Hi, I was diagnosed with ME eight years ago. I've always thought the diagnosis was accurate until fairly recently. Over the past year or so, the usual things I do to help my ME (diet, pacing, supplements. B12 injections etc etc), started to feel as though they were becoming less effective. Well, either that or my ME was taking a downturn and yet, I'd always managed to keep myself 'fairly' (ahem) stable.
I had a 'gout' attack in my big toe and then a shoulder problem, which was thought to be maybe tendon-related. My fatigue got worse, so I asked for blood tests and results. My ferritin was 22 (10-150ug) my neutrophils -1.72 were low (2-7) (and have remained low for the past 12 months, rendering the whole WBC as low). Also my eGFR was 81ml/min, which my doctor noticed was a poorer result than when last measured, although not too much to worry about.
Anyway, last couple of weeks in the evening, my husband commented that I was flushed and I felt as though my cheeks were on fire. I do a low allergy diet so was surprised to see a reaction to food. It happened every night for about two weeks or so and has now calmed. I took a photo and when I looked I could clearly see what I think is a malar rash. Sharp definition on cheek area (red skin next to white) and up over the bridge of my nose, where it looked like sunburn (felt like it too).
During this time I also had lower back pain and digestive upset, which I went to the GP for. Felt like I was going mad 🙄 My Raynaud's also started acting up (but I've always had that and it is cold at the mo).
Ok, so piecing these puzzling symptoms together, I thought Lupus. Am I being silly? My rash has now gone but my knuckles and wrists are sore and I've never,ever suffered with my joints in my hands before. I feel a bit better again now with fatigue etc.
Sorry for this to be so long and boring but some of my symptoms are no longer fitting my ME diagnosis, so what's up? Does this sound familiar to anyone? Thank you 👍