Fatigue

I find that I just have no more energy and am wondering if anyone knows of ways to boost the energy, I just need to be able to weed and do minor things but am really stuck.I asked my doc a couple of years ago about low dose stimulants and got shot down because I have copd which meant emphesyma problems. Dont ever tell a doctor you ever smoked or they can use it against you. Im 79 yrs oldand find it almost impossible to get prescribed meds if they are abuseable.

This may help. I have Ataxia and Chronic Fatigue Syndrome. I am 65 and have been diagnosed for over a year but have had the symptoms quite a few years longer. I discovered that drinking a cup of proper ground coffee black if you can and strong, helps me to overcome the dreadful feelings of total exhaustion, headache and general disability. People may come down on me, but I know the caffeine helps me - I only have one cup a day but it definitely helps.

Maybe try the energy packed green smoothies like All Day Energy. I am 73 and it keeps me energized.

Hi, I feel you. same here. not much to do. but I realize when I take naps my fatigue gets better. Ataxia has to do with slowing you down but keep the faith.

p. s.

I drank a lot of products that contain caffeine.

Fresh sliced Ginger made into a tea, eg, just pour hot water onto it!
Ginger has many properties but one for me seems to be a stimulant. I can't drink it after 4pm or it will keep me up.
I also buy dried Ginseng packets from the Asian grocery store.
Coffee definitely helps, but it make me anxious so I don't drink it often.

Gosh you shouldn't have people giving you a hard time over a cup of coffee!! You mentioned headaches and caffeine is used in a lot of headache medications, as it helps the body absorb the medications faster. Coffee is also a vasoconstrictor making the blood vessels smaller, thus relieving some types of headaches. Finding the coffee 'sweet spot' for your own body is the key, as caffeine has some negative affects on the body, but it looks like you've found yours.

lisa1949 said:

This may help. I have Ataxia and Chronic Fatigue Syndrome. I am 65 and have been diagnosed for over a year but have had the symptoms quite a few years longer. I discovered that drinking a cup of proper ground coffee black if you can and strong, helps me to overcome the dreadful feelings of total exhaustion, headache and general disability. People may come down on me, but I know the caffeine helps me - I only have one cup a day but it definitely helps.

Fatigued,
Hi sorry you are so tired. I am adhd and take adderal, & Welbutrin. They both aid in alertness and felling less tired. This took me years of therapy to get the adderal, and I have not smoked or done drugs or alcohol ever. I was told many times no, but I lost a lot of jobs because I was unable to focus long enough to complete even little tasks. I finally took my adult daughter w me to help explain my difficulties to the doctor, and finally received medicine. I am still verry careful w this med I can take anywhere from 1-4 pills a day, but I never take more than one and if I don’t need to concentrate that day I don’t take any.
Hope this explains how difficult getting these meds are. Good luck. j

Hi,

Loving these replies - I seem to be fatigued all the time - I have Sensory Ataxia I am 83 - started just 6 years ago.

Thanks to everyone.

Cheers, Doug Smith, Bristol, England.

I get a treatment of ivig every 2 weeks after it starts to wear off (1week ) I drink cup of coffee in the am and take a nap on the afternoon! I exercise daily and drink lots of h20 I started to use frankincense oil at the nape of my neck for clearer thinking . Hope that this helps!

Diagnosed with RCA coming off of being bed ridden for 1 year with no ability to move legs and multiple daily Myoclonic dystonic seizure episodes so not only does the Ataxia tire me but the massive amount of anti-seizure meds worsen it. I got the all clear from my nuero to drink as much caffein as I could tolerate without being symptomatic. This helped but made me crash so I asked to do IvHG and was told that would worsen my condition due to the issue being a protein synthesis issue. So I asked for B12 injections which made a world of difference! I also added victim in D3, Omega 3 and one called CoQ10 all from Dr. Lessman http://www.procapslabs.com/Products/details.aspx?CoEnzyme+Q-10+200+mg. I have so much more energy and am now able to walk with a cane and seem to be less forgetful. Hope this helps.

Dear Gelu65, Sorry your suffering from such extreme fatigue! Unfortunately, fatigue is a common thread in those with ataxia. I'm 60 years young and drink one cup of hot green tea in the morning and eight ounces of different types (black, green, acai-berry) of ice tea in the afternoon. I rest when tired and try to pace myself if possible, as if I do too much one day, I'm good for nothing the next...,ha! I try to exercise for strength and balance each day, and eat as healthy as possible (lots of veggies and fruits). My best to you...,;o)

hello Gelu65 - thanks for starting an interesting discussion! so sorry you have this awful fatigue as so many seem to - such a pig isnt it!

has anyone tried low dose Naltrexone (LDN) ? Im interesting to know of anyone's experience with this for ataxia - Dr Chris Steele has a couple of videos on you tube about this and promoting this and encouraging this to be used in the NHS.

I will try coffee as people are recommending. I wanted to recommend Co-enzyme Q10 (though someone beat me to it!) as this is supposed to be helpful though it does need to be at fairly high doses - Im struggling to take it as it increases my heart rate but it does seem to make a difference when I can.

Displaymom - I would love to hear more about the Frankinsence oil - where you get it,how you found out about it etc would be really useful if you wouldnt mind.

regards and best wishes to all, G

I had extreme fatigue for many years and no longer suffer from this. I’m 63 and have had ataxia since age 50. The first energy change I noticed was after my endocrinologist prescribed thyroid pills for me to put Hashimotos at bay even though my blood thyroid levels were in the normal range. This made a big difference for many years. Then found myself taking naps again in the middle of the day. Neurologist referred me to sleep clinic for assessment. I only went to appease her as I was sure I didn’t have sleep apnea — wrong! I was stopping breathing 9 times an hour and once corrected with a CPAP machine I completely stopped taking naps. Apnea is common with ataxia and if you have this and COPD your brain is not getting enough oxygen to keep you going. I’m overweight so my apnea may be from this but with Ataxia it could also be because part of my brain simply causes me to stop breathing while asleep. I would definitely get this checked out. Thyroid levels can be checked with blood test but if you are low normal pursue this. Also most docs don’t do a thyroid antibodies test for Hashimotos. Ask specifically for this as Hashimotos can cause Ataxia. If your doc won’t cooperate fire him and go to a new one.

Hi, I do not know any way to boost the energy except to think of something pleasant that lies beyond what you want to do, and then work towards that. In your case it would be nice to have a weedless yard or a weedless garden, and how beautiful that would be. If you have to drag yourself to the weeding, that's OK, too, because once you see a piece of land without weeds in front of you it may make you feel better and get more energy from that.

How to deal with your doctors or your emphysema is another problem that I cannot help you with. I smoked, too, but gave it up 39 years ago. I am a little younger than you but 79 is a pretty young age, too.

May you meet your responsibilities

with love, insight, and creativity,

Norbert

I believe that this whole thing about sleep apnea is just a ploy to make money. When I had my sleep apnea test they found that I wake up from sleep 50 to 60 times per hour. BALONEY!!!! I believe that everyone would fail that test. Just my opinion,

Norbert

maryseas said:

I had extreme fatigue for many years and no longer suffer from this. I'm 63 and have had ataxia since age 50. The first energy change I noticed was after my endocrinologist prescribed thyroid pills for me to put Hashimotos at bay even though my blood thyroid levels were in the normal range. This made a big difference for many years. Then found myself taking naps again in the middle of the day. Neurologist referred me to sleep clinic for assessment. I only went to appease her as I was sure I didn't have sleep apnea --- wrong! I was stopping breathing 9 times an hour and once corrected with a CPAP machine I completely stopped taking naps. Apnea is common with ataxia and if you have this and COPD your brain is not getting enough oxygen to keep you going. I'm overweight so my apnea may be from this but with Ataxia it could also be because part of my brain simply causes me to stop breathing while asleep. I would definitely get this checked out. Thyroid levels can be checked with blood test but if you are low normal pursue this. Also most docs don't do a thyroid antibodies test for Hashimotos. Ask specifically for this as Hashimotos can cause Ataxia. If your doc won't cooperate fire him and go to a new one.

Take energy formula capsule of GNC. It may help for energy.

Hi,

As has already been mentioned on here, I take either B-12 (1x in the morning; 1x around 3:30 pm) or B-Complex, CoQ10 (though I’ve only tried this for a short while), napping when I feel my body turn to mush/useless, drinking 1-2 cups of coffee with a bottle of water help me with my fatigue.

I also save taking my Fish Oil (OMEGA-3s) and D3/Calcium mix until I go to bed at night - it seems to help me sleep.

I also do mild exercises and stretches 2x/day: 1x when I wake up and 1x around 2 or 3 pm.

Also, for additional tips, you can do a search in the search box up by the “sign-in” link. I did one for you for “fatigue”, and please help yourself to do one with more specific or different terminology:

http://www.livingwithataxia.org/main/search/search?q=Fatigue

I also heard (but haven’t tried yet) that oat straw extract is an effective tool to help beat fatigue.

Gelu65,

I do a liquid B12 that goes under the tongue first thing in the morning. It gives me a great boost of energy, but not jittery like coffee or other "stimulants".

I also drink coffee in the morning. Two weak cups, but it helps get me going.

Very well said. I agree with you on all areas. Thyroid has been an issue with both of my parents. They are both hypo. Many tests have been done yet I am a low normal. No doctors will prescribe at this level. Hoping I can per sued my neurologist to try it. I just had a 24 hour halter monitor test done because I was feeling my heart jump out of my chest a few times a day and waking me up in the night. When my BP would read 76/47. Not normal at all and I was symptomatic. Waiting for results still.



Glitter on Butterflies said:

Hi,


As has already been mentioned on here, I take either B-12 (1x in the morning; 1x around 3:30 pm) or B-Complex, CoQ10 (though I’ve only tried this for a short while), napping when I feel my body turn to mush/useless, drinking 1-2 cups of coffee with a bottle of water help me with my fatigue.



I also save taking my Fish Oil (OMEGA-3s) and D3/Calcium mix until I go to bed at night - it seems to help me sleep.



I also do mild exercises and stretches 2x/day: 1x when I wake up and 1x around 2 or 3 pm.



Also, for additional tips, you can do a search in the search box up by the “sign-in” link. I did one for you for “fatigue”, and please help yourself to do one with more specific or different terminology:



http://www.livingwithataxia.org/main/search/search?q=Fatigue



I also heard (but haven’t tried yet) that oat straw extract is an effective tool to help beat fatigue.

Im going to start a new thread on this but wanted to ask you first. just got back from back from Yosemite camping for Easter. We were at 6800ft and I did fabulously!! No trimmers, jerks, balance issues, numbness or tingling and the best part…I was able to walk un assisted and even do some mild nicking!! Oh my goodness! My family cried with joy. Did a bit of research only to find one thing about Michael J Fox who states that high altitude re leaves his symptoms with Parkinson’s. Have high are you in Colorado and have you experienced anything like this?



Julie in Colorado said:

Gelu65,

I do a liquid B12 that goes under the tongue first thing in the morning. It gives me a great boost of energy, but not jittery like coffee or other “stimulants”.

I also drink coffee in the morning. Two weak cups, but it helps get me going.