Now a part of the pack!!!!!

Hi Mel. I help moderate the lupus forum, but was diagnosed with CFS long before I had symptoms of lupus. It's sad to say that I know way more about lupus than CFS and I have had CFS much longer.

The only advice I have is probably the same advice you get for fibro, which is to pace yourself and listen to your body. The big difference I have read about between fibro and CFS is exercise. I think exercise is encouraged and is good for fibro. WIth CFS exercise is encouraged if your body can tollerate it, but a lot of people with CFS feel worse with exercise, so it's a difficult balance because you want to exercise so you don't have any muscle wasting.

I'm curious how your doctor diagnosed CFS for you. I don't know much about the diagnostic process. THe doctor who diagnosed me in 1991 didn't tell me what he thought I had and I left the appointment with him feeling very discouraged. I was seeing a counselor at the time because I was feeling so discouraged about feeling so tired and sick and having fevers. She got a copy of my medical records and told me that the doctor had diagnosed me with CFS. MY diagnosis came a few years after the medical community first started recognizing and diagnosing CFS. I never had a follow-up with that doctor and didn't think there was much anyone could do for my symptoms. After a few years I pretty much went into remission and had a fairly normal life aside from needing more rest than the average person. about 2 1/2 years ago I got really sick and have a lot of labs and symptoms that indicate lupus, but my rheumy also thinks my CFS is also back in full force.

I have done some reading and I think there are a lot of similarities between fibro & CFS, but there are also differences. I know that some people speculate they are the same illness, but my personal opinion is that there are very real differences between the two.

Anyway, that's my story. Is your doctor going to change anything or add any meds for your treatment?

Take care

I think they generally diagnose these things by eliminating everything else rather than finding a particular thing wrong. The holy grail of these types of illnesses would be some kind of unequivocal somatic indicator, some pathogen the presence of which would indicate that we are sick. I remembe hearing that testing the brain tissuen of ME sufferers post mortem shows specific abnormalities; but as you have to be dead thats not much help.

Unfortunately theres not much money in fatigue so few medical researchers are interested in it.

Tofiga, it sounds like your daughter has had a lot of bloodwork done, but do you know if anyone checked her ANA? A positive ANA can indicate possible autoimmune diseases like lupus. Something is definitely going on with her based on her symptoms. I hope this new doc can help.

Hello Tofiga!!
I've been fighting for 6 years to get some sort of diagnosis from my doctor!!!
Now that I have a new one she's actually doing more work, I never thought I had CFS but
just the Fibro.
So I guess to answer the question...6 years.

I'm still goin for more blood work so i'll let you all know how that goes.

Later Days.
Mel

Hippimom,

I had a nice reply all typed up and (BAM!) my whole message deleted!  I don't know what I did.  Anyway....let's see if I can reconstruct what I said.  I am sorry that your son is going through all this and it is a shame that you had to go to another state to find a specialist.  It shouldn't be that way.  From what I understand though, the majority of the medical community doesn't acknowledge CFS.  Do you ever wish he could just be a child and not have to experience all this?  I know I feel that way about my daughter.  With her, I wonder where the starting point was.  She has had so many illnesses, symptoms and tests (both invasive and noninvasive) since she was young.  She has IBS, allergies and asthma, hiatal hernia, esophagitis, ovarian cysts, anemia, fibromyalgia, interstitial cystitis, and then for the last two years she has had intermittent fevers, body aches, chills, sore throat, swollen glands, fatigue.  She goes through these cycles where she gets a viral type illness with those symptoms for about five days and then she gets better except for the body aches and swollen glands.  She had what they thought was mono a couple of years ago but she tested negative. 

I have my long list of questions for the specialist.  I will sure let you know what I find out and you do the same, in regard to your son.