In 2016, I was in community college about to transfer to a four year university. I remember it was February, and I had not felt well for a while. I got what I assumed was a bad case of strep throat. I went to the doctor, got told it was a sinus infection, and I went on my way. I returned to the doctor saying I still felt unwell and was told it was strep. I finished antibiotics and was still unwell. When I went back the final time, a test was done for mono, but it was negative.
I was told to get over it, and nothing was wrong. I felt awful. I would go grocery shopping and feel sore for weeks after. I would feel short of breath while walking to class, and I always had a sore throat and lymph nodes. Sore and achy all over. I had always been prone to afternoon low grade fevers, but it became a daily afternoon thing. I couldn’t sleep even though I was tired all day. I went to a Nurse Practitioner recommended by my mom, and within a few months, she said it was CFS/ME based on the Epstein Barr Virus being in my blood stream (her best theory). It made sense. I had mono, never knew, and I got CFS/ME. I never properly rested, and I was told I was fine.
Around 2018, I had a rheumatologist who told me I had fibromyalgia based on a whim and was young, so I would be fine. I should attend a gym. I cried and asked my NP about it. She did agree with it after doing the pressure point test. It was likely for someone with CFS to have Fibromyalgia. B12 anemia was found out before the fibromyalgia when I had peripheral neuropathy pain. My B12 levels were low, and I had to do weekly B12 injections at first, then monthly injections, and now I do not currently need them. However, I could need the shots again, so I get my B12 levels checked regularly. Finding out I had scoliosis was just as scary as finding out about the CFS/ME. I woke up one morning, and I literally couldn’t move. I could not sit up, get out of bed, walk, or anything. I ended up getting a MRI and X-ray only to be told over the phone “You have a slight tilt in your spine. That’s normal.” Even my NP told me later that no it wasn’t, and if there’s a slight tilt, then it was scoliosis. Another doctor later confirmed that for me a few months later. I was like that for a week or so. It flares depending on my activity level, but it hasn’t been as bad luckily since then.
I say I’m living chronically, because what else can I do?