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James H
New Member


Date Joined Nov 2004
Total Posts : 1
   Posted 11/19/2004 8:02 PM (GMT -7)   
Hi. I'm very pleased to have found this site. It seems like there's not many of them out there!
 
I was diagnosed with CFS just over a week ago. They think it was caused by Glandula Fever, as my blood tests confirmed that my liver wasn't quite behaving correctly.
 
I can't really believe what's going on - I don't think I really have this, but I suppose I best believe it. I have many of the symptoms of ME (I suppose), but I'm not sure what to do. I have:
 
Loss of short term memory (usually new words, phrases)
Lack of concentration
Problems absorbing information*
Poor sleep quality
Poor temperature control (hot and cold, changing)
Poor appetite
I'm sensitive to sharp sounds, and to wheat (it makes my head itch like crazy)
I get bouts of breathlessness and racing pulse
Mood swings and anxiety
I get headaches, my limbs ache, I get stomach and chest ache
Knees twitching when I walk, eyelids twitch
 
I'm not sure whether I have the illness, or whether I'm just pedantic. I'm doing my GCSE Examinations later this school year, in the UK. I'm going to fall behind with all my work - and now I know why I was getting worse marks in tests - *problems absorbing info.
 
Do people here with ME/CFS think I may have the illness. I don't understand it all, I just feel like I'm being lazy.
 
Thank you for all your time. 
 
 

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 11/20/2004 7:00 PM (GMT -7)   
Hi James,
Welcome to HealingWell and the CFS message board!
I'm sorry to hear you've been feeling so poorly. I've not heard of glandular fever before. But I just looked it up, and it looks like another name for mononucleosis, or what we often call "mono" here.

CFS/ME is often confused with mono. Indeed, it was first believed to be caused by the Epstein-Barr Virus (EBV), which is also associated with mono. However, it was soon proved not to be, after all. It does sound to me, by the symptoms you list, that you might have CFS/ME. And these days, one can depend on one's Dr to make the diagnosis. Back when it was thought to be EBV, most Drs didn't know how to diagnose it. They still are ignorant as ever about treatment, but they can make the diagnosis fairly well!

But if you are unsure, you could get a 2nd opinion....well, I guess I don't know enough about how your medical system works there. But here, if we want more information than our Dr is giving us, we go to another Dr for that Dr's opinion. It's a normal part of our medical system, Drs aren't insulted if their patients want a 2nd opinion, and typically it's done when one is facing surgery. The best 2nd opinion I ever got for CFS was from an Infectious Disease Specialist. We know that CFS is probably not infectious, although there are instances where people in close contact, like 2 or 3 family members, appear to get CFS at the same time. The beauty of the infectious disease specialist is they are the BEST diagnosticians in the entire medical community. By virtue of their specialty, they HAVE to be good diagnosticians. So whatever the outcome, one is better off than before--either one learns one has a bizarre infectious disease, which hopefully can be treated, OR that one definitely has CFS, and can move forward with appropriate treatments, such as they are.

So, I guess that's about all I can say. It does sound like CFS, but you should depend on a Dr's diagnosis, to be sure. Let us know if you have any more questions, we're glad to try to help. Take good care.
Brynn
 
*Co-Moderator for Chronic Pain forums
*Moderator for Chronic Fatigue forums
*Temporary Co-Moderator for Fibromyalgia forums


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 12/5/2004 6:20 PM (GMT -7)   

Hi James, hope you're having a good day.

Congratulations on having the brainpower to surf the web...this is unusual in my experience of ME sufferers. (It sometimes seems like I collect them...my brother-in-law, my sister, a friend of hers, strangers on ferries, most recently a friend of mine who had mono six months ago and is now often ill...)

Having chronic fatigue myself, and having had absolutely no help from the NHS here in Scotland, I can tell you a little about ME/CFS/CFIDS form a British perspective.

It's complicated, which is why I have hesitated to answer.

In short...in the UK there is a disease process which is identified as ME, which pretty much equates to Chronic Fatigue Immune Deficiency Syndrome as it is descibed in the USA. However CFIDS covers a wider range of symptoms which are considered to be a grey area in the UK, including fatigue such as mine which is basically like ME but without opportunistic infections, and which may be caused by another cause other than whatever is at the root of ME. So I have Crohn's Disease and maybe that causes CFIDS in me, but in the UK there is a lot of controversy and things are not so simple. Even now, many GPs do not believe in the existence of ME; some that do, still do not know the appropriate diagnostic procedures, and the water is muddied by the debate about whether all Chronic Fatigue is related to Post Viral Fatigue Syndrome (a UK-only term I think) or whether some or all of these fatigue disorders are psychological in origin. (Try the ME Association for the list of 14 physical diagnostic signs their doctor says can be used as definitive.)

To add to all this, the NHS refuses to fund the ME clinics that various consultants have been running off their own bat, and the ones in Scotland that have not retired are now no longer taking patients. (There were only two that I know of, I hear rumours there may be a young guy in Inverness just starting up.) There used to be an ME Centre in East Kilbride, but I believe it has now closed down, not least due to old-school doctors who saw no need for it.

So in Scotland at least there are no consultants specialising in it, therefore no patients getting diagnosed, therefore no problem visible, therefore no NHS funding....and the patients are generally too ill, or ill-informed, to fight back against the ill-conceived prejudices and studies of poorly-trained doctors.

I have heard rumours of a Harley Street specialist but couldn't find any info on the Net, ditto for Oxford.

(But I'm not bitter eyes - just twisted ! yeah ) To this day, 16 years after I first started suffering from unusual fatigue, I doubt if there is any emphasis put on it in my medical records, never mind an actual diagnosis.

But the good news is, the younger your doctor is, or the less keen on medicine-by-the-book he is, the more likely he is to actually be able and willing to help you.

As regards your diagnosis, the two things which the MEA doctor seemed to consider the sine qua non of having ME were nerve damage and a higher than normal frequency of opportunistic infections. There is no single definitive test - "diagnosis is by exclusion"  - in other words, the more tests are carried out that rule out other disorders, the more likely it is your diagnosis is accurate.

There is certainly nothing in your list of symptoms which would rule out CFS/ME, and certainly ME quite often presents itself as largely neurological symptoms - the name ME stands for Myalgic Encephalopathy, which basically means "pains caused by a disease of the brain". If you wake up more tired than you went to sleep, feeling like you are running uphill when you are motionless, if you tire more quickly than usual, or your muscles suddenly lose strength...that's not laziness ! 

Predisposing factors are considered to be a very athletic, non-stop lifestyle prior to illness, and higher than usual exposure to antibiotics in the patients medical records. But not having these factors doesn't rule it out. 

The treatments I have seen work all included identifying and avoiding specific foods - food intolerances are to my mind the main clue that you may have ME or something approaching it. Everyone I've ever known with this constellation of symptoms seems to find that changing diet and being careful not to do too much is what really cracks the problem of coping with it. Anti-depressants are also a favourite, as they seem to help alleviate the mental symptoms which so often accompany severe bouts. More recently I've heard that Ritalin is sometimes used  in frequent tiny doses, but I don't know how successful it is.

Hope this helps....don't hesitate to ask if you need to know about coping strategies, diets etc. And please let me know if you find a consultant anywhere in the UK, or any good sources of information...I'm still looking ! yeah yeah yeah

Post Edited (snohare) : 12/5/2004 6:29:50 PM (GMT-7)


Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 1/3/2005 7:35 PM (GMT -7)   
Wow, great info, snohare!
If James has seen this, I'm sure he's appreciative. And it will definitely be helpful for new members. Thanks for caring!
Brynn
 
*Co-Moderator for Chronic Pain forums
*Moderator for Chronic Fatigue forums
*Temporary Co-Moderator for Fibromyalgia forums

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