Help please

[weegiz12345]

Can anyone let me know if they get tired very quickly, most things make me very tired. I have SCA 2 and over active thyroid also so am not sure if it’s my thyroid. I have all the usual symptoms balance, coordination but recently get tired. I sometimes have what I call fuzzy head too first thing in a morning. Any help greatly appreciated.

louise x

[HarryB Administrator]

Hi Louise

As you know fatigue is a significant symptom for people with ataxia. However it can be a symptom of other things, for example thyroid problems as you say.

If you have noticed a sudden change in your levels of fatigue that are significantly different from the level of fatigue that you usually experience, I would suggest making an appointment with your GP to get your bloods checked. Your level of fatigue might be ataxia-related but equally it might be being caused by something else that needs to be treated.

A long time ago now I started getting much more tired than I was used to. I though 'oh, it will just be the ataxia.' I mentioned it to my neurologist at the time who did some bloods and discovered I was iron-deficient. After a course of iron supplements I felt much better and my levels of fatigue returned to how they were before I was iron-deficient. It was a very valuable lesson to me to not assume that every symptom I experience is necessarily ataxia-related!

Best wishes

Harriet

[weegiz12345 in reply to HarryB]

Hi Harriet thanks for this, I don’t know if you remember talking to me about 3and a half years ago I phoned your home about retiring. We’ve been retired almost 3 years now and never looked back. I’ll make an appointment with my GP. Will let you know how I get on. Thanks.

Louise x

[HarryB Administrator in reply to weegiz12345]

Of course I remember! It was a pleasure and I am so pleased retirement is working for you.

[PatsyIpswich]

Yes, I was diagnosed with CA 20 years ago and one of the first pieces of advice from neurologist was to rest for an hour after lunch. Sometimes mid morning too.If you can't sleep listening to hypnotherapy on YouTube helps.

Stay safe and don't forget to smile x

[weegiz12345]

Don’t really feel like smiling much Patsy most days. Sometimes it seems like ataxia rules my life, you seem very accepting of ataxia. Any advice?

[Eunseoc]

I also have sca2 and my symptoms I feel most biggest one is fatigue. Symptoms are various not every sca suffers have fatigue

[weegiz12345]

Thank for your reply much appreciated xx

[february]

Dear Harriet, l was diagnosed with Sporadic Cerebellar Ataxia 20+ years ago. All the genetic testing I had did not reveal a cause. Then, in 2017, I had genetic exome testing and found out my Ataxia was due to Niemann Pick C disease! Anyway, I'm ALWAYS tired!! But, I would suggest you see your GP if you have a thyroid problem, as that can cause fatigue too! My best to you...

[weegiz12345]

Thanks for the advice am seeing my thyroid consultant in Feb will mention it then xx

[coat2003]

the thyroid doesn't help.fatigue, i suppose common i am sca 2 inherited and battling with tiredness.listen to one's body.Annoying as it is, the winter season,the lack of light, natural daylight i am on about...have a blood taken esp.out of winter, for the lack of vits.it pinpoints all you arte MIISSING.good luck and stay positive!

[weegiz12345]

Thanks for your comments xx

[penelope2]

Yes as others have said both ataxia and thyroid problems cause fatigue, tiredness is not the same as fatigue for which "pace or bust" is relevant. We ataxians need to keep our blood sugar levels in balance. This does not mean eating sugary rich food, quite the opposite. Try protein and carbohydrate snacks mid morning and mid afternoon. Protein foods include meat, nuts and seeds, eggs. Include protein at each meal, focus on veg rather than fruit and don't drink caffeine to keep going.Also the 'foggy' brain you mentioned could be from eating gluten, which will also cause fatigue if this is the reason for you. Try cutting right down on gluten containing foods, if this makes a marked difference for you then eliminate gluten entirely for a few weeks and if you have a gluten sensitivity you might even find the ataxia symptoms improve.

A lot of information here so take one step at a time to be sure you find what helps you. There is no point in asking doctors for help in this as most do not understand this sort of functional therapy.

Good luck.

[weegiz12345 in reply to penelope2]

thanks for your comments, brilliant advice xx

[coat2003]

get under co ntrol YOUR THYROID.Get tested and take it from there.yes sca2 is tiring, the trick is to RELEARN all you do, cleaning what you can and ask for help!

[weegiz12345 in reply to coat2003]

thanks for your advice xx