Chronic Fatigue Syndrome and the Scandal of Medical Ignorance

originally posted by: GaryN
It could well be that there are so many attacks on our bodies from so many different directions that it is a combination of effects,

I think you are right and the reason why I prefer the term chronic fatigue syndrome as opposed to myalgic encephalomyelitis. Many people think the term CFS belittles our illness but I think it describes it very accurately. A syndrome (collection of symptoms where the cause is not known) in which chronic fatigue is the dominant symptom.

Many CFS sufferers question whether we all have the same illness as some improve, some stay static and others deteriorate, whereas some can link this to specific treatment/interventions, others can't.

MSG and Aspartame are often the first things to be eliminated when people attempt to modify their diet in an attempt to optimise their health in the hope that it improves their symptoms.

originally posted by: Bluesma
I am bookmarking this thread.... I am having symptoms that suggest Chronic Fatigue as well as Fibromyalgia , but I am too scared to accept that it is something like that yet. I am still working on tweeking diet and trying different activities to make it better- I hate the idea that I might have something that is so untreatable.

My husband works in the medical world and tells me that doctors even wave certain patients off between themselves as being "Fibros" , meaning basically, without any hope of a clear diagnosis or treatment. "Don't bother".

It all started after I started working in a hospital, and there were two women before me who came down with these symptoms in the past at this job, and had to leave, but are referred to vaguely as if they were just hypochondriacs or something.

I am getting used to constant pain and fatigue at some level, I adapt as it gets worse, and say nothing now. But sometimes I can't sleep at night, and sometimes I run to the bathroom to cry. I pray that it will just get better and I won't end up with something so hopeless!

My thoughts and prayers go out to those who are already at that point.

Many teachers and nurses are struck down with CFS. Some say that this would suggest a viral cause. Insomnia and unrefreshing sleep are very common in CFS. Continuing with normal activity and grinning and bearing it (no pain, no gain) does not actually work with CFS and makes symptoms worse. Rest, and more rest combined with working within your energy envelope is explained very well here

You really need to get yourself checked out first as fatigue is a symptom of many treatable illnesses.

originally posted by: TheCounselor
a reply to: earthblaze
Listening to everyone, I count myself very lucky to have a doctor that believed more in Chronic Fatigue than I did. To be honest, I just recently had to come to the realization that something was wrong, though I was told this since 2002.
I felt I was humoring this doctor with his "Ebstein Barr" and Mycoplasma malarky because He could prescribe with antibiotics that would help.
It keeps coming back though. I keep pushing myself when I'm tired. That could be part of the problem.
At least this doctor I go to has economy in mind, he's never prescribed anything ridiculously expensive.
He feels it's a chronic case of Ebstein Barr, and the level of mycoplasmas in the system, that somehow I can't find off, drains the system. I just can't seem to shake it permanently though.

You are fortunate that you have a sympathetic doctor, many don't. Many doctors don't believe in CFS, others have their own ideas on what causes the syndrome. In the post prior to yours I talked about the detrimental effect of continuing activity when you are tired. The link explains how to work within your available energy using a technique called Pacing. It takes time, patience and a lot of commitment but many, including myself have managed to get some sort of stable functioning back into our lives.

Energy Envelope

Pacing
.Hope you find this helpful

We have talked about nutrition.

What about the mental and emotional affects on fatigue? In an environment with no positive feed back over a long period of time, routine, stress....body starts to shut down in effort to protect itself by cutting off energy to engage. Looks and sounds like a form of depression. Just some thoughts.

a reply to: Logarock

A very valid point. Psychological and emotional issues are known to exacerbate symptoms in many CFS sufferers (it is not only physical factors that use up energy). Depression can co-exist as a separate entity (as in my case) or be part of a reaction/adjustment to debilitating illness. I think the key here is 'motivation'. People with CFS do not lose motivation, they lose energy. People with depression lose motivation and sometimes energy as well. I often read about the resilience of some CFS sufferers in the face of limited energy supplies often due to guilt ie holding down a job as the main wage earner and also bringing up small children. This often leads to the boom and bust scenario which is a vicious cycle.

CF sufferer here too. This is my 9th year after having caught glandular fever at 19 in 2005. I haven't been able to hold down a job since. I luckily have a supportive husband and I am a stay at home mum. Going through a harder time with it at the moment as I'm only 5.5 weeks post c section so the newborn phase has hit me like a ton of bricks. I haven't been formally diagnosed as the drs I've seen here seem to think it's one of those "in your head" illnesses. I have however had tests for things like thyroid problems, diabetes and was monitored during pregnancy and had the work up before pregnancy and all was good so pretty sure it's nothing else.

Am on the mobile at the moment but I'll hop back on in the morning to read through the thread fully.

a reply to: waltwillis

Funny you should mention blood types,what about us RH negatives,are they different, I often wondered.

yeah chronic fatigue is a side effect of a mycoplasmic infection that invades your cells and reprograms the dna, particularly nerve cells and cells involved in the distribution of various hormones. low energy is related to several things, including the inability of specific molecules to cross the cell wall, that are typically used for energy production necessary for repair and whatnot. this mechanism is similar in effect to diabetes 2, where the cells have become resistant to the hormone, insulin. so in a way, chronic fatigue is very much like diabetes. for example:

in diabetes you have low energy
in chronic fatigue you have low energy
in diabetes you have nerve degrade/destruction
in chronic fatigue you have nerve degrade/destruction

i tried a product athletes use to increase energy production, called vanadyl sulfate. this is also suggested for diabetes 2 sufferers. but that stuff just about rocketed me into the next galaxy -- the energy gain was insane. if you have low energy and want to try it, i suggest breaking into smaller portions (or if a capsule, opening the capsule and dividing it's contents into smaller portions) and not the full dosage. but it will alleviate some of your fatigue. be careful. i'm not a doctor so proceed with caution. also note that it may have side effects. for example, if i took one whole pill, i would have severe intestinal cramps within a few hours or even as much as the next day, that lasted till i could get my hands on some gas x. your mileage may vary.

for the nerve damage, i take methyl B-12 and alpha lipoic acid. note that it has to be METHYL B-12. not normal B-12.

A brief overview of the diagnostic criteria for Chronic Fatigue Syndrome (Canadian Guidelines which are favoured by many)

The Canadian Clinical Case Definition is summarized as follows:

1. Post Exertional Malaise and Fatigue 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.

4. Neurological and 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

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.

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.

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 reply to: earthblaze

yeah my first introduction to this was when i went into a full blown coma that the doctors couldn't find the cause for. it was punctuated by a huge increase in estrogen, which eventually caused estrogen-based breast cancer. they were looking for the wrong things, apparently. they said they couldn't isolate a bacteria or virus that might've caused the coma, but that it had all the symptoms of brainstem encephalitis, where an infection had eaten the rubber-like insulative coating off motor nerves in the cerebellum, which then touched each other and short-circuited. when i recovered, i had all the symptoms of chronic fatigue and gulf war syndrome/lymes disease type symptoms.

after years of slowly going down hill, i eventually got my hands on enough documentation to piece it all together. the breast cancer was followed by chemotherapy that immediately gave me type 2 diabetes. it presented like severe fibromyalgia but turned out to be diabetic neuropathy as all the nerves were dying in my extremities. as a result, i researched that as well and found a doctor who was treating children with autism, with the methyl form of b-12. it had the pleasant side effect of curing diabetic neuropathy (both problems (autism and diabetes) lacks the enzyme to break b-12 down into its methyl form,which your nerves use to repair and regenerate).

by this point, i was taking the maximum dosage of tylenol and ibuprofen just to be able to pick things up. the nerve damage from the coma, combined with the damage from the chemotherapy and diabetes, caused it to degrade super fast. within less than 4 days, the methyl b-12 had completely resolved the neuropathy, however, since it's a lack of the enzyme to break down b-12 into its methyl form, you have to keep taking the methyl b-12

a reply to: bkaust

Hi. Currently there is no test for chronic fatigue syndrome so the diagnosis is one of exclusion (of other illnesses). I am lucky as I was diagnosed at 9 months. I have heard of people having to wait 2-3 years for a diagnosis, 9 years is an awfully long time. Have you looked on the CFS/ME Australian Organization website? It may help you to find a local specialist.

Link

originally posted by: earthblaze
a reply to: bkaust

Hi. Currently there is no test for chronic fatigue syndrome so the diagnosis is one of exclusion (of other illnesses). I am lucky as I was diagnosed at 9 months. I have heard of people having to wait 2-3 years for a diagnosis, 9 years is an awfully long time. Have you looked on the CFS/ME Australian Organization website? It may help you to find a local specialist.

Link

yes there is a test. get tested for mycoplasmic infection of the gulf war syndrome variety. i forget the actual name of the type of mycoplasm.. .fermentans maybe? the problem is, even that may be a symptom of an even deeper problem that allowed the infection to become a problem in the first place. this means looking at something that supports the immune system, but not necessarily the immune system itself. for certain one of the things that happens is your pituitary gland starts misbehaving. so target #1 is immune system followed swiftly by target #2, the endocrine system, and then target #3 the nervous system. once it gets to the nervous system, all bets are off, because by reprogramming the nerves to various organs, it can present as a plethora of different conditions.

i'd suggest trying a low yeast diet for several years, to strengthen the gut (warning: gut goes crazy initially without its yeast fix), and also methyl b-12, at the very least, to repair nerve damage. i'm laying odds that this thing is being exacerbated by invader targeting specific enzymes and as a result, hormones.

a reply to: earthblaze

I have never been diagnosed, when I was around 34 after years of fighting panic disorder, I figured it out myself, I haven't been to a doctor for anything in years because I don't have insurance and cant afford it.

I do know I have mitral valve prolapse, which triggers the adrenalin, which triggers the panic attacks.

I think stress certain can be a trigger and years of anxiety attacks could have been that trigger,

Contrary to what one poster thinks this is very real to the people that suffer from it.

and panic disorder is like dying a thousand deaths.

health.howstuffworks.com...

Researchers also look to the neurological functions behind fear and panic attacks to find an explanation. Some believe that when this fear system in the brain is overused -- when it is called into action too intensely or too often -- it becomes excessively sensitive so that only small triggers set it off [source: Bourne]. Others note that when you are tired, your brain produces sodium lactate or carbon dioxide. When sodium lactate or carbon dioxide levels increase, the brain mistakenly believes you are suffocating and sends signals to increase your breathing rate to get more oxygen [source: Encyclopedia of Mental Disorders]. This can trigger a panic attack.

Another theory has to do with the neurotransmitters serotonin and gamma aminobutyric acid (GABA), which play a part in calming the brain [source: Encyclopedia of Mental Disorders]. People who suffer from panic disorder appear to have fewer serotonin receptors than others [source: NIMH]. Medications that increase the supply of serotonin and GABA, which we'll discuss more in the treatment page, prove effective in combating panic disorder.

I find yoga and Tia chi and meditation is helpful.
Always looking for an alternatives because I don't have access to doctors., Will be 64 this month

p.s. since the endocrine and immune system are so closely inter-related, anything that artificially boosts immune function may not be a good idea. for example, echinacea, while fantastic for people without auto immune diseases, (common auto immune disorders are -- hiv, aids, lupus, lymes, cfs, fibromyalgia, gulf war syndrome), if you have an auto immune disorder it will make things worse. for example, if i take echnicea, glands in my armpits, groin area and breast area, will swell up and burst right out of my skin. not a good idea. this is how i know it is 1) linked to your immune system and 2) linked to your endocrine system.

a reply to: Stormdancer777

my sister had really bad panic disorder back when doctors didn't even know such a thing existed. they'd just thwack her out with some demerol and send her home with a bottle of librium. she eventually figured out that wasn't helping and quit taking it. one of things that helped her recover, was to do a sort of 12 step program like they give in Alcoholics Anonymous. the reason being is that you have locked away in your brain, past experiences that were either traumatizing or you were not equipped to forgive. by forgiving others and asking for forgiveness from others, she was able to offload alot of deeply rooted psychological problems that were driving the panic.

she had it real bad too. if you could be afraid of it, she was. riding in cars, elevators, tall buildings, high places, crowded malls, riding in airplanes, bugs, closed in places, wide open places and etc. almost all of that resolved. she also changed her diet and learned to limit what type of stuff she let into her head. for example, dipping yourself in negativity can be very bad if you have a panic disorder. ats may not be the best environs for you.

Can scoliosis cause chronic fatigue syndrome?

I have scoliosis of the spine and its been like this for 15 years.
My sleeping patterns are like insomnia, I feel more refreshed in the afternoon.
some days I really struggle to get out of bed as I get these aches in my muscles.

originally posted by: amraks
Can scoliosis cause chronic fatigue syndrome?

I have scoliosis of the spine and its been like this for 15 years.
My sleeping patterns are like insomnia, I feel more refreshed in the afternoon.
some days I really struggle to get out of bed as I get these aches in my muscles.

anything that effects that much of your nervous system is likely to cause all kinds of odd after effects like insomnia and fatigue. your situation is different, almost entirely, than an invading micro-ogranism, unless it can be proven that a bacteria/virus is causing it. that's a possible area of research but if you've had it for years, i don't know what the recovery period would be for something like bone growth.

a reply to: undo


Yes, I had it really bad too, back thirty years ago it didn't have a name, I couldn't walk out the door, even the phone ringing would trigger it.

One of the things is the stigma attached to it is this shame, coming to terms with accepting it helped with the panic, I no longer am ashamed .

It builds on itself, first it is the panic attack, next come the fear of having the panic attack, which triggers a panic attack.

I am much better now I go out but I have my limits, when the weariness of the CFS gets bad the anxiety is worse, when the anxiety is bad the Chronic fatigue is worse, it is surely hormonal too, releasing all those stress hormones into you system, it is a vicious cycle.

I wouldn't wish it on my worse enemy.

a reply to: Stormdancer777

hmm interesting. when did you get,or first notice, the cfs?

a reply to: undo

I really don't know, but the last few years have been bad.