CFS newbie questions

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New Member

Date Joined Jan 2007
Total Posts : 6
   Posted 1/2/2007 10:00 AM (GMT -6)   
Hi all,

I have a few questions about CFS:

1. Is CFS absolute? Either you have it or you dont? or would there be grades from hardly recognizable at all and upwards to full fledged?

2. Are symptoms constant or do they mostly come in waves across the year?

3. Is CFS contagious in any way other than through the potencial spread of the virus that created the onset in the first place?(in my case, herpes)

4. In what way is HIV worse than CFS? As far as I can understand - In both cases, the immune system is constantly hammered.

5. Does it help in any way to visit a doctor? If you read all articles on avoiding stress, smart excersizing, eating correct vitamins and minerals, I dont see what more a doctor can provide....

Happy new year to all!


Regular Member

Date Joined Nov 2006
Total Posts : 51
   Posted 1/3/2007 8:27 AM (GMT -6)   
Hi Karl,

I may not be the best person to answer because I'm not srue if I understand this condition myself :) but I'll try to answer from personal experience.

1. It seems, form what I usually read about CFS, that people get it all of a sudden: they were fine and then they're sick. In my case, I've had it for many years and it has gradually gotten worse. I had symptoms that I can recognize looking back when I was a teenager, and I'm now 42 and too exhausted to do most of what makes up a normal life. So I'd definitely say there's a continuum from well to exhausted.

2. In my case, it gets somewhat better and then worse, in phases that last several weeks or even months, but it never goes away.

3. I don't believe it's contagious. Nor am I aware that it's cause by any virus.

4. HIV is an immune deficiency that leaves a person vulnerable to contracting many diseases, often pneumonia. In my expereince CFS does not result in any immune deficiency. I am not prone to getting sick, I rarely even get a cold.

5. Visiting a doctor can be so frustrating and upsetting that you sometimes feel like you'd be better off without the aggravation, but doctors can give you some useful prescripstions. For instance if you have trouble sleeping you can get Ambien. In my case I've found anti-anxiety medications like Ativan very helpful, but because it's a controlled substance I haven't found a doctor willing to prescribe it in over nine years!

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 1/3/2007 10:17 AM (GMT -6)   
Hi Karl and welcome. Bee gave you some really good answers and I don't have much to add to it. I have both CFS and lupus and although I've had CFS much longer than lupus, I understand it less than I do lupus. I think CFS is hard to understand because there's not a lot out there about it.

CFS can be really hard to diagnose and like Bee said, it can be very frustrating going to doctors who can't figure out what os wrong, and often make you feel like all of your symptoms are in your head. If you do find a good doctor who understand s what is going on, they can be helpful in treatment of symptoms.

As far as symptoms go, mine have fluctuated a lot over the years. I have gone from very little energy and feeling the need to sleep a lot to having my symptoms go into remission for a few years.

You don't have to worry about CFS being contagious. I have a feeling that a bad case of mono is what started my body on the downhill slide. I don't feel like I fully recovered from that and then a few years later I was diagnosed with CFS.

Regarding HIV, I would think that having HIV would be worse than having CFS. Even though the advances in treatment for HIV are great, there is still the potential for HIV to develop into AIDS and become fatal, whereas CFS is not considered an illness that is potentially fatal.

I hope this answers some of your questions. Let us know if you have anymore. Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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New Member

Date Joined Oct 2006
Total Posts : 17
   Posted 1/9/2007 10:18 PM (GMT -6)   
1. cfs varies patient to patient in severity but it is absolute recognizable difference in fatigue, health, stamina, etc. etc. prior to getting ill
2. for me its in waves, although i never feel as i did prior to getting CFS. some of it is not exeeding your limits (ie. physical and mental activities / stress)
3. its not contagious, although not much research has been done to my knowledge on this. but if it were the whole world would be confined to bed by now, so no. many people can link the onset of their CFS to a viral infection, all though this is not true of everyone. it is for me, after mono came CFS.
4. HIV and CFS; different kinds of immune dysfunctioning, different etiology, insurance accepts one and not the other (grr). it hasn't been proven that CFS is absolutely immune related, but i can tell you for a fact that it is. -end of story-
5. it only helps to visit a doctor for CFS if the doctor is knowledgable of CFS to the extent at which they can offer medical advice and support. usually this is limited to alternative medicines and homeopathic/natural health doctors. even in that catagory, your lucky if you find one who is able to and or willing to help you.

very frustrating. well, happy new year and take care
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