ME (Chronic fatigue syndrome)
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ME (Chronic fatigue syndrome)
Having recently under gone numerous tests it appeats that a diagnosis of ME may be made.
Are there any stimulants that can be taken to enable flying? At the moment it looks like amphetamines which means loss of licence.
Are there any stimulants that can be taken to enable flying? At the moment it looks like amphetamines which means loss of licence.
Psychophysiological entity
Did this follow a virus? If so, disregard.
A little about it a while back.
http://www.pprune.org/forums/showthr...highlight=salt
I happened to see the thing about salt in a European broad sheet. No real science, but so easy to try. A friend's daughter was down to two short days a week at college...sometimes in a wheelchair. She tried salt, and made a steady recovery. Of course, this could have been coincidence, but it was after about 3 years of illness.
Have you tried a brutal illimination of every type of food? One at a time of course! I'm presently going back on bran to aid bowl function, but the first day I'm starting to ache and feel weak.
This will be the third cycle of testing this hypothesis, and so far it's coinciding. Bran seems such a natural food, but if it is the culprit it's so easy to eliminate.
A little about it a while back.
http://www.pprune.org/forums/showthr...highlight=salt
I happened to see the thing about salt in a European broad sheet. No real science, but so easy to try. A friend's daughter was down to two short days a week at college...sometimes in a wheelchair. She tried salt, and made a steady recovery. Of course, this could have been coincidence, but it was after about 3 years of illness.
Have you tried a brutal illimination of every type of food? One at a time of course! I'm presently going back on bran to aid bowl function, but the first day I'm starting to ache and feel weak.
This will be the third cycle of testing this hypothesis, and so far it's coinciding. Bran seems such a natural food, but if it is the culprit it's so easy to eliminate.
Last edited by Loose rivets; 4th Dec 2007 at 02:17.
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I did post a reply but 9 month old son deleted it.
We have radically cut out all lactose, wheat and gluten, and caffeine.
We only have ever eaten organic, and make our own bread.
It has helped a little but not much.
This actually was diagnosed after a virus which had me on 3 ivs and in hospital.
After a MSLT they have discovered that when my body is asleep at night my mind is having many awake periods and body organs resond as if I am awake (yet I look asleep), and during the day I was micro sleeping (even though people were talking to me). I have REM sleep during the micro sleeps!!!
I now have to have a MRI - narcolepsy and sleep apnea ruled out.
We have radically cut out all lactose, wheat and gluten, and caffeine.
We only have ever eaten organic, and make our own bread.
It has helped a little but not much.
This actually was diagnosed after a virus which had me on 3 ivs and in hospital.
After a MSLT they have discovered that when my body is asleep at night my mind is having many awake periods and body organs resond as if I am awake (yet I look asleep), and during the day I was micro sleeping (even though people were talking to me). I have REM sleep during the micro sleeps!!!
I now have to have a MRI - narcolepsy and sleep apnea ruled out.
Psychophysiological entity
It does sound as though you are getting logical treatment at an advanced level. But still bear in mind that perhaps one small factor, like the ingredients of your home made bread, just might make things worse during the period that you have to battle through.
It is only my unqualified opinion, but I think there has to be something wrong before the mind/body reacts to otherwise normal foods. It's almost as though these types of reaction become learned, and all the subsequent problems stem from the mind's perception of danger.
I have a son that publishes on mind / body interactions, but I never quote him for fear of making a mistake in my interpretation of his work. I do however, get to read through numerous books at the heavy end of the science. It's astonishing just how clearly a reaction at cellular level can be seen to change by suggestion alone.
I hope you'll keep us posted on your further diagnostics.
good luck. LR
It is only my unqualified opinion, but I think there has to be something wrong before the mind/body reacts to otherwise normal foods. It's almost as though these types of reaction become learned, and all the subsequent problems stem from the mind's perception of danger.
I have a son that publishes on mind / body interactions, but I never quote him for fear of making a mistake in my interpretation of his work. I do however, get to read through numerous books at the heavy end of the science. It's astonishing just how clearly a reaction at cellular level can be seen to change by suggestion alone.
I hope you'll keep us posted on your further diagnostics.
good luck. LR
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ME is a complex syndrome which is poorly understood. That goes for possible cause, diagnosis and treatment.
Most people agree that a combination of CBT, physiotherapy and antidepressants works best for most folks.
<---any advertisement appearing in this sidebox is there courtesy of PPRuNe and is not an endorsement by me for any product or service.
Most people agree that a combination of CBT, physiotherapy and antidepressants works best for most folks.
<---any advertisement appearing in this sidebox is there courtesy of PPRuNe and is not an endorsement by me for any product or service.
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Well heart tests have come back fine.
Awaiting results of MRI still.
Had an EEG last week and was questioned by the tech as to whether I was on any sleeping medication to which I replied "No". In fact until I know what is going on I am not taking anything - herbal or traditional.
He was then very confused as he told me that my trace was reacting as if I was on a heavy dose of sleeping tablets.
I find this very interesting.
I am also now getting pain in joints and muscles and the occasional muscle spasm. They are considoring Fibro Myalgia as well as ME.
I am of the understanding that work may be thinking I am making this up!!!! The company doctor is in contact and keeps saying "well people do get tired".
For me the best thing to happen is a decision to be made sooner rather than later as I only have 2 months to go until my 6 months is up. What I do not want to have happen is for the company to say" well you might get better so here is some of your insurance money, lets see how you are in another 6 months". This would be a disaster financially as we would be eating up the insurance money just for them to say "oh sorry well we gave you an extra 6 months but you are no better so now you have no job".
I would rather lose the job and be able to get on with my life. It is the not knowing concering health and job that is making this even more depressing and exhausting me even more.
Awaiting results of MRI still.
Had an EEG last week and was questioned by the tech as to whether I was on any sleeping medication to which I replied "No". In fact until I know what is going on I am not taking anything - herbal or traditional.
He was then very confused as he told me that my trace was reacting as if I was on a heavy dose of sleeping tablets.
I find this very interesting.
I am also now getting pain in joints and muscles and the occasional muscle spasm. They are considoring Fibro Myalgia as well as ME.
I am of the understanding that work may be thinking I am making this up!!!! The company doctor is in contact and keeps saying "well people do get tired".
For me the best thing to happen is a decision to be made sooner rather than later as I only have 2 months to go until my 6 months is up. What I do not want to have happen is for the company to say" well you might get better so here is some of your insurance money, lets see how you are in another 6 months". This would be a disaster financially as we would be eating up the insurance money just for them to say "oh sorry well we gave you an extra 6 months but you are no better so now you have no job".
I would rather lose the job and be able to get on with my life. It is the not knowing concering health and job that is making this even more depressing and exhausting me even more.
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A friend of mine was "diagnosed" with chronic fatigue syndrome and spent quite a few years hardly working. Sick of it he went to trade school on weekends for something new to learn , and whilst walking up some stairs carrying some timber got some chest pain and had a near faint.
Paramedics called - ECG done - pt had actually been suffering Wolfe-Parkinson White syndrome. Look it up on Google for a detailed explanation.
He underwent a procedure called an ablation to the area of the cardiac tissue that was causing it and bingo ,problem solved.
Keep pestering your doctors and cardiologist.
Paramedics called - ECG done - pt had actually been suffering Wolfe-Parkinson White syndrome. Look it up on Google for a detailed explanation.
He underwent a procedure called an ablation to the area of the cardiac tissue that was causing it and bingo ,problem solved.
Keep pestering your doctors and cardiologist.
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With regard to stimulants, if it does turn out to be Chronic Fatigue/ME, then these aren't advisable.
They don't actually "give" you energy, they just cause you to utilise your (limited) stored energy, faster. So you may get an immediate boost, but it will inevitably be followed by an energy crash of unpredictable severity/duration. This is not helpful in the working environment, as I found pre-diagnosis, when trying to kickstart my miserable system in the mornings with a triple espresso + four sugars.
I had a course of Occ Therapy from an NHS Chronic Fatigue Unit and they even advise against mild stimulants like caffinated drinks e.g. tea, instant coffee & cola.
If there are more tests outstanding, then I'd wait to see what they come up before making plans. Chronic Fatigue/ME is a diagnosis of elimination, given when all other avenues of investigation have come up blank.
Best of luck to you.
They don't actually "give" you energy, they just cause you to utilise your (limited) stored energy, faster. So you may get an immediate boost, but it will inevitably be followed by an energy crash of unpredictable severity/duration. This is not helpful in the working environment, as I found pre-diagnosis, when trying to kickstart my miserable system in the mornings with a triple espresso + four sugars.
I had a course of Occ Therapy from an NHS Chronic Fatigue Unit and they even advise against mild stimulants like caffinated drinks e.g. tea, instant coffee & cola.
If there are more tests outstanding, then I'd wait to see what they come up before making plans. Chronic Fatigue/ME is a diagnosis of elimination, given when all other avenues of investigation have come up blank.
Best of luck to you.
Psychophysiological entity
Is there any connection to having had a recent vasectomy? I recall noticing some symptoms after mine. My GP said that it was "Inconceivable" but I'm still not so sure about that.
Some years ago, I suffered from the symptoms of chronic fatigue syndrome following a bout of pericarditis. After the usual extensive tests found nothing wrong and people started to suggest that there was nothing wrong I forced myself to return to work (no medical issues for me).
I then had to attend a business meeting in Boston Ma and thought that I could just about cope as, apart form the actual meeting, the trip mostly involved sleeping on aeroplanes or in hotels.
I arrived in Boston late on a hot June evening to find that I had no luggage (gone to Paris) and no hotel (should have been booked for me). All hotels near the airport were full so I went on a little adventure to find a motel and then to organise getting my luggage. Something in me tends to enjoy this sort of challenge and I soon forgot how ill I felt. Strangely I never felt ill again and I have often wondered if adrenalin has any effect on ME.
Apparently there is a thing called "adrenalin loop" which suggests that there is a strong connection between ME and the body response to adrenalin, which can be too high or too low. I don't really understand it but have found some explanation here: http://www.simpsonandfawdry.com/page2.htm
I often jokingly suggest to occasional ME sufferers I meet that a really good fright might cure them. I even offer to take them flying but, as yet, no-one has taken up the offer.
I then had to attend a business meeting in Boston Ma and thought that I could just about cope as, apart form the actual meeting, the trip mostly involved sleeping on aeroplanes or in hotels.
I arrived in Boston late on a hot June evening to find that I had no luggage (gone to Paris) and no hotel (should have been booked for me). All hotels near the airport were full so I went on a little adventure to find a motel and then to organise getting my luggage. Something in me tends to enjoy this sort of challenge and I soon forgot how ill I felt. Strangely I never felt ill again and I have often wondered if adrenalin has any effect on ME.
Apparently there is a thing called "adrenalin loop" which suggests that there is a strong connection between ME and the body response to adrenalin, which can be too high or too low. I don't really understand it but have found some explanation here: http://www.simpsonandfawdry.com/page2.htm
I often jokingly suggest to occasional ME sufferers I meet that a really good fright might cure them. I even offer to take them flying but, as yet, no-one has taken up the offer.
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Was tested for Iron overload ages ago (forgot to say) and that came back clear.
However MRI result has come back and they have discovered a tumour in the rear of my brain. No need to panic apparently despite being told its large. The neurologist will see me in early Jan to decide on course of action.
They are not sure if this is the cause of my problems or we have just stumbled across this by pure chance - and hence may be unrelated.
Time will tell.
However MRI result has come back and they have discovered a tumour in the rear of my brain. No need to panic apparently despite being told its large. The neurologist will see me in early Jan to decide on course of action.
They are not sure if this is the cause of my problems or we have just stumbled across this by pure chance - and hence may be unrelated.
Time will tell.
Psychophysiological entity
I'm really sorry to hear that.
I would guess it's going to be tough over the holidays keeping a smile going, and answering, 'fine' every time folk ask you how you are.
Believe me, I empathize, this will be a Christmas that I won't forget either.
Good luck and keep us informed. LR
I would guess it's going to be tough over the holidays keeping a smile going, and answering, 'fine' every time folk ask you how you are.
Believe me, I empathize, this will be a Christmas that I won't forget either.
Good luck and keep us informed. LR
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Best of luck Tidaldestruction with everything you are going through.
My brother has both a severe case of ME and fibromyalgia. He has been ill for some years now and when he first became ill it is true to say that ME wasn't always accepted as a diagnosis but was seen as a cop out and something not real.
He has been put through some weird and wonderful treatments none of which worked including the "go back to work it is all in your mind" one which set him back very badly.
Lately he has been seen by a consultant who is having great success with seratonin and the gradual increase over a long time method. He has seen improvements although at first he took a step back , it isn't a quick fix by any means but the improvements he has made make my brother feel so much more human.
Tidaldestruction I truly wish you all the luck and hope that the Tumour is successfully removed.
My brother has both a severe case of ME and fibromyalgia. He has been ill for some years now and when he first became ill it is true to say that ME wasn't always accepted as a diagnosis but was seen as a cop out and something not real.
He has been put through some weird and wonderful treatments none of which worked including the "go back to work it is all in your mind" one which set him back very badly.
Lately he has been seen by a consultant who is having great success with seratonin and the gradual increase over a long time method. He has seen improvements although at first he took a step back , it isn't a quick fix by any means but the improvements he has made make my brother feel so much more human.
Tidaldestruction I truly wish you all the luck and hope that the Tumour is successfully removed.
Disclaimer: I don't have ME and I'm not a medic.
But, I have several close friends who do suffer, one keeps trying to be an aviator but the ME prevents it.
There is a new(ish) specialist ME unit at the main hospital in Romford - they got my chum recently back from barely able to move in bed, to fully normal in a matter of a month. Hellishly impressive. It might be worth seeing if you can contact the consultant there.
There are also a couple of support groups around worth talking to.
G
But, I have several close friends who do suffer, one keeps trying to be an aviator but the ME prevents it.
There is a new(ish) specialist ME unit at the main hospital in Romford - they got my chum recently back from barely able to move in bed, to fully normal in a matter of a month. Hellishly impressive. It might be worth seeing if you can contact the consultant there.
There are also a couple of support groups around worth talking to.
G
Psychophysiological entity
That's very interesting, and shows the power of forums like this.
We discovered a Frozen Shoulder Clinic in north London. It typically reduces this miserable condition's time down to 4 months from an almost standard two years.
After I posted, it was surprising how many folk on here had someone they knew with the problem.
We discovered a Frozen Shoulder Clinic in north London. It typically reduces this miserable condition's time down to 4 months from an almost standard two years.
After I posted, it was surprising how many folk on here had someone they knew with the problem.
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I do agree with Flyin'Dutch': "ME is a complex syndrome which is poorly understood. That goes for possible cause, diagnosis and treatment."
More to the point, Chronic Fatigue Syndrome (CFS) is a persistent, long-term tiredness; Myalgic Encephalomyelitis (ME) stands for muscle pains and inflammation of the brain and spinal cord. Not every CFS is due to ME and not all (although most) cases of ME are accompanied by chronic fatigue.
So, before deciding on a treatment you have to figure out what is responsible for your particular case of CFS: it can be virus; depression; PTSD; mental stress. Don't let your GP to fob you off with a few antidepressants and amphetamines, insist on a treatment of the root cause of your problem.
More to the point, Chronic Fatigue Syndrome (CFS) is a persistent, long-term tiredness; Myalgic Encephalomyelitis (ME) stands for muscle pains and inflammation of the brain and spinal cord. Not every CFS is due to ME and not all (although most) cases of ME are accompanied by chronic fatigue.
So, before deciding on a treatment you have to figure out what is responsible for your particular case of CFS: it can be virus; depression; PTSD; mental stress. Don't let your GP to fob you off with a few antidepressants and amphetamines, insist on a treatment of the root cause of your problem.
