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birdchic
New Member


Date Joined Apr 2005
Total Posts : 8
   Posted 4/24/2005 2:33 PM (GMT -7)   
Hi all! I've been doing a lot of reading on CFS and I haven't been diagnosed yet. I'm actually going to see an internal specialist next week to find out if he can figure out what's wrong with me (as i've said i've been sick for 10 months and all tests have come back normal). I'm hoping he's dealt with CFS before and can recognize it (i read that internal specialists/generalists are the ones that usually find CFS, not doctors).
I'm just wondering, how curable is CFS? I've read some stories about people going to physio and other treatments and thinking positively and they get better, has this worked for anyone? Does it depend on the severity of the condition for good results or does it purely depend from person to person? anything would be great. thanx!

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 4/25/2005 7:43 PM (GMT -7)   
Hi birdchic,
Welcome to HealingWell and the CFS forum!

To my knowledge, no one has ever been cured of CFS. But until a cause or definitive diagnostic test is discovered or developed, we can't really know for sure. It is true though, that people get better. It tends to be the people who are less severely ill, and for shorter amounts of time, who tend to have significant improvements. And people who are very seriously ill, or for many years, tend not to get much better, or if they do, they only get a little bit better.

I read a research study somewhere, that said how many years and how seriously sick with CFS, and how much better they could get. I don't remember the details, but just in general, it said being mildly sick for up to 2 or 3 years, patients most likely can improve almost completely. And the more seriously they are are sick, the less they improve. And then those who are sick for 6 to 8 years, or more, have the least chance of improving. They might improve a little, but not much. And the worst they are sick, the less they can improve.

And I should probably remind folks that I'm not a professional of any kind. This info is just the best I can remember of a researach study that I read about.

Also, the way most people get better is just to read as much as they can about CFS. They pay close attention to what their own body is telling them, as this is a highly individualized illness. What treatment works for you might not, probably doesn't work for someone else, and what works for someone else, might not work for you. So be guided by your own worst symptoms. Focus on learning what might be causing your worst symptoms, and learn what can be done about it. Then try one thing after the other, until you hit on something that works. Then start on your next worse symptom.

My advise would be if one has only been sick less than 3 years, to put everything else aside right now. Make healing and getting better your only goal for right now. Because you do have the potential to get better. It seems that after 5 years or so, one loses the potential to improve, although that is just my own observation. Then if you do get well, it seems to be fairly permanent. CFS is an illness of relapses and remissions, so you will always be fluctuating -- several months better, several months worse. Or if you really manage to improve a lot, you may have years where you're better, and years when you're worse. But it is possible, in the beginning of the illness, to improve to the point where your relapses never get as bad as in the beginning, and your remissions are much longer.

The other factor to remember, is that sometimes people get so sick that no matter how hard they try, they can't get even a little bit better. So if that happens, don't blame yourself. Just keep doing whatever you can to feel better, but there are cases which are very stubborn, and it's just out of anyone's hands to improve, and also no one's fault.

I SO wish I had better information to share with you. This is a very sad and tragic illness. But research is ongoing! A lot has been learned, and there is plenty of reason to have hope. Take every opportunity to advocate for ourselves -- write your government representatives, I can provide a lot of advocacy info, if anyone is interested.

Best of luck with this. Please feel free to discuss anything here, which you might find helpful or interesting. Take good care :-)
Brynn
 
* Co-Moderator for Chronic Pain forums
* Moderator for Chronic Fatigue forums


birdchic
New Member


Date Joined Apr 2005
Total Posts : 8
   Posted 4/26/2005 2:10 PM (GMT -7)   
Thanks you guys for the info, it's greatly appreciated. I have been doing tons of research, even long before the diagnosis(the last 5 months or so). I knew almost right away that it was probably this (but felt stupid for assuming since i'd been to so many specialists and no one said an anything) it's just so hard to read about everything.

I was talking to my choir director today and she mentioned that i seemed to be tired since grade 10 (3 yrs ago) and that's very true. I was always tired but thought it was because I wasnt sleeping enough. nothing clicked until last year that this isn't normal, when functioning in general became a chore. I've had poor marks for years due to lack of concentration but nothing really clicked until i began developing so many symptoms (or at least noticing them). so it might be possible that i've had this condition for years, maybe less severe, but it seemed to have progressed. Actually, come to think of it I thought it was normal until i developed my sore throat/swollen neck glands 10 months ago, but for 2 months before that I was so tired I stopped wearing makeup and nice clothes, showering daily etc because it was such a chore. Most days i thought i woluld die when I woke up in the morning. I've also had stomach bloating for at least 2 yrs (which i read is a symptom of CFS) and no one found a reason for it. Is is very important to figure out how long I may have had this, or just move on and deal with it now?
Because since I talked to my choir director things have been coming back to me, various symptoms.

One last question... I've noticed and written down 35-40 different symptoms, but some only happen occasionally and some (like severe stomach pain that lasted for 9 days) come and go. Do the symptoms last throughout the illness, generally, or do some come and go like that? thx guys!!!!

birdchic
New Member


Date Joined Apr 2005
Total Posts : 8
   Posted 4/26/2005 6:45 PM (GMT -7)   
I actually got an "unofficaial diagnosis" yesterday. I went to the walk-in and decided to ask him if he knew about CFS and he used to deal with some patients with CFS when he was a family doctor. He told me that I have CFS but can't give me an "official diagnosis" since he doesnt have my file and is not my family doctor or a specialist. But he told me that if the internal medicine specialist i'm going to see next monday doesn't diagnose me to keep looking for a doctor that will...the first question to ask is if they've dealt with patients with CFS, it's the only way to guarantee that they know about it and believe in it.
I've had severe symptoms for the last 10 months, which have progressed in number since. I went through a checklist today online and I have over 80 different symptoms, not all present at the same time of course.

I read online that general/internal medicine specialists are usually the ones that are able to diagnose CFS almost immediately.

Also from what I've read you cannot clinically be diagnosed with CFS as you've only been experiencing symptoms for 3 months. I believe the diagnostic criteria is 6 or more months. Someone correct me if i'm wrong...

A fever, medically, means that you're body is trying to fight something off. A fever for 3 months is definitely not right, but i'm not completely sure if stress would cause a fever or not. I wouldn't think so... hope that helps a bit

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 4/27/2005 2:24 AM (GMT -7)   
Hi mj,
Welcome to HealingWell and the CFS forum!
Yes, theoretically, stress could cause a low-grade fever. And you're right birdchic, the diagnostic criteria for CFS says that you have to have the symptoms for at least 6 months. And I highly recommend consulting an infectious disease specialist, mj. Even though I was diagnosed almost immediately, I didn't believe it. I'm just too much of a scientist, and if there isn't any way to diagnose if for sure, then how can we be sure I have it? But the infectious disease specialist was very good, very thorough, and I truly felt like I had been tested for everything else my symptoms could possibly be. So I think that is a smart move.

Yes, acupuncture can help a fever. But that doesn't mean it will, it's a very individual kind of thing. The problem with CFS and the many related illnesses, is that treatments that help some patients don't help all patients. So you may hear from people swearing by some certain herbal remedies or even medications, which do nothing for you. And you may find things that work like magic for you, but which make others worse. And you may find things that help others that do also help you. So the bottom line is to pay attention to your own body, how it acts and reacts, and focus on finding things that work for you. This is the most important lesson you can learn. Listen to your, YOUR body.

Well, I'm sorry to hear you are struggling with this illness. My best advice is to hit it agressively as soon as you are reasonably sure you have it. And by hitting it agressively, I mean take the time to learn as much as you can about your own unique symptoms. Learn what makes them better and learn what makes them worse. Then start avoiding what makes them worse, and live your life in a way that makes them better. Learn about what other people do about each of your symptoms, and try one thing after the other, until you hit on something that helps. Start with your worst symptom, and when you've found some relief, move on and work on your next worse symptom. Or work on them all at once, just whatever works best for you.

Ok then, I'll stop rambling now. Glad to welcome you aboard. Please feel free to join any discussions which you might find interesting, and just generally make yourself at home :-)
Brynn
 
* Co-Moderator for Chronic Pain forums
* Moderator for Chronic Fatigue forums


Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 4/29/2005 2:48 PM (GMT -7)   
Hi mj,
It would be consistent with CFS to have the pattern of a few good days and a few bad days. As I said, everyone is different. But it is common that we try to fit everything in during the few good days that we have, which then only makes the next few days worse. Yes I'd say that's fairly common.

Regarding the blood tests you listed, they do nothing to diagnose CFS. The cause of CFS is not known, and neither is there any kind of lab test which can diagnose it definitively. It is primarily a diagnosis of exclusion, meaning that the Dr must test you for everything that your symptoms might indicate, and they all have to come up negative. A group of national professionals and researchers have developed what's called "diagnostic criteria", which you can learn more about it at this website: http://www.cdc.gov/ncidod/diseases/cfs

However, there are a few, a very few legitimate physicians, and a whole bunch of others who like the income it gets them, who believe that CFS is absolutely caused by a virus. Among certain groups it is actually a raging controversy. The majority of the medical community have appropriately not adopted a standard practice for treating CFS. The groups which adamantly proclaim a virus or viruses are the cause, base that claim on the work of one researcher, which was done....gosh, in the late 80s or early 90s. There was a book written about it, which goes so far as to call CFS an epidemic (despite that fact that it is probably not contagious), and blames some conspiracy for squashing their evidence. I don't know the details of the book. But I do know that several independant researchers have not been able to replicate the work done by the researcher named in the book, whom the book says discovered the virus or viruses. And that's the pilar by which the practice of medicine is supported, that several independant researchers (labs) must be able to replicate the results of any one researcher (lab), before it is accepted as standard practice. The name of that book, I think, is "Osler's Web". I only mention it since you seem intent on learning the facts, but I don't recommend it as place to learn the true facts, only as a place to learn the NOT true facts (in my opinion).

Anyway, the tests you listed look for evidence of 2 viruses (Epstein-Barr Virus (EBV), which is usually known as "mono" or mononucleosis, in the US, and Cytomegalovirus (CMV). Whether you test positive or negative for them means nothing as far as diagnosing CFS by the diagnostic criteria, which I gave you the link for, above. But the small group of Drs who believe that virus theory might look at positive results as positive for CFS. As I said that theory is not widely accepted by the medical community in the US. (Epstein-Barr is NOT the same as CFS.)

I know how confusing this is going to sound, but again, you seem interested. The majority of valid medical research (that which can be replicated by different labs) does still point to some viral involvement in causing CFS. It just has not been able to figure out exactly how.

Ok so I better stop there, I guess. I hope this hasn't been too confusing, but if so, please feel free to ask me to clarify. Take care.
Brynn
 
* Co-Moderator for Chronic Pain forums
* Moderator for Chronic Fatigue forums

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