tiredness & fatigue

[estebangrieb]

Hello from an ataxian living in Austria

Well, I've FA and I'm getting more and more tired ... Every day I'm getting out of my wheelchair noon and take a sleep for an hour but in the evening or at night I'm so exhausted that it's getting hard for me to speak, hear, listen and even to sit well ...

Does anybody has a recommendation?

Or does anybody take any pill or drug to battle this condition?

I would like to have more endurance ... Hope anybody can help me ...

Cheers

[wobblybee]

Hi and welcome🙂

I don't have FA but I can empathise with you🙂

Overwhelming fatique from doing basically next to nothing is .....😑

FA is fairly specific, so I hope you receive replies from compatriots 😉

What works for me🤔 The only advice I can give is to 'go with the flow'🙂

Enevitably, some days will be better than others so enjoy them🙂xB

[estebangrieb in reply to wobblybee]

thank you for your answer

[Litty]

Unfortunately my physio explained it well to me that it takes us at least twice the effort to appear normal. I just accept now that everyday I need a 2 hour sleep in the afternoon and if I have a busy day the next day I need a rest day. Sorry but just try to accept it! Rest is important.

[estebangrieb in reply to Litty]

thank you ... well, yes I accept but I thought maybe there is a possibility with a medication that pushes you a little bit ... greetings

[simon111]

Hi my 13y old son has fa I have been reading a lot about thiamine being a potwntial treatment for f

I would advise you to read

Gunnhild lystad blog !!

Really worth reading

Www.Fafysio wordpress .com

[estebangrieb in reply to simon111]

thank you for this information

[Brommie]

Hi, have you tried COQ10? I take a 600mg supplement rvery day and find it really helps my energy levels. I have recently started taking a magnesium supplement for spasticity and that semms to be helping too.

[estebangrieb in reply to Brommie]

well, thank u I will see if I can get the supplement here anywhere in Austria ... greetings

[february]

Dear Estebangrieb, Although I don't have FA (I have Sporadic Cerebellar Ataxia, idiopathic-late onset, unknown cause, progressive, symptoms 24/7) I, like Brommie, take CoQ10 (300 mg am & 300 mg pm) each day and it seems to help me have a bit more energy. You can buy it over the counter, although please check with your neurologist before taking any supplements. My best to you (awesome picture by the way!) ;o)

[estebangrieb in reply to february]

thank u very much for that information