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.
4 likes, 30 replies
Linleel cokeguy223
Posted
Yup- exhaustion, fatigue are part of Chiari. It's probably the most common symptom. Sleep Apnea is also connected with Chiari. So chances are you are not getting enough sleep maybe due to the sleep apnea.
Don't give in to the negative doctors. Keep on pestering them!! After you get all of the tests for everything else it could be, request a Cine MRI which detects CSF flow blockage. I went through all the tests too. Didn't find anything wrong. If I hadn't had the initial MRI stating I have Chiari 1, I would still be wondering what the heck was wrong with me. The CINE MRI showed I had complete blockage of CSF flow and so I had surgery.
Probably the only way you can see a NS sooner is if you pass out and get taken to the ER. Not that I'm recommending it, but it works.
When you do see the NS, take someone with you who can help bolster your case and confidence so the lofty Docs don't try to manipulate you or blow off all your symptoms. Plus they can take notes.
Every one of my doctors has initially "NOT" believed I had Chiari or that it was serious enough for surgery, until I had the Cine MRI.
The problem is there are VERY FEW doctors out there who have actually dealt with Chiari. Get copies of all your tests and MRI's. Research Chiari so your are prepared. I had researched the comments made in my MRI report so I could have time to understand them. Check out information at National Institute of Health or other mainstream educational/ government agency. (I would give you links to them, but the moderator on this forum always deletes links.
GOOD LUCK and Welcome to the RARE DISORDER group!!
Emis_Moderator Linleel
Posted
Please stop saying we always delete links as this is not true. If links are to reputable sites like you mentioned they will be approved. For NIH see below
http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm
This is included as a reference in our article here
https://patient.info/doctor/chiari-malformations
Regards,
Alan
Linleel Emis_Moderator
Posted
Well, you've always deleted links in the past and when I've used them, my post gets cut with no explanation. No one has ever responded to me before re: what is going to pass muster and what isn't. Glad to hear we can put links. I have found good information from NIH.
Emis_Moderator Linleel
Posted
I should have put this in the post above but there is an FAQ here re links
https://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts
Linleel Emis_Moderator
Posted
angela32830 Linleel
Posted
Hello
Im so sick I can barely type.
Please, where do I get a Cine MRI in Scotland/uk?
Kerenza cokeguy223
Posted
I can really relate to this! I used to think it was because (for years) I have had severe iron anaemia (bad enough to give me a heart murmur and to require blood transfusions and iron infusions) and also had a bad issue with vitamin B12 deficiency. However, these things have been resolved now and yet I'm still massively tired! All the time! Like you, it doesn't matter if I have 3...8...or 13 hours of sleep... I am still tired. I have no stamina at all. Even on the rare days I wake up feeling like I can get things done, I soon have to stop where I'm so tired.
Having ruled out so many other things, I can only assume it's because of the chiari. No one seems to recognise it as a symptom though! So I end up questioning myself and wondering if I'm just lazy when I see my neurologist or neurosurgeon! I know I'm not though, because I never used to be like this.
It's horrible!
I think maybe it might be related to constantly being in pain? It might be more than that though, I don't know!
I don't have any advice I'm afraid as still trying to work this all out myself... But wanted you to know you're not alone :-)
All I will say, is listen to your body and not other people. If you are tired, and finding things too much... Don't do it! You'll get to a point where your body will start shouting at you and that's not fun! If I over do things, I will not just be tired afterwards, I will be in severe pain for days. I'm slowly learning that it's just not worth it and I have to take care of myself.
Take it easy x
Linleel Kerenza
Posted
Have you ever gone to a sleep lab to see if you have sleep apnea. There is a connection between Chiari and sleep apnea. That would cause the endless exhaustion.
From what I've read, exhaustion is a symptom of Chiari. It would also be connected to constant pain.
Also- look at any meds you are taking to see if they have "drowsiness" listed as a side effect. MY GP is having me go off drugs that may be contributing to my dizziness/balance.
Kerenza Linleel
Posted
Hello, thanks for the reply. I've never been tested for sleep apnea bug am wondering if maybe I should be!
I have suffered with insomnia since I was 9 years old which I'm sure doesn't help. I've not been decompressed so am in constant pain, although am now considering the surgery, as it was left to me to decide. Pain is very tiring!
I don't take any meds now, as they weren't helping and the side effects were not good! I can't take a lot of the usual stuff for various reasons! I have noticed a slight improvement since stopping them, but I'm still knackered so much of the time!
Thanks for the advice :-)
Linleel Kerenza
Posted
They told me after surgery that I needed to be tested cause I stopped breating so freqently. Did a sleep stufy about a month ago- Stopped 39/minute. They said that it can lead to other problems, like heart prolems, if I didn't get it treated. So I've been using an APAP machine since mid Sept.
From what I've read, the exhaustion doesn't go away so you have to compensate for it- naps during the day, etc. Also, you're right, Pain causes all sorts of side effects besides pain. It can be very draining. Have you seen a NS about getting the surgery?
loopytindraws cokeguy223
Posted
Hi, I have not posted for a while but I really relate to this I always thought I was just really lazy. But 2 years ago I was diagnosed Chiari 2, I try to keep going as long as I can I have managed to keep a full time job and my employer is great. But some days I have no choice but go to bed it is just not possible to stay up.
I do suffer with insominia wich is also a Chiari sypmton (i think) even when I do sleep I suffer from fatigue in the day. You just have to do what you can and listen to your body and learn when to stop, I have found it is not worth pushing too hard you just suffer for longer in the long run. I once was determined to sort my garden and worked too hard and then was unable to work for 2 weeks.
Today was my first duvet day off work suffering from "zombie head" in a year.
Linleel cokeguy223
Posted
I also read somewhere that Adderall helps with fatigue since it's a stimulant. Hard to say if your doctor would prescribe it for you.
kekerene cokeguy223
Posted
I felt like I wrote this post. Fatigue has been my worst enemy forever. The headaches started 6 years ago, then the dizzy spells followed, along with the other symptoms you mentioned and some. Some symptoms come and some symptoms go but the fatigue has been the absolute worst and has never left the building. It is a thorn in my side and I could sleep for a week straight if I didn't have a full-time job, husband, and 6 year old. I would fall asleep at my desk daily. Thank God I have a cool boss. The only thing that has remotely helped has been Adderrall or Vyvanse. It's for ADHD which is what I was diagnosed with before I knew I had Chiari. It also helped tremendously with the dizzy spells because it keeps my blood pressure elevated so that it doesn't drop every time I stand up. And it has also helped with the brain fog. My surgeon seems to think the fatigue is a result of all the other symptoms wearing me out and that fatigue itself is not an actual symptom. Nevertheless I'm having decompression surgery December 6th because of the more serious symptoms but I am praying that the fatigue will go out the window along with all the other symptoms and then I can chunk the Adderrall in the trash but it has been my saving grace for the last year and a half. I hate taking meds, I've tried about 5 different antidepressants before this all on which I stopped taking after a month. I was desperate to feel better and was willing to try anything but if it didn't help then I would stop taking it. Just wanted to share because I know the feeling.
Guest kekerene
Posted
Hi, I was wondering how your surgery went and if your fatigue disappeared afterwards? Fatigue is the biggest thing I struggle with but have the other symptoms such as headache when straining etc but have been told by my neurosurgeon that the surgery won't help the fatigue.
Jenaa cokeguy223
Posted
I can totally relate to this. Extreme exhaustion. I can sleep as much as I want but I always wake up exhausted as if I haven't slept in days. I also had an iron infusion as I was borderline anaemic but this didn't help with the tiredness. My gp mentioned something about chronic fatigue syndrome but I told her I wasn't interested and couldn't deal with another medical label at this point.
I have been tested for every other blood disorders under the sun 😂
I have found nothing to help so far. I am trying to concentrate on strengthening my muscles in the meantime and awaiting physiotherapy.