fATIGUE anyone

[dawnnoel]

I had been sooo tired all summer and when was diagnosed with an 3mm AN  asked my Dr if this could be the cause of my fatigue? He replied no. I seem to remember reading somewhere that someone posted fatigue as a sympton. Would be interested to hear if anyone else has this side effect.

[MaryCPereira]

I also have a small AN, and I'm fatigued pretty much all of the time. Drs have told me "no" for 99% of my symptoms. So, who knows really. I'm bitter right now if you can't tell haha. But, I'd say, logically, since we are all on this site, and so many of us have fatigue, that there's a good chance it's connected! So, I'm with you! :-)

Now, if we could just get the drs on board! 

I'm assuming you're in W&W? Hope you're doing okay!

[Sheila1977]

I believe the fatigue comes from our brain working so hard to adjust to the balance and hearing issues that are directly associated with the AN.  I also don't understand why doctors don't make the connection.  Regardless of what the doctors think, I hope you give yourself a break and get the rest you need.  At least in my case, I found that stress and pushing myself to do it all gave me headaches and fatigue and that just can't be good for recovery. 
s

[jockieau]

I am incredibly fatigued. I wasn't when first diagnosed - it's got much worse over the past few months as my "wonkiness" has increased. I think the doctors are WRONG! 

[MK30]

I had awful fatigue for years before my AN was discovered and then removed.  No fatigue after surgery.

[PaulW]

Fatigue is a very common symptom for people with a vestibular disorder.
We have an AN which means we have a vestibular disorder...

While AN's are often called "Brain Tumors", at 3mm what you have, would be more accurately called a "tumor of the balance nerve"...
A small tumour can be just as troublesome as a large tumor, in fact sometimes when they get larger the balance / hearing nerve dies off and your symptoms can reduce!

Nice one pager on vestibular disorders, which mentions AN's
http://www.ptrehab.com/pdf/vestibular_disorders.pdf

[skipg]

Trying to find a document written as to why we suffer fatigue. The article addresses the balance system our body uses to keep us erect and not wobbling. Imagine position sensors in our feet and joints that feed information to our brain. Optical sensors that give relative position to our brain and a level type system in our ears that provide lateral position sensing keeping us level. Our brain takes all the inputted information from these three systems and is constantly making computations to help us walk, not to have a bubble head, and to keep our eyes from cycling left to right. When the vestibular system is disturbed the brain makes up for this compromised system by making millions of additional computations with the remaining functioning inputs to help keep us erect. This extra brain activity is ultimately what causes us to become fatigued. Now if I can only find the article that makes this clearer.
I do know that the more mental activity I do during the day, along with moving around, the worse I feel. I used to blame it on being tired all the time, but now I know it is fatigue related.
Skip

[Kaybo]

I've been at this AN thing for almost 17 years now & I guess I have been lucky in that I have had several DOCTORS (neurologist & other Drs) tell me that it is to be expected that I will be much more tired - ESPECIALLY in the evenings/at night. One even told me to always plan really important, "thinking" things of a morning when my brain is the most rested and alert. Unfortunately, for me (I had a very large tumor and complications), I still get very tired. However, over the years, I have learned to schedule & pretty much work around that - its second nature for me. I have 3 VERY active girls (I had all 3 AFTER my AN surgery/stroke) and I am very involved at my church & in my daughters' schools. 

I'm sorry that your doctors are not admitting how the fatigue can be caused by an AN, but it is a very real thing. The good news is that it DOES get better (a LOT better for most!) and can certainly be worked around!!

Good luck!
K 

[Suu]

... ... I have had several DOCTORS (neurologist & other Drs) tell me that it is to be expected that I will be much more tired - ESPECIALLY in the evenings/at night. One even told me to always plan really important, "thinking" things of a morning when my brain is the most rested and alert. Unfortunately, for me (I had a very large tumor and complications), I still get very tired. However, over the years, I have learned to schedule & pretty much work around that - its second nature for me.

Good luck!
K 

I didn't realize this until I read it. What a light-globe moment I had.  Mornings really are pretty good for at least the first couple of hours and I've now got my planner on the nightstand to write in.  I'll plan my goals for the day as soon as I sit up in bed and see what I can achieve.

Thankyou

Suu xxoo

[Kaybo]

Suu~
Also, the first of the week is usually better.  When i was still teaching full-time (& had a little baby at home), my principal told me that she could always tell what day of the week it was by how much my eye was drooping and my speech!!  Needless to say, I was toast by Friday - BUT, that was just one of my things that I learned...we rarely EVER made plans on Friday night because I was usually in bed by 6 or 7 - we just planned dates &/or outings for Saturday!   

K   

[rupert]

Ok here it is folks.


2012, 06:56:40 PM »
Reply
Quote
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Brain Tumors and Fatigue
By Nancy Conn-Levin, M.A.
Medical Advisor: Peter McL. Black, M.D., Ph.D.
Sponsored by the Brain Science Foundation
Introduction – why this guide is needed
Fatigue is a common complaint among people who have been diagnosed and treated for different varieties
of brain tumors. Unlike the usual physical and emotional sensations of “being tired” that a healthy person
might experience, fatigue is a debilitating, persistent loss of energy that is not relieved or improved by sleep.
This unusual, whole body weariness can have a profound effect on a person’s quality of life. Fatigue can
vary in intensity from day to day, or at different times of the day. Its effects are unpredictable and may last
for years following brain tumor treatment. Patients affected by fatigue describe overwhelming feelings of
exhaustion that interfere with their ability to carry out daily activities.
The purpose of this patient education guide is to provide an overview of brain tumors and fatigue, along with
suggestions for coping techniques that can be used by individuals who are affected by this condition. As
with any health concern, please consult your personal physician and other members of your healthcare
team for specific guidance regarding which of these techniques might be useful for your unique
circumstances.
What are some possible effects of brain tumor related fatigue?
Fatigue can be manifested in a variety of ways. Here are some examples of physical, social, attentional,
spiritual or emotional changes that may accompany brain tumors and their treatments:
Physical
♦ Reduced energy level
♦ Diminished strength or endurance
♦ Difficulty sleeping
Social
♦ Changes in roles or relationships
♦ Altered responsibilities within family
♦ Reduced ability to perform job responsibilities
♦ Changes in sexual relationships or sexual response
♦ Reduced interest in affection
Attentional
♦ Difficulty concentrating
♦ Inability to understand new information
♦ Being distracted by sensory input (i.e., noise, activity, etc.)
♦ Feeling overwhelmed by daily tasks
♦ Finding that typical activities of daily living are more difficult to do
Spiritual
♦ Questioning one’s purpose
♦ Disinterest in previous religious or spiritual practices
♦ Feelings of “why me” related to brain tumor diagnosis
♦ Indifference about prayer, meditation or other mindfulness
Emotional
♦ Changes in mood
♦ Reduced feelings of self-esteem or confidence
♦ Diminished sense of control about daily life
♦ Fears or anxiety about the future
♦ Concerns about body image changes (i.e., facial differences, hair loss, etc.)
When discussing any of these symptoms or feelings with your healthcare team, it is important to identify the
factors in your life that might be related to fatigue. Some physicians and nurses encourage patients to
categorize their levels of fatigue using a numerical scale (0 to 10), similar to the one commonly used to
describe levels of pain. In this instance, 0 would be “no fatigue” and 10 would be “the worst fatigue you
could imagine.” Using this type of numerical scale and keeping notes about your perceptions of fatigue also
allows fatigue levels to be more easily monitored over time.
Why does fatigue develop?
A variety of medical conditions and other factors can cause fatigue, including anemia, side effects from
medications, insomnia, depression, dehydration, poor nutrition, and chronic pain. For this reason, anyone
experiencing symptoms of fatigue should first have a thorough medical evaluation to identify possible
reasons for their symptoms, which might be unrelated to their brain tumor. Sometimes addressing other
medical issues can reduce or even eliminate fatigue.
Once other factors have been identified and possibly treated, it’s time to approach the effects of fatigue on
an individual basis. By learning about coping techniques for each specific symptom of fatigue and applying
them one at a time, the overall impact of fatigue might be lessened. Although fatigue can affect every
aspect of a person’s life, many of these effects may be improved by the use of coping techniques.
What are some self-care techniques that can improve fatigue?
The first and most important step toward coping with fatigue is to recognize and accept this as a valid
medical condition. Talking to your doctors and nurses will help you define how fatigue impacts your life,
including identifying the specific circumstances that contribute to your fatigue. Once you have focused on
the individual factors related to your fatigue, it is easier to apply distinct coping techniques. Here are some
common circumstances that can intensify fatigue and suggestions for improving those conditions.
NUTRITION AND HYDRATION
Even for healthy people who are unaffected by brain tumor issues, getting adequate nutrition and staying
hydrated can be a challenge. For anyone with a chronic health concern -- including people diagnosed with
brain tumors -- this can be even more challenging.
Many people find it easier to meet their nutritional needs by planning five or six small meals throughout the
day, rather than eating larger amounts less often. Suggestions for healthy eating including utilizing all food
groups, with an emphasis on lean protein and complex carbohydrates, combined with small amounts of
healthy fats. By filling most of your plate with vegetables, and using the remaining space for protein and
whole grains, it’s easier to maintain a healthy nutritional balance. Many nutritionists emphasize choosing
fruits and vegetables in a rainbow of colors, to maximize the nutrients in your food choices. Incorporating
healthy snacks when needed can be another source of extra nutrition for people with diminished appetite.
For people affected by nausea (from chemotherapy, radiation or other causes), palatable meals and snacks
are especially important. Dietary choices like yogurt, milkshakes, dried fruit, whole grain muffins, pudding,
cut up vegetables and dip, fresh fruit or other well tolerated foods might be more easily consumed.
Ironically, sometimes an empty stomach can promote increased feelings of nausea. Keeping “portable”
snacks like cereal bars or peanut butter crackers available at all times can be especially helpful in these
circumstances.
Drinking enough water throughout the day is also important for many bodily functions. Many healthcare
professionals suggest drinking six to eight glasses (about two liters) of water daily. Choosing water as a
beverage with meals, while avoiding dehydrating beverages with caffeine (i.e., coffee, tea, cola drinks, etc.)
can help you consume adequate fluids. Keeping bottled water handy or taking breaks every half-hour or so
for a glass of water can also help prevent dehydration.
EXERCISE
To some people who are challenged by fatigue, the idea that exercise can be helpful seems impossible.
However, inactivity actually increases levels of fatigue. This can be seen during hospitalization or other
periods of prolonged bed rest when people lose physical conditioning. Talk to your medical team about
which types of gentle exercise might be useful for your individual circumstances. Many people find walking
easy to incorporate in their daily schedule. Others may choose yoga, Tai Chi, circuit training, fitness
classes, swimming or water exercise, bicycle riding or weight training. Even people with physical limitations
can find some way to incorporate exercise into their daily lives. Consulting with a physical therapist can be
helpful when factors like altered balance, weakness, or partial paralysis are involved.
SLEEP AND REST
Getting adequate sleep is an important part of managing fatigue. While daytime naps can be helpful as
well, it’s best to limit naps to 45-60 minutes daily so they do not reduce nighttime sleepiness. Going to bed
and waking up at the same time each day helps your body develop a regular sleep routine. Keeping your
bedroom at a comfortable temperature (neither too hot nor too cold) can also be helpful. Many sleep
professionals suggest limiting bedroom activities to sleep and sexual intimacy. This promotes a restful,
relaxed atmosphere in the bedroom, which can help prevent insomnia. Avoiding beverages containing
caffeine, and eliminating any mentally or physically stimulating activities before bedtime can also promote
restful sleep. Sometimes the effects of watching a suspenseful movie or exercising in the evening can
make it difficult to relax and fall asleep. Some people enjoy a hot bath or shower before bedtime, or a light
snack. If these or other choices make it easier for you to sleep soundly, then make them part of your nightly
routine. Talk to your doctor if you have difficulty falling asleep or sleeping through the night on a regular
basis. There may be other medical conditions involved, which might be managed with the use of
medications or certain adaptive techniques.
ENERGY CONSERVATION
For people experiencing fatigue, one of the most important coping techniques is learning to conserve and
manage their limited amount of energy. Energy conservation includes using practical techniques to
carefully plan activities and prioritize. By making lists and deciding what is most meaningful on an individual
basis, you can actively decide to do those activities that are most important to you. Learning to use your
“free time” wisely and performing those tasks that must be done will allow you to feel a sense of
accomplishment, even with a limited schedule. Being efficient and combining similar tasks, or those in the
same geographical area, will also conserve time and energy. In addition, the telephone and email can be
beneficial tools to find information, to make appointments, and to communicate with family and friends.
One of the most important parts of energy conservation is learning to pace yourself. Regardless of how
long ago your brain tumor diagnosis and treatment occurred, it’s important to remember that healing is not a
competition. Some people resume their pretreatment level of activity within a matter of weeks. Other
people never return to their prior level of activity and functioning. Whatever your personal condition, be
patient with yourself, and allow yourself to take one step at a time. Each accomplishment in your daily life –
large or small – is significant.
Another very important part of energy conservation is learning to delegate. By asking for help from family
and friends -- and being willing to accept help from others -- you can use available energy for those tasks
which are most meaningful to you. When asking for help, being specific about concrete responsibilities will
make the process easier for both you and your helper. Some examples:
♦ “Can you please stop at the market and pick up the items on my grocery list?”
♦ “When you come over to visit, could you please fold a load of laundry?”
♦ “Thanks for your offer to help. Can you bring lunch for me on Tuesday?”
♦ “I need a ride to physical therapy on Wednesday. Can you please take me there?”
♦ “When you go to the post office, can you please pick up stamps for me?”
For many people, the idea of asking for help is very difficult to accept. One way to have a more positive
outlook about this is to imagine switching places with the friend or family member whose help you are
requesting. If they were depending on you, how would you feel? Remember that people who care about
you will want to do what they can to help. Letting other people provide help makes everyone feel good.
RESTORING ATTENTION
Simple coping techniques can be helpful for attentional fatigue, as well as for the spiritual manifestations of
fatigue. Some of the most effective techniques for restoring attention include activities that increase contact
with the natural environment. Practical examples of these and other techniques to restore attention would
be activities such as:
♦ walking or sitting outdoors
♦ gardening or tending indoor plants
♦ spending time with pets
♦ watching birds or other wildlife
♦ knitting, needlework or other crafts
♦ meditation or relaxation exercises
♦ any activity where you “lose track of time” and relax
By making these relaxing activities part of each day’s schedule, the symptoms of attentional fatigue can be
diminished. These activities also promote an increased quality of life for many people.
STRESS MANAGEMENT
A variety of techniques can be beneficial in reducing stress by helping to relax the body and mind. Here are
some of the best known ways to cope with stress overload:
♦ Breathing Exercises: simple patterns of breathing, in combination with taking deep breaths, help
increase oxygen levels throughout the body
♦ Imagery: learning to visualize relaxing scenes can help mentally transport you to a place where you feel
calm and comfortable
♦ Relaxation Exercises: specific techniques such as progressive relaxation (systematically relaxing each
part of the body from head to toes) can relieve the physical and emotional effects of increased stress
♦ Journal Writing: keeping notes about your feelings and your fatigue symptoms will help you have a
better understanding of how this condition affects your health. By noticing patterns in the time of day or
activities that seem to be associated with increased fatigue, you can choose to alter some behaviors as
a way of reducing fatigue symptoms. Consider writing your response to questions about how illness has
affected your life in different ways.
♦ Intellectual stimulation: reading good books, exploring the Internet, playing games which require thinking
(i.e., bridge, Scrabble, rummy, etc.), doing puzzles, listening to music and other similar pastimes can
keep your mind active while helping your body to relax.
Of course, all of the self-care suggestions mentioned earlier (i.e., improved nutrition and hydration, gentle
exercise, adequate sleep and rest, etc.) will also have a beneficial effect on managing stress.
SUGGESTIONS FOR CAREGIVERS
While the focus of this guide is on helping brain tumor patients (currently being treated) and brain tumor
survivors (those who have had brain tumor treatments in the past), many of the health promoting
suggestions will also be applicable for family members or caregivers. In addition to emphasizing positive
self-care, it is also important that family members are supportive to the person who is coping with brain
tumor related symptoms. Although the effects of brain tumor related fatigue often have an impact on family
members, it is meaningful to remember that the person coping with these health issues faces the greatest
challenge.
In conclusion
If you are coping with the effects of brain tumor related fatigue, please remember that you are not alone!
Many other people who have survived various types of brain tumors and different treatments are also
affected by chronic fatigue. By using the coping techniques described in this guide, applying positive selfcare,
and working closely with your healthcare team to develop a personalized coping plan for your own
fatigue, the effects of this common health issue can often be reduced and an improved quality of life can be
restored. Notice the blessings that each day brings and let them be part of your celebration of survival.
About the authors
Nancy Conn-Levin, M. A., Health Educator, has written patient education materials and resource guides
for healthcare professionals. She is a member of the Advisory Board of the Brain Science Foundation, a
board member of The Healing Exchange BRAIN TRUST, and co-founder of the Monmouth and Ocean
County Brain Tumor Support Group, Inc. She is also a brain tumor survivor.
Peter M. Black, M. D, Ph. D., Medical Advisor, is Neurosurgeon-in-Chief, Brigham and Women’s Hospital
and Children’s Hospital, Boston, MA, Chief of Neurosurgical Oncology, Dana Farber Cancer Institute,
Boston, MA, and Franc D. Ingraham Professor of Neurosurgery, Harvard Medical School.
Acknowledgments
Funding for the development and distribution of this guide, as well as other educational materials, has been
contributed by The Brain Science Foundation.
http://www.brainsciencefoundation.org
Copyright © 2005 by Nancy Conn-Levin, M.A.
All rights reserved.
Additional copies of this booklet are available by contacting:
Communications Coordinator
Department of Neurosurgery
Brigham & Women's Hospital
75 Francis Street
Boston, MA 02115
For more information about brain tumors, contact these charitable organizations:
American Brain Tumor Association
2720 River Road
Des Plaines, IL 60018
Toll free: 800-886-2282
Telephone: 847-827-9910
Fax: 847-827-9918
http://www.abta.org
Brain Tumor Foundation of Canada
620 Colborne St., Suite 301
London, Ontario, Canada N6B 3R9
Telephone: 519-642-7725
Fax: 519- 642-7192
http://www.braintumour.ca
The Brain Tumor Society
124 Watertown Street, Suite 3-H
Watertown, MA 02472
Toll free: 800-770-8287
Telephone: 617- 924-9997
Fax: 617-924-9998
http://www.tbts.org
Central Brain Tumor Registry of the U.S.
244 East Ogden Ave
Suite 116
Hinsdale, IL 60521
Telephone: 630-655-4786
Fax: 630-655-1756
http://www.cbtrus.org
The Healing Exchange BRAIN TRUST
T.H.E. BRAIN TRUST
186 Hampshire Street
Cambridge, MA 02139-1320
Toll free: 877-252-8480
Telephone: 617-876-2002
Fax: 617-876-2332
http://www.braintrust.org
National Brain Tumor Foundation
22 Battery Street, Suite 612
San Francisco, CA 94111-5520
Toll free: 800-934-2873
Telephone: 415-834-9970
Fax: 415-834-9980
http://www.braintumor.org
Disclaimer
This guide is an educational resource about brain tumors and fatigue, and it is provided for informational
purposes only. It is not a substitute for medical advice or treatment of any kind. Individuals are strongly
encouraged to seek out appropriate medical advice and treatment from their physicians.
Telephone numbers and other contact information for organizations listed above may be subject to change.
Online Support and Information
Free online groups are provided by The Healing Exchange BRAIN TRUST, a charitable organization that
helps people affected by brain tumors and related conditions. More than two thousand brain tumor
survivors, family members and others who are interested in this topic exchange email messages, sharing
support and information with each other. To learn about the BRAINTMR list, The Meningioma List, TOPS
(teens of parent survivors) or other online groups, contact:
info@braintrust.org
Additional information about these groups is also available at this web site:
http://www.braintrust.org/support.htm

[skipg]

Thanks Rupert for all the info. I love reading and researching. Everything in the article is not only informative but helpful if we would only practice what we learn. But...you have just overloaded my brainwaves and I think I will take a nap.

Thanks again for the info.
Skip

[dawnnoel]

WOW What a help you all have been! Thanks.

[GaleWynne]

I just wanted to add my 2 cents - yes, it is the AN, for the reasons the various responders documented.

And I also want to say quite loudly - the doctors ARE WRONG. They are wrong to say it is NOT the tumor.  It is the tumor. 

I did similar research last year and came the conclusion that I should be treated like a person that has brain injury.

Laura Bruno's book - If I Only Had a Brain Injury - is very helpful.

I also would recommend regular myo-fascial massage. I believe it caused my small tumor to shrink just a bit, which when you trying to avoid going from 2 MM to 3MM is a big deal (A 3MM is a big deal to me, since my sister was disabled by a 3MM - she could not walk properly, etc. I realize everyone's tumor is different, however, my situation is following the similar course as my sister's, except it is going in reverse now for me, hopefully it will continue).

Forgive my yelling.  Sometimes it is hard to be patient when one is the patient.

Sincerely,

Gale

[Suu]

KAYBO - You're spot on with saying the end of the week really is the end of the weak.  Today I saw my GP and he could barely take my pulse due to my shaking. I couldn't see or talk straight either. (The appointment was at 2.30 this arvo) 
I tried motionsickness tablets with antihistamine today as they seemed to work while I was trying to gain balance post-op at home. 2 years later and they didn't help at all.  He's sent me a referral back to my ENT for revision.

RUPERT - Thanks for those links and the information on here so we don't have to go searching for ourselves. It's appreciated.

GALE - some doctors think that we self-diagnose with Google LOL I'm sure most of us know when something isn't quite right and we need to stand up for ourselves.
Yell as much as you like - most of us are half deaf anyway 

Happy days are going to be here again - I hope. 
Suu xxoo