Living With Chronic Fatigue Syndrome
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Transcript of Living With Chronic Fatigue Syndrome
Presenter: Nadiya Destiny
Group: Agape Learning
http://agapelearning.net
My Story
Tired all the time Diagnosis Treatments Facts About CFS Question and Answers
Who I Am Jennifer Kraft 29 years old Former special
educator Former Education
Technology Facilitator
Business Owner CFS Sufferer
Beginnings of My Disease Not sure when it started Signs point to massive dosages of
PrednisoneAt one point, between 6 and 9
Hydrocortizone shots in one yearConsistently off and on Prednisone, then on
highest dosage for 6 – 9 months Put on 90 pounds of stubborn weight
Life Pre-CFS
During the three years post-college graduation, IWas involved with three church choirsWorked with the youth at my churchHeld a second jobTook classes to get my Master’s DegreeParticipated in several community service
projects
Slow Down
Eventually, IQuit my second job – blamed it on classes
and churchQuit the bell choir – blamed it on classesStarted arriving later and later too work
○ Was disciplined for itStarted arriving late for all my activitiesSlept as soon as I got home until I had to
leave again – blamed teaching pre-k
New Job – Starting Fresh
I blamed a poor work environment and burn-out and got a new job.
Completed my Master’s Program Accepted a position in Baltimore as an
Education Technology Facilitator at a High School for Children with Special Needs – a job I loved and miss!
Started Out Well Good for the first
year I started getting tired
at the end of the first year, but blamed it on a bug that I got and couldn’t get rid of.
Youth Gathering
Attended ELCA Youth Gathering in Texas July 2006Slept A LOT
○ Blamed the heat○ Blamed the volunteer positions I had
Help line 4-12 midnight first weekBus Greeter 5 – 10 am second week
It was all downhill after this event.
Occupational Therapy Conference At the end of September 2006 Traveled to Kentucky for a weekend I missed my first flight My co-presenter was sick and we
shared a room When I returned I was sick
Coaching Volleyball Coached volleyball
at my school If I worked out with
the kids before a game the next day I wouldn’t be able to wake up to get to work on time
Final Straws Trip to the Credit Union
Campus of Johns Hopkins UniversitySteps+ Warm Day+ Half-way Across
campus = Inability to wake up next morning until 1 pm
Approached by bossMy concerned boss brought me in because
she was concerned○ Wasn’t arriving on time○ Work was slipping
Doctor Appointments
PsychiatristYou are doing well…nothing mentally wrong
Social WorkerYou are doing well…nothing mentally wrong
DoctorPoked and prodded for everything2nd Sleep Test – turned out better than the
1st
Blamed my weight
Golden Girls Diagnosis came when watching a Golden
Girls episode Dorothy is “Sick and Tired” and visits all
sorts of doctor’s Was told she was crazy Then finally given the CFS diagnosis Had seen it a number of times and
disregarded One time while home sick watched it and it
sunk in
Golden Girls Episode Synopses 1. Sick and Tired Part 1 :
Dorothy begins to feel rather sick for no apparent reason. She visits numerous doctors who treat her as though she is crazy since they are unable to diagnose her malady. Simultaneously, Blanche begins to write a romance novel.
2. Sick and Tired Part 2 : Finally, Dorothy is able to locate a doctor who is sympathetic to her problem. He explains to her that she does, in actuality have a malady entitled Chronic Fatigue Syndrome, that has just been discovered. Later, when the girls are at a restaurant, Dorothy encounters one of her previous doctors and embarrasses him in front of the entire restaurant when she delivers her sermon against the conceit and unwillingness of some doctors to believe their patients when they are truly ill.
This is Me!
Researched CFS on the Internet Read numerous sites Discovered that the list of symptoms
matched me Relieved and scared
8 Primary Symptoms of CFS cognitive dysfunction, including impaired memory or
concentration postexertional malaise lasting more than 24 hours
(exhaustion and increased symptoms) following physical or mental exercise
unrefreshing sleep joint pain (without redness or swelling) persistent muscle pain headaches of a new type or severity tender cervical or axillary lymph nodes sore throat
Source - http://www.cdc.gov/cfs/cfssymptomsHCP.htm
More Symptoms of CFS irritable bowel, abdominal pain, nausea, diarrhea or bloating chills and night sweats brain fog chest pain shortness of breath chronic cough visual disturbances (blurring, sensitivity to light, eye pain or dry eyes) allergies or sensitivities to foods, alcohol, odors, chemicals,
medications or noise difficulty maintaining upright position (orthostatic instability, irregular
heartbeat, dizziness, balance problems or fainting) psychological problems (depression, irritability, mood swings, anxiety,
panic attacks) jaw pain weight loss or gain
Source - http://www.cdc.gov/cfs/cfssymptomsHCP.htm
Strong Statements About CFS The fatigue is “a severe, incapacitating
fatigue that isn't improved by bed rest and that may be exacerbated by physical or mental activity. It's an all-encompassing fatigue that results in a dramatic decline in both activity level and stamina.”
“Function at a significantly lower level of activity than they were capable of prior to becoming ill. The illness results in a substantial reduction in occupational, personal, social or educational activities.”
Source - http://www.cdc.gov/cfs/cfssymptomsHCP.htm
Return to Doctor Agreed to sign off on forms
that I had CFS Didn’t believe it existed
However, CDC had just launched a campaign to make people aware of CFS.
PSA
Happy New Year! New Year’s Eve 2006
Went to sleep at 5 pmMissed the ball
Attempted to go back to work on Jan. 2nd
Went in two hours late Decided to use my
FMLA leave and recoup
Acupuncture
Began seeing an acupuncturist Best thing I did! She immediately said she could help
Opposite doctor I had been seeing
Began to make sense of thingsSomething in Lungs = Skin Problem that led
to the Prednisone that causes Adrenal Fatigue
WOW! Did I feel great!
Will Take Time
After the diagnosis, visited Psychiatrist – You’ll get well but it will take
timeSocial Worker – You’ll get better but it will
take timeAcupuncturist – We can get you better, but it
will take timeNew medical practitioner – It will take time,
but you will get there
Major Decision Because no one could tell me how much
time it would take, decisions needed to be made.
I wasn’t being paid under FMLA, just secured my job.
Rent was $800 +. No real support system outside of work. Or…go home and live off of mom and
dad.
Leaving it All Behind
On February 4, 2007, I resigned from my position.
Moved back home. Initially slept 20 hours a day. Eventually 15 hours around March. Then 10 hours in June. In January I found SL (Nadiya isn’t my
first avatar ;) )
Treatments Acupuncture Main CFS
MedicationsCymbaltaTopamaxProvigilLight BoxAmbien CR
Turmoil in December 2007 Brain fog rules my life, even today Paying bills was hard financially and
remembering where I put them and when they were due
Lost my health insuranceVisited the ERCouldn’t afford prescriptionsQuit taking all my prescriptions
Did get new insurance…but damage was done
Life Today
Still recoveringSome days are bad because I over-do itGetting sick knocks me back
See a Chiropractor that practices Applied KinesiologyTake a Multi-vitaminOther supplement varies from visit to visit
depending on what he finds
Work
Was following my goals and achieving them until I hit the brick wall (CFS)
Currently starting a business that will let me work at my own pace
Substitute Teach at local school district Part-time position as an International
Coordinator with Aspect Foundation Choir Director at local church
The Positives I slowed down a lot Learning to say “No” I stop and smell the
roses. Notice the little
things more.
Facts About CFS No test for CFS Disease of exclusion
You get tested and when everything is normal – you can be found to have CFS
Can look like other diseases – get tested for them all to be sure
No known cause No known cure Treatments will vary from person to person
Final Thoughts If you think there is something wrong, there
probably is. If one doctor cant help you, go to another
one. Try different treatments – there is no one
miracle pill or treatment – find the one or blend that works for you.
It’s possible to live with CFS, just do what you can, when you can.
Don’t over-do it!
CFS Resources
http://www.cdc.gov/cfs/ http://en.wikipedia.org/wiki/
Chronic_fatigue_syndrome http://www.cfids.org/ http://www.mayoclinic.com/health/
chronic-fatigue-syndrome/DS00395 http://www.cfs-news.org/