Patient Comments: Chronic Fatigue Syndrome - Symptoms

Question:

What symptoms and signs did you experience with your chronic fatigue syndrome? Submit Your Comment

Comment from: Kitkat, 35-44 Female (Patient) Published: June 19

I had tiredness, lassitude, profound fatigue and body aches. I had lots of tests and workup. Nothing was found. After years of misery and no answers, the doctor gave this diagnosis of chronic fatigue syndrome. Nothing really helps, other than listening to my body, comfort measures, and I work less than I used to.

Comment from: tiptip, Published: November 13

I hated the barium swallow test. The barium is like drinking chalk. I had to drink something like a seltzer first. You want to burp badly but technician told me to hold it in. Boy, was that hard! When the doctor comes in he tells you when to drink the barium and he takes x-ray. The last part was uncomfortable. The table tilted and the technician held a cup with a straw with the barium in it. She put the straw in my mouth and I had to suck. That was hard because I felt like I was sucking air. After it was over I had chalk all over my mouth and I let out a big burp. It's over. So if you do the test I hope you have a nicer doctor than I had.

Comment from: Yogi, 45-54 Female (Patient) Published: March 16

I put a lot of strain on my body because I work 75 hours a week. And I guess pulling a muscle for the first time in my life, is the price I paid. I pulled my hamstring, probably grade 1, while trying to stretch a static stretch. The pain shoots from the left of my knee (back of knee) to my femora. It is weird how it feels as if a car crashed into my thigh. The muscle and tendon around my right knee is swollen and tender and 24/7 inflamed and painful. I cannot really afford to rise my leg above heart for 5 days to recover (RICE method). I will get ibuprofen (anti-inflammatory). It is a much pain as a bad sciatica or an open nerve on a tooth.

Comment from: Mellisa, 45-54 Male (Patient) Published: November 19

Fruit juice was the best remedy for constipation in children. I can't find any better remedies that can help my daughter to get rid of the constipation. I highly prefer the pear juice and the apple juice for constipated child. My daughter is fussy, so I only add 1 ounce of fruit juice to dilute with fluids. She did not notice and was able to finish the whole bottle. It helps her to get rid of the constipation problem when she was only 2 years old.

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

I broke my humerus from a fall, my first broken bone.

Comment from: 007chef, 45-54 Female (Patient) Published: October 02

I am 37 years old, diagnosed with strep throat! What seemed to be a weekend getaway with the wife, and little cousins blowing up balloons with laughter turned out to be a terrible weekend. Strep throat for eight days with enormous pain. I had unbearable throat pain with ravaged tonsils and fever. It beat me down. If one truly acquires real strep throat, yikes! It may seem like it will never end, however thankfully there is light at the end! Humbling experience.

Comment from: Arihana, 65-74 Female (Patient) Published: September 22

I am 68 and while I was clinically diagnosed with fibromyalgia only last October, 2014, I had been dealing with the symptoms for over 30 years. I think there is also chronic fatigue syndrome (CFS) in the mix because the degree of exhaustion I suffer is awful and at the moment seems to be getting worse. I slept for 15 hours the night before last and woke up exhausted. As with most other sufferers, I was told my issues were related to depression, arthritis, sleep apnea, etc. I think having pneumonia at 11 months followed by bronchial colds as a preschooler and finally developing full scale asthma at the age of seven is quite possibly the reason for my problems now. I have had ill health all my life and the fatigue kicked in after I married a guy with two early teen children, then had a child of my own having had one from my first marriage. It was all too much for an already fragile system. Recently my husband and I had a month overseas. I had had a bad flu and a bout of diverticulitis prior to us going, then came home with a chest infection after a trip which I realize now, was too much for me. All I want to do is stay in bed and sleep at present. I feel useless and it is hard not to let depression in. When I force myself up, I can do only a tiny bit then have to rest. It's driving me mad. I hope I will gradually stabilize a bit but I'm not counting on it. My husband does try to understand. I am fortunate in having one close friend who really does know how I feel and that helps so much.

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

With chronic fatigue syndrome I have fatigue in every muscle, including brain, digestion, breathing and eyesight problems. I have extreme constipation after any exercise (1 tsp psyllium husk in a glass of water a day helps me), light and sound sensitivity, brain fog, joint and muscle pain, dry itching skin, bloating, short term memory problems, and disorientation.

Comment from: Tiredtodeath, 55-64 Male (Patient) Published: November 18

My symptoms are vertigo, extreme fatigue, being unable to breath lying down unless I sit up for a few hours to get enough energy, feeling like I'm dying, leg weakness, nausea, burning between toes without obvious cause, memory blackouts, confusion, loss of memory and unable to remember names for things or what I was doing. I have enlarged spleen (affects lymphatic system), insomnia and erratic interrupted sleep. Ten sleeping pills kept me awake all night, on other nights 1 pill helps with sleep after an hour or 2 or 3. I have 5 to 6 hours of sleep/night on average with 5 to 6 hours lying awake trying to get to sleep. Only L-theanine helps with mental functioning/memory. I have tinnitus and recurring skin infection. CFS (chronic fatigue syndrome) came after 3 months of skin infection and pneumonia. I have abnormal low neutrophils/monocytes, white blood cell counts which dropped 50% after infection, low RBC on one occasion, sudden increases in fatigue for 2 or 3 hours, unable to recover energy after 2 to 3 days of extra sleep, anxiety and depression.

IMAGES

Chronic Fatigue Syndrome (CFS or SEID) See a medical illustration of fibromyalgia trigger points plus our entire medical gallery of human anatomy and physiology See Images
Comment from: Female (Patient) Published: October 19

I was diagnosed in the second grade after being sick with flu like symptoms and severe fatigue for a long period of time. In the years since I have continued to deal with bouts of extreme fatigue that usually results in severe nausea and debilitating fatigue along with other symptoms such as headaches, memory problems, leg pain, sore throat etc. I am 29 now and in times of stress or if I "overdo it" I end up vomiting and I am incapacitated for several days- sometimes so ill I have to get iv fluids. I wish that I didn't have to deal with this alone- I don't currently see a dr. that knows anything about the illness.

Comment from: Rosi, 55-64 Female (Patient) Published: May 22

I'm tired all the time and have no energy; I have chronic fatigue syndrome.

Comment from: Hologram, 65-74 Female (Patient) Published: December 06

I have been diagnosed with CFS, and have been afflicted for years. Taking Vitamin D has changed everything. I have not had one bout of fatigue, sore throat, chills, swollen glands, muscle and joint pain since taking Vitamin D3.

Comment from: Gigi, 65-74 Female (Patient) Published: October 15

I have short term memory loss, anxiety, bowel problems, shortness of breath, sore hips and unfortunately most of the other symptoms. I also have FMS (Functional Mobility Scale) at 14 points. I have a great family and friends that keep my spirits up.

Comment from: jeannielou2, 55-64 Female (Patient) Published: June 01

On 4/4/90, I became ill at work. My heart felt like it was beating sideways, and irregularly. I was dizzy and had loss of balance. My back hurt. My glands were swollen a little and sore. I was experiencing a shock-like feeling going from head to toe. In general, I felt "weird" and unwell. I left work early and went straight to my doctor. I had EKG changes, a low-grade fever, could not stand with feet together and arms at my side without falling, and the dizziness was worsening. I also had a bad headache, which I had never had before. I was not a "headache" type of person. I was admitted to the hospital and all tests were negative. I was in there 10 days. On day 8, I was put on a tread mill to test my heart and I could only last 8 seconds. On the first night, I had myoclonus in my right foot, which progressed into full blown tonic colonic- like seizures by the 3rd day, but did not show up on a standard EEG. A month later I had a second one which was read as my having myoclonus. When asked to hyperventilate, it caused the "seizures" as well as the photic stimulation. However, with all this going on, I was still diagnosed for 11 years as having "depression," a conversion disorder, or some other kind of psychiatric disorder. Even with the EKG changes and low-grade fevers. Oh, I also have tinnitus since the first week and muscle weekness. Other symptoms developed as time went on. 11 years later I was diagnosed with Myalgic Encephalomyelitis which I do believe is different from CFS but some insist it is the same thing.

Comment from: twolfe, 65-74 Male (Patient) Published: May 29

In short, there is no cause, no specific disease, no cure, no nothing. What a worthless article. Could have been summed up this way: We know nothing about this thing, so we gave it a name and having given it a name we are obligated to blather a bit about that which we no nothing, so reader, stop reading now.

Comment from: helpless mom, 13-18 Female (Caregiver) Published: April 04

My 14 year old was just diagnosed with CFS she had Mono 2 years ago she has been sick ever since headaches body aches sick to her stomach and she just wants to sleep. She does not make it to school too much it just seems to get worse. I don't know what to do for her. The doctor is sending her to physical therapy she is on a mild anti-depressant under the care of a therapist but nothing is working.

Comment from: deejdee, 55-64 Female (Patient) Published: February 13

I've had CFS symptoms for over 20 years. Diagnosis wasn't until 1998 and it was a relief to have a name to what was wrong with me. I have had. There were three good years between 1991 first onset until today 1995, 2004 and 2006 and part of 2007 otherwise I have been ill all that time. Tests showed I had had several viruses and one doctor suggested these caused the illness. Quality of life has not been high and my husband says I am too hard on myself trying to perform tasks, but it’s frustrating trying to keep a house clean and have some quality of life. In July last year after being bed ridden for more than a year, once again, I said to my husband that I can't live like this anymore. So from that day onwards I attempted to lead a normal life and just paid the price after. Before that I had been avoiding doing things and was miserable, now I am a lot happier and don't mind spending a few days in bed because I have been to the mall and bought a blouse, or visited the grandchildren, or had a meal out. Life is way better for us both.

Comment from: Maggie, 35-44 Female (Patient) Published: December 12

I have been suffering CFS since about 3 years ago in the best moment of my life. I had a successful medical practice, was able to take care of my husband and my house. A morning in January 2009 I woke up in the morning and told my husband: I think I got a bad flu. I had sore throat, generalized muscular pain, headache and general malaise. The days went by and after two weeks I concluded that it was not a flu and what I had was not normal. I was tested for every possible illness. I got tests that I even didn't know that existed. All this to been told that everything in my body was right. After more than 4 months looking for any help and any diagnostic, a neurologist made the diagnostic of chronic fatigue syndrome. Last year I was totally bedridden for more than 6 months. After this I got better and was able to return to my normal life. But about two months ago my symptoms are returning. I'm in pain and the only think I need is to sleep. I try to keep my normal life but my body betrays me. It is so hard.

SLIDESHOW

Chronic Fatigue Syndrome (CFS) Symptoms and Diagnosis See Slideshow
Comment from: Exhausted, 25-34 Female (Patient) Published: November 23

I have been suffering with CFS for about 3 years now. I had Ross River Fever and Glandular Fever before the CFS. I am exhausted most days, have sensitivities to bright lights, noise and temperatures, aching legs & feet, memory loss, dry mouth & eyes. I also have a vitamin D deficiency. My doctor is thinking of sending me to a CFS specialist in Sydney to help me learn how to manage the condition. I am still working full time but struggle with the demands of my job due to the debilitating effects of the illness.

Comment from: Bananas, 75 or over Female (Patient) Published: October 05

I believe that I have had CFS since the mid 1980’s, sometimes worse than other times. I have all the classic symptoms and for years my doctors pooh poohed my condition. I have made many, many trips to the ER thinking that my chest pain was heart related by every test under the sun. Believe me, when I had angina, it wasn't the same as CSF. Now I am 83 and I am experiencing the CFS more than ever, but I am lucky to be able to rest whenever I need to. I take Cymbalta but I don't think that it helps for I still have the severe malaise, muscle pain, short term memory problems, etc., etc. It's a bummer and the worst part is you look so healthy and feel so lousy.

Comment from: Daddy-O, 45-54 Male (Patient) Published: June 22

I had mononucleosis when I was 17. I am now 52. I get relapses or chronic fatigue syndrome about 3 or 4 times per year and they can last as short as a week, and as long as 3 months. Several things I have found that help are Alka-Seltzer Plus Cold (amazing) and guaifenesin (Mucinex). Also testosterone therapy has helped immensely. A nap in the late afternoon or early evening helps a lot too. I've just learned to cope the best I can, but I still can't help but believe there is something in the foods we eat that causes this.

Comment from: valerie, 45-54 Female (Patient) Published: January 03

I have significant short-term memory impairment. I thought I was getting Alzheimer's it was so severe. I had joint pain, shoulder pain, and knee pain. I also had constant muscle aches, and was always tired even after sleeping for 9 or 10 hours I still felt as if I didn't get any rest. Getting up in the morning was so extremely difficult. I get up around 6 but it takes me at least 2-1/2 hours to get dressed and out the door as I constantly rest in between my morning tasks.

Comment from: amanda, 45-54 Female (Patient) Published: October 13

My symptoms are well I’m always tired no energy headaches depression can’t sleep but want to, pains in my stomach, my legs arms everywhere just to walk to the letter box takes so much out of me and it has stopped me from been able to drive a lot of the time just want to stay in bed and my anxiety is getting worse.

Comment from: DreamingGirl, 45-54 Female (Patient) Published: October 13

Chronic fatigue made it impossible to return to work. For several months I literally hibernated because of my inability to ever feel rested. I lost interest in many things that always brought joy: socialization became extinct, unable to concentrate to read a book, watch a full length television program, (basically during severe episodes I just didn't leave the house and in many cases was unable to leave the bed. Doing better at present after a four day cyclic episode.

Comment from: julie, 35-44 Female (Patient) Published: May 18

Exhaustion. Even doing chores around the house tired all the time drained, mental dullness, 7 hour nap still tired.

Comment from: 13-18 Female (Patient) Published: May 12

I am a young girl that has been very recently diagnosed with chronic fatigue syndrome. I was told by several physicians that I was not experiencing a physical illness, but a mental one. This was not true, and for other sufferers of CFS, I'm sure you know the horrible feeling. I cannot attend school anymore, but my energy level is improving. I have been taking two helpful supplements: Vita-Big-Kids, and Magscorpblex. Also, light exercise every day (walking for 20-30 min.) helps a lot. Remember, everything could be worse, and although this illness is restricting and difficult, it's not life threatening! Stay positive :)

Comment from: d_rangel, 25-34 Female (Patient) Published: March 21

I am not sure if CFS is what I have but it seems to fit. I am a normal 25 year old woman not over weight nor under weight. I don’t have an eating disorder and no major change in my life but I have no energy. I get a normal night sleep and I work a normal 9-5 job 5 days a week. As soon as I get home all I want to do is lay down and rest. If I take my children to the park all I want to do is sit. Sometimes I feel as if I lose moments in time. For example when I am driving to work one min I am there the next I am here and even though I am fully aware of everything I feel like I was not. This is also affecting my sex drive, all I want is rest. I guess all I want is an idea of what this is and how to fix it.

QUESTION

What characterizes fibromyalgia? See Answer
Comment from: MaryB, 55-64 Female (Patient) Published: February 02

I was diagnosed with mono 20 years ago. I am a 59 year old female teacher who loves to exercise, dance garden, bike and enjoy life. When I feel good, there is nothing I enjoy more than to be outside all day and enjoy as much activity as possible. CFS usually hits me in the fall. My doctors think it may be exposed to viruses. Sometimes I am down for a week, sometimes 3 months. This past year, I found a doctor who took me off sugar, processed foods, tried to build up my immune system with many vitamins and supplements. It didn't seem to make a bit of difference. I am also on Cymbalta. I am going on a 3 month bout of "good days and crashing." Some years I am fine and other years I am just wondering when it will end. This is the first blog that I have read that I feel like you people understand my symptoms. Thank you! It was so good to hear other people do too much. I try not to beat myself up too much for that. I love you all and understand your pain.

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