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Regular Member

Date Joined Jun 2012
Total Posts : 66
   Posted 10/3/2012 5:03 PM (GMT -6)   
Hello, normally I hang out on the Lupus forum since I have RA and Lupus. It was brought to my attention that I may have CFS from my rhuemo. Ok, how does one get tested for it and who does the testing? My rhuemo told me my Primary care doc does and my PC said my rhuemo does it. So, I figured why not ask people that actually know...can anyone clear this up for me?
pbjsammich :p
Acid Reflux/GERD

Regular Member

Date Joined Jul 2012
Total Posts : 335
   Posted 10/4/2012 4:29 PM (GMT -6)   
There is no test for CFS, they have to go off your symptoms. You can be tested for the EBV for Lyme disease and for Mono, those are all pre-CFS. Your Dr. are bouncing you back and forth because that's what having this disease is like, they can't say we are crazy or hypochondriacs anymore but since there's no treatment, they treat us like Lepers. Sorry to sound so pessimistic, the symptoms can be treated, or so I've heard, I'm still trying to find a Dr. who doesn't act like I'm contagious.
Fibromyalgia, Chronic Fatigue Syndrome, Brain Tumor 2nd, crainiotomy 2002, radiation 2007, mild scoliosis, carpal tunnel, surgical menopause, 44yrs old and on disability since 2009.

Veteran Member

Date Joined Jun 2008
Total Posts : 731
   Posted 10/5/2012 2:53 AM (GMT -6)   
I was dx'd by a Rheumatologist. My GP knew I had Fibro but wasn't sure what else was going on. CFS is an illness dx'd by exclusion so I am sure you will have more blood work done to rule out anything else. I hope you don't have it because there really isn't anything that can be done for us. They can help with symptoms & try to help us find a better quality of life but that is about it. I hope you find out soon. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Regular Member

Date Joined Aug 2012
Total Posts : 205
   Posted 10/11/2012 2:47 AM (GMT -6)   
Make sure you have the rule out tests .. my Docs never did.
Hanging in there like a monkey on a vine, knowing that through this journey; there is something positive to find.

New Member

Date Joined Nov 2012
Total Posts : 1
   Posted 11/10/2012 5:26 PM (GMT -6)   
I was tested for cfs years ago in the early 90's.  There is a bloodtest if a doctor knows how to read it - most don't.  This is why when alot of people are just "tired" and we ALL know the difference, they self-claim to have cfs. I am one of those cases that really has it and went back to work.  My past doctor, who was also on CNN, would brag to me about that to her patients.  Well, I never wanted to be sick and besides who else was going to support me off of SSI.  I've been back and forth with illness, and after 14 years of "good" health, I am having a serious relapse.
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