So tired all the time :(

[wendygirl]

I am finding the tiredness very hard at the moment. I work each day but only part time to fit in with my daughters school (she is 9). My husband think I am just being lazy but I really cannot get motivated. How does anyone else kick start themselves? I will try anything at the moment xxx

[Missile]

Please don't beat yourself up, the fatigue is a real stinker- listen to your body. When I feel like this despite the fact I hate doing it and feel lazy, going to bed for a few hours when you can, having early nights and just taking it easy can really help. Also you may want to give your hubby something to read on the condition so that he understands the fatigue is part of it. I also find it helpful to keep my brain active if possible , I work 3 days a week 12 hour days and find it a real struggle and on those days I really can't do anything else.

Good luck, it does pass. Mxxx

[PeteW]

Don't let it get you down.Everything is relative after all.. The fact that you are working and attend to your young daughter is most endearing (and enduring I'm sure).

My fatigue is quite acute in that I'm in bed much more than I'm not. Sometimes 24 hrs a day for many days.

There is no tonic for energy I'm afraid. However I use JUVENON which can help.

[Thurgolady in reply to PeteW]

Hi Willywonka - Im reallly interested to hear more about your experience of Juvenon - its not something Ive heard of before - what sort of difference do you notice when you take it and where do you get it from? thanks,, Gill

Wendy, let your husband have a look at these replies and take him with you to your neurology appointment so he can hear first hand that fatigue is a part of this condition - for me its now the worst thing to cope with. I have found that taking a small dose of magnesium can help me to sleep better. i sleep better if I dont have alcohol. Ensuring you get a good sleep is really important and makes all the difference to me. I think taking HRT was helping but it made me snappy so I gave that up but am thinking of seeing the GP to try another type. I am taking Piracetam which I buy myself and this has helped with my brain concentration/memory problems very much and has improved my energy somewhat too. Ensure you are also taking a good multivitamin and get checked for iron and B12 deficiencies which I think are common in some ataxias and will add to the tiredness. Gill

[PeteW in reply to Thurgolady]

If your really serious about being the best you can be,i cannot recommend a book called "the brain diet" by Alan Logan highly enough. You'll read all about what foods to include and what to avoid and how gut health is key to a healthy brain and ANS. JUVENON is recommended as are many super foods and green foods etc. you'll find JUVENON in the US, online. Also green foods are great from amazon or many many good health stores. JUVENON is also available from the same supplier on "evil bay" which will avoid any customs costs.

I have managed to completely sub diclofenic for turmeric ( the die in currys) which is completely natural. Brilliant anti-inflammatory !

Someone else recommend vit D which is good but I personally think you need the UVB in sun (the bad rays) as well as Vit D.

Ataxia is rare and unique so I find the unconventional works and the conventional doesn't ie the bad suns rays are good for Ataxians . read the book, you'll improve things !

Book synopsis

In this second, expanded edition of the best-selling "The Brain Diet", Dr Alan C. Logan incorporates the latest research on the connection between nutrition, mental health and intelligence. We have heard that poor nutrition plays a role in cardiovascular disease and cancer, but what about other conditions? Is it an underlying factor in depression, anxiety, multiple sclerosis, Parkinson's and Alzheimer's diseases, migraine headaches, ADHD, and more? "The Brain Diet" shows how poor nutrition adversely affects our mental health and success and what can be done to achieve our full intellectual capacity and to help our children do the same. Included are the basics of a brain-healthy diet, brain-healthy recipes, helpful charts and food supplements that enhance our mental function (and the science behind how they work). It offers a revolutionary new way of looking at mental health and intelligence.

[glosman]

Sorry to read your fatigue problems, this probably won't help but just wanted to reassure you that you are not alone as unfortunately fatigue seems to go hand in hand with ataxia. I would recommend that your husband reads up on ataxia & perhaps speaks to your Neurologist or GP to better understand the problems that you face.

I recently took medical retirement largely because the struggle with fatigue & work pressures was getting to much to cope with but one thing that I did find really helped was taking Vitamin D (think it was D12) - this is known as the sunshine pill & can be bought at healthfood stores. This did give me a boost & would be worth a try.

[whiterain10 in reply to glosman]

I've been doing a bit of research and found coconut oil to be very good for the brain dimentia and energy. it's worth a try, put it in your smoothie or in coffee or oatmeal. Just get it into your body.

[wendygirl]

Thank you for all your advice. I think I will get some vitamins especially as the weather will start getting colder soon. Hopefully I will perk up soon !

Wendy xxx

[february]

Dear Wendygirl, Fatigue is part of the nature of ataxia. I believe it's because we work our muscles so hard to do anything, it tires us out physically, at least in my case. Mentally, I'm always thinking and planning how I'm going to do things, and that's exhausting! Anyway, I really admire you for working, as well as taking care of your daughter...,kudos to you! I can't really expand on the good advice others have already given, except to say that I take a Vitamin B-12 (1000 mg) and CoQ10 (600 mg daily divided into 2 doses of 300 mg am and pm), as well as a few other supplements (multi-vit., fish oil, flax seed oil, vit.-D). Recently I heard from others that they take the liquid form of B-12, so I'm going talk with my neuro about that, and possibly switch. Of course, always consult with your doctor/neuro before taking anything! As others have said, have your husband read about ataxia and/or go to your next neuro appt.with you, Also, rest when you can, because you're certainly not lazy! You are not alone in your journey!!! My best to you..., ;o)

[LOVELY_1]

Itseems you have some very good advice, the best is listen to your body and if you feel tired down tools and rest whenever.

[hymek7000]

I am so glad to have read these replies about fatigue as I have problems with my energy levels. I also have other medical problems and was wondering it was them causing my fatigue or a combination of the two put together. The advice about vitamin b and co q10 is what I have already been told. I wish everyone well. I have never had a neurologist so have not asked questions of anyone professional but managed to get some information at the Basingstoke conference which was very helpful.

[wobblybee]

A neurophysio told me to be active, doing whatever, then take a break and rest. When I feel

good I tend to push myself, I get complacent. Not a good idea.

But, when you have children to look after, it's really hard remembering to take care of yourself,

I've been there.

It's also difficult when your nearest and dearest doesn't understand why you're so fatigued all

the time, I went through that too.

If simply relaxing as much as you can doesn't help at all, I know a lot of people have found

coQ10 to be beneficial, I think it's helped me.

Fatigue can hit in 'cycles', sometimes you just have to grit your teeth till it passes. xB

[Litty]

Try to explain to your husband that tiredness is a big part of ataxia and it is not going away. You can manage it though. I do find that a nap for 1 to 2 hours, at least 3 times a week, really helps give my energy levels for the afternoon. Also, if I have a "busy' day and have been out (exhausting), I set aside the next day to recover and accept that I will sleep/rest for most of it.

My neuro-physio explained the situation well. When you have ataxia your body is working twice as hard to do the normal functions, so it is bound to get tired.

Hope this helps : )