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Living With Chronic Fatigue Syndrome


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Presentation on CFS done for the 2008 Dreams Carnival in Second Life.

Published in: Health & Medicine
  • Hi Jennifer,
    very interesting, thanks for openly publishing your story.
    I have had ME-CFIDS-CFS for 10 years now.

    See my treamtent results here:

    Have you looked into the ''Gupta program? (search for it on the net)
    Are you sure you want to  Yes  No
    Your message goes here

Living With Chronic Fatigue Syndrome

  1. 1. Presenter: Nadiya Destiny Group: Agape Learning
  2. 2. My Story <ul><li>Tired all the time </li></ul><ul><li>Diagnosis </li></ul><ul><li>Treatments </li></ul><ul><li>Facts About CFS </li></ul><ul><li>Question and Answers </li></ul>
  3. 3. Who I Am <ul><li>Jennifer Kraft </li></ul><ul><li>29 years old </li></ul><ul><li>Former special educator </li></ul><ul><li>Former Education Technology Facilitator </li></ul><ul><li>Business Owner </li></ul><ul><li>CFS Sufferer </li></ul>
  4. 4. Beginnings of My Disease <ul><li>Not sure when it started </li></ul><ul><li>Signs point to massive dosages of Prednisone </li></ul><ul><ul><li>At one point, between 6 and 9 Hydrocortizone shots in one year </li></ul></ul><ul><ul><li>Consistently off and on Prednisone, then on highest dosage for 6 – 9 months </li></ul></ul><ul><ul><li>Put on 90 pounds of stubborn weight </li></ul></ul>
  5. 5. Life Pre-CFS <ul><li>During the three years post-college graduation, I </li></ul><ul><ul><li>Was involved with three church choirs </li></ul></ul><ul><ul><li>Worked with the youth at my church </li></ul></ul><ul><ul><li>Held a second job </li></ul></ul><ul><ul><li>Took classes to get my Master’s Degree </li></ul></ul><ul><ul><li>Participated in several community service projects </li></ul></ul>
  6. 6. Slow Down <ul><li>Eventually, I </li></ul><ul><ul><li>Quit my second job – blamed it on classes and church </li></ul></ul><ul><ul><li>Quit the bell choir – blamed it on classes </li></ul></ul><ul><ul><li>Started arriving later and later too work </li></ul></ul><ul><ul><ul><li>Was disciplined for it </li></ul></ul></ul><ul><ul><li>Started arriving late for all my activities </li></ul></ul><ul><ul><li>Slept as soon as I got home until I had to leave again – blamed teaching pre-k </li></ul></ul>
  7. 7. New Job – Starting Fresh <ul><li>I blamed a poor work environment and burn-out and got a new job. </li></ul><ul><li>Completed my Master’s Program </li></ul><ul><li>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! </li></ul>
  8. 8. Started Out Well <ul><li>Good for the first year </li></ul><ul><li>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. </li></ul>
  9. 9. Youth Gathering <ul><li>Attended ELCA Youth Gathering in Texas July 2006 </li></ul><ul><ul><li>Slept A LOT </li></ul></ul><ul><ul><ul><li>Blamed the heat </li></ul></ul></ul><ul><ul><ul><li>Blamed the volunteer positions I had </li></ul></ul></ul><ul><ul><ul><ul><li>Help line 4-12 midnight first week </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Bus Greeter 5 – 10 am second week </li></ul></ul></ul></ul><ul><li>It was all downhill after this event. </li></ul>
  10. 10. Occupational Therapy Conference <ul><li>At the end of September 2006 </li></ul><ul><li>Traveled to Kentucky for a weekend </li></ul><ul><li>I missed my first flight </li></ul><ul><li>My co-presenter was sick and we shared a room </li></ul><ul><li>When I returned I was sick </li></ul>
  11. 11. Coaching Volleyball <ul><li>Coached volleyball at my school </li></ul><ul><li>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 </li></ul>
  12. 12. Final Straws <ul><li>Trip to the Credit Union </li></ul><ul><ul><li>Campus of Johns Hopkins University </li></ul></ul><ul><ul><li>Steps+ Warm Day+ Half-way Across campus = Inability to wake up next morning until 1 pm </li></ul></ul><ul><li>Approached by boss </li></ul><ul><ul><li>My concerned boss brought me in because she was concerned </li></ul></ul><ul><ul><ul><li>Wasn’t arriving on time </li></ul></ul></ul><ul><ul><ul><li>Work was slipping </li></ul></ul></ul>
  13. 13. Doctor Appointments <ul><li>Psychiatrist </li></ul><ul><ul><li>You are doing well…nothing mentally wrong </li></ul></ul><ul><li>Social Worker </li></ul><ul><ul><li>You are doing well…nothing mentally wrong </li></ul></ul><ul><li>Doctor </li></ul><ul><ul><li>Poked and prodded for everything </li></ul></ul><ul><ul><li>2 nd Sleep Test – turned out better than the 1 st </li></ul></ul><ul><ul><li>Blamed my weight </li></ul></ul>
  14. 14. Golden Girls <ul><li>Diagnosis came when watching a Golden Girls episode </li></ul><ul><li>Dorothy is “Sick and Tired” and visits all sorts of doctor’s </li></ul><ul><li>Was told she was crazy </li></ul><ul><li>Then finally given the CFS diagnosis </li></ul><ul><li>Had seen it a number of times and disregarded </li></ul><ul><li>One time while home sick watched it and it sunk in </li></ul>
  15. 15. Golden Girls Episode Synopses <ul><li>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. </li></ul>
  16. 16. This is Me! <ul><li>Researched CFS on the Internet </li></ul><ul><li>Read numerous sites </li></ul><ul><li>Discovered that the list of symptoms matched me </li></ul><ul><li>Relieved and scared </li></ul>
  17. 17. 8 Primary Symptoms of CFS <ul><li>cognitive dysfunction, including impaired memory or concentration </li></ul><ul><li>postexertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercise </li></ul><ul><li>unrefreshing sleep </li></ul><ul><li>joint pain (without redness or swelling) </li></ul><ul><li>persistent muscle pain </li></ul><ul><li>headaches of a new type or severity </li></ul><ul><li>tender cervical or axillary lymph nodes </li></ul><ul><li>sore throat </li></ul><ul><li>Source - </li></ul>
  18. 18. More Symptoms of CFS <ul><li>irritable bowel, abdominal pain, nausea, diarrhea or bloating </li></ul><ul><li>chills and night sweats </li></ul><ul><li>brain fog </li></ul><ul><li>chest pain </li></ul><ul><li>shortness of breath </li></ul><ul><li>chronic cough </li></ul><ul><li>visual disturbances (blurring, sensitivity to light, eye pain or dry eyes) </li></ul><ul><li>allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise </li></ul><ul><li>difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting) </li></ul><ul><li>psychological problems (depression, irritability, mood swings, anxiety, panic attacks) </li></ul><ul><li>jaw pain </li></ul><ul><li>weight loss or gain </li></ul><ul><li>Source - </li></ul>
  19. 19. Strong Statements About CFS <ul><li>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.” </li></ul><ul><li>“ 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.” </li></ul><ul><li>Source - </li></ul>
  20. 20. Return to Doctor <ul><li>Agreed to sign off on forms that I had CFS </li></ul><ul><li>Didn’t believe it existed </li></ul><ul><ul><li>However, CDC had just launched a campaign to make people aware of CFS. </li></ul></ul><ul><li>PSA </li></ul>
  21. 21. Happy New Year! <ul><li>New Year’s Eve 2006 </li></ul><ul><ul><li>Went to sleep at 5 pm </li></ul></ul><ul><ul><li>Missed the ball </li></ul></ul><ul><li>Attempted to go back to work on Jan. 2 nd </li></ul><ul><li>Went in two hours late </li></ul><ul><li>Decided to use my FMLA leave and recoup </li></ul>
  22. 22. Acupuncture <ul><li>Began seeing an acupuncturist </li></ul><ul><li>Best thing I did! </li></ul><ul><li>She immediately said she could help </li></ul><ul><ul><li>Opposite doctor I had been seeing </li></ul></ul><ul><li>Began to make sense of things </li></ul><ul><ul><li>Something in Lungs = Skin Problem that led to the Prednisone that causes Adrenal Fatigue </li></ul></ul><ul><li>WOW! Did I feel great! </li></ul>
  23. 23. Will Take Time <ul><li>After the diagnosis, visited </li></ul><ul><ul><li>Psychiatrist – You’ll get well but it will take time </li></ul></ul><ul><ul><li>Social Worker – You’ll get better but it will take time </li></ul></ul><ul><ul><li>Acupuncturist – We can get you better, but it will take time </li></ul></ul><ul><ul><li>New medical practitioner – It will take time , but you will get there </li></ul></ul>
  24. 24. Major Decision <ul><li>Because no one could tell me how much time it would take, decisions needed to be made. </li></ul><ul><li>I wasn’t being paid under FMLA, just secured my job. </li></ul><ul><li>Rent was $800 +. </li></ul><ul><li>No real support system outside of work. </li></ul><ul><li>Or…go home and live off of mom and dad. </li></ul>
  25. 25. Leaving it All Behind <ul><li>On February 4, 2007, I resigned from my position. </li></ul><ul><li>Moved back home. </li></ul><ul><li>Initially slept 20 hours a day. </li></ul><ul><li>Eventually 15 hours around March. </li></ul><ul><li>Then 10 hours in June. </li></ul><ul><li>In January I found SL (Nadiya isn’t my first avatar ;) ) </li></ul>
  26. 26. Treatments <ul><li>Acupuncture </li></ul><ul><li>Main CFS Medications </li></ul><ul><ul><li>Cymbalta </li></ul></ul><ul><ul><li>Topamax </li></ul></ul><ul><ul><li>Provigil </li></ul></ul><ul><ul><li>Light Box </li></ul></ul><ul><ul><li>Ambien CR </li></ul></ul>
  27. 27. Turmoil in December 2007 <ul><li>Brain fog rules my life, even today </li></ul><ul><li>Paying bills was hard financially and remembering where I put them and when they were due </li></ul><ul><li>Lost my health insurance </li></ul><ul><ul><li>Visited the ER </li></ul></ul><ul><ul><li>Couldn’t afford prescriptions </li></ul></ul><ul><ul><li>Quit taking all my prescriptions </li></ul></ul><ul><li>Did get new insurance…but damage was done </li></ul>
  28. 28. Life Today <ul><li>Still recovering </li></ul><ul><ul><li>Some days are bad because I over-do it </li></ul></ul><ul><ul><li>Getting sick knocks me back </li></ul></ul><ul><li>See a Chiropractor that practices Applied Kinesiology </li></ul><ul><ul><li>Take a Multi-vitamin </li></ul></ul><ul><ul><li>Other supplement varies from visit to visit depending on what he finds </li></ul></ul>
  29. 29. Work <ul><li>Was following my goals and achieving them until I hit the brick wall (CFS) </li></ul><ul><li>Currently starting a business that will let me work at my own pace </li></ul><ul><li>Substitute Teach at local school district </li></ul><ul><li>Part-time position as an International Coordinator with Aspect Foundation </li></ul><ul><li>Choir Director at local church </li></ul>
  30. 30. The Positives <ul><li>I slowed down a lot </li></ul><ul><li>Learning to say “No” </li></ul><ul><li>I stop and smell the roses. </li></ul><ul><li>Notice the little things more. </li></ul>
  31. 31. Facts About CFS <ul><li>No test for CFS </li></ul><ul><li>Disease of exclusion </li></ul><ul><ul><li>You get tested and when everything is normal – you can be found to have CFS </li></ul></ul><ul><li>Can look like other diseases – get tested for them all to be sure </li></ul><ul><li>No known cause </li></ul><ul><li>No known cure </li></ul><ul><li>Treatments will vary from person to person </li></ul>
  32. 32. Final Thoughts <ul><li>If you think there is something wrong, there probably is. </li></ul><ul><li>If one doctor cant help you, go to another one. </li></ul><ul><li>Try different treatments – there is no one miracle pill or treatment – find the one or blend that works for you. </li></ul><ul><li>It’s possible to live with CFS, just do what you can, when you can. </li></ul><ul><li>Don’t over-do it! </li></ul>
  33. 34. CFS Resources <ul><li> </li></ul><ul><li> </li></ul><ul><li> </li></ul><ul><li> </li></ul><ul><li> </li></ul>