Sunday, 22 March 2009

Symptom list

Tomorrow I am going to see my new doctor and so I spent my 'spare' energy this last week putting together a general list of my symptoms in the hopes it will be of help to him.  My memory is so bad these days that there is no way I'd be able to remember everything otherwise.  As I have spent the last 5 years living abroad I'm pretty much working from scratch again here and it's very hard to fill someone in on all this missing information in the stingy 10min appointments that one gets with the NHS.  Anyway fingers crossed it goes well...

Below is my list.  I think it should provide a good benchmark to compare to later as I start to improve.

Summary of Current Symptoms 

Chronic fatigue and miscellaneous symptoms


  • General muscle weakness e.g. too fatigued to eat (with plastic cutlery) without taking breaks to rest
  • Extreme muscle weakness post exertion (i.e. unable to move arms for a day after lifting something too heavy, e.g. a plate)
  • Flaring muscle pains (become increasingly frequent if I start to push my limits or have over exerted myself)

Hyper sensitivity

  • Noise sensitivity –very tiring and heightened further during sinus blockages.  High pitched, loud or compound noises are the worst.
  • Light sensitivity – as above
  • Skin – accidental knocks hurt more than they should
  • Dizziness - on going from lying to sitting or sitting to standing (pressure drops).


  • Inability to multi-task at all – even hearing sounds from two different directions is too much and tires me.
  • Short-term memory recently became very bad – struggle to hold something in my mind for longer than a minute or two.
  • Sometimes struggle to put sentences together (use wrong words) and can no longer do simple calculations in my head


  • Recurring lung soreness, sore throat and ears
  • Problems swallowing food
  • Dry skin getting drier
  • Recurring yeast infections

Current Approach:

Extensive rest – currently resting in bed, in silence doing nothing, for 10 or 11 hours a day just to have the energy to get up and eat meals. 

Switched to plastic cutlery so not so tiring to eat. Also use plastic plates, bowls etc. because they are lighter and quieter.  I drink from plastic cups using a straw.

Glutamine supplementation -helps muscle strength recovery and prevents muscle wasting

Prescription antifungals (was nystatin, now diflucan)

Upper respiratory

  • Chronic sinusitis (sinuses blockages sometimes lead to migraines)
  • Dustmite allergy
  • Hypersensitivity to anything in the air – smoke, dust, mold, pet dander, pollen, any fragrances or chemicals.

Current Approach:

Saline sinus rinse 2x daily

Saline drops/sprays for dry nasal passages

Dust masks

House is vacuumed and dusted every 5 days with Dyson

Air purifier in bedroom

Antihistamines – nasal spray helps when exposed to dust, I sometimes take tablets too

Decongestants and paracetamol – when sinuses block off

Supplementation - natural anti-inflammatory/anti-histamine Quercetin, and Bromelain

Immune modulating herbs to boost immune response to infection and reduce allergies.

Anti-inflammatory diet


  • Food intolerances:
    • Gluten – a small amount causes intestinal inflammation that hurts for 3 days (have avoided wheat since the age of 14, now any gluten is a problem)
    • Dairy – makes sinus congestion worse
    • Sugar – causes yeast infection to flare as well as stomach pain, gas and indigestion (fruit and starches also limited for this reason)
    • Yeast – gives me hives
    • Salt – makes my stomach lining hurt
    • Garlic – indigestion and headaches
    • Alcohol
  • Sensitive stomach lining – sometimes hurts just to put anything in it, even water.  Taking a couple of pain killers for period or sinus pain always triggers this for a few days.
  • Hypoglycemia
  • Nausea (worse when sinuses are blocked or draining)
  • Old constipation problem returning
  • Occasional flare ups of probable diverticulitis (from prolonged bad constipation when growing up)


Current Approach:

Careful balanced diet of home-cooked food to control digestive symptoms, hypoglycemia and yeast infection flare-ups.

Supplementation with high quality vitamins and probiotics. 


  1. Wow, that's quite a list! I hope your doctor's visit goes well. I've been feeling terrible these past 2 weeks and maybe feeling a little sorry for myself, too, but it's amazing to me to read what you deal with every day. Your strength and positive attitude are inspiring. Good luck with the doctor.


  2. Thanks Sue,

    I think it's so important to keep a positive outlook because life is hard enough already without having to cope with depression too and being happy boosts the immune system! I'm really determined to do whatever it takes for me to get better, no matter how hard, boring or frustrating it is. I was at the sort of level of activity you are now and slipping progressively downhill for a couple of years before this major crash so I know that it is really tough deal with whatever level we are at. The key I believe is to be grateful for what we have at whichever point of recovery we are at. This makes it easier to keep within the bodies activity safety limits.

    Last week I was grateful that I wasn't in the constant nerve and muscle pain I had had at my lowest. This week I'm grateful that I don't need to rest quite so intensively. And of course one of the main things I'm grateful for is that my mum is able to take care of me despite the fact that she is at retirement age - I would doubtless be in hospital by now if she were not here as there have been times in the last few weeks I have had to be spoon fed.

    Take good care of yourself - I hope the herxes are over for you soon!