Second hospital appointment…

So my second hospital appointment is looming at University College London tomorrow. If you follow me on social media you may know I came out of the last one feeling a little desperate, let down and disbelieved. All of the fears of a spoonie realised in one visit. So tomorrow I receive the results of yet another blood test (I am usually seronegative) and to be patronised by a doctor.

Lists are always good so I’m going to make one here of my symptoms to take along.

  • Sore throat, muscle aches, flu like symptoms
  • Difficulty in controlling temperature
  • Extreme fatigue
  • Joint aches like acid burning inside then inflammation around them
  • Acute knee pain and swelling resulting in an arthroscopy to try to control the swelling. This has been controlled with cortisone injections and prednisolone. It has meant in the past I have been unable to walk for periods of up to 2 months and find moving around my home problematic. My knee is still sore and doesn’t track properly.
  • Muscle aches and spasms. Tendentious and displaced joints i.e. ribs and vertebrae
  • Extreme chest, neck and shoulder pain leading to complete immobility for up to 2 months at a time. This also means I cannot drive and am isolated. I have been diagnosed with Joint Hypermobility Syndrome and see a specialist physio for this. I have also had shoe inserts made to help with the position of my feet and acupuncture and reflexology to manage the pain.
  • Migraine or cluster type headaches that disturb my vision, make me unbalanced and nauseous. I cannot work or drive when they happen and I typically cannot leave the house for 3 or 4 days
  • Nausea and vomiting. I go through phases of this where I will vomit uncontrollably for 12 hours or more. Often this is followed by a period of joint swelling and feeling very poorly. I feel nausea most days and take medication to counteract this.
  • Eye sores and dryness. Over christmas I had an ulcer ob the inside of my eyelid.
  • Ulcers in general. These are mostly in my mouth and often can reach the size of a penny. I can have up to 30 at a time and they bleed. They can also appear on the outside of my mouth, in my nose, eyes and vagina. They go away when on high dose prednisolone.
  • Dry mouth and sore tongue
  • Insomnia and broken sleep
  • Hands and feet that go extremely numb extremely quickly in the cold and I constantly seek heat for.
  • ‘Thick’, hard swollen fingers that won’t bend.
  • IBS and stomach cramping. Intermittent diarrhoea and constipation. Lower back pain. Pain going to the toilet that gives me pins and needles and want to pass out.
  • Extreme heartburn and tummy irritation
  • Rashes on cheeks and chest and acne.
  • Brain fog and memory problems
  • Depression and Anxiety

So there it is, maybe I missed something so I may be back…


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