Is This Fibro Pain or CFS Need Help?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Dec 21, 2009.

  1. greatgran

    greatgran Member

    I have CFS and do have body aches and muscle pain but never had aches like I have this past week and today.

    I awoke with my neck, head aching like a sinus thing but my legs ache to the bone and its like it moves around but mostly my upper legs. My muscles ache like a stinging ache from my shoulders to my toes. My vision is blurry, in general I feel so horrible that it is hard to describe. No joint pain just muscle and bone.

    The rheumy did Dx me with Fibro but my regular doc says CFS I am now thinking its both or I have some terrible disease.

    Can't sit any longer as when I sit I can actually feel where the chair has touched the back of my legs. Oh, haven't finished Christmas shopping , suppose to cook for the family. The way I feel now neither will get done.

    I am taking Bufferin and Xanax along with supplements and a decongestant. I do have darvocet but have never tried it .

    Thanks any advice or info would be appreciated.

    God Bless,

  2. DazedAndSpacey

    DazedAndSpacey New Member

    Everything I've read describes Fibro as like having the flu. You ache all over, just feel like crap. I've also read CFS and Fibro tend to go hand in hand.

    I was diagnosed with Fibro almost 2 years ago. I've had a very difficult time believing the diagnosis. Mostly because I don't seem to feel as bad as most people on this site do.

    Since people on this site seem to know more than me, I'll defer to them. But my advice would be do your research. Doctors are wrong all the time. Maybe a year from now they'll change their diagnosis for me?
  3. greatgran

    greatgran Member

    Thank you for your reply. I do hope I hear from others. I have reasearched on the net but get so confussed.

    There are some days I feel somewhat normal but lately it has been terrible along with what seems to be another darn sinus infection.

    God Bless,
  4. MsE

    MsE New Member

    I think CFS and fibro go hand in hand. I was diagnosed with CFS, but since then have days of the deep leg pain and aching in my muscles that I've wondered if it isn't fibro. But the truth is, I don't really care! All I know is that I feel achy and exhausted too darned many days.

    Once in awhile something new shows up and I start wondering, all over again, if my doc missed on his diagnosis. Then I get used to that addition to the mess and just put up with it. Actually, I think there IS a tendency for CFS to branch out and find new ways to victimize us.

    So, the very painful deep leg pain is part of my bag, too, but the sinus thing I don't have, GG. When my sinuses are infected, I know it. I haven't had to put up with a long, drawn out sinus problem like you have.
  5. kitteejo

    kitteejo Member

    I have both FM and CFS and the pain is real only most people don't believe you but we will. You won't have the pain everyday, it depends on what you did yesterday or how you slept or if you were stressed or it could just be anything. I find that two Advil helps with the pain and my doc says I can take up to six a day. Usually need two for sleep, my hips and shoulders hurt so bad at night.

    I take Xanax for sleep and sometimes for anxiety.

    Good luck to you,
    Merry Christmas!
  6. Janalynn

    Janalynn New Member

    I think you CAN have Fibro and CFS but that it doesn't always go hand in hand. I believe they are two different things. I have Fibro, not CFS.

    Fibro pain is hard to describe. It can be much worse than flu like aches. It certainly can be or feel like pain to the bone. It can even feel like joint pain, but it isn't. I happen to have pain every day, it feels like my bones are often crushed, beaten, run over, you name it. Some people's pain waxes and wanes. I was like that for years and hope to be that way again.

    I take pain medication and it sometimes doesn't even do much for my pain.
  7. kellygirl

    kellygirl Member

    For me the CFS came on with mono-like symptoms back in the 1980's. Somewhere along the line the doctor just started saying fibromyalgia, so I don't know when that started, may have been ther all along.

    I think the CFS is when the virus kiicks in as when I had surgery and ended up with the flu, bronchitis and laryngitis.

    When I started with the mono, I had the sore throat and fatigue, I really thought I was dying.

    The FMS, to me, is the bone and connective tissues hurting. I think they overlap. Maybe the researchers and doctors aren't really sure.

    Now I know my immune system is on overdrive, I do not get sick (but have pain) and my hands are all cracked and sore and I have patches of eczema that come out in the same spots. This, to me, is a sign of an overactive immune system.

    We all are different and have to learn our own bodies. Just like the sensitivity to different things is different for each of us.
  8. Nanie46

    Nanie46 Moderator


    Sounds like Lyme symptoms. CFS and FMS are symptoms of lyme along with other symptoms.

    A negative lyme test should never be used to rule out lyme. If a Dr does that, he knows nothing at all about lyme....which is about 99% of Dr's.

    Please read the symptom list on pages 9-11 and the coinfection info on pages 22-27. Many people with lyme also have other infections like babesia, bartonella, ehrlichia, etc that complicate the clinical picture.....

    other great info....

    There are thousands of people who were initially given a CFS and/or FMS diagnosis who later found out (if they were lucky) that the CAUSE of those symptoms was a bacteria called Borrelia burgdorferi.....lyme.

    Dr's often say the CFS or FMS has no known cause....well everything has a cause..... you just have to perservere and find it....often on our own, or through the help of those who have had the same experience.

    Good luck.

  9. greatgran

    greatgran Member

    As soon as I can get an appointment with a doctor I am going to discuss the possiblity of Lyme. At first I thought you had to have joint pain, which I don't have. I have been tested for lyme but with the sinus problems that never go away I am going to try to get a doc that will keep checking for lyme or some type of infection.

    Since I am unable to take antibiotics not sure how I will be treated.

    Thanks to each of you for your replies,

    PITATOO Member

    I was dx with Fibro and CFIDS a little over 15 years ago. You can pick a symptom under FMS or CFIDS and I've had it. I think the sinus infections, which I have had many may be the CFIDS side and all the aches and pains the fibro side. Either way it is just a label to maybe the same thing, just different levels in different people; just my thoughts, I'm not a Dr. but based on having them both for so long and maybe way before I had the major symptoms I fell like one, but it is just my opinion based on all my own research. That is why it is such a multi approached disease it can become a full time job just to deal with it, eating right, supplment, chiropractor, massage, exercise, trying 20 different meds until you find the right combo, no over doing it when you have a good day, no under doing it when you have a bad day. My next step in this fight, for which it is, is to try the clinic in Cleveland, I'll use all my vacation up going to so many appointments but there approach is so diverse and all empassing I have to try it. I'm only 46 and have many years left in my career. So to put it simple FMS/CFIDS - don't know if we will ever know they are different.
  11. Janalynn

    Janalynn New Member

    They say, the two have no "known" cause, that doesn't mean it's Lyme necessarily. It just means they don't know what it is yet.
    Autism has no 'known' cause as of yet.

    There are a lot of things that people can have, diagnose, know exactly what it is, how it develops, can tell you what the prognosis is etc., but don't know exactly why it happens. That in a sense can be not knowing the cause. Frontal Lobus Dementia - they know what it is, why it looks like, but really, WHY does it happen to some? is that looking for a cause? That might not be the best example, just throwing something out there.

    I always thought from reading here that CFS was when the infection part kicked in. (as someone else posted) Of course, I'm only getting that from reading here, but there are so many people who are on different protocols etc. - you don't hear about that with Fibro.
    I do believe they CAN overlap, but they don't necessarily. Of the people I know personally that have Fibro, none have CFS. It sounds like many here are diagnosed with one, then later diagnosed with the other.

    I DO believe that we will find out what causes Fibro as does my Dr. who is very positive and hopeful. I have to have hope.
  12. fight4acure

    fight4acure Member

    Hi! I don't know what to say about the pain as I'm struggling myself. Except that when it gets too bad, it is okay to take pain medication. I was afraid at first myself.

    I do have a suggestion with the sinus problem. Something I heard on both The Doctor's show and on Dr. Oz... to take some luke-warm water, mix a little salt in it, then tip the water in one nostril and let it drain out the other. I know it sounds a little bizarre, but that's what they say to do for problems with sinuses. Of course, check with a doctor if you have any further questions, I'm pretty sure they'd tell you this.

    Lyme's tests suck! I wish they had more accurate tests.


    Hope you find some relief, and some energy, to get through the holidays!