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Could I have CFS or CFIDS?

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Old 01-21-2007, 02:40 PM   #1
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Join Date: Nov 2006
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cwjackson HB User
Unhappy Could I have CFS or CFIDS?

For over 3 months I have been suffering from these same symptoms daily. When walking around I get extremely light headed and feel uncoordinated, severe pains in my head, legs hurt and swell, vision seems blurry, heart palpations, variances in blood pressure, sweating when it's cold, swelling of lymphnodes in armpits, strange stomach and bowel habits, and the list goes on. I have been to a neurologist, cardiologist, family dr., had numerous testing done i.e. MRI's, CT's, stress test, blood tests, thyroid, liver, all of which have came back fine. Dr.'s are unable to find out what is going on, I was quoted as being a "medical mystery". My family dr. told me to hit the internet and research anything I could come up with. Anyone have any ideas? I am at wits end, shed some light for me.

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Old 01-21-2007, 03:09 PM   #2
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shelovescliche HB User
Re: Could I have CFS or CFIDS?

It seems possible that you could have CFS. Was there anything that you noticed that might have brought these symptoms on? A virus or infection, an accident or trauma, or did it just come on gradually?

When I was first diagnosed, I'd initially been sick with a virus, but I never got better. They ran every test on me that they could think of, but everything came out normal. Eventually they did diagnose me with CFS, but with fibromyalgia, too.

Several of those symptoms are common with CFS, others aren't so common but definitely not unheard of. And judging by the fact that nothing is showing up in your tests, maybe you should mention CFS to your doctor.

Old 01-22-2007, 03:14 AM   #3
Join Date: Dec 2006
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music12 HB User
Re: Could I have CFS or CFIDS?

There is no specific test to determine if one has CFIDS. What you do is rule out any other possibilities, such as Thyroid problems, Lupus, etc..... which it seems you have already done.

There are doctors who specialize in working with CFIDS patients, although few and far between.

The thought of many these days is that CFIDS is a symptomology of something else and Lyme Disease is very high on the list. Do some research and you will see that it has reached epidemic proportions. You can also visit the Lyme board here for more information and proper testing. There are currently only two reliable labs to test for this in the US - IgeneX and Bowen. If you use any other lab you will be wasting your time and money.

I was diagnosed with CFIDS 15 years ago and only a year ago had proper testing and learned that I have actually had Lyme all these years!

I know how frustrating it is to not be able to link a specific disorder to your symptoms, many of us have been there as well. But persevere and don't let anyone tell you "it's all in your head."

All the best

Last edited by music12; 01-22-2007 at 03:21 AM.

Old 01-23-2007, 04:43 AM   #4
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cwjackson HB User
Re: Could I have CFS or CFIDS?

Thanks for the replies. I have never been tested for Lyme, but heck I'll try anything. I'm only 31 and have never really been "sick". I find it really hard to just make it through the days work, and crash when I get home. My whole life has changed because of this, I am unable to get out and do things with family and friends, I can't even go to the grocery store without getting severly lightheaded and staggering around. The hardest part of all this is the fact that I cannot get any answers about what's wrong with me. My boss tells me if I quit going to the Dr. I'll be better, that they are just putting things in my head to make money from me. It really sucks when people/dr's. act like it is all "in your head", but you know that it isn't. Thanks cwjackson.

Old 01-25-2007, 08:52 AM   #5
Join Date: Apr 2006
Location: Victorville, Ca USA
Posts: 356
Re: Could I have CFS or CFIDS?

Your symptoms sound closer to my story than many others. My lymph nodes swelled and were sore. They actually thought I had lymphoma due to night sweats, low grade fevers and the lymph nodes. All of your symptoms are like mine. The diziness, light headedness, word recall, heart palps, (finally saw cardiologist and dx with mvp) I think this cfids brought that on so you might want to push to get an echocardiogram of your heart. The Topral helped most of the dizziness. This SFIDS does change your life. I hear you.
I am sorry what your boss said. I relate. Even my own husband who sees me struggle and limp. Says if I would stay off of the computer I would be better.
SCREW them!!!! Knowledge is power! If we don't fight for ourselves NO ONE else will.
Keep fighting keep searching.
Learn all you can about cfids. You'll find most of your symptoms including ibs are common.
Good luck and God bless,

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