Could this be CFS?

Discussion in 'Fibromyalgia Main Forum' started by Tamsin72, Apr 21, 2007.

  1. Tamsin72

    Tamsin72 New Member

    I've not felt like myself for about 2 years.

    I am tired all the time. I have swollen lymph nodes in my neck (which have been biopsied and not cancer) that have been there about 2 years. I have frequent pvc's and take a beta blocker for them.

    My primary doc keeps saying "well it could be CFS" but hasn't actually said it is definitely CFS.

    The only thing I wonder is I don't get debilitating fatigue. I just have a general sense of tiredness. Like I didn't get enough sleep. I never wake up in the morning feeling refreshed even though I sleep at least 8 hours each night.

    I have more of a "lazy fatigue". I could put put around the house all day and not have energy to clean up. I still go to work every day, but I come home and I'm usually too tired to do anything else but sit in bed and watch tv.

    Could this be chronic fatigue? I guess I always thought CFS sufferers had debilitating fatigue where they could stay in bed for days. I've never had that.

  2. jole

    jole Member

    Hi there! I really don't know the answer to what's wrong with you. Have you had your thyroid checked? Has your doc ruled out any/everything that it could possibly be? Since there is no easy answer for CFS everything else must be ruled out before a diagnosis can be made, I believe, just as FM.

    I hope you get your answer, and I hope it is something easy to fix. Don't give up looking for answers. There is lots of info on this board and on the NET in general. Hope you have a good doc that is willing to work with you and keep trying. Best of luck to you!
  3. Bunchy

    Bunchy New Member


    I felt much like you at the very beginning of my illness until I ran myself into the ground.

    It is important to rule other conditions out and if it is CFS at an early stage, educate yourself as much as you can and do the right things.

    I, too, feel if I had acted earlier on the hunch I knew something was very wrong and not tried to push on through it for so many years, I would not be as sick as I am now.

    Take care and good luck.

    Love Bunchy x
  4. Tamsin72

    Tamsin72 New Member

    Hi thanks for the responses so far.

    I wanted to add I have had a bunch of tests done. I did come up positive for a prior Epstein Barr infection, meaning I've had it at some point in my life.

    My thyroid levels are fine, but I do have nodules (also benign on biopsy) on the thyroid that we're currently trying to shrink with synthroid.

    Several of you have said if you had known earlier you could have done something so it wouldn't get so severe.

    What would you have done?
  5. Tamsin72

    Tamsin72 New Member

    Just bumping for more advice.
  6. GigglePoet

    GigglePoet New Member

    HI Friend,
    Make sure they do test for TSH,t3 and T4 they usually dont' do that...that is where the mess up comes..I have hoshimotos and then was subclinical..but they weren't testing it right..Also..Synthroid has been shown to not help very much for people with CFS and Fibro. Hope you find some answers.
    Hugs ~ GigglePoet
    [This Message was Edited on 04/22/2007]
  7. olivian

    olivian New Member

    Hi Tamsin...sounds a lot like what I had with fibromyalgia too. I just suggest having your blood calcium levels checked because if they are high, like mine were, it could indicated a parathyroid (not thyroid) problem which is 100% curable.
    Why not at least check this out. You can read about the symptoms of parathyroid disease at
    Good luck....I do feel for you...I was there...for a long time.
  8. mezombie

    mezombie Member

    You asked"

    "Several of you have said if you had known earlier you could have done something so it wouldn't get so severe.

    What would you have done?"

    I would have taken a leave of absence from my job. I would have rested more, without any stimulation like TV or reading. I would have found a doctor who was willing to give IV nutritional suppport, specifically a "Meyers Cocktail".
  9. balletdancer74

    balletdancer74 New Member


    As others have said, you should have your thyroid checked (which you said you have and all was fine save for nodules on your thyroid), certain viruses, etc.

    You should also have your pituitary and hypothalamus checked. An MRI (rule out MS, lesions, pituitary tumor/mass, etc.) and blood test should be done.

    Check for any vitamin/mineral deficiencies.

    Anemia? Can cause "tiredness," headaches, aches, etc.

    Adrenals should be checked as if they're not functioning properly, fatigue can develop along with some other symptoms.

    Have your cortisol levels checked as well.

    I hope you don't have CFS/ME, but if your doctor finally decides that you do have it, you've come to a great place for support and advice.

    Keep us posted!

    To better days,
    LB32 (Leeza)

    Also, you might want to get a sleep study could have sleep apnea or something...

  10. Lichu3

    Lichu3 New Member

    If your fatigue came on rather suddenly, like after an acute flu episode, consider getting checked for HHV-6, a virus thought to be involved in CFS in some cases. There is alot of interesting work going on right now especially in use of antivirals. Use search with term 'HHV-6.'

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