Chronic fatigue???

[lifeisgood]

I am wondering how many of us are left feeling exhausted post surgery.
I have talked with another fellow friend who had an AN removed a year before me.
She has been overcome by a slew of virus and is left pretty much on disability.
So, I would like to hear from others regarding energy levels.
I am in the midst of tests right now testing cortisol. It is extremely high.  My blood pressure is extremely low.
I am tired all the time.  I found out I have anemia a month ago and am now on iron pills.

To give you an idea.  I am almost 45, have a 5.5 year old and a 3.5 year old son who has autism.  Usually when I say that I hear "well that would make anyone tired".
I feel like I am in a much older ladys body.  By 1 pm, after sleeping for 8 or so hours, I am ready to sleep again.

I am almost 5 years out.  If you feel as good as before surgery or better, let me know that as well.
I had a mild case of shingles less than a month before surgery. I always wonder if some sort of virus stayed in my system and the stress of everything left
me feeling like I do today.

Mary

[leapyrtwins]

Mary -

as you might already know, low blood pressure, in itself is a cause of chronic fatigue and I'm sure the anemia didn't help the situation.

I had surgery 5/31/07 and I'm tired a lot, but I don't think in my case it can be attributed to my surgery.

For me, it's basically lifestyle - working all day, single parenting in my "off" hours, staying up too late at night on the forum or reading, etc.  My stress level is also at an all-time high lately (court dates, the bad economy, a son with ADHD, etc.,)   IMO the only sleep issue I can truly attribute to my AN surgery is the fact that I still don't sleep comfortably on my "bad" ear.  I slept on my right side for 45 1/2 years and now I sleep on my left side and I still haven't fully adjusted 

I hope the iron pills help you.  In the meantime, perhaps taking some "me" time, if you can swing it, would be beneficial - it sounds like you have your plate full 

Jan

[Kaybo]

Mary~
I am 13 years out & I can can certainly see a difference in my energy level after surgery until now.  I guess a good comparison for me before surgery would be the Energizer Bunny (keeps going & going).  A lot of people think that I still do a lot (& I do), but they didn't know me before.  I attribute part of it to age as I was just really young when I had surgery & obviously I have aged since then.  I have to get my sleep or issues start to pop up...not viruses or anything, but balance, droopy eye, "thick" tongue and trouble with speech, etc.  I also get tired at night easier and it is literally like a brick wall - once I hit it, I ABSOLUTELY can not do another thing besides get to the bed.  I try to "plan" as best I can as far as what I will be doing - an example was that I went to dinner and a movie with a friend Thursday night so I didn't get up at 5:25 and go to the gym that day.  I seem to be more tired the last few weeks, but I am going to get my thyroid levels checked again this week and see if we need to adjust my medication (I had my thyroid removed).  I don't know if this was what you were looking for!

K   

[Jim Scott]

Mary:

Your question is pertinent because it covers an issue I think the majority of AN surgical patients have to deal with.  In my case, I suffered from fatigue before the diagnosis, surgery and radiation but I also feel as if I have less stamina, now.  I assume that the presence of the AN and my brain furiously trying to compensate for the loss of the vestibular nerve function was a large part of my pre-diagnosis fatigue.  Now, I attribute the trauma of the surgery and radiation along with my age (65) to be reasons for my - if not actual 'fatigue' - lack of stamina.  I always get a good night's sleep (7 or 8 hours) and yet, I fall asleep in front of the TV quite often - sometimes before 9 p.m.   Go figure.   

Realistically, the majority of AN patients are middle aged and that is a time when your body starts showing signs of 'wear and tear', especially if one is not in excellent health, which few of us are.  Then, you have a tumor that messes up your hearing or balance - or both, while your middle-aged brain frantically tries to adapt.  We know AN surgery is hard on the body's resources.  Your being anemic is certainly a major factor.  Add to that, the sheer physical activity necessary to parent two very young children, do housework, etc and you have a sure-fire formula for fatigue.  Of course, this is supposition on my part, not a medical opinion, but I believe it has merit.  I don't have a solution for your fatigue but your doctor might have an idea.  I would ask him (or her).  I trust you'll feel stronger, soon.

Jim

[JudyT]

Dear Mary........you my, dear have a lot on your plate aside from your AN issues. I am 68....4 years out from CK. the "thing is dead" but the memory (what's that?) lives on. I was a very fit 60 year old when my symtoms first started to appear...I was powering walking and at  the gym 6 days a week (with a trainer 3) weighed 130....chasing 2 teenage grandchildren and the life was GREAT. BOOM.....slowly....I got more tired....balance issues appeared....hearing, fatigue. and a host of issues. After being in the watch and wait and steadily going down hill I came out of denial and said self you better do some research and get on it now.......decided on CK at Stanford with John Adler...went for it....did it... glad I did.... BUT....I feel whether it be surgery or CK the darn thing just does it's own thing and it's up to us to deal with it. With the marvelous support of this site and CK site etc, etc, you can make a difference in your life by acceptance..... this is it. Now what? Sometimes it's sooooooooo depressing I can't stand it....can't walk right....drive... cook... entertain and much more. I'm ALIVE! I had 6 teenagers in my house on Sunday doing the Wii thing I bought....sports edition....couldn't find Wii fit for me....in my PJ's....their eating me out of house and home and I want to be in BED! What a fun time I had watching them....they left...I went to the bed........with a happy heart.....I was here to be with them....thanks to CK. It's worth all the effort...fear/frustration....issues....just to be here and with my grown children and them. I am a widow a small, tight family and SOOOOO blessed just to be alive. You will find YOUR way to ease it all in time....it won't go away but you will find a new path. You have 2 beautiful children who need you tired or not...get 'em on the bed with you.....that's what I do. My beautiful 1st garndchild (161/2) still gets on the bed with me. Tomorrow she's taking her learner's permit test etc. in MY new Beamer......it's only a car. Go figure..... I'm alive and you are too......you CAN do this. My best to you.......Judy

[ppearl214]

Hi Mary (and all).

Noted below is a link to a brochure we have noted here re: "Brain Tumors and Fatigue", written by Dr. Peter Black (Brigham/Womans) and Nancy-Conn Levin.  Research is showing the correlation of all types of brain tumors (benign and malignant), pre and post treatment. This link/brochure discusses how they go hand-in-hand as well as remedies to help counteract the fatigue:

http://anausa.org/forum/index.php?topic=3462.0

Prior to my AN diagnosis, I was already diagnosed with FMS (Fibromyalgia) and my fatigue levels have definately enhanced, even post-radiation. (Mary, I know you mentioned surgery treatment, but also noting here radio).  Diet, exercise and plenty of rest is truly the key to counteracting the fatigue. I hope you find the brochure informative.... It has certainly helped me (and many others here).

Hang tough... and be well.
Phyl

[Soundy]

I also have fibromyalgia and lupus to deal with so already had fatigue issues... but since surgery that
has multiplied greatly... went shopping today with husband and came home and took a 4 hour nap...
energy is kaput ... and sleep doesn't always restore it for me

[ernie h]

i've suffered from chronic fatigue 20 years pre an surgery and since surgery it's definetly worsened.expected i guess??

[Kathleen_Mc]

Yup.....got it
Even after 18 years lack of energy/fatigue is still an issue, this time of year it hits really bad too.....too much to do and not enough time to rest and waking up just as tired as when I went to sleep.
When I was childless I simply slept when I needed to (unless I was working) and that is the only thing that has ever helped
but now that I have children that is not possible and I end up feeling really guilty that I can't do all the things I'd like to with them and that feeling combined with the fatigue and the tears are on (not to mention the pig sty of a house 'cause I can't keep up with the housework).
I'm sorry I haven't an answer to the problem, it's nice to know others are the same though
Kathleen

[Dantheman]

Mary,

I'm also 45, and nearly two years out of surgery. I  still have chronic fatigue. I can sleep 8 hours and still must have a "deep rems" nap at around 3 'o'clock. If I miss a nap or two...I'm shot for a week. I find I must pace my activity levels. I feel much older than I really am. You're not alone.

Dan

[yardtick]

Dan,

I am the same way.  Two years since surgery but a few years older.  I think at this point I could sleep for days and still be tired.

Anne Marie

[NH_Leslie]

re chronic fatigue?  I am 49 years old and 13 months post surgery. I've had fibromyalgia and chronic fatigue for years but never felt such fatigue as I felt during my recovery after surgery.   It got a little better and I did go back to work where I have an hour+ commute.   Then I began to fall asleep at the wheel!  Imagine my surprise when I was diagnosed with narcolepsy!!!  I have my general neurologist for my headaches (since I had migraines before the surgery), a sleep neurologist for the narcolepsy and recently saw the neurosurgeon for my 1 year follow-up.  He has done over 500 of these surgeries and "has never heard of anyone getting narcolepsy".  Has anyone else had this issue?
Thanks for listening 
Leslie

[GeorgiaMei]

Hi all. I know I am way late to he discussion but just wanted to add that I am 32 and a year out from surgery. I was healthy and active before surgery.  Ever since, I have had pretty intense fatigue.  I sleep 10-20 hours per night and often nap in the day. If not, I am also dizzy, the pain increases, and I have trouble finding words.   I try and get some exercise each day, if just a walk, and have pretty severe headaches.  I was on aniti-epileptics post surgery, which increase fatigue, but now am on just pain meds.  I know those contribute too, as does chronic pain, but I wanted to post that it's not all age related.  It's pretty frustrating-the pain and the fatigue. I am thankful to have you all to vent to!   Karen

[cin605]

I am 42.I ran a cleaning bussiness right up till my surgery week & now i get up shower & get dressed & i am exausted ready to go back to bed.i got to sllep at 9pm & wake several times per night .The last month or two i have been getting very nauseous early in the day it reminds me so much of being pregnant but i am solo so i know its not possible.I am doing excersises & vest. rehab eating & all the stuff i should do.My head & neck are sooo sore.I am getting migranes that make me see double.
I have 5 appoinments comoing up at Dartmouth.I am sick of going from doc to doc repeating the same tests over & over.I see a neaurologist in my area next week becouse Dartmouth could not get me to theirs till end on july also dartmouth is 2 hours away which means 4 hours in the car which is like being on a rollercoaster w/ all the frost heaves & my eye tracking issues.
I just want to scream!

[yardtick]

I feel for you.  I hope you find some relief at the neurologist.  That's my next step also.  I'm going to see a new one.  The one I saw two yrs ago wasn't too helpful.

So many of US have the same complaints. 

I wish you well,
Anne Marie