Anyone with Chiari suffer from constant fatigue?

Posted , 22 users are following.

Hello I have had issues for many years now.  Headaches, dizzyness/vertigo, tinnitus, you name it.  The absolute worst thing I suffer from is chronic fatigue.  I am always tired, I cannot hold a job full-time because I will just pass out.  It doesn't matter how much or little I sleep, 8 hours or 13 hours or anything in between as soon as I wake up I am exhausted.  I've had a lot of tests done and nobody could help me (honestly I feel like many of the doctors I have talked to don't even believe me).  My eye doctor of all people went through old charts and CT scans and noticed I might have Chiari Malformation.  I got an MRI done last week and indeed I do have it.  I don't have much more information other than that, I have to wait almost 2 months to see a neurosurgeon.

I am curious if anyone else with CM has suffered from constant fatigue, and if any type of treatment has helped?  I've gotten excited and let down too many times so I want to temper my expectations for the next 2 months.

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  • Posted

    Hi,

    I am only recently diagnosed with chiari after having gone for an MRI for headaches.

    Like another responder, I have also been anemic for a while now, but even now with my iron (finally) going up, i still get tired constantly. I'm 38 now, so i have been trying to figure out if it's just getting older, my diet, my low iron or what.  I also have a very busy lifestyle (working mom with high-stress job).  But some nights i can't make it to the end of dinner and have to lie down on the couch while the fam finishes up. This doesn't seem normal...  awful! And at work my concentration is hit-and-miss.  I have to write everything down to make sure nothing slips my mind.

    First thing in the morning i'm completly full of pep though. Although i often wake up with a headache at the back of my head.

    This chiari stuff seems so random and all-encompassing.

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    • Posted

      Hi catherinemm123

      I appreciate this is a long time after this post, but I wanted to follow up on this theme you so eloquently outlined above.

      For me, I am 13 months post decompression surgery. People tell me I look fine, and I'm much better than I used to be, but the constant headaches, especially when waking up, tiredness, cognitive problems and memory issues mean I have a few challenges to live with.

      So I'm really interested to know how you manage the fatigue aspect.

      Many thanks

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  • Posted

    Hi.Constan extreme fatigue is one of the reasons I was going to see the Dr. along with the pain I'm having. I have been fighting extreme fatigue for about 9 months now to where I can hardly get out of bed. Got any suggestions to feel up to getting out of bed? My neurologist has suggested B-12

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  • Posted

    I am just finding out that I have cm. It was found accidentally thru an MRI. I have every symptoms except constant migraines. I have to go for surgery in a month to hopefully fix the issue. I am extremely tired constantly. If I laugh, sneeze, cough I get massive pain in the back of my head. Dizziness, blurry vision, naseau. In the exam.with the surgeon he said my eyes shake when he did the follow finger test. And I have absolutely no balance. Very forgetful too. 

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  • Posted

    My 15 year old son was diagnosed with Chiari a few weeks ago. He has had all the symptoms for Chiari Malformation type 1. I'm trying to figure out what I need to look for when we go to the ns. He goes on Sept 13th. He sleeps all the time and there are some days he won't sleep at all. Has severe headaches. We learned he had it when he got a severe concussion. They found it in a ct scan. Please help me understand this malformation. I had never heard about it before now.

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  • Posted

    Just an update to this.  I posted this well over a year ago.  I had a follow up Cine MRI done and was diagnosed with tonsils extending down by 12mm as well as highly reduced incoming CSF flow.  About 4 weeks ago I had decompression surgery.  I'm still in pain and very tired but I didn't really expect anything else this soon after surgery.  I will update if any of my fatigue symptoms have gone away down the line.

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  • Posted

    I got on an anti-depressant and my fatigue went away. apparently the depression was worse than i thought because i blamed chiari. fun stuff lol i also use CBD oil and i find it gets me going and more active, i can last till 5pm usually now. 

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    • Posted

      Hi Fmac93

      Can I ask what CBD oil you use please?

      I want to try, but want to make sure I am legal, with good quality offering to see if can ease pain, fatigue et.

      Thank you

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  • Posted

    Glad to hear you're getting better. It is funny how anxiety/depression can manifest in such a physical way. I have apparently developed some sort of aversion to physical activity now to the point that any activity/exercise induces panic. I have heard good things about the CBD oil - how do you take it? What kind? How?

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  • Posted

    Very interested in this particular topic.

    Am now 13 months post decompression surgery. I am functioning but it doesn't feel like winning yet.

    Constant headaches, mostly fatigued, and listless by time I get home from work. Poor short term memory and cognitive skills, and now hearing lo level white noise in my head. I know many many are worse.

    Have not been on any pain management since I stopped the tramadol post op plus a few weeks.

    I am still active, it just takes a lot out of me to achieve anything.

    Guidance welcome.

    I fully appreciate we all have our own stories and there is no instant solution, hence this thread is so important to me.

    Best Wishes to all

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    • Posted

      I hope your NS is working with you on that post-op! I cannot provide any advice necessarily, but my own story. Massive fatigue before before the surgery during any physical activity. I am very hyper sensitive to sensations and over the 19 years of dealing with this I developed a bit of an anxiety/panic response to activity. 19 years of docs telling you you're crazy (one literally said that) and being told its asthma, allergies, etc, and nothing working you can become a little anxious! My point is that I had to figure out that the anxiety was a chicken v. egg thing. Was I feeling these physical symptoms because of the anxiety, or was I developing an anxious response to the physical feelings that then only exasperated the physical. turns out its the later, and I am now 5 weeks post-op. Already some improvement and I am of course not able to do much physical for another 2 months so wont know fully until much later. I guess point is that while physically I have found a solution, some of that depression/anxiety that manifests physically will still exist and I will have to heal that as well! Be open to that if that is your case!

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  • Posted

    Chronic Fatigue Syndrome, Fibromyalgia and Chiari all have been linked to reduced spinal fluid flow in the area where the hindbrain and the spinal cord meet.  Thus, the three syndromes have most of the same overlapping symptoms: fatigue, insomnia, aching, pain, breathing issues, numbness, cognitive lapse, etc.  Chiari decompression surgery is performed to create more room in that brain/spinal junction, where the herniation occurs, but does not address the cause: a "tight" spinal column pulling down on the hindbrain. The "tightness" can be released through a tethered cord surgery or a form of it called "Tight Filum Terminal Dissecutum" surgery, performed by three US surgeons: Dr. Heffez, Dr. Fraser Hernderson, Dr. Bolognese, or one in Spain: Dr. Salvador.  Do your research.  This surgery, unlike the decompression surgery I had, got me out of bed after 2-1/12 years.  Do your research!

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  • Posted

    I have suffered from extreme fatigue for the past few years. My labs are normal. Was just diagnosed with Chiari type 1 and came across this blog and was so relieved to see that there are others out there with this type of symptom. I dont usually complain much, have tolerated the pain, headaches, dizziness, blurry vision. The symptoms that actually brought me to the Neurologist were my hand tremors, getting worse, along with a positive Hoffman's sign and extremely exaggerated upper and lower reflexes. But I had no idea where this debilitating fatigue came from. I mean I feel "bone tired" all the time. My bones ache with fatigue and every time I just walk i can actually feel the lactic acid building in my muscles and they ache too. I have always been an active person but just getting ready for work just exhausts me and I want to climb back into bed before the day even begins. It really effects your quality of life! I used to exercise, go the the gym at least three times a week, attend classes. Now even the thought of going for a walk is out of the question for me. I have gained weight and I struggle to live a normal life. Feeling exhausted sucks! I was wondering if Ritalin would help my fatigue without causing my tremors to get worse? Anyway thanks for making it so i a dont feel crazy anymore regarding the fatigue. My husband thinks I am making it up. I was begining to think that too.

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