CFS but never a fever, anyone else? Doubting Dx again

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Jan 2, 2006.

  1. greatgran

    greatgran Member

    This is my 5th year into this whatever I have and my doubt is getting to me..The first 2 years it was anxiety/depressio, then ostheoartritis with anxiety/depression , then sinus/allergies and on and on depending on what doctor I was seeing..

    I was dx with CFIDS by an internist/rheumy but she did very little testing. She went by my test from other docs..I do have a lot of cfs symptoms..How it started etc. but I have never had the sore throat or fever that many of you speak of unless I had it in the beginning when I had the swollen glands, flu symptoms etc.. Since I have been taking my temp.it is always below normal..

    Another thing is I do have some positve labs
    ANA, C-Reactive protein, and my EBV antibodies still positve ..When I confront my GP with this she says she isn't surprised..
    The Interist/Rheumy that dx me has retired..so no more help there..My doctor seems clueless and says there is nothing more they can do but treat the symptoms..

    My symptoms are : Anxiety/Depression with Agoraphobia, Fatigue, Aches and pains, mostly deep throbbing aches in my legs to the bone..
    There are days that I can go and do (which I love) then there are days in bed from fatigue..I never know how I will feel from day to day or what I can or can't do. The sinus/allergie with MCS are with me about all the time with 24/7 ringing in my ears...What ever I have seems to have a pattern..which goes like this..Have a few good days, then bad fatigue, aches, the sinus/allergy or what I call the head thing, chills and night sweats, can't seem to think clearly or remember things..Then the anxiety and finally to bed for another few days only to start the whole thing over again. I am only about 30% functional to what I use to be..I could go on and on but if you have read this far you get the picture...

    Sorry for the long post but I just doubt my dx and get so discouraged because I don't know what I am dealing with..

    Thanks for letting me vent..Any input would be appreciated..

    A great New Year to each of you,
    greatgran

    Sorry to go on and on
  2. greatgran

    greatgran Member

    Thank you so much for your reply and understanding..You did make a good point
    as to what we know we do have..I too, know I have Anxiety/Depression with agoraphobia. Sinus/Allergy problems and I have never been dx with MCS but know I have them..Guess thats enought to make you feel terrible..

    I had a hysterectomy 11 years ago so don't
    have that worry..sorry you have because that alone is enought to make you feel terrible..

    It is good to know that I am not the only doubting one..

    Thanks and best wishes,
    greatgran
  3. LClancy

    LClancy New Member

    Hi Greatgran,
    It's nice to meet you. I know how you feel. I have a bunch of dx's. Have you been dx'd with FMS? You may want to ask your doc about it. I have a below normal temp too. Normal for me is 97.4. I often feel like I have a fever but when I take my temp it's even lower than 97.4. I have CFS and FMS but my 2 girls don't have CFS. They do have FMS and the same temp as I do.
    As far as second guessing our dx, I think it's normal for all of us to do that until we get some answers about this dd. :-/ Even my doc keeps second guessing. She has me tested for MS every year, just in case.

    LClancy

    Thank you and Happy New Year to you greatgran. :)
  4. JQP

    JQP New Member

    I have FMS, diagnosed when they were investigating low grade fever. Fortunately, actually not, I had been in hospital for 7 weeks with a constant 36.2 temperature (97F) and then went to up 37 (99) which for others is normal.

    Had a hysterectomy earlier that year after gynae probs for most of my life, but not endometriosis

    And yes I question whether it is FMS or with other symptoms maybe they prefer this as a catchall so that they can send me away!! After not working for 2 years, I can balance out the fatigue, but as soon as I do too much, get massively whacked back into reality.

    Latest manifestation is palpitations, feeling faint and nausea....really scary which they are now investigating after A&E put down to a panic attack (it lasted 6 hours!!!! and nobody had noticed its onset....)
  5. KelB

    KelB New Member

    I also dont have the fluctuating temperature. I "feel" too hot or too cold quite often, but when I take my temp with a thermometer it's always pretty much normal.

    I get the occasional sore throat, but only with an accompanying cold. I've never had one on its own that I could blame on the CFS.
  6. greatgran

    greatgran Member

    Bump please
  7. jane32

    jane32 New Member

    Fevers are my main symptom then fatigue and then sleeping unrestful sleep. Not everyone gets fevers but I do because I have viruses in my system. Have you visited a FFC? They confirmed my diagnosis and made me realize that I do have CFS so now I don't worry anymore about it. I just concentrate on getting better:)
  8. greatgran

    greatgran Member

    I am not sure what a FFC center is and where could I find one ? I am certainly interested in getting a confirmed dx..
    I live in Southwestern VA and would certainly like to find a FFC center close
    and more info. on them..

    My EBV antibodies are all positive so guess I stil have active viruses..not sure that wasn't explained to me either...

    Thanks you for your input,
    greatgran
  9. hopeful4

    hopeful4 New Member

    You do not have to have a fever to be DX w/CFIDS. I didn't, and was still DX. You must meet a set of requirements set up by the CDC.

    To find out more about the Fibromyalgia and Fatigue Centers, you can search FFC on this board. Many of us are going there for treatment, and learning that we have underlying conditions, infections, imbalances, viruses, bacteria, etc. causing our illnesses.

    The FFC is strong in their thorough, diagnostic testing, their highly trained doctors, and their comprehensive treatment approaches. (I sound like an ad, but, honest, I'm just a patient there.)

    It sounds like you need more thorough testing. At the FFC, I got back almost 20 pages worth of test results that found things no other doctor had ever tested for.

    Eventually I was tested there for Lyme Disease, and the shocker was, it came back positive. No other doctor I've seen in 5 years of illness ever mentioned this as a possible cause of my debilitating illness.

    You can also go to fibroandfatigue dot com. These are the cities where they have centers.

    Amarillo
    Atlanta
    Cleveland
    Dallas
    Denver
    Detroit
    Ft. Worth
    Houston
    Las Vegas, NV
    Los Angeles
    Norwalk, CT
    Philadelphia
    Pittsburgh
    Salt Lake City
    Seattle, WA

    Call Toll Free 1-866-443-4276 To schedule an appointment or obtain additional information.

    They are set up to help people from out of town, so that you do not have to physically be there for each appointment, although you do have to for the first one.

    This is their approach, from the website:

    At FFC we take a patient centric, holistic (meaning treating the whole body, not just the symptoms) approach to your treatment and plan of action. Our six step integrated program looks at not only helping to relieve your symptoms but address the underlying etiologies that cause those symptoms so eventually they can be kept under control with a simple maintenance plan.

    Treatment needs to be individualized, so phases may occur in different orders and multiple phases are often done simultaneously, but simply put these phases can be broken down as follows:

    stabilize the patient by addressing pain and sleep disturbances;

    promote energy by enhancing the powerhouse of each cell, the mitochondria;

    balance hormones by evaluating hypothalamus and pituitary function;

    enhance immunity and treat underlying viral infections;

    address unique etiologies such as neurotoxins and coagulation defects;

    provide each patient with an individual maintenance program with the minimumally necessary medications and supplements to assure absence of symptoms.

    Masking the symptoms by utilizing only the first phase of stabilizing the patient is usually as far as most physicians get when dealing with FM and CFS. At FFC we implement the full six-step approach with each patient and significant recovery or complete resolution of symptoms is the rule rather than the exception when this multifaceted treatment plan is instituted. Take the first step toward taking control - call toll free 1-866-443-4276.

    Best wishes always,
    Hopeful4


  10. rockgor

    rockgor Well-Known Member

    there are 11 symptoms for CFS and to be diagnosed w/ it you haveto have 8 of them.

    I have the big three: depression, fatigue, sleep disturbance. I do not have others like swollen glands. Before I got this condition I had been depressed most of my life.

    One of the drs. (also a Med school Prof.) wrote an article saying CFS is just another name for depression. No need to regard it as a separate disease.

    I don't really care what they call it. It has ruined my life.
  11. jane32

    jane32 New Member

    only b/c his daughter had it so he believed in it. Anyways, I don't match the CBC criteria but he still felt I had it.

    I go to the Philly center and love it. I am assuming that woudl be the closest for you. When I was last there I met two people from VA. They came up for two days each time. Trust me it is worth the trip. They also have a long distance program.
    [This Message was Edited on 01/03/2006]
  12. greatgran

    greatgran Member

    I have the same symptoms, depression, anxiety, sleep problems and the fatigue..
    are the biggest ones for me..I loved the way you put it..It has ruined our lives, whatever they call it...

    Thanks to all of you for your help and support..Don't see anyway that I will be able to go to a FFC center because of the distance and not accepting insurance..

    Its good to know I am not alone with this doubting ...

    greatgran
  13. MsE

    MsE New Member

    So you are dealing with the "doubts" again, huh? You and I have tried to convince each other that this is "real" on numerous occasions. Remember? Guess it's my turn again.

    Yup. It's real and it's CFS. I don't have the sore throat either. And I only run one of those "for no good reason" low fevers once in awhile.

    But the chills, the night sweats, the sleep problems, the brain fog, the leg pain, the exhaustion, the weakness, the anxiety, the ennui, the dizziness, the ear-ringing, the sinus stuff, the heart irregularities, etc.

    However, I think all of us will doubt the Dx periodically because of the way this DD ebbs and flows. Just when we finally accept it, we have a day off--a day of feeling almost normal. Then back it comes with a vengeance. We can't plan and we can't promise without a backup/back-out plan.

    I can't remember how long you've been dealing with this, my friend. I take that back; your post said it's been five years for you. I was diagnosed in '97 and yes, I still have doubting days.
  14. Chermione

    Chermione New Member

    It's about the only symptom I don't get. I don't let that make me second guess myself though. As was already said, you only need something like 3/4 from the symptoms list.
    Cheryl
  15. greatgran

    greatgran Member

    Hello, its great to hear from you..I haven't heard from you in so long wasn't sure what had happened to you...

    How are you doing and whats happening in your life? Please update me on your cfs etc.?

    Thanks for your reply as I rmemeber we share a lot of the same symptoms...

    God Bless,
    phyl
  16. kylesmom

    kylesmom New Member

    I have not read any other replies (too tired this AM) so I'm sorry if I'm saying what everyone else has already said.

    I have always questioned my dx (six years). I had way too many abnormal test results that I thought someone just needed to piece together into the RIGHT diagnosis. Then I came here. I saw that everyone else had all the same strange and abnormal test results and symptoms I did, and that the diagnosis I kept waiting for someone to make was, in fact, the one I already had: CFS. It makes me sad to think about it too much.

    The first summer I was sick I ran a low grade temp all the time. Since then, I have had a low temp and no fever. Only in the last few weeks (and this flare has been the worst in years) have I had the swollen nodes and low grade temp of that first summer. I hope you find the answers you are looking for.
  17. Dee50

    Dee50 New Member

    I've had the low body temp 94.6-97.4 going on for years. Normal of me is 97.4, also low blood pressure that goes up with stress. When my temp is 94.6 I'm very ill and bedridden and it's very hard to get my body temp. back up.

    In my younger years my body would run a fever but not in the last 10 years or so even when something is very wrong no fever my body temp. drops instead.

    When I started useing my homopatic 4210 to treat the EBV I sweat lots night and day, I took it for about 5 months.

    I delt with many serious sinus problems the biggest being frontal lobe infections. Since I pulled all my teeth out I don't deal with at all nowdays. But I'm allergic to alfalfa and sage bush and I live in Idaho!lol

    I'm EBV active too still.

    I deal with extreme's in three areas fatigue, pain and brain fog. Lots of gut problems nowdays after my surgery. I take Probiotics, use a colon cleaner and drink RO water and eat lots of steamed vegs and I take a mult-vit.

    To me its a big guessing game. I wish you the best. I hope FFC helps you they have a web site with all the clinics listed.
    Dee50
    [This Message was Edited on 01/04/2006]
  18. greatgran

    greatgran Member

    Thanks for your replies, it helps so much knowing that I am not alone in doubting and all the other issues..

    The board has been a great help, in fact more so than the doctors..

    I am going to accept the fact I have something with no fix for it..I am sure its CFS but then get to doubting,that maybe its just depression, ms or whatever..

    Thanks again to each of you for your input.
    greatgran
  19. hopeful4

    hopeful4 New Member

    It is true that they don't accept insurance, however, they will give you all of the forms that you need to submit to insurance on your own.

    Many people are getting some reimbursement from their insurance. If Medicare is your primary, that won't happen.

    Labs are separate. They use Quest Diagnostics. Quest will bill your insurance for the labs directly. I have Medicare as primary, and Medicare has paid for ALL of my lab costs.

    FFC has a long-distance program. If you could possibly get to just the first appointment, the remaining appointments can be done by phone.

    I'm just attempting to give you further info, just in case it may help you consider going after all.

    Best wishes always,
    Hopeful4
  20. MsE

    MsE New Member

    Well, first of all--you signed your name Phyl. I can't believe it! I, too, am a Phil, but with an "i" instead of a "y" 'cause my folks were sure I was going to be a Phillip. So I'm Phillis.

    As for the CFIDS--I'm slowly going downhill and I don't like that at all. I'll be 72 next month and I keep thinking that this is not the way I want to spend my last years. So many plans have gone up in smoke since '97. Right now I'm battling depression, but usually when this happens it is short-lived. It's just been an extremely long bout of being unable to do much of anything. Yes. I'm feel a bit sorry for myself.

    I think the main problem is that I get so darned lonely. Living alone is the pits, and although I have five kids and seven grandkids, I don't get to see them as often as I'd like because of being so exhausted--too tired to travel.

    However, Christmas was wonderful! Maybe that's why I'm feeling blue, Greatgran. It's that letdown that happens after having people to visit.

    Back to the symptoms: you know, I have sort of decided that if it isn't CFIDS, it's "something" and it doesn't really make much difference what they want to call it. None of the tests show anything that anyone can do much about, so the doc says "CFIDS" and put it in writing. I just hate it that I'm getting so weak. Makes me wonder, periodically, if I'm going to die soon. You know what I mean?

    Hugs to you. Phil