Patient Comments: Chronic Fatigue Syndrome - Coping

Question:How do you cope with chronic fatigue syndrome?

Comment from: floss26, 19-24 Female (Patient) Published: February 20

I'm a 20 year old female who has chronic fatigue syndrome for 3 years now. It took my doctor 2 years to realize I had it, and it was not low iron or depression. I can't get a job as I am only able to stay awake for 4 hours a day and when I am awake I am tired and sore. I wish people would take this condition seriously as I have to live like this and I have no life now and am lucky my family is there for me as I have nothing else. There needs to be more support groups out there for us to deal with it together. Hope everyone who is unwell gets better soon.

Comment from: Jeb, 45-54 Female (Patient) Published: March 24

I am a middle-aged man who has had CFS for 10 years. It took me a while to accept that I can't cure this; I can only manage it. I have done that but regularly fall victim to the push-and-crash cycle: I feel good, do too much, and then crash. It takes weeks to get back to "normal." I take meds for mood (Prozac), sleep (Ambien) and pain (Flexiril) but Concerta has made the biggest difference; it regulates my energy level, helps me focus, and stabilizes my cognitive functions. I am able to be productive during the day (though I am still very tired at night). I hope this helps someone.

Comment from: Debra An, 35-44 Female (Patient) Published: May 15

I have had chronic fatigue syndrome, fibromyalgia and Hashimoto's thyroiditis since 2006. It took until 2008 to be diagnosed with CFS and fibromyalgia. I have been on so many different medications and most did not help: Wellbutrin, gabapentin, Motrin, Tylenol with Codeine, etc. Now I take Percocet and morphine to deal with the increased pain level. I also take Omega XL, which helps with the CFS, as I am not as tired as before. I think it's also lowered the pain a bit and helped with my memory issues, which were extremely bad, as I did not know where I was, previously. I also take an ADHD pill, which seems to help with my memory and has helped me sleep less. I read that the ADHD pill helps treat narcolepsy. My husband has noticed a great improvement with this drug. I rarely take naps during the day. I used to be bedridden and am now leading a halfway decent life. I treat what I eat as medication for my body. I eat to live! I crave ginger, salt, and other foods. Before getting ill, I was extremely active and loved fitness, including running, exercising (lifting weights, rock climbing, golfing, and surfing, etc.). Of course, having ADHD helped keep me full of energy.

Comment from: oooooooo, 35-44 (Patient) Published: October 07

Hi, I have had chronic fatigue syndrome for about five years now. I have been unable to hold down a job. Life can be a struggle but I have learned not to fight against it. You must not allow your illness to take over your life. Some days are a struggle and society does not seem to accept this as a real illness. We, however, know the truth and that this is a very real condition. This condition changes peoples lives and there families.

Comment from: sandy, 55-64 Female (Patient) Published: September 04

It's is good to read others comments and not to feel so all alone. I had mono over 10 years ago and have fought CFS since then. My doctor first sent me to see a psychiatrist but I knew I wasn't depressed, I just felt terrible. I still fight this. My doctor tells me not to get stressed. My mother died a few months ago, I fell off a horse and fractured my neck badly, my brother is going to federal prison, I lost my job, I am losing my health insurance, lost two dogs and a horse in the last few weeks, and now I sleep 16 hours a day. I can't get anything done, and hope no one thinks I'm being lazy. My sister swears on Standard Process Dramamine, but it only helps me a little. I'm on Lipitor and my legs kill me at night. Sleeping pills don't seem to work for me. Now I just pray for help. Thanks for listening (reading) because I feel a little better right now. Best wishes to everyone who fights this condition.

Comment from: orchidqueen, 55-64 Female (Patient) Published: August 20

I first got sick in 1999. I came down with a very bad case of mono and my life changed forever. My doctor sent me to a rheumatologist. All they want to do is put you on antidepressants. I discovered that DHEA works wonders and believe me it does! I started out on a huge dose and now am down to 25 mgs a day unless I'm feeling sick, then i take 50 mgs a day. It's a miracle worker!

Comment from: Once_a_hotshot, 35-44 Male (Patient) Published: May 01

I've had six years now of being tired. Luckily, I kept my job, family, etc. Work is tough since I am 1/10th the person I used to be. So when I tell my doctor I fear losing my job due to fatigue, he says I have anxiety and depression. It is funny how they won't admit they are wrong after failing for six years. Seriously, my impression of the U.S. medical system is very much decreased. The post-exertion malaise is so true. I find myself unable to move for 16 hours, and my wife will remind me that I washed the car, by hand, two days ago. That symptom is dead on the money for me. Overall, it is just so tough to accept that my cognition and memory are gone – while watching smokers and other people eating junk food have lots of energy.


Patient Comments

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Chronic Fatigue Syndrome - Symptoms Question: What symptoms and signs did you experience with your chronic fatigue syndrome?
Chronic Fatigue Syndrome - Diagnosis Question: Please describe the events that led to a diagnosis of chronic fatigue syndrome.
Chronic Fatigue Syndrome - Coexisting Diseases Question: In addition to CFS, do you have another disease or condition? Please share your story.
Chronic Fatigue Syndrome - Treatment Question: What kinds of treatment have you had for chronic fatigue syndrome? What medications do you take?

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