Rheumatoid Arthritis (RA) - Introduce yourself and meet others

My name is Robbin Savala and I live in Oklahoma, USA.
I was diagnosed with rheumatoid arthritis and Anklelosing spondylitis in 2011. But it was not through the normal blood test. It did not show up in my blood work. It showed up on x-rays, and CAT scans,, and MRIs.
My (Rheumatologist) said that about 15% of the people who were diagnosed, had it found with x-rays instead of the bloodwork.
So I guess that makes me special lol... It was a real shock to find out. I had osteoarthritis as well. I was in the hospital for almost 2 weeks going through every test,imaginable, and I’m glad they finally discovered what was wrong.
I am married and have 10 children who I am very proud of ! 1 of them works for a Senator from Oklahoma!!I have 20 grandchildren, and 10 great grandchildren !!!
I love to watch mystery shows on TV, I like to crochet, and cook. And I like to play some video games. Yes I said video games. Skyrim is my favorite. I started playing it about six years ago as my doctor prescribed it to keep my arthritic hands moving, and less painful. He also said it would help the stiffness that I have in my fingers. I’m glad he did !
It really helps. And I love my fur babies. I have two dachshunds, and one Yorkie they bring me Joy. Besideshaving rheumatoid arthritis and ankylosing spondylitis, I have three discs in my back that are pressing against my nerves. They tried radio, frequency, ablation,a epidural, and It did not help. So they prescribed an implant put into my lower back and the lead wires go up my spine. It’s supposed to stop pain signals from reaching my brain. Lol, as it hasn’t helped me at all I think surgery will probably be the next step but I’m 70 years old and I still smoke. If anyone can suggest something that can really help me stop smoking I would appreciate it as nothing. I’ve tried so far works and I have to stop before I can have surgery so. I am in a lot of pain. I take about 14 different medicines daily, and that’s too much! Well no more talking about myself. It’s just depresses me.

I hope to meet a lot of people who have the same auto immune disease diseases that I have maybe Together we can beat the odds? Would like to hear your stories and what worked for you. what your hobbies are and how your families are doing? What helps your pain? And I’d like to make some wonderful friends. Thank you for listening to my story, lol.
Robbin Savala

@classy56 Ilive in Oklahoma too though I am from CT. I was diagnosed with Sarcoidosis in the early 90”s. A year ago came zero negative RA, then Sjogrens and ANCA Vasculitis! Tried hydroxychloroquine and prednisone . Was miserable. Then infusions of Rituxan for the Vasculitis. After the second round it seems to have worked for everything

Hi! Just joined. I am 70 y/o and was diagnosed with RA at age 8. I also have osteoarthritis. I hope to hear from others in the same boat who might share some of the odd symptoms I have. Such as: does anyone else get an odd feeling in their throat, almost like a sore throat, right before a flare starts? I call it my early warning system to take a rest, or start a prednisone taper. Doctors through the years only mention some bone(?) in or near the larynx (cricoid?) that can have RA in it, but apparently I don't have that. BUT, I DO get that sore feeling in my throat. Anyone else?
Also, I was hospitalized with both covid AND RSV early this year in April, and that has completely wrecked me. Exacerbated everything.
Please comment if you have that "throat thing." I know I'm not crazy (yet) but the doctor's says that there's "nothing there," but I've experienced it for multiple decades!

@racors I too have RA & OA, but haven't experienced what you describe. However, I also have periodic vertigo, and have noticed if my tinnitus begins to sound like bells instead of buzzing in different tones, I am about tom get hit with a bout of vertigo. Most docs I told that to just look at me like I'm crazy, but my current ENT nodded and smiled when I described it. She said "more people should listen to their bodies."

@racors nothing there as is not from an infection in your throat? Or nothing in the possibility that whatever feeling you get in your throat before a flare? I guess what you feel before a flare could be like an aura before a migraine…

@bswpb
No, never any infection found in the throat. Just a soreness that says "a flare will soon be delivered!"
I know a person whose husband tells her when a flare is imminent by the quality of her voice. He knows before she does!

@sueinmn
SO interesting about your tinnitus.
Even doctors with all their knowledge and training still don't know everything.
On some level, I think everyone with an autoimmune disease is a mystery. Hope we can learn from each other!

@sueinmn Unexplained vertigo? If you have RA or other autoimmune issues, it might be time to look into Ménière’s disease.

My own journey with Ménière's disease began two decades ago, marked by severe medical gaslighting. After suffering for years, my primary care physician dismissed my vertigo as psychological, suggesting mental health counseling—even after witnessing an acute attack that left me vomiting in the office sink.

My breakthrough came after a transparent conversation with my allergist, who referred me to an Otolaryngologist (ENT). I was so demoralized by my previous medical care that I began my appointment by apologizing to the ENT for wasting their time. Fortunately, they recognized the symptoms immediately, validated my experience, and confirmed the diagnosis through proper testing.

I wanted to share this here because I have since been diagnosed with Rheumatoid Arthritis (RA), low thyroid, and Osteoarthritis (OA). Looking back, it makes so much sense—research shows that about a third of Ménière's cases have an autoimmune origin. Having RA and thyroid issues significantly increases your risk because the immune system can target the delicate inner ear. Even OA can sometimes complicate or mimic these vestibular issues.

While awareness has improved over the last 20 years, misdiagnosis remains incredibly common. If your symptoms are being dismissed, let this be a reminder to advocate for yourself and seek an ENT.

I also want to share that there is hope. Today, my active vertigo attacks have completely stopped. While I still live with permanent tinnitus and some hearing loss from the disease—and experience occasional mild dizziness that may or may not be related—my quality of life is so much better. For anyone currently in the worst of it, please hang in there. It can get better. Has anyone else here with RA struggled with vestibular issues or a Ménière's diagnosis?

Hi everyone, I’m so glad to join this group. I’m retired, living in Florida with my spouse, our adult kids (who boomeranged home during Covid and are staying for now to build a nest egg), and our dog. Outside of managing my health, I love to stay busy with hobbies—we take a couple of international trips a year while we can, and I enjoy reading, gardening, cooking, baking sourdough, and doing home projects. I also love live shows, including all kinds of music, plays, and the opera.

For years, I brushed off my RA and OA pain as simple workplace strain from desk and computer work. Now that I know better, I’ve been connecting the dots across my autoimmune history. I’ve focused heavily on gut health, which has brought great improvements.

I try to stay positive and active to work through the pain, but I also give myself grace to rest. Lately, downsizing our home and walking our newly adopted dog has actually given me more mobility than formal physical therapy did!

Right now, I’m only taking hydroxychloroquine for the RA, as Methotrexate didn't work out for me, and it is helping. I have other autoimmune and medical issues, and I've found that the medical system really isn't designed to address complex histories holistically.

On top of everything, I’m currently on the fence about whether to start Evenity injections for osteoporosis. I’d love to hear from anyone else balancing RA with osteoporosis decisions, or anyone who has tips on navigating international travel and long theater seats with arthritis!

@thewellnessseeker Thanks for thinking of me - after extensive testing, we determined my cause of vertigo to be BPPV (Benign paroxysmal positional vertigo) and it is completely managed by awareness and executing specific exercises at the first sign. My siblings and I all have eustachian tube dysfunction, among other issues, and have been examined ad infinitum, but no Ménière's disease. I'm glad you also found a way to manage your vertigo.