Fever with Fibro??????????

Discussion in 'Fibromyalgia Main Forum' started by motherof4, Aug 29, 2005.

  1. motherof4

    motherof4 New Member

    I was diagnosed with Fibro and CFS about 3 months ago. I had started a fever 1 month prior. I run anywhere from 100-101.5. My doctor is baffled because you shouldn't run a fever with either of these diseases. She is internal med. She is sending me to a Rhuemotologist. I have been absolutely miserable with pain and have every symptom on the list for both. Please-- is there anyone else out there that runs a fever. My Dr. is worrying me. She thinks something else is going on. Thanks, Barbara
  2. Rose_Red

    Rose_Red New Member

    Quite a few of my docs told me that a constsnt low grade fever was a smptom of cfs.
  3. Mikie

    Mikie Moderator

    Are your fevers accompanied by swollen lymph nodes, sore throat, and/or headaches? Most of us with these illnesses test pos. for from one to seven chronic stealth illnesses. They are considered stealth because they may not show up on regular blood tests. They hide from the immune system and the immune system does not produce the antibodies against them which would show up in blood tests.

    The only way to find them is to do PCR DNA tests or, in the case of viruses, other tests which are a little more sophisticated than antibody tests. A number of docs are trying antivirals empirically and having good luck with them.

    Some are trying antibiotics empirically. My doc did this as my CFIDS was triggered by a mycoplasma infection 10 years prior.

    The antibiotic, antiviral, Heparin treatment, and transfer factors have all helped me tremendously.

    Of course, the doc should exhaust all possibilities, but if she can find nothing wrong, you might want to discuss trying things which treat infections.

    Love, Mikie
  4. mommy22

    mommy22 New Member

    I used to have below average temp (97.8), but the last couple years i've run fever's on and off for no reason. I had one (100.2) at my last dr. visit, but wasn't sick. The doctor doesn't seem worried about it. I did have severe anemia and dr. thought i was carrying infections, but blood tests seemed to prove otherwise. SOmetimes I let my mind get away w/me regarding these fevers. I fear one day they will find something and "Oh, THAT is why you always had a fever!" I try not to worry though...that can't help the temp. Good luck and let us know what you find out. Sonya
  5. SoxFan

    SoxFan New Member

    I have always had a low grade fever (99 to 100)with my CFIDS. Why am I glad? It's the only TANGIBLE symptom I have! Fatigue, aches, etc. can be dismissed as "all in my head". I still sometimes think I'm imagining (or at least exaggerating) some of my symptoms, so having this little fever (when my "normal" temp is <98.0)is PROOF (even to myself) that I really am SICK, and I'm not being a lazy hypochondriac!

    (Maybe it goes back to my school days, when having even a slight fever warrented a day out of school!)
  6. nanajw

    nanajw New Member

    cardiomyopathy. These are also all the symptoms of that disease. I read an article that says 100% of CFS patients also have cardiomyopathy caused from viruses.

  7. Mikie

    Mikie Moderator

    I just had tests run to ensure there is no cardiomyopathy. I was sick for so long with chronic infections that I was worried about this. I wish Dr. Cheney and Dr. Lerner would publish more about their findings re: CFIDS and cardiomyopathy.

    BTW, someone mentioned that the tests showed nothing so she wasn't worrying. Unless the tests were sophisticated enough to pick up the stealth pathogens, they won't show up. Routine blood tests which are neg. do not mean that one does not have a stealth chronic infection.

    If one's doc tries antiviral meds and/or antibiotics and there is an immune response and then a Herxheimer Effect, it is a good bet that there are pathogens hiding out from the immune system and from blood tests. There are herbal alternatives to these meds. Olive Leaf Extract is one of them. The transfer factors which target specific pathogens are another good choice. They train the immune system to recognize and kill pathogens and they increase the number of Natural Killer Cells in the immune system.

    Love, Mikie
  8. hehmommy

    hehmommy New Member

    I have always run a low grade fever too (99-100) completely normal for me. They have tested me for Lupus so many times. I think some people just run that temp. I am not sure if it has something to do with Cf or not. My sister on the otherhand has always run 97 as her normal temp. Weird!! Now remember if they want to test you for Lupus it is a hard one to detect. You often have to be in the worse flare before they can see anything. I wish you luck and hopefully they can give you a reason.

    Trish :)
  9. dragenfli

    dragenfli New Member

    I have started running a low grade fever when a flare up begins. I was wondering if there was a connection--if anyone else had experienced this. I have chills all throughout the day so bad I'm drinking hot liquids and dressed in sweaters to stay warm, then at night I wake up covered in sweat soiled clothes. This flare up is the first time the sweating has been present. I'm too young for menopause. Any suggestions would be appreciated. I meet with doc again 9/9 who maybe will have more than 2 minutes to spend with me this time.
  10. dontlikeliver

    dontlikeliver New Member

    They are syndromes, which means a 'collection of symptoms' (caused by something/what?).

    You were diagnosed with a collection of symptoms - the question is: what disease is causing your symptoms, including fever, which indicate infection.

    I will repost the symptoms list for Borreliosis/Lyme disease below that I just posted on another thread called 'Lyme Disease Symptoms', along with some basic facts about Lyme disease. If you are new here, you will not know that I was misdiagnosed for 14 years with CFS and Fibro (and I have had fevers all that time also on a regular basis), until in 2003, I was correctly diagnosed with Lyme disease (which is a CLINICAL diagnosis first and foremost) and have been treated now for 15 months and have improved a lot.

    Symptoms checklist for Lyme disease:

    Unexplained fevers, sweats, chills, or flushing
    Unexplained weight change (loss or gain — circle one)
    Fatigue, tiredness, poor stamina
    Unexplained hair loss
    Swollen glands: list areas _______________________________________________
    Sore throat
    Testicular pain/pelvic pain
    Unexplained menstrual irregularity
    Unexplained milk production; breast pain
    Irritable bladder or bladder dysfunction
    Sexual dysfunction or loss of libido
    Upset stomach or abdominal pain
    Change in bowel function (constipation, diarrhea)
    Chest pain or rib soreness
    Shortness of breath, cough
    Heart palpitations, pulse skips, heart block
    Any history of a heart murmur or valve prolapse?
    Joint pain or swelling: list joints _________________________________________________
    Stiffness of the joints or back
    Muscle pain or cramps
    Twitching of the face or other muscles
    Neck creaks and cracks, neck stiffness, neck pain
    Tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity
    Facial paralysis (Bell's Palsy)
    Eyes/Vision: double, blurry, increased floaters, light sensitivity
    Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
    Increased motion sickness, vertigo, poor balance
    Lightheadedness, wooziness, unavoidable need to sit or lie down
    Confusion, difficulty in thinking
    Difficulty with concentration, reading
    Forgetfulness, poor short term memory, poor attention, problem absorbing new information
    Disorientation: getting lost, going to wrong places
    Difficulty with speech or writing; word or name block
    Mood swings, irritability, depression
    Disturbed sleep — too much, too little, fractionated, early awakening
    Exaggerated symptoms or worse hangover from alcohol

    Basic facts:

    Lyme disease is the latest great imitator and should be considered in the differential diagnosis of MS, ALS, seizure and other neurologic conditions, as well as arthritis, CFS, Gulf war syndrome, ADHD, hypochondriasis, fibromyalgia, somatization disorder and patients with various difficult-to-diagnose multi-system syndromes.

    Lyme disease is prevalent across the United States. Ticks do not know geographic boundaries. A patient's county of residence does not accurately reflect their total Lyme disease risk, since people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure for each individual.

    Fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture proven Lyme borrelial infection

    Fewer than 50% of patients with Lyme disease recall any rash. Although the bull's eye presentation is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the Erythema Migrans rash is pathognomonic of Lyme disease and requires no further verification prior to starting 6 weeks of antibiotic therapy. Shorter treatment courses have resulted in upwards of a 40% relapse rate.

    The ELISA test is unreliable, and misses 35% of culture proven Lyme (only 65% sensitivity!) and is unacceptable as the first step of a two step screening protocol. (By definition a screening test should have 95% sensitivity.)

    When used as a part of a diagnostic evaluation for Lyme disease, the Western Blot should be performed by a laboratory that reads and reports on all 16 bands as part of their routine comprehensive analysis. Laboratories (such as SmithKline) that use FDA approved kits (for instance, Mardex's Marblot) are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer. These rules are set up in accordance with the CDCs surveillance criteria. and increase the risk of false negative results. These kits may be OK for surveillance purposes, but offer too scanty of an analysis to be useful in patient management.

    A preponderance of evidence indicates that active ongoing spirochetal infection is the cause of the persistent symptoms in chronic Lyme disease

    There has never in the history of this illness been one study that proves even in the simplest way that 30 days of antibiotic treatment cures Lyme disease. However there is a plethora of documentation in the US and European medical literature demonstrating histologically and in culture that short courses of antibiotic treatment fail to eradicate the Lyme spirochete.

    There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to Borrelia burgdorferi's antigenic variability and its various antibiotic resistances.


    Do you keep a diary at all to see if there is a pattern to your fevers? And, are they worse at any time of day?


  11. motherof4

    motherof4 New Member

    I run a fever all day long. I have been tested for Lyme, Lupus, Arthritis panal, and every other blood test you can think of. I had Epstein Barr four years ago and my EBV panal came back positive--that I was heading into the acute phase. I am seeing a rhumatologist next Wed. and a pain management physician in to weeks. I am hoping they will get to the bottom of this and be able to manage my pain so I don't have to take so many narcotics.

  12. motherof4

    motherof4 New Member

    Thank you Cindylou. I am fortunate that this Rheumy treats almost all the fibro and cfs patients in the area. He is supposed to be a very compassionate Dr.

  13. maggiemae55

    maggiemae55 New Member

    i also run a low grade fever every day. usually between 99.5 and 100.3. i saw an infectiouas disease dr who had me chart my temp every day. it was as low as 98.9 (1x)to 100.3 every single day for 1 month. my ebv and cmv were elevated, but nothing else of the 300 tubes of blood (seems like that many!)came back abnormal.

    i even had a galium scan looking for inflamation, but that was normal also. he thought i had cf as well as the fibro the rhemy diagnosed the year before. my nurse practioner didn't think i had cf.

    it's soooo frustrating!! i don't even know what a normal temp would feel like!!

    warmly (pun intended!)
  14. Francey54

    Francey54 New Member

    Dear Barbara:

    It was confirmed to me by my Rheumatologist that low grade fever is a part of CFS symptoms accompanied by tender lymph nodes. I usually get it at night and wake up with it but then it slowly goes away in the day. It is so annoying. You feel sick, as if you are going to get a cold. Try not to worry about it.

    However, you should have everything checked as I did to make sure that nothing else is brewing.

  15. dontlikeliver

    dontlikeliver New Member

    You do not have a fever for no reason. I would be inclined to want to find the reason and treat it, rather that hold onto the belief it is part of a syndrome with no known cause, and no known cure.

    Why? Because it is likely that infections running unchecked (causing the fevers) in your body are doing serious damage over the years, leading to more and more progressive disease.

  16. motherof4

    motherof4 New Member

    I totally agree. That's why I am following up with the best specialists in the area--Tri-Cities Washington. I am not up for traveling and my insurance runs out at the end of September. Thank you for all your info. I had heard enough Lupus nightmare stories that I had the Lupus test done about 2 weeks ago. Unfortunately it was negative. I would have been pleased as punch had it been positive--3 weeks of antibiotic therapy and healed. Sounds like a good deal to me. I have the disadvantage of being a nurse and knowing to much. I just take one day at a time and that's all I can do. Barbara
  17. motherof4

    motherof4 New Member

    With all the reading I have done, I do remember seeing something about the Elisa test being more accurate or less accurate. I just had a titer drawn. What do you think or what is your experience with that? Barbara
  18. motherof4

    motherof4 New Member

    That's what I meant---Lyme. I swear I have lost my mind.

  19. dontlikeliver

    dontlikeliver New Member

    is to be AVOIDED. It misses about 65% of Lyme, esp in a late case. Read about it on ilads.com or lymeinfo.net (document called Seronegativity and Lyme or similar).

    As someone else said about the Lupus test (which I am not familiar with), as with Lyme, a negative test result does not mean you don' thave the disease.

    Funnily, a conservative rheumatologist recently said this to me about Lyme also but more surprisingly he said that it happens with many diseases and that he felt frustrated that most doctors have lost the skill of clinical diagnosis....I was shocked to hear it from him
  20. spirit1

    spirit1 New Member

    I was dx in '96 with FM/MPS and run low grade fevers with flares. My usual temp is 97.1 so when I get to 99 or higher I feel bad. I also get laryngitis with the low grade fevers.

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