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How do you cope with chronic fatigue syndrome?

Diagnosing CFS requires ruling out other causes of chronic persistent fatigue, including a stressful lifestyle, cancer, or other illness such as adrenal or thyroid disorders, HIV, or AIDS. Since there are no laboratory tests that specifically make the diagnosis of CFS, the diagnosis is based on symptoms. People with CFS experience the following symptoms:Fatigue: People with CFS have long-term fatigue (lasting longer than 6 months to a year) that cannot be explained by other diseases. People with CFS may have had a previous infection. They are tired and "run down" during the infection, and the fatigue continues after the person has recovered from the illness.Cognitive difficulties: A typical complaint of people with CFS is that they have problems with short-term memory but not long-term memory. People with CFS may have problems finding or saying a particular word during normal speech (called dysnomia or verbal dyslexia).Postexertional fatigue: Postexertional fatigue may also be a problem for people with CFS. They are excessively tired after doing normal activities that were not difficult in the past.Fatigue after sleep: People with CFS also complain of fatigue even after long periods of rest or sleep. They do not feel refreshed after sleeping.Depression: People with CFS may become depressed because of difficulties performing at work or home, but depression does not cause CFS.Other symptoms that may be seen include headaches, muscle aches, sore throat, and even mild fever.
36 Responses
Avatar universal
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.
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I am so frustrated and so angry! I have been suffering with this for almost 4 years now. I have gone to several doctors, only to be told the same thing, "It's depression!" I know my body and I know my mind, and this is NOT depression! When it feels like someone has pulled the plug from my body and every ounce of energy is being drained, and I don't have the energy to even sit up. That is not depression! I admit I am probably somewhat depressed because this goes on daily, and anyone would be depressed if they don't have the energy to enjoy their life anymore. I am at a loss here!
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I have been dxd with CFS for over a year, but have had it for much longer than that. I am a 29 yo Mother of 2 boys, I am also a full time nursing student. That, most people say, can cause CFS.   I take methlyfenidate ER once daily in the am and it lasts about 8 hours. I do, however, work at 5am so that wears off about 1pm for me. Besides using the drug to help me with energy, I have found that a diet rich in fruits and veggies really helps me to feel good. Getting out for a good walk to help me sleep good at night is also a great help.  The WORST thing that I can do is sit around and think about how I really feel. If I do start feeling this way, I try to get up and go for a walk or play with my kids.  Hope this helps. :o)
Avatar universal
I have been suffering from CFS for 8 years.It started after I was exposed to mold at the public rec center where I had been exercising 5 times a week. I got seriously ill from the mold, and it took me two years to find a doctor, a naturopath, to help me heal (ND's are licensed in our state). After clearing out the massive fungal infections, we have been working on strengthening my immnue system and restoring my liver to good health. I am now able to do part time work from home and mild exercise, although I have to be careful not to do too much or I will crash for days. I see progress every day now, which helps, as there were many years I was afraid I would never get better.     I have gone from sleeping 23 hours a day to "only" 9-12, which is HUGE! I am not perfect yet, but haven't given up hope for achieving it.I would suggest being tested for mold (you'd be surprised how many houses,apartments, schools, offices and other buildings have moisture problems. The government is very behind on the dangers of mold in the U.S.) Digestive problems may also be an issue- I was malnourished for years because I was not able to eat or properly digest food (mine was caused by the mold, but there are other reasons). Once again, see an ND if you can. I saw a gastro, but he was horrible, so I am not a fan. There may be good ones that don't depend entirely on needless drugs and are able to see outside their box of knowledge. Also check for intestinal parasites- approx. 85% of Americans have parasites, and if you are sick you are likely not able to fight them off. Your best bet is to find someone who is not interested in merely drugging your symptoms, but who cares enough about you to find the KEY to your problems and help you through the struggle. It's not been easy for me by any means, but it has been worth it.    Above all, do your best to stay positive. Watch, read, and listen only to positive things.That means forget the news, which has been spreading nothing but fear and terror for the past 8 years. Humor truly helps to heal, and meditation and prayer will also help you on your road to better health. Wellness CD's also help.And keep in touch with your friends and family- they love you and even though they may not entirely understand your illness, they care about you. Good luck to all.
Avatar universal
The doctors are still trying to figure out what is wrong with me.  I have joint pain, achiness, headaches almost every day, sleeping problems and severe fatigue.  Often times my appetite is off.  One year ago I was told I was depressed, so I had to go to a counselor, and still have not improved.  I am sixteen and do not want to deal with any of this. Dancing is my passion ever since I was three years old, this past week I decided I could not dance, because the pain is so bad.  At first they said a reason for my joint pain was because of joint hypermobility. I was put into physical therapy, and I was not improving at all, so I was told to go back to the doctor. They are running blood and urine tests. Also, I am going to do a sleep study in about a week, maybe they will find something.  I wake up feeling more tired than when I went to bed. It has been affecting me so much, I am not doing well in school. I cannot focus and cannot retain information.  I have been in and out of the doctors' offices for the past few months. My symptoms sound like chronic fatigue. I have been taking over- the- counter medications for energy, sleeping, and pain. Nothing has been working.
Avatar universal
THE BEST and most comprehensive overview of CFS- thank you so much for this well written piece. I am a research junkie and I haven't found such a thorough explanation as of yet and I've been at it for months- Great job!
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I have had CFS for many years and was getting worse every year. Just this August, I thought I would not be able to work again. My physiotherapist gave me a magazine with an article about Serrapeptase in it. Since I didn't have anything to lose, I've tried it and now I'm almost as good as new after 4weeks. Totally amazing! Please, please try this natural remedy made from enzymes from silkworm cocoons. I know it probably won't cure everyone, but it works for me. I cannot stress enough the joy of getting my life back again.
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I've only had CFS for half a year. I've not been able to attend school in that time. My mom has it too. I've suffered from depression a lot in the past 6 months. I can't hang out with friends or go out like normal people. The way I usually cope with CFS is to tell myself every day, "I'm going to change my life and make it better." I also try to make myself not to hate my life. Communication with people is important such as talking with your friends over phone or email. They will cheer you up a lot. Your family can help to. They can visit talk and if you're well enough. Good luck, everybody!
Avatar universal
Thank you for this very informative work about chronic fatigue sundrome.  There was one thing I wished to clarify - at one point it is stated that for diagnosis, one must have a particular symptom OR cognitive dysfunction and in another it is stated that cognitive dysfunction is required. Therefore is the cognitive dysfunction an essential symptom for a diagnosis of CFS? I don't seem to have the dysfunction, however, I do have most of the other symptoms listed and my doctor is unable to make a diagnosis.  I am 46 and have had symptoms for 20 years now.  They seemed to start after I suffered from an intense episode of food poisoning while travelling overseas.  They have been worsening steadily.  About one day after exercise I have extreme fatigue, a strange muscular or connective tissue stiffness (not the almost pleasant kind one often gets after exercise), skin stiffness or hot spots (calves, soles of feet), mild headaches; sometimes I even break out in hives. Generally I sleep will but wake up very tired, and I suffer from localized psoriasis. I have tried antihistamines on a regular basis but did not notice any benefit.  I sure would love to get my life back!
Avatar universal
I wish I could give anyone reading this encouragement, but like all of the rest of you I have the same problems. I was diagnosed with EBV 20 years ago due to stress and nerves. I was told I had CFS about 10 years ago and suffered with it on and off for that amount of time. Two years ago I spent 55 days away from home which included 2 hospital stays, laparoscopic surgery, and two rehab admissions to help me walk again. I have to use a cane when I go out, but not in my apartment, due to a balance problem and falling. Ever since then I have not had any energy, no incentive to clean my apartment, except straighten up and put things back where they belong. I have one of our church deacons and his wife coming over to do things that I just can't do anymore. Then another girl is going to come and clean my apartment. I have sworn them to secrecy as to what they find. I don't like to go to bed at night and have a hard time making myself get up in the morning. Sometimes it's 11:00 or12-1:00 before I can make myself get out of bed. I do find myself cat napping during this time. I sometimes forget to take my medications and all I want to do is sit in my recliner and read or watch the boob-tube. I quit driving about 3 years ago because I didn't trust my own driving. It bothers me that I can't do some of the things I did 6 months ago. I know that my age doesn't help any, but I see people older than myself that have more energy than I ever thought of having.
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I feel for all of you who suffer from this problem.  I definitely have CFS and it is daily and persistent.  It got really bad last year when diagnosed with Sleep Apnea.  I struggled and have overcome the Apnea by losing 30 lbs. At 5' 7" and weighing around 150 lbs, I thought for sure my energy level would also increase.  It has not. I cannot work it is so bad and I do not know what to do.  Good luck to all of you.
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Hi I was diagnosed 3 years ago with CFS and fibromyalgia. This was after having glandular fever. I was in a wheelchair for 6 months and unable to work for considerably longer. When I did go back to work I couldn't even remember how to get home! From not being able to walk up the stairs without clinging to a banister and one foot at a time, two days after my first session I walked upstairs unaided and normally. I still suffer from CFS and probably always will but it is managed now. My partner knows when I do too much and I slow down and recover very quickly now. I do suffer pain occasionally, but I lead a 99% normal life now. I cannot stress enough how treatments helped. I was told by the doctors that heat would help with pain relief. It did nothing at all. However a cold wet towel draped over my body made the pain reduce sufficiently for me to cope with it. I really do wish you all well and would encourage the use of alternative medicines as I feel conventional medicine does not really recognize these illnesses and we fall through the system.
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I was diagnosed with CFS a few months ago after suffering for quite some time. I was also diagnosed with fibromyalgia. I take different medications for all of this, but nothing seems to have a long lasting effect. I take gabapentin and not sure if it is really helping me at all and was wondering if anyone has ever taken this and did it help. Right now I am on short term disability because I could not do my job effectively. I am finding that a lot of people don't seem to understand what these conditions are and look at you as you are lazy. I was also wondering if anyone has ever experienced numbness, because I have it in my left leg above the knee. As you might be able to tell that I am having a very hard time right now dealing with all this pain and tiredness and was put on anti-depressants. I just hope that this gets better in time but my doctor feels that it will not because of the length of time this has been going on. Can anyone offer any information about the drug I am taking and if has worked for them. Thank you all ahead of time for allowing me to go on.
Avatar universal
I was put on Gabapentin,  for my bi-polar, it didn't help me.  I ended up on Lamictal, Zoloft, Gabitril and Risperdal. The Zoloft is great and the Lamictal too. The Gabitril and Risperdal aren't for depression. I had gastric bypass and can't take extended release meds. My rheum. doctor recently put me on NUIVIGIL for energy and it is GREAT! I hope that this helps someone. I have CFS, fibro, osteoarthritis, myofacitis, loss of cartilage throughout my body, and at 41 I am not happy w/any of it.
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Check on general anesthesia me and one of my girls have all those problems put together. After we had general anesthesia, I had problems for 30 plus years and my girl for four years. I can't say much because I can't type much, but to me the body has kept the drug in the blood stream including the muscles and brain that is why we can't do much. You can't even drink a beer.  You feel like your dying. Check on these.
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KAISER PERMANENTE Valacyclovir approval for CFS after a 6 month fight! Please pass this on!!!!    To: Francesca E Owens  From: CHAD MILLER, RPH  Received: 07/18/2011 11:19 AM    Hello Francesca    I wanted to let you know that based on Dr Edell's recommendation, the Valacyclovir has been non-formulary approved. This medication will now be covered for your applicable copay. Feel free to call or reply if you have any questions.    Thank you, Chad Miller, PharmD, BCPS  Clinical Pharmacy Specialist in Primary Care/Southwest Denver Colorado
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Secret Combination News: CVS / Fybro / Depri / Bowel:  results are exceptional and go around the world:    solution comes from the gut ... the structure is altered by stress ..  nutrients and medications are not absorbed: lack of energy, vitamin deficiency, many possible physical consequences. Healthy diet, extra vitamins or medicines do not really help until the intestines work normal !!!!!Spread the message .......    Help others ...    nothing comparable    A large pinch of green clays and a little herb Oregano between food mixing;   2x a day.    Verify that the green clay is for internal use. Also sold at the pharmacy  a pack costs only 7 euro. Capsules (in store) cost more expensive.    Oregano is known as an herb that belongs on pizza. In shops, supermarkets and markets selling ordinary.    A large pinch of clay is much less that what is indicated on the packaging.  Don't mix in water. The take apart of green clay can cause constipation. Oregano  kills some bad bacteria, but these must be disposed of by the green clay.  When green clay and Oregano are not  used together, the condition even worse.    After about two weeks  the intestine takes back all the nutrients from food.  Before persons ate it, but got no energy from the diet.  Medication may be absorbed better. (But don't  take clay+Oregano together with medication, but at a different time of day).   Now  detoxification works optimal.  During this period, additional fatigue and muscle aches may occur.  After these two weeks : maintenance dose of 1x per day.  After a month physical condition becomes better.    "The proof of the pudding is in the eating"    -LiveScience  -S.Young (Cornell University)  - "Science or quackery?" Ben Goldacre    KD.      Disclaimer: fatigue may result from an illness. Please get a doctor to be examined    ps  capsules will soon be sold in the pharmacy?
Avatar universal
True, I never rested but I loved my life. I didn't know it took so much energy to be me! The docotor I now have, help me to understand that doctors don't really understand CFS. What helps me cope is educating myself about CFS. Educating myself about the medication prescribed to me the benefits and side effects. When I talk to my doctor we're working together. That helps me cope as well as having realistic expectations. I HAVE CFS! I don't feel well most of the time. There in no medication or dietary supplement that will have any lasting effect. Only God's Kingdom under Jesus rulership will bring an end to all illnesses. Knowing this also helps me cope.
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My Chiropractor actually is the one who told me he believes I have CFS and Fibro and Osteoarthritis.  I am 49 and have suffered like this for 11 years.  The trigger for me was a car accident and the death of my daughter.  I have not slept good at all for 11 years and I do take OTC sleep aid - Advil PM & melatonin.  Anyway - it flares up and gets so bad at times that the intense pain and the feeling of exhaustion is more than I can handle and I have handled ALOT of pain!  So that is my story.  I am just starting to research all of the above as I have not wanted to hear any diagnosis until now.  I have to accept that I am going to have to do SOMETHING or I will not survive.  I am against MEDS totally! and I will try the natural route and HOPE for some success.  One day at a time.  Any help on NATURAL cures or treatment would be appreciated!  Dawn
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