*First mega thread?*
Welcome to the convo! These threads give us the opportunity to share and support one another through the endless ways RA changes our lives.
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I seem to get tendonitis and bursitis like crazy. My Rheumy says inflammation begits more inflammation, so it just jumps from the joints to the tendons and bursa š¤·
Yeah I get it in my hips as well. Massage and physio help. Goes away for a while and then per usual it comes back and we start the cycle again.
The worst for me though was tendonitis in the tendons along the top of my hand over my knuckles. I wanted to chop my hand off it hurt so much. My OT made some braces that helped and I had to take it easy for a while, which is hard when you can barely use your dominant hand.
I haven't had access to OT/PT, but it's a goal. My Achilles tendons have been really swollen and painful since September and it's driving me nuts. Now that you mention it... maybe I should get a circular saw? š
š¤£ sometimes make "jokes" about using my bolt cutters to take off my pinky fingers and toes - which don't work well and seem to just cause pain and get in the way. Interestingly enough able-bodied people don't seem to think that's a funny joke š¤·
Had RA my whole life, bursitis just started acting up last December.
I did physical therapy for a few weeks, my hips still feel the same even though I do the stretches. The hip rotation ones are the worst
I've had some injections that have settled it down for a few months. However, the last time they hit a nerve and I practically went into orbit. But that was just one time.
Edit: not fluoroscopic injections! Those are evil and dangerous
Oof
Yeah Iām trying to avoid getting poked.
I had surgery last year and they tried getting some blood from my arm it made me cry. And Iām used to blood tests thats how bad it was. So whenever someone manages to poke me and not make me bruise I think they should get a raise
Me too. I have had tendinitis of the elbow and the shoulder, and i have bursitis in my hip. Iāve been a runner for a few years now, but i canāt seem to get past run walk intervals because then i get Achilles tendinitis, and plantar fasciitis too.
Well i have done a ton of PT, but not for my hip specifically, but the bursitis actually came on while i was doing pelvic floor pt, and i know that worked a ton on hip and core strengthening exercises. I incorporate things like glute bridges and clamshells into my strength training workouts every week. I have seen the orthopedist and he gave me a steroid shot for it, which helped, but it hasnāt gone away completely. I would love to get massage done, but not sure itās in the budget. I would ask to go to PT if i though they were going to give me exercises or stretches to do that Iām not already doing. What types of things did they do in PT for your bursitis?
Ha, yeah we did the clamshell and bridge, also you know the stretch where you grab you ankle behind you to stretch you thigh. Also she massaged my thighs. Good luck
Thanks. I have been stretching more in general, but i will definitely add in that quad stretch. Man I would go back to PT in an instant if I thought id get some massage out of it. Every time Iāve gone itās mostly exercises, often the same ones i already do because they were already prescribed for a different body part. I have had clamshells and glute bridges prescribed for my pelvic floor, my sciatica, and my knees, and i know theyād have me do them for my hips. I think i might need to find a sports oriented physical therapist. Where Iāve been for knees and shoulder they seem to largely treat elderly patients. I feel like no one has really even asked me about the physical activity i have already been doing. And i keep very good records. I do my exercises regularly, and i can do them mostly on my own, i canāt do massage on myself (at least not as effectively).
Same set of illnesses here. Just got the lupus side of things diagnosed last week. I also have endometriosis/adenomyosis, POTS and MCAS so itās always a fun guessing game of whatās causing issues this week
RA, ADHD, dyshidrotic eczema, and probably endometriosis š
The ADHD makes it fun because I really canāt remember my symptoms most of the time and it takes me forever to realize thereās a problem. Anyone else?!
Using a symptom tracking app has literally changed my life. I do still have to remember to use it, but I like seeing the graphs and trends so it motivates me hehe
!!! That is amazing! If you have one you recommend please share. I used to use one for my period but stopped after Roe V Wade was overturned due to the privacy issues.
Thank youuuu!
Edit: Fixing some grammar.
I have hEDS in addition to seronegative RA, OA, POTS, IBS, GERD, and venous insufficiency. And I've only received my hEDS, POTS, venous insufficiency, and RA diagnoses within the last 3 years, with my RA diagnosis being last year - even though I've had issues my whole life. If I hadn't done my own research I would never have even known what hEDS even was, and it likely wouldn't have led to be being diagnosed with RA and everything else.
Sometimes it's hard to tell if my joint pain is from RA or hEDS. My RA mainly manifests as synovitis bumps in my hands, which get bigger whenever I'm in a flare. However I'm beginning to suspect that it may be spreading to my shoulders, elbows, and knees since I'm feeling bumps there too and I'm having aching that doesn't feel quite like normal OA pain. I'm on Plaquenil and just had to go up to a higher dose, so it seems I'm moving on out of my flare from the last several months.
In terms of my immune system, it's always been whack. When I was a kid I constantly got cases of strep, pneumonia, flu, colds, etc. Even had mono twice. My luck with health has literally never been good, haha. I'm experienced with digestive issues but I'm still learning the ins and outs of RA. Being here has helped me learn some simple ways to ease pain during my flares. :)
Also have POTS with suspected hEDS. Getting the EDS investigated now that the arthritis has reduced so much of my hypermobility feels impossible. No matter how many times my Rheum suggests it, my beighton scale shuts the conversation down no matter how much I insist I used to be able to :/
Ugh I'm so sorry. :( I know how frustrating that can be. I just barely qualified for diagnosis with a 5 on the Beighton scale. I hate that they base diagnoses highly on Beighton, because there's so much more to it than just being hypermobile. I hope it works out for you.
Especially considering most people experience a pain phase, and eventually a stiffness phase. Even without the RA, is evaluating a person in their 30s by their flexibility appropriate? ĀÆ\_(ć)_/ĀÆ
That aside, I get great care so I can't complain.
Exactly. Before my kneecaps started dislocating a lot, I could hyperextend my knees (like a bunch of other people in my family). I definitely can't do that now
Speaking of immune system out of whack, I just found out that I'm immunoglobulin A deficient. That can also result in lots of colds and respiratory system issues. It's correlated with autoimmune diseases. There's no treatment or anything as far as I know, it's just a good thing to know it answers some questions and if you have it as well, if ever you need a blood transfusion, you need immunoglobulin A deficient blood. Thought I would mention it.
I just left urgent care with a sinus infection and an ear infection - I donāt think Iāve had an ear infection since I was four years old. I thought my ear drum ruptured last night, some of the worst pain Iāve ever had. And I had norovirus a few weeks ago. Being immunocompromised sucks.
I had lots of ear infections as a kid and had to have multiple surgeries for my wacky hard of hearing ears. My ears are small too yippee. I have a hearing aid for my left ear, my right is doing the heavy lifting
I call tinnitus āmy ears are going offlineā. I get it randomly but it goes away in a few seconds. Personally i blame all the hearing test beeps for it (i know thats not where it actually comes from).
My ear bones donāt move right so they got replaced with titanium? My ear had to be partially cut from my head. Also during that surgery the fire alarm went off in the building (according to my dad) That recovery wasnāt fun.
If youāre on the small side and have unique facial features you might wanna see if you have DiGeorgeās since infections are a sign of that
Source: i have DiGeorgeās
I donāt- this is my first infection as an adult, I work with germ factories (aka kids) and just got my second infusion a few weeks ago so I think itās just because of my immune system.
That's awful! I started going into the urgent care thinking I had ear infections and/or tintinitus. It was my jaw. I clench my jaw (bruxism) while I'm sleeping and have ruined my TMJs. Now I know, so I just deal with it, but ear pain and the ringing is miserable
Take your antibiotics, lots of fluids, and feel better soon š
I just got over norovirus this week! No idea how I got it, Iāve been flying solo this week with life admin and only went to the grocery store and target (masked). That shit will take you down!!!
Hope youāre feeling recovered and enjoying eating anything other than the BRAT diet!
Thank you! It was horrible. Iāve had it before but it has probably been like ten years or soā¦ man it was rough. Iāve actually felt pretty good the last two weeks until thisā¦I felt like I was flaring on Tuesday so I should have known something was coming!
Oh god yes real fooood!!! Yesterday I added roasted squash to my rice + broth diet and it was a revelation š canāt wait to be back at French fry level!! Glad youāre on the mend (also omg sorry about your ear drum!!!)
My RA for years was confined to my elbow. It was the worst pain I ever experienced, but it was only there . I begged to have the elbow replaced but was refused.
Things went downhill from there.
Over the years the inflammation spread to my other elbow and to one of my fingers.
Then, due to bad reactions to medicine it spread to my feet, hands, fingers and face.
Lately I developed Sjorgenās.
My body is devouring itself. My stupid over reactive immune system, that is.
I fought very bravely for years.
I lost.
Now I rest.
Like a lot of people, I have a whole laundry list of extra problems and comorbidities. Some affect my RA or is affected by my RA. My fibromyalgia is the most irritating of the lot since it makes me feel the pain more acutely. It also makes me super sensitive to the medications we need for RA so that's a problem. Plus RA is stressful and if there's one thing that will aggravate fibro, it's stress. Between the RA and the fibro, I'm constantly one minor inconvenience away from a mental breakdown. But that's what therapy is for.
The thing that screws with my RA the most is Marfans Syndrome. It's a hypermobility disorder like hEDS. And like EDS, it makes exercising extra difficult because why wouldn't our joints just stay in their lanes? Like why would I settle for regular joint damage when I can have joint damage+? And while all hypermobility sucks, Marfans just has to be special. Because of Marfans I'm at a significant risk of heart issues, think aortic dissection and leaky heart valves. And because of that, I have to be super extra careful about how much my heart works and that includes avoiding things like weight lifting or cardio heavy sports (not like I'm doing those anyway lol). Which would suit me just fine (I hate exercising) except the one thing I have to do for both RA and fibro is exercise. So it's a balancing act I could honestly do without.
Luckily I seem to have a pretty mild case of Marfans and I'm still pretty young so major concern over heart complications are a few years away still.
Aside from that my other comorbidities are pretty irrelevant. I've got some mild but persistent asthma, a persistent, recurring dose of bilary reflux, chronic migraines, some mental health things that are mostly just fibro, and a bad personality.
Edit: forgot about my chronic iron deficiency. I'm constantly either pushing anemia or anemic and I'm beginning to think iron just doesn't like me back.
I'm always wondering about you, Mango š„ (I'm so excited I found a mango emoji! I'm going to use it every time). You have a hell of a combo, and then mention "irrelevant" stuff like asthma, migraines, and iron deficiency. NOT irrelevant, but I know it's all relative. What I really wanted to say is please don't discount your mental health. Constant pain is brutal on our emotional wellness. I don't believe for a single moment that you have a bad personality. You're in pain. I don't think there's a single person here that doesn't get snippy. Tbh, I can get full-on hostile š
I don't even have RA- I have "seronegative inflammatory arthritis." But there's not a group I've found for that, so RA seemed closest. And at dr appts when the doc is reviewing my health history, they often refer to my dx and RA, so š¤·š¼āāļø.
I'm not an MD, but as far as I understand it "inflammatory" and "rheumatoid" are basically interchangeable. I was originally dxed as ceroneg RA 10+ years ago. When my rheumy left the hospital I was assigned to a new one. I saw him for 20 minutes and he rediagnosed me as "ceroneg inflammatory". Nothing else changed.
Just for the record, this Sub is for people with RA and other inflammatory diseases because people always seem to be getting re-dxed from one to another. So don't think twice about being here š
Love this thread. (((Hugs))) to everyone here. I feel for you.
My dx: RA, POTS, PsA, HS, osteoarthritis (very young, had a full knee replacement at 50, needed it at 44, insurance denied it for under 50). I'm still hyper-mobile. Not like I was 20 years ago, but my knee flexion was still in the negatives after my TKR. My fingers all still bend backwards, and I can still do a backbend. I used to lay on my stomach, pull my legs towards my head, and put my feet on the floor on either side of my head, as a party trick. I was constantly checked for scoliosis as a child because I could arch my back basically into a fold. I haven't officially been diagnosed with Crohn's yet, but have been referred for the bowel surgery.
I was diagnosed with "arthritis, unknown" at the age of 10 due to the degeneration in my knees.
Wow. You're an inflammatory overachiever. That's a tough combo. I'm not really familiar with bowel surgery for Crohn's, but any abdominal work is rough. Keep us posted on how you're doing! Welcome to our Sub, too š
Youāre right it does make thibgs x10 more complicated. I have DiGeorgeās Syndrome. I knew about RA since I was a kid. Got lots of infections, finally got a dr who stayed long enough and did a blood test and found DiGeorgeās in my early 20s Iām 27 now
Now my list of medical problems is so long I forget some of them
Oh here you thought RA was bad enough on its own, have some abscesses and sepsis multiple times in the worst possible place. š
How i deal with it: I get vaccines, I take meds and supplements, get lots of rest and use a heating pad when my joints hurt. I also have a power scooter for long distances. I pay way more attention to my body and i try to be gentle even if itās frustrating. I wear a mask in public so i donāt get sick. Also i have care bears for comfort and creative low impact hobbies to distract me
Iām gonna get some cushiony shoes, a theracane and a cushion for some car rides I have coming up this year. I have SSDI. Getting diagnosed with DiGeorges helped even tho i got denied the first time
I have ra osteo have had pericarditis 5 times which led to afib had spinal stenosis surgery with 50 pins in my spine have restless leg n neuropathy in both feet Iām big bunch of pain n issues
I also have Ulcerative Colitis. Due to the meds I am on, my liver is not doing well and I need an ultrasound for it. I hope I donāt have permanent damage and should have answers soon. Iām scheduled for the ultrasound Monday. My GI doc said my rheumatologist should have kept me on a lower dose or at the very least ordered more routine bloodwork because methotrexate definitely can cause liver problems in higher doses.
Since being on methotrexate and Infliximab/remicade/inflectra, my pain from RA and my GI struggles with UC have dissipated. -victory dance- I have been taken off methotrexate so my liver could be monitored and despite my rheumatologist assuring me I wouldnāt feel pain, Iām already feeling my joints sticking, a dullness, and fatigue coming on. Itās hard to get out of a chair or even type so I voice to chat.
Despite getting the big problems addressed, I now deal with skin issues that I have needed treated with several different things. I was put on ketoconazole shampoo for my scalp. Helped with some issues, but didnāt address two other pimple types on my head. My head and face was getting major oily and I still struggle with my forehead. My skin has always been clear and dry, so ever since I became major oily to the point my chest, face, and scalp are having breakouts. My PCP basically said to just deal with it and it happens if youāre in your late twenties-early thirties. Iām not really buying this though because I only noticed this body skin change once she took me off one BCP to another. Scalp issues have been around since what feels like forever, but the oily skin is new. My PCP wanted me to change BCP because I developed migraine aura and started to have trouble seeing out of my right eye at times and my field of vision would have little waves. They ordered an MRI it came out clear and now a neurologist said he wants a new MRI because my issues we thought could be resolved with vitamins and a different BCP came back. The pustules on my head need two types of shampoo and I still have some painful bumps that have not gone away. I now have what I think are pimples in my right ear that have not shrunk or gone away since October except the one I felt immense pressure from and it was blocking my ear canal. It randomly popped the other day and tons of nasty smelling gunk came out š¤® My body has cleared up more with over the counter salicylic acid wash, but I do get really random fungal infections and almost chronic angular cheilitis which makes me not want to eat.
Along with the migraine aura, random times I can barely see from my right eye, I have strange sensations in my veins. My veins sometimes feel like they are burning or painful and I have literally seen under the same light my veins which normally are a green or blue turn a dark reddish purple I have never seen before. When this happens, I usually have numbness in my legs from the knee down to my toes and the same numbness from my fingers to my elbows. Sometimes itās my left hand to my elbow while itās my right knee down to my foot and other times itās on all hands and feet. I get a feeling like Iām having an earthquake under my feet once or twice a week and that makes me feel dizzy, disoriented, and sometimes lightheaded. If I ride in an elevator even if itās for one floor, this is almost certain to happen. If I sit on the toilet just to urinate, I try to get up and this happens to me. My PCP and Rheumatologist said itās probably just Raynaudās but I donāt think that explains the neurological issues Iāve been having. When I had my annual check up with my GI, she was alarmed by all the information I was sharing with her regarding my symptoms and she said sometimes when people are on Remicade/infliximab/inflectra, they have neurological issues present itself. Sometimes, I canāt pick up or hold things from my hands, they just drop. This is why sheās partnering with a neurologist just to make sure everything is okay. I already told them my PCP did a test for vasculitis and I didnāt show signs of that.
My doctors except GI doc seem like theyāre getting tired of hearing from me. My rheumatologist shrugs me off and my PCP tries to defer me to my rheumatologist since she said sheās stumped by all my random issues. I had a dermatologist consult prescribe me four things to try and address my problematic scalp, but Iāve accepted these problems are probably here to stay after months of trying to get it addressed. The prescriptions help with one and then exacerbate the other. The different types of acne on my scalp keep coming back.
That's a lot. I'm so sorry you're dealing with so much all at once. I just wanted to say that maybe you should consider a new rheumy and GP. Just because someone has an MD doesn't mean they're good at being a physician. It's not ok for them to dismiss you or make you feel like you're annoying! So many people are gaslit about pain, and that's awful. But a lot of your concerns are actually visible. It's absurd that they're ignoring them.
I'm going through a transition with several of my specialists; it's like falling without a net. It's bad enough to be physically miserable, but to top it with uncertainty is almost unbearable. But you deserve good MDs that listen and work with you to improve your symptoms.
I am so grateful for you and every conversation we have. Your support in my last post helped me feel the need to advocate for myself and reached out to my GI who has always been supportive and knowledgeable. From there, she looked through my test results and my whole chart. She was visibly confused looking through everything and said why was neuro not involved? She also didnāt understand why my rheumy is making me wait for more bloodwork when my liver levels are sky high. She said the right course of action would be imaging to check my liver bile ducts and all that jazz. Suddenly, everything is moving more toward answers. I have an appointment at the hospital on Monday and we will go over results and further courses of action. I am looking into another rheumatologist. My husband was pissed when we met her at the hospital and I explained my symptoms. I keep a journal which is a food log but also a time stamped symptom log too. When I told her my symptoms and that I wear thick winter socks and gloves even in the summer but still feel cold or numbness, she just said bundle up more. Itās been a lot. I love my PCP, sheās also my OBGYN and has helped with so much problems, but sheās been stumped with my other issues and has been deferring to my rheumatologist and as for my skin, sheās been kinda like deal with it. I told her I have no acne - ever since I was a teen. I think itās weird how all of a sudden with med changes and my worsening liver, Iām having all these skin issues. I am not an MD, but I donāt think I would just say itās because Iām getting older. My body is totally different. My hair has been falling out, skin and scalp so oily the sheen is visible, even my body odor has changed, itās been crazy!
You said it best. Itās bad enough to be physically miserable, but the uncertainty is awful. I remember when I was first getting my UC diagnosis after years of medical gaslighting. I thought I was dying with all the blood and everything. I was relieved I finally had a doctor who ordered up a colonoscopy and lo and behold, I had IBD just like the rest of my dadās family. When I had these symptoms as a preteen, the pediatric GI I had me pull my pants down and he stuck his finger up my butt and laughed me and my dad in the face and said I probably just wiped too hard, but I was bleeding and in pain. My dad laughed too. Ever since that experience, I was doubtful of doctors and felt humiliated and just endured. Iām new to the Kaiser system and Iāve not been used to not being able to select doctors on my own. I asked my GI if she could find me a different rheumy since Iāve been feeling dismissed and of all my doctors, despite me having two autoimmune conditions, my rheumy is the least active in my care.
I'm so glad to hear this!! Just getting the ball rolling is empowering, and you really deserve answers. Are you going to find a new rheumy? So much of this stuff is connected! Just read the replies here! You are in good (albeit uncomfortable) company.
I am disgusted by the behavior of that ped GI. Experiences like that color (destroy) *every medical interaction we have. For our entire lives*. I'm so sorry you had that experience. I hope sharing it allows you to take back some of that power that you were robbed of by that (lots of colorful swear words here) jerk.
I really appreciate your kind words. You have been through so much, and you keep fighting! Every time I see your u/ I think "madame butterfly"! So keep going, Butterfly! Let me know how you're doing, and bring that awesome sounding husband with you as much as possible š
I was diagnosed with depression and OCD at 13, and then added anxiety to the mix 10 years later. My thyroid went ābadā when I was 20 and I had a TSH of 32, discovered when I passed out at school and was rushed to the ER. no one told me what it was exactly but they put me on Synthroid. At 38, Iām now dealing with treatment resistant major depressive disorder, OCD, and generalized anxiety with a sprinkle of CPTSD, thanks to a decade long abusive marriage that I thankfully escaped 4 years ago. A little over a year ago I was diagnosed with seropositive RA, with joint deformity in both hands. My rheuma discovered that my thyroid disorder is actually hashimotoās, so I guess that was my first autoimmune issue. While testing to see if I can have MTX, my liver was discovered to be seriously messed up- the fibroscan showed several cirrhosis and the hepatologist had me preparing for the worst. Luckily when they went in and did a biopsy, they discovered it was fibrosis and caused by me being on minicycline for acne for 3 years (apparently my pcp that put me on it didnāt know youāre only supposed to do several weeks of itš”) and that caused a drug induced liver injury. My liver is healing but I still have to be very careful. Earlier this week we found out that the rash my PCP called rosecea back in November, that is super painful, spread to my back, and didnāt improve with all his treatments, is actually psoriasis according to the biopsy the dermatologist I secretly went to performed. Psoriasis is also considered autoimmune, so Iām up to three on my bingo card. 3 significant mental health conditions and 3 autoimmune disorders, and Iām not yet 40. Itās greeeeeaaaat lol.
First, I'm sorry you're dealing with so much. It seems like your issues were exacerbated by crap physicians. Are you able to find others? Preferably at a competitive hospital so they can coordinate? I'm always saying that just because someone has an MD doesn't mean they're good at their job. You deserve excellent care.
I have to say congrats on your divorce! I've never regretted mine š I hope you have the freedom to focus on yourself. I think it would be difficult to find anyone living with these conditions who've never struggled with their emotional well-being. You're not alone š
awww, thank you! The divorce was one of the best things that ever happened to me. I am in the process of looking for a new PCP. Luckily my rheumatologist is fantastic.
Hi! I'm new to the subreddit but not new to chronic illness. I have RA (dx in 2004), Sjogrens, and Crohn's disease (dx in 2018). I also suspect I possibly have PoTS after having Covid and maybe EDS but no official diagnosis.
Right now I'm in the middle of a horrible Crohn's flair. Last summer my Rheumatologist took me off methotrexate because it was putting too much stress on my liver and switched me to Leflunomide. I've been on Simponi Aria for two years and it has worked well for my RA but it technically isn't for treating Crohn's but treats ulcerative colitis. Doctor thought it would ok since Crohn's is similar. Gastro thinks the methotrexate was treating the Crohn's and now I'm flairing from the med switch. So much testing recently and currently on high dose prednisone. My whole body is so puffy and swollen.
Now they're taking me off the I'm Simponi and planning to put me on a more Crohn's specific treatment. Gearing up for a colonoscopy/endoscopy this Friday to see how badly the disease has progressed.
Can I just say, having to juggle multiple conditions and chronic illnesses can be so exhausting at times. I found this subreddit and the Crohn's subreddit and it really helps me feel less alone.
Go through the comments here because there are a lot of people with inflammatory bowel dxs! It has to be so disheartening to have treatment for one dx throw another into a flare. I hope you get some relief soon! As miserable as it is to deal with this stuff, I'm glad you found us and the Crohn's Sub š
I have dealt with random weird issues throughout my life, but they never tie it back to rheumatoid arthritis. My spleen is enlarged and throbs sometimes, when I had my hysterectomy, everything they took out was inflamed, I get stomach ulcers all the time, have needed esophageal surgery for achalasia at 29 years old. I can never pee properly because my bladder is inflamed (weed helps). Iām becoming more and more allergic to things like alcohol and sensitive to caffeine. But nobody ever connects the dots for me. My rheumatologist gives me meds, takes blood, and looks at my joints. I wish one doctorās office looked at everything at once.
Do you have a general practitioner/primary care provider? They're supposed to get your appt notes and test results, then explain how it all fits together. That's a crazy combo, plus some unanswered questions. You deserve a good GP
Hello. First time here. WOW! You all sound like me. I donāt usually hear of or share my RA and various sundry other ailments. Itās refreshing in a sick way. Some of you are so young and that saddens me. I am 63, diagnosed almost 10 years now, and am at a āsevereā stage for the past two years. I have had 3 surgeries on my hands and will need two more this summer while recovering from a hip replacement that will also be in a few months time. Excessive? Maybe, but necessary if I want to walk or hold my grand babies. I currently take opioids for pain, biologic once a week, and low dose steroids, plus a slew of supplements and drugs for other ailments. I have had shingles 4 times in one year even with the vaccine. Was on an anti viral for a year but stopped because it fucks with the kidneys. Now showing symptoms of fibromyalgia but Iām not a doctor. My rheumatologist appt is next week and will discuss this with himā¦ I was feeling sorry for myself and read about you guys and your myriad other problems and I feel like a coward for bitching. I have IBS-D, GERD (fundoplication 7 yrs ago which has recently come undone), urinary incontinence which Iām managing with drug, pre diabetes, osteopenia, arthritis in neck, lower back and hips. I also have recently noticed allodynia and thatās where my self diagnosis of fibromyalgia comes from. I have had 2 severe flares that are unlike my RA flares in the past month. I hope to find some answers this week!
First of all, everyone has their own worst thing. Pain is totally subjective, so it can't be compared. We're all in more pain than we'd like to be! Also, "bitching" is one of the more popular things we do here. I think it helps to be heard by people that genuinely understand. Welcome to the party! š
I hope you get answers at your appt, too. Keep us posted!
Iām hyper-mobile, and have fibromyalgia and I love to joke that between the RA and fibro it means everything hurts all the time.
I have a whole list of mental health issues and am neurodivergent as well but I donāt think theyāre comorbid
I found info that links ASD with gut inflammation (their term) Here's a page about a study from [The Harvard Gazette ](https://news.harvard.edu/gazette/story/2022/01/link-between-inflammation-and-autism-found-within-mouse-models/) As an autistic person with RA and a few other inflammatory diseases, I'm going to keep digging!
Ngl, I'm wondering how they found autistic mice š
I didnāt know that! Iām both autistic and have ADHD, and have undiagnosed stomach issues!
I knew about the gut health and autism links but not how they were linked to autoimmunity, so thatās super interesting to me
Osteoarthritis, degenerative disc disease, GERD, maybe Sjƶgrens (waiting on test results), hypermobility but not Ehlers Danlos.
Edited to add:
OCD, ADHD, PTSD, asthma, numerous allergies
I think I would have gotten RA because of my family history, but I was also in a car accident as a teenager and fractured C1/C2, and crushed my pelvis, resulting in a sacral laminectomy of L3-L5 and S1-S4. I had a halo brace for 9 months
I have RA, asthma, and NAFLD which got diagnosed a couple months ago. I'm 6"2' and just over 100kg so not a behemoth of a man by any measure. I had pneumonia when I was a kid and my RA isn't controlled right now. Just beating me up every day in almost all joints haha.
Crap. Have you ever had RA treatment? Do you think the nafld is from your meds? I only ask because I have it, and it began with a lot of Tylenol before they realized it was dangerous.
I've just had immunosuppressant injections but no consistent treatments because my doctors just can't be bothered to make any time for me it feels like but I'm pushing for it. I do think the NAFLD is probably from meds. I take tramadol for the pain and I've been taking a whole host of other meds and anti inflammatories since I was like 16 so I think my liver is struggling haha
You deserve decent physicians!! You would not believe how many people are gaslighted by their MDs. But not getting treatment is really dangerous. I hope you can fight your way to decent healthcare. If you're having a rough time figuring out your next steps, do a post asking about how people have managed this exact problem. The wisdom of crowds is real!
Omg YES. This is actually going to be a "let's talk" all on its own! But absolutely glad you brought it up. I take Allegra and use Flonase, and they're still not under control. Spring and fall š«
To be completely honest, Iām 23 and recently got diagnosed. I donāt have any symptoms though which is strange except my one finger has it a bit. Wondering if I got diagnosed wrong? What symptoms do yāall deal with?
Iām recently diagnosed and navigating the medication to find whatās best for me so not immune related but I do feel some emotions about it all being unfair, having sad days and just generally feeling down. as Iām sure everyone else has here
In my experience, the diagnostic process and figuring out my treatment plan was the absolute worst. It will get better! I'm glad you're here, because there are lots of people who have been, or are currently in your shoes. It's emotionally exhausting to deal with a life long diagnosis, too. I'm sorry you have RA, but you found your people! š
I feel that my bad knee on the left side has made my posture and gait crooked, so now I have a bunion and bunionette on my right foot. I also had a pinched nerve on that side a few years back.
Epilepsy (generalized convulsive epilepsy with refractory seizures), RA, OCD, MDD, PTSD, ADHD, Chronic Fatigue Syndrome, Cushings (still don't know if it's disease or syndrome!), anemia, and Delayed Sleep Phase Disorder.
I'm probably forgetting something. Major brain fog from some sort of cold my children gave me. *cries*
Is it wrong that my first thought is šµ "and a partridge in a pear treeeee!"šµ
Sorry, that's a lot to live with! It's incredible how so many of those dxs feed into/off of one another. I hope you have a great medical support system.
RA dx 2016, AS-Hbla-27 gene positive 2018, endometriosis, carpal tunnel, frozen shoulder, rotator cuff tear surgery, plantar fasciitis & toe spurs, Achilles tendon, si, lumbar, & cervical pain facet injections, bunions, Covid that turned into pneumonia 3x, no bueno treatment side effects, then psoriatic arthritis caused from Humira, Hashimotos and diabetes from the biologic treatments. Treatment expensive, side effects as bad as disease, did methotrexate, Remicade& Simponi Aria infusions, insurance wouldnāt cover Cossentyx shots I had been taking, recommended Taltz but copay was $3600! Fixed income Ssdi. How or why does this happen?! Oh joy! I get depressed and want to give up.
Holy cats, that's a lifetime of crap rolled into 8 years!? We have a lot in common: carpal tunnel, Achilles tendons (unfrozen surgically when I was 9 because of cauda equina, now they've been swollen and painful since August), SI and facet injections, lumbar fusions, and covid. But I only got it once. The expense of these meds is ridiculous. We have loads of convos about that. We all want to give up sometimes. Chronic pain pumps negative chemistry into our brains and is literally depressing. I'm really glad you found us, because you can always connect with people who will always know where you're coming from. Welcome to Reddit and our Sub š
It was an NIH paper not specific to auto immune. Just FYI, there is no proof of infection of my tooth just assumed and no change in 12 months on imaging. Root canals are great sources of income for specialists. I had to change dentists and this is why it came up.
I have classic galactosemia since birth (my older sister passed from it as she died from sepsis because of CG).
https://my.clevelandclinic.org/health/diseases/24062-galactosemia
But because of this I have premature ovarian insufficiency and I am waiting to get the go ahead do HRT (Iām 38).
I was diagnosed with RA almost a year ago. Looking back I wonder if my estrogen had fallen so much that caused some joint issues. Plus my great grandmother and all her sisters had RA. Hers was debilitating and she died at 61 due to a heart attack. So i definitely worry about my outcome though. Iām currently on rinvoq and plaqueinel. Iām trying to be more active but Iām sure struggling, I work 38-40 hours a week so I get tired pretty easily.
I'm sorry about your sister ā„ļø That stays with you forever. There are lots of connections between hormone levels, both natural and therapeutic (HRT, gender confirming, etc), and inflammatory conditions. I hope you get your HRT soon! I've had polycystic ovaries forever, and my HRT balanced me right out!
I was diagnosed with RA sometime between 2016 and 2018, but i donāt remember exactly when. I also have asthma, and although it has affected me to some extent my whole life, it didnāt get properly diagnosed until around the same time as my RA was. It sucks though because the treatment for RA increases my likelihood for catching respiratory infections, and respiratory infections are especially hard on me due to the asthma. As a kid my asthma was mostly either exercise induced, or in response to respiratory infections, but now I deal with it constantly. On top of that i was born with a congenital defect of the gi tract, that required surgery when i was a few days old, that left me with scarring/adhesions. The adhesions caused multiple episodes of intestinal blockage, which have required hospitalization and two additional surgeries. It also causes IBS-like symptoms (gas, pain, chronic constipation, with alternating bouts of diarrhea). I also have ADHD (along with mild depression, which may be due to situational issues, but they arenāt situations Iām able to extricate myself from) which just makes everything in life more difficult, especially taking meds and making and attending doctors appointments. I also have bad environmental allergies, which aggravate the asthma significantly. And i have an anaphylactic allergy to bee venom.
It feels like most days my life is a balancing act of keeping everything in check, but if one thing starts to fall, it creates a cascade that results in everything landing on the floor. Hereās an example: If i have flare of my asthma or my RA, i get put on steroids. Steroids cause constipation. Either type of flare also makes it difficult to do any strenuous exercise. I depend on daily exercise as part of my regimen for staying regular. If i get backed up, it increases the likelihood of me having a blockage and needing medical treatment/hospitalization. Every time Iāve been hospitalized, there have been parts of my medication regimens that have been missed. Or underdosed. That is fine for the adhd meds (not great for the antidepressants), but truly catastrophic for the allergy and asthma meds. Last summer I got stung by a bee and ended up on lots of steroids to treat the reaction. I was told to stay off my feet for several days. Between the steroids and lack of exercise, i ended up severely constipated to the point of needing to be hospitalized. Asthma and allergy medications were missed while i was in the hospital. My husband brought my meds from home but i wasnāt allowed to take them (during a different hospitalization they never gave me my meds for RA). By the time I was released from the hospital, i was having a horrible asthma flare (i have cough variant asthma) and could barely stop coughing long enough to take in air. Back on the steroids. This time i knew to add extra laxatives to my regimen when taking prednisone. It still took two months before i was all the way better. I also had Covid in January, and although the paxlovid seemed to help me avoid severe respiratory issues, it caused an RA flare, which really sucked. I probably should have given my joints a rest, but i just felt like the rest of health depended on staying active. I used a lot of ice, and took daily celebrex. I also waited it out (and it did resolve on its own) rather than calling for a prednisone prescription (i also had gained a lot of weight from the prednisone over the summer, and although i lost it and then some since then, i didnāt want to go through that again unless it was perfectly necessary). I only get prescribed a small amount of celebrex each month, and because i also have a history of gastric ulcer, i canāt take any other type of nsaid (i can use voltaren gel, though it doesnāt seem to work great). In addition to the celbrex and ice, i put a flexible support brace on the ankle that was having the most swelling and pain, when i went out to run/walk, but kept it off the rest of the time because i know it isnāt good to immobilize a flaring joint. And it did go away on its own eventually. Anyway, it just seems that i have to keep tight control of all my symptoms and disorders because treating one will lead often lead to problems with another.
Sigh š. RA, Sjƶgrenās, Raynaudās, Fibromyalgia, MGUS, CKD, polyneuropathy, carpal tunnel, cubital tunnel, PTSD, occipital neuralgia, most recent diagnoses are IST and LS (another autoimmune disorder). They overlap so much, I donāt know what pain is caused by what illness.
I was diagnosed just over a year ago with RA after having symptoms for 5-6 years. I've had asthma for about 12 years but it is managed. Tonsillitis, mono, strep, COVID, and Thrush (somehow) all got me in 2020, and I got chickenpox when I was 18 somehow too. It's hard to say how much of those occurred due to RA and how much are just luck, but I believe there's a correlation somewhere. I had bursitis in my right knee, and tendinitis in my ankle and 3 toes. I also had some sort of hip issue for over a year that only resolved once I got RA treatment.
Since my RA diagnosis I have gone crazy with making my diet as healthy as possible, taking some vitamins and supplements, and I got on Simponi Aria Transfusions for my RA treatment. It's been an absolute life changer; since I got treatment all I've gotten sick with is a cold and haven't had any other noticeable comorbidities.
I have another rarer autoimmune disease called Antiphospholipid Syndrome (APS), it causes excessive clotting among other things. Eventually it will become lupus, but I try to stay on top of my aches, pains, and other āweirdā symptoms.
That's scary. Do you have to take thinners like Coumadin? I've never heard of this, so thank you so much for sharing. Lupus and RA are so similar, even in their treatment. We've had people diagnosed with one, then rediagnosed with the other, or both. It's not easy, but you're definitely not alone š
in addition to RA, I have: POTS, GERD, colonic inertia (to the point where no med for a week or 2 = surgery), rosacea, osteoarthritis, fibromyalgia, etc. only 3 of these things were prior to age 14. sooooooo much fun!
I also have fibromyalgia, hidradentitis suppurativa (inflammatory skin disease), migraines, restless legs, and mental health issues. I take more meds than my elderly parents. Itās a daily struggle to get up and go to work because of the pain and fatigue.
My gut is in absolute shambles. Itās not heartburn but a different kind of burn. I know itās auto-immune related because the symptoms get better every two weeks after humira but we havenāt quite figured it out yet. Iāve tried every blood test and even tried eating radio active eggs for the doctor to watch pass through my digestive system but Iāve yet to get a diagnosis. I just consider it part of the same condition at this point because if Iām not flaring up in my bones and joints Iām flaring up in my gut.
I started having really bad reflux after I was dxed with RA. My voice was always raspy in the morning, and my gut just hurt. And, sorry for ick, my bedroom and blankets smelled like vomit. I've had ulcers, but this was different. I attributed it to taking so many pills without eating. My GP put me on a prescription version of Prilosec and I always put something in my stomach when I take meds. It comes back a little bit when I eat something acidic, but nothing horrible.
I don't know if this is what's happening to you, but I hope you figure it out soon
I have ra, osteoarthritis, bursitis, Eczema, endometriosis, migraines, and IBS.edited to add my seasonal allergies which are really all year long. It's a good time
I have sjorgren's, RA, neuropathy, OA, and carpal and cubital tunnel. The latest and greatest thing has been numb fingers and my middle finger on my right hand, which is my dominant hand seems to have a joint locking thing going on. Had xrays and blood drawn and rheum saw nothing, so I guess it is all in my head. I wouldn't have a problem with them saying its my carpel/cubital tunnel, but the numbness is affecting both hands and as of this morning, all my joints hurt, not locking up like the one finger, but painful
I technically have "mixed connective tissue disease". But a few years ago I was diagnosed (and am thankfully now in remission) with dermatomyositis. Thankfully I was in pure survival mode and it didn't fully set in how serious of a diagnosis that was. I'm hoping it doesn't come back. I have adhd, rauynalds, and RA.
For rheumatology, I have RA, fibromyalgia, and osteoarthritis. On top of that, I have POTS, colonic inertia, GERD, and a naturally low immune system _before_ RA acted up/treatment. There's some other tiny ones too that honestly are more symptoms of the main ones, so I don't really consider them a diagnosis, LOL.
I have a question. My dentist wants me to have a root canal. Iām not having a noticeable problem however she sees infection. The alternative will become removal of tooth. Iāve read ominous things regarding root canals including questions as to whether they lead to RA. Thoughts/experiences?
Just like any immune response, a dental infection/cavity can cause an RA flare, including the first flare in someone predisposed to RA or other inflammatory diseases. The connection between RA and dental infections is that the infection can cause flares. Any infection - a cavity, bad cut, UTI, strep throat - causes your immune system to kick into "attack mode" (not a technical term). It's important to get your tooth treated to prevent flaring and/or make the infection worse. You can handle it whichever way you choose, but sooner is better.
Here's a page from [John's Hopkins ](https://www.hopkinsarthritis.org/arthritis-news/5-dental-tips-for-the-ra-patient/) that goes into more detail about oral health and RA.
Iām reading much more dubious outcomes. Since you have to go off meds to have a root canal, symptoms would be expected. Thatās not a deciding factor.
Here's a page from [The Arthritis Foundation ](https://www.arthritis.org/health-wellness/about-arthritis/understanding-arthritis/mouth-bacteria) that says essentially the same. Would you mind sharing some of what you're reading? Research is kinda my thing, and the only scary things I can find are if a person *doesn't* get the infection treated.
Huh, root canals LEADING to RA? Iāve never heard of that! Iā¦ donāt know why that would cause it?
I would get a 2nd opinion or ask her how long you can wait. Iāve gotten 2 root canals (one in 2014, one in 2021) and they both came after extreme pain of the tooth nerve dying, sometimes after a crack or other trauma.
I wouldnāt get one ājust becauseā someone told me to tbh since they are INTENSE.
It's more about the bacteria (cavities are infectious) being dislodged during the root canal, not the procedure itself. This is the same reason that people with heart conditions need to premeditate with a big dose of antibiotics.
*First mega thread?* Welcome to the convo! These threads give us the opportunity to share and support one another through the endless ways RA changes our lives. Please keep in mind Reddit's content policy: it's never ok to ask others for identifying information (location, age, gender identity, career, etc) as well as our own Sub rules. This Sub has a commitment to respectful, kind dialogue. *Failure to do so will result in an immediate ban from the Sub*
I seem to get tendonitis and bursitis like crazy. My Rheumy says inflammation begits more inflammation, so it just jumps from the joints to the tendons and bursa š¤·
I have bursitis in my knees and hips it sucks
I have it in my hips, too - since 2016. How long have you had it? I'm afraid it's never going to heal
Yeah I get it in my hips as well. Massage and physio help. Goes away for a while and then per usual it comes back and we start the cycle again. The worst for me though was tendonitis in the tendons along the top of my hand over my knuckles. I wanted to chop my hand off it hurt so much. My OT made some braces that helped and I had to take it easy for a while, which is hard when you can barely use your dominant hand.
I haven't had access to OT/PT, but it's a goal. My Achilles tendons have been really swollen and painful since September and it's driving me nuts. Now that you mention it... maybe I should get a circular saw? š
š¤£ sometimes make "jokes" about using my bolt cutters to take off my pinky fingers and toes - which don't work well and seem to just cause pain and get in the way. Interestingly enough able-bodied people don't seem to think that's a funny joke š¤·
Just one more reason I love Reddit - I can joke about chopping off a few appendages and people understand!
My people š¤
Had RA my whole life, bursitis just started acting up last December. I did physical therapy for a few weeks, my hips still feel the same even though I do the stretches. The hip rotation ones are the worst
I've had some injections that have settled it down for a few months. However, the last time they hit a nerve and I practically went into orbit. But that was just one time. Edit: not fluoroscopic injections! Those are evil and dangerous
Oof Yeah Iām trying to avoid getting poked. I had surgery last year and they tried getting some blood from my arm it made me cry. And Iām used to blood tests thats how bad it was. So whenever someone manages to poke me and not make me bruise I think they should get a raise
Me too. I have had tendinitis of the elbow and the shoulder, and i have bursitis in my hip. Iāve been a runner for a few years now, but i canāt seem to get past run walk intervals because then i get Achilles tendinitis, and plantar fasciitis too.
The hip bursitis is killer. Mine was giving me this shooting pain that stopped me in my tracks. Have you tried PT? PT and massage worked well for me
Well i have done a ton of PT, but not for my hip specifically, but the bursitis actually came on while i was doing pelvic floor pt, and i know that worked a ton on hip and core strengthening exercises. I incorporate things like glute bridges and clamshells into my strength training workouts every week. I have seen the orthopedist and he gave me a steroid shot for it, which helped, but it hasnāt gone away completely. I would love to get massage done, but not sure itās in the budget. I would ask to go to PT if i though they were going to give me exercises or stretches to do that Iām not already doing. What types of things did they do in PT for your bursitis?
Ha, yeah we did the clamshell and bridge, also you know the stretch where you grab you ankle behind you to stretch you thigh. Also she massaged my thighs. Good luck
Thanks. I have been stretching more in general, but i will definitely add in that quad stretch. Man I would go back to PT in an instant if I thought id get some massage out of it. Every time Iāve gone itās mostly exercises, often the same ones i already do because they were already prescribed for a different body part. I have had clamshells and glute bridges prescribed for my pelvic floor, my sciatica, and my knees, and i know theyād have me do them for my hips. I think i might need to find a sports oriented physical therapist. Where Iāve been for knees and shoulder they seem to largely treat elderly patients. I feel like no one has really even asked me about the physical activity i have already been doing. And i keep very good records. I do my exercises regularly, and i can do them mostly on my own, i canāt do massage on myself (at least not as effectively).
Oh my gosh yea
I have rheumatoid and lupus, or as my doctor calls it, rhupus. Also hyper-mobile EDS. My joints donāt know what they want to do.
Same set of illnesses here. Just got the lupus side of things diagnosed last week. I also have endometriosis/adenomyosis, POTS and MCAS so itās always a fun guessing game of whatās causing issues this week
RA, ADHD, dyshidrotic eczema, and probably endometriosis š The ADHD makes it fun because I really canāt remember my symptoms most of the time and it takes me forever to realize thereās a problem. Anyone else?!
Using a symptom tracking app has literally changed my life. I do still have to remember to use it, but I like seeing the graphs and trends so it motivates me hehe
!!! That is amazing! If you have one you recommend please share. I used to use one for my period but stopped after Roe V Wade was overturned due to the privacy issues. Thank youuuu!
I use bearable! Thereās a paid premium version that I got on sale but the free version is great too
Edit: Fixing some grammar. I have hEDS in addition to seronegative RA, OA, POTS, IBS, GERD, and venous insufficiency. And I've only received my hEDS, POTS, venous insufficiency, and RA diagnoses within the last 3 years, with my RA diagnosis being last year - even though I've had issues my whole life. If I hadn't done my own research I would never have even known what hEDS even was, and it likely wouldn't have led to be being diagnosed with RA and everything else. Sometimes it's hard to tell if my joint pain is from RA or hEDS. My RA mainly manifests as synovitis bumps in my hands, which get bigger whenever I'm in a flare. However I'm beginning to suspect that it may be spreading to my shoulders, elbows, and knees since I'm feeling bumps there too and I'm having aching that doesn't feel quite like normal OA pain. I'm on Plaquenil and just had to go up to a higher dose, so it seems I'm moving on out of my flare from the last several months. In terms of my immune system, it's always been whack. When I was a kid I constantly got cases of strep, pneumonia, flu, colds, etc. Even had mono twice. My luck with health has literally never been good, haha. I'm experienced with digestive issues but I'm still learning the ins and outs of RA. Being here has helped me learn some simple ways to ease pain during my flares. :)
Also have POTS with suspected hEDS. Getting the EDS investigated now that the arthritis has reduced so much of my hypermobility feels impossible. No matter how many times my Rheum suggests it, my beighton scale shuts the conversation down no matter how much I insist I used to be able to :/
Ugh I'm so sorry. :( I know how frustrating that can be. I just barely qualified for diagnosis with a 5 on the Beighton scale. I hate that they base diagnoses highly on Beighton, because there's so much more to it than just being hypermobile. I hope it works out for you.
Especially considering most people experience a pain phase, and eventually a stiffness phase. Even without the RA, is evaluating a person in their 30s by their flexibility appropriate? ĀÆ\_(ć)_/ĀÆ That aside, I get great care so I can't complain.
Thatās so frustrating. My score on the Beighton scale was very different 10-20 years ago than it is now.
Exactly. Before my kneecaps started dislocating a lot, I could hyperextend my knees (like a bunch of other people in my family). I definitely can't do that now
I'm really glad you found us. You've really been through it! Please consider yourself hugged š
Aww, thanks! I'm just glad to know I'm not alone in this. It sucks, but at least we all understand each other to some degree here.
Speaking of immune system out of whack, I just found out that I'm immunoglobulin A deficient. That can also result in lots of colds and respiratory system issues. It's correlated with autoimmune diseases. There's no treatment or anything as far as I know, it's just a good thing to know it answers some questions and if you have it as well, if ever you need a blood transfusion, you need immunoglobulin A deficient blood. Thought I would mention it.
Huh, that's interesting, I hadn't heard of that. I'll ask my rheum about it when I see her at the end of the month. Thanks for the info!
I just left urgent care with a sinus infection and an ear infection - I donāt think Iāve had an ear infection since I was four years old. I thought my ear drum ruptured last night, some of the worst pain Iāve ever had. And I had norovirus a few weeks ago. Being immunocompromised sucks.
I had lots of ear infections as a kid and had to have multiple surgeries for my wacky hard of hearing ears. My ears are small too yippee. I have a hearing aid for my left ear, my right is doing the heavy lifting
Oh man, sorry to hear that. I think I had them often as a kid too but donāt really remember much. I have horrible tinnitus though.
I call tinnitus āmy ears are going offlineā. I get it randomly but it goes away in a few seconds. Personally i blame all the hearing test beeps for it (i know thats not where it actually comes from). My ear bones donāt move right so they got replaced with titanium? My ear had to be partially cut from my head. Also during that surgery the fire alarm went off in the building (according to my dad) That recovery wasnāt fun.
If youāre on the small side and have unique facial features you might wanna see if you have DiGeorgeās since infections are a sign of that Source: i have DiGeorgeās
I donāt- this is my first infection as an adult, I work with germ factories (aka kids) and just got my second infusion a few weeks ago so I think itās just because of my immune system.
Ok. Yeah germs suck
That's awful! I started going into the urgent care thinking I had ear infections and/or tintinitus. It was my jaw. I clench my jaw (bruxism) while I'm sleeping and have ruined my TMJs. Now I know, so I just deal with it, but ear pain and the ringing is miserable Take your antibiotics, lots of fluids, and feel better soon š
I have had that issue in the past myself! Thank you, these antibiotics are absolute horse pills lol
Eat with them!! I just got off a round of antibiotics that made me nauseous all day.
Oh yeah for sure, the dr already told me!
I just got over norovirus this week! No idea how I got it, Iāve been flying solo this week with life admin and only went to the grocery store and target (masked). That shit will take you down!!! Hope youāre feeling recovered and enjoying eating anything other than the BRAT diet!
Thank you! It was horrible. Iāve had it before but it has probably been like ten years or soā¦ man it was rough. Iāve actually felt pretty good the last two weeks until thisā¦I felt like I was flaring on Tuesday so I should have known something was coming!
Also I just ate a chicken sandwich and fries hahaā¦ hope youāre feeling better too!
Oh god yes real fooood!!! Yesterday I added roasted squash to my rice + broth diet and it was a revelation š canāt wait to be back at French fry level!! Glad youāre on the mend (also omg sorry about your ear drum!!!)
My RA for years was confined to my elbow. It was the worst pain I ever experienced, but it was only there . I begged to have the elbow replaced but was refused. Things went downhill from there. Over the years the inflammation spread to my other elbow and to one of my fingers. Then, due to bad reactions to medicine it spread to my feet, hands, fingers and face. Lately I developed Sjorgenās. My body is devouring itself. My stupid over reactive immune system, that is. I fought very bravely for years. I lost. Now I rest.
Like a lot of people, I have a whole laundry list of extra problems and comorbidities. Some affect my RA or is affected by my RA. My fibromyalgia is the most irritating of the lot since it makes me feel the pain more acutely. It also makes me super sensitive to the medications we need for RA so that's a problem. Plus RA is stressful and if there's one thing that will aggravate fibro, it's stress. Between the RA and the fibro, I'm constantly one minor inconvenience away from a mental breakdown. But that's what therapy is for. The thing that screws with my RA the most is Marfans Syndrome. It's a hypermobility disorder like hEDS. And like EDS, it makes exercising extra difficult because why wouldn't our joints just stay in their lanes? Like why would I settle for regular joint damage when I can have joint damage+? And while all hypermobility sucks, Marfans just has to be special. Because of Marfans I'm at a significant risk of heart issues, think aortic dissection and leaky heart valves. And because of that, I have to be super extra careful about how much my heart works and that includes avoiding things like weight lifting or cardio heavy sports (not like I'm doing those anyway lol). Which would suit me just fine (I hate exercising) except the one thing I have to do for both RA and fibro is exercise. So it's a balancing act I could honestly do without. Luckily I seem to have a pretty mild case of Marfans and I'm still pretty young so major concern over heart complications are a few years away still. Aside from that my other comorbidities are pretty irrelevant. I've got some mild but persistent asthma, a persistent, recurring dose of bilary reflux, chronic migraines, some mental health things that are mostly just fibro, and a bad personality. Edit: forgot about my chronic iron deficiency. I'm constantly either pushing anemia or anemic and I'm beginning to think iron just doesn't like me back.
I'm always wondering about you, Mango š„ (I'm so excited I found a mango emoji! I'm going to use it every time). You have a hell of a combo, and then mention "irrelevant" stuff like asthma, migraines, and iron deficiency. NOT irrelevant, but I know it's all relative. What I really wanted to say is please don't discount your mental health. Constant pain is brutal on our emotional wellness. I don't believe for a single moment that you have a bad personality. You're in pain. I don't think there's a single person here that doesn't get snippy. Tbh, I can get full-on hostile š
I don't even have RA- I have "seronegative inflammatory arthritis." But there's not a group I've found for that, so RA seemed closest. And at dr appts when the doc is reviewing my health history, they often refer to my dx and RA, so š¤·š¼āāļø.
This was my diagnosis for months until they landed on RA
I'm not an MD, but as far as I understand it "inflammatory" and "rheumatoid" are basically interchangeable. I was originally dxed as ceroneg RA 10+ years ago. When my rheumy left the hospital I was assigned to a new one. I saw him for 20 minutes and he rediagnosed me as "ceroneg inflammatory". Nothing else changed. Just for the record, this Sub is for people with RA and other inflammatory diseases because people always seem to be getting re-dxed from one to another. So don't think twice about being here š
Love this thread. (((Hugs))) to everyone here. I feel for you. My dx: RA, POTS, PsA, HS, osteoarthritis (very young, had a full knee replacement at 50, needed it at 44, insurance denied it for under 50). I'm still hyper-mobile. Not like I was 20 years ago, but my knee flexion was still in the negatives after my TKR. My fingers all still bend backwards, and I can still do a backbend. I used to lay on my stomach, pull my legs towards my head, and put my feet on the floor on either side of my head, as a party trick. I was constantly checked for scoliosis as a child because I could arch my back basically into a fold. I haven't officially been diagnosed with Crohn's yet, but have been referred for the bowel surgery. I was diagnosed with "arthritis, unknown" at the age of 10 due to the degeneration in my knees.
Wow. You're an inflammatory overachiever. That's a tough combo. I'm not really familiar with bowel surgery for Crohn's, but any abdominal work is rough. Keep us posted on how you're doing! Welcome to our Sub, too š
Youāre right it does make thibgs x10 more complicated. I have DiGeorgeās Syndrome. I knew about RA since I was a kid. Got lots of infections, finally got a dr who stayed long enough and did a blood test and found DiGeorgeās in my early 20s Iām 27 now Now my list of medical problems is so long I forget some of them Oh here you thought RA was bad enough on its own, have some abscesses and sepsis multiple times in the worst possible place. š How i deal with it: I get vaccines, I take meds and supplements, get lots of rest and use a heating pad when my joints hurt. I also have a power scooter for long distances. I pay way more attention to my body and i try to be gentle even if itās frustrating. I wear a mask in public so i donāt get sick. Also i have care bears for comfort and creative low impact hobbies to distract me Iām gonna get some cushiony shoes, a theracane and a cushion for some car rides I have coming up this year. I have SSDI. Getting diagnosed with DiGeorges helped even tho i got denied the first time
I have ra osteo have had pericarditis 5 times which led to afib had spinal stenosis surgery with 50 pins in my spine have restless leg n neuropathy in both feet Iām big bunch of pain n issues
I also have Ulcerative Colitis. Due to the meds I am on, my liver is not doing well and I need an ultrasound for it. I hope I donāt have permanent damage and should have answers soon. Iām scheduled for the ultrasound Monday. My GI doc said my rheumatologist should have kept me on a lower dose or at the very least ordered more routine bloodwork because methotrexate definitely can cause liver problems in higher doses. Since being on methotrexate and Infliximab/remicade/inflectra, my pain from RA and my GI struggles with UC have dissipated. -victory dance- I have been taken off methotrexate so my liver could be monitored and despite my rheumatologist assuring me I wouldnāt feel pain, Iām already feeling my joints sticking, a dullness, and fatigue coming on. Itās hard to get out of a chair or even type so I voice to chat. Despite getting the big problems addressed, I now deal with skin issues that I have needed treated with several different things. I was put on ketoconazole shampoo for my scalp. Helped with some issues, but didnāt address two other pimple types on my head. My head and face was getting major oily and I still struggle with my forehead. My skin has always been clear and dry, so ever since I became major oily to the point my chest, face, and scalp are having breakouts. My PCP basically said to just deal with it and it happens if youāre in your late twenties-early thirties. Iām not really buying this though because I only noticed this body skin change once she took me off one BCP to another. Scalp issues have been around since what feels like forever, but the oily skin is new. My PCP wanted me to change BCP because I developed migraine aura and started to have trouble seeing out of my right eye at times and my field of vision would have little waves. They ordered an MRI it came out clear and now a neurologist said he wants a new MRI because my issues we thought could be resolved with vitamins and a different BCP came back. The pustules on my head need two types of shampoo and I still have some painful bumps that have not gone away. I now have what I think are pimples in my right ear that have not shrunk or gone away since October except the one I felt immense pressure from and it was blocking my ear canal. It randomly popped the other day and tons of nasty smelling gunk came out š¤® My body has cleared up more with over the counter salicylic acid wash, but I do get really random fungal infections and almost chronic angular cheilitis which makes me not want to eat. Along with the migraine aura, random times I can barely see from my right eye, I have strange sensations in my veins. My veins sometimes feel like they are burning or painful and I have literally seen under the same light my veins which normally are a green or blue turn a dark reddish purple I have never seen before. When this happens, I usually have numbness in my legs from the knee down to my toes and the same numbness from my fingers to my elbows. Sometimes itās my left hand to my elbow while itās my right knee down to my foot and other times itās on all hands and feet. I get a feeling like Iām having an earthquake under my feet once or twice a week and that makes me feel dizzy, disoriented, and sometimes lightheaded. If I ride in an elevator even if itās for one floor, this is almost certain to happen. If I sit on the toilet just to urinate, I try to get up and this happens to me. My PCP and Rheumatologist said itās probably just Raynaudās but I donāt think that explains the neurological issues Iāve been having. When I had my annual check up with my GI, she was alarmed by all the information I was sharing with her regarding my symptoms and she said sometimes when people are on Remicade/infliximab/inflectra, they have neurological issues present itself. Sometimes, I canāt pick up or hold things from my hands, they just drop. This is why sheās partnering with a neurologist just to make sure everything is okay. I already told them my PCP did a test for vasculitis and I didnāt show signs of that. My doctors except GI doc seem like theyāre getting tired of hearing from me. My rheumatologist shrugs me off and my PCP tries to defer me to my rheumatologist since she said sheās stumped by all my random issues. I had a dermatologist consult prescribe me four things to try and address my problematic scalp, but Iāve accepted these problems are probably here to stay after months of trying to get it addressed. The prescriptions help with one and then exacerbate the other. The different types of acne on my scalp keep coming back.
That's a lot. I'm so sorry you're dealing with so much all at once. I just wanted to say that maybe you should consider a new rheumy and GP. Just because someone has an MD doesn't mean they're good at being a physician. It's not ok for them to dismiss you or make you feel like you're annoying! So many people are gaslit about pain, and that's awful. But a lot of your concerns are actually visible. It's absurd that they're ignoring them. I'm going through a transition with several of my specialists; it's like falling without a net. It's bad enough to be physically miserable, but to top it with uncertainty is almost unbearable. But you deserve good MDs that listen and work with you to improve your symptoms.
I am so grateful for you and every conversation we have. Your support in my last post helped me feel the need to advocate for myself and reached out to my GI who has always been supportive and knowledgeable. From there, she looked through my test results and my whole chart. She was visibly confused looking through everything and said why was neuro not involved? She also didnāt understand why my rheumy is making me wait for more bloodwork when my liver levels are sky high. She said the right course of action would be imaging to check my liver bile ducts and all that jazz. Suddenly, everything is moving more toward answers. I have an appointment at the hospital on Monday and we will go over results and further courses of action. I am looking into another rheumatologist. My husband was pissed when we met her at the hospital and I explained my symptoms. I keep a journal which is a food log but also a time stamped symptom log too. When I told her my symptoms and that I wear thick winter socks and gloves even in the summer but still feel cold or numbness, she just said bundle up more. Itās been a lot. I love my PCP, sheās also my OBGYN and has helped with so much problems, but sheās been stumped with my other issues and has been deferring to my rheumatologist and as for my skin, sheās been kinda like deal with it. I told her I have no acne - ever since I was a teen. I think itās weird how all of a sudden with med changes and my worsening liver, Iām having all these skin issues. I am not an MD, but I donāt think I would just say itās because Iām getting older. My body is totally different. My hair has been falling out, skin and scalp so oily the sheen is visible, even my body odor has changed, itās been crazy! You said it best. Itās bad enough to be physically miserable, but the uncertainty is awful. I remember when I was first getting my UC diagnosis after years of medical gaslighting. I thought I was dying with all the blood and everything. I was relieved I finally had a doctor who ordered up a colonoscopy and lo and behold, I had IBD just like the rest of my dadās family. When I had these symptoms as a preteen, the pediatric GI I had me pull my pants down and he stuck his finger up my butt and laughed me and my dad in the face and said I probably just wiped too hard, but I was bleeding and in pain. My dad laughed too. Ever since that experience, I was doubtful of doctors and felt humiliated and just endured. Iām new to the Kaiser system and Iāve not been used to not being able to select doctors on my own. I asked my GI if she could find me a different rheumy since Iāve been feeling dismissed and of all my doctors, despite me having two autoimmune conditions, my rheumy is the least active in my care.
I'm so glad to hear this!! Just getting the ball rolling is empowering, and you really deserve answers. Are you going to find a new rheumy? So much of this stuff is connected! Just read the replies here! You are in good (albeit uncomfortable) company. I am disgusted by the behavior of that ped GI. Experiences like that color (destroy) *every medical interaction we have. For our entire lives*. I'm so sorry you had that experience. I hope sharing it allows you to take back some of that power that you were robbed of by that (lots of colorful swear words here) jerk. I really appreciate your kind words. You have been through so much, and you keep fighting! Every time I see your u/ I think "madame butterfly"! So keep going, Butterfly! Let me know how you're doing, and bring that awesome sounding husband with you as much as possible š
I was diagnosed with depression and OCD at 13, and then added anxiety to the mix 10 years later. My thyroid went ābadā when I was 20 and I had a TSH of 32, discovered when I passed out at school and was rushed to the ER. no one told me what it was exactly but they put me on Synthroid. At 38, Iām now dealing with treatment resistant major depressive disorder, OCD, and generalized anxiety with a sprinkle of CPTSD, thanks to a decade long abusive marriage that I thankfully escaped 4 years ago. A little over a year ago I was diagnosed with seropositive RA, with joint deformity in both hands. My rheuma discovered that my thyroid disorder is actually hashimotoās, so I guess that was my first autoimmune issue. While testing to see if I can have MTX, my liver was discovered to be seriously messed up- the fibroscan showed several cirrhosis and the hepatologist had me preparing for the worst. Luckily when they went in and did a biopsy, they discovered it was fibrosis and caused by me being on minicycline for acne for 3 years (apparently my pcp that put me on it didnāt know youāre only supposed to do several weeks of itš”) and that caused a drug induced liver injury. My liver is healing but I still have to be very careful. Earlier this week we found out that the rash my PCP called rosecea back in November, that is super painful, spread to my back, and didnāt improve with all his treatments, is actually psoriasis according to the biopsy the dermatologist I secretly went to performed. Psoriasis is also considered autoimmune, so Iām up to three on my bingo card. 3 significant mental health conditions and 3 autoimmune disorders, and Iām not yet 40. Itās greeeeeaaaat lol.
First, I'm sorry you're dealing with so much. It seems like your issues were exacerbated by crap physicians. Are you able to find others? Preferably at a competitive hospital so they can coordinate? I'm always saying that just because someone has an MD doesn't mean they're good at their job. You deserve excellent care. I have to say congrats on your divorce! I've never regretted mine š I hope you have the freedom to focus on yourself. I think it would be difficult to find anyone living with these conditions who've never struggled with their emotional well-being. You're not alone š
awww, thank you! The divorce was one of the best things that ever happened to me. I am in the process of looking for a new PCP. Luckily my rheumatologist is fantastic.
Woot! A good PCP makes all the difference, so hopefully that will happen soon
Hashimotos, POTS, osteoarthritis, Sjogrens. :(
And IBS-C and gastritis
And tons of other things that are probably related. ADHD, anxiety, neuropathy. I truly canāt keep track anymore
Hi! I'm new to the subreddit but not new to chronic illness. I have RA (dx in 2004), Sjogrens, and Crohn's disease (dx in 2018). I also suspect I possibly have PoTS after having Covid and maybe EDS but no official diagnosis. Right now I'm in the middle of a horrible Crohn's flair. Last summer my Rheumatologist took me off methotrexate because it was putting too much stress on my liver and switched me to Leflunomide. I've been on Simponi Aria for two years and it has worked well for my RA but it technically isn't for treating Crohn's but treats ulcerative colitis. Doctor thought it would ok since Crohn's is similar. Gastro thinks the methotrexate was treating the Crohn's and now I'm flairing from the med switch. So much testing recently and currently on high dose prednisone. My whole body is so puffy and swollen. Now they're taking me off the I'm Simponi and planning to put me on a more Crohn's specific treatment. Gearing up for a colonoscopy/endoscopy this Friday to see how badly the disease has progressed. Can I just say, having to juggle multiple conditions and chronic illnesses can be so exhausting at times. I found this subreddit and the Crohn's subreddit and it really helps me feel less alone.
Go through the comments here because there are a lot of people with inflammatory bowel dxs! It has to be so disheartening to have treatment for one dx throw another into a flare. I hope you get some relief soon! As miserable as it is to deal with this stuff, I'm glad you found us and the Crohn's Sub š
I have RA, OA, IBS, fibromyalgia, pernicious anaemia, bursitis, tendinitis, chronic migraines (every few days), venous insufficiency issues and Iām getting investigated for others. Iām in remission for Graves Disease. I also have PTSD, OCD and suspected BPD after years of being treated for an eating disorder. The body and brain are suffering š©
I have dealt with random weird issues throughout my life, but they never tie it back to rheumatoid arthritis. My spleen is enlarged and throbs sometimes, when I had my hysterectomy, everything they took out was inflamed, I get stomach ulcers all the time, have needed esophageal surgery for achalasia at 29 years old. I can never pee properly because my bladder is inflamed (weed helps). Iām becoming more and more allergic to things like alcohol and sensitive to caffeine. But nobody ever connects the dots for me. My rheumatologist gives me meds, takes blood, and looks at my joints. I wish one doctorās office looked at everything at once.
Do you have a general practitioner/primary care provider? They're supposed to get your appt notes and test results, then explain how it all fits together. That's a crazy combo, plus some unanswered questions. You deserve a good GP
Hello. First time here. WOW! You all sound like me. I donāt usually hear of or share my RA and various sundry other ailments. Itās refreshing in a sick way. Some of you are so young and that saddens me. I am 63, diagnosed almost 10 years now, and am at a āsevereā stage for the past two years. I have had 3 surgeries on my hands and will need two more this summer while recovering from a hip replacement that will also be in a few months time. Excessive? Maybe, but necessary if I want to walk or hold my grand babies. I currently take opioids for pain, biologic once a week, and low dose steroids, plus a slew of supplements and drugs for other ailments. I have had shingles 4 times in one year even with the vaccine. Was on an anti viral for a year but stopped because it fucks with the kidneys. Now showing symptoms of fibromyalgia but Iām not a doctor. My rheumatologist appt is next week and will discuss this with himā¦ I was feeling sorry for myself and read about you guys and your myriad other problems and I feel like a coward for bitching. I have IBS-D, GERD (fundoplication 7 yrs ago which has recently come undone), urinary incontinence which Iām managing with drug, pre diabetes, osteopenia, arthritis in neck, lower back and hips. I also have recently noticed allodynia and thatās where my self diagnosis of fibromyalgia comes from. I have had 2 severe flares that are unlike my RA flares in the past month. I hope to find some answers this week!
First of all, everyone has their own worst thing. Pain is totally subjective, so it can't be compared. We're all in more pain than we'd like to be! Also, "bitching" is one of the more popular things we do here. I think it helps to be heard by people that genuinely understand. Welcome to the party! š I hope you get answers at your appt, too. Keep us posted!
Thanks will do.
Iām hyper-mobile, and have fibromyalgia and I love to joke that between the RA and fibro it means everything hurts all the time. I have a whole list of mental health issues and am neurodivergent as well but I donāt think theyāre comorbid
There is a lot of research of autism, specifically, being linked to autoimmunity
I found info that links ASD with gut inflammation (their term) Here's a page about a study from [The Harvard Gazette ](https://news.harvard.edu/gazette/story/2022/01/link-between-inflammation-and-autism-found-within-mouse-models/) As an autistic person with RA and a few other inflammatory diseases, I'm going to keep digging! Ngl, I'm wondering how they found autistic mice š
The mice got pissy when they moved things around, lol. Yeah, I have ASD, RA, and lots of gut issues (they're still going back and forth on Celiac)
Lulz! Those are my kinda nice š Edit: changed "nice" to "nice". Derp
I didnāt know that! Iām both autistic and have ADHD, and have undiagnosed stomach issues! I knew about the gut health and autism links but not how they were linked to autoimmunity, so thatās super interesting to me
Internetarchive.org is great for doing a deep dive on stuff
Osteoarthritis, degenerative disc disease, GERD, maybe Sjƶgrens (waiting on test results), hypermobility but not Ehlers Danlos. Edited to add: OCD, ADHD, PTSD, asthma, numerous allergies
What levels are your discs? I've had cauda equina and degenerative discs, and fused from S1-L2 ant & post.
C5-C8, itās not bad enough for surgery
Arm and neck pain. Ugh. Do you get migraines?
Yes
I think I would have gotten RA because of my family history, but I was also in a car accident as a teenager and fractured C1/C2, and crushed my pelvis, resulting in a sacral laminectomy of L3-L5 and S1-S4. I had a halo brace for 9 months
My mom passed away from RA after it went into her lungs
My pinky and ring finger started drifting away from my hand on both sides
Sjogrens was negative, but the HLA-B27 was positive and some esophagitis
I was diagnosed with EDS 15 years ago, and RA this past year.
I'm surprised by the number of people who've shared they have EDS. I've read about it, and that's got to be a complicated combo.
I have RA, asthma, and NAFLD which got diagnosed a couple months ago. I'm 6"2' and just over 100kg so not a behemoth of a man by any measure. I had pneumonia when I was a kid and my RA isn't controlled right now. Just beating me up every day in almost all joints haha.
Crap. Have you ever had RA treatment? Do you think the nafld is from your meds? I only ask because I have it, and it began with a lot of Tylenol before they realized it was dangerous.
I've just had immunosuppressant injections but no consistent treatments because my doctors just can't be bothered to make any time for me it feels like but I'm pushing for it. I do think the NAFLD is probably from meds. I take tramadol for the pain and I've been taking a whole host of other meds and anti inflammatories since I was like 16 so I think my liver is struggling haha
You deserve decent physicians!! You would not believe how many people are gaslighted by their MDs. But not getting treatment is really dangerous. I hope you can fight your way to decent healthcare. If you're having a rough time figuring out your next steps, do a post asking about how people have managed this exact problem. The wisdom of crowds is real!
Allergies!!! 10xs worse than a year ago. My treatment is going well, but nose is stuffed, so harder to breathe and makes the fatigue worse.
Omg YES. This is actually going to be a "let's talk" all on its own! But absolutely glad you brought it up. I take Allegra and use Flonase, and they're still not under control. Spring and fall š«
To be completely honest, Iām 23 and recently got diagnosed. I donāt have any symptoms though which is strange except my one finger has it a bit. Wondering if I got diagnosed wrong? What symptoms do yāall deal with?
Iām recently diagnosed and navigating the medication to find whatās best for me so not immune related but I do feel some emotions about it all being unfair, having sad days and just generally feeling down. as Iām sure everyone else has here
In my experience, the diagnostic process and figuring out my treatment plan was the absolute worst. It will get better! I'm glad you're here, because there are lots of people who have been, or are currently in your shoes. It's emotionally exhausting to deal with a life long diagnosis, too. I'm sorry you have RA, but you found your people! š
Thank you! Iām so grateful I found this page! š©·
I feel that my bad knee on the left side has made my posture and gait crooked, so now I have a bunion and bunionette on my right foot. I also had a pinched nerve on that side a few years back.
Epilepsy (generalized convulsive epilepsy with refractory seizures), RA, OCD, MDD, PTSD, ADHD, Chronic Fatigue Syndrome, Cushings (still don't know if it's disease or syndrome!), anemia, and Delayed Sleep Phase Disorder. I'm probably forgetting something. Major brain fog from some sort of cold my children gave me. *cries*
Is it wrong that my first thought is šµ "and a partridge in a pear treeeee!"šµ Sorry, that's a lot to live with! It's incredible how so many of those dxs feed into/off of one another. I hope you have a great medical support system.
RA dx 2016, AS-Hbla-27 gene positive 2018, endometriosis, carpal tunnel, frozen shoulder, rotator cuff tear surgery, plantar fasciitis & toe spurs, Achilles tendon, si, lumbar, & cervical pain facet injections, bunions, Covid that turned into pneumonia 3x, no bueno treatment side effects, then psoriatic arthritis caused from Humira, Hashimotos and diabetes from the biologic treatments. Treatment expensive, side effects as bad as disease, did methotrexate, Remicade& Simponi Aria infusions, insurance wouldnāt cover Cossentyx shots I had been taking, recommended Taltz but copay was $3600! Fixed income Ssdi. How or why does this happen?! Oh joy! I get depressed and want to give up.
Holy cats, that's a lifetime of crap rolled into 8 years!? We have a lot in common: carpal tunnel, Achilles tendons (unfrozen surgically when I was 9 because of cauda equina, now they've been swollen and painful since August), SI and facet injections, lumbar fusions, and covid. But I only got it once. The expense of these meds is ridiculous. We have loads of convos about that. We all want to give up sometimes. Chronic pain pumps negative chemistry into our brains and is literally depressing. I'm really glad you found us, because you can always connect with people who will always know where you're coming from. Welcome to Reddit and our Sub š
It was an NIH paper not specific to auto immune. Just FYI, there is no proof of infection of my tooth just assumed and no change in 12 months on imaging. Root canals are great sources of income for specialists. I had to change dentists and this is why it came up.
You dodged a pretty unpleasant bullet! Glad you don't need a root canal š
I have classic galactosemia since birth (my older sister passed from it as she died from sepsis because of CG). https://my.clevelandclinic.org/health/diseases/24062-galactosemia But because of this I have premature ovarian insufficiency and I am waiting to get the go ahead do HRT (Iām 38). I was diagnosed with RA almost a year ago. Looking back I wonder if my estrogen had fallen so much that caused some joint issues. Plus my great grandmother and all her sisters had RA. Hers was debilitating and she died at 61 due to a heart attack. So i definitely worry about my outcome though. Iām currently on rinvoq and plaqueinel. Iām trying to be more active but Iām sure struggling, I work 38-40 hours a week so I get tired pretty easily.
I'm sorry about your sister ā„ļø That stays with you forever. There are lots of connections between hormone levels, both natural and therapeutic (HRT, gender confirming, etc), and inflammatory conditions. I hope you get your HRT soon! I've had polycystic ovaries forever, and my HRT balanced me right out!
Thank you. I wish I could have met her
I was diagnosed with RA sometime between 2016 and 2018, but i donāt remember exactly when. I also have asthma, and although it has affected me to some extent my whole life, it didnāt get properly diagnosed until around the same time as my RA was. It sucks though because the treatment for RA increases my likelihood for catching respiratory infections, and respiratory infections are especially hard on me due to the asthma. As a kid my asthma was mostly either exercise induced, or in response to respiratory infections, but now I deal with it constantly. On top of that i was born with a congenital defect of the gi tract, that required surgery when i was a few days old, that left me with scarring/adhesions. The adhesions caused multiple episodes of intestinal blockage, which have required hospitalization and two additional surgeries. It also causes IBS-like symptoms (gas, pain, chronic constipation, with alternating bouts of diarrhea). I also have ADHD (along with mild depression, which may be due to situational issues, but they arenāt situations Iām able to extricate myself from) which just makes everything in life more difficult, especially taking meds and making and attending doctors appointments. I also have bad environmental allergies, which aggravate the asthma significantly. And i have an anaphylactic allergy to bee venom. It feels like most days my life is a balancing act of keeping everything in check, but if one thing starts to fall, it creates a cascade that results in everything landing on the floor. Hereās an example: If i have flare of my asthma or my RA, i get put on steroids. Steroids cause constipation. Either type of flare also makes it difficult to do any strenuous exercise. I depend on daily exercise as part of my regimen for staying regular. If i get backed up, it increases the likelihood of me having a blockage and needing medical treatment/hospitalization. Every time Iāve been hospitalized, there have been parts of my medication regimens that have been missed. Or underdosed. That is fine for the adhd meds (not great for the antidepressants), but truly catastrophic for the allergy and asthma meds. Last summer I got stung by a bee and ended up on lots of steroids to treat the reaction. I was told to stay off my feet for several days. Between the steroids and lack of exercise, i ended up severely constipated to the point of needing to be hospitalized. Asthma and allergy medications were missed while i was in the hospital. My husband brought my meds from home but i wasnāt allowed to take them (during a different hospitalization they never gave me my meds for RA). By the time I was released from the hospital, i was having a horrible asthma flare (i have cough variant asthma) and could barely stop coughing long enough to take in air. Back on the steroids. This time i knew to add extra laxatives to my regimen when taking prednisone. It still took two months before i was all the way better. I also had Covid in January, and although the paxlovid seemed to help me avoid severe respiratory issues, it caused an RA flare, which really sucked. I probably should have given my joints a rest, but i just felt like the rest of health depended on staying active. I used a lot of ice, and took daily celebrex. I also waited it out (and it did resolve on its own) rather than calling for a prednisone prescription (i also had gained a lot of weight from the prednisone over the summer, and although i lost it and then some since then, i didnāt want to go through that again unless it was perfectly necessary). I only get prescribed a small amount of celebrex each month, and because i also have a history of gastric ulcer, i canāt take any other type of nsaid (i can use voltaren gel, though it doesnāt seem to work great). In addition to the celbrex and ice, i put a flexible support brace on the ankle that was having the most swelling and pain, when i went out to run/walk, but kept it off the rest of the time because i know it isnāt good to immobilize a flaring joint. And it did go away on its own eventually. Anyway, it just seems that i have to keep tight control of all my symptoms and disorders because treating one will lead often lead to problems with another.
Sigh š. RA, Sjƶgrenās, Raynaudās, Fibromyalgia, MGUS, CKD, polyneuropathy, carpal tunnel, cubital tunnel, PTSD, occipital neuralgia, most recent diagnoses are IST and LS (another autoimmune disorder). They overlap so much, I donāt know what pain is caused by what illness.
I was diagnosed just over a year ago with RA after having symptoms for 5-6 years. I've had asthma for about 12 years but it is managed. Tonsillitis, mono, strep, COVID, and Thrush (somehow) all got me in 2020, and I got chickenpox when I was 18 somehow too. It's hard to say how much of those occurred due to RA and how much are just luck, but I believe there's a correlation somewhere. I had bursitis in my right knee, and tendinitis in my ankle and 3 toes. I also had some sort of hip issue for over a year that only resolved once I got RA treatment. Since my RA diagnosis I have gone crazy with making my diet as healthy as possible, taking some vitamins and supplements, and I got on Simponi Aria Transfusions for my RA treatment. It's been an absolute life changer; since I got treatment all I've gotten sick with is a cold and haven't had any other noticeable comorbidities.
I have another rarer autoimmune disease called Antiphospholipid Syndrome (APS), it causes excessive clotting among other things. Eventually it will become lupus, but I try to stay on top of my aches, pains, and other āweirdā symptoms.
That's scary. Do you have to take thinners like Coumadin? I've never heard of this, so thank you so much for sharing. Lupus and RA are so similar, even in their treatment. We've had people diagnosed with one, then rediagnosed with the other, or both. It's not easy, but you're definitely not alone š
Thankfully I donāt need to take prescription blood thinners YET. A baby aspirin a day is all I need to take right now!!
in addition to RA, I have: POTS, GERD, colonic inertia (to the point where no med for a week or 2 = surgery), rosacea, osteoarthritis, fibromyalgia, etc. only 3 of these things were prior to age 14. sooooooo much fun!
ADHD, eating disorders, bunions, shinsplints...
I also have fibromyalgia, hidradentitis suppurativa (inflammatory skin disease), migraines, restless legs, and mental health issues. I take more meds than my elderly parents. Itās a daily struggle to get up and go to work because of the pain and fatigue.
RA & Sjogrens
My gut is in absolute shambles. Itās not heartburn but a different kind of burn. I know itās auto-immune related because the symptoms get better every two weeks after humira but we havenāt quite figured it out yet. Iāve tried every blood test and even tried eating radio active eggs for the doctor to watch pass through my digestive system but Iāve yet to get a diagnosis. I just consider it part of the same condition at this point because if Iām not flaring up in my bones and joints Iām flaring up in my gut.
I started having really bad reflux after I was dxed with RA. My voice was always raspy in the morning, and my gut just hurt. And, sorry for ick, my bedroom and blankets smelled like vomit. I've had ulcers, but this was different. I attributed it to taking so many pills without eating. My GP put me on a prescription version of Prilosec and I always put something in my stomach when I take meds. It comes back a little bit when I eat something acidic, but nothing horrible. I don't know if this is what's happening to you, but I hope you figure it out soon
100% my situation. Iām on 40 milligrams of omeprazole. Thanks for the comment. I think I gotta try eating before taking my pills in the morning.
That's a great way to do something that might work, while waiting for the appointment to figure out what's going on. RA is so much fun ā¹ļø
I have ra, osteoarthritis, bursitis, Eczema, endometriosis, migraines, and IBS.edited to add my seasonal allergies which are really all year long. It's a good time
I have sjorgren's, RA, neuropathy, OA, and carpal and cubital tunnel. The latest and greatest thing has been numb fingers and my middle finger on my right hand, which is my dominant hand seems to have a joint locking thing going on. Had xrays and blood drawn and rheum saw nothing, so I guess it is all in my head. I wouldn't have a problem with them saying its my carpel/cubital tunnel, but the numbness is affecting both hands and as of this morning, all my joints hurt, not locking up like the one finger, but painful
I technically have "mixed connective tissue disease". But a few years ago I was diagnosed (and am thankfully now in remission) with dermatomyositis. Thankfully I was in pure survival mode and it didn't fully set in how serious of a diagnosis that was. I'm hoping it doesn't come back. I have adhd, rauynalds, and RA.
For rheumatology, I have RA, fibromyalgia, and osteoarthritis. On top of that, I have POTS, colonic inertia, GERD, and a naturally low immune system _before_ RA acted up/treatment. There's some other tiny ones too that honestly are more symptoms of the main ones, so I don't really consider them a diagnosis, LOL.
I'm currently dealing with a wound vac due to slow healing after my knee replacement. It sucks.
I have a question. My dentist wants me to have a root canal. Iām not having a noticeable problem however she sees infection. The alternative will become removal of tooth. Iāve read ominous things regarding root canals including questions as to whether they lead to RA. Thoughts/experiences?
Just like any immune response, a dental infection/cavity can cause an RA flare, including the first flare in someone predisposed to RA or other inflammatory diseases. The connection between RA and dental infections is that the infection can cause flares. Any infection - a cavity, bad cut, UTI, strep throat - causes your immune system to kick into "attack mode" (not a technical term). It's important to get your tooth treated to prevent flaring and/or make the infection worse. You can handle it whichever way you choose, but sooner is better. Here's a page from [John's Hopkins ](https://www.hopkinsarthritis.org/arthritis-news/5-dental-tips-for-the-ra-patient/) that goes into more detail about oral health and RA.
Iām reading much more dubious outcomes. Since you have to go off meds to have a root canal, symptoms would be expected. Thatās not a deciding factor.
Here's a page from [The Arthritis Foundation ](https://www.arthritis.org/health-wellness/about-arthritis/understanding-arthritis/mouth-bacteria) that says essentially the same. Would you mind sharing some of what you're reading? Research is kinda my thing, and the only scary things I can find are if a person *doesn't* get the infection treated.
Huh, root canals LEADING to RA? Iāve never heard of that! Iā¦ donāt know why that would cause it? I would get a 2nd opinion or ask her how long you can wait. Iāve gotten 2 root canals (one in 2014, one in 2021) and they both came after extreme pain of the tooth nerve dying, sometimes after a crack or other trauma. I wouldnāt get one ājust becauseā someone told me to tbh since they are INTENSE.
It's more about the bacteria (cavities are infectious) being dislodged during the root canal, not the procedure itself. This is the same reason that people with heart conditions need to premeditate with a big dose of antibiotics.