Discussions By Condition: I cannot get a diagnosis.

Extreme fatigue and mild flu-like illness

Posted In: I cannot get a diagnosis. 29 Replies
  • Posted By: Anonymous
  • November 30, 2008
  • 09:06 PM

I'm a woman in my mid-twenties, and for about a month now I've had this maddening illness. It started innocuously enough - with a mild sore throat. However, it just won't go away. Sometimes it seems gone for a day or two, maybe even a few days, and then it returns again. The symptoms are:

* FEELING EXTREMELY TIRED ALL THE TIME. That's the main symptom. Any exertion makes the tiredness much worse. I walk from the bedroom to the kitchen and feel as if I've just completed a marathon. Rest doesn't do anything to relieve the fatigue. I can be actually lying in bed doing nothing and just overwhelmed by the feeling of tiredness. It even makes falling asleep more difficult (though in general my sleeping patter is not disturbed). With this kind of fatigue also comes a tunnel vision of sorts. I tend to focus on the one thing I'm looking at, and the rest seems kind of blurred out. This causes a feeling of being somewhat disconnected from the environment. I know it sounds weird, but I have trouble trying to describe it. It's not that pronounced, but it's there.

* Weird feeling in the chest. As if there is a big lump occupying my lungs. That's the second worst symptom. It feels very strange and very bad. It's not painful per se, but something is definitely not right.

* Mild sore throat on and off. I feel the need to clear my throat a lot, but the "clearing" doesn't do anything.

* Low appetite.

* Night sweats, hot flashes.

* Enlarged lymph nodes - but only around the throat, not anywhere else.

* The weirdest symptom is that exposure to cool (but not too cold) environment perks up energy levels, while being in a warm/hot room brings on all the symptoms and causes severe feeling of hotness and tiredness. Yet overexposure to cold also makes the symptoms worse.

What surprises and confuses doctors is there lots of symptoms I DON'T have.

* I don't cough at all, and my lungs sound clear. All chest infections I know about (pneumonia, TB, bronchitis) come with a cough, but I just have this unpleasant weird feeling in the chest that no one can explain.

* I don't have a fever. A lot of the time I FEEL like I have a fever (feeling hot, fatigued, and generally unwell), but my body temperature is actually normal.

* No runny nose at all.

* No headaches.

* No joint pains and aches.

* Blood tests for enzymes, Epstein-Barr virus, blood cell counts came back normal. Slightly low on white blood cell count, but that's how it was a year ago during my last physical, and I felt fine then.

For now the doctor prescribed taking Vitamin B for two weeks - so far (about 1 week later) there is zero effect.

This thing is extremely debilitating. I don't want to do anything, can hardly concentrate. I used to be quite active, but I can't tolerate even a thought of any exercise anymore. Work is torture, but taking time off work doesn't improve anything. I look normal though, don't cough, don't blow my nose, so some I get a feeling that lots of people don't even think I'm sick, just that I've gotten lazy and am slacking off. All I can think about is Chronic Fatigue Syndrome - nothing else seems to fit. That sounds unencouraging since no one knows what it is and how to make it go away. Are there any other conditions that might explain this? Thanks!

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29 Replies:

  • Some sort of a post viral fatigue?
    Anonymous 42789 Replies
    • December 1, 2008
    • 10:03 AM
    • 0
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  • Hey, sorry to hear about the trouble you've been going through. If it's any comfort to you, I've been going through a similar experience for the past few years. It all started after I got a really bad cold which lasted for a couple of weeks & I've never recovered (fully). I can go weeks feeling ok, then go weeks feeling extremely ill. In fact, my symptom list is growing and getting more extreme. The problem is, nobody can find anything wrong with me. I've had every blood/stool/urine test known to man with everything coming back negative. I've even been tested 2 or 3 times for the same things. The doctors are stumped. It's very frustrating when you look "well" as people do start to wonder if it's all in your head. I'm in the same situation. I'm male in my mid twenties and have been suffering from extreme tiredness aswell as most of the other things you've listed. How long ago did you first start experiencing these symptoms??
    BRANDNEWSTART 4 Replies
    • December 1, 2008
    • 03:40 PM
    • 0
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  • I've had something like this off and on for 1 and a half years. It seems to go away when I really stop concentrating on it and when I remember it, it comes back to varying degrees. Very weird. Symptoms have included:-- extreme fatigue-- shortness of breath-- pounding/racing heart-- extreme muscle aches with little exertion-- feel like can't get a deep breath-- sometimes can feel faint-- just walking a few feet makes me exhausted and out of breath-- can't walk into a store and stand still without needing to sit and catch my breath from heart poundingI'd have this odd fatigue just make me feel like I can't catch my breath, like something's going on in my throat down to my stomach. Stomach muscles feel tight like I'm unconsciously stressing them.This has lasted for days, weeks, months then goes away for weeks and months!!Seems to be controlled by thinking or not thinking about it. I have had these tests:chest x rayscountless EKG'sat least 2 echocardiogramsbloodworkorthostatic testingran around with osat monitor on my fingerholter monitors30 day event monitorGonna get EGD to check my throat and stomach next (I have GERD.)Cardio doc can not find anything wrong with me. Regular doc says anxiety. (I have a LONG and SEVERE history of Anxiety disorder and Panic/OCD and Post traumatic stress plus major depression.) I have seen 2 cardio docs, and neither found any problems. I even saw them in the midst of this stuff. And surprisingly, STRANGELY, it all just up and disappeared one day and didn't come back for MONTHS. (!!!!)I should add that I had been on Lisinopril for about a month or so just before this started. I'd switched from my regular Monopril (for high blood pressure) which I'd been on successfully for a few years because Lisinopril was cheaper. Now I'm reading about people having similar symptoms to mine but can they keep coming back after being off the med for a year? This thing, when it comes on, feels completely physical.What do you think? Psychological?
    JericaLily 4 Replies
    • December 1, 2008
    • 05:32 PM
    • 0
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  • You should get a blood test for MONO, it is a virus that would make you fatigued. You can get is from kissing, sharing a drink etc..
    Anonymous 42789 Replies
    • December 1, 2008
    • 05:38 PM
    • 0
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  • Hey --I thought of that because it felt just like that at first. Thing is this, I didn't get tested for Mono when I first came down with this in April 2007, but I went travelling with my bf and he came down with and was tested for Mono! I had a "relapse" of whatever it was a little bit after that, then it went away and then came back and then last Dec went away again (instantly one day). I was tested for mono later in the year and doc said I didn't have it -- though a few years ago I DID have it when I was all achy (and didn't have this INTENSE fatigue and shortness of breath stuff) and doc even said I had "chronic fatigue syndrome." Does CFS just come and go like that so you feel great one day and out of breath and exhausted the next?
    JericaLily 4 Replies
    • December 1, 2008
    • 10:56 PM
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  • @JericaLilyChronic fatigue is a poorly understood condition, definitely not a final diagnosis but only a syndrome. So, yes it can come and go and does not have a stable "behavior". Practically, chronic fatigue is an "exclusion diagnosis" and I suggest:1) you have viral blood exams for EBV, CMV, HSV, HZV, HBV, HIV.2) you have immune-system related exams (ESD, CRP, ANA)3) thyroid-gland and endocrinologic exams4) have an experienced internist to handle all the management
    tsoukase 18 Replies
    • December 1, 2008
    • 11:19 PM
    • 0
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  • Another cause of symptoms that mimic mononucleosis very closely is cytomegalovirus. CMV is very very common and approximately 50% of the population of developed countries tests positive for CMV antibodies (meaning they've had it at some point). Normally it is mild and often mistaken for the common cold or overlooked completely. In immunocompromised patients however it can be very much like mono (long term with fatigue, sore throat, fever, swelling..) Are you a college student or subject to high stress levels at work or home? (High stress levels have a direct impact on immune system strength) You may try Vitamin C to help bolster your immune system. It certainly couldn't hurt. I'd start with 500mg Vitamin C 3x daily for a week then cut back to 500mg 2x daily. Is there anything different in your daily routine between now and when you were feeling well? Any environmental differences such as different apartment, office building or diet?
    AlterniMed2008 7 Replies
    • December 2, 2008
    • 00:30 PM
    • 0
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  • @JericaLilyChronic fatigue is a poorly understood condition, definitely not a final diagnosis but only a syndrome. So, yes it can come and go and does not have a stable "behavior". Practically, chronic fatigue is an "exclusion diagnosis" and I suggest:1) you have viral blood exams for EBV, CMV, HSV, HZV, HBV, HIV.2) you have immune-system related exams (ESD, CRP, ANA)3) thyroid-gland and endocrinologic exams4) have an experienced internist to handle all the management I have had my thyroid checked and so far there's no problem there. I also don't have HIV (was tested for that in Nov 2007 when I was pregnant and again last month for life insurance application). I haven't heard of the rest of those, though. I will write them down and see an endocrinologist. I think that's a good direction to take. Thanks so much for your response and suggestions!
    JericaLily 4 Replies
    • December 3, 2008
    • 01:54 AM
    • 0
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  • Another cause of symptoms that mimic mononucleosis very closely is cytomegalovirus. CMV is very very common and approximately 50% of the population of developed countries tests positive for CMV antibodies (meaning they've had it at some point). Normally it is mild and often mistaken for the common cold or overlooked completely. In immunocompromised patients however it can be very much like mono (long term with fatigue, sore throat, fever, swelling..) Are you a college student or subject to high stress levels at work or home? (High stress levels have a direct impact on immune system strength) You may try Vitamin C to help bolster your immune system. It certainly couldn't hurt. I'd start with 500mg Vitamin C 3x daily for a week then cut back to 500mg 2x daily. Is there anything different in your daily routine between now and when you were feeling well? Any environmental differences such as different apartment, office building or diet? It's weird, I didn't have any sore throat or fever or swelling. Just intense fatigue and short of breath etc. I'll have myself checked for the CMV though! I hadn't heard of that one. I'm thinking maybe it's a stress thing -- I am a Type A personality times a million. I'm even in therapy because I'm so obsessive and driven and worry a lot. I thought maybe it was psychological but the symptoms are just so physical it's hard to think my mind could just conjure them. Like you said, I think maybe it's the immune system, and the stress/worry could be draining me and then whatever this thing is takes an opportunity. I also just got over a loong cold which started Nov 1 and I'm still not 100%. I remember now also when I got this stuff last year I was also getting over a bad cold, but before that -- the initial one that was the worst, I am not sure if I'd been ill. BUT I have to say that when it first started, my sister was in the hospital after having an emergency c section and we thought she might die and the baby was 3 lbs. so my whole family were extremely stressed. Plus she came to live with us with her 3 kids (the new baby plus a 1 yr old and a 11 yr old) in our tiny apartment because CPS put her on a "safety plan". It was EXTREME stress -- ZI don't get along with my sis, she's a leechy person and irresponsible. So while I didn't want her to die, I also couldn't handle getting through all that and living with her, too. A therapist I saw at the time said my body was "Protesting." Vitamin C sounds like a good idea. Thank you so much for your response, I appreciate your ideas on this!
    JericaLily 4 Replies
    • December 3, 2008
    • 02:07 AM
    • 0
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  • Jerica- Alright, so it does sound like you have a fairly high stress level and you mention that both times this has gotten worse has been directly after an illness. Although there are elements of chronic fatigue syndrome present I'd be hesitant to classify it as such without more of an exam. I do agree with previous posters that you should be tested for EBV, CMV and have an endocrine panel done. The common test for EBV (the virus that causes mononucleosis) is the monospot. An alternative to the monospot is testing for VCA-IgM, VCA-IgG, EA-D & EBNA. The VCA-IgM & VCA-IgG & EA-D test for current EBV infection while VCA-IgG & EBNA test for previous EBV infection. This alternative test although more costly is also more accurate and helps to differentiate between EBV and CMV or other infections with similar symptoms. Considering that you're going to be requesting CMV & EBV testing they may forgo the monospot completely and go straight to the IgG/IgM/EA-D/EBNA. You mention that you're having trouble sleeping even when tired. Have you tried a sleep aid of any type? Proper sleep is crucial for proper healing of injuries and infections. You should strive for 6-7 hours of sold sleep per night. Although some people dislike sleep aids and believe that the sleep they induce is less restful it might be worth trying. You could also try dedicating a half hour before bed to an activity you find relaxing. Try reading and sipping a cup of chamomille tea before bed or an herbal sleep / relaxation aid like Kava. I would ask if you've seen an ob/gyn recently but there wasn't any indication in your post as to your sex. ;-) tiredbird- You mention that you've already had tests for EBV and from the fact that you said your white cells were low it sounds like you've had a CBC (Complete Blood Count). Typically if you had an infection your white cells would be elevated. I would suggest a thyroid panel. Alot of your symptoms could be hormone related. When was your last gynecological exam? It may be worth bringing up to your OB/GYN doc. --AlterniMed2008
    AlterniMed2008 7 Replies
    • December 3, 2008
    • 03:04 AM
    • 0
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  • Have you gained any weight? Have you heard of Cushing's Disease? It's rare and doctors often misdiagnose it and in the process treat only the symptoms. Some of the symptoms are:-extreme fatigue-muscle weakness-high blood pressure-irritability, anxiety, and/or depressionCheck out this link for information on Cushings.http://www.endocrine.niddk.nih.gov/pubs/cushings/cushings.htm
    acsproul 10 Replies
    • December 3, 2008
    • 07:34 PM
    • 0
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  • Get your doctor to do a blood test for thyroid - hypothyroidism and also ask him to check for auto antibodies, hypo thyroid problems cause very bad fatigue - I could hardly walk to the bottome of the garden until I was put on meds. if you've got auto antibodies - autoimmune problem that's another reason why you could be so tired.
    maggiemay 68 Replies
    • December 4, 2008
    • 11:08 PM
    • 0
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  • I was just looking up something for a friend because she has similar symptoms and found this web page. http://www.medic8.com/healthguide/articles/chronicfatiguesyn.htmlMany of your symptoms are listed here.
    Anonymous 42789 Replies
    • February 9, 2009
    • 07:03 PM
    • 0
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  • Please please please get this nowI know these symptoms VERY well - and I think you should get tested for a GLUTEN sensitivity - Seriously .... i had the sweats - short breath - dizzy - esp after eating bread or pasta - anxiety also - GET allergy TESTED and then report back to my health communityhealthybusiness.ning.comthanksChrisI've had something like this off and on for 1 and a half years. It seems to go away when I really stop concentrating on it and when I remember it, it comes back to varying degrees. Very weird. Symptoms have included:-- extreme fatigue-- shortness of breath-- pounding/racing heart-- extreme muscle aches with little exertion-- feel like can't get a deep breath-- sometimes can feel faint-- just walking a few feet makes me exhausted and out of breath-- can't walk into a store and stand still without needing to sit and catch my breath from heart poundingI'd have this odd fatigue just make me feel like I can't catch my breath, like something's going on in my throat down to my stomach. Stomach muscles feel tight like I'm unconsciously stressing them.This has lasted for days, weeks, months then goes away for weeks and months!!Seems to be controlled by thinking or not thinking about it. I have had these tests:chest x rayscountless EKG'sat least 2 echocardiogramsbloodworkorthostatic testingran around with osat monitor on my fingerholter monitors30 day event monitorGonna get EGD to check my throat and stomach next (I have GERD.)Cardio doc can not find anything wrong with me. Regular doc says anxiety. (I have a LONG and SEVERE history of Anxiety disorder and Panic/OCD and Post traumatic stress plus major depression.) I have seen 2 cardio docs, and neither found any problems. I even saw them in the midst of this stuff. And surprisingly, STRANGELY, it all just up and disappeared one day and didn't come back for MONTHS. (!!!!)I should add that I had been on Lisinopril for about a month or so just before this started. I'd switched from my regular Monopril (for high blood pressure) which I'd been on successfully for a few years because Lisinopril was cheaper. Now I'm reading about people having similar symptoms to mine but can they keep coming back after being off the med for a year? This thing, when it comes on, feels completely physical.What do you think? Psychological?
    interslice 23 Replies Flag this Response
  • get off the sucralose, splenda and aspartame- found in diet sodaseverything really, even in gum and children's vitamins : \read labels and do not eat this stuff anymore it is poison and it sounds like you have most of the symptomsread about them on the internet check the symptoms for each one- disregard the Industry(company who made the product) advertisements on different sites that tell you they are safe - there are enough testimonials and people who will tell you on facebook groupsyoutubeand google that they were harmed by them and know because they were where you are and stopped eating them and now are better.Trial and error, they learned what was causing them these problems- now you know too!
    founddog 188 Replies Flag this Response
  • Im 26, i work dam hard and get highly stressed, although people dont know how stressed I am (I dont really show it).Anyhow recently i had a very bad flu, I worked through it while doing 18hr days at work, on the Panamax (panadol with codine) just to get thru it. I did this because I had my first new challenge after being promoted at work and wanted to nail it. I was interestate for 4 days while this was going on. After my big presentation i flew back home (Melbourne->Sydney), and was utterly dead, took the friday off work and slept, tried to recover in bed till the monday. Thought i was getting a bit better on the Monday, so went to work. Worked all week cuz my sore throat went, so did my cough and fever, but the fatigue and exetreme tiredness hasnt gone. I went to the doctor on friday and he said im just totally fatigued from working through it and said for me to do absolutely nothing but rest on the weekend. I have done as he requested but the fatigue has not felt like its even close to going away. This morning i went for a short walk, and came back and was absolutely dead after it. Ive had flu's before and have come out strong, but this one really concerns me because the fatigue just isnt going.Im going to see how i am tomorrow and goto the doctor again on tuesday if no improvement. The fact what your talking about involves stress really concerns me cuz i get very stressed.Will keep you posted.Thankyou for all the feedback on the posts.
    Anonymous 42789 Replies Flag this Response
  • How is everyone feeling now. I have similar symptoms. I noticed this thread is from july, so can anyone say if there fatigue has gone away?
    Anonymous 42789 Replies
    • November 20, 2009
    • 08:39 PM
    • 0
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  • Has anyones conditions here improved? I'm dealing with the same thing.
    sporque 1 Replies
    • November 20, 2009
    • 08:46 PM
    • 0
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  • Has anyones conditions here improved? I'm dealing with the same thing.Mine improved - here are the things i did Regular exercise and SaunasProper vitamin - pancreas and thymus supportL-GlutamineQ-Link pendant - help with tiredness the most noticeable**Colloidal Silver (never had a cold this yr - everyone i know has)I fell great and regular stay up and get 4 hrs sleep! feels ok to me!maybe i'm abusing my Q-link pendant :Pnow working on dry skin and sore eyes :) sticking with the silver to do that :):D
    interslice 23 Replies
    • November 28, 2009
    • 10:05 PM
    • 0
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  • Did you ever figure this out? I feel like I have the same thing...
    Anonymous 1 Replies
    • December 2, 2014
    • 01:34 PM
    • 0
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