4 month Fever: Need Help with Emotional Side

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Nov 8, 2007.

  1. Elisa

    Elisa Member

    Hi Everybody!

    First thank you to all of you for your patience and suggestions regarding my 4 and half month battle with my fever.

    I have been to my second Infectious Disease doctor - this time at the Cleveland Clinic. And so far nothing...

    I am now battling the emotional side of this fever. Meaning I am having trouble dealing with it - especially the higher the fever goes and the longer it goes on.

    My fever was higher than normal today inching up to 100.5 to 101 and I am an irritable, teary, frustrated mess.

    The sad part is people/my family are starting to tell me to "just try to ignore it" and "not worry about it."

    I was such a mess in the grocery store today I knocked down jars of baby food and they splattered everywhere - and in my fevered state I was just paralyzed.

    I have reached a wall in terms of dealing with this and am looking for emotional coping ideas to calm myself down...I am really awfulizing this fever - thinking the worse. (Just got EFT DVD's today)

    The doctors say nebulous things - like it's now not looking like its an infection...and I press them for what that means and they say lets have another appt in 4 week - 4 weeks - waaaay too long for me.

    So anyway - looking for some wisdom - praying for guidance and any imput from anyone. I really need you guys tonight. Feel kinda at wits end and am so tired of the battle and the belittling I am taking from the medical community and of course, most of my family (not that I can blame them - it must be upseting and frustrating).


    [This Message was Edited on 11/08/2007]
  2. blkkat

    blkkat New Member

    I'm so sorry you are going through this!

    do you know how to do visualization ?

    it has helped me deal with all my pain when i feel like i have nothing to live for, i take a warm bath with a candle a big sea sponge , a water neck pillow and turn lights off and no one is allowed to bother me .
    i have a lot of different kinds of Cd's i play softly that have the ocean sounds plus lite music in the back ground.

    have you ever been to the beach? i imagine im there w/the sun on my face its warm i hear the seagulls the sound of the waves ,i feel the wet sand on my bare feet ,smell the salty air i try to be there if you will.

    that is how i calm down also do deep breathing while taking the sea sponge w/ warm or cool water and squeezing the water over your face and back ,relax think about all the good things in your life , i no you are in pain and feel sick , but you must keep on keep-in on !!! after put the softest pjs on and drink a nice cool class of water and slip into a nice soft bed and try to get some well needed sleep.

    i care!!!!

  3. Elisa

    Elisa Member

    Hi blkkat!

    Your description of visualization is fantastic - sooo relaxing - I'm am going to try it...

    You are so kind to share this with me - I am trying to find new things I can do that will help me cope with the fever better.

    Thanks so much - I just love the ocean and haven't seen one for years...

    Thank you for the "i care" part - it really helped!


    [This Message was Edited on 11/09/2007]
  4. Forebearance

    Forebearance Member

    I'm sorry to hear you're going through this, Elisabeth. It does seem like my relatives have a limited attention span for watching someone feel bad. After a certain amount of time and sympathy, they don't want to hear about it any more.

    What has helped me get through tough times is I guess an attitude that I have to save myself. I don't expect doctors to save me any more.

    I have listened to guided visualization tapes/CDs, which do the work for you. They describe what to picture in one's mind, and often go through a relaxation exercise.

    One of my favorite tapes is by Bernie Siegel. It's meant for cancer patients, but I like it. He describes throwing an employee appreciation party for all the cells of the immune system that are working so hard. I could really feel my gratitude for my T-cells and etc., which have a thankless job.

    I don't know exactly what they're up to, but I know they are working hard and trying their best to make me healthy again.

    I hope you can find ways to survive this stage you're in.

  5. pam_d

    pam_d New Member

    Boy, it sounds like the docs are stumped, but the good news---and I know you want an answer---is that your blood work isn't showing any kind of rapid deterioration. And as much as you want a cause for this, so you can get some help for it, you don't want blood work numbers in the critical zone. Mine deteriorated very fast when I was sick. I know you are totally frustrated, I would be, too....but I'm glad your tests aren't showing anything scary. I've been there, and it isn't easy, either.

    In some ways I think your anxiety now about your fever, is almost worse than the fever itself. And I know it's easy to have that happen when you feel lousy day after day and no one seems to be able to tell you why. It is VERY tough emotionally.

    I'm wondering about seeing someone like a therapist---and I mean, NOT a psychiatrist, but a family therapist who specializes in chronic illness. There are those out there who specialize in exactly that; when I first got FM, I started seeing the most wonderful woman who regularly worked with people just like me---she was great, a real advocate for me, and in fact, was the one who suggested I might have FM....I'm just wondering if someone you could talk to about your frustrations and fears might not help a little----wouldn't solve the mystery of your fever, but might help you cope with it while you are still looking for answers.

    I'm so sorry this is still plaguing you; mine only went on for a couple of weeks before I got my diagnosis, but a fever can be debilitating and draining, I know. I hope you can get to the bottom of it soon....in the meantime, consider talking to someone who can help on the emotional side of things, even just to get you through the short term.

    I will say a prayer you find answers soon, Elisabeth!


  6. pam_d

    pam_d New Member

    Bumping for you...

    Feeling any better? I hope you are, let us know when you can...

  7. jasminetee

    jasminetee Member

    I hope you're feeling better by now. That fever's gone on a long time. I think it probably is a CFS Sx like your immune system is on overdrive, that happens with this DD. It may be in response to an infection but that can possibly be a reactivation of a virus you already had. Herpes viruses can flare and last months and longer. I know it must be awful to have a constant fever.

  8. Elisa

    Elisa Member

    I am hanging in...still fevered and trying so hard not to be thinking about it...It plays with my head a lot.

    Sometimes I can pretend I'm killing bugs and it's a good thing and other times I worry deeply.

    I want to believe it's a good thing - i think I need to believe it. But I still find myself in daily tears over it.

    One infectious disease (ID) doc is having me graph the fever over the next month arghhhhh so I have to take my temp several more times a day - that's probably why it's so in my head.

    Anyway, I guess "temperatures patterns" can give clues to their cause. Mine is normal in bed at night and starts climbing around 11 AM and keeps going til I go to bed. It's interesting because this ID doc says intermittant fevers are much easier and mine has been steady except for that one qwerky but wonderful week.

    He also said my physical exam gave him 4 issues to explore and when I asked what they were - he declined to tell me. So does that mean he knows something or just made it up?

    And another thing - he didn't order a single test for infections. Just a CBC + platelets, TSH BLD, and a C reactive protein.

    The only thing he mentioned is temporal arteritis - and then said he usually doesn't explore that until age 50 yrs.

    But without you guys - I just couldn't do it some days.

    Thanks PAM!

    Thanks Tee!

    Thanks J!

    Thanks Jacula!

    Thanks Forebearance!

    Thanks Lisa!

    Thanks everyone,


    [This Message was Edited on 11/12/2007]
  9. jane32

    jane32 New Member

    I have been there and still am in regards to fevers. Mine lasted straight for a year and a half then it went to just two weeks then just a week out of the month. It was awufl and I saw close to 30 drs. for it. My blood work was perfect and finally I got a diagnosis of CFS which really didn't mean much to me. Life must go on so for me yes visualization of a very cold ocean and the water on my head helps cool me down.

    Now the tired miserable hot part of the fever sometimes I just have to take time out for myself and focus on something else other then me like meditating or artwork, decorating, etc. If I do too much or during ovulation my body freaks out and that is when I get the horrible chills, fever and malaise. Just try to rest..resting now is key meaning just lie there no shopping, watching tv or anything..just read your mind.

    I know it sucks. I a have one now but it will get better...just hang in there..I have to tell myself it all the time. The worst part really was dealing with the drs. and then finally realizing there is nothing they can do which put all the weight back on my shoulders to make it as comfortable as possible. It some ways it is nice to know you have the control though.

    I am still unable to work but I can cook, bath and live a pretty much normal life which I wasn't able to do 3 yrs. ago.

    I was anal with my temps the drs. thought I was a nut case I am sure. I took it thre tiems a day for 2 yrs. basically and had it color coded and everything. I thought they woudl take me more seriously or give me a diagnosis if I had "hard facts"!

    Did you get blood cultures done? I had three rounds they really did think it was an infection or a virus at first. By the 6 month I knew it would be a long time before I ever felt like myself
  10. Elisa

    Elisa Member

    Hi Jane - you speak like one who knows - you are now part of my fever club...

    Thank you so much for sharing your story with me. There are so few of us that have or have had a daily all day fever - in the past I had a day here and there - but that's not the same to me.

    I have not had any blood cultures - although they have done an echo to look for vegetations on my heart valves. I think blood cultures won't work because I have been on antibiotics for 2 yrs straight.

    During your fever what was the range and pattern -- Do you recall? Did anything trigger it? Had you had any dental work?

    Just wondering - alwys wondering.

    And yes it truly is a bummer...but message from friends like you really helps!

    Thanks again,


    Absolutley beautiful wedding picture - really amazing! Is that the Princeton University chapel? It reminds me of it!

    My favorite toast and applies to CFIDS too:

    "May all your joys be pure joy and all your pain be champagne!:

    [This Message was Edited on 11/12/2007]
  11. jasminetee

    jasminetee Member

    I'm sorry to hear that it's continuing on. Does it feel like a constant fever to you or is it just that the thermometer shows it as one?

    I get a lot of low-grade fevers like that but I don't think it's continual for me. I don't take my temperature much anymore so I don't know what is these days. I am usually very hot nowadays but I'm going through peri-meno so hot flashes are happening too and I figure it's just from that. I do wake up drenched in sweat especially on my face and over my eyes and i keep the house between 62 degrees F and 70 degrees F 'cause I hate being so hot and sweating so much.
    It saves on heat at least.

    I've read that a constant low-grade temp. is normal with CFS.


    [This Message was Edited on 11/12/2007]
  12. jane32

    jane32 New Member

    No it is in Philadelphia..Ss. Peter and Paul Cathedral. In the beginning it felt like 25 days out of the month....I just felt liek I kept getting sick.

    Well once they finally leveled off I got them right after I ovulated and they continued until my period so about 10 days and the first few days of it it feels like the flu I would get a sore throat, all night chills and all...now they tend ot come and go. I have tried to find a trigger but really there is nothing. I know when I do to much I just have to stop what I am doing and lie down and when after I ovulate it is still a problem. It is more then just a raised 1 degree temp like you it is around 101. I tried.and..and tried to search for a cause but really that just made me more upset instead I just try to live with it now and sometines I have to cancel plans but that is just life and my friends and family members that have stuck by me and those that didn't during my worst time I had to say good bye too. They just won't really supporting me so I needed to take a break from them. I definitely lost a lot of friends in the process but now I am off to a better and fresher start. I just have to igrnore my Mother in law sometimes!
  13. Brownie08

    Brownie08 New Member

    Elisa - you sound exactly like me. I have had a fever since July. I wake in the AM and I feel normal - as the morning progresses, I can feel the heat start to rise, my face starts to hurt and by 11:00 I am up to 99.4 - it is clock work....I keep the fever until 10:00pm - and then it returns to normal. I have been to every Dr and had every test - all came back fine...
    Blood work, CTScan, Infectious Disease, Ultrasounds, Endoscopy...Allergist...I am a healthy gal....according to them. But I don’t feel healthy. I feel like I am getting the flu every single day. I am getting use to it...so in a way I am feeling better...and knowing that I don’t have some fatal disease helps too - but I am wigging out over the cause. The Doc wont even consider CFS. I am not fatigued...but I take a million supplements a day to prevent fatigue.

    Do I just let this fever run its course - or do I keep looking for an answer? I have stopped working out and being as active as I usually am...but I do work everyday in a high pressure sales job...which I am sure does not help.

    It is amazing to me that there are so many of us that do not have a cure to what ails us...
    But it is good to know that we have each other to lean on.

    Thanks for listening - and please let me know if you find an answer to this madness.

  14. Elisa

    Elisa Member

    Hi Brownie and All!

    Just curious - did you have dental work of any kind done before or around the time of the fever? Such as root canal, cavities, crowns, gum issues, etc.

    I am wondering lately if the hidden infections are in the mouth or bones of the mouth...

    Intuitively, so you feel the fever is an infection of some sort? What does your gut tell you it is from?

    Let me know and thanks so much for your support and imput!

    God Bless,


    PS. I have now had my fever since June of 2007 - 1 year and 5 months.
    [This Message was Edited on 11/18/2008]
  15. Brownie08

    Brownie08 New Member

    Elisabeth - I did not have any specific dental work done. I did have my annual cleaning in June, but no cavities or otherwise. I looked up Temporal Arteritis - I sure do have many of the symptoms...including my Jaw aching. That has been an issue for months...my neck always hurt and my eyes hurt...when my fever is on.

    Otherwise, my gut is out of juice - I do know what this could be. I have spent way too much time trying to self diagnose, which has put me into a panic most of the time.

    You have had your fever for 1 year and 5 months...OMG! I hope that is not my case....I pray every day that it will go away and I can get back to my normal self.

    I hope that yours goes away soon too!!!

    All my best~

    Brownie :)
  16. wendysj

    wendysj New Member

    When I first got sick... I had a fever for a year. Never went above 101 so the doctors really didn't respect it. I had a great GP and he sent me all over trying to find out what it was. I had lymph nodes removed because they thought it was cancer. I was tested for everything the 8 doctors I saw could imagine. That's when I went to the Mayo and they diagnosed CFS.

    The jaw locking up was a problem for me too. My face actually hurt too. These things still happen to me now when the severe fatigue sets in... Docs have all told me it is a part of CFS.

    Good luck!

  17. Brownie08

    Brownie08 New Member

    So - my Drs do not think I have CFS - since I do not have sever Fatigue. Is it possible to have CFS without extreme fatigue. I am tired, but not bed ridden, I think that I am tired from the 99.4 fever every day. Right now I am about to get my period and I am exhausted but still plowing through. My Bloodwork is totally fine - but I am obviously fighting something off.

    Were your lymph nodes swollen? Why did they remove them? How was your bloodwork?

    Thanks for your 2 cents...

    Brownie -
  18. wendysj

    wendysj New Member

    Yes, they were swollen all the time. They removed them to do a biopsy. They did find infection in the swollen lymph nodes but nothing they could name. ??? My bloodwork showed EBV and I had mono in the past... I also had a slightly elevated viral count. That's what lead them to CFS. I wasn't bed ridden but sometimes I couldn't take a shower or cook dinner. It was SEVERE fatigue.

    I hope that isn't what you have. I hope they find something that can make you 100%!

  19. Brownie08

    Brownie08 New Member

    I hope so too - but the Drs are totally stumped!
    I hate not having a name to this illness - yet I am not sure I want to have one.
    All I know is that I am ready to feel good again....its been a long time!