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Chronic Fatigue Syndrome
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Posted 11/25/2013 4:02 PM (GMT -7)
Hello all,

I am a music teacher at a small school in the Midwest. I'm 24 and I teach grades 4-12. My subjects include recorders, elementary band, middle school band, high school band, marching band, pep band, middle school general music, and many other daily tasks. Last year, at the end of October, I contracted a terrible virus that closed my throat and demanded a lot of sleep. At the time, I was in extremely great health, and had planned to never use a sick day at school. That goal was immediately crushed when my illness got much worse and I was forced to enact Long-Term Disability, missing months of school. The doctors were highly unsympathetic. After seeing a handful of different doctors and getting tons of bloodwork and tests done, I only received responses such as "it's all in your head" to "you are only tired because you are suffering from depression--both being the farthest from the truth.

By April, I forced myself to teach the final few months of the year. I was still suffering from debilitating fatigue, but the fact that no doctor believed me left me no choice but to push through it. My teaching greatly suffered from it. I feel as though the students are missing out on such a wonderful experience from my utter lack of energy. Over the summer, I moved in with my father and did nothing for three months, my only goal in mind being well enough to teach again in the fall. I never felt like my healthy self, but I did seem to improve a bit.

This Fall, I was determined to make up for the terrible year previous. I started off fairly strong in September. In the middle of October, my symptoms rushed back to me, even stronger than they were before. Extreme, crushing fatigue, muscle weakness and soreness, fevers, sore/hoarse throat, giant gaps in memory and focus (all impossible to teach with) After another infuriating visit to a doctor telling me it was depression, I had no idea what to do next. Finally, some co-workers suggested (maybe demanded) that I take my case to the experts at Mayo Clinic. That had never occurred to me, but I was desperate for any help that anyone could give me.

Mayo was the best decision I've ever made. The people were so kind and helpful. After the initial exam with my doctor, he strongly believed that what I was going through looked exactly like Chronic Fatigue Syndrome. Many, many test later (blood, sleep, etc) he confirmed his belief, giving me the official diagnosis of CFS--Something I had never even heard of, to be honest--and told me the first steps to recovery were getting on a graduated exercise program, and attending cognitive therapy.

It has only been a week since my diagnosis, but I have been taking everything I learned with my physical therapist very seriously. I have been doing the excesses they prescribed. I know it is a long journey to recovery, but I feel so much better just figuring out that it is NOT all in my head. (Not physically, of course, but mentally.) I haven't returned to work yet. I'm a little concerned right now that the doctors did not give me a suggestion on how much time to take off, if any. When I asked about it, he only said, "Since I am not in your body, I can't tell you what your body feels like and needs." I found many sufferers of CFS online saying, "take the time off immediately. Health first, job second."

At this point, I am suffering so much that I can't even see going back part-time. I can barely get myself out of bed. I try not to sleep all day, but sometimes I have no choice. My body just shuts down. My school is very supportive, letting me decide what I need to do next. The problem with that is that I am an extremely stubborn workaholic that hates missing any work at all. I know that I am not well enough, and I am afraid that the answer may be to let someone else take over for the rest of the year. (That idea kills me to even think about.)

I guess I'm here because I'm desperate for someone to talk to about what I am going through. I have found several articles online about CFS and teachers like me that had no choice but a change in career. If you or anyone you know have been in a similar situation, I would love to hear from you. Any teachers that have CFS?

Sorry for the long entry. I really just needed to get all of that out to someone who could actually understand what I am going through.

kbarry
Posted 11/26/2013 11:07 AM (GMT -7)
hiya - i find it all very confusing myself...Ive just found out I have adrenal fatigue and aleady have fibromyalgia, not officially diagnosed with CFS yet, but I get the crushing fatigue...Like today. I still work, somehow, 4 days a week and have two little ones to look after also...slowly its taking its toll on me, there will be a time when I need to give up and just raise my children.

Im on a host of meds and supplments and have had this 11 months now, its fluctuated, I have been well for a couple of months and as soon as I went back to work after sick leave I went downhill again. One day I feel not too bad another like death, its very topsy turvy...Im finding that adrenal fatigue is a lot to do with it, if you havent already been tested for this, get them to test your hormone levels.

I am interested to know, did the mayo clinic suggest Graded exercise? I never felt better after the summer when i was able to walk a bit more.

Im here to talk, i may not have exactly as you but I do know about chronic mysterious illness Hopefully you will get some more answers soon

xxx

Im in UK so don't know what the mayo clinic is.
Posted 12/1/2013 3:33 PM (GMT -7)
KBarry,

I feel your pain.  I am also a music teacher (general music, K-8) and an organist and director of multiple choirs at our church (amongst other part-time pursuits).  I came here seeking advice as well.  I love music, but at this point, I'm too drained to really be effective in the classroom, choir loft, or at the keyboard and computer composing.  I'm very afraid of losing the jobs I have if I take much time off - so I drag myself out of bed and do what I have to do.

I'm only starting on the path of diagnosis with my PCP.  But I already know that I will be eliminating some of my jobs, especially those that pay poorly, beginning January 1.  That's if I can even make it through the Christmas season... as the saying goes, "the show must go on."  I think I will be able to manage working 15-20 hours a week in small increments (3-4 hours at a time), but no more 8-10 hour days for me until I figure out what's going on with my health.  Since I'm a contract employee at my jobs, there is no paid time off.  I'm essentially self-employed. 

Keep us updated.

Southern Harmony

 

Post Edited (southernharmony) : 12/1/2013 3:39:26 PM (GMT-7)

Posted 1/8/2014 12:46 PM (GMT -7)
Hi kbarry,

I just came across your post and first of all, I'm so sorry that you are having to deal with this illness. I would not wish it on anyone. How have you been doing since your last post?

I felt compelled to respond since your experience has been so similar to mine. I was a fifth grade teacher, got a virus (when I was about your age), fought through it and continued to teach (Like many of us, I was raised to just "push through" when things get tough). However, a couple months into my second year of teaching, I had pushed too long and too hard and my body just broke down and I had to quit. It was very difficult.

I got the same responses from many doctors (it's all in your head, you are just depressed, etc) before getting diagnosed with CFS. That was many years ago. Since then, I remain fairly bed-ridden and sick. I don't tell you this to discourage you but, instead, I want to share with you what I have learned and what I wish someone had told me years ago when I first became ill.

The good news is that you are still early into the illness and your chances, statistically, of getting better/learning to cope, are much better than someone like me, who has had the illness for a long time.

The first thing that I wish someone would have told me was that exercise is a doubled-edged sword. Unless your physical therapist specializes in CFS, many of the strategies he/she uses may not work for you (if they do, that is great!). I was very physically active in sports before getting ill. And again, in sports, you are supposed to push through the pain and tiredness in order to get stronger. However with CFS, it is the opposite. You need to learn how much exercise you can do and start really slow (I started at 10 seconds a day), even if it seems absurd to do so little. It is better to start up slow and inch your way up then to continually overshoot and do too much. If you do too much, you will crash (and then recover and do too much and crash again, etc) You have to be the one to figure out how much you can do, not anyone else. It will fly in the face of conventional wisdom about exercising. The goal is not to keep pushing yourself to do more. It is to find the amount and type of exercise that will allow you to exercise without crashing. You have probably heard of "Post Exertional Malaise" by now. If not, please look it up as it is one of the defining symptoms of CFS.

Another thing I wish I would have done was to just stop everything (if it were possible) and take care of my body. This is so hard for a workaholic (add an A-type personality, perfectionist in my case). CFS is all about learning to pace yourself and avoiding crashes as much as possible. Your body needs you to listen to it, not to social conventions. This is so much easier said than done. If I could do it again, I would have given myself a good amount of time off from everything. We tend to do as much as we can but with CFS, that is often too much and results in a crash cycle (or a long term crash). If I could go back in time, I would take a year off of everything, build/keep a small but close network of friends/family around me, explained to them what CFS is and what my limitations are and what I needed to do. It seems counterintuitive but I would allow myself to be sick without the constant pressure to do more or get better. I would be gentle with myself and learn what I could about CFS and slowly and gently incorporate things into my life that help me rest, pace myself, and hopefully, eventually either recover or get to a place when I can function within the illness.

I didn't do this and kept frantically pressuring myself to figure out how to do more or get well. And maybe this would not have helped me, but I feel like it would have given my body a better chance at healing if I had not done these things. As it is, I continued to do as much as possible and spent years in the push and crash cycle until my body was unable to recover. Now I concentrate on management--doing what I can to get a good sleep, to get enough rest, to cope with pain and to do what I can. I have been forced to stop almost everything. If I had just done this from the beginning, I wonder how my prognosis would be different now.

One more thing. Cognitive behavioural Therapy is a great way to learn to help cope with the illness (especially if your therapist is familiar with CFS) but it is not a cure (this is in my opinion and based on my experience and what I have read). It can help you deal with an illness that can cause many losses in your life and that is very isolating. I think that it helps people with CFS more than others because CFS has some unique aspects to it (including social stigma) but CBT is just a way to help cope--it would help people with other illness cope also. It is not exclusive to CFS. I mention this because doctors sometimes look at the research summaries and assume CBT is an answer to CFS and it is not.

Wow, this all sounds depressing! But it isn't! You are still so early into the illness and there is so much more info and support available now. And as for me, I don't give up hoping! There is so much research being done to figure out CFS. I have found a way to enjoy life and enjoy my family despite the limitations that CFS has on me. And I'm hoping that my experience can help someone avoid some of the pitfalls that I fell into. I wish you all the best!
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