Tuesday, June 1, 2010


My ANA test came back negative and the Sed Rate test came back low. I should be relieved and happy - at least that's what my doctor and husband think.

Instead I feel uneasy, and unsure of what's going on with my body AGAIN. Don't get me wrong, I don't want a diagnosis of Lupus, heck I don't want any new diagnosis. However, I also know I continue to decline, continue to have odd symptoms (that could or could not be from CFS), and I'm (in my heart) not sure that there isn't something else going on.

So now, I'm at a crossroad so to speak. Do I just "give up" somewhat and accept the diagnosis of CFS and stop these medical games or do I seek a second opinion to have more bloodwork drawn to rule out other things (I don't even know what at this point).

Part of me feels like maybe I'm grasping at straws. Meanwhile, my husband feels that I can't see the positive in anything - maybe I can't right now.

To recap - current symptoms include (does anyone else notice this list growing/changing):
Extreme Fatigue (unrelieved by rest)
Muscle Aches (daily - pain level has increased throughout the last month)
Joint Pain (especially knees and hips)
Burning Feet
Burning Face
Face, neck and chest rash of unknown cause (the face is classic of a butterfly shape - however the rash is very light - it is sun-sensitive)
Hot and Cold Spells
Dizziness and/or light-headness
Nausea (sometimes severe)
Weight Loss (Still losing - currently at 18 pounds total)
General feeling of being unwell (always as if I'm coming down with something)
Sore Throat
Hoarse Throat (gets worse the more I talk or the more fatigued I get)
Weak legs (especially when I have overdone it)
Concentration Issues
Word "lost" issues
Increased IC symptoms (mainly pain)


  1. Except the rash and weight loss, all are very familiar..although I did lose a lot of weight before actual diagnosis 9/10 years ago..only to put a lot on.

    So sorry you're having a rough time. All the waiting and wondering is very stressful and that's terrible for PWME

  2. Cusp -

    Thanks - I appreciate the feedback. This bouncing around is BAD for ones health. I'm thinking it may be time to accept the fact that we are looking at CFS/ME again.

  3. Yes all the symptoms are familiar and I have to say I felt just like you in the begining ... I didn't want it to be CFS and I was careful to make sure I had all the tests I could in case there was something else. It's god to really know for sure! I saw a rhuemotologist to test for Lupus, and Endocronologist to test for Addisons and and thyroid or addrenal issues and an Immunologist for any blood diseases .... it's a lot of Dr's and expense but it was the only way I could feel comfortable with the diagnosis of CFS ... by ruling everything else out ....
    Good luck!! xx