Please help, I'm at my wits end

Discussion in 'Fibromyalgia Main Forum' started by KMD90603, Jan 25, 2007.

  1. KMD90603

    KMD90603 New Member

    Up until 2 weeks ago, things were going great. My CFIDS symptoms were hardly noticable. The fevers, swollen glands, sore throats, and muscle aches had all greatly diminished. The only thing I suffered with was the fatigue, but even that was not as bad.

    Then, 2 weeks ago I developed a fever and excrutiating back pain. The fever was low grade, but higher than my usual low-grade fevers. It was 100.5, and normally my low-grade fevers are in the mid to high 99 range. My normal temp is the high 96 to low 97 range. Anyway, the back pain was so bad that my boss sent me to the ER (I work in a hospital). The ER found nothing wrong except a UTI, but they did not think that was causing the back pain. They sent me home with an antibiotic. However, I had absolutely no symptoms of a UTI, and everytime I take an antibiotic I end up getting a bad yeast infection. So, I decided to forego taking the antibiotic.

    Then last week, exactly a week after the first incident, I woke up with swollen glands on the back of my neck. No fever or anything, just the swollen glands. Oh, and I should mention that by this point I was starting to feel achy again and the fatigue had come back BIG time. I thought to myself, "this must be a CFIDS flareup." By the next day, the swollen glands were back to normal.

    Fast forward to today, I woke up and took a shower. I've still been feeling extremely tired and drained. Anyway, in the shower I was washing my neck and noticed it hurt in the one area. I felt and realized my glands were swollen again, this time in a different location. I also have swollen glands in my armpit. So, I knew this day would not be good. I got to work tonight and was doing fine, but then started feeling EXTREMELY achy. I took my temp and it was 99.5. It gradually climbed until it reached 100.2. Then it slowly made it's way back down. Now, it's back to normal but I feel awful.

    I guess here's my thing, does this sound like a flareup or something else? And also, if it is a flareup, how can I get my doctor to finally listen to me. I actually have two primary care doctors, and they have absolutely no clue on how to handle me. My infectious disease doctor was helpful at first, but now is of no help. I am really considering going out of state to see either Dr. Enlander or Dr. Natelson. My insurance won't cover it unless my primary care doctor gives them a good reason why I need to go out of state to see these doctors. So, how can I get my doctor to actually take me serious enough to send me out of state?

    I'm frustrated because I feel like it doesn't matter which doctor of mine I go to, no body can help me. I'm in my final semester of nursing school, so I cannot afford to struggle with CFIDS symptoms again. Last semester went so well, I just need to make it through 4 more months. Please guys, I need any suggestions I can get.

    Hugs,
    Kim
  2. Lichu3

    Lichu3 New Member

    Even if you have had back pain in the past, I would advise seeing your doctor immediately with the recent swollen glands, bad back pain, and higher than usual temps. You may want to talk to them about getting a back x-ray if it wasn't done in the ER. Secondly, consider repeating the urinalysis and urine culture although I would agree that generally, most people would have symptoms with a UTI.
  3. PVLady

    PVLady New Member

    I would see a doctor for some blood tests and urinalysis. Your current problem could be something completely different.

  4. phoebe1

    phoebe1 New Member

    I don't have cfids, but if this is a flare-up the first thing I would do is get a very potent immune booster! You need to help your body fight whatever is attacking it at this moment.
    I strongly feel that you should boost your immune system while you are looking for a doctor who can help you.

    I have fibro and a few months back I had very painful swollen lymph nodes in my neck, they were so big I couldn't turn my head, instead of taking antibiotics I took an immune booster and it worked wonders.
    You need to give your body the strength to fight back.
    I wish I could be of more help, I hope you find an answer!

    Phoebe
  5. wannaretire

    wannaretire New Member

    Kim, I was in my post grad clinical nutrition internship when I was derailed by a myriad of symptoms and my doctors couldn't or wouldn't help.No one believed me in 1982 and few believe I know what I'm talking about when I explain how my temps range and why a low temp is high relative to my chronic low temp, etc etc Our knowing our bodies seems to frighten the MD's .
    Though insurance wouldn't pay for treatment at his clinic, and I couldn't afford the $6000 ( in 2002 )
    I found Dr Jacob Teitelbaum, MD; Annapolis, MD to be knowledgeable and understanding. Vitality101.com now offers instruction on self treatment based on his respected studies. I am attempting to use FMLA to make a last ditch effort to get an MD locally to monitor my treatment based on this protocal also found in his book " From Fatigue to Fantastic ". I'm at my wit's end and nearing 50 years old. I would like to return to school and make use of my degree as an excercise physiologist or help start a non-profit to fund rehab houses for CFS/FM, etc sufferers to be guided and supported in following this or similar protocals that can give us back our lives and salvage all the wasted years of my life. I'm trying to stop my none stop venting and empower myself and it looks like this protocal is all the help available to me. So I will present it to a new primary I choose on 1/31. God help me to come back with a good report. Also, you will find MD referrals of MD's who may have specific training in Dr Teitelbaum's protocal online & in the book.

    Best Wishes,
    wannaretire
  6. i can so relate to how ill you are feeling.i also have chronic fatigue syndrome,and feel terribly ill and run down just now.

    i was brushing my teeth yesterday and noticed my tongue has a white coating on it for the second time in one year.i know the symptoms,and it seems i have oral thrush,yet again.

    i didnt go to the doctor this time,but bought a tube of daktarin oral gel.it tastes like oranges.its much nicer than what the doctor would have perscribed for me.

    i so hate this fibro/chronic fatigue syndrome.

    i dont have a active sex life,i always thought thrush was a sexual fungus thing.

    but last year the doctor told me that people with weak immune systems can catch any bugs/viruses going around.

    i have been feeling so run down and ill for about three weeks ,in truth.but ive always thought its the fibro/fatigue.so ive tried to push my suffering to the back of my mind,and get on with life.

    but now i know i have a fungal infection again,and this current bout of weakness/trembling was letting me know i have to get some treatment for it.

    its hard to know whats wrong with us,we arent doctors,just ordinary people.

    im wondering if maybe you too,currently have a infection somewhere,that needs treatment.

    the doctor told me that thrush lives in our body and works well,but when we come into contact with viruses,thrush turns against our body and we get ill.

    i dont want to wear a mask outdoors (like michael jackson does)

    so the depression you feel right now has a real cause.outdoors is full of viruses,and we with this illness are sadly prone to catching them.

    please know that i send gentle hugs your way.im sorry that you feel so down in yourself just now.but things will get better.just look for the signs,and see if theres a infection that needs sorting out.

    its hard to get through the tough times with our illness,but you arent alone,we know what you are going through.

    ive felt more tired these last few weeks,and ive been going to bed early in the evening.get plenty of rest,and drink fluids regular.just...take care of you.


    love
    fran
  7. kellyann

    kellyann New Member

    I've had some bad UTI's before that caused me to have severe back pain. Don't you think that could be the reason for your back pain too? I think I would have taken the antibiotics. A UTI can make you very sick, run fevers, and all sorts of things.I think I'd have treated it and then seen if I still had a problem.

    Just my opinion, I'm not a dr or nurse by any means, haha!

    I hope you get to feeling better whatever it is!

    Kellyann
  8. hugs4evry1

    hugs4evry1 New Member

    Did they check your urine to see that you had a UTI?

    If so, and you didn't take the antibiotics, you could still have an infection raging in your system.

    I sincerely hope you feel better soon....

    Hugs,

    Nancy B
  9. KMD90603

    KMD90603 New Member

    You all brought up some great points. I think I'll definitely make my way back to the doctor, because something's going on. Let me just clarify about the back pain though. The back pain has subsided. It happened two weeks ago when I went to the ER with the fever of 100.5. It lasted that whole day and then went away. I haven't had it since then. Now, I'm just having problems with the fever and swollen glands all over my neck and under my arms.

    I guess it's possible it could still be a UTI. But, after the back pain went away and I didn't have any other UTI-related symptoms, I was afraid to take the antibiotic and end up with another yeast infection. Just before christmas I had a bad yeast infection that took a while to clear up, so I was concerned about having to deal with that again. They had prescribed me a pretty strong antibiotic, too.

    Today I'm still feeling pretty bad. My glands hurt and I'm still feverish, although I haven't checked my temp yet. Anyway, thanks again for your responses.

    Any ideas on how to get my doctor to take me seriously? I'm thinking it's time to switch to a new doctor.

    Hugs,
    Kim
  10. buffyr

    buffyr New Member

  11. KMD90603

    KMD90603 New Member

    thanks for keeping this bumped. You guys are the greatest.

    Hugs,
    Kim
  12. mbofov

    mbofov Active Member

    If you had a UTI, it's quite likely that the severe back pain was your kidney. I've had kidney infections before and my kidney always hurts when that happens. The kidneys are in your back, right and left of your lower spine.

    So if you have a UTI, you've got to treat it. You can end up damaging your kidneys if you don't.

    I know you don't want a yeast infection, so eat lots of good yogurt if you have to take antibiotics, and also lots of a good probiotic from a health food store. Virgin coconut oil also helps kill yeast and you can add that too.

    I think you need to go back to your doctor - I would try that instead of the ER - and see if you still have UTI. Also, if it was a kidney infection, and not a UTI, that would explain why you didn't have UTI symptoms per se. But they're all linked together.

    I hate antibiotics too, but sometimes they are just necessary.

    Mary
  13. KMD90603

    KMD90603 New Member

    Yeah, it's probably wise that my doc retest me for a UTI. However, I'm now in the midst of switching to a new primary care physician, so first I want to get all of my medical records transferred over. Also, while at the ER they drew blood to check for any other infections. They said my blood work came back fine. So, if that's the case, that rules out kidney infection, right? The only reason they diagnosed the UTI is from urine sample. However, it wasn't even a culture, it was just a dipstick. So, it could have been a contaminated specimen.

    I dunno, something about this fever and swollen glands screams CFIDS to me. The fever has been gone today, but my glands are still swollen and the sore throat has decided to joint the party. These CFIDS flares are so predictable. I'm concerned because this is the second episode of fever/swollen glands in two weeks. And the swollen glands have been all over. First they were the back of my neck, now the front and under my arms. Yikes! I usually have swollen glands, but never this painful, just enlarged. Also, they are not usually in so many different places, just the ones in the front of my neck. If this is a flare, it's definitely the worst one I've had in a while.

    Hugs,
    Kim
  14. mbofov

    mbofov Active Member

    I wouldn't play doctor if I were you. Just because your blood work doesn't show anything doesn't mean you don't have a UTI or kidney infection. You can prevent a yeast infection, or at least minimize it, by the yogurt and probiotics and virgin coconut oil.

    It really sounds like you had and may still have a kidney infection from your symptoms, something you don't want to mess around with. You're still tired, not feeling well, I would get re-checked, without wasting more time.

    Mary
  15. pam_d

    pam_d New Member

    When you say bloodwork, did they do a CBC at the ER? I would think this would be very important...

    Just wondering, and hoping you feel better soon!

    Hugs,
    Pam
    [This Message was Edited on 01/27/2007]
  16. KMD90603

    KMD90603 New Member

    Yup, they did a CBC, chem panel, and I'm not sure what else. They don't really tell you everything they are doing. Although, seeing as I'm going to be a nurse soon, I guess I should learn to question things more.

    Hugs,
    Kim
  17. Cyndi40

    Cyndi40 New Member

    You and I share some very similar symptoms. When I read your post, it was like reading something I could have written myself. I was just sharing with my doctor the other day about my temperature going from way low (like 95.6 sometimes, even) up to 99.+ above... one extreme to another... and I have two thermometers, because I thought that surely something was wrong with the one I had, because how could my body temp. get that low??

    Anyway, he had originally diagnosed me in the beginning with EBV (epstein barr virus) and said that I'd had Mono at some point and wasn't treated and wasn't sure how that happened, but maybe I was so healthy when I was exposed that I probably didn't realize it myself until way after the fact. The way I understand it, everyone has this in their body?? It just doesn't always flare up? It's confusing... But my titers were high (which I still don't totally understand how to explain)...

    Anyway, I have these flares and these awful symptoms and now he has diagnosed me with FM/CFS because I haven't recovered. Lately it's been worse... I was exposed to mono again not long ago and he's sending me for further labwork to check my EBV titers again. Just a thought and may not pertain to what is going on with you at all... just thought I'd share :) Hope you are feeling better.
  18. Slayadragon

    Slayadragon New Member

    Under one current theory (although some disagree), CFS is caused at its core by viral illness (and perhaps specifically herpes family viruses). The most obvious explanation for your swollen glands and general symptoms is that you've acquired a new member of the herpes family, or that one of the ones that you already had has become re-activated. (It could be caused by a member of another viral family too, of course.)

    I personally wouldn't bother to have the often-recommended tests of EBV, CMV and HHV6 done. It's possible that one or more might show active infection, but that wouldn't give you a better idea of what to do. And if there is no active infection shown, that won't mean you don't have an active infection of some other kind of virus (since most knowledgeable people believe that there are other problematic viruses yet to be discovered).

    If that's what it is, the only real thing to do would be to treat it as you would any other virus:

    * Get lots and lots of rest
    * Take as much Vitamin C as your bowels can tolerate without diarrhea. (I've found I can take more--up to 20,000 mg or higher--if I use the EmergenC brand of packets to dissolve in water.)
    * Take antiviral herbs. (These include garlic and goldenseal, for instance.)
    * Use transfer factor. In this case, since you don't know what the virus is, a general one would seem to be best. Those are not very expensive and so your investment would be low.

    It's possible you will feel permanently worse after the active infection is over.

    If you take really good care of yourself now, and this is a new infection for you, it's conceivable that you might ditch it though. If I were you, I'd do _nothing_ but rest (not even leaving the house).

    Of course, you could consider the antiviral route. It takes a lot of effort to get this set up if you don't have an experienced doctor though.

    I don't know what is causing you to get worse, but this remark does not seem to me that you're taking a realistic approach to the whole thing: "I cannot afford to struggle with CFIDS symptoms again."

    CFS doesn't care what you can afford to do, and if you push yourself to do things that your body isn't equipped to do, you will get worse. You most certainly will get worse in the short-run, and (especially if you have an active new viral illness that your body could ditch if given enough rest) you very well might get much, much, much worse on a permanent basis in the future.

    I'd be inclined to skip the nursing classes in order to rest. Hopefully you will get back to your previous level of functioning and be able to go back and pick them up later on. Otherwise there's a fairly good chance that you never will be able to do that (or that you'll never be able to do anything with your nursing degree).

    I know this isn't what you want to hear, but I'm pretty sure that a lot of people on this board would agree with me with regard to what very well might happen to you in the future based on their own experiences with this illness.


    [This Message was Edited on 01/27/2007]