From Remission to Flare
I lost my husband to cancer 14 years ago. Sometime after the funeral, I woke up one morning and could not move a muscle without severe pain. It took me an hour to finally turn over and slip onto the floor of the bedroom. I managed to crawl downstairs and phone my daughter. This was the beginning of my lifetime journey with rheumatoid arthritis (RA).
Initial diagnosis and treatment
After being seen by a specialist, my RA was confirmed. The doctor gave me four cortisone injections—one in each shoulder and one in each leg—and started me on Methotrexate tablets. However, I could not tolerate the tablets and spent every day lying on the couch, feeling too sick to do anything.
It took over six months before the doctor switched me to injections, which I used for about three years. While on the injections, I felt like a different person and only experienced sickness one day a week. However, because of other health issues like bronchial asthma and acute sinusitis/nasal polyps (for which I’ve had several surgeries), I decided to stop the injections, feeling that my body was overwhelmed with medication.
Period of remission and frustrations with care
For four years, I had monthly blood tests and occasional appointments. The doctors mainly focused on my hands, dismissing other pains as osteoarthritis. Despite informing them I had stopped the injections, they seemed unhappy but did not pursue the issue further. Remarkably, I experienced remission for about three years, and by August this year, they were ready to discharge me.
I repeatedly mentioned pain in both shoulders, but they insisted it was osteoarthritis and continued focusing on my hands. At the end of August, I woke up in severe pain, reminiscent of when my RA first began, so I contacted the hospital.
Pain worsening and lack of follow-up
A woman at the hospital examined my joints, which were now so swollen that I could no longer wear my rings, even after resizing them two sizes larger. She arranged an ultrasound, which I had in July. The doctor conducting the ultrasound told me, “You have an awful lot of wear and tear in your joints,” but I have heard nothing further since.
In recent months, the pain in my shoulders and hands has become unbearable. Desperate for relief, I sought an appointment with my doctor to get medication. After much effort, I finally secured an appointment last week.
Featured Forum
View all responsesA detailed consultation with a new doctor
The new, young doctor spent almost an hour reviewing everything with me. She checked my neck, which hurts when I turn it in any direction—a difficulty that makes driving challenging. She typed extensive notes and told me she believes my RA is causing these problems. She arranged blood tests and an X-ray at the hospital, promising to contact the RA team directly if the results confirmed RA as the source of my pain.
Discovering overlooked information
I checked my medical records after the appointment and read attached notes. To my shock, the hospital had repeatedly dismissed other pains as osteoarthritis, yet the documentation clearly stated that persistent neck pain spreading to shoulders and lower arm joints is a symptom of RA. This has been my reality for years, but it was never explained to me.
Feeling disillusioned
I’ve spent years taking painkillers, hoping the pain would subside, without understanding its cause. Now, I feel disillusioned, having been told for so long that these issues were unrelated to RA and seeing them ignored despite their impact on my life.
Join the conversation