Patient Comments: Chronic Fatigue Syndrome - Coping

Question:

How do you cope with chronic fatigue syndrome? Submit Your Comment

Comment from: Pepper, 65-74 Female (Patient) Published: February 17

I am 67 and have had chronic fatigue syndrome (CFS) for 30 years. These are what help me: Multivitamin, like Geritol. Doxepin 25 mg helps with muscle pain, sleeplessness, and evens out mood. Only negative is it kicks up sweet tooth and a little grogginess most days. Ribose helps a lot with added stamina. I walk every day 60 minutes indoors or outdoors. Vitamin C to prevent non-stop colds, also Zicam Rapid Melts help. For CFS hair loss, biotin, MSM (methylsulfonylmethane), and fresh squeezed cabbage juice all help a lot.

Comment from: Gillian, 55-64 Female (Patient) Published: November 29

I am 62 years old and was diagnosed with chronic fatigue syndrome 2 years ago after over 20 years of doctors telling me nothing was wrong. I deal with it by gardening and doing leather work, making purses, wallets, etc. I have to be careful not to over exert myself, else I will be I'll suffer up to a week afterword. I normally sleep a full 8 to 9 hours at night and take a nap every afternoon. By doing these things I can generally be more productive.

Comment from: 35-44 Male (Patient) Published: April 19

I'm still trying to find a medication that works for my chronic pain and chronic fatigue syndrome. Extended relief medications aren't an option as most of my small intestine has been bypassed in a surgery. Morphine 30 mg 4 times a day gives no relief. I am allergic to methadone and Norco. Percocet has no effect. I am at a total loss and my pain is nonstop. I have chronic pain syndrome with no cause and fibromyalgia has been ruled out. I have taken alternatives like antidepressants, anti-seizure and others medications. I just want to be able to wake up and not cry as soon as my body moves.

Comment from: hmj, 45-54 Female (Patient) Published: February 01

I have hypothyroidism and chronic fatigue syndrome. My doctor prescribed Provigil and it gave me back my life. I can't' afford to fill the prescription in the US, so have to get it filled in a Canadian pharmacy. But I call Provigil my 'stay alive' pill.

Comment from: CrazyNanna, 55-64 Female (Patient) Published: November 04

I cope with my chronic fatigue syndrome by first accepting that I have to size down my life. I exercise every day I can on a graded level; yoga and walking or cycling or swimming. I ensure I have an extremely healthy diet. I keep away from negativity and that means not listening to the news, not reading newspapers and eliminating friends who are negative from my life. I also spend 15 minutes on waking confirming all the good and positive things I have to look forward to that day. I have to have a strong mental attitude. I also try to eliminate stress from my life. No alcohol and early nights with good quality sleep is so important; and mixing with positive people.

Comment from: Struggleisreal, 25-34 Male (Patient) Published: November 29

Get tested for mycoplasma. This bacteria has been found to lead to chronic fatigue syndrome, rheumatoid arthritis, and fibromyalgia. M. genitalium is transmitted through sexual contact and is difficult to be found by the urologist or gynecologist who tests for it. But there are definitely ways to get tested, other strains of mycoplasma are M pneumoniae. This one leads to upper respiratory symptoms. There are other strains of Mycoplasma so look into it. I hope this helps, be good and stay strong!

Comment from: Mel, 65-74 Female (Patient) Published: February 02

All I can say is that after that nasty virus I got on the cruise ship in October, it knocked out my immune system. I can only now, after 4 1/2 months, go to the store, maybe walk for 5 minutes outside and then rest all day long. If I do more, I am punished by my chronic fatigue syndrome. I wake up with a nasty sinus and back of neck headache, fever, stomach issues, and IBS (irritable bowel syndrome). I am an otherwise healthy 66 year old, but this has made me someone else. A sick person. Golden years; what a joke! My blood tests are normal. Another joke. How can that be! I take NSAIDs for relief of headaches. If I ignore the symptoms and do not rest for hours, even days, I get flu symptoms the next day. Sometimes they last for days. I have no answers. This is not living.

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.

Fibromyalgia Overview Slideshow
Comment from: Ben 129, 55-64 Male (Patient) Published: April 29

Take Adderall for energy. My doctor put me on two 10 mg pills a day. That has done wonders. If you are on statin or fibrate, get off, that"s causing the chronic fatigue syndrome (CFS).

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: Abbegirl, 55-64 Female (Patient) Published: September 04

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!

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

I was diagnosed with mononucleosis at the age of 18. After one month, I was better, only to succumb one week later after a heavy 2 hour workout. This first bout of fatigue lasted 9 months straight, with zero reprieves. Everyone around me thought I was nuts and it was all in my head (family members are surgeons and nurses). I was a reasonably high-level athlete at the time, so this whole thing blew my life away. Incidentally, back then the term CFS had not yet been coined. The next several years got better, with the bouts lasting less time (6 months, then 4 months, then 1 month at a time), and I eventually began to know when a bout was going to hit. 25 years later, I am just getting over another unexplained 2 week bout. This being said, when I'm healthy, I'm healthy and I remain an active and competitive athlete. The best luck I've had in all these years is D-Ribose, which I just discovered this past Fall. I wouldn't wish this upon anyone; it really had a huge negative impact on my life, especially during my 18-25 year age range. My wife of 16 years still thinks I'm a hypochondriac when I get bouts. This is arguably more frustrating than the actual fatigue and I believe this extra stress point only makes it worse!

Comment from: 45-54 Female (Patient) Published: March 13

I was diagnosed with CFS after an initial incorrect diagnosis of mono a year and a half earlier. I found the greatest relief from acupuncture and Chinese herbs, but also got noticeable results from anti-depressants and naturopathic treatment, in that order. My symptoms disappeared entirely for several months after the birth of each of my two children but returned 6-9 months later. My symptoms improved very gradually over the next several years and disappeared entirely when I began early symptoms of menopause at age 38. I have been able to lead a completely normal life for the last 10 years. No one has ever been so happy with menopause.

Fibromyalgia Overview Slideshow
Comment from: sarabelle819, Female (Patient) Published: October 15

I am extremely frustrated with chronic fatigue syndrome. I've gone to many doctors and it feels as if I've tried every drug out there. The best drugs for me are Wellbutrin XL and Concerta. They do not erase the problem, but they are the most helpful to me. When ephedrine was on the market, it was my best friend. It's technically on the market again, but not as good as it used to be. I recommend that you talk to your doctor about Concerta, Adderall or some other form of Ritalin, it's the only thing that's given me hope.

Comment from: Milly, 25-34 Female (Patient) Published: December 07

I really need to figure out how to cope with chronic fatigue syndrome. My life is falling apart my partner does not understand how hard this is for me and is constantly making me feel guilty. I can't see an end and I'm so worried I won't ever get back to normal.

Comment from: Jaybrooke, 65-74 Female (Patient) Published: June 16

Debra, are you taking thyroxine, or equivalent for Hashimoto's disease? I was told I had chronic fatigue syndrome (CFS) years ago but I disputed it and was given a trial of thyroid hormone and became 50 to 60 percent better. Hashimoto's has many and varied symptoms similar to CFS. I started on a very low dose and it was upped over 3 months; amazing! Although I am not 100 per cent well my life is not the nightmare it was. May not be every one's answer but could be yours!

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.

Comment from: Bek, 19-24 Female (Patient) Published: October 07

I'm 24 and have been diagnosed with CFS. I was told it was fibromyalgia by several doctors and never felt right with that diagnosis. In reading about CFS it fits my feelings like a glove. But...now i feel hopeless. I'm a pre-med student that has to come to the realization that I simply can't keep up with all the classes and homework anymore. I feel as if my dreams were taken away. I'm hoping I can figure out how to get back in the "swing of things".

Comment from: skinnyminny, 25-34 Female (Patient) Published: June 22

I was diagnosed with CFS almost 20 years ago when I was in high school. Now, my greatest (only) accomplishment each day is getting my daughters ready for school and providing something that resembles a healthy, well-balanced supper.

Comment from: PixieBoots, 35-44 Female (Patient) Published: May 26

I have had fibromyalgia/CFS for over 4 years now since the birth of my second child. Over the years I have tried everything. I finally settled on a more natural approach. I discovered 'Fatigued to Fantastic'. It is a powder that is mixed with juice/water to make a relatively nice drink. It is packed with massive doses of just about everything your body needs. I started to feel better within 3 weeks and within 3 months I found my mental health was better and I was sleeping better and I could even go out cycling with my kids and go on the trampoline and not pay the price the following day. On a scale, I feel about 80% better, still not perfect, but I have my life back now. I am not saying this will work for everyone, but it has changed my life for the better. I have been using it for about 9 months now with only one 'episode' where I had a viral infection and anyone knows that illness makes CFS/FM worse.

Comment from: Bonita, 35-44 Female (Patient) Published: May 17

I have been diagnosed with chronic fatigue syndrome (CFS) for two years now, although I have suffered with it for the last five. For me, it is an ongoing process. I am able to make it through most days with the DMAE and a vitamin B-complex that I take in the morning for brain fog. (I have just recently come across this and discontinued my Vyvanse prescription.) and I take Neurontin and Ambien at night. For the most part, I am living a normal life. I just have to remember not to push it. Simple things can wear me out (a trip to Wal-Mart, walking with my husband around the block, etc.). I am learning more and more about me and how to live with this. When I forget and push my body, or if I just have a bad day, I take it in stride knowing that this too shall pass.

Fibromyalgia Overview Slideshow
Comment from: 35yrmalecfs, 35-44 Male (Patient) Published: May 17

My chronic fatigue is more mental than physical. I do get physically fatigued and sore after exercise or waking up and can't overexert myself. I get dizzy reading and paying bills. I have to pace myself, but make sure I get out and do some yoga and walking. I use a sauna to help with the sickly feeling and stress. I avoid chemicals and preservatives. I minimize caffeine, if not avoid it completely. Caffeine makes me nuts. I take vitamin D3, C, A, E, and B vitamins. Avoiding stress is key, and my stressful job pushed me into a hole.

Comment from: embers, 35-44 Female (Patient) Published: April 03

Some days, I don't cope. I just lie in bed, wondering why I am so tired after waking up. My eyes run and tear every morning. If I have appointments, I push myself to do them. I pretend I am OK on the outside. This is embarrassing to have. I hate it. I've had CFS for 12 years now, and it's worse, not better. I have hope that someday this will be fixed.

Comment from: Billie, 35-44 Female (Patient) Published: November 25

It took a long and painful time before I reached acceptance with my chronic fatigue syndrome. I now train in meditation, relaxation techniques and tai chi to get better. Currently, I am free from pain and extreme weakness most of the time, but my activities (working, staying with friends, household, exercise) are really limited. I need 14 hours of sleep every day. If I decide to do more things, then I suffer, but at least it's a choice, unlike before, during two years of daily agony. Acupuncture has helped strengthen my liver and spleen. Small doses of caffeine (not coffee) give me energy in the morning, and homeopathic medicines help me sleep at night. For me, the key thing is to be aware of my symptoms so that I know when to stop, although it is not easy.

Comment from: Katy, 35-44 Female (Patient) Published: November 11

To cope with my chronic fatigue syndrome, I have been taking magnesium. It helps with the pain. Also, I started acupuncture. It has helped some. To help me sleep, I use valerian drops.

Comment from: 35-44 Female (Patient) Published: August 13

I find chronic fatigue syndrome (CFS) to be extremely frustrating. I am a mom of two young boys, 7 and 8 years old. The limits CFS and fibromyalgia have put on my life is extreme. After much frustrated searching, I have come to this conclusion: It is not curable, only manageable and even then still unpredictable. Conventional medicine is extremely limited. Homeopathy is an ongoing management tool and is so extensive in options, you need to see what works for you, and use it on a regular basis. It's also a very expensive option, but you get to a point where you feel as if you have no choice. I think the biggest problem with this illness is your mindset. I am a born fighter and battle to accept that I cannot fix this! This has a huge impact on how I deal with CFS on a daily basis. I am constantly fighting my natural instinct to beat this, versus my limitations. I feel that perhaps if I didn't fight it so much, but rather accepted it and learned to live within these limitations, life could be easier. I have been diagnosed for three years now, but I have suffered with it longer than that. For me, CFS is a daily struggle. When I wake up, I know pretty much how my day will play out. Having a good support system in place is essential, and get over the guilt!

Comment from: iametrinity, 45-54 Female (Patient) Published: August 17

At first all I did was cry my life was no life. Then gradually I started to force myself to take very short walks, listened to medical tapes soothing music, hot baths, less eating, less pain, and less meds. Think love, think god all the time and you'll be surprised at what energy you have.

Comment from: 35-44 Female (Patient) Published: August 17

Chronic fatigue has really changed my life. I can no longer do as much as I used to and that really frustrates me. I have found that stopping and resting when I feel tired helps. If I push it, I pay with worse fatigue for days. Above all, I try to get at least 8 hours of sleep a night. Any less than that and I can't even function the next day. Family's, please don't give us a hard time! The fatigue and pain are real.

Comment from: maria fisher, 55-64 Female (Patient) Published: May 01

Rest and sleep have helped me the most. Conversely, lack of rest and interrupted sleep have hurt me the most. I have had the pain and fatigue part of the illness for many years, but I was not diagnosed with CFS until recently. At that time in addition to severe pain and fatigue I developed mycoplasma pneumonia which just wouldn't go away. In my effort to deal with my symptoms, I consulted with five different physicians before getting one who would really help me. During this time I had all sorts of modalities (can't remember them all). Cortisone injections helped as did acupuncture and whole body massage, but the best was always lots of rest and sleep.

Published: July 30

I seem to find that taking Dexedrine in the morning helps.

Fibromyalgia Overview Slideshow
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