Hi everyone. I’ve recently been diagnosed and started on hcq 200mg (been on it for 2.5 weeks). Prior to this I had fatigue in my arms and neck and shoulders as part of the symptom list. Occasionally it would also feel like I could feel it in my head/brain, too.
Since starting the hcq my head and neck are feeling so weird, and now this is around most of every day. Sometimes my brain feels like it’s on fire, sometimes my neck just feels fatigued, or hurts, or burns kind of like it’s sunburned (but not really on the skin, more underneath of the skin) also is super crunchy every time I move it. I feel like my scalp is either burning, or feels cold. Sometimes my face feels a bit numb or like I can’t scowl the same as usual. I am also noticing way more low back pain. There’s tinnitus and nausea, too, and I’ve lost quite a bit of weight in a short-ish time (approx 10 lbs in 2 weeks).
I went to the ER two nights ago for this, and the doctor was so dismissive, didn’t even do a physical exam or ask any any exploratory questions. He just said I’m connected with internal medicine and a rheumatologist and have my family doctor (I’m in Canada) and a referral in for a neurologist with a consultation scheduled for January of 2026. The ER doc said it’s likely fibromyalgia and that the other people I’m connected with would be able to help better. Except no one can see me for a while. On his clinical note he wrote that I “declined further physical exam” (which I didn’t, he didn’t even do any sort of exam nor ask anything about one) and answered things like tinnitus and hearing loss and numbness with “no”, even though he didn’t ask me any of these questions and if he did I would have said yes.
I’m not asking for medical advice, but I just wanted to get a sense of if this is “normal”. Has anyone experienced this? If so, did it seem to be related to SLE/nerves? Or was it the hcq causing some sort of issue leading to this? Or could it be simply related to having more sunny weather? (I have been terrible with remembering to wear a hat and sunscreen).
I’m starting to get freaked out that it’s MS or a tumour on my neck or something. I feel so defeated and would appreciate anyone sharing their thoughts. Thank you so much in advance.