I was just wondering how big a role fatigue plays in the average chiari sufferer, with me it is one of my bigest symptoms most of the time just a little bit of activity and i feel exhausted along with kind of a nauseated feeling, i can not do 95% of the things i did before i also noticed the weaker i get the more muscle pain i have im still not convinced my smptoms are from Chiari, im going to see a specialist oct 25
Hi, yes i can totally empathise, fatigue is HUDGE for me, but im so tierd i can't sleep for weeks, then sleep for days on end, yesterday i did 14 hours straight sleep from coming home from work at half 1 due to chronic headpain drives me mad, im due to see CFS/FM specialist in November, but im led to believe that alot of people with symptomatic chiari often get mis diagnosed with CFS/FM as a waste bucket diagnosis, will be interesting, I;ve tried change of diet, berocca and all sorts, but the tiredness can be really debilitating at times.
Fatigue has been one of the biggies for me too. I have days where I slept 8-9 hours, but can't keep my eyes open. On bad days, I nap when my almost 3 year old does. He sleeps 2-3 hours, which is wonderful. There are nights I just can't sleep; headache, parasthesia issues, twitching, etc and I'll get out of bed after hubby falls asleep and watch tv in the living room until I'm so exhausted I know I'll sleep. This combination of fatigue and insomnia is awful! The doctors tried to blame my fatigue on my autoimmune disease, but I've actually been doing better in that regard, and I never had this kind of fatigue when it was at it's worst.
i usually dont sleep very good either but no matter how tired i am i cant nap in the day, yea im pretty sure i have sleep apnea, i went in to one of those sleep centers so they could test me, they hooked a bunch of wires up to me and i couldnt sleep because of that and then my back pain kicked in so i just went home i never slep so i never got a diagnosis but its pretty obvious that i must have it
My son just can't function with less than 13 hours sleep. But often it goes to as much as 18 hours. Almost everyday he stumbles in the door from school and falls onto nearest chair for sleep. He gets headache, confused, can't focus and very weak (especially in his arms)
It's not unusual for him to come home from school at 4pm and sleep until 7.pm get up for something to eat and be back in bed at 8pm until 7am next morning. Still waking up tired next day.
He wakes a lot during the nite especially when he has headache (which is most of the time)
But goes back to sleep very quickly. I'm waiting for a sleep study.
All of your symptoms mirror mine. A typical sleep pattern for me is sleep from 10ish-12ish - 8 or 9 am, then from 12:30pm-2:00. If I include physical exercise than I'm just whipped, non functional. Fatigue, headaches and nausea has been my biggest issues for years and years
I too have major problems with sleep and fatige. I too go weeks not being able to sleep and will be up to 2-4 am and then have to nap. I tried not napping but still can't sleep. Then I go for a while sleeping for 16 hours or more. I did have a sleep study done and I do not have sleep apnea. That's good. Along with the headaches, muscle twitches and overall not being able to get comfortable....it all seems to cycle. NL put me on an antideppresent to try and improve my sleep but it does not do much. Exerting even a little bit also brings on extreme fatigue. I had a few good days and took advantage of them which caused 2 days of agony from doing too much. Definatly see a specialist. I am waiting to see one right now but I have to get private health insurance as I just lost my job last week. They say its not because of my health but I truley know it is. It was an inconvenience to them so they started finding the smallest things to get me out. Keep your chin up.
Glad to hear im not alone, I cant sleep average 4/5hrs broken sleep a night, then on other days all I do is sleep. I cant do things like I used too, even cleaning my house at times renders me exhausted, I cant think straight,talk and the stairs feel like mountains, when im like this even lifting the kettle to make a cuppa exhausts me. walking a few hundred yards to the local paper shop feels like a marathon.
Like tayla I have tried everything berocca,energy drinks vitamins I even lost two and a half stone thinking my weight was making me exhausted, even this has not worked so I am now 9 stone and for some reason still loosing, and im eating loads???????
Fatigue has been dramatic the past 10 years. Work has gone from 40 to 20 to 12 to 0 hours/week. No energy for any hobbies or fun. Just a 30min trip to get my groceries can spend all my energy for the day.
Since I got a tracheotomy to keep my airway open at night, I sleep better and can sleep all night. I feel better during the day, but the fatigue is still there.
Before that, sleep was a nightmare. Part of my brain had to stay awake in some state of panic, working against the force of the laryngeal dystonia and keep the airway open.
Because of the headrushes, I try to move my head as little as possible. All activities that involve bending down or moving my head a lot increase fatigue quickly. The entire day seems to be one long headrush that knocks me out every afternoon.
Yeh, I go between being exhausted and crashing mid-day...and/or not being able to sleep at night. I was on ambien for a bit but have gone off of it and am twiddling my thumbs at all hours. I just started taking melotonin though and it seems to help. But, I def notice a difference in symptoms when I have had good sleep vs. poor/no sleep.
Do any of you have these fatigue symptoms POST decompression surgery? I had surgery 6/09 and it helped with many of my Chiari symptoms. I was also infected with a really serious strain of bacterial meningitis at the same time that almost killed me. So even though my Chiari is much better post surgery I have bad insomnia and terrible fatigue. I describe it as aging 30 years in 6 months (45 years to feeling 75 years old). Don't know if it's from the Chiari, the surgery, residual from the meningitis or what . . .
A friend of mine had these symptoms of insomnia and fatigue for many years. He was moving like an old man. After many test they found a chronic esophagus infection. His symptoms disappeared after treatment.
Perhaps those germs are still lurking somewhere in your body and keep your immune system on the alert all the time.
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