Tuesday, January 11, 2011

First Real Diagnosis

I have fibromyalgia.  This came as a bit of a surprise since I'm not really in much pain.  I have some mild joint pain and muscle cramping which gets worse when I'm tired but most of the pain is well managed with Celebrex.  For me the worst symptom out of the list is the debilitating fatigue.  It stops me from doing anything.

However, during my rhumetology exam this morning she pressed on all the fibro points and every single one hurt.  Some more than others but I had pain at every single site.  The weird thing is that she doesn't treat CFS at all and knew nothing about XMRV.  She didn't even know what it stood for never mind that it the virus probably linked with CFS.  So I asked her point blank for a referal to a CFS doctor.  How could a fibro doc not know anything about CFS when they are more than likely related??

Anyway, the upshot of this whole morning is that I'm being tested for the parvovirus (the one and only virus missed by the ID doc), vitamin D deficiency (how was this one missed) and the usual inflamation markers (to see if they are still trending downwards).  Another six vials of blood and my first urine sample.  She wants me to have a brain MRI and a neuro consult for the memory loss, brain fog and confusion.  We discussed the usual possible meds for fibro including Lyrica, Neurontin and Cymbalta.  Not sure if I want to go the med route yet particularly since I already have headaches and nausea and some of the meds make these worse and I'm not in much pain. 

I am begining to suspect I have a high pain threashold.  Not surprising after I worked in a garage for years as a mechanic.  You have to be 'tough like bull' to work there.  After four years I often didn't even know when I was bleeding all over the place.  When I had my kid I lasted an entire day in full labor with no drugs.  It was at my husband's insistance that I finally gave in and had an epidural.  But I digress...

I just have to wait for the official letter and phone call with the test results which should be next week.  Then it is on to a CFS specialist, the endo doc and a neuro doc.  I just hope I get through all this prior to the deadline on my LTD.


  1. Actually, I think what you encountered isn't so unusual. Fibro is somehow accepted by more docs than CFS as being a "real" illness, especially among rheumatologists. So, their ignorance of CFS is often on purpose.

    With joint pain, fatigue, and brain fog being major symptoms, have you been tested for Lyme and all of its co-infections? I've probably asked you that before, so excuse me! It's just that it fits your symptoms so well.

    Parvo is one of the known infectious triggers for CFS, like mono and Lyme.

    Let me know if you have trouble finding a CFS doc - there are a couple of online databases that might help. At least this doctor is continuing to run tests!


  2. The infection disease doc I saw in the fall gave me every known viral and Lyme test known to mankind and everything came back normal. I gave him about 20 vials of blood between the three visits I made to his office. He was amazingly thorough so I'm quite happy with his work.

    I have been trying to find a CFS doc for months now. I would love the contact/database info. I'm in the general vicinity of Boston.


  3. I'd love to know the database/contact info. for the CFS docs, too.

  4. Baffled, unless things have changed you have many ME/CFS doctors in the Boston area. I'm sure they will be listed in the database.

  5. If that is the case then my primary is doing a sucky job of finding them.