Help with questions please -

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Regular Member

Date Joined Jan 2008
Total Posts : 121
   Posted 9/22/2008 7:07 PM (GMT -6)   
I posted this on the Fibro board too.

I thought I had Lupus but now I think after talking to my Rheum that I have CFS or Fibromyalgia. It'd been in the back of my mind for ages but I wasn't sure because these are supposed to be 'invisible' diseases. None of my doctors ever suggest them as a possible cause of my illness, just say there's nothing else they can do for me.

My questions are:
What are the main differences between CFS and Fibro?
How are CFS and Fibro treated? I do not want to go on Lyrica (why would I want to add brain fog to my already terrible brain fog? nothnx).
What kind of doctor would be best to oversee treatment of these things? I have an appointment with a neurologist in late Oct. and I'm going to push for a sleep study and a neuro-psych exam to see how bad my brain fog really is.

I want to try to overcome this obstacle on my own. I've been complaining of fatigue for YEARS now and then slowly other symptoms started joining the list: migraines, muscle pain and tenderness, weakness, joint pain etc. It's all rather transient, coming and going.

I feel a little bit ashamed that something no doctor can diagnose is possibly bringing me down like this. I was to the point that I was almost hoping it was Lupus because then it'd be something I could identify and would be recognized by the medical community! That's such a silly thing to say but I have been trying to figure out what is wrong with me for ages. I want a doctor to look at me and say "this is what you have, this is how we can fix it." Ya know? I understand that a 'dx' isn't important, so I want to know how to treat my symptoms. But is this all in my head? All of my symptoms?

I can't deal with the brain dysfunction anymore. It is getting in the way of school and me pursuing my dreams and even nondreams such as getting out of bed every day.
Crohn's (diagnosed in 2006 and currently in remission), severe migraines, Seborrheic Derm., Hemolytic Uremic Syndrome (1994), chronic pain, ulcers/GERD and possibly Lupus. Medications: Nexium, Pentasa, Percocet and Vicodin as needed, Flintstone Vitamins (my favorite part!), calcium and magnesium supplements, vitamin D once weekly. I follow a low fiber, low residue diet.

New Member

Date Joined Sep 2008
Total Posts : 3
   Posted 9/23/2008 5:57 PM (GMT -6)   


I know it is against the rules here to post links here, but I wanted to let you know that there is hope. I know how you feel because I have CFS and was undiagnosed for years. There are various treatment plans for CFS posted online and I would highly recommend doing research to find those treatment plans. I'm aware of at least three physicians who apparently have CFS and have been very involved with this devastating illness and the research and treatments. Those physicians names are Dr. Jacob Teitelbaum, Dr. Garth Nicholson and Dr. Mark Shaw.



Regular Member

Date Joined Jul 2008
Total Posts : 78
   Posted 10/24/2008 1:47 PM (GMT -6)   
Hi - has anyone suggested you have lyme disease and/or possibley another tick borne infection?

Please email to get the name of a lyme literate doctor in your state. - You will not regret seeing one of these specialists. They will help you get your life back. They helped me.
You can also email me with any questions
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