AboutSuzan Jackson Expertise I have had CFS since March 2002. My 14-year old son and 10-year old son also has CFS. I have a scientific background (chemical engineering) and have read and researched extensively to try to help myself and my sons to improve our symptoms, with some success. I`ve also conferred with some of the top CFS doctors in the U.S. I have a lot of hard-won experience working with school systems to get appropriate support for my sons. This is a very debilitating and isolating illness, and I would be glad to help anyone else who is struggling with CFS themselves or with a family member. You can read about our experiences in learning to live with CFS at my blog: www.livewithcfs.blogspot.com.
Experience Have had CFS/CFIDS since 2002.
Two young sons have CFS/CFIDS.
Organizations CFIDS Association of America
Various listserves that provide up-to-date information on CFS research.
Question I'm seriously so tired during my waking hours that every second feels like a constant struggle underwater, uphill in February. If that makes any sense. I have horrible dreams every night. People say "we control our dreams...blah blah...just don't let yourself have bad dreams....blah blah.." but there's no controlling it. When I wake up, it feels like the sleep did much more harm than good. It feels like I never even wake up, like my whole day is just one dragged out dream. I've tried guzzling coffee, various meds and drugs but nothing helps. Exercise does nothing. It's terrible. I haven't been diagnosed with anything really except trendy problems like "Depression" and "Social Anxiety" and whatever other diagnostic flavor of the month's are.
I really don't want to do it, but will I need a sleep test to diagnose this? How do I convince these freakin doctors that I can barely make it through the day no matter how much or little sleep I get? Why don't they seem to care or listen?
Many thanks
-Adam
Answer Dear Adam -
First, I'd like to apologize for the long delay in responding to you. I've been very sick this past week and wanted to give you a thorough answer.
I am not an expert in sleep problems but in Chronic Fatigue Syndrome (CFS), an immune system disorder. So, I'll do my best to answer based on what I know, but you really need to consult with a doctor.
With serious sleep problems as you've described, you definitely should have a sleep study done. I know it sounds like a real pain to do, but it is critically important to either rule out or diagnose whether you have any primary sleep disorders, some of which can be quite dangerous. If you do have a sleep disorder, it can be treated.
CFS does cause sleep dysfunction, but it also causes many other symptoms which you didn't mention, including recurring sore throat or swollen glands, flu-like achiness, and an intolerance to exercise. That last symptom is a critical one in CFS: you may be able to exercise but within hours of any kind of exertion, you suddenly feel as if you have the flu and the resulting flare-up or crash can last for days or even weeks.
You'll see in the diagnosis section that one of the conditions you need to rule out before diagnosing CFS is a primary sleep disorder.
I also recently wrote about the sleep dysfunction in CFS on my blog. Whether or not you have CFS, this type of sleep dysfunction could be behind your problems (though you'd want to find out what's causing the dysfunction if it's not CFS):
So, my advice to you is to see a doctor right away and be sure to tell him or her about ALL symptoms, have a sleep study done, as well as any other tests the doctor thinks might help make a diagnosis. Sleep problems like you've described can be very serious and need immediate medical attention.
