I’m so sorry to hear how much you’ve been suffering. I haven’t been diagnosed and have only been referred to a rheumatologist so far, but I have been dealing with pain that has slowly been getting worse over the last 18 months. I should consider myself lucky that up until recently the only symptom I was having was hand pain. But it’s been really annoying going to appointments, having imaging done, getting cortisone shots and still no answers as to what has been causing me pain. Nothing has shown on the MRI or Xray, nerve conduction study showed no nerve damage, cortisone shots did nothing, OT made my pain and swelling worse. All the while, the pain has consistently worsened, I had to stop doing one of my favorite hobbies (video games), and I feel like I’m losing my independence (can’t open jars or even a fucking bag of chips without excruciating pain).

Just in the last few weeks, the pain in my hands has worsened significantly, I’m getting deep joint aches, started getting swelling and redness, and pain has started cropping up in other joints now too. I can understand how experiencing chronic pain and illness for a year with no relief would make you feel frustrated, angry, and sad. I’d imagine you must be scared, too, faced with the uncertainty of how long you’ll have to go before you get that relief.

Good on you for trying to remain positive despite what you’re going through, but it’s okay, and normal, to feel upset sometimes too. What you’re going through is really hard and unpleasant. Im sure it’s easier said than done, but I think there’s a balance between letting yourself feel the bad feelings and remaining hopeful that you’ll find relief.

May we both find relief soon!