1. Headache: My baseline pain level is a 4, with a constant feeling of pressure in my head. At times, the pain worsens to a more debilitating headache. I become hypersensitive to light and sound, and I need to rest for quite a while to have any relief from the pain. It does not improve with massage therapy or pain medications.
2. Fatigue: I require 12 hours of nightly sleep plus frequent naps. I spend much of the day in bed, but I am often able to work a couple of hours in the afternoon. I have more energy at nighttime, if I've rested during the day, so that is when I exercise, if possible. Overall, I feel very lethargic.
3. Neck/back pain: I have regular neck pain, as well as frequent pain between my shoulder blades and in my lower back, always within the spinal region. My head often feels very heavy. I also have developed increasing mobility since my fusion to C-4. I have a fairly normal range of motion now. It feels like my head is no longer being supported by the fusion, like it's no longer sitting on my spine the right way. It just feels off. I also have severe muscle spasms and painful knots in my neck and shoulders that always return soon after my frequent massages.
4. POTS symptoms: I have frequent tachycardia and low blood pressure spells. When my blood pressure is low, I can barely move. I am not able to walk very far most of the time, despite treatment and regular exercise. I have palpitations and arrhythmias.
5. IBS symptoms: These have developed in the last couple of years. I have severe abdominal pain and bloating after eating as well as chronic constipation. These symptoms continue despite treatment and drastic restrictions on my diet.
6. Signs of elevated intra-cranial pressure: sore throat, dripping nose, earache, feeling of fullness in the head with pulsing around the area of the decompression.
7. EDS symptoms: Joint pain. My knees and fingers hurt in the cold. My shoulders and hips can hurt anytime, sometimes restricting activity. In addition, my spine causes me the most pain.
8. Signs of cranio-cervical instability returning: nausea in waves when I am upright; choking on food, water, anything.
