FM before CFS any of you?

Discussion in 'Fibromyalgia Main Forum' started by mlrarr, Apr 7, 2006.

  1. mlrarr

    mlrarr New Member

    Hello,
    I had fibro 10 years and just got to dx of CFS about 3 months ago. When I had fibro my lymph nodes never swelled and although I was in pain and felt tired I DIDNOT FEEL LIKE THIS!!!
    I was wondering if any of you out there feel like me? Fibro was bad but both is just about more than I can stand. 8 months before I got this dx for cfs there was some days more so when my lymph nodes swell up that I just could not get out of bed. When I go to write something down- because I also have crs, cant remember s--t, I cant spell simple words. I didnot have that with fibro. Although I was tired I was not thrown in bed for days at a time. And although I was concerned about my health now I am obsessive about it!! I always think this has to be bad to feel like this you know like this has to be the end or what if this is worst than cfs. I really thought having fibro was the worst it could get but now this new dx its overwhelming.
    So does any out there have fibro first and then cfs added to it? And if so could you tell the difference?
    Thanks
    Melinda

    P.S. Do you think some days you could just go crazy with fatique, pain and worry? What do you do to get over the hump, flare-up ect........
  2. Nikki

    Nikki Member

    I have not officially been dx'd with CFS but was dx'd w/fibro in '03. Fibro was 1st, then I was struck with this bone tired feeling of death warmed over . . . the kind of tiredness you experience after major surgery. I asked my dr. to Rx Provigil (recommended to me by a friend) which he did. I do not take it every day, but you know when you wake up whether or not you will need it to help you thru the day. (If you can roll over in bed and sit up, you probably don't need it - LOL.) Most days when I need it, it helps . . . some days, nothing helps. Maybe, this is just part of FMS . . . but, it surely feels different to me.

    Take care. Hugs, Nikki
  3. mlrarr

    mlrarr New Member

  4. ouchiered

    ouchiered New Member



    My heart aches for you all. Reading all your posts is like reading my life for the past 10 years! You are not alone.

    DD in 97 with FM then it sorta went away, came back in 2003 really bad. Ever since then my doctor would refer to FM or CFS while talking to me during office visits. I finally asked him "Well, which one do I have FM or CFS?? His answer was he felt they went hand in hand. I was not surprised because I knew more was going on than just FM.

    I think some of you are correct when you say the foggy head seem be come along with the CFS. When I'm in a really bad flare my head is so full & weighty. You know what I mean. I've never had sore glands though.

    A bad flare seems to build up to a peak of pain & fatigue which you think if it gets worst this is the end THEN it will let up! It's like I'm being tested for my ability to survive. I do take Flexeril or Xanax pain killers do not faze it.

    I wish I had the answer for all of us.
    Just hang on. GG

  5. KMD90603

    KMD90603 New Member

    I don't post here often anymore, I used to post quite frequently a couple years ago. Anyway, I was first diagnosed with FM in october of 2003. My primary doc had originally mentioned CFS, and sent me to a rheumy. The rheumy said FM and began to treat me for that. After months of dealing with bone-crushing fatigue, low-grade fevers, sore throats and achiness, my primary doctor referred me to an infectious disease specialist. This guy was great. He had me keep a log of my fevers. In fact, I was running a low-grade fever when I came in to see him. He immediately diagnosed me with CFS.

    Since then, the FM has gone into what I call remission. I have days, especially with the weather changes, that I get pain. But it's not constant like it was. If I've been up and running around all day, I start to feel the pain. but it's nowhere near as bad as it was when I was first diagnosed.

    The CFS, on the other hand, is very much up and down. I'm 24 year old who is married with one child and I'm also a nursing student. So, often times I find myself just pushing through the fatigue and flu-like feeling so that I can continue with my life. Sometimes it works, sometimes it doesn't. Unfortunately, we don't have the money for me to spend on trying all these different treatments. I exercise when I can, but it's difficult because...with what little free time I do have, I like to try to rest. Recently, I've been in the worst flare yet. It began after a viral infection where I had a fever of 101 to 103 degrees for 5 days straight. I was so sick, and it's taking me a while to recover CFS-wise. Now, I'm sick yet again with some respiratory infection, and I feel like I'm getting kicked while I'm down.

    Yikes, this is getting long. Anyway, some days you do feel like you will go crazy with all of this. Today is one of those days for me. But, I try to lean on my family a little more in times like this. My husband is usually pretty supportive and tries to give me as much extra time to relax as possible. Just try to keep your chin up and remember that the flare-ups won't last forever. I know it seems like they will in the beginning, but eventually they subside. And as you go along, you learn how to better manage your fatigue. On most normal days, when I'm not flaring, I've learned that if I can even just get an hour nap before going to work or doing homework or whatever, it'll help me get through the rest of the day.

    Gentle healing hugs,

    Kim
  6. mlrarr

    mlrarr New Member

    Thanks to everyone that replied. Its nice to know I am not crazy!!! LOL

    Melinda
  7. cerise

    cerise New Member

    do you think there's a difference between CFS & FM?

    I was diagnosed with ME/CFS in 1987. I was first dx with FM in 1996 but was told it dated back to a car accident in 1993.

    The pain is horrible from FM and so is the IBS. Beyond horrible really; but CFS has robbed me of my mind and I miss it! The laundry list only begins there.

    People (& doctors) seem to respond "better" to FM, whereas saying you have CFS to anyone can guarantee complications & worse.

    After 19 years of ME/CFS & 10 plus years of FM, if I had a choice between the 2, I'd take FM in a heartbeat.

    But that's just my personal opinion!


  8. mlrarr

    mlrarr New Member

    I would take fm in a heartbeat. I only thought it was bad!! This stuff is way worst. I know I have lost my mind, health, strenght, everything!!!!!!!
    I thought the world had come to an end with fm but now I just cant seem to function. The docs would try to give meds for depression for fm and I would say no thanks *I will deal with it but now---bring it on!!! LOL
    I go back and forth with I can do this to stop the world I want off!!
    Anyway to all that posted thank you so much!! At least I know I am not insane......

    Melinda
  9. lovethesun

    lovethesun New Member

    I am for the most part bedridden,I'm exhausted from not sleeping.My pain runs weeks at a time when it is severe.I mostly use a wheelchair.A cane if it's a short distance and a good day.I am often foggy headed

    .My legs and hips buckle all the time.I do nothing.My husband does all the housework and cooking.I have sensory overload everyday.I don't have fevers(at least I don't think so as I've aways had low temp) and no swollen glands.I was diagnosed with fms.What do you guys think?Linda