What is it like to have Chronic Fatigue Syndrome?
Insomnia Stress answers:
Despite the name, Chronic Fatigue Syndrome – also known as myalgic encephalomyelitis and post viral fatigue syndrome – is so much more than being tired. It is a severe complex neuroimmune disease.
The 2003 Canadian Clinical Case Definition is summarized as follows and symptoms from all of the categories are required for a clinical diagnosis of CFS.
1. POST-EXERTIONAL EXHAUSTION: There is a loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional fatigue, malaise and/or pain, and a tendency for other symptoms to worsen. A pathologically slow recovery period (it takes more than 24 hours to recover). Symptoms exacerbated by stress of any kind. Patient must have a marked degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.
2. SLEEP DISORDER: Unrefreshing sleep or poor sleep quality; rhythm disturbance.
3. PAIN: Arthralgia and/or myalgia without clinical evidence of inflammatory responses of joint swelling or redness. Pain can be experienced in the muscles, joints, or neck and is sometimes migratory in nature. Often, there are significant headaches of new type, pattern, or severity. Neuropathic pain is also a common symptom
4. NEUROLOGICAL/COGNITIVE MANIFESTATIONS: Two or more of the following difficulties should be present: Confusion, impairment of concentration and short-term memory consolidation, difficulty with information processing, categorizing, and word retrieval, intermittent dyslexia, perceptual/sensory disturbances, disorientation, and ataxia. There may be overload phenomena: Informational, cognitive, and sensory overload — e.g., photophobia and hypersensitivity to noise — and/or emotional overload which may lead to relapses and/or anxiety.
5. AT LEAST ONE SYMPTOM OUT OF TWO OF THE FOLLOWING CATEGORIES:
A. AUTONOMIC MANIFESTATIONS: Orthostatic Intolerance: E.g., neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension, vertigo, light-headedness, extreme pallor, intestinal or bladder disturbances with or without irritable bowel syndrome (IBS) or bladder dysfunction, palpitations with or without cardiac arrhythmia, vasomotor instability, and respiratory irregularities.
B. NEUROENDOCRINE MANIFESTATIONS: Loss of thermostatic stability, heat/cold intolerance, anorexia or abnormal appetite, marked weight change, hypoglycemia, loss of adaptability and tolerance for stress, worsening of symptoms with stress and slow recovery, and emotional lability.
C. IMMUNE MANIFESTATIONS: Tender lymph nodes, sore throat, flu-like symptoms, general malaise, development of new allergies or changes in status of old ones, and hypersensitivity to medications and/or chemicals.
6. The illness persists for at least 6 months. It usually has an acute onset, but onset also may be gradual. Preliminary diagnosis may be possible earlier. The disturbances generally form symptom clusters that are often unique to a particular patient. The manifestations may fluctuate and change over time. Symptoms exacerbate with exertion or stress.
A more detailed definition – the International Consensus Criteria – was published in 2011.
Experiences with Chronic Fatigue Syndrome?
I’m 17 and I was diagnosed with it a few months ago, I’ve had some tests done for my adrenal gland so I’m waiting for results. I’ve looked it up but there was just too much info and it sort of looks like we don’t fully understand it.
Anyone had experience with it? How long did it last? How did you ‘cure’ it? How bad was it? I’m at the point where I’m finding it difficult sleeping and sleep doesn’t help me as in I feel just as exhausted going to sleep as I do waking up. I lost all motivation and concentration just before being diagnosed. I did lose appetite for a couple weeks before that but I’m okay now. I’m in the summer holidays now so I’m trying to rest, I’m not going out or anything just resting but it’s driving me nuts. I’m leaving for Aussie on the 7th and its 3 weeks so I’m worried about dealing with the CFS but this is a chance of a lifetime for me so I’m not willing to give it up although people are calling me stupid for going.
Just want any info about CFS whether or not you’ve had it, you’ve known someone who had/has it or you just know about it.
I only drink water so can’t be that, sorry.
Insomnia Stress answers:
I have replied another question you asked about pretty much the same topic. Chronic Fatigue Syndrome is a term invented in 1988 mostly because they think it’s a virus behind it and they wanted to avoid the term postviral fatigue syndrome to include other cases without the virus. CFS is chronic hyperventilation. Unless you correct the underlying cause, which is the overbreathing you will never get better and most likely you ‘ll have it lifetime. Choose what you want. With simple breathing exercises you can feel better in a matter of days and get your life back in only 1-3 months if you stick to them.
Basically CFS is low anaerobic threshold due to depletion of bicarbonate buffer. Resting bicarbonate says nothing and that’s why doctors usually fail to recognise chronic hyperventilation. Best indicators are the Hyperventilation Provocation Test and Nijmegen Questionaire. Measure your own breathing. How many breaths you take every minute and how long can you COMFORTABLY hold your breath? If you have CFS it’s usually less than 30s. You should increase it to more than 40. Try either Buteyko or the Papworth Method.
You ‘d better read the book Behavioral and Psychological Approaches to Breathing Disorders. It explains anything you currently experience. Read the document “Is chronic fatigue syndrome synonymous with effort syndrome?” Message me if you want more info. Good luck xx
What is Chronic Fatigue Syndrome (CFS)? And is its cause known?
Insomnia Stress answers:
What is chronic fatigue syndrome (CFS)?
Chronic fatigue syndrome, sometimes called CFS, is a condition that makes you feel so tired that you can’t do all of your normal, daily activities. There are other symptoms too, but being very tired for at least 6 months is the main one.
Many people improve in a year or two and do not have a relapse. Some people continue to have severe fatigue and other symptoms for many years.
The disease is not well understood. Most experts now believe that it is a separate illness with its own set of symptoms. But some doctors do not believe this.
There are no tests for CFS. Because of this, many people have trouble accepting their disease or getting their friends and family to do so. Having people who believe your diagnosis and support you is very important. Having a doctor you can trust is critical.
Your tiredness is real. It’s not “in your head.” It is your body’s reaction to a combination of emotional and physical factors.
What causes CFS?
Doctors don’t know what causes CFS. Sometimes it begins after an illness like the flu, but there is no proof of any connection. It’s likely that a number of factors or triggers come together to cause CFS.
Chronic fatigues syndrom?
I’m tired ALL the time. physically exhausted. doesn’t matter how much I sleep or how little I sleep. ALWAYS tired.
I’ve been to the doctor and been tested for thyroid disorders.
Doctor asked if I was depressed. I’m not, in fact very happy except for the constantly tired thing. The only thing I found is on Web MD.
Chronic fatigue Syndrome caffeine withdraws, and some other junk. The one that sounded pretty close was the CFS. Didn’t give me to much help though. how do I know for sure if Its Chronic Fatigue Syndrome and not something else escaping my doctor?
and if it is, how do I get rid of it so I can be a normal person again?
Theres got to be something out there that has worked for someone with CFS.
Insomnia Stress answers:
Chronic Fatigue Syndrome (CFS) is called a syndrome because nobody knows why it happens or what causes it, which makes it hard to diagnose. Basically the way you diagnose a syndrome of any kind is by ruling out all other diagnosable possibilities, which leaves you with the “invisible” syndromes that have no physical markers but are very real. There is no blood marker for CFS, nothing that will come up on an MRI, no test for it of any kind, which means you have to “pass” all of the other tests your doctor gives you.
When you got your blood test, did they JUST test your thyroid or did they take a complete blood count (CBC w/ differential) also? They most likely also took a CBC, which measures your platelets, red and white blood cell counts, etc. One of the other things a CBC measures is iron, which is why I ask. Is it possible that you are iron-deficient? Iron-deficiency anemia makes people tire very easily because the red blood cells are less able to transport oxygen when they are depleted of iron.
I’m assuming that you have a follow-up appointment scheduled with your doctor. If you don’t, make one. Doctors will sometimes brush off patients who have vague, unimpressive symptoms like “I’m tired all the time” because they don’t signify anything particularly serious, so the doctor assumes you just aren’t getting enough sleep and will be fine. Tell them that you’ve been doing some reading and you feel like your symptoms match those of CFS, and ask them what they think of that. Press them to make a diagnosis, or to run more tests until they do.
Don’t let them toss you aside because your fatigue isn’t a red flag to them – living with daily fatigue is a nightmare, I spent 2 months sleeping 10+ hours a day and still barely able to make it through the day because I had a stomach ulcer and the blood loss was causing low-grade anemia. Even then, because I wasn’t vomiting blood I wasn’t a “priority” and had to wait six weeks to be seen by a gastroenterologist. You have to advocate for yourself!
As far as treatment for CFS, most doctors will tell you there’s not much they can do for you. I know a man who struggled with CFS for years, then finally decided to give acupuncture a try. He has been free of fatigue for the past four years and feels great. Most doctors won’t recommend acupuncture because it isn’t part of what they learn in their western-style medical school, but acupuncture works for a lot of people. Even if your doctor hasn’t diagnosed you with CFS, I would still suggest you find an acupuncturist in your area and make an appointment. It can’t hurt any, and it might give you a lot of relief.
Chronic fatigue syndrome?
How is CFS diagnosed? Are there any specific exams/ analysis?
I don’t believe that I have CFS but I do have this constant fatigue that doesn’t seem to get away. I think the doctor will just say it’s plain tiredness due to too much work…
Insomnia Stress answers:
The Centers for Disease Control (CDC) has established certain criteria for diagnosing CFS:
1. Fatigue that is persistent, relapsing or debilitating; does not improve with bed rest; and reduces or impairs average daily activity level by more than 50 percent for a period of at least 6 months. Patient has no previous history of fatigue.
2. The patient has 4 or more of the following symptoms, which must have persisted or recurred during 6 or more consecutive months and not predated the fatigue:
# Short-term memory or concentration problems
# Sore throat
# Multi-joint pain without joint swelling or redness
# Muscle pain
# Headaches of a new type, pattern or severity
# Non-refreshing sleep
# Post-exertional malaise lasting more than 24 hours
In addition, a number of minor symptoms may also appear:
# Poor sleep
# Brain fog
# Increased thirst
# Bowel disorders
# Recurrent infections
# Exhausting after minimal exertion
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