Fatigue

[Jay1972]

I have SCA (unknown variant - awaiting blood test results!) and one of the things I'm really struggling with is fatigue.

I'm still working full time and I have a fairly sedentary desk job but I've noticed of late that as the week wears on, my level of fatigue on a daily basis greatly increases! It's like I start the week on a full tank and it's pretty much gone by Wednesday afternoon! I try to relax as much as possible at weekends as I know the week will be hard.

In addition to general tiredness, my arms and legs feel achy too so much so that if I'm walking I have to stop to let the ache ease and the same when typing - I've had several stops whilst typing this!

My employer has been really good and I've shortened my days as much as possible without incurring a financial loss.

Does anyone else experience this and if so, any sage advice?

[maber]

HELLO JAY , SORRY FOR THE CAPS EYES ARE NOT TO GOOD . I ALSO HAVE SCA (UNKNOWN ) AND I WAS GETTING SO TIRED AND WAS TOLD IT WAS THE MEDS BY MY FRIEND WHO THINKS SHE KNOWS EVERYTHING LOL , I HAD A BLOOD TEST BY MY DOCTOR AND WAS FOUND TO HAVE VERY LOW IRON LEVELS .

AFTER GETTING IRON FOR A FEW MONTHS IT WAS STILL LOW EVEN IF I WAS FEELING HEAPS BETTER , SO WAS GIVEN MORE . I HAVE NOW STOPPED TO SEE IF THE BODY IS HOLDING THE IRON SO FINGERS X . SO MAYBE THIS COULD BE THE ANSWER , IT DID TAKE AT LEAST A MONTH OR TWO BEFORE I NOTICED AN IMPROVEMENT. IT WOULD BE WORTH A TRY .

GOOD LUCK FROM MABER

[cocoa in reply to maber]

I too have ataxia of unknown cause, although I do know it is genetic.

When I attend the Ataxia Clinic I am told a lot of my symptoms are not connected to ataxia but we all seem be suffering the same problems. Fatigue is my biggest problem and I too have found out that my ferritin levels are low. I see a nutritionist for advice privately because my gp tells me all my blood test results are within range.

It seems that we have to fight for everything and when we are fatigued that is not always easy.

[Benedict]

Hi

l have suffered some discomfort in my legs but know I no of known cure

Benedict

[petecelt29 in reply to Benedict]

Hi Ben.

Do you have neuropathy in your legs.? I have.no cure I'm afraid, you just got to live with it.

I also have idiopathic ataxia.no cure for that.

I just get on with it.

What's the alternative?

Lol.😂

Peter.💝

[PeteW]

Hi, I too have ICA and am fatigued. I seem to be better when i get lots of sun and worse when I eat junk. Vit d supps dont help me. Astaxanthin supps are worth a try.

[Jay1972]

Thank you all for your helpful replies!

It seems as if Iron supplements may help so I'll give that a try. I already have vitamin D supplements as my last blood test showed I was deficient there.

My boss, trying to be helpful, suggested trying to get an early night - wish it were that easy!

[february]

Dear Jay, I think tiredness and ataxia go hand in had, unfortunately! I was diagnosed with Sporadic Cerebellar Ataxia eleven years ago (unknown cause/symptoms 24/7). I retired from my job as a social worker (28 years) eight years ago, due to my ataxia symptoms progressing. My theory, at least for me, is the way I use my muscles and have to constently think about my movements to keep myself upright and prevent falls...,it's exhausting! You work full-time, kudos to you, no wonder you're tired! I exercise for strength and balance and try to eat as healthy as possible, as this helps me have more energy. Stretching my muscles each day helps me with general aches and pains. Try to rest as much as possible (while at home) and get up from your desk every 1/2 hour to walk a bit and stretch (if you can). Drink a lot of water. Make sure you're getting enough sleep each night, at least eight hours, more if you need it! My best to you... ;o)

[Jay1972]

Thanks February! I do try and move around at work but it's striking that balance between doing enough and doing too much!

It's exactly as you describe - so much effort goes into not falling over and trying to convince my legs to do as they're told that there's not much left!

Incidentally, I had an Access To Work assessment yesterday and the assessor has recommended a range of equipment to make my working life that much easier - some things I hadn't even considered! So hopefully, that combined with taking Iron supplements will have a positive effect (I'd cross my fingers but don't have the energy!)

[suzymoo2]

I have FA and retired at Xmas after 21 years. I cut my working week from 39 hours to 25 hours because of extreme fatigue (some days I struggled to keep my eyes open!) which lasted about 2 years, then enough was enough! I'm still just spending my days pottering about, doing all the stuff I was too tired to do before, plus I look and feel so much better. Of course this isn't an option for everyone so good luck with your choice!

[wobblybee]

Sometimes tiredness washes over me like a wave, experience tells me to

lie down and I can usually be fast asleep for a couple of hours. There's

obviously a deep need for sleep, I feel so much more alert on waking xB