Urgh.

[ktan49]

Does anyone have any tips to help with the fatigue and tiredness? I can sleep for 8 hours a night but I wake up feeling like ive not slept at all! Living on black coffee at the moment other wise I keep falling asleep! Hard when I have to look after my 4 year old son. I try to go out for walks but it's becoming so much harder.. bones and joints are painful. Also my "tremor" or shakes is getting worse through my whole body.. worse in hands.. not flappy hands but shakes non the less.

Still waiting for my "urgent" ammonia level check appointment.... I want this nightmare to end already

[AyrshireK]

I so wish that I could give you the answer to this one. It remains my hubbies major symptom - even today he had a good nights sleep for a change but had his morning coffee at 7.30 cos we were supposed to be going out for the day but he immediately went back to bed and slept till 9am. Got up and had his breakfast and now he is back upstairs snoring away again. Must be really difficult when you have to try and function and have kids but sadly some days this is just the norm.

Weird thing is on his nights when he gets the bare 4 hours he functions better the next day than the nights when he's almost slept right through and of course nothing shows up on his bloods.

Katie

[Hidden]

Ktan, I have no solutions as usual for me....

Just to say I usually only get 2 or 3 hours of sleep a night and then have to sleep in the day. And no it's not the sleeping in the day that causes me not to sleep at night!

After the T/P I still don’t sleep properly - consultant says its the meds and it will get better. Waiting.

Aches and pains disappeared for about 8 weeks but now back again. Odd.

Hope you getnit sorted soon!

Miles

🇧🇧

[ktan49 in reply to Hidden]

Thanks for replies, much appreciated... phoned secretary today and the reason I didn't hear anything was because there was no urgent appointments available.... she said luckily someone else cancelled for 23rd November so I've taken that. Hopefully get some answers then! Anyone else had an ammonia level check and what it involves and result times? Cheers Karl

[tinkabell3]

I've found eating a small healthy snack every 2 hours has made the world of difference for me.. my day is arranged around eating. I have...

8 am. 2 shredded wheat with 100ml skim milk

10 am. Small banana

12 light lunch. Eg 2 wholemeal slices of bread. Low fat filling. Fat free yogurt.

2pm pear

4pm 30g nuts

6pm healthy tea/ fish veg ect

8pm orange

10pm 40g porridge with 150ml skim milk with small banana mashed in for sweetness.

This keeps my energy up so I don't wake feeling tired.

I do around 1700 steps a day. Exercise classes twice a week ( my hep nurse said I needed more food, more exercise, but to lose weight)

I've cut out as much processed food as possible. Low salt. no sugar. Low fats.

In a year I've managed to drop my fibro scan from 18 to 9.

Hope this is some help to you xx