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Curious about What they used to blame the swollen lymph nodes and low grade fever on

Discussion in 'Immunological' started by Mya Symons, Jun 2, 2010.

  1. Mya Symons

    Mya Symons Mya Symons

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    I have both CFS and FMS. I have been on online fibro forums, but this is the first CFS/ME forum I have joined. When I first got sick, I had many doctors tell me it was an emotional or psychological problem. I believed them up until I got the involuntary muscle spasms and jerks. I did not believe that the muscle jerks could be due to stress, depression or PTSS. Further, after my son was diagnosed, I new there was some other reason.

    Something I did not remember right away when they told me it was psychological (PTSD), was the swollen lymph nodes and low grade fever; which, for the first few years of my illness, I had all the time along with feeling like I constantly had the flu. You certainly can't fake those or think them into happening. So my question is for people who have had ME/CFS or XMRV for many years--What did your doctors blame the swollen lymph nodes on and the low grade fevers? I am curious--Did they give a reason for those? Mine was supposedly mono flare ups, but they never tested me for it.--insurance would not pay fo it.r

    PS--I do think there are some great doctors out there who are willing to go outside the box and willing to try different treatments. I have not found any :), but I have hope.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Good luck with finding a good doctor, you might find one here through others on this board who live in your area. I think going through a stressful time can be apart of the problem in that it can set you up for cfs, like lowering your imune system and if your unlucky enough to get mono or some other infection which then can turn chronic or damage your immune system in some way, bang u get cfs. As far as painful lymph nodes, it certainly can be mono reactivating or some other viral infection. If u find a good doctor they can help u treat the symptoms of cfs, a great doctor will know what to test for and do some off label prescribing on an educated guess and hopefully be very helpful. U might need both types of docs.

    Good luck with everything, searching this board will help you with alot of questions,
    cheers!!!!!!
  3. jessjb79

    jessjb79

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    Oh how my fevers annoyed my doctors. Because I think even they felt foolish trying to blame a new constant higher than usual temperature on depression or anxiety. After 4 trying years I gave up trying to explain to them that I had no real clinical symptoms of depression or anxiety but sure did feel constantly like I had the flu with a temperature of 101 F at times for no apparent reason. I still chuckle over how I used to tell my primary doctor (who actually really did believe I was physically ill with something just did not know what) about these fevers months after month. And how he skirted the issue for months until one day his nurse had taken my temp before I met with him and upon seeing my temp on the chart he said to me 'well you have a fever today and that means I now need to approach your illness in a different way'. duhhhh. Annoyed but still humored I accepted his referral to an infectious disease doc to approach this new (but actually not new) fever. Ofcourse I got no where with the infectious disease dr either and also not with the dozens of drs after that. The bar was set so low for doctors at that point that if one even admitted I was not healthy, and even if he/she had not one good treatment idea, I was smitten! The best I've gotten (and I am really grateful actually) is doctors who believed me, called my problem POTS and CFS and autonomic dysfunction and tried to treat the symptoms. I'm just waiting for the science to finally prove itself and guide them. Knowing they want this help for themselves too in how to treat and help me has been meaningful.
  4. camas

    camas Senior Member

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    When I was first ill my EBV titers were off the chart, so I was given a diagnosis of chronic EBV. This was a few years before we were saddled with the name CFS. I was extremely fortunate to have a good doctor who didn't believe it was all in my head.

    Over my 20+ years with CFS I've had a couple of good docs who retired and one great CFS doc who died. :( I'm less than enthralled with my current doc, so am about to embark on another hunt. I wish you luck in yours too!
  5. Stone

    Stone Senior Member

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    When my doctor was trying to tell me this was psychological, I said, "Now that would be a medical marvel, wouldn't it? I mean, just think, what are the odds that all my siblings and my daughter and me all have the same rare psychological disorder that manifests itself with the exact same symptoms and swollen glands and fever? Doctor, if I could do all that with my mind, I should be able to bend spoons, too!" He laughed and never mentioned it to me again, although I still don't think that convinced him it wasn't at least partly psychological.
  6. Athene

    Athene Never give up

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    My doctor's approach to the swollen glands was the feel them and press down so hard that I cried and then insist that they weren't swollen. It was like he was trying to use brute force to crush them down flat.

    As far as the fevers were concerned, he told me I was not using my thermometer properly. When I said my Dad took my temperature (who was a surgeon and went to med school with this same doctor) he said that I must have had some minor short term infection that had now passed, and also I should put on lighter bedclothes to avoid getting too hot and sweating at night.

    They see what they want to see and believe what they want to believe.
  7. Mya Symons

    Mya Symons Mya Symons

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    Interesting. I had a similar thing happen to me. I finally got a referral to a rhuematologist. I had been complaining of a low grade fever for years with my symptoms (usually around 99 to 100 farenheit). But, when I finally would get to my appointments, it was gone. That day I went to the rhuematologist, I had the fever and the swollen lymph nodes. The nurse kept on coming in and asking me if I had a cold or a flu and wanting to know if I had congestion or runny nose or sore throat. I kept on telling her there were no cold symptoms. Often I would get a sore throat with the swollen lymph nodes, but not that day. That is when I finally got diagnosed (5 years later). Everytime I saw my primary physician she would write on my chart lymph-adenitis. Also, I have Hashimoto's disease--fancy name for hypothyroid. I went to see an endocrinologist and she sent me for an ultrasound because she thought I had a very large thyroid cyst or tumor. They did the ultrasound and it ended up being huge swollen lymph nodes. So they had diagnostic evidence that this is what was going on with me, but they were still telling me it must be psychological. I was "just depressed." I hear this happends all the time. And then they wonder why so many of us are angry and mistrustful.
    Enid likes this.
  8. Timaca

    Timaca Senior Member

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  9. taniaaust1

    taniaaust1 Senior Member

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    I just got told all the time "you must have a virus" being told that went on for 9 mths ... this got crazy for me as who catches a virus every couple of weeks! I never got told I had a psychological illness as it was obvious I didnt.. my glands were very very swollen so i looked like a bullfrog, my temperature was consistantly high.. over 39 C
  10. ukxmrv

    ukxmrv Senior Member

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    I was told varying things

    1. Your lymph nodes are not swollen and you are imagining that they are
    2. Everyone gets swollen lymph nodes every now and then
    3. The egg sized lumps on your lymph nodes are just from a "virus" and are nothing to be worried about
    4. You are putting on weight and the swollen face/glands are just fat

    The fever was a harder one to prove as when I became ill (acute viral onset) my body temperature plunged. It was usual for me to have a temp of 35.

    For the first 5-10 years I would get regular bouts of high fevers with sweats, swollen, infected throats/tonsils and swollen glands.

    Then the high fevers went down and I stopped sweating altogether. The glands still flare up and the throats. Exercise brings them on each time.

    xmrv+
  11. gerri

    gerri

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    When I 1st got sick, it was thought to be a virus, 6 months later and my glands were still swollen & also had a low grade fever all the time. tested + for EBV & CMV antibodies & IGG. The glands go up & down all the time. Mostly in the neck region at the base of the skull. They hurt as well and I know when they are coming up, as there is a small pimple thing that appears & then the gland swells. I ts been nearly 10 months since I was the sickest and this is still the most prominent symptom. There is nothing you can do about the glands, unlike alot of the other symptoms that u treat symptomatically as they appear. pretty frustrating, as they feel like eggs at times. Alos had a sore throat for about 3 months, that went away & came back again for about a month. Sometimes its hard to know whether you are actually "sick" or is it the CFS playing up??
  12. Jai Guru

    Jai Guru

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    I was so blessed that the severirty of my viral infection was wel documented by my GP. I went to my doctor to show how a recent wrist injury had finished healing when I threw Up. With a physical exam He was afraid I had meningitis and called an ambulance. I was like naaaah I'm fine it's the flu I just need rest the er sucks please let me go home. He was about to say ok when I stood up and immediately lost my balance and could not regain it. Well I agreed to go. The er docs said I was fine sent me home. Next week I woke up with such terrible pain in my joints neurological and flu symptoms. It felt like paralysis it really did I thought I couldn't move. Well since my hair was orange the er guys assumed I was seeking drugs and called me terrible things. I sweat through sheet after sheets while the occupational nurses were franticly trying to convince the on call doc that I really needed an iv and serious medical attention. 12 hours of neglect with no food and the inability to life my head to drink li demanded to be released. A month later they discovered the coxsackie virus and my extremely elevated tcell count. I still am so angry at that er doctor, though I was panicking because of the pain and not communicating well they should be able to treat me respectfully regardless of their ability to diagnose me..

    Because I was called a physiatrist case the doctor wouldn't touch me or listen to my list of symptoms. He just leaned over my bed and laughed into my face. I hope his attitude would change if he knew I was suffering from cfs. :(
    taniaaust1 and overtrain like this.
  13. overtrain

    overtrain Medical Mafia needs to die via this virus.

    (quote) He just leaned over my bed and laughed into my face. I hope his attitude would change if he knew I was suffering from cfs. :([/quote]

    Mine actually said it's normal to have an ongoing high fever of 99-101... then claimed my neck nodes were fine... i saw doctor after doctor- unfortunately at the same hospital- & it wasn't until I went to the ER a doctor there diag. me with possible CFS & definite adenopathy, & said I needed to see the Infectious Disease Dept. asap. THAT doctor's consult got blocked by the others doctors I'd seen, & the hospital told me not to return for this issue.

    So much of what I read is medical malpractice, underdiagnosis, & plain ignorance. All fun & games to laugh, but when one of their family member's stars up with these symptoms... it's intensely infuriating to get treated like a malingerer, headcase, etc. And I'm a somewhat conventional- and very young looking- 50 year old white female american with few other health probs (& those are structure-oriented, like carpal tunnel), who's obv. taken great care of herself all these years. And with zero drug/alcohol addiction. I can't *imagine* how much harder this would be as an 'other', i.e., orange hair, etc. in these settings.

    But no, the fever has nothing to do with crawling to the bathroom, extreme dizziness, dropping so much weight it's dangerous, & no, the cognitive difficulties, although I've taught college for over a decade, must all be manufactured by my purdy 'lil head... also what they fail to realize is what we have to LOSE, versus GAIN, by being sick.

    Last, since noone would give me anything, I ordered some antibios off Amazon from a petfood store.... yeah, this is what I resorted to. Funny how the fever went away after 100 doxys. My CFS is improving, albeit slow like a salted slug, & am continuing alternative trmts. A naturopath immed. diag. me with CFS & adrenal fatigue.

    Great comment re bending spoons. That should be the spoonies' slogan. Cheers,

    Iowa,
    USA
    Jai Guru and taniaaust1 like this.
  14. overtrain

    overtrain Medical Mafia needs to die via this virus.

    Same thing here with a broken rib, smashing it further in, then saying "Oh, it's probably not broken..." Uh, yeah, turned out on the xray to be so, & got broken because I coughed too long & hard... ebv...mono....CFS.
  15. kgg12003

    kgg12003

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    When I hear about swollen lymph nodes I think of Bartonella.
  16. Tito

    Tito Senior Member

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    We should have gone together to that appointment because the reason of my swollen nodes was because I was very skinny and my skin was too thin. I received no explanation why they were so painful though: perhaps my hair colour?
    Over the years, all these comments made me realise that these doctors are just morons...
    taniaaust1 and ukxmrv like this.
  17. Mya Symons

    Mya Symons Mya Symons

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    LOL. There are so many weird explanations for the lymph nodes I am actually sitting here wondering if someone was told it was their hair color.
    overtrain likes this.
  18. sickness

    sickness

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    It may sound strange, but I have named one of my lymphnodes Bruce, as it has a tendency to 'hulk-out' when I'm feeling sicker.
    I was told by a doctor that sometime lymphnodes just do that for no particular reason ooooo-kay........:cautious:
    I'm another one who actually has a frequently low temperature, the lowest I have measured was 34 degrees celcius (normal being 37.3). It may have been high at the beginning, but I just never measured it (nor did my doctor, sigh).

    BTW, love the surrounded by assholes saying, really cracked me up!

    take care,
    ness
  19. Mya Symons

    Mya Symons Mya Symons

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    Your Bruce lymph node made me laugh. I think I will find names for mine. :) 34 degrees Celsius is 93.2 degrees Farenheit right? That seems scary low. I wonder if it could result in hypothermia? I am still baffled that doctors don't seem to notice there is something wrong.

    I also like your quite from Invictus. It fits.
  20. Mya Symons

    Mya Symons Mya Symons

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    Wow, you would think he would be at least slightly worried that if he were mistaken there would be a lawsuit. I once went to the emergency room for what turned out to be a bad post-operative infection (that put me in the hospital for a month). When I told the doctor about the FMS and CFS he rolled his eyes and sighed loudly and proceeded to tell me it was probably nothing. Boy was he in a hurry to get back to my room and get me in the hospital after he saw the blood test and scan results. Suddenly very nice too.
    Jai Guru and taniaaust1 like this.

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