Chronic Fatigue Syndrome, Narcolepsy, Restless Legs Syndrome

I am interested in beginning a support group for Chronic Fatigue sufferors. I would love for anyone to offer words of encouragement if they also experience this horrible illness. Please only offer honest and factual feedback related to your fatigue experience. Those of us who are plagued with extreme fatigue don't have the time and energy to spend all day online. I'm neglecting home chores and valuable sleep in order to begin this. I appreciate your understanding.

Alittle about me to begin this.

I began with fatigue problems in high school My restless legs also began then. I correctly self-diagnosed my RLS (Restless Legs Syndrome) in early college years. My fatigue continued to increase. I was highly motivated and always extremely energetic. But when I slowed down, I crashed and had a hard time getting myself going again. Naps were evil traps to suck out all of the rest of my energy. I laughed when people told me that they felt "refreshed" after a 10 minute nap. What is "refreshed?" I began to doubt myself and wondered if I was "lazy." But I refused to believe it. I was so busy, so anxious to do things or get things done. I just had a really hard time getting myself up out of bed.

In January 2001, I couldn't take it anymore.

I was and still am a physically fit, 5'4", 120 lb, extremely active mother of two and stay at home mother. I work out 3 times a week to Advanced TaeBo. I play 4 on 4 volleyball for 2 hours once a week. I am a highly intellectual person. I was paid by the university to teach undergraduate statistics during my senior undergraduate year. I was offered a teaching position in the mathematics department when I graduated. I obtained a Psychology degree with my focus and passion on child and primate cognitive development.

I was smart enough to know that my fatigue wasn't stress related, physically unfit related, laziness related, overwhelmed related, or anything else that couldn't be ruled out. I had to pursue my family physician for 9 months (test after test coming up negative) about what the problem could be. Finally, a friend of mine asked me, "If you are getting all this sleep and still not 'getting enough to feel rested,' are you getting the 'kind' of sleep you need?" What a great idea! I took it to my family doctor. He sent me to a neurologist. Lo and behold, a new relationship began!

My neurologist asked me questions that got me excited!!! Do you have creepy crawly feelings in your legs? Yes. Do you have overwhelming desires to take naps during the day? Yes! Do you fall asleep at the car's driving wheel while waiting for the signal light to turn green? Yes! Do you feel groggy when you wake up in the morning after 8 hours of rest? Yes! Do you fall asleep while you are talking with company at your home? Yes!! Do you uncontrollably fall asleep in embarrassing public situations? YES!!! Do one or both of your parents battle with fatigue problems? YES!!! Do you wake up from naps: confused? unable to walk or talk correctly? slightly paralyzed (trip when walking or slurred speech when talking)? YES, YES, YES!!!! I knew that I finally was were I needed to be. I wasn't crazy anymore. I didn't care if he told me that I had cancer and needed surgery and radiation. I didn't care if he told me that I had an inoperable brain tumor and would die in 3 months. I didn't care! I knew that I wasn't crazy!! SOMETHING was WRONG!

So, the first sleep lab study, 2001, showed the most extreme case of untreated Restless legs that he had ever seen. I had an average of 274 leg movements each hour. I had about an hour of total REM sleep in the 9 and 1/2 hours of sleep that night. I began taking Mirapex. It was perfect for the first 3 months. I woke up "refreshed" after 8 hours of sleep! I finally knew what "refreshed" meant!! It was wonderful. Some mornings, I actually "tried" to fall back asleep. I couldn't!! It was GREAT!! Then I began to crash slowly over the next 9 months. My doctor kept upping the dosage. Finally, he suspected another underlying condition. I had another sleep lab study, 2002, and it clearly pointed in the direction of narcolepsy or Chronic Fatigue Syndrome (CFS). I slept perfectly all night (9 1/2 hours of sleep). Then I had 5 nap studies done the next morning and afternoon. I had an average of 3 1/2 minutes to REM stage sleep.

I began taking Provigil for the CFS. It has been wonderful. It hasn't relieved my symptoms completely. Far from it. But, when I don't take it, I am amazed at how I was able to function with the exhaustion I was undertaking. No wonder my brain was mush. My memory was gone. Reaction time was slow motion. I am happy to say that I feel good all the time and tired some of the time. Before Provigil, I was exhausted, incoherent and just reacting to stimuli around me. I am thankful that I didn't have a car accident after all the times I got home without remembering the drive, or the episodes when I woke up to my vearing off of the road. I always explained that my exhaustion felt like a computer that went into sleep mode. The computer was "on" and ready to carry out a command, but the monitor was blank and the operating system standing by. Like the old time saying, "Lights are on but nobody is home." I'm so happy and thankful for Provigil.

But, I still suffer from overwhelming desires for daytime naps (which suck all the rest of my energy and leave me drained after I am forced awake), overwhelming fatigue if I sit still for 10 minutes or more (I play pop-a-shot if I get tired at the computer or I get up and grab some snacks to munch on), uncontrollable sleep attacks in embarrassing public situations if I am forced to sit still, and lastly I'm still extremely groggy in any situation when I've fallen asleep and am trying to wake up including each morning. But thankfully, in each of these situtaions, I experience fatigue only when I've allowed myself to slow down and/or sit for 10 minutes or longer.

I have some little things I do to help my fatigue. I can alaborate furthur at another time since my evening has so quickly turned to morning while I write about my experiences.

My goal is to advocate to others, who experience fatigue, some possible underlying causes and to minimize their time in reaching them. I hope likewise, others who have felt what I have and have relieved the fatigue further than I, will willingly pass the same experiences on to the readers and myself. My objective is relief, peace, and motivation to live and love life to it's fullest!

Tired but excited with what the future holds,
Angie