I (F22) have been struggling with something autoimmune since I turned 19. The first symptoms had me bedridden from pain. I had back pain that shot down my legs and wouldn’t go away with pain meds. My joints started swelling, most notably my hands, feet, and knees. I wasn’t able to sleep through the night and would constantly just toss and turn. I have had just about every autoimmune lab done, and the only things that have been elevated are CRP, ESR, and R factor. MRIs all negative for evidence of RA. I switched through a handful of meds until Enbrel finally stuck.
I had about 1.5–2 years of pretty solid relief, but recently it has stopped working as well. I am exhausted daily. I have such bad brain fog I can’t remember if I fed my dog 30 minutes ago. My joints swell in the heat, post-drinking, or if I do too much during the day. I have had night sweats intermittently for the past 10 months that will leave my sheets soaked. I have bad dry mouth, resulting in a few cavities each year when I’ve never had dental problems before. I also suddenly have a severe intolerance to drinking that will leave me sick for a day and full-body swollen for a week (I have almost entirely cut drinking). Recently, the biggest reason I don’t believe Enbrel is working anymore is due to this crippling fatigue and the addition of symptoms.
My doctor is trying to say it is fibromyalgia due to a depression diagnosis I got in high school. He said I have a low tolerance to pain and need to take an antidepressant, exercise, and go to therapy. I have and still do some or all of those things throughout this time being sick. I was heavily offended at the insinuation that this was mental. I understand fibromyalgia is a real thing, but I don’t think it is a warranted diagnosis when I clearly have elevated inflammation markers. Prednisone has also been a lifesaver in the past but is not a viable long-term treatment. I am at a loss for what to do now, as they want to discontinue all my meds and do therapy and an antidepressant. I demanded another course of prednisone and the option to switch to Humira, but I’m wondering if this could be something entirely different (like thyroid, POTS, MCAS, etc.) that none of us have considered.
If any of your stories sound similar or if you have any advice on how to move forward, please let me know. I am so over this whole process and genuinely don’t know where to go from here. This sickness has ruined my college experience, and I wish nothing more than to feel better, yet everyone is acting like I’m making this up in my head. Thank you for any advice offered!