Does this sound like CFS?

Discussion in 'Fibromyalgia Main Forum' started by smokiebones, Apr 9, 2009.

  1. smokiebones

    smokiebones New Member

    A few weeks ago I posted a message about my carotid artery being sore. I mentioned it started out like I was getting a cold. Then I had a week off school (spring break), all week I could not get any restful sleep. Each time I got up I seemed to be more tired than when I went to bed. The soreness in my neck, jaw line and ear went away so I got on with life. I said to my partner that I thought I was just feeling sorry for myself. So I pulled up my big girl panties and did the darn thing.
    Last week was the first week back to school, you guessed it, my throat got sore, my gland (not my artery) on the right side is swollen and it hurts to the touch, my jaw line feels out of line, my throat is sore, I have a monster headache that will not go away just varies in intensity and, my ear hurts. Every afternoon around 12 -1 pm I crash. I have to go to sleep or I can't function. I have had FM since Dec 2006. I have always gotten tired in the afternoon but not like this!
    I took my brother to the DR. today about 2 hours away from us. On the way back I crashed! I was having a very hard time staying awake, at the wheel! That is scary!
    Any thoughts?
  2. Nanie46

    Nanie46 Moderator


    I urge you to consider a chronic borrelia burgdorferi infection as a possible cause of your and since 2006.

    Many people with CFS or FMS have later found this infection to be the cause of their symptoms.

    It happened to me....I had to do my own research and found out after 21 years that I have chronic borreliosis....lyme disease.

    Unfortunately 99% of Dr's do not know how to recognize, properly test for and interpret testing for, diagnose or treat this infection.....which is why so many people go misdiagnosed for sooooo long.

    Dr's think that a simple lyme ELISA (also called a lyme screen or titer) is accurate. They think a negative test rules out lyme......wrong!!! Lyme experts recommend not using that test at all. It missed at least 75% of lyme.

    Western blots should be done at Igenex lab in CA.

    Other labs do not test for all bands which is absolutely essential, and they also have inferior testing methods which miss many cases of lyme.

    There are many, many, many people on sites like's Medical Questions board who were originally diagnosed with CFS or FMS.

    There is a running list of well over a hundred people on our Lyme board who were originally diagnosed with CFS or FMS, later to find out they have a chronic borrelia infection.

    CFS and FMS are syndromes......just sets of symptoms given a name by Dr's who don't know what caused it. Well, everything has a cause. If you don't look for it, no one will.

    The biggest mistake I see people make on this board when investigating the possibility of lyme is hearing them say....."oh, I was tested for that and it was negative".

    Lyme is NEVER ruled out based just on a lab test. It is a clinical diagnosis based on history and symptoms.

    Here is some very important info from the best lyme experts.... (make sure you look at symptom checklist on pages 9-11) (also has an excellent symptom checklist).

    Feel free to leave a post for me on the Lyme board if I can help you further.
  3. Bunchy

    Bunchy New Member

    Just to rule anything else out first.

    Love Bunchy x
  4. richvank

    richvank New Member

    Hi, smokiebones.

    Based on what you've reported, I'd say that infectious mononucleosis is a possibility. I agree, go to your doctor, and I'm guessing that he/she will test you for mono.

  5. cfsgeorge

    cfsgeorge New Member

    sore throat, headache, crashing after school......sounds like mono. Ask for a monospot test. If your IGM comes back high, then you'll know it's mono and it will naturally pass in about 6-8 weeks with bedrest.
  6. jasminetee

    jasminetee Member

    I came down with Epstein Barr Virus which causes mono and I had the same symptoms you do only mine were on the left side. After having it for over 4 months I was diagnosed with Chronic Epstein Barr Virus. That's how my CFS developed. I'm very sorry you might have this.

  7. ladybugmandy

    ladybugmandy Member

    i would say it could definitely be CFS and i agree with the others that you should be tested for mono.

    getting to a CFS specialist early is can recover if you get the right treatment soon.

    best of luck
  8. loto

    loto Member

    as Nanie46 suggested you do, be sure to then see an infectious disease doctor to check your results. My primary doctor ordered the test for me (however I didn't get the igenex test) and the results said that P66 is present and "high". My primary doctor said the test is normal, meaning I don't have lyme. I didn't go over the results with him, the nurse told me this over the phone, and faxed me the report. So, I made an appt with an infectious disease doctor for another opinion. Of course I can't get in until May 14, so I have to wait a darn month to find out what steps should be taken! I was diagnosed with FM almost a year ago. I have experienced the pain in one side of my neck like you describe, headache and other things that are on the "lyme checklist".
    So, getting tested for lyme, in my opinion, is something doctors should do before they give us these dx's!!!!! I'm learning more and more on these boards and on the internet that I think our doctors should be doing also!!!!!! We have to educate ourselves and then educate our doctors about this stuff, and I don't think it's right to have to do that.
    anyway, i'm getting off the subject. I agree with Nanie, please get tested for Lyme to rule that in or out!

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