Discussion in 'Fibromyalgia Main Forum' started by patti.p, Sep 1, 2010.

  1. patti.p

    patti.p New Member

    I was diagnosed a year ago with Fibromyalgia. During this current episode which has lasted well over a month, I have experienced both a low-grade fever and sub-normal body temperatures ranging from 95.3 to 99.3. I can go from being ice cold to breaking out in a sweat within a matter of minutes. Has any one else experienced this symptom? All of the aches and pains are present, weakness in legs, utter exhaustion and fibro-fog. My PCP has tested me for everything under the sun because of the fever which he claims is not a symptom of Fibromyalgia. I have an appointment with my rheumatologist next week....but in the meantime my PCP is making me feel like a crazy person
  2. karynwolfe

    karynwolfe New Member

    Fever is not a symptom of FM, no. I get that, and for me it's caused by a combination of Lyme disease and bartonellosis (the latter I got from a cat). From 96.5 to 100 degrees (but most often 99.4). I test negative for both Lyme and bartonella but I still have it as shown by my symptom patterns and relapsing fever...but of course that makes getting treatment VERY VERY DIFFICULT, when it doesn't show up in my labs. If you want more understanding about possible Lyme or coinfections such as bartonella, you can try posting this message at the Medical Questions board on Lymenet.org, and they can help. It's a very active board. :)

    Autoimmune conditions can also cause fever but I'm not as knowledgable about that, sorry. :( Fibromyalgia needs a trigger, so it's more likely than not that something--an infection, an underlying condition such as RA or Lupis, etc--is your primary disorder, and the FM has hopped along as an unpleasant co-morbid condition. Fibromyalgia rarely travels alone. Continue to look for the cause until you find it, because FM does not cause fever.

    Good luck,

  3. patti.p

    patti.p New Member


    Thank you for responding to my post. I have been tested for Lyme disease, parasites and/or ova in the colon from having had amoebic dysentary and c-difficile. I have Severe Major Depressive Disorder and recently recovered from an acute episode following a family tragedy. Also have IBS. Can't tell you how many tests I've had in the last month to rule out other diseases. Spinal x-rays showed an inflamation in the spinal cord and have no clue as to why doctor hasn't looked into that more extensively. I have been researcing the net for weeks and suggested to physician that all symptoms were congruent with Transverse Myelitis. His response "You don't want to have that," and dismissed it like I was the village idiot. Anxious to see my rheumatologist next week. Thank you again for your response.

  4. karynwolfe

    karynwolfe New Member

    I think the only thing worse than having no mental illness component and being told you do, is actually having one to the effect that doctors blame all of your problems on it! That's the only thing I can think of as to why any physician would ignore a fever accompanied by spinal inflammation.

    I'd have to agree that TM would be unlikley because you'd probably end up in the hospital from it.

    But until you can find the cause, you can try natural things to alleviate your symptoms and reduce inflammation. Curcumin is an anti-inflammatory you can research and get at any health food store, and olive leaf extract is the best infection fighter I can think of, in the event that you do have some pathogen causing the fevers. Curcumin also helps pain, and olive leaf extract has the potential to help with mental clarity, as well (but be wary of ones that use cellulose as a filler).

    Welcome to the forums and let us know how your appointment goes :) We've all been there...
  5. patti.p

    patti.p New Member


    Thank you. I will keep you posted. Interestingly, the doctor keeps asking me if I'm sure I'm not depressed. Finally told him to check with my psychiatrist as I had answered the question 3 times in a 10 minute period. It is frustrating as the dickens.

  6. Nanie46

    Nanie46 Moderator


    Hi...It is very important for you to know that testing for lyme and related coinfections is VERY unreliable for many reasons.

    A negative lyme test should never rule out lyme, although 99% of Dr's mistakenly do this all the time because they are not lyme literate.

    A subnormal body temp points to a chronic Borrelia burgdorferi infection (lyme). Fever points to bartonella or Babesia.

    These infections are often found together.

    I agree that you should go to lymenet.org and click on flash discussion....sign up for free...click on Medical Questions board....read posts and post your questions.

    There are many people there.....including me, who have only tested negative for lyme, yet we have it.

    Please take a look at this excellent symptom list on pages 9-11 of this paper and check out pages 22-27 for symptom info on Babesia, Bartonella, etc....


    Also, please read through this booklet and symptom list....very important....


    Any Dr who tells you that you do not have lyme based on a negative lab test, does not know anything about lyme.

    [This Message was Edited on 09/01/2010]
  7. karynwolfe

    karynwolfe New Member

    Speaking of which, Lyme can definitely cause your spinal inflammation with associated leg weakness. Which I must mention, because it's one of my Lyme flare symptoms, that I'm currently experiencing as I speak (well, type)! :(

    We've been through it all, on this board. There are a lot of people on here who have had their lives changed after finding they actually had infections such as lyme complicating their condition, so we're pretty passionate about it. Misfit101 is around here somewhere, I think she's the most recent person to find out they had Lyme because of all our advocating! Lol! But she's starting to get better, last I heard. So I do again encourage you, in addition to hearing from others on this board about other possibilities, to look more into this very treatable disease, despite a "negative" test.

    I always say, if it were something easy to diagnose, they'd have found it already. So it's probably time for the more unconventional things to come into play.

    I was also going to suggest a thyroid function test but there is NO WAY that could inflame your spine. Either way I'm sorry you're going through this and you're right, the stress of your recent "episode" is probably what triggered things to become so severe so quickly.
  8. Chelz

    Chelz New Member

    Your PCP is wrong. Years before I was diagnosed with fibromyalgia, I was constantly taking my temperature, this was back in the late 80's and all through the 90's. My family, back then, thought I was a hypochoncriac because I went through a lot of thermometers.

    My temperatures would range just like yours did. Sometimes it would be lower like 95. something, then for no reason at all, it would jump to 99.2. I always thought I was coming down with something because of the aches and pains and fatigue.

    Now, I believe all along it was the FM. It still happens today, but I'm also 45, so I don't know if it's a combination of FM and maybe peri-menopause. BUT, I wasn't in peri-menopause back in the 80's and 90's and I had the same symptoms back then.

    The problem with PCP's and even some rheumatologists is that they continue to focus on only the "tender point places" on our bodies that have pain or sensitivity. They do not focus on the other "TONS" of strange and weird symptoms that FM people have.

    You are not crazy. I felt the same way. One of my doctors back in the 90's took my mother aside (she was his patient too), and asked her if it's possible I was depressed, or looking for attention, or maybe just a plain old hypochondriac. I was so angry, that I never went back to him again (familiar story?) I can't explain what it is, but I know you are not crazy and some PCP's need to be more educated, or at least not to dismiss this puzzling symptom. Hugs to you, Chelz.
  9. Elisa

    Elisa Member


    A while back I started a thread called the Fever Club - it has lots of ideas regarding a fever. So you may want to check it out!

    I feel a fever above 98.6 is never normal. I spent over three years with a significant daily fever - never below 99 and always there - as high as 101. The average was high 99's - like 99.5-99.9.

    I saw so many docs - no help at all. Of course, they often blamed me - as always...

    My fever is now periodic and that's a big deal for me - it's mostly not there - only if I am severely stressed (like no sleep or similar).

    I think - that high doses of Vitamin D helped/cured me of my daily fever. I had to start slow - or I'd get so sick I'd end up in the ER. I used a spray Vit D - for sublingual absorption (to bypass potential gut issues - like malabsorption).

    I now take 4-6000 IUs a day and get sun as much as possible. If I let up in the least - the fever returns. So that's my proof.

    Vitamin D in high doses is also an antiviral and anti-retroviral - producing special anti-microbial peptides that fight lots of bugs.

    I hope this works for you - please let us all know.

    God Bless,


    P.S. Many medications can also cause fevers - like antibiotics, etc. So you might look into that too.
  10. patti.p

    patti.p New Member

    I want to thank you all for the information and support that has been offered. I joined the Lymenet BB and read through a great deal of the literature paying particular attention to the symptom guidelines. They just don't seem to fit; no rash, no headaches, no swollen joints or swollen glands, no cardio or pulmonary symptoms. Nonetheless, I am going to keep researching. I was very interested to learn how inaccurate the test was for Lyme disease. So, still searching and continue to appreciate your input.


  11. Nanie46

    Nanie46 Moderator

    Hi again,

    I am glad you looked at lymenet.

    Keep it in mind because I do not remember a bite or a rash either, yet I have lyme (only about 50% of people have a bullseye rash after a bite).

    I also do not have swollen joints or swollen glands. I am not short of breath and even though I have a right bundle branch block that I did not know about before, I do not have cardiac symptoms.

    The symptoms vary from person to person, with the most frequent symptoms being fatigue, sleep problems and cognitive problems.

    It also depends which coinfections are involved.

    For years I did not consider lyme because I thought "I do not have joint pain and I did not have a bullseye rash".....big mistake on my part.

    Here is some more info:


    Hope you get answers and get well.
    [This Message was Edited on 09/02/2010]
  12. patti.p

    patti.p New Member

    Just got the results back from the thyroid tests....all negative. I think it is going to taake me awhile to sort out all of this new information and get it organized in my head....right now it is all kind of swirling around in my head. Fibro-fog? With all the information you have provided and the sites you have sent tme to....I think that I am in a much better position to meet with my rheumatologist next Tuesday. Weather change today.....everything aches. UGH!

  13. caroleye

    caroleye New Member

    I began many years ago w/CFS; then thyroiditis; then Lupus; then Fibro, and my Lupus tests would come up normal sometimes, and others I'd be borderline, but I have all the symptoms.

    I can't tolerate the Lupus RX, but many do. Just rule that one out.

    Frustrating to be experimenting forever, and the Dr.'s don't even know.

    Good luck in finding out the cause.
  14. patti.p

    patti.p New Member

    Saw my rheumatologist today. She said I was having an acute episode of Fibromyalgia but there was something else going on. I said the Lyme's disease had been ruled out due to test results which I know are not reliable. She has referred me to an Infectious Disease specialist. Will he be able to tell me if I do indeed have Lyme disease? Am I going in the right direction? Thoroughly frustrated and aching and still vastly fluctuating temperatures.


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