Chronic fatigue syndrome

jumbo747jet

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Anybody familiar with the condition called chronic fatigue syndrome and with treatments, supplements and so on which have proven to be effective in the management of this condition ?
 

jumbo747jet

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No, chronic fatigue syndrome is not the same as fibromyalgia although several similarities. It's often known either as CFS or ME
 

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I could speak a little on Epstein/Barr if that is the same diagnosis you are concerned with. Let me know.
 

jumbo747jet

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I could speak a little on Epstein/Barr if that is the same diagnosis you are concerned with. Let me know.

There are theories saying that the Epstein/Barr virus can cause CFS but so far I haven't seen any scientific evidence of it.
My question is more to do with treatments, supplements and so on though, so if you have anything to share on that, I will appreciate it.
 

pym

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Thats the problem......there are several conflicting "theories" on what is the root cause of CFS. Mononucleosis, Epstien/Barr and such. Each has specific avenues of treatment regimens.
There are several different reasons and diseases that can cause CFS symptomologies.
I lost an Aunt in the 80's from Cancer. Her original diagnosis was Epstien/Barr{as diagnosed by Dr. Barr himself}.....Which commonly is said to be a precursor to various cancers. And she did end up with Lung cancer....which Metastisized into Brain cancer.
I would be very concerned to isolate what the root cause of the CFS is.{virus type}?
It would seem to be Viral in nature. Thus a difficult thing to advise on.
I would think keeping the immune system boosted as best as one can, would be the best course of action. Perhaps HIV type immune system boosting regimens would be something to research.
Best of luck.
 
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Yep - had it on and off for about 15 years (doesn't always last that long tho).

Various ways of treating it. There's no specific 'cure' although there are ways of treating and managing it.

ME/CFS is usually caught by highly motivated ppl who overdo it all the time, and wear themselves down. To recover, it's a case of stabilising yourself (at a lower level of activity than you'd like usually!) then gradually pacing up as you recover. Also avoiding slipping into overdoing things again.

The newest and seemingly fastest and most effective is the 'lightning process' where about 85% of ppl quickly recover enough to lead normal lives. It's an instruction course showing you how to handle it so your body is flooded with endorphins instead of adrenaline (which causes high enxiety etc) to help your body recover. There are quite a few specially trained ppl who teach this (in the UK and maybe elsewhere). As it's expensive tho (£500+) its worth looking into first. There's a book you can get on it, from the Phil Parker LP website.

The other more traditional way is to learn how to manage it by working out accurately what your average level of activity is - stick to it carefully until your body gets used to it - then gradually increase it step by step. Takes 6months+ tho. Been following a book on it myself ('Overcoming CFS' by Mary Burgess/Trudie Chalder) a bit at a time for about a year or so.
This is the way i've been using with a fair bit of success. Thinking of taking the LP course tho in a year or so, just to add to it.

Good luck to whoever you know who's suffering from it. It's difficult to deal with but can be managed so you feel well again. :)
 

Deno

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Could be depression or an anxiety issue, Depression can cause sever physical pain as well as fatigue. Do more, get out more. There is a certain amount of depression related to the winter months. Have you actually been diagnosed with CFS. It seems more like an generic term then an actual diagnosis.
 
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Could be depression or an anxiety issue, Depression can cause sever physical pain as well as fatigue. Do more, get out more. There is a certain amount of depression related to the winter months. Have you actually been diagnosed with CFS. It seems more like an generic term then an actual diagnosis.

Depression is a part of it sometimes - and antidepressants can be helpful with a lot of people - by making you feel more positive so you can gradually build yourself up again. It's a complicated issue though, and depression is usually only a part of it. There's usually other things going on that can be tackled also.
 

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Hey Jumbo,

When I taught public school, I had a student whose mother was diagnosised with this disease. I do not know a lot about it, however, I have kept ties with the student and her family. I will see if I can get any information on how Sandra was treated.

YAG
 

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It is likely that this is a side-effect of fibromyalgia.
Look up Dr St Amand in Los Angeles and his treatment for fibromyalgia with Guaifenesin. It is a long slow process but after 4 years it has worked for me.
 

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Anybody familiar with the condition called chronic fatigue syndrome and with treatments, supplements and so on which have proven to be effective in the management of this condition ?
They list a variety of treatments on the CDC - Center for Disease Control site.


Is that the same as Epstien-Barr syndrom?
I think Epstein-Barr evolved into CFS in the states.

Could be depression or an anxiety issue, Depression can cause sever physical pain as well as fatigue. Do more, get out more. There is a certain amount of depression related to the winter months. Have you actually been diagnosed with CFS. It seems more like an generic term then an actual diagnosis.
Beep, wrong answer. Twenty years ago that was the thinking. CFS is a legitimate disease which unfortunately affects millions worlwide.

I have lazy syndrome. :biggrin1:
That's not appreciated. You really could have kept that negativity to yourself, as it also shows your ignorance. I know people that have suffered with CFS, E-BS, and fibromyalgia. A friend of my ex-bf's career was ruined by CFS he was forced to retire from the FBI at the age of 33 and had to go on disability. He was not a lazy man. :mad:

It is likely that this is a side-effect of fibromyalgia.
Look up Dr St Amand in Los Angeles and his treatment for fibromyalgia with Guaifenesin. It is a long slow process but after 4 years it has worked for me.
Guaifenesin? Really? No wonder it's a slow process, that's a decongestant. My doc used to prescribe it for me every time I got bronchitis. It's now sold over-the-counter as Mucinex in the USA.
 

naughty

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They list a variety of treatments on the CDC - Center for Disease Control site.



I think Epstein-Barr evolved into CFS in the states.


One of our former members Dr Rock suffered mightily from Epstein Barr.
Beep, wrong answer. Twenty years ago that was the thinking. CFS is a legitimate disease which unfortunately affects millions worlwide.

Very true. Unfortunately there are still insurance companies which want to view all of the above related disorders as if they are psycho somatic . The fact that so many women suffer from them doesnt help that issue.



That's not appreciated. You really could have kept that negativity to yourself, as it also shows your ignorance. I know people that have suffered with CFS, E-BS, and fibromyalgia. A friend of my ex-bf's career was ruined by CFS he was forced to retire from the FBI at the age of 33 and had to go on disability. He was not a lazy man. :mad:[/FONT

Yes, I have heard of a number of people who have been forced to go on disability because of these disorders.


Guaifenesin? Really? No wonder it's a slow process, that's a decongestant. My doc used to prescribe it for me every time I got bronchitis. It's now sold over-the-counter as Mucinex in the USA.


I have a feeling that my having to take Guafenesin for my asthma has lessened the effects of my own bouts with Fibromyalgia. That is a blessing considering I am a caretaker of an elder parent as you are, NJ and work full time. I still do at certain times however feel as if someone beat me all over with a baseball bat, but I have to keep moving so I guess Guaifenesin is a God send in disguise.
 

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It is interesting that someone mentioned Mono. Before my doctor diagnosed me with fibromyalgia I had been dragging around with bone deep fatigue. most of the respiratory issues that accompany Mono were not present because of my asthma meds but it wasnt until after I had dealt with this for 6 months that my doctor said I probably had been walking around with Mono for all that time but it was masked by the meds I was taking for Asthma. I wonder if there is a link between some of the more chronic disorders like CFS and Fibromyalgia and Mono. Or if Moni kicks the others into full time residence.
 

B_Hickboy

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I was diagnosed with it, but later found out that it was my thyroid. The symptoms re nearly identical, with a few extras thrown into hypothyroidism, like joint aches and vision problems. I've had the symptoms off and on since 1968 and wasn't diagnosed until 1995. Have you had your thyroid tested?
 

Dave NoCal

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I have known of people who were diagnosed with CFS (and/or fibromialgia and o/or MS) and subequently with Lyme disease (Borreliosis in Europe). I have Lyme and and have sore muscles, fatigue, neuropathies, and used to have lots of cognitive symptoms blah, blah, blah......
There is lots of really nasty controversy regarding this diagnosis and recently the Infectious Disease Society of America (IDSA) was sued by the Attorney General of CT resulting in a settlement which included a complete review of the IDSA's diagnosis and treatment guidelines.
If anyone wants to know more about any of this, let me know.
Dave
 

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Anybody familiar with the condition called chronic fatigue syndrome and with treatments, supplements and so on which have proven to be effective in the management of this condition ?

Despite visits to several doctors, I never got a clear answer to my questions about CFS or Eppstein-Barr or mono or whatever other name the illness might have.

I only know that at about age 25 I went through periods of severe fatigue that sometimes put me in bed to recover after even mild physical exertions. It wasn't continuous fatigue but it was frequent and it often intensified following bicycle rides or skiing or hiking or such.

The fatigue would come on with heart palpitations, cold sweats, headaches, and painful muscle aches that roved to various parts of my body seemingly at will. Yes, even my sexual interest and performance declined.

This all went on frequently for about 7 months before gradually subsiding. I had a brief recurrence a few years later but it hasn't returned since.