Finally...a Diagnosis

As most of you know, I have been sick on and off for the past year and a half, and I always thought it was mono.  Most of the symptoms I've had are very similar to mono, and the three different doctors that I went to said it was mono.  They also told me that there was nothing that I or they could do and that I just had to wait it out until it got better within a month or so.  After a year and a half, its still here.  I ended up having to quit work and most of my classes because I was so sick.  I finally started feeling better at the end of November, and I was so sure that it was going away. I continued to rest and eat as healthy as I could.  I then decided I was well enough to start exercising. Last week I did 30 minutes of relaxing yoga on Tuesday and Thursday. On Friday, my body just fell apart.  Every muscle in my body ached as if I had run a marathon, my lymph nodes everywhere in my body were swollen more than usual, and i was completely exhausted.  I just felt so sick!  I went to the doctor early this week to make sure that my spleen wasn't swollen since I had a lot of pain there, and she told me that mono wouldn't be flare as much as it was with just a little bit of exercise.  She did some tests and diagnosed me with Chronic Fatigue Syndrome.

I wanted a second opinion so I went to another doctor that I researched that has a lot of experience with chronic fatigue syndrome, and he agreed that's what it was.  For those of you who don't know what CFS is, I'm just going to copy and paste from The Centers for Disease Control and Prevention because I'm tired and my brain just doesn't want to work right now.

  "Chronic Fatigue Syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity.  Symptoms affect several body systems which can result in reduced participation in daily activities.

The fatigue of CFS is accompanied by characteristic illness symptoms lasting at least 6 months.  These symptoms include increased extreme exhaustion and sickness following physical activity or mental exertion, insomnia, fevers,  memory/concentration problems, brain fog, muscle and joint pain, swollen lymph nodes and spleen, sore throat, fainting, dizziness, weakness, allergies, sensitivities to odors, chills and night sweats, visual and aural disturbances, and depression or anxiety.

While symptoms vary from person to person in number, type, and severity, all CFS patients are limited in what they can do to some degree.  CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, and similar chronic conditions.

CFS often affects patients in cycles: patients will have periods of illness (can last for years) followed by periods of relative well-being.  For some patients, symptoms may diminish or even go into complete remission; however, they often recur at a later point in time.  This pattern of remission and relapse makes CFS especially hard for patients to manage.  Patients who are in remission may be tempted to overdo activities when they're feeling better, but this overexertion may actually contribute to a relapse.

The percentage of CFS patients who recover is unknown, but there is some evidence to indicate that patients benefit when accompanying conditions are identified and treated and when symptoms are managed.  High quality health care is important" (Centers for Disease Control and Prevention).

There's not much that can be done for treating it, but there are a few things that they can do.  The main treatments are controlling symptoms, followng a GEP (graded exercise program), sticking to a strict sleep schedule and diet, changing daily activities, and using cognitive behavioral therapy to learn how to live with the fatigue and other symptoms in everyday life.

I am doing alright, and I have lots of people that are eager to help in any way that they can.  My visiting teachers, home teachers, neighbors, friends, and family have all helped so much with anything that we need.  We have been very blessed, and we are so grateful to everyone for their prayers and help.  One thing I've learned is that I need someone to be accountable to with my treatment plans so that I will follow them well.  For this reason I will be posting my treatment plans on here.  I know especially when I'm so exhausted that I don't like worrying about exercising, eating, sleeping on schedule, and whatever else. Feel free to get on me if I'm not following them!

I mostly feel so relieved that we have a definitive diagnosis!  I was so confused why all of a sudden I was allergic to gluten, needed glasses, had hearing problems, became very anxious, and for the life of me could not make my mind focus on my classes.  It feels great to have a reason why all those things have happened.  Even though this is worse than mono, I'm glad I finally know what it is.

Also, I am continuing my education until I graduate.  I have a few online classes that are super easy and I can work on them when my mind decides to work, and other than that I only have 4 or 5 classes left until I graduate.  I plan on taking one class a semester so I don't overdo anything.  I may graduate a few years late, but I will graduate!

I'm also starting this blog to keep myself busy so I don't keep watching Netflix all day.  After watching it every day for a year and a half its extremely boring.  Pretty sure I have every episode of the office completely memorized.  Test me, I dare you :)