Help with questions please -

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.

Another note is that I have all of the Fibro tender points, especially the ones above the butt on the back. :) Whenever anyone pokes me there at the Rheum office I squeal in pain. What's the significance of this? I know nothing about why it happens.

Hi and welcome!

I found an easy explanation of the differences between Fibro and CFS. Hope this helps!

Chutz

The simplest explanation of the difference between FM and CFS is that with FM, pain is the most predominant symptom, while with CFS, extreme fatigue with is most predominant.
Additional distinct differences include:

* Substance P (a neurotransmitter that transmits pain signals) is elevated in FM but not CFS.
* RNaseL (a cellular antiviral enzyme) is frequently elevated in CFS but not in FM.
* Often CFS will be triggered by a flu-like or infectious illness, while FM is more often triggered by some kind of trauma to the body (i.e., accident, injury, surgery, etc.).

meowese, as you ahve crohn's, never, ever take any NSAID medication! Huge no,no!! Also be careful with Malic acid and megnesium. If I take either one it is literally like swallowing fire or acid. Be very careful here.

There is no shame in fibro. It comes with crohn's. Not every crohnie gets it, but many do.

as Jeannie143 said: "MOST of the problems arise from chronic starvation of the muscle cells". I think that is true of Crohn's patients. We do not absorb the proper vits and minerals from our food. Many times crohnies are malnourished. That is part & parcel of the disease. As I cannot take many of the vits & minerals, I must take the heavy narcotics to be able to work & function. Most vits & mins cause me to flare, or burn my gut terribly. You will ahev days of great weakness and fatigue. This is to be expected.

You can do this!

Thanks everyone!

I am curious if these things can be tested for?

* Substance P (a neurotransmitter that transmits pain signals) is elevated in FM but not CFS.
* RNaseL (a cellular antiviral enzyme) is frequently elevated in CFS but not in FM.


I am not sure if pain or fatigue is a bigger problem for me. I complain of joint pain and discomfort but it's never so bad that I am in severe crippling pain. I'm mostly just very stiff and sometimes cannot straighten my joints after sitting without some discomfort. I have gotten bad pain in my shoulder, hips, and knees, jaw etc but it's never so bad that I cannot function with it. What do you all think? I also always have a certain degree of muscle soreness/tenderness.

Like I said I also have many of the tender points that I have heard are prevalent in Fibro. The worst for me are if you press behind my head at the occipital lobe area or my lower back. Does this also happen with CFS patients?

Actually, they can diagnose fibro with the tender points.  The pain clinic doc I just saw was able to tell alot of the spots that were tender without even asking me.  It was quite interesting.  So don't be ashamed.  This is real and is being recognized more and more by the medical community.  Good luck with finding some answers.

Sue