Part III: Almost Normal

Hello folks!

I'm so sorry about my long absence.  This time I've been away because I've been feeling good and have been out and about almost like a normal person.  I suppose you can say I've been making up for lost time.

I'm actually recovering from a nasty throat infection right now, but I'm otherwise doing well.

The biggest improvement has been with my energy.  After taking high doses* of CoQ10 (prescribed by my neurologist after a test confirmed I had low levels of it) for over a year, I have more energy than I've had in my entire adult life.  I don't make this statement lightly, and I'm definitely not saying that CoQ10 has "cured" me.  What it has done, however, is help improve the way my muscles make and process energy.

The improved energy allowed me to start exercising over the summer (with permission and specific guidelines from my doctors), something that would have been impossible just two years ago.  Unless I'm feeling ill, I exercise once a week for about 25 minutes with a trainer.  That's really my only formal exercise in a given week, but it's still 100% more than I used to do!

Before I agreed to work with my trainer, I interviewed him and made sure he understood where I was coming from physically.  Even though I looked young and healthy on the outside, I had the muscle atrophy of a 70 year old.  I also explained the instructions from my doctors.  No free weights because they're tough on the joints.  Bands are ok.  No heavy aerobic exercise because they could damage my muscles.  Low impact is fine.  He understood and really got it.

Around the time I started exercising, I started taking generic Plaquenil.  This medication is often prescribed for autoimmune diseases such as lupus and rheumatoid arthritis.  Though I can't tell for certain, I think this medication is helping me as well.  The joint pain in my hands seems to have decreased.

Fast forward to today.  I saw my neurologist this afternoon, and she confirmed my strength has increased.  This is the second visit in a row that she said my strength has increased, so I'm thrilled to know I'm on the right track.

We both think my improvement may be due to a combination of factors: the CoQ10, Plaquenil, and the strength building exercises I do with my trainer.  We also agreed that today would be my last visit with her as my neurologist because what I have is not neurological.  I will be continuing my followup with my rheumatologist and primary care physician.

That's all I have for now.  I've got to go to bed!


* Note added November 2, 2013:  I take 400mg of CoQ10 two times per day (total 800mg/day). 

Education is Key

When I first started getting sick in my early 20's, I disregarded the symptoms. I thought I was just feeling "under the weather," so I did what any normal, healthy twentysomething would do under those conditions...

I ate a healthy diet, took vitamins, and exercised.

The more I exercised, the worse I felt. Unfortunately, conventional wisdom told me to "push through" and eventually I should start feeling better. I kept pushing myself physically for about two years (ages 22-24) until I was too sick and too exhausted to work anymore. And then even when I was sicker and more exhausted, sleeping 16 to 20 hours a day (ages 24 and 25) and running low-grade fevers all the time, I continued to follow this "healthy" way of life during the few hours I was awake each day. (I should probably mention that the kind of exercise I did involved full-contact martial arts and working out at the gym.)

I did not understand that I was making myself worse.

It was finally after I got diagnosed that I stopped exercising almost entirely...not because I don't like to exercise (up until my illness I had been active all my life), but because my new doctor helped me come to the realization that my body could not keep up with my physical activity. I was, in fact, depleting what little energy my body could create. I miss exercising very much, but whenever I've tried anything (even light exercise), it has been too much for my body to handle. For now I have decided that going up and down the stairs at home and at work and getting through the day is exercise enough. Once I'm healthy again, I'll continue working toward my black belt.

Because of my own lack of awareness of CFIDS and because of the general lack of awareness in the medical community, I believe it took me longer to get diagnosed than it should have. I went from doctor to doctor telling them that "something" was wrong, but I that didn't know what. I told them all my symptoms (which, if you look at the blog post on my symptoms, should have at least pointed them in the direction of CFS after they ruled out other diseases) and gave them my complete medical history, including my family medical history.

One doctor told me that my problem was all allergies and pretty much dismissed me. (By the way, that doctor also worked for the NIH...) The next one told me that I looked healthy and that I was probably going out and partying too much. (Seriously? Last I checked, sleeping all the time was not a party.) Another doctor told me that CFS wasn't a real disease and tried to convince me that I was just depressed. (In a rare moment of rudeness, I asked him if depression caused fevers...because I was constantly running a low-grade fever. He didn't really have much of a response.) These doctor visits were not that long ago. In fact, all of them were between 2001 to 2005.

My story of going to multiple doctors is not unique. It is because of my own experiences and other patients' experiences that I have come to realize education is key.

Medical professionals and the public alike need to be educated about this disease. If CFS became a mainstream healthcare concern (Swine Flu, anyone?), then the general public and healthcare workers would be able to better understand the disease and the people who have it. Better yet, patients wouldn't go undiagnosed for as long. We would not have to feel afraid of being misunderstood. Doctors would stop treating us as if we were imagining things or psychologically disturbed. Schools, employers, and the government would take us more seriously and grant us the accommodations we need. More friends and family would better understand and support us.

Life would be so much better for so many people.

This is why I've decided to speak up more and share my story. I want to make a difference.