Where Do These Body Chills Come From?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Jan 19, 2009.

  1. greatgran

    greatgran Member

    Do any of you get chills orfeel so cold nothing seems to help. Mine is usually afternoon I get these body chills like I am freezing. I put on extra clothes and have to go to bed with covers and still chill. This is worse when I am having worse than usual days. Also have the chills at night then wake up warm and have to start taking layers off. I have CFS so they say and feel miserable most of the time. About to just give up.

  2. Nanie46

    Nanie46 Moderator


    It is common for those of us with FM or CFS to have temperature dysregulation. It could be fevers and chills, thyroid dysfunction, hypothalmic dysfunction causing night sweats, or a number of things.

    Have you investigated the possiblility of lyme disease? Fevers and night sweats are on the symptom list. Almost all the symptoms of lyme are the same as FM, CFS as well as some other conditions.

    Many people who were diagnosed with FM, or CFS were later diagnosed with lyme and improved on antibiotics.

    I don't want anyone to miss their chance to get well.

    I urge you to check out the symptom list in Dr Burrascano's paper, "Advanced Topics in Lyme Disease-Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" October 2008 ...it can be found at :


    Also check out the symptom list on page S5 in the ILADS Guidelines found at:

  3. greatgran

    greatgran Member

    I have been tested twice for lyme which came back negative, my doc feels certain it isn't lyme but who knows. I don't ever have a fever or night sweats but do feel I have the flu all the time and I do feel so much better after being on an antibiotic but now I am so allergic to antibiotics that I do not know of one I can take. I too have a sinus infection that I feel has never gotten cleared up.

    Thanks for your reply,
  4. Nanie46

    Nanie46 Moderator


    Many people with lyme have never tested postive. Regular labs are about 30% accurate. Igenex is about 70% accurate.

    Lyme should never be excluded because of a lab test. It is a clinical diagnosis based on history and symptoms. I highly urge you to read and research lyme like I did in the last few months. You will be ASTOUNDED!

    It is also a clue that you feel better on antibiotics. Please look into this further. Read some of my other posts including "I started educating my PCP about lyme at my yearly visit".
  5. bdancer

    bdancer New Member

    I'm not sure if this is the same thing...

    I am always having these strange "chills" (that's the only thing I can call them).
    They are not exactly like chills from being cold. I do tend to usually be cold - but these happen even when I'm not cold. They feel like when you get a "chill up and down your spine" only they run through my whole body like waves. I could also describe it like electricity, if that makes any sense!

    Does this sound the same?

    I'd like to know what causes this too!!

  6. Rafiki

    Rafiki New Member

    I'm sorry you continue to have such distressing problems. I'm sure you have looked into this with you doc already and may have posted about it already but so many of the problems you are having do sound like thyroid issues.

    We have spoken about anxiety before, which can be thyroid related, and the deep intractable cold can also be caused by thyroid.

    Even if you have addressed this with your GP, it might not be enough. Have you seen an endocrinologist?

    That said, I experience "thermostatic instability" (problems regulating body temp and intolerance of both heat and cold) with ME, too. However, I have never seen an endo and can't say that I could not be helped by one.

    You've not been having a good time, at all. I hope things improve for you very soon!

    Peace out,

  7. greatgran

    greatgran Member

    Nanie 46, I will confront my doc again about the lyme the doc I have now won't listen but I am going back to the doc I had from the beginning he will listen and work with me. I stopped going because it takes forever to get in to see him and he is out of town . I have gone down hill since I stopped seeing him, mainly because he listens to me.

    Ddancer, I to have the chills you speak of but the ones I was talking about are just my body is cold. Guess its a combo of both.

    Rafil and Jamin, I too have thought of my thyroid since my T3 is low as I stated above I am going to get back in with my first doc because he will listen and try what I think my body needs. Yes, I did see an endocrinoligest in the beginning of trying to get dx but all the docs say my thyroid is fine. I had all the antibodies test.

    I am beginning to think I have had a sinus infection for 8 years and it never cleared up.

    Going to get back in with the doc that would listen to me.

    Thanks and God BLess,

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