Chiari Online Support Group



Does anyone else have a problem with exhaustion? It’s a fairly recent thing I’ve been dealing with but I just crash and can’t stay awake even when I get a good sleep the night before. It’s basically a daily thing just now and in the odd occasion I have a good day and don’t feel so tired and sore I pay for it the next day. Is this the chairi? Does anyone else suffer from this?

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Yes this is a symptom. You’ll learn to balance your days. Some are worse than others. 3 years after surgery I still have issues. About 2pm I get REALLY sleepy. At work I take a caffeen pill for a pick me upper. At home I try a nap for 1-2 hours. Look at the side effects of the pills your taking also, they may be adding to this. I’ve had to change dosages and pills altogether to help. All i can say is hang in there. You will learn to live with specialness we have.

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Thank you. Just trying to get used to all of this :blush: Hope you’re keeping well


I also have exhaustion, and it is one of the harder symptoms to cope with. I’ve been fortunate that I could adapt my work schedule to accommodate, but even then, its still difficult. I’m an Occupational Therapist, and I have had to train many patients in energy conservation techniques. Some of my rules to save energy are; Any activity you used to do in standing, do in sitting. For example, folding laundry or cooking dinner. Investing in a tall stool can be a life changer. Pace yourself when it comes to balancing work, and taking care of your home. Try to limit the number of physically demanding tasks you do in a day, and allow for 1-2 rest days in between. If there is an event or activity which is really meaningful to you, then try to schedule it for the time of day when you have the highest energy.

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Thank you. I’ll try that. I’m really struggling with work at the minute and have already missed three shifts this week (migraines and nausea) problem is I’m a carer and do twelve hour shifts. Just don’t know how to work round it. I can’t afford to cut my shifts though I think I might have too


Hi Finixx, This is the reality of Chiari. I used to teach maths at primary school. By late afternoon, early evening marking books I would simply pass out right on the books and sleep. I would wake up, mark a book, sleep ongoing to the morning hours. It became too much. I now teach art three days a week with no books to mark. You might well need to adjust your working hours. Rest is very important to assure quality of life. When you over exert yourself you could well find yourself having several days of pain and exhaustion. Take care and plan well.


Thank you flerrie. I’m considering cutting my hours at work as I’m a carer so I work twelve hour shifts. I’m noticing now I am struggling on my days off especially. Just need to find that work life balance again


I have the exact same thing! One day I feel great and i feel like i can do anything but the next day my body is im so much pain. I realised that I need to rest otherwise I’ll be in severe pain and can’t do much for a couple of days or weeks.