Does anyone else have problems with fatigue? I'm finding that I'm exhausted by 9pm and everything else gets worse at night: dizziness, balance, walking, ect. Even if I have a "good" day in terms of symptoms, I find that I always get my weird dizziness/shifting sensation at night, and it's worse when I'm physically tired. Any tips on how to handle this? I'm hoping that I can increase my endurance so I won't get tired so easily
Yes I do have problems with fatigue. The only way I can do anything at all about is by exercising. (For me, that's exercise bike, and treadmill.) It doesn't stop it completely, but it does help.
The only other thing is to have a day or time (depending how bad things are) which I rest as completely as I can, brain, and physically.
Most days I have a nanna nap, usually during the afternoons, mostly around 20 mins helps. Otherwise I don't have energy to prepare my evening meal, let alone eat it.
I have the same problem. after about 8pm for me I walk like I am very drunk. My speech is more slurred than normal and my sight gets worse. If I have a particularly physical day I know that I will pay for it in the next days. For example we took the grand kids to a museum and meal out the other day. In total we walked 3.5miles over the period. That was Friday. I was out sitting around with a friend for 2 hours on Saturday. My wife is about to go out and I am going to spend the morning in bed totally wiped out.
I am only 58.
I am 66. I went to the neuro on Thursday for treatment for dystonia. I was away for 12 hours because of travel times etc. I had Friday at home and had three nanna naps. Saturday I was tired, but recovering. Today has been busy again, so tomorrow I am having another day at home. I would like a week to recover......
Once I feel half way recovered, I'll be back on my exercise bike.....
I have terrible problems with fatigue. I have even been diagnosed as having Chronic Fatigue Syndrome, but I am coming out of the worst of that, but still have to go to bed early and am asleep by 9.00pm. I then wake at 2.00 for a bathroom trip and am all over the place. Thank heavens for the grab rails that have been installed. I am so dizzy I often fall off the loo. There is no cure, everyone I know with Ataxia has fatigue. I keep thinking an exercise bike might help, making me stronger, but when would I use it. I am spending all my time writing a book. And as for going for a walk, well, the world gets confused, my feet don't work properly, I can go about 50 yards before the brain says "Now what are we doing? Lets get all tangled up. So you see, you are not alone. My sympathies go out to you. Take care and get yourself safe in your home if you haven't already. My memory goes too. Or maybe that is being 65. I don't know. Good luck though, and will be thinking of you all.
I agree with all the previous responses. It does mean that you have less hours in the day of course but we can only aim to make those hours quality time.
I find exercise has to be done first thing or I dont get round to it at all. I alternate days with passive pedaller and wii fit but... every day I do core exercises lying on the bed before I get up.
I never do chores before I get dressed and ready to face the day as after the chores I have to rest. I do this with hypnotherapy sessions with my MP3 and again after evening meal. I like to take a stroll outside either morning of afternoon but sometimes I dont have the energy.
If I do keep going on adrenaline and willpower, I too pay for it the next day and sometimes longer!
Yes, aging takes it's toll too.
Patsy CA/72/UK
Totally agree !! I am 52 and just spent 1 week on Norfolk island with my 90 year old mum I love my time awya but itjust shatters me. I am having rehab 3 times a week 3 hours a day and I can definitely see an improvement but it is like a full time time job
breddersboy said:
I have the same problem. after about 8pm for me I walk like I am very drunk. My speech is more slurred than normal and my sight gets worse. If I have a particularly physical day I know that I will pay for it in the next days. For example we took the grand kids to a museum and meal out the other day. In total we walked 3.5miles over the period. That was Friday. I was out sitting around with a friend for 2 hours on Saturday. My wife is about to go out and I am going to spend the morning in bed totally wiped out.
I am only 58.
Hello all. I agree with above answers, as my ataxia progresses I have to take my nap at 4:00 each day.
I am 58, and have found that if I feel good and are having a good day I pay for it for days afterward. I am becoming a couch potato! My friends asked me what I do all day, and I sometimes feel that I need to justify why I am so inactive. Why is that? People need to have ataxia for just one day to understand what we go through every day to get anything done.
:):) What an expression Suzi..COUCH POTATO. Never heard that one before. BUT..know exactly what you mean:):)
yep , im 31 so wiped out by early afternoon. I didn't expect this happening. I always had always walked " drunk " at night with no idea why I don't drink. but it gotten worse, I fall more when tired. and fatigued a lot lately, had doctors appointment , friend drove, about fractured finger( from falling off toilet) than my friend took me out to dinner. went strait to bed when I got home at 7, fatigued most yesterday! you are not alone!
Sure do agree with all of you. I need a nap around 4 pm, then I can make it until 10:30. The days I do yoga I’m really fatigued. I’m 72 and I ve had this for about 18 years, but with aging it seems worse. Just rest when you re tired and stay safe!
Thanks for the responses. I've been riding a stationary bike to try to improve my endurance. I found that in the last couple of months I've increased the amount of time I can ride the bike, but my endurance while walking has decreased. I'm 21 and a university student and I'm starting to need to take a break when walking the very short distance to my classes. I wonder if trying to condition myself walking on a treadmill will improve my walking endurance?
I have ton's of fatigue and am always looking for natural ways to beat it. All these thoughts are great, but I have to add this too!
But when I'm consistent (meaning I don't think it's gone and stop doing these things it really seems to work for me). I just need to remember to do them all the time so they will work on a regular basis.
I make a shake in the morning which really helps alot!
High Energy Breakfast Shake
Prep and Cook Time: 5 minutes
Ingredients:
- 1 medium banana
- 1/2 cup whole strawberries or blueberries
- 1-1/2 cup of Breeze (coconut milk, almond milk w chia seeds)
- 2-1/2 TBS almond butter
- 2 TBS ground flaxseeds
- B12 liquid
- 1/2 scoop of Fatigue to Fantastic powder
- hand full of greens (Kale, spinach, arugula & chard)
I've been constant lately and it has made a world of difference for me having raw, live foods give me energy! Who knew right? :-)
Everyone else here also have great thoughts!
Try everything one at a time for a few weeks to see what works for you. Everyone is so different!
Hi Irene,
I'm 57 years old and have ben diagnosed with acquired trunkal ataxia 18 months ago...I had hydrocephalus and developed ventriculitus with 2 bouts of aspirational pneumonia. I have therapies twice a week for the last 6 months since coming home .My physio's stress core strength stability...I was like a baby...I couldn't even sit up raise my arms, when I started, they started off putting me on a 'tilt table, things have improved greatly but it sometimes seems you have to work so hard, just to stand still, stop and you go backwards. Keep up the hard work and I'm sure things will progress....good luck
When I could not keep up with my yard work and weeding I tried to get prescribed low dose stimulant and my doctor said he could not prescribe because I had emphysema which I was never diagnosed as. When I told the doc I never had this disease he told me I did because I used to smoke. So no help there.
I get up at 8 AM, and by one o'clock, I am just exhausted. I sleep about 13 hours a night.
Hi,
Yes... fatigue is a big part of SCA. One thing that definitely helps is working out. One of the things I do is wear one of those rubber pool floats around my midsections. Then just "run" up and down the lap lane. It really helps with balance because you have to use your arms and legs to prevent yourself from rolling forward or backwards. I do have issues with sleeping at night. There are sedatives but issues with that are: 1. not a natural/full rest so you wake up basically like a hung over person, 2. sleep on your back, 3. the sedatives are addicting which is why I don't take them. Work out... helps you sleep and it helps with endurance issues.
Our daughter w/ SCA is getting increasingly more fatigued. She used to come home and crash for 45 minutes to an hour after school, now it is more like 2 to 2-1/2 hours (she is 10). Our Neuro said that hypersomnia (fatigue) is a common symptom of SCA. He prescribed a stimulant for her to take in the AM to at least help her get through her school day. Since she also has issues with swallowing (dysphasia), he prescribed it in a liquid form.
I remember something else that I do helps me allot. I have the Wii fit plus that has me do some of the exercises with my eye's closed so I learn not to depend on my eye's for the space around me. Even when they don't I challenge myself to do some exercises with my eye's closed. It's not that easy but little by little challenging myself has helped me allot having to maneuver in the middle of the night if I have to get up and go to the bathroom. I still find it challenging in the dark but allot less. Try that once in while and try to retrain your brain some. Because the darkness sure isn't an ataxian's friend! :-(