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Fibro Fog (gish) Print E-mail
Written by Yvette - Pandora   

 

There is apparently a very big difference between long- and short-term memory. Fibro fog seems to eliminate short-term memory almost entirely while sparing long-term memory. This sounds like a description of Alzheimer’s, but it happens to many of us with fibro, whether we are 20 or 80 years old. Those around you would probably be happier if you remember where you are supposed to be as opposed to remembering the name of your kindergarten teacher. 

I can remember facts I learned in elementary school, such as no one wants two deserts, but lots of folks would go for two desserts. Chocolate wins over sand every time! I remember that a preposition is anything a squirrel can do to a tree, well, almost anything.

ImageYet I can’t remember whether I took my meds, even though I am standing over them and perhaps took them 20 seconds before. I finally bought a large daily medication holder, which took care of that potentially dangerous form of short-term memory lapse, although I am positive I took my night meds twice one evening, and I did not expect to awaken the next morning. It takes a lot to get me through the night. I have yet to ask my husband to hit me over the head with a baseball bat, so I take two pills, which sometimes actually put me to sleep. 

I remember conversations I had in elementary school too. I remember the 5th grade square dance (I grew up in Texas). None of the boys asked me to go, and I was feeling pretty bad until a red-headed, freckled-face small guy finally asked. His name was ???? My long-term memory is not that good! I do recall thinking that someday I would be beautiful and desirable, and I would find that boy. Oh my--I just remembered his name! It was Greg Abbott. Amazing!  

The mother of the groom has fibro! When my son got married earlier this year, I totally forgot I had fibro, running on adrenaline, nerves, and excitement. I forgot where the reception was after the ceremony. I had gone to my hotel room to freshen up and didn’t know where to go next! I rummaged around the room looking for the invitation and came upon the yarmulkes I had purchased and had personalized at the request of my son; I forgot to take them to the ceremony! I finally learned where the reception was, and when I saw the crowd at the elevator, I once again forgot I had fibro and ran up nine flights of stairs! I paid for this mistake and many others that night and spent almost 2 weeks in bed when I got back to Florida from California. It was definitely worth it!! 

ImageI recently renewed a very close high school friendship, and Susan could not believe that I remembered my one criminal act, with her as my partner in crime. Preparing for a dance, we went to Woolworth's--remember that store?--and discovered we did not have money for more than one package of tissue paper. I looked around and stealthily, carefully pushed one package into another.

Our life as criminals was short-lived, however, when one of us had a conscience flare-up, and we returned the extra package to the store. She has absolutely no recollection of our brief stint with the darker side, but she can remember where she puts her keys, her purse, and her dog. 

I think the hardest part of fibro fog is losing words. Attempting to have a serious conversation can be dreadfully embarrassing. I’ve learned to talk slower in order to give myself more time to reach into the depths of the clouds in my brain to even remember what I was talking about. I am, however, more successful than our president, George W., who recently announced that he was an “ecelectic reader.”

 

 
 
The TOUCHY subject - is it CFS ? Print E-mail
Written by Carla   

 

All CFS patients hear is that the disease does not exist. Well, that and that if they still feel there is something wrong with them, that it has to be in their heads.  Researchers are globally competing to find the source of the problem and theories vary greatly.

ImageWhat I find remarkable is how patients that get severely ill are ultimately developing symptoms of an auto immune illness, have zero tolerance to substances, lose or gain weight like crazy, are getting crazy, anxious, depressed and sometimes even suicidal. 

When a patient can no longer think for himself, is he still imagining he is ill ? If so, then why don’t doctors protect us by prescribing medication that prevents ourselves from thinking we are ill…. Well, some doctors have actually, they prescribe anti depressants, anti psychotics or sedative medication. Unfortunately, in all the years I have been ‘around’ I have not heard one person that went from CFS state to Cured state on those type of drugs.  

The latest shout from the European continent is that “It’s all in our intestines”, well… if that were true, yours truly would have been long cured ! I have been symptom free a number of times, but the minute I start eating ‘healthy’, do the probiotic thing etc, I get even worse then I was before. Heck, the healthier I live, the more ill I get. I seem to do best when I eat as little as possible, take antibiotics daily and keep smoking like a chimney. 

Some patients improve on the illustrious "MP" but the information surrounding it is poor and the whole theory looks a bit wobbly to me. It definately needs more public exposure. And what about avoiding daylight and vitamin D... you sure you want to try that for 3 years and discover it is not what you needed? How do we know if it's for us if we've got to find the practicing physicians with a microscope? Shoot, if we had such a device and actually knew how to operate it, we might not even need a doctor.

Or is it a mitochondrial disease? Is it in our heart? Well… that’s a difficult one for laymen to answer, maybe that’s why this theory arose, to throw everyone of guard.  

ImageSo, I guess it’s safe to say that the theories fit certain subgroups of patients and success rates vary from mild improvement to remission. However, there are still a large number of patients that do not respond to any theory of the great scientists at all. 

In CFS the symptoms mimic those of various serious illnesses; however when we get tested for them the results are (usually) negative. It is also the magnitude of symptoms that leave doctors baffled and afraid to "touch" anything, for it might break. When the obvious is excluded it has to be CFS. In some countries that may mean that you get disability reimbursement, support and medication, but in Holland, the UK and most European countries that means Cognitive Behavioural Therapy…  

In the light of RESULTS, I find that the most interesting cases of remission appear when someone appears to have something else then CFS, is diagnosed, receives treatment and manages to stabilize or improve. Listen people…. If it has 4 legs and you can ride on it, it doesn’t necessarily have to be a horse !!   

If your doctor does not see the trees in the forest for what they are anymore, please go and give them a hand. Write a log, write down how you react to food, medication, supplements, environmental issues and stress. Everything is a clue, whether it is improvement or a bad reaction. Do your homework, learn how the body is supposed to work and where it goes wrong in yours. If doctors have no answer, you will…. We’ve just gotta try and dig it up.

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Because.... what if you are waiting for the discovery of markers and the cure for CFS and it turns out you don't have it......

 

Take charge of your progress now. Everyday you delay taking action your body suffers more.
 
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