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    Old 06-05-2005, 09:34 PM   #1
    Camel22
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    How Tired Do YOU Have to Be?

    Wondering 2 Questions:

    (1) How tired do you HAVE to be to be diagnosed with CFS? Although I have all the symptoms and still have not been diagnosed, my doctor advised that since I can sleep 6 hours a night straight & "function" throughout each day (even though I'm very tired), that I do not have CFS. Reading this board leads me to think that you REALLY need to suffer a loss of lifestyle due to fatigue to 'qualify' for CFS. Thoughts?

    (2) Everyone keeps talking about how the immune system is compromised. Wouldn't a low/high White Blood Count be something required for a proper diagnosis? My White Blood Count is on the very low end of normal (4.1 w/ a range of 4.1 - 11.3). Neutrophils were 52.8% (Lab Range: 40-78) & Lymphocytes - 31.5% (Lab Range: 15-50). That said, doctor said I had nothing to worry about and if the WBC was HIGH, that would be more reflective of CFS. It doesn't make sense, does it?

     
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    Old 06-06-2005, 03:54 AM   #2
    kiya
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    Re: How Tired Do YOU Have to Be?

    Hmm, not sure about question 2) at the moment!!

    As for your first question, you have to have prolonged fatigue for 6 months or more to be diagnosed with CFS. I'm sure you need to display other symptoms as well - like sore throat, fever, muscle aches etc. I sleep for 9 hours each night and, like you, manage to function each day. I've experienced no enforced loss of lifestyle through my illness... I just feel damn tired all day long! But my doctor has diagnosed me with CFS.

    Having done a lot of reading on the subject, I'm inclined to believe your doctor is right and mine is wrong. Normally for CFS to be diagnosed you do need to have experienced a substantial loss of lifestyle.

    Regarding your second question, I'll take a look at my full blood count and get back to you!

    kiya

     
    Old 06-06-2005, 08:09 AM   #3
    Bothrops
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    Re: How Tired Do YOU Have to Be?

    For me it went like this:

    One day im fine and working 40 hours a week the next day I have a flu like nothing I have ever experianced. Basically this flu has lasted two years, well two on 6/24 at 9:45 am. Thats right, I know exactally when I died right down to the minute, a lot of people with CFIDS do. Fatigue is not even close to what I feel, complete exaustion is. Every part of my body is effected. As far as sleep, I dont. I call it half sleep, I never get a deep sleep. When I wake my legs ache in pain, joints and muscles. I feel cold all the time and hot as well yet except for that first week never run a fever, it rarly gets over 97! The sensations are numerous and debilitating. What started as tingling moved to buzzing and is know vibrating. My lowered blood pressure has resulted in 24/7 lightheaded and dizziness. My ears and nose is stuffed and has been since the beginning. My eyes are very screwed up, they dont track right and are light sensetive. My brain feels very foggy, I cant concentrate and forget where I am at, like being in a dream. When the weather is bad all of these symptoms increase and so does my urine output, around 13-14 times a day. I just recently found out this is quite common in CFIDS. Theres more but im tired of complaining about it.

    Just being tired does not mean you have CFIDS, lazy Drs. use it like a crutch. I will say this, the ten years prior to my illness I felt change in my body that I know led to where I am today. feeling tired during the day and wired at night. Skin changes like flushing, nail fungus and blisters/cracking of hands. Depression and anxiety. Sore throats, enlarged lymph nodes in groin, swollen glands in neck. All sorts of gastro problems.

    I guess it depends on what kind of Dr. you see to what the diagnosis will be. My GP says CFIDS, and I had to lead her into that direction. My Rhumatologist says Fibro/CFIDS and my new Dr. an LLMD of coarse says lymes, I did however test positive to Babesia. I have also tested + to EBV, CMV, HHV-6, ANA sinusitus and left ear is off 27% The three herpes viruses I have are very common in CFIDS and most patients test + to 1 of 3 or 2 of three. I guess I am unlucky for having all three, at least I am not bed ridden like many.

    If your doc says you have CFIDS than get him/her to test you for the three herpes viruses and an ANA. If you dont test + to any it does not mean you dont have CFIDS but I would look into other things such as deppresion, allergies or maybe a bad habit like diet, drugs and/or alcohol. CFIDS is not much of a diagnosis and definatly does not pinpoint the problem. There is a huge list of things that can cause CFIDS. It is a process of elimination. I guess if there is a true CFIDS than it would be considered a post viral syndrome since this is the only cause that has no identity. Please correct me if I am wrong.

    Last edited by Bothrops; 06-06-2005 at 08:19 AM.

     
    Old 06-06-2005, 10:36 AM   #4
    CFD 333
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    Re: How Tired Do YOU Have to Be?

    Quote:
    Originally Posted by Camel22
    Wondering 2 Questions:

    (1) How tired do you HAVE to be to be diagnosed with CFS? Although I have all the symptoms and still have not been diagnosed, my doctor advised that since I can sleep 6 hours a night straight & "function" throughout each day (even though I'm very tired), that I do not have CFS. Reading this board leads me to think that you REALLY need to suffer a loss of lifestyle due to fatigue to 'qualify' for CFS. Thoughts?
    CFS isn't really just about being "tired"...it's really more about what we call Post-Exertional Malaise which refers to a worsening of symptoms 24-48 hours following physical or emotional stress. This means that activities and situations you used to be able to handle quite well are now completely draining you and causing you to feel physically ill and sometimes bedridden and housebound. In my example, I was able to run 2 miles every other day and lift weights on opposite days before getting CFS. Now, if I even attempted to run a quarter mile or lift weights I would be completely out of breath and extremely sore and feeling really ill sometime the next day and it sometimes take up to a week to recover from it. So, its not really about just being tired, but recovery is seriously impaired. Also, because of the lack of the ability to handle stress and pressure and since the course of illness can be very unpredictable, many like myself aren't able to hold a job.

    Of course, there are other key symptoms that are usually involved and are part of the big picture like Sleep Disturbances, Medication/Food Intolerances/Sensitivities, Emotional Disturbances (ie Depression, Anxiety). A doctor has to take all these things into consideration when making a diagnosis and also has to rule out other possible causes.

    Also, the onset of illness is very important. Many of us experienced what seemed like a severe bout of the flu at the beginning. We can practically tell you the EXACT MOMENT that everything went wrong. From the flu-like illness, we never got better and most likely our symptoms just kept getting worse.

    Quote:
    Originally Posted by Camel22
    (2) Everyone keeps talking about how the immune system is compromised. Wouldn't a low/high White Blood Count be something required for a proper diagnosis? My White Blood Count is on the very low end of normal (4.1 w/ a range of 4.1 - 11.3). Neutrophils were 52.8% (Lab Range: 40-78) & Lymphocytes - 31.5% (Lab Range: 15-50). That said, doctor said I had nothing to worry about and if the WBC was HIGH, that would be more reflective of CFS. It doesn't make sense, does it?
    What you say makes sense however the white blood cell count has very little to any significance in the severity of the disease. My count was slightly elevated in the beginning and has returned to the low end of normal and I'm still quite ill. CFS is a disease of an immune system dysfunction. This dysfunction involves the superactivation of certain areas of the immune system (ie viruses and allergies) and insufficient reponses in other areas (ie bacteria and fungus)...its all about the Th1/Th2 shift. Also, many people note that their Natural Killer Cells Count is below normal which does seem to contribute to the disease in some way and may be able to be improved with certain supplements like Beta-Carotene, Vitamin E, Probiotics, Fish Oil, Transfer Factors, Thymic Protein A, and Whey Protein. Nothing has been officially proven to work, but you can do some research into these and ask around to see what people are saying helps them feel better.

    Last edited by CFD 333; 06-06-2005 at 10:43 AM.

     
    Old 06-06-2005, 11:09 AM   #5
    Camel22
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    Re: How Tired Do YOU Have to Be?

    Thanks for that response. I do recall being sick with flu-like symptoms right after a tick bite which was last August. I've had three ELISA blood tests done and all have been negative for Lyme. I also saved the tick and had the tick autopsied and the tick was negative for Lyme, Babesia & Erhlicosis (??). Even so, I was on 6 weeks of Doxycycline at 300mg per day. The "Flu-like" symptoms went after 2 days but the fatigue & joint pain have stayed. Both the fatigue and joint pain are more nuisance than anything -- I can still get out of bed and still function at a job. I'm also experiencing on-and-off stomach disorders. What I feel might have happened is that I was taking too much Doxycycline & it essentially killed off a lot of the good bacteria in my stomach leaving me potentially exposed to some sort of virus. The frustrating thing is trying to differentiate CFS from just being tired & Having some joint pains. I honestly believe everyone has joint pains from time to time and in todays society, everyone is tired. Frustrating.

     
    Old 06-06-2005, 12:42 PM   #6
    Bothrops
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    Re: How Tired Do YOU Have to Be?

    I do believe that everyone expriances pain and fatigue to some extant. The question is did you experiance it before you got sick and found the tick. As far as testing for lyme, they all say it stinks and that you could have several negitives and then a positive. I tested positive and I am still skepticle. I would think that if you had lyme and was treated with 300mg of doxy that would be enough. At one time when you got lyme you got very ill with the flu and had a bulls eye rash and lived somewhere in the NE. All of a sudden its showing up everywhere with and without rashes and flues or so they say.

     
    Old 06-15-2005, 06:49 PM   #7
    leemarie
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    Re: How Tired Do YOU Have to Be?

    The fatigue that i have experienced with CFS is profound and overwhelming...i have nearly gotten into accidents, had to pull the car over and sleep. I too have out of whack sleep pattern, can't even get my mouth open before noon, but functioning pretty good at 2 am! thought this was due at first to years of shift work i used to do, but i guess this is common in ppl with cfs also. sometimes wbc count is elevated, sometimes not...i dread when it is because then doc wants to put me on antibiotics and i have to fight her. lol. i hate em. and i have really really low blood pressure, almost a joke when i get it taken, they have hard time finding my pulse also. my basal temp is low also, when i feel like i have a raging fever, my temp never goes much over 99. and body pain everywhere, cannot exercise...i guess the ? is and always has been for me, how much life has this thing robbed from me? ALL OF IT! i was stricken in my 20's during a very active lifestyle ( i was an avid bodybuilder and into step aerobics big time), and not even allowed to mourn it. i think the worst part is being treated like a hypochondriac by everyone, and knowing that some days your doc really hates to see you coming. i remember the first year i gained over 100 lbs...and when i went to the doc with pictures to show them what i used to look like a year previous, they just kind of laughed it off as, well, you're approaching 30, women gain weight as they age, blah blah blah...i was TERRIFIED! sorry didn't mean to go off and vent on you, anyway, back to original ?...how tired do you have to be? for me, if it robs you of quality of life, you can't do simple things you used to do every day, that's tired enough.

     
    Old 08-11-2005, 04:58 PM   #8
    joanne uk
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    Re: How Tired Do YOU Have to Be?

    Quote:
    Originally Posted by Camel22
    Thanks for that response. I do recall being sick with flu-like symptoms right after a tick bite which was last August. I've had three ELISA blood tests done and all have been negative for Lyme. I also saved the tick and had the tick autopsied and the tick was negative for Lyme, Babesia & Erhlicosis (??). Even so, I was on 6 weeks of Doxycycline at 300mg per day. The "Flu-like" symptoms went after 2 days but the fatigue & joint pain have stayed. Both the fatigue and joint pain are more nuisance than anything -- I can still get out of bed and still function at a job. I'm also experiencing on-and-off stomach disorders. What I feel might have happened is that I was taking too much Doxycycline & it essentially killed off a lot of the good bacteria in my stomach leaving me potentially exposed to some sort of virus. The frustrating thing is trying to differentiate CFS from just being tired & Having some joint pains. I honestly believe everyone has joint pains from time to time and in todays society, everyone is tired. Frustrating.
    hi camel22 i had flu like symptons 16yrs ago and i have been diagnosed with me.cfs like you though after coming down with flu like symptons for months after i started with muscle aces/pains severe fatigue i cant say then it stopped me working or functioning but as time went on i started to incur differant symptons as well always with fatigue, i started to itch all over now/then,then it would go for a while but yrs on it became permanent so put on meds for it started to get constant tonsilitis (had them out evenyually)severe stomach problems irritable bowel /balance/cordination/muscle sprains loads other stuff but this all startd comming over the yrs more severe to the point i had no choice but to give up work i couldnt function right any more, if you are experiencing fatigue/muscle aces/pains my advice would be to seriously rest and take things easy because if it does turn out to be cfs your chances might be better if manage better at the beginnig as most of us go into denial at first which is silly because we just end up burning ourselfs out most cfs sufferers get diagnosed over a long duration when keep going to gp complaining of fatigue along with an armful of symptons and when other tests have been done to rule out any other causes for yor fatigue i hope this is useful for you joanne

     
    Old 08-12-2005, 03:17 AM   #9
    peregrine
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    Re: How Tired Do YOU Have to Be?

    CFIDS stops you in your tracks. If this hasn't occured I would question the diagnosis.

     
    Old 08-12-2005, 05:51 AM   #10
    kiya
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    Re: How Tired Do YOU Have to Be?

    I couldn't agree more, peregrine. I'm still trying to find an answer for my fatigue et al, but so far no success. Luckily the local CFIDS unit at hospital has proper guidelines for referral, including an insistence that if you are to be considered for referral your illness should have stopped you from 'carrying on as normal'.

     
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