Chronic Fatigue and NEAD

[Suebez]

Has anyone any advice. I've read that it helps persons with fnd to have a vit B12 supplement and that a higher level should be maintained. Weekly or fortnightly injections in some cases.Diagnosed 15 months ago, chronic fatigue last 8 months. Completely debilitating, sleeping sometimes up to 18 hours a day and when awake fighting the plethora of other symptoms that come with fnd including seizures that become worse when tired. Currently waiting for blood test results. What exactly should we be saying to the doctor when the blood tests come back and are within normal range?. We live in the Midlands in the United Kingdom.

Thank you

[M3rry]

Hi - I'm a neighbour (ish - i'm in Notts)

From my own experiences the UK has one of the lowest 'normal' range of B12 in the world. They will not accept that a higher range might be needed. Personally I had a consultant who didn't bother telling my GP I needed B12 despite the low blood tests until I was anaemic. Now I buy my own. I have been told by a gastroenterologist that you cannot OD on B12 so I happily ignore GPs who claim I don't need it and take it daily and bigger doses when I know I will be doing something potentially stressing.

Make sure the other obvious culprits have been checked - thyroid and blood sugars at a minimum.

The thing I found to help with excessive sleeping is to get your heart racing, I'm not saying a ten mile run - just something to wake yourself up, up & down the stairs a bit faster than you want to should be enough. If it's knackering - go sit in the shade outside (do not get burnt!). Bright morning light is the best thing to help regulate sleep.

Good luck!

[Suebez in reply to M3rry]

Thank you for your reply. I'm pleased to learn that you cannot OD on B12. Will certainly try increasing level regardless of blood test results. We live in Coventry. Too bad it's not quite neighbourly enough to meet for coffee. Look after yourself. Xx