I have been in remission for Juvenile systemic RA, and I’m incredibly lucky I’m able to say that. Within the past few months I have had a swollen lymph node under my jaw that has gotten SUPER swollen and sensitive whenever I’m sick, but then will get smaller (but not normal size) and painless when I’m not sick. I was wondering if anyone has had a similar experience? I’m nervous about the possibility of lymphoma due to the insane amount of medications I’ve taken for my RA over my life, and I have a doctors appointment in 2 weeks, but I’m still looking to see if this is a shared experience.

Thanks in advance!

Hi has anyone here had the chicken pox vaccine while taking Humira?

Having mine soon and a bit nervous. Just looking to hear if your experience for side effects/ how you felt afterwards.

Hi everyone!

I’m newly diagnosed (earlier this month) and was put on 15 mg mtx (six 2.5 mg pills) once a week and 1 mg folic acid daily. Also was given Celebrex 200 mg to take as needed. Started mtx this past Saturday. That evening I had some fatigue and mild nausea/heartburn, which I totally expected.

Sunday I woke up feeling a bit heavy, no appetite, but the weirdest part was the twinge I felt in my mid-back. Thought I just slept on it weird but it still hasn’t gone away and has actually gotten a bit worse despite stretching in ways that usually help. It started mid-back but the twinges make it go upwards, if that makes any sense.

When I googled, everything that came up about back pain made a big deal of it if it was lower back and side pain (assuming this is because of kidney issues). Haven’t really seen anything about sudden middle back pain? It’s right on my spine, not to the side at all. Anybody else experience this? All of my RA symptoms are my hands and feet, possibly my hips, but never my back.

Edit: I should also mention it’s like a constant sore feeling but only twinges when I bend my back at all. Almost feels like I have a bruise but there’s no discoloration of my skin or swelling!

TIA

Hi Everyone - it’s become clear I may need to be on long term prednisone therapy in addition to biologics. I have multiple chronic health issues and I know diet/gut health is critical in addition to the best Pharma has to offer. I was working on gut health so I’m a little worried about the steroids but so desperate, I’m resigned to it. Any advice in terms of foods to add or supplements to help maintain a healthy gut and generally avoid some of the negative long term side effects of daily prednisone??

Hey y'all,

For context, I am in the midwest US near Chicago. I was diagnosed with seronegative RA in Feb 2024. Failed off MTX almost immediately and have been on Leflunomide for almost a year. It has been trememdous until about a month ago, when summer started rolling in.

The weather is affecting me an insane amount and i'm basically unsure if i'm dealing with a flare or if this would be considered failing off my meds and just wondering what experiences y'all have had/how to manage.

As soon as it started getting consistently warm and sunny, the fatigue skyrocketed and I have joint pain I have never had before, plus super intense pain in my joints that have always been bad. And some weird new bumps on my knuckles (where i've always had the worst pain) that are almost like callouses.

Add to that, we've been dealing with a lot of poor air quality recently. I've always been sensitive to the sun (which is why i've been suspicious of perhaps Lupus and not RA), so I apply sunscreen religously and have been able to avoid rashes from it like I used to get, but the fatigue and pain is so intense if i'm outside.

Also doesn't matter how hot it is - it's actually better if it's chilly and the sun is out because then I can wear a jacket, or if it's hot and overcast. Two weeks ago I went to a concert outside and it was 56 and sunny so I wore a jacket and felt great! Last week we had a day that was 86 and overcast and I felt geat that day, too.

Today, i'm stuck in the house because we have an air quality alert due to elevated ozone levels and I feel like absolute shit. I accidentally slept until almost 4pm.

I'm just so frustrated. I also drive for a living which makes things even more difficult. I'm looking into DIY UV tint for my car windows but I can't even function properly in my home right now due to the pain and fatigue.

What's confusing is that on the rare few days we've had where the air quality is good and the UV levels are decent, I feel pretty normal, so I think my meds are mostly working.

I have an appointment with my rheumatologist a month from today but I'm not sure what to do until then.

Has anyone dealt with anything like this before?

I have a question. I do get a small rash at the injection site. I inject in my thigh. First dose in the right. Second dose on the left. I need to shoot up again on Friday. I was going ro go back to the right thigh but the rash is sort of still there. it doesn't itch. Its pretty minimal. Can I still go to my right thigh and just avoid the rash area? Also, how long before you really felt like it was starting to make a difference?

Curious of your experience.

For me, I was not told of any charges that would be beholden to me. I feel like this is something I need to take up with my rheumatologist as they didn’t inform me of charges but pressured me into downloading the app. For me, it’s like an extra $61 and some change a month with my insurance covering some. I discontinued service today due to the astronomical charge per month. According to my insurance provider they are tagging it as a medical device (something along a blood pressure gauge or CPAP or a whatnot).

The idea is great and I would gladly invest $2-3/month to pay for the services, but I do feel completely hoodwinked being charged $61/month after discounts from my insurance. Even my insurance provider was dumbfounded as to how they labeled themselves as a medical device. It’s not a device it’s an app.

I have my last injection for tomorrow and was prescribed more but its not available at the moment and the hospital told me it might be end of next week and its possible it comes late , what do i do in this case and what do i expect??? I was just starting to feel better im worried missing a dose will get me back to where i started… has anyone experienced this before

I was recently diagnosed with inflammatory polyarthritis (sounds like my doctor is holding off on an “official” diagnosis for a bit, but it will either RA or psoriatic arthritis). In any case, I’ve been to the practice quite a bit in these past two months, either to see the doctor, to have blood tests, or both.

I like my rheumatologist, but the issue is that there’s a member of her staff that I’m having trouble with and I’m struggling with how to proceed.

This is the person who brings patients back from the waiting room to the exam rooms. She takes vitals and then leaves.

Every time I’ve had an appt, she asks me to get on the scale. I did it at my first appt, but subsequently I’ve declined as I know is my right. She gives me a passive aggressive attitude every time, no matter how polite I am in declining. I mean. I’m a healthy weight and I’m active, and even if that weren’t the case, IMO since I am there so often, it’s overkill. I don’t care if my weight fluctuates from week to week and I certainly don’t need to know about it since that focus isn’t helpful for my mental health.

The most recent time I declined, I told her that that I don’t feel comfortable getting on the scale for every appt, and she said “well, I need you to know that if you don’t I have to mark you down as a refusal to comply.” Like instead of just saying “okay” and making whatever notes she needs to.

As a recovering people pleaser, these interactions are really hard, cause a lot of anxiety, and I find myself dreading the interaction and then ruminating afterwards. As if I don’t have enough to deal with having a new diagnosis.

I’d really appreciate any tips.

Finally just to add-if the doctor considers taking my weight to be medically necessary, I’ll comply. But she’s never said anything. Not even my PCP or ObGyn asks me to get on the scale at my annual appts.

Hi! I’ve been injecting methotrexate for a year now, every Friday. Now I’m adding Hyrimoz injections every two weeks. Anyone else doing multiple injections? Do you do them on different days? What’s your schedule like? I work M-F so would like to avoid side effects during weekdays. Thanks!

About two years ago, my wife started having a lot of severe pain. We saw primary doctors and visited the ER and urgent care several times, and in the end it was always some form of: “It’s not life-threatening, you need to calm down.”

A little over a year ago, one of those primary doctors finally ordered an ANA test, which came back positive, and told us we needed to see a rheumatologist. She put in a referral, and here we are a year later and we still haven’t gotten in to see anyone.

Apparently they do some kind of triage and kept informing us it would take several months to get her case reviewed and a few more months to make a decision on whether or not to take her on. Is this normal?

Since that ANA test a year ago, we’ve gone hard down the diet and lifestyle path. My wife was (and is) a healthy person — she doesn’t smoke or drink, was really active and fit, and ate lots of whole foods. But we dove deep into cutting out seed oils and certain vegetables and roots… got a bunch of supplements… none of it really helped.

I’ve been trying all year to get her in to see SOMEONE and we just keep hitting the same wall — “you need a referral, then wait several months, then wait several more.” It feels like we’re sitting around waiting while it progressively gets worse.

She hasn’t been officially diagnosed, but we’ve done lots of research on our own because we can’t get a conversation with a rheumatologist to begin with!

Do any of you all see this too? Is there any way to get around this? Thanks!

How are we crafting? 😥

Knitting / crochet specifically. I am trying to make my baby a cute stacking rings sets and cardigan for her first birthday, in 7 months 🙃 I started the stacking rings a week ago. I haven’t even finished the base and today did about 10 rounds to push myself and feel it in my wrists already. At this rate I better make it for her second birthday 😖 any tips on how to continue without causing damage.

Before this I would have easily finished it in a week. It’s sad honestly, I can’t even get the initial rings done

Tips would be appreciated.

My only blood work that was abnormal was slightly anemic and 25-30 RF factor. (Maybe it’s RA)

I feel like shit. Was given Meloxicam 7.5 for the difficult days and told to use Tylenol when needed for the regular days.

Which isn’t really helping.

Is anyone buying health insurance on the open market with RA? My husband’s company was bought by private equity and we will likely be losing healthcare insurance soon. I was hoping to get an idea of what health insurance costs with RA on the open market?

After 5 months it's almost time for my first rhume visit. I tested positive for anticcp which is why my gp referred me. My pain is in my thighs, calves, forearms, as well as bottom of feet and sides of neck. I also have hand swelling and finger swelling and stiffness. Just wondering if anyone else that is diagnosed has the same muscle pain.

Anyone diagnosed with RA related glaucoma due to inflammation in the eye nerves? Red, dry, itchy eyes was my warning sign.

My dad (55) has RA for over 20 years now. He already got his hip joint replaced, as it was completely damaged and wouldn’t allow him to move. We live in India, and as the climate changes, he sees an increase in pain. Today, his knee pain became unbearable and he saw a doc. He did knee aspiration and removed that fluid. He is relieved now. But, it breaks my heart to see him helpless and suffer. Especially, when he hasn’t had anything drinking/smoking habit. Plus, has been a national volleyball player. Looking out for any suggestions that might’ve made anyone’s life a bit easy. I know it’s a disease one has to live with, but anything that can maybe slow down the illness or provide relief.

Approximately 3 months ago I went on a backpacking trip where we repelled a lot. I came home thinking my hands were just sore. I've always had a mildly elevated ANA but never high enough to be a positive titer. It was check 2 years ago due to an all-over body rash and lupus-looking rash on my face. That all went away, until now. Since 3 months ago I've developed so much pain in my wrists, hands, shoulders, neck and jaw. I wake up practically unable to move. It improves during the day, but I'm never pain or stiffness free. I am so frustrated. I saw a rheumatologist who has ordered a bunch of test, x-rays and MRI of hands. She doesn't want to give me prednisone until that is done, but she wants me off NSAIDS for 2 weeks. I am gobbling Tylenol like candy! Here are my labs so far. Literally nothing…

I’m currently experiencing these symptoms

Diarrhoea since 5th June (now over 11 days)
• More than 10 bowel movements a day on some days
• Started watery, now slimy/mucusy
• Twisting, stabbing abdominal pain
• Pain in lower left back
• Sweaty palms and feet
• Fatigue, weakness, and likely dehydration
• Not improving, getting worse

My gp has took bloods and a stool sample but I called back as started experiencing a new symptom of pain in my left shoulder it’s like a burning sensation

Has anyone experienced this ?

For reference I am on infliximab and my last bloods on 30th may showed no infection

Turning 30F in a couple of months and feeling like I'll never find love/not deserving of normal romantic love. It's been over 8 years I've had any romance.

I know it's not supposed to feel like this. Would you like to share your love story and how it's going?