Dear folks,
When I look at the MSA symptons, I don't see fatigue or lack of energy mentioned. I would like to do more things in a day but I have so little energy and get tired so easily. I try to do a little bit of exercise and can still walk a few steps, but it doesn't improve my energy. Does anyone recognise this or has tips on how to get more fit? Supplements maybe? My neurologist says no dopamine no energy when I asked him about it......
Love from sunny Holland
Gerdy
Hello Gerdy - sunny here too, very strange for England!!
Fatigue is well known for MSA - Jackie sadly suffers with constant fatigue. Her neurologist suggested Amantadine but that didn’t help. More recently Jax has tried Q10 Enzyme supplement - available from Amazon (UK. Co-Enzyme Q10 amazon.co.uk/dp/B008RWCI1C/... ). This, I think, helps a little.
The most beneficial thing Jackie has done, as suggested by our superb MSA Trust Nurse, is to accept she needs a rest during the day and have a couple of hours in bed mid afternoon. This is like changing her batteries and she is awake for the evening- we have always been late birds and are seldom in bed before 11:30pm!!
Good luck, take care, Ian x
Thank you for your quick reply Yanno! Does Jax actually sleep during her rest time or just rest and relax in bed? I have heard the Q10 mention before maybe a good idea to give it a try!
You ask a very pertinent question! We always joked with each other as Jax didn't like me saying she was going to bed to sleep - she always said it was just a rest.... now we both agree that usually she sleeps! Either way, a Spanish style siesta, without doubt helps.
I think we all have in-built prejudices from our earlier years; I have to get up early...I mustn't have a snooze during the day...I have to spend every minute doing things...etc. etc. Now Jackie and I try and have a more holistic view...whatever works is the right thing to do. We still do loads, we try and do the many things we did before the beast of MSA came into our lives but we also accept that we need time doing nothing every day.
Take care, Ian x
Nothing wrong with a Spanish style siësta!! And I totally agree, overboard with all built-in prejudices, and have to’s, just do what feels best at the time, being in tune with your own body is nr.1. I really had to learn to set my boundaries since the Beast is in my life! So I think I will go Spanish, see if it suits me too💃
Sorry Gerdy but I have found it gets worse all muscles seem to ache and tire easily take care Derek
Hi Derek, thanks for your quick reply, yes I've noticed it getting worse as well. Unfortunatly😒
Hope you’re not having too bad a time with this horrible illness
Gerdy,
My Sue also gets very tired doing nothing sometimes. She also naps when she needs and this helps her stay awake in the evenings a lot more.
There is a study I have heard at Birmingham to try to understand why neurological disorders have a lack of energy, is it chemical, physical, neurological.... No one knows.
Sue has realised she needs to rest when she has to and sometimes that can be for 5 minutes.
Don't fight your body it's telling you to rest for a reason.
Paul
Thank you for your reply Paul, yes I also think listening to your body is key!
I am chronically fatigued whether I exert myself or not. I had never been able to nap during the day because if I did I’d wake up groggy and never could shake that feeling for the rest of the day. Now, however, I could win a napping contest- if I could find such a thing. I start to wear out after lunch and have even fallen asleep while at the table eating!! So I learned how to nap out of necessity and almost every afternoon I sleep for a couple of hours at least .
The siesta Spanish style works for you too!!
Hello Gerdy
Fatigue is the most troublesome problem for John, he has tried supplements etc. they don't appear to have helped. He gets about 1 hour, usually between 4 pm - 5 pm where he feels a little better. Going out for a coffee, just a short break is about all he can really enjoy. We try to make the best of a bad situation, take a day at a time.
Carol X
Hi Gerdy. I find as has been said a nap is the best solution. Sometimes after shower and breakfast I find the only answer is to go back to bed.Good luck finding an answer
Sue x
Fitness seems to be so important?
Extremely High Temperatures
Are we nearing the end?
Anthing else I should do?
