Chronic Fatigue Syndrome

[Chris Lawrence]

I am putting this post up to see if there are any other Chronic Fatigue suffers on TV.

I received treatment for a viral infection with the consequence being that I developed CFS. This is a common occurance in the development of CFS in a persons body.

What makes CFS unique is that it is post-exertional fatigue unrelieved by rest and lasting at least 24-hours. Post-exertional malaise and/or fatigue of inappropriate severity can temporarily immobilize me and worsen my symptoms following normal physical or mental activity. It takes me an inordinate amount of time to recover – 24 hours or more.

The biggest misconception is that the type of fatigue it results in is similar to the everyday variety most of people will experience. Anyone who has ever felt tired may believe they can identify with CFS and may think, ‘I often feel exhausted and manage to get on with it’. But the fatigue experienced by a person with CFS is entirely different. For example, it can take CFS sufferer days to recover from a walk around the block.

I cleaned the garage out which took three days to do; the outcome was that this exhaustive process had on my body was to put me in bed for about 3 weeks.

Trouble is, Chronic Fatigue Syndrome (CFS) is difficult to diagnose because the symptoms vary greatly among individuals (except for the overwhelming fatigue). Consequently, many sufferers may find themselves drifting from one specialist to another in search of answers. It took me 15 months to get the diagnosis.

If there are any other suffers of CFS on TV or people who have dealt with the diagnosis how are you handling the disease or dealt with the disease. I am taking vitamins and eating well, but feel that little affect is gained.

I know in mentioning to people that I have CFS, I may get 'well just go for a walk along the beach' or a blank look as to 'what is that'. Honestly I wouldn't want to wish this on any one.

[crazydrummerpauly]

After a major breakdown ( and i use the word very seriously and descriptively, not metaphorically ) in 2004, which was triggered by the onset of chronic tinnitus (still have, always will probably) CFS became a recurrent experience in my own life. I completely identify with your precautionary words to anyone who might get CFS mixed up with normal tiredness - for a genuine CFS-sufferer, simply washing-up can be a daunting challenge, let alone a walk round the block. I read a number of books on the condition over the intervening years, and from memory, only a few ideas stuck in my mind. First, acceptance without reserve - if total rest for an entire year or even more is needed, it is needed, no way round it. Second, building back up to something like normal energy levels involves congratulating oneself on and being happy with the small achievements, like washing-up - whereas most people, especially anyone from a 'work-ethic' cultural background tends to be so hard on themselves for 'shirking'. Third - and this is still something i would like to follow up back in the UK - CFS is highly likely to be connected to the damage done to hormonal processes in the brain by prolonged periods of stress - this really concerns me, because this is not 'psychological' damage, but physical/neural/chemical damage which has a permanent or at least very long-term character. Of course, this is a vast area of medicine which i am not remotely qualified to expound on - and this is not a suitable context - but one area which i became focussed upon is 'ADRENAL FATIGUE' - which one Google result claims 80% of humans may suffer from at some point in their lives ! Basically, the hypothesis is that chronic stress ( not viral infections i realise ) shuts down the adrenal gland and obviously reduces energy and stamina levels markedly, sometimes acutely. There are specialists in this in most countries now - a swift google of AF shows just how many now believe it to be a medical reality and a growing problem. I'm pretty sure i have AF - and there are a couple of simple tests you can try if you'd like to ponder this possibility - one relates to pupil-dilation, and the other to pulse-rate after simple exertion. ( Can be found online of course.) Thanks for the post Chris - it is a very serious area and has been on my mind a lot in recent months. The very best of luck for the future.

[bina]

just a thought. when we work with animals we area aware of two different syndromes: acute stress and chronic stress. animals with fright/flight reactions like gazelles and rabbits die very quickly, from stress. the acute stress causes a series of chemical reactions that in the end cause a kind of muscle atrophy that affects the heart and , as many people say, the animal dies of heart attack from fright.

stress is the main cause of death among wild animals that are wounded and treated in captivity. as we used to say,, the operation/treatent was succesful but the animal up and died. some animals are more sensitive then others to stres syndrome.

other type of stress is chronic stress: overcrowding, poor feeding oppurtunities, bullying by dominant members in a flock, herd. also, poor cageing situations, lighting, temperature, anything that doesnt properly fit the species or specific animal. sometimes, a few months after moving a paticular specimen to a different exhibit, or release, the animal will die. most vets will claim, after doing all the pathology, that the animal died of chronic stress, and when looking back, the chain of cause can be found.

i often mentioned in jest that this must happen with people just we live so long that it takes longer for us to die of chronic stress, but but im sure there is a connection between stress and the hormones that affect us.

look up stress and capture myopothy. applicable to avian, mammal, warm blooded water animals (whales), etc... not sure if applies to humans but not sure that it isnt in some way also...

bina

israel

[BuckarooBanzai]

The most important thing in my mind is to check your heart. If you are fatigued then make sure your heart is not the cause. As much as I love Thailand I do not know if Thailand is the right place for checking this out.

[Chris Lawrence]

Thanks Pauly.

Its hard to get feedback from suffers of CFS, as most suffers don't get out. The other description CFS is given is like having the Flu on a daily basis.

I have been doing some surfing on the net to see the amount of time CFS may affect people. There is such a variance in time but what I can see is that on the mild side it can affect a person for 2-5 years. There are claims by some people that they recover to about 50-70% of their former selves or that CFS continues to affect people for many years.

The Professor I see assures me that there is limited medication that will treat CFS. This medication is usually for the symptoms. Referral was made to the Fatigue Clinic based at the Lifestyle Clinic attached to the University of NSW; here I was introduced to ‘careful attention to the sleep wake cycle- optimising sleep hygiene and sleep/wake cycle and management of mood disorder’. This referral was very useful in the understanding of pacing the limited energy I had in one day as not to exert myself.

The other issue I developed was anxiety during the diagnosis process. This has eased, and as you said there is the need for total acceptance of what you can and can't do. I have had over 2 years off work; even doing the cooking this can be an extreme job.

It is easy to feel like an ‘orphan’ in this process as it is hard to get to people that have the experience to deal with the post treatment problems. This leaves a minefield of potential causes that may exacerbate the problem or make you feel as it is all in your head.

Interesting comments Bina. The other factor that is considered in CFS, is that many suffers set their goals very high with high standards. This with everyday stress are more than likely to play a part in recovery. Although recognised as a health problem, little is known as to the origin and its causes. My specialist has said that I may have had CFS in my body for a long time, with the treatment of the virus I had with strong medicines, causing the onset of CFS.

Its not so much as the heart failing, but the whole body, Buckeroo. I had a stress test and got a clean bill of health for the heart. What CFS does is gets you to look at a number of other possible causes due to the way CFS presents itself in the body.

Thank you for your comments.

[crazydrummerpauly]

Thanks Pauly.

Its hard to get feedback from suffers of CFS, as most suffers don't get out. The other description CFS is given is like having the Flu on a daily basis.

I have been doing some surfing on the net to see the amount of time CFS may affect people. There is such a variance in time but what I can see is that on the mild side it can affect a person for 2-5 years. There are claims by some people that they recover to about 50-70% of their former selves or that CFS continues to affect people for many years.

The Professor I see assures me that there is limited medication that will treat CFS. This medication is usually for the symptoms. Referral was made to the Fatigue Clinic based at the Lifestyle Clinic attached to the University of NSW; here I was introduced to 'careful attention to the sleep wake cycle- optimising sleep hygiene and sleep/wake cycle and management of mood disorder'. This referral was very useful in the understanding of pacing the limited energy I had in one day as not to exert myself.

The other issue I developed was anxiety during the diagnosis process. This has eased, and as you said there is the need for total acceptance of what you can and can't do. I have had over 2 years off work; even doing the cooking this can be an extreme job.

It is easy to feel like an 'orphan' in this process as it is hard to get to people that have the experience to deal with the post treatment problems. This leaves a minefield of potential causes that may exacerbate the problem or make you feel as it is all in your head.

Interesting comments Bina. The other factor that is considered in CFS, is that many suffers set their goals very high with high standards. This with everyday stress are more than likely to play a part in recovery. Although recognised as a health problem, little is known as to the origin and its causes. My specialist has said that I may have had CFS in my body for a long time, with the treatment of the virus I had with strong medicines, causing the onset of CFS.

Its not so much as the heart failing, but the whole body, Buckeroo. I had a stress test and got a clean bill of health for the heart. What CFS does is gets you to look at a number of other possible causes due to the way CFS presents itself in the body.

Thank you for your comments.

Cheers Chris, your post has upset me because it has made me realise how much i have tried to bury and tough-out my own problems, and now they are back to the surface. I relate absolutely to your use of the 'orphan' analogy - i had to go through years of orphan-hood from the medical profession with tinnitus - "Nothing we can do, you'll just have to get used to it". Now, before i offer the link coming up, i know just how many snake-oil salesmen there are on the 'net ( trawling through the mickey-mouse 'cures' for tinnitus plunged me into depression ) - but i just wanted to follow up with the idea of the simple tests that we can all do for Adrenal Fatigue / Insufficiency, so here's one link from a possible hundred -

http://forum.lowcarber.org/showthread.php?t=117152

One of the reasons i became semi-convinced about the worth of the ideas on that kind of blog, is the simple observation that younger or fitter people display dilated pupils when they are happy or excited ( or frightened i guess ), and i noticed years ago that my own pupils had kind of 'died'. The other observation is that after an entire year in bits (2004), requiring psychiatric back-up ( folks scared i would top m'self), and years of anxiety and panic-attacks after that, i have quite simply, never been the same guy again. I have resisted delving deeper and deeper without the support of a trusted medic - but i am very very convinced that damage to the hormonal systems ( cortisol, adrenaline...) can be devastating and what really worries the c--p out of me - is that it is probably not something that always repairs itself. I guess i mean that one might actually 'never be the same again', never. So if there are drug-treatments out there, i'll be looking for them when i decide i'm in the right place with the right medic. It all brings back those 1980s 'Yuppies' in the city who were said to be 'burned out' by 30 years old - maybe they really were, and maybe some still are. To be honest, i'm really scared, for my future, because this aint living, it's marking time. Please keep us up-to-date ?

[jombom]

Some of these conditions can be confused with each other, as the effects are very similar.

You mentioned a viral infection in your OP.

Certain types of viral infections have a long recovery time. I can't remember the name, but it is something like Post- Viral fatigue syndrome.

Typically, it can take 6 months, 1 year, or even 2 years to recover. Overdoing things (excess energy consumption) can leave a person absolutely exhausted. It also delays recovery. You will need to discipline yourself to avoid stress, and excess energy demands.

There was a well known UK athlete who suffered from this type of condition. He recovered eventually. It takes time, and lots of self discipline.

[Old Croc]

Have a blood test and get your iron levels checked.

The first clue I had that something was very wrong with me was the onset of a form of CFS, and eventually I found out I was suffering a genetic condition known as haemachromitosis. (aka Iron Overload)

By the time I was diagnosed and treatment commenced, I had arthritis throughout my body.

Worth checking, no more difficult than testing blood sugar, etc.

[Chris Lawrence]

Thanks Old Croc.

Anyway, I was tested for heart problem, myasthenia gravis a muscle condition, and depression; and finally with the help of my Diabetic Educator a second opinion was organised with Professor at POW Hospital Sydney. From this Prof. I got a referral to see another specialist, Professor Andrew Lloyd. At this point my condition was diagnosed as CFS. This took 15 months to investigate and diagnose. Professor Andrew Lloyd is an infectious diseases physician and immunology researcher. He is the Director of the Infection and Inflammation Research Centre (IIRC) at the University of NSW. I did ask him if he was any good at his work, responding that he was a world leader in this type of diagnosis. I like when your Doctor will back themselves.

I have seen the Prof. a few times now and have complete confidence in him.

I did think lack of iron early on, but my local Doctor ruled this out. Because there are these variables you do get on a merry go-round of tests. What I had to do was eliminate all possibilities.

[Chris Lawrence]

Hi Pauly

Hope I haven't sent you down a road of depression by posting this!

It is a hard condition to understand and just trying to understand how much fuel I may have for a day. Monday woke up after bad nights sleep, and needed to go and look at some parts for the car. Took about 2 hours. After that picked my son up from school and went to the shops to get some food for tea. Cooked, but body started to go about 8.00pm. Slept till the next morning, but woke completely drained. Slept most of Tuesday. Today I feel better.

At the moment, if I can get up and shower, breakfast and take my son to school and then pick him up; I have had a full day. If I can get an extra in during that day, say food shopping I have exceeded a full day. This is how pacing has been explained to me. Not overdoing it and listening to the body. Some days I am lucky to get to the pool, walk about 2 laps, light stretching and spa.

With the anxiety, I found because I did not know what was going on or how to maintain my fuel in the body, I got panic and anxiety attacks leading me to a few days of depression. Tired anti-depressants but I got to many side effects from these drugs. I have had to learn and accept the amount of energy I have in a day. The other problem was not working and becoming more frugal with funds. I now use Bach flower remedies for anxiety; its called Rescue Remedy. This works well for me.

Its a big change in one's life. I have also had to have only the people around me that can understand what effect CFS is having on me. My wife is a great support and without her I think I would really struggle.

As my specialist indicated he was one of the best in the world in treating CFS, I am following his direction. I have asked about other treatments that may boost energy, but he has said they will not fix the problem. He is of the belief that the pacing model is the way to deal with this condition.

Thanks for the heads up on the Adrenal site. I have asked the doc about Humane Growth Hormone and related treatments, but he indicated that they had no place in treating CFS. Yeah it would be great to hear of some elixir to improve my condition. I just keep trying to improve my diet, trying different foods to see if I get improvement. Together with Vit B and ginseng. (There are a number of expensive treatments, but for some of it I think better just put the money straight in the toilet)

Yeah I know what you mean by just marking time, but it wasn't until I started to understand the outcomes and accept the condition, I feel as though I won't let this beat me. I am reminded of the frog stuck in the storks mouth with the frogs hands around the storks neck so the stork can't swallow; with the caption 'Never give up'. The other thing I do is keep the mantra, 'snap out of it'; I know these type of quirky sayings help me a little, as they can help change my mood before I head into the abyss of 3-5 days of feeling sorry for myself/depressive state. These are the things that appear to be working for me.

Pauly, hope you aren't upset for too long; it has been good for my spirits to read your posts. It is like Jombom says, this just takes discipline. The best thing for me was being sent to a Lifestyle Clinic, focusing on what changes I need to make and the acceptance of what fuel I had in my body for the day. This advice also has helped with mood.

And likewise, keep me in touch if you hear of any changes to treatment.

Cheers

Chris

[Hairy]

I had it for a while, triggered by a rather nasty antibiotic-resistant infection that was improperly treated by my (American) doctors.  Despite killing off the infection, for quite some time after that point I still got worse. All that anyone could really tell me was that it was "autoimmune", my immune system going haywire as a result of the long infection.  At its worst, I was able to sit upright for about six hours a day -- not accomplish anything else, just sit up.  My problems eventually mostly went away on their own after about 18 months.  My overall energy levels have never really recovered, but that may just be hitting middle age.

A friend's brother was diagnosed with CFS when he was in high school, with no indication as to what started it off.  It took about four years before he recovered.

There are probably several different underlying causes with similar overall symptoms -- sort of like how "dengue fever" is one of either three or four related viral infections.  It's a "symptomatic diagnosis", not a specific one.

Edited February 23, 2011 by Hairy

[Old Croc]

Thanks Old Croc.

I did think lack of iron early on, but my local Doctor ruled this out. Because there are these variables you do get on a merry go-round of tests. What I had to do was eliminate all possibilities.

Heamachromitosis is not a lack of iron, just the opposite! Your body retains and stores iron in many different organs and you eventually die from the failure of one of these organs - heart, liver, pancreas, etc.

You rust!

[JAS21]

Chris....I haven't read all that has been written above but I know about CFS!!!!!

My wife has had CFS for some six years now. Diagnosed when in the UK. She has never been really really bad, but in the early days couldn't sleep,had headaches, muscle pains, acute tiredness etc.

Has been loads better then relapsed. Now just over on year ago she wasn't that well, had to go back to five thirty minute rest periods each day but wasn't improving much. Now she never rests in the day, plays golf..cannot run, well won't risk it, or do the gym but is so much better. She still has a poor short term memory ( more than when it suits her!), it was brilliant before and of course finds stress a problem.

I couldn't find any doctors here who knew much if anything about CFS. As a last resort I took her to a clinic that someone recommended...an expensive one! The guy treating her did nothing in three months, then we bumped into a guy we had met some three months earlier at...well it doesn't matter where...and he previously told us he had cured CFS patients. So we swapped to him, he did blood tests and found very, well almost nil progesterone and Testosterone levels, low DHEAs, thyroid not good etc.

So she has been on these Thyroid supplements, Testo. and Prog. creams plus, DHEA, CoQ10, Magnesiun, Omega 3, Multi-minerals, Multi Vits, VitC and Amino Acids, also has frequent B1/B6/B12 injections..her bum must be like a pin cushion (Nevramin seems to sort out her headaches) . The Amino Acids certainly have almost cured her muscle problems. Actually she is off thyroid now..we found a Chinese herb supplement that had the same effect on TSH and maintained her FT3 and FT4 levels.

If you want to see this doctor I can give you the info. Normally he only comes to Thailand every couple of months but at present he is here full time for at least one more month. Good Luck..I have PM'd you..I think that this is enough info in an open forum.

[ra1n85]

I came down with mononucleosis (glandular fever) and a shingles infection at the same time last year. Pretty sure I overloaded my nerves with too much work and stress and ended up paying for it. 14 Months later and I'm still not back to my old self - it will take more time. It's been frustrating, extremely painful, and nothing short of life changing.

Although I can't say I've been too affected by the fatigue, I can say that my body is/was messed up. I only wish I could go back in time 16 months and slip myself some eastern European sleeping pills and a week on a quiet beach.

Best thing I can suggest is keep yourself focused on something - work, hobbies, anything.

Rest and not being so hard on myself have helped me out as well.

Best of luck.

[BlackJack]

Disclaimer

I am not a Doctor and do not gain financially from this post

It is from personal experience and I suggest you do your own research DYOR as I did for years

for excessive iron in the blood take IP6 (rice protein for chelating the blood)

for chronic fatique take piracetam and hydergine (both available over the counter in Thailand and so legit pharmaceuticals)

read about it as the initial does of piracetam is quiet high and the hydergine has a synergetic effect.

when you're all better and your brain and body is firing on 200% drop me a line

[Robroy]

I experienced serious (& increasing) fatigue from my teens to about 50: exhaustion, sleeping 12-14 hours a night, brainfog.

I stopped eating grains & sugars in 2000, at age 50 (the version I chose was called 'the Zone Diet'), & the problem evaporated in a week.

Now it only comes back whenever I have a drink of alcohol, or eat more than a couple of mouthfuls of grains.

I based this approach on the fact that we are not a grain-eating species & have had insufficient evolutionary time to adapt to them.

I am sure that this will not explain everyone's CFS (I suspect there are numerous possible causes).

Incidentally, at the same time I suffered from a form of arthritis (spondylitis) which the specialist said would see me in a wheelchair by about 2010. My ESR (blood inflammation reading) was 43. Now it is 1 (the lowest possible score) & I am symptom-free.

If I had paid much attention to doctors in my life, I would not still be around.

[Flatouthruthefog]

The most important thing in my mind is to check your heart. If you are fatigued then make sure your heart is not the cause. As much as I love Thailand I do not know if Thailand is the right place for checking this out.

Yes, checking your heart is always an excellent idea. I'd also add that one of the weaknesses of medical matters here in Thailand is accurate diagnosis.

My message here is purely objective and unqualified (a good UK pass in O-level biology decades ago doesn't count, I think!). I just hope that what I relate is some help to the OP or someone.

In Chiang Mai there is a Swedish man (the nationality is important, bear with me) who suffers from an illness in which he frequently experiences total exhaustion yet can NOT sleep! He tells me that he lies in bed exhausted and awake, and can barely rise occasionally to eat or use the bathroom. He calls these his 'white days' and they are utterly miserable.

The condition began (with no apparent cause) when this man was a driver on Swedish railways. Happily, they had a first class woman doctor who was right up to date with medical info.

At the time (sorry, date unknown), only Sweden and USA recognised that this really was a disease, and not total laziness or a scam. He was given much treatment and advice and early retirement on full pension on medical grounds. He says that this is an incurable brain disease, still not understood or recognised by much of the world, but he has not given it a name. Well, not to me.

His English is almost fluent and he MAY be prepared to help with more info and advice. So PM me GIVING your own e-mail if you feel he might help you.

And good luck!

[Chris Lawrence]

Disclaimer

I am not a Doctor and do not gain financially from this post

It is from personal experience and I suggest you do your own research DYOR as I did for years

for excessive iron in the blood take IP6 (rice protein for chelating the blood)

for chronic fatique take piracetam and hydergine (both available over the counter in Thailand and so legit pharmaceuticals)

read about it as the initial does of piracetam is quiet high and the hydergine has a synergetic effect.

when you're all better and your brain and body is firing on 200% drop me a line

Thanks BJ

I went to my Doctor and asked about the meds you posted. They don't have in OZ; they are referred to as smart drugs, primarily used with people with cognitive loss say after a stroke. They read as interesting meds.

The one thing you get use to is a myriad of tests while waiting for a diagnosis. I have LFT and blood sugars 3-5 mths and check thyriod and other body hormones every 6-12 mths. With this comes testing of such things as iron levels. Must have a good Doctor in this process.

The message with this CFS is under no circumstances over do a fragile regime.

[Chris Lawrence]

Yeah Flatout that was another thing that was on the tick list before I got to the right specialist. I became exhausted just walking.

Trouble is, Chronic Fatigue Syndrome (CFS) is difficult to diagnose because the symptoms vary greatly among individuals (except for the overwhelming fatigue). Consequently, many sufferers may find themselves drifting from one specialist to another in search of answers. Some develop anxiety and depression and end up being treated for a psychiatric disorder rather than a physical illness.

I can relate to your friends condition. Ask him if it is Chronic Fatigue Syndrome.

Robroy were you ever diagnosed with CFS.

One thing that I am doing is putting grains and porridge back into my diet. I don't feel any worse from this. I will see how I go.

Some of my Symptoms over the last 2 years range with the following problems that persist with more than one symptom at times on a daily basis:

1. Fatigue: New onset unexplained, physical and mental fatigue. Inappropriate loss of physical/mental stamina.

2. Post-exertional malaise: A pathological slow recovery after both mental and physical function, 24 hours or longer.

3. Sleep dysfunction: Unrefreshing sleep, changed sleep patterns or quantity

4. Pain: Joint or muscle aches or headaches

5. Neurological-cognitive manifestations, two or more should be present: Short-term memory problems, poor concentration, word-finding difficulties, inability to calculate numbers, disorientation, difficulty with processing information, categorising words and word retrieval, perceptual and sensory changes, inability to comprehend/retain what is read, slurring of speech, vision disturbances (blurring, eye pain), numbness, tingling or burning sensations in the extremities, ringing in the ears, balance problems, muscle weakness, overload phenomena either cognitive, sensory or emotional e.g. photophobia or hypersensitivity to noise, touch or sound, which can lead to crash and/or anxiety

6. Neuro-endocrine: Changes in body temperature, sweating episodes, cold extremities, marked changes in weight or appetite; symptoms worsen with stress.

7. Immune: Tender lymph nodes, sore throat

What makes CFS unique is that it is post-exertional fatigue unrelieved by rest and lasting at least 24-hours. Post-exertional malaise and/or fatigue of inappropriate severity can temporarily immobilize me and worsen my symptoms following normal physical or mental activity. It takes me an inordinate amount of time to recover – 24 hours or more.

[tim armstrong]

Yeah Flatout that was another thing that was on the tick list before I got to the right specialist. I became exhausted just walking.

Trouble is, Chronic Fatigue Syndrome (CFS) is difficult to diagnose because the symptoms vary greatly among individuals (except for the overwhelming fatigue). Consequently, many sufferers may find themselves drifting from one specialist to another in search of answers. Some develop anxiety and depression and end up being treated for a psychiatric disorder rather than a physical illness.

I can relate to your friends condition. Ask him if it is Chronic Fatigue Syndrome.

Robroy were you ever diagnosed with CFS.

Hi Chris,

I've never understood this condition, but I know there are many doubters. You're right about depression and anxiety as many people in the mental health field put it down to that. But without wanting to reinvent the wheel, have you exhausted all the allergy possibilities, - I'm thinking more of seasonal pollens etc. Where I used to live at Alstonville in northern NSW there was a beautiful blue flowering tree called 'Tibochena' which caused no end of problems for many people, in the flowering season. Some even had to move away.

The other one is accidental poisoning,which can be easily verified from a hair sample. When I worked in Oz I had mothers referred to me because they were depressed about their undiagnosed children who were said to have ADHD, CFS and other conditions. Turned out they were chewing things with high concentrations of lead.

Probably you are not doing that, but it sounds like something is being missed to me. Sorry I can't be more useful.

One thing that I am doing is putting grains and porridge back into my diet. I don't feel any worse from this. I will see how I go.

Some of my Symptoms over the last 2 years range with the following problems that persist with more than one symptom at times on a daily basis:

1. Fatigue: New onset unexplained, physical and mental fatigue. Inappropriate loss of physical/mental stamina.

2. Post-exertional malaise: A pathological slow recovery after both mental and physical function, 24 hours or longer.

3. Sleep dysfunction: Unrefreshing sleep, changed sleep patterns or quantity

4. Pain: Joint or muscle aches or headaches

5. Neurological-cognitive manifestations, two or more should be present: Short-term memory problems, poor concentration, word-finding difficulties, inability to calculate numbers, disorientation, difficulty with processing information, categorising words and word retrieval, perceptual and sensory changes, inability to comprehend/retain what is read, slurring of speech, vision disturbances (blurring, eye pain), numbness, tingling or burning sensations in the extremities, ringing in the ears, balance problems, muscle weakness, overload phenomena either cognitive, sensory or emotional e.g. photophobia or hypersensitivity to noise, touch or sound, which can lead to crash and/or anxiety

6. Neuro-endocrine: Changes in body temperature, sweating episodes, cold extremities, marked changes in weight or appetite; symptoms worsen with stress.

7. Immune: Tender lymph nodes, sore throat

What makes CFS unique is that it is post-exertional fatigue unrelieved by rest and lasting at least 24-hours. Post-exertional malaise and/or fatigue of inappropriate severity can temporarily immobilize me and worsen my symptoms following normal physical or mental activity. It takes me an inordinate amount of time to recover 24 hours or more.

Edited March 4, 2011 by bina
took the reply out of the 'nest' quotes