Why does CFS make you feel ill/flu like sometimes?

Discussion in 'Fibromyalgia Main Forum' started by shanwill, Jun 4, 2006.

  1. shanwill

    shanwill Member

    I've been bedridden for a couple days now with no end in sight and this seems to be part of the pattern. I've not really over done it prior, or caught a bug - but my body feels like it's completly ill. (no energy, achy, thick foggy head) My new 'normal' is about 6/10 daily functioning, but when it's like this I'm a 1/10 and it can lasts for days sometimes weeks.

    Anyone know what causes this and how to recover quicker from it?
    blah - i HATE! this illness!!!!

    Thanks for any advice,
    Shan
  2. FM_DD

    FM_DD New Member

    Shan, I've only been diagnosed with FM but the last 4 days I have felt like....well....you know how you feel right after you go up a flight of stairs? That is how I have been feeling most of the last 4 days.

    I have an inground pool and I have only been it in once (just opened 2nd week in May). I don't even feel like going out there on my GOOD days.

    We don't deserve this. Just keep coming on back to this board, its what I've been doing the last few days (when I can drag myself out of bed to the computer down the hall).

    Good luck! You're not alone.

    Cathy
  3. HAPPYDOGSUZ7777

    HAPPYDOGSUZ7777 New Member

    Shanwill,
    I also have been diagnosed fms not cfs but I think I may have both.
    I go through times of total exhaustion and flu like symptoms
    then there are times I have energy and feel semi normal.
    I am on 2 pain meds a day and 1-2 flexeril at night.
    I really don't know why I feel the way I do I've kind of given upp trying to figure it out cause there seems to be no rhyme or reason. I understand your frustration I think most of use share it.
  4. WendyC

    WendyC New Member

    I am on 'From fatigued to fantastic' available at prohealth, and two mitochondrial support supplements,milk thistle, omega 3, C&E as well as thyroid, adrenal, estrogen and progesterone creme per the FFC. I am pretty high functioning now although not 'normal' in any sense. For instance. My husband just got into an ATV accident. 4 fractures. The first two nights I barely slept, he screamed so much. The last two he wakes me up twice for pain medications. I have to do all the chores on our farm and I work full time. Not to mention that my husband has to be driven everywhere and cannot dress himself. So if I haven't flared yet.....

    wendyc
  5. Smiffy

    Smiffy Member

    I would describe my CFS/FMS as permanent (nearly 20 year!) flu without the temperature.

    Th best way to cope with a flare seems to be to rest.
  6. KMD90603

    KMD90603 New Member

    I have CFS too, and I hate that feeling. Sometimes I will run a fever, other times I won't. But regardless of whether or not I have the fever, I feel sick and flu-like. My joints ache, I feel so weak and tired, my glands get swollen, my throat usually hurts, headaches, etc. Yesterday was real bad for me. I made the mistake of going out with a friend the evening before, and didn't get home until 1:30am. I spent the entire day on the couch, and I could barely get up. I was so achy and felt like I had the flu. Today is better for me.

    My advice to you is to get plenty of rest. I felt awful yesterday, and I had to have dinner at my parents' house yesterday. I got home and fell asleep on the couch for about an hour and a half. After that I was able to function again. I also took a couple of Ibuprofen for the achiness. I honestly treat my CFS flares just as I would with a virus...rest and Tylenol or Advil for the fever and aches.

    Gentle healing hugs,
    Kim
  7. jane32

    jane32 New Member

    I have had cfs for 18 months and it began like the flu and has stayed that way. I don't have pain but feel very sick all off the time. The days that I feel the worst I have fevers of 101 and I just lie around. It seems to come in waves so I just take it easy those days and i have hope b/c I knwo a good day will eb comign soon. I guess I have just learned to manage and accept it as much as it sucks. My fever cycles come after ovulation and last 10 days...and still the drs. tell me it is not hormonal! Just hand in there I promise it will go away soon and you will feel "your normal"! My chlls are not as bad since I began treatment at the FFC 6 months ago but I still get them. It makes it very hard to plan when we can't predict how we are going to feel that day!
  8. Gladiatorgirl2

    Gladiatorgirl2 New Member

    I was diagnosed with Fibro when I was 25. I'm now 36 years old and I feel like I constantly have flu like symptoms. Now than I'm getting older the symptoms are 10 times worse and more intense. I run a fever all the time, have headaches every day, I'm tired and ache all over. I have trouble walking and just getting up and down from a chair is hard work. I wish there was some encouraging words for you, but I've been going down hill every since I was diagnosed 11 years ago. I miss a minimum of 1 to 2 days a week at work. I'm always worried I'll get fired because of my illness. Its just depressing.
  9. Mikie

    Mikie Moderator

    First, our immune systems do not function properly. They may respond as though we have a bug when we do not.

    Also, in studies, the majority of people with our illnesses have from one to seven chronic stealth infections. They hide out from our immune systems and don't usually show up on tests. They can, however, elicit a weak immune response, including aches and pains, fever, sore throat, headache, and swollen lymph nodes.

    Love, Mikie
  10. shanwill

    shanwill Member

    thanks for feedback. really helps to know i'm not alone in all this.

    am hoping after a goodnites sleep tonight will start inching back up.

    shan
  11. Empower

    Empower New Member

    I felt that way yesterday 6/5. Had a slight fever, just could not move.

    I get this every 2 months or so.... Just feel awful and jsut need to lay in bed

  12. Mikie

    Mikie Moderator

    The Herpes-Family of Viruses never go away; at best, they lie latent in our bodies. If we overdo it or get another virus, they can reactivate. Same with Lyme, Mycoplasmas, Syphillus (sp?) and Malaria.

    Dr. Nicolson replied to my e-mail about the Mycoplasmas and said that cysts deep withing the body's tissue can reactivate when we get run down, even years after we think we have gotten rid of the infection.

    Love, Mikie
  13. Smiffy

    Smiffy Member

    That's interesting Mikie, thanks
  14. cherylsue

    cherylsue Member

    Cytokines are the substances that are body produces to halt the infection. The also make us feel very sick. They also play out in our brain and injure some tissue there which affects our concentration, etc.

    Halt the infection, heal the brain, feel better.

    CherylSue
  15. upnorth

    upnorth New Member

    Flulike fatigue, aches, fevers, sore throat, lymph pain is what cfs/m.e. is all about for me. I've been ill over 4 years (with ups and downs ) and like many folks mentioned here, the only thing I've found that really helps is rest. Even if I can't figure what triggered the flare, resting is the only thing that helps me improve (even if it's from very sick to sick).

    That being said, I'm in a remission now. I'm basically 7 out of 10 for a good portion of the day at least a few days a week. My remission has almost been 6 weeks now of feeling like a semi-normal person some of the time (after spending portions of the summer bed-bound) - so there is hope!

    Because I've had two significant remissions (two falls ago and this fall) and a few little ones, whenever I'm laying in bed for weeks with the never ending flu, I remind myself that since there's been remissions before, there probably will be again....

    AND people do improve with this illness even after years of being sick ( I know people who even returned to work after 1, 2, and 15yrs of illness at least part-time).

    Rest-up, Take care of your self. I hope this gives you a little hope. Hang in there.

    upnorth
  16. shanwill

    shanwill Member

    thanks for response. i looked at your bio and was surprised at how similar your lifestyle was to me! (before CFS) and nice to see a fellow young canuk.
    great to hear you are improving - lets hope this pattern holds. have you done anything in particular to get where you are now?

  17. upnorth

    upnorth New Member

    Yes, we did have very similar lives prior to cfs. I actually lived in England for a year and was engaged to a Brit! I was an extremely active, fit, social person.

    Did you ever try seeing Dr. Bested in Toronto? I noticed you had a post about it a while back. She's probably the best thing I did since getting ill. She doesn't really offer any magic pill (b/c there probably isn't one yet) but she understands cfs/m.e. better than any Dr. I've met and she was great about helping me to get disability and really pace myself and rest. She helped me take this illness seriously.

    Mostly she just validated that what I'm going through is very real (which I know, but it's great when you're Dr. knows it too).

    I was living with different friends and family members in S. Ontario when I first started seeing her.
    Now I live much further away (am working on a part-time master's of Ed.) and so I only see here a few times a year.

    Why am I in remission? Well for some reason I always improve in the autumn. I know it sounds weird, but it's happened to some degree for 4 years in a row now.

    I think that all the resting and pacing I attempt (fail sometimes) does help. I'm also on quite a few supplements and vitamins, an allegy free diet (Dr. B sent me to an allergist), and I try to avoid all chemical additives, sugar and preservatives.

    That being said, the supplements an diet haven't kept me from relapsing in the past. The things that seem to contribute to relapses are doing too much, infections, flu season and spring.

    I've tried valtrex a few times and it seems to alleviate a few of my symptoms, but isn't a cure.

    I wish I had better advice for you besides just hang in there. Have you noticed any times of year that are better for you? How about any improvement overall?

    Best of luck
    upnorth
  18. ANNXYZ

    ANNXYZ New Member

    please keep in mind that though you may never remember seeing a tick, you may well have lyme disease , which can be transmitted by biting flies , regular flies , mosquitoes and fleas .

    The only relaiable test for lyme is Igenex Labs western blot .

    Many of us here were shocked to find that we have lyme
    and that the symptoms of lyme are IDENTICAL to FM and CFIDS .

    I did not have joint pain , just extreme flulike feeling 24/7 with chills off and on, terrible fatigue - sick all over feeling . This went on for ten years before DX .

    Please read more about lyme at ilads , lyme disease org .

    Blessings to all of you !
  19. shanwill

    shanwill Member

    you sure are up north eh! well done though on going back to school at this time in your life - no less to get your masters - impressive! i wish you success. on days like this i couldn't even imagine it with the brain fog the way it is.

    i am finally going to see dr bested this oct. and am really curious. i had to see her naturopath 3x first so now i am in. what a nightmare though, i can't drive long distances anymore so have to take the train and then bus and it takes 5 hrs total. i usually try and stay with mates in t.o. to break things up abit. i'm just hoping she may be able to determine WHAT is causing all this crap.

    i've noticed baby steps of improvement over the years, first year being the worst. now i find the things you also mentioned are what helps best. i relapse when seasons change, get bugs, over do things etc. that's interesting about you getting better in fall - wonder if it's something enviromental? weather? allergies? for me i find summer better than winter but that's about it.

    it's nice to chat with someone from here who 'gets it' though. i've been the first person in my family and friends to get sick - and so young - so it's hard to relate or be able to vent.

    curious - where did you live in england? we lived in kingston-upon-thames (just outside london) and i worked in the travel industry there. before all this DD i was actually wanting to get into what you did - i loved that stuff!!! it must have been such a blast to get paid to do what you love.

    here's hoping we can both do it again one day.
    shannon

  20. upnorth

    upnorth New Member

    I saw Tracey (Naturalpath) too and I still see her - I find her pretty nice/supportive and some of her treatments have helped a little. Dr. Bested does run every test in the book on you at your first appointment which is nice, although for me, she didn't find much. COnsistantly I have some lymphocyte markers that are low, an elevated epstein barr, low iron (and my GP finds my neutrophils drop with my flares)

    YES! I agree the travel was a lot to take. I kept trying to drive myself, but eventually had a friend or family member drive me. I also stayed w/ friends in T.O. to make the trip more doable.

    As to my past career, it was nice doing what I loved for a living (although working with teens 24hrs a day traveling through wilderness areas could have trying moments too!).

    I lived in the Lake DIstrict the year I was in England and worked for an Outward Bound school there which was really amazing. I was on a working holiday-maker visa.

    Not a day goes by that I don't miss teaching, leading trips, training staff, etc, however, I've try hard to live in the moment and I try not to let myself morn the past too much or worry about the furture.

    As for trying some University - it's actually a good fit for my situation as Univeristies in Ontario are pretty accomodating if you have a disability. I do all my reading at home in bed, all my writing at home on the computer, and even the Univeristy Library I can access from home to do most my research. Last semester besides class once a week, I barely left my appartment.

    That being said, I'm very lucky that even at my worst, I don't have the serious brain fog most people with cfs seem to get. I do get brain fog, but it's more of a minor symptom for me. I also get occational bouts of vertigo that can last a month or two, so here's crossing my fingers I don't get one of those this fall as I'm trying two courses - last winter I only did one, and last summer I was too sick to leave the appartment much.

    You mentioned you work a little part time?
    What number would you say you are on the 'functional scale' Dr. B. uses?

    I rarely drop below 4 and I don't think I've had a day above 7 since becomming ill.

    Well, I hope you pull out of this bout soon. Did you initially get an infection that started your cfs/m.e?

    Take care