Cured Myself After 4 Years of CFS

[SOC]

So you would rather me say chronic fatigue syndrome than chronic fatigue? AKA CFS? lol
I mean I'll say whatever makes you guys' hearts go pitty pat. As long as you know what I am referring to that's all I care about - but if you would rather me say chronic fatigue syndrome than chronic fatigue that's fine with me.

I think we don't know what you're talking about. I'm not sure you know what you're talking about. That's the problem.

You seem to be referring to chronic fatigue, which a symptom of many conditions -- cancer, MS, poor nutrition, lack of exercise, etc, etc, etc. Your use of the phrase "chronic fatigue" (the symptom) suggests you are talking about the symptom, not the illness ME/CFS. Also, what you describe is consistent with the symptom chronic fatigue, not the illness ME/CFS. I think you should be able to understand (based on that information) why we don't know what you are talking about when you say "chronic fatigue".

The serious illness ME/CFS is a different thing entirely from the symptom chronic fatigue.
See here:
http://www.research1st.com/2011/07/25/me-case-definition/
http://www.research1st.com/wp-content/uploads/2011/07/Carruthers-JIM-Table-1.pdf

Patients with the illness we are discussing on this forum have as a minimum:
1) Post-exertional neuroimmune exhaustion (PENE)

1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.”​

2) At least 3 neurological symptoms from 3 of 4 categories

1. Neurocognitive impairment
a. Difficulty processing information: slowed thought, impaired concentration
b. Short-term memory loss
2. Pain
a. Headaches
b. Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is non-inflammatory in nature and often migrates.
3. Sleep disturbance
4. Neurosensory, perceptual and motor disurbances
a. Neurosensory and perceptual
b. Motor​

3) At least 3 immunological symptoms from 3 of 5 categories

1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion
2. Susceptibility to viral infections with prolonged recovery periods
3. Gastointestinal tract
4. Genitoruinary
5. Sensitivities to food, medications, odours or chemicals​

4) At least 1 energy production/transport symptom

1. Cardiovascular
2. Respiratory
3. Loss of thermostatic stability
4. Intolerance of extremes of temperature​

If your amazing miracle cure (as yet undiscovered by world-renowned specialists) actually cures the symptoms of ME/CFS as described above in even half of the genuine ME/CFS patients, then I'll agree that you are the genius you claim to be. If not, then it's just another of the thousands of bottles of snake oil people have tried to sell us over the years.

 

[justy]

So you would rather me say chronic fatigue syndrome than chronic fatigue? AKA CFS? lol
I mean I'll say whatever makes you guys' hearts go pitty pat. As long as you know what I am referring to that's all I care about - but if you would rather me say chronic fatigue syndrome than chronic fatigue that's fine with me.

The point of the post was to mention some schools of thought when it comes to causes for chronic fatigue. How could that be pointless?

xks - you do seem to have a rather combative style to your posting. I didnt say your post was pointless - i said i didnt know what your point was. I am well aware that these are some of the (rahter simple) theories that have been put forward. What i dont understand was why you posted it - to waht aim?
And yes- it would be nice ot have the disease i have called by the proper name. Thanks, Justy.

 

[CJB]

There is no problem discussing what has helped you and sharing, but we are not treating chronic fatigue here. There are millions of things that cause chronic fatigue including life threatening illnesses.

Most folks in the US are suffering from chronic fatigue resulting from a lack of sleep. Personally, I think that's the main reason the name Chronic Fatigue Syndrome was so insidious. EVERYbody's tired.

Which is why I am posting. @xkx201 I've really, really tried to follow along with what you're saying and you just don't make any sense to me. Sorry. First you're challenging everyone to drink 4 glasses of milk + carbs and when that challenge fell flat, you ignored members pleadings that you educate yourself about this disease. You can start by understanding the name and differentiating it from a very, very common symptom. Please.

Sounds like you've been very sick, but you've found answers to your problems. Lots of people have unexplained illness that is eventually explained and treated and they can be said to have been cured. But I have yet to see you explain why you felt you had CFS and why you feel you're cured - this month?

You seem to be trying to educate? But I can't follow what it is you're trying to educate us about.

Whatever. Thanks for listening and carry on.

 

[CJB]

<snip>

The fact is is that there are so many things going wrong at once that you could easily diagnose the average "chronic fatigue" patient with 10 diseases, so I agree with you that it is much more complex than just unrelenting fatigue. The only way I can even begin to see this disease as treated is to start plugging holes like on a sinking ship.
<snip>

Really?

Most of us spent at least the first four years getting negative test results. Testing positive for HHV6a and EBV and other viruses didn't always cause illness and docs dismissed the results. "Odd" findings in MRIs of the brain were dismissed - in my case at age 40 - as "normal aging". They haven't been able to find ONE disease to treat. Most of us have broken down and cried at least once at yet another "negative" test result. Looking for something treatable is what most of us continue to do year after year and what we hope and pray we'll find. That's the main reason the psychologizing is so devastating. They stop looking.

I beg you to stop telling us what's wrong and start asking questions. If you pose a hypothesis in a post as a question, you'll get lots of good info. I'm giving you the benefit of the doubt and assuming it's feedback that you're after.

 

[xks201]

I would be very curious to see how many of you have had neurotransmitter levels tested.

 

[ukxmrv]

Hi xks201,
I've only had my serotonion level tested (which was within the normal range).

 

[maryb]

Me - all within normal range - still very sick

 

[xks201]

Very interesting. We are all science projects.

 

[taniaaust1]

I would be very curious to see how many of you have had neurotransmitter levels tested.

Ive first got sick 14 years ago and still cant find a doctor who will test my neurotransmitters

 

[xks201]

The test is usually contracted through another company so you'd pay the same price to have it done privately. I think it is around 200$ now most places just do a google search online.

 

[Enid]

Just logged in - cure myself after 4 years ?????????? - oh my Docs would love to hear and then suggest CBT to me.

 

[xks201]

Chronic fatigue syndrome in my opinion and probably everyone here's opinion is a diagnosis made by doctors who are too lazy to investigate further into what is causing the fatigue. Lots of things can cause fatigue.

 

[Googsta]

I am confused by your thoughts on fatigue , do you mean people are diagnosed who do not fit the actual criteria for CFS?
And that you think CFS is a real illness?

Diagnostic criteria has shifted away from Fatigue now to put more emphasis on PEM & other symtoms eg Neurological symptoms.
Fatigue is just the tip of the iceberg.

 

[CJB]

Chronic fatigue syndrome in my opinion and probably everyone here's opinion is a diagnosis made by doctors who are too lazy to investigate further into what is causing the fatigue. Lots of things can cause fatigue.

I've never met a lazy doctor. I've met arrogant, dismissive, misinformed, wrong-headed doctors and doctors with God complexes, but never a lazy one.

CFS is a very unsatisfactory diagnosis because there's no treatment, so I doubt that many of us would accept the diagnosis from any one doctor and just give up looking any further, lazy or otherwise.

It may have once been considered a "trash can" diagnosis, but it was my experience that I had to go through any number of doctors and specialists before I was finally diagnosed, and I don't think I've ever fully accepted it. Most doctors would far prefer to diagnose depression than CFS if they're looking for an easy way out or have run out of things to test for.

It is a legitimate, defined disease with specific criteria for diagnosis, not something doctors generally diagnose because they're lazy. In my own most humble opinion. There has been a lot of abuse of PWCs and suffering caused by ignorance in every area of the medical profession when it comes to this illness, but I haven't seen too much lazy.

I'm sure you'll find some agreement, xks201, but probably not everyone will agree.

 

[Sushi]

Chronic fatigue syndrome in my opinion and probably everyone here's opinion is a diagnosis made by doctors who are too lazy to investigate further into what is causing the fatigue. Lots of things can cause fatigue.

Ahh...I think you might want to reword that bit about "probably everyone here's opinion [that CFS} is a diagnosis made by doctors who are too lazy to investigate further..." This is your opinion--there are thousands of patients who are members here.

One reason that some docs give a diagnosis of CFS is that then they can code it so that insurance will pay--this is being helpful not lazy. They may not understand the whole picture (does anyone??) but many good doctors are being diligent and doing their best.

It is the ones who refuse to consider such a diagnosis that are thorns in our sides. And many doctors only give a diagnosis of ME/CFS after extensive testing to eliminate other possibilities.

Sushi

 

[ukxmrv]

xks201 - were you ever diagnosed with CFS and if so, which criteria was used?

 

[heapsreal]

Ahh...I think you might want to reword that bit about "probably everyone here's opinion [that CFS} is a diagnosis made by doctors who are too lazy to investigate further..." This is your opinion--there are thousands of patients who are members here.

One reason that some docs give a diagnosis of CFS is that then they can code it so that insurance will pay--this is being helpful not lazy. They may not understand the whole picture (does anyone??) but many good doctors are being diligent and doing their best.

It is the ones who refuse to consider such a diagnosis that are thorns in our sides. And many doctors only give a diagnosis of ME/CFS after extensive testing to eliminate other possibilities.

Sushi

Yes its hard to get a cfs diagnosis, most docs would diagnose depression before cfs. I think depression has become abit of a wastepaper basket diagnosis of late( a shame for the people who really do suffer depression), maybe because they can dish out an antidepressant and problem supposedly solved. Many docs wouldnt diagnose cfs as they wouldnt have a clue in how to treat it.

cheers!!!

 

[xks201]

Sushi I was not referring to a doctor diagnosing CFS for insurance purposes. I was referring to the many doctors that will basically tell you you have fatigue and leave it at that without running further tests. The fact is that unless you see a specialist in regards to CFS, not many doctors are going to run the tests we would like ran such as methylation panels, advanced coagulation tests, and even organic acid tests. It takes a special doctor to even agree to run such things, which are most likely going to be done through third party companies.

I'm not here to argue about what an insurance company will pay for. The fact is that most insurance companies will not pay for anything related to CFS. They won't even pay for provigil or nuvigil based on a diagnoses of CFS, unless of course you have cadillac insurance. So as far as insurance companies doing anything in regards to CFS treatment, it has been my experience that they will not cover any of the so called CFS testing or treatments. Maybe you have experienced different.

I have met tons of lazy doctors. I have met doctors that will look at my hormone panel seeing clear deficiencies and not offer treatment until I bring up the fact that I am in the bottom 10% when I should be in the top 10% of the lab result for my age.

I have had to beg and plead just to get basic things tested. These doctors are totally lazy. If they were vigilant and not lazy they would be testing everything under the sun, because there are so many potential causes of fatigue. Either they do not believe their patient is fatigued or they are lazy in my experience. And it is hard to believe that they don't believe their own patient especially when more and more people are complaining of fatigue.

Virtually any illness can produce fatigue theoretically.

 

[taniaaust1]

I have had to beg and plead just to get basic things tested. These doctors are totally lazy. If they were vigilant and not lazy they would be testing everything under the sun, because there are so many potential causes of fatigue. Either they do not believe their patient is fatigued or they are lazy in my experience. And it is hard to believe that they don't believe their own patient especially when more and more people are complaining of fatigue.

Virtually any illness can produce fatigue theoretically.

I do agree with you that there are many lazy and even more naive doctors out there... most doctors cant be bothered researching when a patient comes in with something they dont know much about.

Thou most illnesses produce fatigue... there isnt many illnesses which produce the range of symptoms we get, affecting all our bodies, which are far more then fatigue.

I personally dont understand why you are so focused on just the fatigue of ME when there are so many other symptoms too with this illness.

 

[dsdmom]

Am I the only one who finds it funny that xks201, who supposedly cured themselves of cfs, started another thread asking for help in curing pots? Sorry pal, if you've still got oi, you're not "cured"!!!