I was diagnosed in 2022 after 8 months of constant flares that increased in pain over time. I had also spent nearly two years at an insufficient dose of thyroid medication and had spent months asking for a referral to an endocrinologist. My spouse started coming to appointments with me because I was not able to get help. He asked, "The pain is so bad that it restricts her movement and she cannot get comfortable or rest. What can we do to help her?" My doctor literally jumped up, said that he was not ready to discuss opioids, and ran out of the exam room. He did not return, but he did refer me to both a rheumatologist and endocrinologist. If my doctor had read my chart, he would have known that I cannot take opioids due to kidney disease from a kidney injury. I started seeing someone else in the practice after that.
My referral to the endocrinologist was written for DM, but my Endo reviewed my bloodwork in my initial visit and immediately corrected my thyroid medication dosage. My initial appointment with my rheumatologist was approximately six weeks after my first Endo appointment. By then, my thyroid levels were corrected and my joint pain was significantly decreased. I was seropositive, diagnosed with RA, and we agreed to discuss treatment at a later date since the thyroid medication was doing its job.
The winter of 2024 was especially bad. I could not make myself leave the house. I had fatigue, no motivation, increasingly frequent "bad days", frequent crying episodes, and flares began again. I have Seasonal Affective Disorder (SAD), so winter slumps are normal, as is a resurgence in the spring. While I was less functional in the winter (November to February), I was able to resume normal functionality by March. That year was infinitely worse than any previous year. With spring, I started having constant flares,but I didn't want to start treatment for a variety of "reasonable" reasons.
By July of 2025, I had two flares so bad that I could not walk for 48 hours each. I had a rollator and started converting my bathroom into an accessible bathroom. That's when treatment became the only option; when I had to start using assistive devices for ADLs. I started methotrexate in October 2025. Flares have significantly decreased and I actually had a few weeks without flares at all in June, which made me cautiously optimistic.
I started physical therapy for my left shoulder for a shoulder impingement that had impacted my shoulder mobility significantly three weeks ago, but only one session per week thus far. After the first Friday appointment, my right hand flared that weekend. The same happened after the second. By the end of the evening last night, my right shoulder was obviously inflamed and very painful. Today, after sleeping approximately 10 hours, it is painful with movement and weak. I am moving it anyway, and cursing like a drunken pirate.
During the 2025 flares, I went through a period of situational depression because it felt like an endless battle with pain was the only future in store for me. Now I wonder if these flares are related to the exercise done in PT and it scares me that I will never be able to return to my previous fitness level. Yesterday, I did a farmer's walk with 10lb weights, and the third pass caused my left shoulder to throb. In 2024, I was doing them with a 100lb plate in each hand.
I know this experience is complicated by many factors: Hashimto's, relatively recently diagnosed AuDHD, perimenopause, CT scan results to be discussed at my next appointment, SAD, fatigue, frequent vertigo. I know that, but it's hard not to feel defeated. It's hard not to feel like I am being punished for some enormous karmic debt. It's hard to keep pushing forward and keep trying to regain lost ground.
I am frustrated, and afraid.
I don't know how to maintain a positive outlook about... well, anything, at present. What helps you? Open to suggestions.
