r/rhumatoidarthritis

I have inflammatory arthritis-possibly seroneg ra that is being treated with hcq and hyrimoz. I also have si joint arthritis which i get si joint epidural steroid injections to help with pain, and L4 & L5 severe arthritis with labral tears in both hips. I cant take nsaids bc it makes my creatine trend high. I am on 300mg gabapentin twice a day for severe muscle guarding around the sciatic nerves from the si joint. I also have hypermoble joints in my back hips knees ankles and elbows. I did a year of pt and kind of maxed out on what they can help me with, but i still do my exercises on non flare days and i try to walk a mile 3 days a week. I sleep with the pillow between knees snd ankles, i use a heating pad and ice when needed. I was an extremely active person and am still over a yr later missing my normal and coming to accept my new normal. I have days when it hurts to walk, it hurts to stand, but i need to get things done such as grocery store running errands, visiting my kids in fun cities where we do some walking for sightseeing. Any tips or tricks? To help with the walking and standing? I do have an si joint belt but i feel it makes me hurt more…. I hate being sidelined and looking for tips and tricks to be able to be mobile with the balance of resting. Currently the resting is more then the movement. Im only 48!
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I’m 18, I’ve had RA symptoms most of my life, but was only diagnosed at 15 or 16 (can’t recall exactly which it was at the moment), and I take an NSAID for pain as well as a weekly vitamin d supplement bcus I have a deficiency in that which contributes to the joint pain. Recently though I feel like my symptoms have been getting worse and I’ve been flaring more, I think possibly because of burnout being at the end of high school or honestly maybe it’s just progressing but I don’t wanna think abt that lol. But today I’m having possibly my worst flare of the year (so far, it’s only May lmao), and I just had to take an AP test while trying to tamp down a migraine and nausea and ignore my bone pains. It’s so bad that I actually had to use the handicap stall on our bathroom break (which isn’t common for me), and now I’m thinking abt how I’m gonna get through this week and then how I’m gonna get through college when I’m literally not allowed to rest. I don’t have any accommodations to let me use elevators or have extra passing period time at school (the only time I ever got any accommodation was freshman year when they said I could walk instead of run in gym and not have to do stair climbs which is the only reason I didnt fail cause for some reason they graded off of speed and endurance rather than effort), so I have to just tough it out. And then I go home and my mom makes me work out some days, others I actually do get to lay down until the next morning. But my parents are unsympathetic and refuse to acknowledge that my disability is actually disabling and think I’m just being dramatic so I know they’re gonna make me do stuff over the weekend when I should be resting to let this flare pass, and if I try to say no they’ll punish me. Ik they love me but they’re like in denial or something anyways that’s not the point.

Sorry for the kind of vent-y nature of this post, but I’d like to ask if anyone has any advice for me to get through school? Both for the last weeks of high school (which is 8am-4:20pm five days a week and my parents wouldn’t dream of letting me skip for my health) and for college once summer ends. And also for holding down a job over summer cause I don’t have much work experience so all the things I would be able to get require standing for long periods of time and lifting stuff. Pls help.

Hi. This is my first time posting here but my oral surgeon did not provide much help. Long story short, I developed Juvenile Rheumatoid Arthritis when I was 15. Throughout the decades it has gotten worse despite different medication options. One of the more severe joint deterioration has happened in my temporomandibular (think that’s the name for the jaw bone/joint). It’s been imperceptible long term but within the last 7 years or so, it’s obvious my mouth opening has gotten smaller and smaller. It’s about 22mm opening as far as I can go. To put it in perspective, I cannot get a charms blow pop lollipop in my mouth with odd angling and then it’s basically stuck until it starts shrinking.

I’ve changed dentists often and even resorted to not going for 3 years because even X-rays and cleanings are emotional. My last dentist made me feel bad every time because she couldn’t get her tools in. I met with a new dentist two weeks ago and still came out in tears. At least they weren’t mean about it. I had not been seen in 3 years like I said and only went because my second to last bottom right molar (#30) was extremely painful. Turns out I had an infection. Most likely caused by a cracked tooth. Dentist couldn’t even confirm that part because they could get proper X-rays. Got antibiotics and that went away thankfully.

They referred me to an oral surgeon who specializes in implants. He was able to remove the cracked tooth with minimal issue. But he told me none of his implant tools will fit in my mouth.

I’m devastated. The hygienist had said “wow your teeth are spotless, you take care of them,” and I know that to be true. I didn’t want to lose the tooth and I definitely don’t just want this gap I have now. All the oral surgeon would say is maybe I could find a specialist to do a bridge. He had no referrals and didn’t even seem to notice how emotional I was becoming because I feel like I’m constantly at a dead end with my teeth. No one wants to work on them.

The oral surgeon said he can facilitate a meeting with this guy he knows at UPenn who only does temporomandibular joint replacements. I’m open to the convo but am nowhere near making that sort of major decision.

What can I do now, though? I do not want a removable prosthetic. I don’t know how to find a dentist to even discuss a bridge and can’t keep trying them all. I can’t even seem to find a regular dentist who willingly wants my business. They say they do over the phone, even when I explain my very limited opening, but when I get there, everyone is clueless, even with using some pediatric tools. I feel helpless and hopeless.

I also suffer from some mental health issues (anxiety, depression, OCD) which are par for the course with having a chronic debilitating illness since 15 (I’m 45 now ). It’s only been a couple of days since the extraction but the gap there where a tooth was (and in my mind) should be is messing with my head. All I wanted was one implant and have been basically been told it’s impossible.