Does anyone here suffer from chronic flu like symptoms?

Discussion in 'Fibromyalgia Main Forum' started by mindofasian, Oct 27, 2006.

  1. mindofasian

    mindofasian New Member

    I know that seems like an odd way to initiate conversation but I am desperate for info and have no one else to talk to about this.I found this board by researching articles on CFS;it seems that's all I do lately...

    Just a little background info:I'm 25,female,vegan and struggling to get through college right now.I originally planned to get my degree in physical therapy but I don't think I have the mental and physical endurance to withstand 6 more years of schooling.I decided to go for a PTA degree instead and even that is challenging.

    I haven't been officially diagnosed with CFS but everything I've read so far makes me think it's the culprit of my constant colds and bouts of the flu.I have achey burning muscles,low grade fevers,congestion,etc.It feels like my bones ache as well and I catch everything that's going around no matter how well I eat or how much I sleep.I used to run 5-6 days a week and lift weights but I'm lucky if I get one day of activity in now.

    My doctor thinks I'm crazy;I've been tested for epstein-barr,lyme disease,mono,lupus,hepatitis.I've had my thyroid tested and a WBC count as well.I've had brain scans,x-rays,stress tests and nerve conduction tests.All of them were normal,yet I still get ill.So,my question is:how many tests are necessary in order to pinpoint this? It's really quite depressing to be sickly and isolated most of the time;my only social interactions occur at school.Any advice would really help,thanks for reading.
  2. llama

    llama New Member

    Welcome to the Board,

    I'm relatively new at posting to this board. Hope you'll continue to post and find support, acceptance and humor.

    I was dx'd with Fibro. about 3 years ago from a Rheumatologist (actually knew that I had it many years previous to that but wanted an official dx. because I needed to apply for disability).

    I haven't been officially dx'd with CFS, however, I fit the criteria. I have flu-like symptoms about 80% of the time. Very weak, very sore, low grade fever, sore throats,
    headaches, chronic EBV and of course the biggie..severe exhaustion (especially post-exertional malaise).

    I have had CFS symptoms sporadically for several years, but they have increased in severity in the last year.

    I would suggest, checking out the extensive resources here at this site. Also have you considered being evaluated by an Infectious disease doc?

    Sorry, I probably have not been a tremendous help, since I
    am just beginning on the road to being dx'd with CFS myself. There are many people, on this board who have outlined exactly what steps they took to be dx'd and then what has helped them remain as funcional as possible.

    Good Luck...let me know how things go for you....Jill....
  3. mindofasian

    mindofasian New Member

    Your symptoms are scarily similar to my own and mine have also increased in the past year.I actually went to the doctor again today because of a severe sore throat.He told me that there was absolutely nothing wrong,no redness,swelling,etc.

    I haven't been to a specialist yet but I'm seriously considering it.

    Thanks for your input-at least I'm not alone!I hope you feel better.
  4. tlayne

    tlayne Member

    I don't have much energy to respond, but I did want to say welcome. Yes, I feel like I have the flu all the time. It is like my body is continually trying to fight off something, but I rarely get anything full blown (flu, cold, etc.)

    I am sorry honey, you are way too young to have this dd. However you are the age that I was when this dd exacerbated for me. Have you read, Suzanne Summer's book, Ageless? It's about hormones, and it is very informative. Just a suggestion. Hugs, Tam
  5. lenasvn

    lenasvn New Member

    Howabout the test results (labs). Lyme- did he run an Elisa for Lyme? If he did, you might want to do it with Igenex. I recommend you to do some reading on the Lyme board as well, there is tons of info there. CFS can start at any age. I'm glad you went here for support!

    I think you should go doctor shopping, find a doc who believes in CFS/FM. Ask for a referral to an Infectious Disease Specialist. Be strong and know what to ask for. Don't waste time with a doc who makes you feel like he thinks you're crazy. He is your employee, not the other way around. if you had positive EBV results, you should get re-tested. It may reveal chronic EBV. Once upon a time CFS was called Chronic EBV.

    Just some thoughts,

    many tired hugs
  6. Lolalee

    Lolalee New Member

    Oh, it makes me so sad to see yet another person suffering with these symptoms. Sounds like CFIDS (Chronic Fatigue and Immune Dysfunction or Chronic Fatigue Syndrome) to me. But, you really need to find a doctor who is knowledgeable about this...good luck!! Not too many doctors out there who can least not in my area. I would suggest that you call and get information before wasting your time with an appointment that could be disappointing. Call your local hospitals or University hospitals. Click on "Doctors" tab at the top of this page for more info.

    I have FMS (Fibromyalgia) and CFIDS. I have chronic sore throat and low-grade fever and body aches, muscle pain, horrible fatigue and malaise. Since you are still young, the earlier you get a diagnosis and start taking care of yourself, the better. If you wait and push yourself too much, it could do you much harm.

    Bless you,

  7. abcanada

    abcanada New Member

    I too also always describe the pain I'm in to my doc as 'Having the flu ALL the time'. Constant body ache, migraine, nausea, diarhea, fatigue...I could go on, but too tired tonight. Wishing you all better health!! Laura
  8. tinktink

    tinktink New Member

    Hello and welcome to the board. Yes I have constant flu like symptoms. You will find lots of info and support on this board. I would also go to WebMD and look at chronic fatigue syndrome and look at the symptoms there. They are very much like you describe yours are.

    As far as pinpointing a diagnosis it seems there are many different opinions out there from different doctors. Eventually what it will probablly come to is after you have done a lot of research and asking questions you are going to have to decide for yourself by what your body is telling you.

    It is terribly hard getting diagnosed with chronic fatigue syndrome and fibromyalgia. I spent 17 years thinking it was just depression. One of the things I have learned is about 70 percent of people with cfs also develop fm.

    When I was first diagnosed with fm a few months ago it was really hard for me to accept the diagnosis... I thought for sure it was something else. Now I am at a point where I accept it and am just trying to learn all I can so I can at least feel like I am proactive about trying to deal with it. I have had to make adjustments in my life to deal with getting by day to day. I watch sports now instead of playing because I just cant physcially do it anymore. I have a handicapped placard because I can only walk so far before I just cant go any further. I love to shop so I ride the little carts where they are available. I run one or two errands instead of a whole list at a time... etc.

    Just keep reading the posts and take advantage of the search at the top of the page. Hope you find some answers and support here..... Best Wishes Diana
  9. Gothbubbles

    Gothbubbles New Member

    I was a vegan for six years, and I wonder if you're getting L-carnitine in supplement form?

    It's an important component for your body to make new ATP (energy chains) that you cannot get from non-meat sources without supplements. It might not be related at all to your health, but it's something that you absolutely need. I believe not getting L-Carnitine contributed to an heart condition.

    And to answer your question? I've been sick with CFS for 6 1/2 years now (I am the same age as you, 25!) and I have body aches, headaches, and lymph nodes like golfballs. I work 2 4-hour shifts a week at a tiny gamestore and I spend most of my time seated. If I did something crazy (like, say, work 8 hours) I'd be in bed for days. Many days I simply cannot rise. I'm like a vampire! I never leave the house.

    I really hope what you have is something else that is treatable, I'd hate it if you had to live this nightmare. A lot of websites say CFS lasts a few months, and sometimes a few years. Just ask around. A lot of people here have been sick for YEARS with no remission, never a day where they feel human. Those websites are hooey. Learn as much as you can early on, don't feel like a jerk for asking for more tests! If your doctor won't help you do what ever you can to get one who will, You have the best chance if you treat yourself at the beginning.

    How long have you been sick?
    [This Message was Edited on 10/27/2006]
  10. chloeuk

    chloeuk New Member

    Have you had your vitamin b12 levels checked...vegans commonly suffer with a defiency of b12 so it would be worth looking never know it could be the answer.
  11. Rosiebud

    Rosiebud New Member

    there arent any tests for CFS. The doctors do the other tests to rule everything out. Your doctor isnt very clued up with whats happening and I'd go to someone else. It sounds to me like you do have CFS and though there's no cure, its good to at least have the support of your doctor.

    If you do have CFS then exercise can make you worse so be careful. There's loads of info on this board.

    I know what you mean, it's a very isolating illness, it can come in waves, you feel not so bad some days, other days you're flat on your back.

    I hope you keep coming here, you will find a lot of support.


  12. blonderescue

    blonderescue New Member

    There is no known test for CFS but I reckon you know when you have it.

    I have had it for 10 years or so.

    I went through many colds, flu, fevers, diahorrea and nausea/vomiting.

    I was asking my body to do more than it could at the time.

    I hope this helps

    PS> since I sleep better (meds) I have improved heaps.


  13. mindofasian

    mindofasian New Member

    Thanks for your welcomes and advice.I'm definitely going to look into finding another doctor.I have been going to the same place for years,usually every few months,with complaints of flu like symptoms.They run tests that come out normal and then act like I'm insane or depressed.I don't feel like I have depression though and I don't really appreciate them acting like I'm a hypochondriac.

    gothbubbles,I don't take L-carnitine but maybe I should look into it.I take a multivitamin and a b-12 supplement.I had my b-12 checked last year and it was pretty high so I thought I was okay.In the past few years I've been getting these bouts of 'flu',usually during the winter months,but especially when I have a lot going on in my life like school,work,studying.It's like my body can't handle normal everyday things and then I'm struck down with fevers,lethargy and muscle aches.

    Oddly enough,last march I'm quite positive that I did have the flu-it lasted for about 2 and a half weeks.I should have taken off work but I had student loans to pay and kept pushing myself to go in.Needless to say,I nearly passed out at work because of the fever/muscle/joint pain.I got antibiotics from my doctor even though I knew they wouldn't help in the long run.I seemingly got well,started seeing a naturopath and taking tons of supplements.He told me I had low blood sugar and an underactive thyroid in spite of conventional medical tests.He also mentioned an overgrowth of candida and told me to lay off fruit and anything with extra sugar.Cutting out the fruit really did seem to help and I didn't feel like sleeping at 1:00 in the afternoon anymore.However,I started school this august and took courses over the summer as well.I have dragged myself into school with fevers over 100 because I don't want to admit defeat and give in to whatever is plaguing me.

    I do feel better when I have a minimal amount of things to do.It sounds absurd but working AND going to school like a normal person is just too much and makes the pain much worse.I will most likely be quitting my job while I'm in school because there isn't an alternative.

    The inability to exercise is what freaks me out the most because I'm only 25.This is something that started in the last 6 months after I started seeing the naturopath.I would go running and wake up the next day with intense muscle and neck pain,fevers,etc. It just doesn't make sense to me,I wish I knew what triggered this in's so upsetting and unfair.
  14. mollystwin

    mollystwin New Member

    Your story sounds so much like mine! Except I'm a LOT older than you. When people ask me what CFS is like I tell them it's like having the flu everyday. I catch everything too and feel worse in the fall through winter. Just recovered from pnuemonia. Had it for six weeks! Still off work but returning in two weeks I hope!

    I used to run and do weights too. Can't run anymore, but can still do some lighter weights for short periods of time. The thing about exercise is you can feel good while you are doing it and even after, but the next day you feel terrible! That is called post extertional malaise and is a classic sign of CFS.

    Did your naturapath do a test for candida? There is a blood test for this which indicates that I have it. I feel much better since treating this too. You mentioned he gave you lots of supplements. If he suggested antifungals, I would suggest to take them. And stick with the diet. It's hard but it helps. Takes a long time though, months maybe even a year or more.

    I would also like to recommend co enzyme Q 10 as a supplement if your dr didn't already. Because you are a vegan, it might be difficult to get this from your diet. That supplement along with ribose and NT factor may help you. Many of us with CFS take lots of supplements. Those three helped me the most.

    good luck to you!! and welcome to the board. There are many good friends here and lots of info!
    [This Message was Edited on 10/30/2006]
  15. Lappe

    Lappe New Member

    I would suggest having a sleep study done....many doctors now feel that CFS and Fibro are sleep disorders. Also have allergy tesing done.
  16. PepperGirl52

    PepperGirl52 New Member

    I have both FM & CFS, and I feel like I have the flu most of the time. But it's mostly with body aches, feeling like I'm on fire, etc, and having overwhelming fatigue!!

    It's awful! I am not a vegan at all, but I don't eat meat all that often anymore. It just doesn't appeal to me much for some reason.

    I don't get fevers, or sore throats much, nor do I actually get many viral infections. And the weird thing is when I DO get sick, the fibro symptoms go away!

    Just thought I'd add my 2cents in....PG
  17. Summit

    Summit New Member

    Flu symptoms, sore throat, sore glands etc. are all symptoms of fibromyalgia. Sorry to tell ya...........but welcome to the club!!
  18. mindofasian

    mindofasian New Member

    Perhaps my doctor is an idiot,as many of them are,but she did some sort of pressure point testing for fibromyalgia and none of the areas she pushed on were painful to me.She told me I did not have fibro due to this.However,I do have intense aching/burning muscle pain at the base of my neck and in my shoulders,it pretty much comes and goes.

    I have two types of generalized body aches that no doctor can wrap their head around:The first one feels as if I have the flu and everything hurts-muscles,joints,bones.

    The second type is more of a dull burning sensation,almost as if there is pepper rubbed into the muscle tissue.

    I don't have this everyday though.To be honest,I have no idea what I have and I'm in the process of getting new doctors who will actually listen to me.

    The flu bouts have come in cycles for the past 6 months,usually at the end of the month.It's completely bizarre.

    The naturopath only did muscle testing and I have no idea how accurate that is.I take a probiotic tablet,multivitamin,magnesium,iodine,potassium,macroforce(which seemed to work for awhile,then it stopped),fenugreek(for the supposed low blood sugar),an herbal supplement for the thyroid,an herbal supplement for candida,flaxseed oil...those are pretty much all of the supplements that I take right now.

    I'm going to make a note to look into the sleep study,allergy testing and coQ10.Whatever it is that I have,it definitely got worse in the past 6 months-that's when I started getting sick every other week.
  19. mindofasian

    mindofasian New Member

    What exactly is it?
  20. mollystwin

    mollystwin New Member

    NTFactor is a pill that has concentrations of lipids that help improve fatigue levels by improving mitochondrial function. This stuff really works for me along with the ribose and coenzyme Q10.

    I'm glad to hear that you are taking supplements for candida as well as probiotics. There is a blood test that your dr can give you to tell if you have this for sure. Lots of us do have it but not all. I would hate for you to go throught the trouble of treating this if you didn't have it! Probiotics are good for all of us anyway even without candida, but the diet is pretty strict.

    It sounds like you have CFS but not fibro because you passed the tenderpoint test. You can have pain with CFS too but it's usually less severe. The type of muscle pain you are describing can be from CFS but is also a symptom of Lyme disease. See if your new drs will give you a lyme test by igenix to rule this out. My twin sister suffered with pain for several years before being diagnosed with lyme and is now being treated and feels much better.

    We are throwing a lot of info at you at once in our eagerness to help you! Try not to be too confused or discouraged. I hope the best for you. I hope the new drs can help you.

    [This Message was Edited on 10/31/2006]

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