Here's my symptom list for last rheumatology appointment in March - the order and severity have changed but all are still pertinent and at least this shows that I'm not finding a disease and matching the symptoms accordingly. Which can easily happen with multiple symptoms I think. The main changes have been that sweats are throughout the day and started before the Prednisolone but do worsen at higher doses. The facial numbness and tingling have worsened and the chest issues have gone but the feeling of fugue like fatigue and dramatic slowing down of breathing continues plus I notice now that I wake every few hours to pee and have a startled feeling of gasping for breath often.

List of main symptoms in order of severity – March 2015

• Jaw ache, nose and tooth neuralgia – trouble eating/ chewing/ muffled hearing

• Dizziness/ vertigo/ disorientation – leading to three bad falls since
Christmas

• Severe neuropathic pain in legs and arms – prickly wet skin sensation
reaching up into groin area. Bone pain (like toothache) in feet, ankles, shins, knees, hands and wrists and elbows. Lightening bolt pain in knuckles and a wrists and jaw and ears.

• Longstanding (2 years) loss of sense of taste and smell (100%)

• Chest tightness / crushing pressure and pain – breathlessness – annoying cough, chest wall tenderness. Night waking with jerks and breathlessness.

• Frequent nose bleeds and sores inside nostrils – dry, crusting within nose and neuralgia around sinuses.

• Loss of appetite and nausea - weight loss - intermittent intense upper abdominal discomfort/ pain - pain in bladder, womb and pelvic area.

• Dry eyes

• Increasingly widespread morning stiffness – sometimes lasts all day

• Poor dexterity and joint instability plus shooting pain and weakness in fingers, and wrists – stiffening of joints especially in middle fingers

• Issues with temperature regulation – toes often whiten and feel like ice blocks while other parts burn. Widespread chills. Difficulty getting warm or cooling down.

• Flu-like un-wellness/ slight fever and intense fatigue which worsens as the day progresses and after travel or activity

• Backache and locking in lumbar region and backside. Pelvic floor numbness

• Night sweats or else complete lack of sweating after exertion



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