Chronic Fatigue Syndrome

This page has information about my own personal experience with CFS and links to both CFS information and IRC friends with CFS.

Late in the summer of 1993, I was seeing the finishing times increase in triathlons and road races that I was competing in. I trained harder and got slower! By the time early fall arrived, my times had slowed considerably and I noticed that even my “easy” training rides and runs were getting harder to do at my normal pace. I decided to quit biking and swimming and just concentrate on running. I thought I was decreasing my training load but as I reflect back, I know that I really put in almost the same amount of time because I upped my mileage to be able to complete an “easy” Chicago Marathon! I knew I was in trouble 1/2 way through the race and struggled to complete it even though I had put in the miles that should have allowed me to cruise in without too much effort.

I realized something was wrong, probably over trained and stale needing some time off. I caught a cold/flu about 2 weeks after the marathon which is not uncommon. I decided to take a month off. After 30+ days of rest I started easy running again but found the normal slow “easy” runs more difficult and slower than I had ever experienced. I decided to rest some more…another month or so until nearly Christmas. I started running again during the holidays (a lot of the details and timing are a little fuzzy now) but I remember just not feeling right.

I decided to see my personal doctor (an internist) at this time. I told him I was tired all the time and my racing/training times had slowed considerably and my overall mileage was way down. Of course his answer was that I was still able to do much more than most people and shouldn’t worry about it. I asked him if we should or could test for any illness and his response was “I suppose we could”. My whole experience from this point on got very frustrating because I had to ask for each and every step to be taken. I had to do all of the research. I hit the ‘net trying to get as much data as I could about this thing called “Epstein-Barr” that I had read about. I reaped a harvest of information from email listserves to Usenet newsgroups. Posting in the running and triathlon newsgroups about “Epstein-Barr” brought a lot of information to me about that and also a thing called “Chronic Fatigue Syndrome”.

From that point on I kept my M.D. up to date on all the latest facts and theories about the disease from other athletes, NIH ( The National Institute of Health), newsgroups, email lists and Johns Hopkins. These included complete Epstein-Barr virus blood tests (which did show reactivated virus’), all of the Iron tests possible, thyroid and parathyroid tests, stress tests and EKG’s to rule out cardiopulmonary problems and probably more that I can’t remember now. I tried vitamins and food grade hydrogen peroxide with no noticeable results.

Six to nine months had elapsed by now and they had been filled with many starts and stops to weekly training. Trying to ride with my old training partners now was putting me on the couch for days. Sleep was fitful. I had had some kind of cold or sinus infection in mid-late winter that would last two weeks, go away, return for two weeks, go away and then returned for a final two weeks. I had several occurrences of a virus cold sore that year on or around my lips. In the past these would occur once a year or less. During 1994 I had 3 or 4 occurrences. My weight was gradually going up and by energy was gradually going down!

Near the end of the summer of ’94 I read about Alberto Salazar’s (famous US Olympic marathoner plagued with the same illness) amazing comeback using Prozac. I raced to my M.D.’s office with the good news at which time he told me he knew of some successes using the drug and prescribed accordingly. I took the drug for 8 weeks with no improvement so I stopped taking it and changed M.D.’s.

I continued to try to run when I could, it seemed like I was forever trying to start over. My weight was still creeping up and I wasn’t getting any better. Listening by my new M.D. (a jogger) seemed a little more attentive but I was still educating him on the world of CFS. Mailing, calling and faxing each time I had what I thought was a piece of new information. Letters from American Running and Fitness Association staff M.D.’s around the states, suggestions from an M.D. that cared for the Olympic cycling team, the article on Greg LeMond’s diagnosis at the Mayo Clinic. He tried a different anti-depressant (Zoloft) for 8 weeks but this had no effect. An Echocardiogram was a few months later followed by a blood-oxygen exchange test on the bike months after that.

By now I had fought and clawed my way through most of ’95 with no success. Now it was beginning to be a test of wits. Did I have CFS or was I just dreaming? Had I been detraining long enough that short easy runs were just plain HARD now or was it still the disease? Was it live or was it Memorex? My sleep was always poor when I was tired. My moods were pretty poor and and I was really wearing on the family. Through the winter of ’96 nothing much really took place. I had stopped most of my research and quit going to the M.D. I just kept trying to run a few miles when I could.

In may of ’96 I talked to a local road racer, who had recovered from CFS the prior year, at The Quad Cities Distance Classic, the areas premier 1/2 Marathon hosted by the Cornbelt Running Club. His story sounded like a Xerox of mine! He had finally changed his diet the prior year to mostly fruit and veggies along with a little chicken and fish. He said he never felt stronger! I see his name in the newspaper race results today (1997) so I guess he’s still well. So, right away I changed my diet. I ate all fruit and vegetables with occasional fish or chicken. I did start to feel better. I was able to start and maintain an ever increasing training regimen escalating to late summer efforts of 25 miles per week running along with 100 plus miles per week on the bike. I was able to train with my old biking colleagues on the flats but I lost them on the hills because I was still carrying too much weight. I was losing some of the weight I had gained but I still had a long way to go. I had gone from 180 in the fall of ’93 to 230 in the spring of ’96. By the summer’s end I had come back to about 210-215. In September of ’96 I rode in a Century ride (100 miles) at a pretty tough pace. I felt extremely tired after the event but who wouldn’t and after all I had been bouncing back all summer. In the next weeks I was feeling pretty good again so I went to the pool and swam 30 minutes two different nights and a few days later I crashed!!!

I’ve really been depressed since then (October ’96) until recently (February of ’97). I have run a total of 3 miles in 2 months of1997, hardly an athlete’s schedule! At the end of February I decided I need to do something for my depression alone now. I was really down. I decided to try to get active with the disease again by getting to the Internet to find out what was new. I called my M.D. to discuss a referral to a major research hospital like Mayo Clinic or The University of Iowa Hospitals. I also asked for an opinion regarding counseling. He encouraged me to see a Psychologist. The local HMO suggested a psychiatrist because of the M.D. requirement for referrals to other institutions so I decided to see the Psychiatrist. I took a depression screening test and passed (I was indeed depressed). She prescribed Wellbutrin which I have been taking for 3 weeks now and I really do feel much better with no side effects! I had discovered more information on the Web than had been available a year and 1/2 prior so I researched with enthusiasm! I discovered the CFS channel on IRC. What a great discovery that was! Many friends to talk to about a common illness, immediate gratification in knowing you are not alone! These friends are listed on another page that you could access from the list at the top of this page. It was from these folks that I found out about Michelle Akers, an Olympic soccer player with CFS. I read all of the information at her site and learned of her improved health by following an “Elimination Diet” prescribed for her by Dr. Cheney (a noted CFS M.D. in NC). I started the diet right away, about the same time I started the Wellbutrin. So at this point, March of 1997, I’m feeling much better, starting to run on alternate days and more positively spirited. I’m talking with the Psychologist that my M.D. recommended just to help with adjusting life styles and coping mechanisms. I’m still pursuing the advanced medical referral which has required me to see a Rheumatologist before a referral can be given.

May 30,1997 – I still have not had a down day since March 3,1997. I still take Wellbutrin. I completed the 10 week Elimination Diet and then slowly reintroduced the eliminated foods and have no bad effects. I am still taking vitamin supplements too. My training continues to be difficult due to my weight but I’m hoping that when the heat of summer arrives (soon I hope :)) it will melt off. I’m up to running about 5 miles 5 days per week. I have decided against adding any bike and/or swim training this year. If I can stay healthy for 1997 I’ll add the other sports in the winter of 1998.

January 6, 1998 – Well, the saga continues.  The heat of summer training (avg. 25 miles per week running) saw NO weight loss!!!  What a shock.  I did no swimming or biking, just ran (slowly – 10min per mile) and my weight moved upward to 245….incredible!!!!  Late in September I had a bout with CFS (or a visit from an alien) and had to back off significantly.  Several ups and downs during the fall.  I discontinued the Wellbutrin.  In December I have had a cold, the flu and two cold sores!!!!!!   What a month.  I intend to try the Zone Diet for a while and try to get my running mileage back up to and even over 40 miles per week by the end of February.   Happy New year all!!!!

June 24, 1998 – I’m not updating this as often as I’d like to, but better late than never I guess!  I’m still on kind of a see-saw ride still.  I have had good days, weeks, etc…..and bad ones as well.  I have not been past 20 miles in a week since my last update in January.   I haven’t gone farther than 6 miles since then either and as a matter of fact, the last 4 weeks have brought a total of about 18 miles!!!  I bought some new biking equipment, but I’ve only ridden 3 or 4 times this spring/summer so far.  Our local Bix7 mile road race is the last Saturday in July…..I’m concerned about whether I can get through it or not!  My weight is up a few pounds over last summer so things are just getting steadily worse.  I hope it ends soon!!!  More later.

Well, let me try to catch up here…..I really have neglected this page! Sorry.  Since 6/98 I have gotten through our Bix7 mile road race…slow but feeling good and decided to continue to increase my mileage until the middle of September and then taper back so I could try to jog through our brand new, 1st year, Quad Cities Marathon.  Well, as my luck seems to run it was like July heat on a September day so I was only able to complete 17 miles before I crashed and burned but I still felt good to running those kind of miles.  I kept my mileage up through January of ’99 thinking I would try another marathon in the spring just to have a goal to aim at.   February and March were disasters though.  Endless fatigue, colds, flu, fitful sleepless nights and a regain of all the weight I had lost in the last 6 months.

I kept plugging away at life, work, and studies (finishing a degree in the summer of ’99).  Got going with erratic running and a bit of easy biking in the spring and summer of ’99.  I was really loaded down with stressful coursework finishing the degree so I just focused on that, which I did complete at the end of July ’99.  Since then I have tried to relax, and restart my training by doing 4 easy runs per week, biking on non-running days, and even doing some stroke drills in the pool.  Sure enough, 3 weeks after I started this, I had my 1st sore throat and cold of the summer and 3 weeks after the sore throat went away  (2 weeks going) I am still suffering a dry cough to this day! (September, 16th, 1999).

11/14/2000 – Man how time slips away! (Thanks Willie Nelson).  It’s been over a year since I’ve been her long enough to write any updates.  I apologize to all who expected, wanted, or needed more frequent and/or current information.  The past year has been much more of the same. i.e. a continuous slide to the negative side of this whole thing and combined with getting older (51 in a week) the ongoing mystery of not knowing what is causing the fatigue, weight gain, lack of concentration, frequent illnesses, and poorer memory just keeps me really depressed!  Local MD still tells me, sympathetically, that he really has no new news.  I do get email from others around the globe (I wish I was good enough to mention them all here because they really do bring light to my days!) and I can’t tell you what that means to me.  It helps when you realize you are not going through this all alone.  I recently heard from an MD who was a  “world class” marathoner and (small world isn’t it) had competed in the Bix7 race I mentioned earlier.  Another national age group triathlete wrote to me just the other day to tell me he was visiting a “naturopathic doctor” (sp) and was trying antidepressants to try to deal with this ugly condition.  He had asked for information about the “Elimination Diet” mentioned above because my link was broken.  (I fixed it with this recent update).  

11/17/2000 – Note:  University of Washington Study is looking for twins with the disease. 

12/31/2003 – It’s probably obvious I have been away from this page for sometime and I consider this my last post.  I will leave the page up for reference but will not update any further.

Good health and good luck! 🙂