Finally!

My GP says I definitly have chronic fatigue syndrome! Plus as my mood is ok, not depressed, to cut down the main antidepresent, Mirtazapine, to see if that relieves some of the extreme fatigue. More blood tests Monday to check thyroid function and the usual range of levels. Am to go back in a month to see how mirtazapine change going - but a great breakthrough finally.

A number of events led me to write out my symptoms, how they affect me and what I try to do to have some quality of life. At a regular job centre interview they assumed my main problem is anxiety, at the colonoscopy clinc that I have COPD - tests last year showed lung function fine - plus being treat as a moron by various consultants, I thought WTF is going on here???? So this is what I wrote:

"Reason for visit: to review all symptoms rather than consult re individual symptom flare up with the goal of improving overall health in order to improve my quality of life which is currently very poor.

For example if I add one extra activity to usual routine such as changing the bed I end up semi-comatose by 6pm unable to keep eyes open, too tired to cook, think etc etc rarely leave house for anything apart from shopping, coffee at the Café is a rare treat. Would love to be more active, develop friendships, and consider work eventually. Now I am sometimes even too tired and incoherent to chat online with my daughter- without a drink in sight!

Symptoms - worst first

Fatigue - physical and mental
Example – emulsioned one wall to finish living room before Xmas, took a full week of short sessions as could not sustain activity more than ½ hour first day reducing over subsequent days. Meant no energy for cooking.
Brain fog, struggle for words - names especially. Bad days unable to start Guardian crossword (when at Uni was reknowned for completing in under 5 mins) or string sentences together. Very poor at dates.

Cough, mucous, post nasal drip – pretty bad, using mountains of toilet roll though mucous is clear unlke hay fever runny nose.

Irritable bladder – frequency and urgency, very noticeable on a morning. Fizzy wee

IBS – stopped mebeverine after phone consultation, back on this week as pain, wind, diarrhoea back

Headaches - migraines, mainly visual & pain left temple/ eye, weird semi anaesthetic numb ache/ hot sensation same area. Temperature type headache. Poor sleep headache.

Muscle/ joint pain - feels like layer under skin bruised

Blurred vision – with and without headache, worse when tired.

Noise & light - rattle my brain. E.g. Oncoming dipped headlights a big problem. Increased sound on adverts hurt.

Sleep – nortryptaline helped immensely but still wake 5 or more times a night, wake tired and unrefreshed.

Mood – OK, had a few very low weepy, irrational days in Dec but ate cows cheese 4 days running (craving) – stopped cheese, ok within 2 days.

Faulty “thermostat” – hot when other cold and vice versa. Extreme clothes & bed drenching sweats as mentioned last visit stopped after antibiotics.


Weird stuff

Tight, uncomfortable band at top of stomach, pushing up under ribs esp right side. Worse after eating, however little.

Arms & legs gone very thin, Susie calls me chicken legs now. Stomach distended.

Eyebrows & pubic hair disappearing, bit young for this?

Eyelids discoloured brown – used to them being black

No libido
Salt craving

My coping strategy

Pace myself

Stay mentally active – horse racing website in hope of online work again in future. Crosswords, scrabble, read though can now take weeks to finish one book compared to previous prodigious consumption.

Diet – dairy free – doing this in 199? Was turning point for extreme IBS etc. All home cooked, bulk cook and freeze when can for days when cannot cook.

Goal set - not greatest lover of housework but try to add an additional job that will give sense of satisfaction. Eg today cleared leaves off path for for 10 mins by the end could barely llift leaves into compost bin.

Exercise – introduction (approx 12 mins) to old aerobics video 2 –3 times a week, any more and wake up feeling like flu starting next day. Walk - length of High St often about the limit before feels like wading through treacle.

Try not to go back to bed in the day

No alcohol week days.

Cut down smoking

Note: I think I was able to lead a normal life until 1991 despite severe migraines (full blown 2/3 days dark room/sick jobs) and IBS.

Possible turning points: 1990 I sat my finals at Durham, GP prescribed beta-blockers to avoid migraines disrupting them, passed 2.1 BA Hons. Awarded Durham studentship for postgrad degree. Autumn term strange red raised rash bottom both legs, unnamed virus diagnosed. Wading through treacle feeling and extreme fatigue started, I told GP thought I was depressed did then become suicidal & hospitalised and have only had some short periods of feeling well since then. "