FATIGUE

[piglet3]

Does anybody suffer with fatigue. I’m fed up with people saying and thinking I’m lazy.

[edfosho]

All. The. Time.

It's horrible, but we just need to find out ways to make things easier (even the smallest of tasks). This way less effort is used, and there's more free for the things we want to do.

An occupational therapist can help with fatigue management tips. Reach out to your GP for a referral if you haven't already.

[piglet3 in reply to edfosho]

Thanks for your advice.

[wobblybee]

🙂 You are definitely not lazy.

Most of us cope with fatigue, and it’s mostly caused by the amount of concentration we use to simply move around and stay safe. Of course poor sleep can also be a cause, so it would be useful to have a chat to your GP.

Many people with neurological conditions such as ataxia report feeling extremely tired and lethargic (lacking in energy). It's thought this is partly caused by disturbed sleep and the physical efforts of having to cope with the loss of co-ordination. A physiotherapist may be able to help you increase your stamina levels, and an occupational therapist can advise you about how to adapt your daily activities to help you cope with fatigue better.

Not everybody wants medication but..there are options if necessary..

Fatigue

Amantadine, Atomoxetine (Strattera), Buproprion (Wellbutrin), Carnitine, Creatine, Modafinil (Provigil) or Armodafinil (Nuvigil), Pyridostigmine, Selegiline (Eldepryl), Venlafaxine (Effexor), Desvenlafaxine (Pristiq); SSRI’s (Selective serotonin reuptake inhibitors), SNRI’s (Selective norepinephrine-serotonin reuptake inhibitors) –classes of drugs for anxiety or depression that may also help fatigue.

ataxia.org/wp-content/uploa...

[piglet3 in reply to wobblybee]

many thanks.

[wobblybee]

🙂 There’s no easy answer when it comes to coping with fatigue..it’s your body’s way of forcing you to pay attention, and rest. Other people can sometimes be very judgmental without having a proper understanding of the situation..and it’s best to ignore this attitude and focus on how best to manage fatigue 🙂

[piglet3 in reply to wobblybee]

thank you your words are reassuring.

[HarryB Administrator]

Dear piglet3

Fatigue is a very real part of ataxia. You are certainly not lazy.

Ataxia UK have a leaflet on fatigue and ataxia written by the Sheffield Ataxia Centre. Unfortunately I cannot upload documents here. If you would like a copy please email the Helpline at Ataxia UK (help@ataxia .org.uk) and we can send one to you.

Best wishes

Harriet

[piglet3 in reply to HarryB]

thank you for your kind words.

[monstrous]

Yes I am constantly tired and at times can't be bothered to do anything.

[piglet3 in reply to monstrous]

The fatigue isn’t a constant thing for me. The problem is that I am a housewife and I feel responsible for getting a meal on the table,ironing , and cleaning etc.

Sometimes I don’t feel I have the energy to do this every day

Thanks for your reply.

[suzie44na]

Hi, Yes I am always exhausted, it awful. My neurologist in Sheffield said fatigue is part of ataxia, when I was telling him. People do tend to judge people and don’t really understand what is going on internally. Our muscles are always on the move. We are not lazy at all. My next door neighbour said that to me once, so I told her of all my problems. Wishing you all the best,

Suzie

[piglet3 in reply to suzie44na]

Thanks for your reply. It’s nice to know that I’m not alone in feeling this way.

[PatsyIpswich]

Exercise before breakfast can help and a nap after lunch.Calling anyone lazy is very rude.

I hope l haven't duplicated this. It's my third attempt at posting. Stay safe and don't forget to smile. Patsy x

[piglet3 in reply to PatsyIpswich]

thanks very much patsy.

[2hot]

Yes! It comes in waves and sometimes it feels like I am too tired to breathe. I have had fatigue for the past two days so I can sympathise. Short naps and then doing something easy that I don't need to think about seems to help.

[piglet3 in reply to 2hot]

thanks for the tips.

[penelope2]

Agree with others, fatigue is very real with ataxia. I try and do stability, vestibular and walking exercises every day, this will make me fatigued so I space them out and on a bad day I don't do any. Remember to be kind to yourself, pace or bust balanced with use it or lose it, are all to be mindful of. We are all different and to be honest I've found that no amount of physio has helped with fatigue, it is all about doing what is right for you and what makes you feel as good as you can.What can help with fatigue and tiredness is balancing blood sugar levels, this does not mean eating sugar!

Healthy eating with complex carbs, protein and veg and fruit in proportion can help fatigue but it can take a few days to kick in. There is lots of info on the Internet.

Realistically if you are looking after your family then batch cooking and freezing works. Maybe a chore rota so that everyone does their bit to help. Sit them all down and say how it is for you because its really hard to imagine what Ataxia feels like 24/7.

Good luck.

[piglet3 in reply to penelope2]

thanks your advice is much appreciated.

[slipsandtrips in reply to penelope2]

Really good advice.

[rideabike]

I do have fatigue. Wondered which issue was causing it (aging, heart or something else) but suspected ataxia. It's a necessity to take some vitamins and supplements and for myself, is the only way to keep going....Still, a good sleep during the day rejuvenates. Ataxia fatigue is way worse if I do a lot of physical work like gardening. Thanks for all your replies...guess I'm normal. Ha!

[piglet3 in reply to rideabike]

many thanks for your reply.

[rideabike]

Just asking...do you shake when you've overdone it? I push myself but when the shaking starts it's time to quit.

[PatsyIpswich in reply to rideabike]

Yes same here x

[piglet3 in reply to rideabike]

I don’t shake but if stood too long my legs can begin to tremble. This is a lot worse if I am feeling anxious.

[rideabike in reply to piglet3]

I understand that....shopping is a nightmare for me. I try to get it all done but it's not enjoyable anymore because of anxiety and fatigue. I'm finding this is a comforting thread because we all want to feel approval in some way when we do as much as we can. It took a long time for me to give in and sleep when I need it but I approve myself more often.

[slipsandtrips in reply to rideabike]

👍 recognize d

[rideabike]

Another thought....You know what things are like when they're out of order like housekeeping, taxes, paperwork, etc.? Imagine a store where everything is in the wrong place. Shopping would be stressful! A'taxia (without order). The body has to somehow find order inside it every day so it can function....no wonder it's tired. Eyes, brain cognition, proprioception (where we are in space), legs, hands, moving uncoordinated. It's hard to explain to people. We understand so I don't apologize for sleeping 2 hours in the day time and then sleep well at night. They're probably just envious. 🙄

[piglet3 in reply to rideabike]

I’ve never thought about it like that before, but you’re pretty much correct about the disorder that ataxia causes. It affects every aspect of life.

[PatsyIpswich in reply to rideabike]

Thanks for putting it into words. I find it difficult but you have it spot on. X

[rideabike in reply to PatsyIpswich]

💕

[nigelrheath]

Hi Piglet

This is a very comforting thread and contains many useful tips and tricks. I have found the fatigue has got better as I get used to living life at a slower pace. A lot of fatigue is caused by thoughts about what we used to be able to do. From my time as a relationship coach I would advise getting the family to look at the unwritten ‘contract’ as to who does what, as suggested earlier and draw up a new one with chores shared more equably. My wife now takes on many ‘blue’ jobs and I help where I can. (Mostly by keeping out of the way!) I use my attendance allowance to pay for a cleaner every two weeks, an occasional gardener to help with heavy lifting and a monthly massage for her. (To keep her fit!)

The responses show you that this is a daily problem with ataxia and needs to be addressed within your family, or they will assume you are coping.

Nigel

[piglet3 in reply to nigelrheath]

many thanks for your reply.

[chelpet]

I have a siesta most days.

I also find mindfulness meditation very helpful

[piglet3 in reply to chelpet]

many thanks for your reply.

[7151]

I am no very very tired i could sleep all thé time ! Do you think that is to do with ataxia ?