Hi all! I have a quick question. I exercise regularly usually 4-6 times a week and I enjoy it for the most part. However, everyone I know that exercises keeps telling me how it energizes them, gives them more energy. At the end of the day I am just exhausted. It does not matter if I exercise for 30 minutes or an hour. No where after working out am I getting more energy. So my question is, is that something that is typical to chiari? It very well may not have anything to do with it I just thought I’d ask and see if anyone else experiences the same thing. I don’t do too much with my upper half but I use the treadmill, arc trainer and sometimes the bike. I don’t run and I don’t lift weights Or anything like that. Thank you all!
I would exercise as much as it is comfortable to you, as it is important. But only do what you can handle. Rest often and never overdo it. I walk mostly. Exercise is important, but in moderation.
Firstly, my situation is not chiari, but it is neurological.
I must admit exercise as a hobby is not my thing. Not at all. When I was working I was getting enough physical activity to burn up all of the energy I had. I was ‘on-call’ 24/7, so if someone needed, I got to and did whatever was required. If I got the call at 2am I was up and on the go. I had a bit of a motto ‘Fulfil the need’. If my clients had a need it was my role to meet it or find someone who could. And I enjoyed it my role.
Then I had neurosurgery, I thought I’d just continue as before. BAD IDEA. Thought I just needed to build up stamina, so I pushed myself harder, EVEN WORSE IDEA.
Post surgery all of my tolerances had altered, my energy levels had evaporated and as for stamina it simply vanished, 2hrs of ‘normal’ activity and my head was ready to explode. Slowly and I mean very S.L.O.W.L.Y. I have increased some physical activity, but nothing like previously. I’ve had to reset all off my normal limits, all of my normal rest limits. I now have a real issue with bright daylight, never had that before, now I have to limit my ‘daylight hours’. I’ve truly had to change everything to sit within the ‘new me’ and I hate it. But that’s my new reality.
For me, it’s all been a learning. Learning my new limits. Learning what I can and cannot manage and cope with, but I soon learnt that I have to listen to my body. If I ignore it I pay and if I ignore it even further I can end up bedbound in agony.
Ahhh, don’t do that. Listen to your own body, it will give you signs, it will tell you. You just have to listen. I know this 'cos I didn’t listen and that was BAD.
Merl from the Moderators Support Team
Thanks Merl! I am definitely still learning the new me and my limits. I have taken everyone’s advice and slowed it way down and it seems to be much better for me so far. This is definitely a learning experience and I appreciate having others to help me navigate!
I am having the same issues. In May, I will have decompression surgery and I am trying to be in better shape for it. I am just completely wiped out, though. I can’t stay awake at night, getting up is hard. I think it is a combo of also trying to work fulltime and care for my parents too.
Hi! Good luck in advance with your surgery! That combination would leave me exhausted too. I did what everyone suggested and scaled back what I am doing exercise wise, wayyyyy back. It’s not at all what I wanted because I really enjoy going to the gym but cutting back and listening when my body says enough, seems to have helped with the exhaustion. I do not work right now but I am taking a college course and have 3 kids so that was really the only place I could cut something back. I’m still tired but not near what I was previously.
A big part of this recovery thing is prioritising. There is a theory commonly known as ‘spoon theory’. In basic terms spoons are equivalent to energy, let’s say I have 10 spoons to use each day. I have to prioritise where I’m going to use those spoons. The amount of energy each person uses for each activity varies and although kilojoules (kJ) are a measure of energy, it can be difficult to equate kJ into activity, hence the ‘spoon’ analogy.
So let’s say today I have a plan to clean up my yard. First I have to go and pick everything up, that’s going to take 4spoons. Then I’m going to mow the lawns, that’s going to take another 5 spoons. That leaves me only one spoon for all of my normal daily activity, but I also have to tidy the house, walk the dog and take out the rubbish. That’s at least 3 spoons worth. So to do ALL of this I’m going to be using more spoons than I have, so I’ll end up using some of tomorrows spoons too. That is goin to make tomorrow an awful day.
I have to prioritise. OK so today I’ll clean up the yard, then tomorrow I’ll mow. This way it leaves me enough spoons to do my normal tasks and still be OK for tomorrow. It’s all about management and although my mind often tells me I can do more or I should do more, my body simply can’t. Psychologically this can be a little difficult to accept at times, but if I over do it I end up having a headache from hell, where I’m tempted to dig my eyes out with a teaspoon the pain is just so intense. It becomes a battle between the psych and the physical, but eventually I learnt I MUST listen to my body. I have no choice. Pain is a great learning tool. One day of full on activity equals 3 days of agony, that is not a great pay off. I learnt that the hard way.
One last thing, if ANYBODY ever tells you this is all easy to manage, they have never been here and to be honest, wouldn’t have a clue. We all have to manage the best way we can for ourselves. This is not a ‘one size fits all’ sort of scenario, how I (try to) manage compared to how you manage is VERY individual, so trying to compare exactly is impossible. We do the best we can on that specific day and that’s the best we can hope for. Over do it and we pay for it and only we know how bad that can be for us. NASTY.
Merl from the Moderators Support Team
Dear tnl3 Hey! I had Chiari decompression surgery in 2012, but since then have become a nationally-ranked racewalker (1,500meter - Senior Olympic curcuit) My biggest problem is that training stress can bring on old Chiari symptoms. Prior to the surgery, I was close to total parlalysis. Post surgery, the grace of God allowed me to heal well enough to get 3 normal functioning days - but every 4th day, the paralysis and all Chiari symptoms return. (I’m guessing it’s like ‘phantom pains.’ Things are healed, but the Central Nervous System is simply remembering the old ‘boo-boos.’) On the 3 good days, I try to go out and tear out a racewalk/ powerwalk workout from 15-minutes to 1:30 minutes long. I find that if I push it TOO hard and too long, I can trigger ‘unscheduled’ paralysis. Of course, after every race I do, I trigger paralysis - 'cuz I am pushing it harder than anyone else. (I give 120% in every race!!! I’m so competetive.) Not every workout will trigger Chiari symptoms to return. I am finding out that I do better if I put a day or two of REST in between a race-pace workout. Age has something to do with this, too. I guess. But, you are right in that stress - not just workout stress, but emotional stress, psychological stress, etc. can trigger temporary return of Chiari symptoms.