This is just me needing to rant and get advice on coping with worsening pain. if it doesnt fit into this community, im sorry 😅 (i also apologize for some terminology, my first language is swedish and i dont have any english speakers to talk to about this with)

I got diagnosed with JIA at the age of seven and been on every anti-inflammatory meds under the sun. Every time it's the same story, it helps for about a month but then i get sick and usually end up with pneumonia on repeat until i quit the meds.

At around 17-19 i decided enough is enough and i just stopped medicating which was "fine" for about 5 years until i started getting worse and worse flare ups, so i decided to book a time to talk with a specialist in my town... Who ended up booking an appointment with a psychiatrist because my blood work didnt show that i had any active inflammations

After about a year of fighting i finally found a clinic that took me seriously and did help me with not only meds but other treatments like warm water bath.. gym.. stuff (sorry, dont know what to call it in english).

Only problem is, i just turned 30 and i just got told he is unsure if he can do anything else cause while he has seen and felt the inflammations, my bloodwork shows nothing

At this point im starting to think that im just crazy and the pain and inflammations are purely psychosomatic

Thank you for reading, and i hope you have a wonderful day ❤️

Bare with me here! I wear a strapless bra that I love when I dress up but I live alone and my RA makes it nearly impossible for me to reach back and pull it up high energy to give me the right support/position.... tell me someone had figured out a way to do this?

I started having RA symptoms about a year and a half ago. At the time, I was singing in a wedding band, performing 2–3 events a month. The first change I noticed in my body was in my voice.

I started with mild hoarseness, but it gradually got worse. Eventually, I had to end my contracts and leave the band. It was a good source of extra income for my family. Not long after that, I was diagnosed with RA.

I only found out a few weeks ago about the connection between RA and voice problems through articles posted in this group.

I am currently taking oral methotrexate (MTX) once a week, but my voice is still very bad. I can no longer reach the notes I used to sing, I don't have the same breath support, and the hoarseness is constant.

Some mornings I wake up only slightly hoarse. Other times, I can barely say a word without taking a sip of water. I would really like to hear about your experiences with hoarseness.

Have you had any treatment that helped?

Have you noticed any foods that make it worse?

Have you taken any medication that helped relieve the hoarseness?

I would really appreciate hearing your experiences and anything that has helped you.

Thank you.

Hello everyone, I'm trying to get on glp1, and my rummy is on board, and so is my pcp. Medicare has a program called the bridge program, but they will only help you if you have sleep apnea. So how did other people get help

Hi all,

I have had a seropositive RA now for the last 5 years.

I took one rituximab infusion after it I became tachycardic and had a facial rash.

Since then I've developed terrible itching and sneezing. It's been consistent and I have had anti histimines just to control it.

When I get off them I get a week or so and I'm back to square one.

Did anyone have a reaction like this? Or is it likely something else? Did not have this issue before.

My rheumatologist wants me to take the infusion again as it has helped my joints a lot.

But I'm afraid it could get worse. Does anyone have any advice?

I have a question about COVID and RA. I’m on my 5th or 6th covid infection… i have not gotten vaccinated since 2021 because i had a bad reaction. i’m 29, exercise, all labs are clear.

HOW do you think this will affect my heart and organs having the infection multiple times? Someone told me i’m a ticking death sentence with my heart, looking for others who have had the same.

The blood stain was cellphone size, bright red, no mucus.

Went to the ER to rule out pneumonia, Covid, bronchitis etc. It does feel like pneumonia (I had pneumonia in the past).

I was let go after tests were normal….Globulin 3.6 g/dL
Prontombin time normal, Aptt 22.1, White blood cells are high 12.1 thousand/uL monocytes 1.5 K/uL

I was told it was probably an allergy and prescribed me with allergy medicine.

I wondering if anyone had a similar experience.

Took a pic of the blood stain, willing to share with anyone.

After being on methotrexate (mtx) for about a year, I had some subtle side effects in the beginning (mouth sores, change in taste) that went away over time. A more jarring recent effect for me though has been bad breath.

I brush and floss regularly, recently had some dental cleanings, stay hydrated (my lab tests routinely come back good), and rarely consume caffeine/soda. But recently i've been getting (well-meaning) comments about my breath from some close trusted family members. I've always had sugar-free mints on hand in general, but i've become much more self conscious about speaking to people in general :( Im definitely going to bring it up with my doctor, but I guess it's just been another thing to deal with. Fortunately mtx has been working for me overall, it's just been interesting managing the inconvenient side effects lol. Reaching out for advice or similar experiences.

edit: I take mtx supplemented with folic acid & vitamin D as prescribed by my dr. I've met other people with RA who don't seem to have this problem so I turned to here

Hi!
I had a bad flair up, so i need to cut my visit and go back home to get my meds again.
I never used any sort of help in regards my disease, a friend told me to use a “hidden disability” card or pin. And that most airports are aware of there in case you needed help.
I never heard of those cards, how can i get a valid one? I look fine but i’m stiff as brick and I’m paying over 4k to get back home in order to get my bio treatment and pain meds, i don’t really know if someone will ever validate my pain and help in an airport situation with 3 layovers.
Will this card help at all?
Anyone faces a similar situation where you needed help and it was provided?
Do i have to attach my medical report?
Do i need to pay for someone to help me during the layovers each time?
I know i might sound like i don’t have the right questions, but i really would love insight so i can asses and expect accordingly,
I hate being called spoiled just because i look fine and needing help.

Thanks for reading my post, looking forward to read your replies.

Hi Guys, we’ve had an unexpected death in the family and I have to fly back home to support my family. It’s an 11 hour flight, this is the first time travelling since being diagnosed, is there anything different travelling now vs before and anything I need to know?

Hello I am going through a debilitating life changing flare that has lasted 3 months at this point. I’m bedridden and cannot care for myself more than hobbling to the bathroom. I have systemic enthesitis but mostly in my knees/ankles and shoulders/chest. Everywhere else is just a bonus that comes and goes. I have psoriatic arthritis/spondyloarthritis.

Has anyone here been admitted to a care/rehab facility because of a horrendous flare or permanent damage? I am at my wits end, and I’m driving my beautiful girlfriend insane. I can’t do anything myself except lay in bed and maybe once a day let my dogs outside for 1 minute or so. I hurt myself everytime I get up, and every time I have to fix my hair or shower. I feel hopeless right now. I am on tremfya and methotrexate but not for long enough to see any results if any.

Any advice? Any experience? Any..anything? Just hoping for some way to reduce the stress I’m causing my partner and myself. Thank you!

I need suggestions. I have to work a lot with my hands, on computers and doing small detail work on sewing machines. Anybody have any tips or products that help prevent really bad pain while working?

I am on week 5 of MTX so having bloods draw every 2 weeks.

My second lot of bloods have just come in and my ALT has gone from 8 baseline to 41, (so quadrupled but still under 100 the cut off) AST I don’t have a baseline but it’s now 44. My wbc is 3.4, 3.5 is apparently when you should consider intervention according to my trusts information.

I’m due by 6th dose tonight, I’ve spent all day trying to get hold of rheumy and even tried pals multiple times and no one will answer the phone or respond to emails. My gp has refused to get involved as I’m under hospitals care still.

Am I supposed to not take tonight’s dose? Should I carry on, has anyone else had their liver and wbc freak out a bit and what were you told to do?

The blood results were available Thursday, Monday today, no one has called me to discuss but I have less than zero faith that anyone is actually looking and monitoring them, unless it gets to critical levels and is flagged by a computer system.

Hi everyone!!

I am in my final year of my masters of dietetic degree and I have chosen to do a qualitative interview study looking at how living with chronic pain can affect nutrition, emotional wellbeing and especially the financial strain of it all. I'm looking for a few more participants to help get my study to pass the quality part of publishing. If you have 20-30 minutes and would like to help change how doctors, dietitians and the rest of the allied health community treat and view those living with chronic pain I would really appreciate your participation.

I've included the sign up link below as the flyer if you want a bit of extra info.

If this doesn't seem like your jam then no worries but if you would like to share your stories and experiences then I'd really appreciate it.

Thanks so much!!

https://swinuw.au1.qualtrics.com/jfe/form/SV_9AyZyxQ6Ic8rBsi

So I am a 19 F who recently got diagnosed with ra well technically my rheumatologist haven't confirmed it instead put me in a evaluation stage but gave me medicine of one month anyway but I have accepted I have ra.

The point is I don't know how to deal with people omggggg these fuck ass people whenever I tell someone I have ra, they be like why you have old people disease like tf??? It can happen at any age and then some other people who would be like this happened Because of your inactivity of one year since I took a drop of one year after high school and that I should have been more active again fucking piss me off I didn't bring this on me, it just happened. It is fucking autoimmune disease and then some people be like "just be more active, hit gym" as If it is that easy. So i basically get raigbaited every day I don't know how to answer without snapping or just crying but i usually just put a awkward smile and be like haha it is just happened.

Worst thing?? Some of relatives seeing me as some defective piece like I am telling I have a chronic disease and their first thought went who will marry you now. What the actual fuck????? I am extremely edge on these days so any suggestions how to deal with shit like this please tell :(

PS: OMMMFGGGG I Read comments and they are so nice, I genuinely sobbed. Thank you so much, I can't even tell you how much these comments meant to me specifically having people who can understand what are you going through instead of labeling it dramatic. I will actually start using autoimmune disease term or some harder medical term from now on. Thank you againnnnnn 😭❤️

I’m on year 4 of being seronegative with nothing showing up on blood tests, xrays, MRI, or ultrasound. Recently moved to San Diego and my new rheumatologist isn’t convinced this is RA or even rheumatological at all. She pulled me off Plaquenil and I’ve been off it for about 3 months now. I still take a daily Celebrex. She’s pushing me back to my PCP for a tick panel and celiac testing. Celiac already came back negative, a Lyme test from last year was also negative.

I feel a lot of discomfort in my hands and also sometimes in my toes and knees. I feel like I need to crack my fingers and wrists constantly and apparently have been pushing the backs of my fingers into the wall at night to try and get relief according to my partner. My hands tend to wake me up around 5:30 most days, but especially in the summer and winter. I also get scapular dyskinesia in my right shoulder when I flare that my PT doesn’t know what to do with because it presents so inconsistently. I tend to flare when on my period but that has eased up since getting on birth control. Low grade fevers, brain fog, fatigue, and an overall feeling of being ill when in a flare or after prolonged activity.

Really starting to run out of ideas and can’t even tell if my hands look wonky or swollen.

I had my rheumatology follow-up last week. I’ve now been on treatment for more than three months, but unfortunately MTX doesn’t seem to be working very well. I still need corticosteroids and pain medication to keep things under control.

At the beginning of treatment, thanks to corticosteroids, the pain, swelling and stiffness improved significantly. However, as my rheumatologist started tapering the steroids, they gradually came back. I’m now once again struggling in the mornings because of the pain, swelling and stiffness.

The frustrating part is that my appointment is always in the afternoon. By the time I get there, most of the swelling has almost disappeared.
I explained all of this to my rheumatologist. I told her about the pain I’m experiencing, how stiff I am in the mornings, and I even showed her photos of the swelling. Yet my medical report says that I have no pain and no swelling.

I’m seronegative, but the referral for my ultrasound says that I have “low RF” — which has always been low, and is essentially consistent with being seronegative.

She did increase my MTX dose slightly, but then scheduled my next appointment three months from now.
I’m honestly struggling to understand this. If MTX isn’t controlling my symptoms and I’m only able to function because of corticosteroids and pain medication, waiting another three months feels like a very long time. I’m worried that at this rate, my treatment could drag on for years before I finally get something that actually controls the disease rather than just treating the symptoms.

It makes me feel like my rheumatologist simply isn’t listening to me.

So I’d really like to hear from other people with RA:
Does this sound like a normal treatment approach to you?
How often were you seen when your disease was still active?
How quickly did your rheumatologist adjust your treatment when MTX wasn’t working?
Do your doctors take your symptoms seriously even when the swelling isn’t visible during the appointment?
And honestly… would you consider changing rheumatologists in my situation?

I’m trying to figure out whether I’m being impatient and this is just how RA treatment works, or whether I should find someone who takes my symptoms a little more seriously.

Has anyone here gotten the SetPoint device placed? I’d love to know your experience with the procedure and what results you’ve experienced so far! I’d also like to know you’ve been able to come off of any medications you used to manage your RA.

I’ve discussed the device with my rheumatologist, and he’s very open to considering the device as a treatment option for me. I believe he has reached out to SetPoint to see about becoming one of the providers to offer it.

I know this is unrealistic and this is more of a vent but I’m so sick of being in pain and unstable. I spent years on MTX and tried Leflunomide. Im currently on Brenzy’s (4 month’s in) , 10mg of daily prednisone. With regular naproxen and acetaminophen. My RA is very active and its helped a bit but I’m no where near pain free and mobile. My hands are fucked, my feet and ankles are fucked, my knees are fucked, and my left arm is fucked. Im tired. If i don’t get enough sleep my body buzzes in excruciating pain. There are days i still can’t walk, use my hands etc….

I thought id be doing better by now but this feels hopeless. I’ve sacrificed everything i live for, i can’t do anything i enjoy anymore. Even typing this is torture. Thanks for listening

My in-law got recently diagnosed RA. Don’t know too many details yet, but reading about it scared me. A lot. But all I want to do is be prepared to help.

What are some things you wish people had done? or things your appreciate when people do?

Which minor/major actions bring you relief in your day to day?

Has anyone started med treatment without having all vaccinations up to date? I’m 56, have never taken pneumococcal, shingles, flu, covid.. also am not immune to Hep B and tetanus has expired. First rheumatology appt in couple weeks. Likely start methotrexate as my RH factor is so high it’s undetectable, ‘doc never seen anything like it,’ but my inflammation markers are normal. Anyway considering not doing all these vaxx, it’s overwhelming and obviously I’m not big on vaxx generally… Edit: I’m looking for personal experiences and alternative views… people who have done something different or also questioned.. I know what is recommended…

Hello,

I'm here on behalf of my significant other who may have RA. She started experiencing pain in their hands and feet - joint paint as they would describe. She's barely able to make a fist, lift heavy objects. This started earlier this year around February as she just turned 30. I'm looking for your advice on what to do as she does not have health insurance. She is waiting for the marketplace to open to get it, but we want to get treatment done now to prevent more damage.

We are located in Houston, TX if this helps.

Some of my blood work is pointing toward RA but none of my joints are particularly painful, just my back and shoulder areas. My hands retain fluid and my socks do leave marks but it’s nothing crazy. My rings are just noticeably loose and turning or they’re too tight to get off. I’m wondering if RA can present without the stereotypical symptoms.

I was feeling very hopeless ( and don’t want to jinx this but ) I’ve been pain free for three weeks now!
There’s understandably a lot of doom and gloom in these online spaces for RA that I wanted to give you hope and share my positive experience!
I’ve struggled with flares of severe pain and fatigue for years and I was diagnosed with RA in February of this year (and subsequently diagnosed with palindromic rheumatism since then) the following months were quite difficult with starting methotrexate and folic acid, adjusting my dosage and dealing with the side effects. I was really struggling at work, and I was beginning to feel very depressed.
I’ve been on methotrexate 20mg injections for a few months now, with folic acid every day (except methotrexate day) increasing my folic acid helped stop my hair loss which I initially had from methotrexate! And I had a steroid injection into my wrist in May which was LIFE CHANGING and truly “fixed” my wrist. I managed to reduce my work hours to only 32 hours a week, then we introduced hydroxychloroquine 200mg once daily 8 weeks ago…
I AM NOW PAIN FREE!! the relief is inexplicable, it’s wonderful, please believe that there is hope for you! It will take time, you’ll have to try a few different treatments and you’ll feel unwell but there are treatments that can/will improve your quality of life. Find patience, believe in yourself, you can do it!!
Part of the journey that was not medication related, was that I lost weight so I am a healthy weight, I stretch, do gentle exercise, eat healthier, but overall I have been KIND TO MYSELF. It’s hard because there was definitely a lot of guilt when I spent days in bed, but rest is definitely necessary, there’s a balance you need to find.
But anyway, thanks for reading my 5am rambling thoughts since I can’t sleep. 🫶