Author Topic: Fatigue  (Read 5674 times)

Kathleen_Mc

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Fatigue
« on: May 04, 2006, 01:28:06 am »
Has anyone been diagnosed with either Fybromylagia or Chronic Fatigue Syndrome since finding out they have AN?
I am wondering because I am having great difficulty with fatigue and my family doctor just ran a bunch of blood tests, was unable to find a cause and is sending me on to see an Internist for further investigation, these were two things he suggested could be the end diagnoses and in the little bit of research I did tonight both of these could have an onset of soon after a physical illness or surgery.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Battyp

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Re: Fatigue
« Reply #1 on: May 04, 2006, 03:47:48 am »
I've often wondered if that isn't part of my problem...will be interesting to find out what your doctor thinks.

ppearl214

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Re: Fatigue
« Reply #2 on: May 04, 2006, 06:03:33 am »
Hi Kathleen,

When I first took ill back in 2001, part of my overall diagnosis was Fibromyalgia (FMS).  It's taken quite a while for all of my diagnoses to fall into place (yes, other issues other than the AN) so not sure how it falls in place with the AN.  It was noted as "secondary" to my other medical issues, so no, not diagnosed after my AN diagnosis but definately a factor in my healthcare.

For FMS, there are "pain points" (18 total) in the body that a Rhuemetologist can test. Rhuemetologist are usually the ones to make the diagnosis. I failed 17 of the 18 points. Many physicians feel it's a legit diagnosis, many don't. It's a difficult diagnosis to make and deal with. I do believe that the American medical community is beginning to recognize the diagnosis now, although many don't.

Fatigue certainly a major issue, as well as restless leg syndrome (RLS).  If given the chance, I sleep as much as I can, naps thrown in for good measure as well. Sleep aids at night to help out as well.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

klg31728

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Re: Fatigue
« Reply #3 on: May 04, 2006, 06:52:10 am »
I haven't been diagnosed with FM or CFS, but I have had major fatigue problems since my surgery in 1997.  I work 8-5 and am totally exhausted when I get home, then when I get in the bed I hurt all over and have trouble sleeping.  I have done a self-test for the "18 pain points of FM" and I really don't think that is what it is. 

Somewhere I read that because of the balance issues that you have with AN, it takes extra energy to compensate, thus causing the fatigue.  Makes sense - I don't know if it is legimate.  Has anyone else heard that?
Kathy G.
Surgery 7/97
CSF Leak and another surgery 12/97
regrowth 1/2000
Radiosurgery 2/2000

Cheryl R

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Re: Fatigue
« Reply #4 on: May 04, 2006, 06:58:42 am »
 Phyl.       I was talking to friend with fibromyalgia recently and she monitors some chat room and fibromyalgia boards and was saying how she is taking guaifensin,which is a cough expectorant and having very good results with this.   She is off some meds she was previously taking.   It sems to have few side effects.      Very interesting.
                                                                 Cheryl R.
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

ppearl214

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Re: Fatigue
« Reply #5 on: May 04, 2006, 07:55:05 am »
Hi Cheryl and thanks! :)

I thought guaifensin was basically a cough med with codeine... will have to check with PapaPearl on that one. I know I've taken it before when I've had bronchitis, especially to help me sleep.  I've also used Melatonin (3mg) as a more "natural" way to help sleep as well.

FMS (Fibromyalgia Syndrome) is a very weird diagnosis. Deep pain in the body/muscles but not the joints.  Have had some really weird tests done on me for it. Also had blood/labs done to check my anti-ANA and anti-DNA to rule out Lupus (my sister has Lupus, so they wanted to cross check).  My anti-ANA is off, my anti-DNA is normal.. go figure, eh? I'm a bit lop-sided!  ;)

Anyway, over time, I have just learned to deal with it. When I get tired, I listen to my body and rest. When the RLS kicks in at night, I try a sleep aid to help. 

Here's some links for FMS that I use and also subscribe to monthly newsletters for updates. Seems they are making some strides in trying to understand FMS.. in the meantime, I just deal with it... heck, what else am I going to do, right? :)

http://www.fmaware.org/patient/coping.htm

http://www.fmnetnews.com/

I've also been reminded that the following are key in dealing with FMS:
1. Rest
2. Exercise
3. diet (did you know processed sugar enhances FMS symptoms?)

Many folks that have FMS will also suffer from some sort of depression, so that needs to be addressed as well. 

Hope you find this informative.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Kathleen_Mc

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Re: Fatigue
« Reply #6 on: May 04, 2006, 11:33:17 pm »
Kathy: I work 12 hours shifts, 90% of the time during the night and at the end of the shift I am surprised I drive home and make it to my bed before I fall asleep. On my days off I am so wiped I can't seem to get myself to do more than is absolutely necessary and this is making me feel so guilty....I have a daughter at home, she's 4 and loves to do lots and I just don't have it in me most days....go to the park etc. and every afternoon I have to nap for at least 90 mins. and during that time she is sooooo good about leaving me be, occupies herself and doesn't get into any trouble. By 9 pm on my days off I'm ready for bed.
I get so irritable some times that there's things that need to be done and I just want to sleep. Example: I get home around 8 am and my family has slept in so instead of going right to bed I have to pack lunches and get them to where they need to be before I can settle to bed. I get angry at my husband because he slept in and then I feel guilty (he never has been a morning person and often is up until 2 or 3 am working at home). This really bugs me because I am so tired I feel like I am going to fall down and yet this is just everyday life and I shouldn't have to go right to bed when I get home, I shouldn't be that tired!
I just don't think my energy level is "normal" and I wonder if it is just the effects of the surgeries, loss of balance etc or if indeed there is something else at play here. I know FM and CFS are real illnesses but there is really no simple "cure" and I am hoping there is something else wrong, something more simply treated that this Internist can find wrong.
Part of me is thinking I just need to "get on with it" and yet I know I am not lazy and it's not just a matter of that, part of me thinks I can go on with my life as busy as it is and that something has to change but what????? I have to work for the money, I have a young family to support and to raise......
Thanks for listening folks
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

matti

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Re: Fatigue
« Reply #7 on: May 05, 2006, 12:23:09 pm »
I had my surgery in 1998 and since then have such severe fatigue. I was told that it had something to do with the loss of balance as well. Just a short drive to and from the grocery store, I come home very tired.  God bless you all that have full time/part time jobs, I don't know how you do it. I push myself everyday and try to work past it. Somedays I think I conquer it and then it will definetly catch up with me. This problem has really affected my "type A" personality status LOL.

I feel guilty as well and I am sure those around me get tired of hearing how tired I am.  The doctors have told me it is possible that FM is caused from trauma/surgery. Some have told me it is hormonal. I don't know what to believe, but what I do know for sure is something is going on and I am damn tired of it. (sorry for the pun)

Does anyone get tired after reading for a few minutes? Sometimes I feel wiped out and have to take frequent breaks from the computer or books. My neuro-opthomologist tells me it is because my AN side eye works slower than the other, causing my brain to work harder and that is why I have fatigue.  ??? ???

Take care Kathleen and sending you a hug

matti

3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

ppearl214

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Re: Fatigue
« Reply #8 on: May 05, 2006, 01:35:04 pm »
I think the key, if looking at a potential FMS diagnosis, is pain deep in the muscles (not joint pain) as well as fatigue.  CFS would be a bit different as it pertains to the pain.  I have all-over pain and deal with certain meds to numb the pain. There are tests for CFS as well that a rhumetologist can do.

Fatique from any AN treatments (micosurgery and radiosurgery) can also occur, as many of us here already know.  Since I'm off the decadron, I'm quite fatigued as well and a real effort for me to move, even just to walk the dog.  In speaking with my trainer, he shared with me a way to increase metabolism to help bring on higher energy and help to alleviate fatique. Many mini-meals per day, walking (to start) and stretching.  Good night's sleep as well. Please also note that any emotional "distress" (ie: depression and such) will also bring on fatigue.

Just sharing... hope you all feel better sooner than later. Want you all well! :)
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

tony

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Re: Fatigue - AN related
« Reply #9 on: May 06, 2006, 01:13:06 am »
 the human body has two Ballance nerves -one left one right on or near the hearing nerve.
if an AN grows on the hearing nerve it is not unusual for the balance nerve to be disturbed as well -this is why many of  experience  the drunken walk. if one of the balance nerves is completely knocked out or damaged either from the AN or treatment of
 - the body can run on the single good side.
the body compensates for the loss by using eye judgments (subconsciously) about distance to nearby objects to complete the balance picture. whilst we are not aware we are doing this, it is nonetheless very tiring. this process also explains why so many struggle with balance in Poor lighting conditions- no visual point of reference.  In terms of the tiredness I have noticed that whilst I may feel very tired from overworking the  balance system - it does seem to reset quite quickly - sometimes a quiet sit down with the eyes shut just for 10 minutes seems worth 2-3 hours sleep. the other option is to start to drive the balance a bit harder under controlled conditions ie in the gym or take up ballet - or anything that requires a conscious attempt to balance correctly. clue - by controlled conditions - I don't mean try it out at the top of a 20`ladder - you may get more sleep than you bargained for !
best regards
Tony

Captain Deb

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Re: Fatigue
« Reply #10 on: May 06, 2006, 08:20:37 pm »
I totally agree, Tony.  You have to fight for your balance under controlled conditions--a sort of conscious self-therapy.  The more finely tuned your residual balance system, the less fatigue. Getting over that first hump is brutal though.  A lot of us just want to give up.
I just decided I wanted my life back so badly, I was willing to have headaches and be tired alot of the time to get it!

Captain Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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Battyp

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Re: Fatigue
« Reply #11 on: May 06, 2006, 09:28:12 pm »
Can you guys see me in a tutu?  I"m thinking Laz should wear one  LOL

I do agree..it's been a constant battle getting my balance where it is.  If not for daily therapy I know my energy level(which isn't great) and my balance would still be a lot to deal with!


Windsong

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Re: Fatigue
« Reply #12 on: May 07, 2006, 12:10:32 pm »
I was diagnosed with fms about a year or two after a traumatic fracture and surgery to set it right. A rheumatologist diagnosed it from trigger points and other symptoms. Fatigue wasn't a huge one at the time I don't think but then I wasn't doing much as was in a cast for a year and then concentrating on overcoming the nerve condition that developed from that and learning to walk  again etc. So I ignored the fibro mostly, easy enough for me to do as the first issue kept me occupied 24/7. I did follow the suggestions re diet however. (avoid sweets, processed foods, sugars etc. concentrate on fresh veggies, fruit, chicken, fish etc. and avoid things like weiners, sausages, bacon etc.)About a year after the fibro diagnosis, i had what was called a major viral attack which affected my balance big time. Fatigue was major too. It was years after that, that my An was diagnosed. In the interval I came across the VEDA site and read much on their old board which explained the fatigue factor from the vestibular issues. (along with other things than fatigue too... for me, it was a great site to have found after years of wondering about a number of issues i experienced).

Now, I'd love to have an answer for the drippy eye and the drippy nose as my head wasn't cut open. I had the fsr treatment.

I have a few friends who have fibro too and the severity of their symptoms varies. Most agree that resting, exercise, and diet help.  I find it weird that we grew up together, lived in the same area, went to the same schools, though.

Sun21

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Re: Fatigue
« Reply #13 on: May 07, 2006, 08:02:53 pm »
If you're concerned about fatigue issues, you may want to do some reading on "Adrenal Fatigue", "Adrenal Exhaustion" or "Adrenal Insufficiency". 

Be aware, however, that there is no ICDN code for this, so the medical community do not recognize this as a "disease". Rather, some consider it a "sub-clinical condition", if they even recognize/acknowledge it at all.

You may also want to do some research on hormones and the endocrine system as it relates to adrenal funtion.

Good luck.

Windsong

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Re: Fatigue
« Reply #14 on: May 07, 2006, 09:04:53 pm »
Adrenal insuffiency sounds like a friend of mine who has addisons disease...... he was pretty sick until diagnosed. Then was put on meds. Maybe a year later he had a hip replacement. And he hadn't even reached 50 yr old and up until the symptoms for addison's he was kinda  the really healthy type.

Always good to have symptoms checked out by a doctor until one gets an answer.

Thanks for this reminder for me.

PS whats an icdn code and why wouldn't addison's (adrenal insuffieciency) have a code? Thanks.

Windsong