Discussion in 'Fibromyalgia Main Forum' started by mindyandy420, May 20, 2008.

  1. mindyandy420

    mindyandy420 New Member

    Could you have CFS w/no fibro? I am not in chronic pain...I do sometime get the tender spots but not constant pain or aches. Just curious.
  2. landra

    landra New Member

    No fibro diagnosis at this point.

    So yes, apparently you can have one - or the other - by itself. Remember these are clusters of symptoms.
  3. mbofov

    mbofov Active Member

    I have CFIDS only - worst symptom is post-exertional "malaise" (actually exhaustion) or exercise intolerance, lack of stamina and a weak immune system. But I don't have any pain or tender points.

    Fibro seems to be more common, from what I see on this board.

  4. mindyandy420

    mindyandy420 New Member

    alot of fibro people.

    I went to dr today and she deals with fibro. I asked about CFS and she said she doesnt deal with that and gave me a funny look. Since I was in no I went with the statement...YOU LOOK FINE!
  5. Kathleen12

    Kathleen12 New Member

    Though I almost always have some minor pain somewhere, I did not test positive on the tender point test for fibro. My only complaint is the severe fatigue which keeps me couch ridden for a month or more. My pains are secondary to this and never enough to require meds for. I even broke 3 of my vertebrae 12 months ago and rarely ever have to take meds for it any more.
  6. mindyandy420

    mindyandy420 New Member

    that others dont have fibro either. Nothing against people that do...I just didnt know if this DD was one of its own. Yes I do understand I do get aches and pains from time to time but nothing like people with fibro. No tenderpoints...THE DOCTOR NEVER REALLY CHECKED!
  7. mindyandy420

    mindyandy420 New Member

    that others dont have fibro either. Nothing against people that do...I just didnt know if this DD was one of its own. Yes I do understand I do get aches and pains from time to time but nothing like people with fibro. No tenderpoints...THE DOCTOR NEVER REALLY CHECKED!
  8. Rafiki

    Rafiki New Member

    and do not have FM.

  9. marti_zavala

    marti_zavala Member

    But I got them separately.

    The first time I got sick, it was ME/CFS, no fibro issues.

    Then I relapsed in 2003 (from too much exercise) and developed FMS and other issues too.

    So, they are different and distinct.

  10. Shalome1990

    Shalome1990 New Member

    The fatigue is my main issue as well. And as you folks mentioned, I do have pain on occasion, and I hurt more than most "normal" people after simple things and after exercising (which is why I have almost stopped), but the fatigue is what holds me back. I have been diagnosed with both though because I think most people think they come hand in hand. I have joint pain (lower ankles, hips, knees) and then muscle pain that runs from the base of my skull to below my shoulder blades. I do have headaches as well as the stomach problems that are normally mentioned with fibro along with the allergy and sinus issues. There is nothing I have ever taken that has helped my fatigue...any of you had any good results with anything that helps will the fatigue? I have even been put on 60 mg of adderall a day along with 20 mg of dexedrine, and I thought my heart would beat right out of my chest, and I had the shakes and my thoughts ran wild, but I quit taking all of that because I still felt like a zombie!! The fatigue was still there! And the medicine made me have acne, along with drying my sinuses out so bad I couldn't stand it.
  11. Tawra

    Tawra New Member

    but my mom and brother only have CFS.

    We all came down with the same "flu" 20 years ago at the same time and never got well.

    Strange but true.

    I do notice a difference in my FM and CFS.

    FM is mostly muscle and tired and CFS is more flu like. With CFS I feel like I've been hit with a bat 1,000 times. With FM I feel like I've been working in the fields doing manual labor for 16 hours straight.

    The main thing that helps with CFS is sleep. If you can get the sleep issue down then you can have it under some control. When the sleep is gone then the CFS is bad!

  12. Marta608

    Marta608 Member

    I did have the tender-point check at the onset of the illness but didn't react to all of them. That was 14 years ago and now I do experience FM when I'm especially stressed or as Tawra said, when I'm not sleeping well - which is a lot of nights. Good sleep is crucial for us.

    I wish there was a board for CFS folks only. As much empathy as I have for people with FM, it seems as if they can do so much more than we can. Even they often talk of "a good attitude" or "positive thinking" on our behalf. Not that those things aren't important but when we're hard hit by CFS, positive thoughts don't do one thing except get you to bed.

    With FM, it's sometimes possible to take something for pain that will allow the person to live a fairly productive life. There is no med that helps CFS.

    I think it's really impossible to comprehend CFS-ME if you aren't experiencing it. I also think many people here have been misdiagnosed, based on what they're able to do. You can't work long with CFS, for example. You simply can't.

    Just my opinion and observation. I don't care about them any less.

  13. mindyandy420

    mindyandy420 New Member

    neurological also. Along with all the other wax and wanes that come with this DD. ARGH.....Yes I too sometimes get the aches and pains...nothing like the Fibro people do. I do feel for them.
  14. jlbean10

    jlbean10 New Member

    I think it is so frusterating...I was just diagnosed with CFS. Doctor said I have fibro too? I just feel like I have the really bad flu. Cant get out of bed. Is this you too? Does your head feel like you took to much cold medicine or like sinus infection? I am looking for more info and people like me.
  15. Mom2SixBoys

    Mom2SixBoys New Member

    I too was just diagnosed, last week. I am having a hard time adjusting to the feeling of being drugged. I was diagnosed with CFS and Chronic Pain Syndrome. I did have constant pain until I went on Lyrica. Now it is the fatigue and brain fog that are driving me crazy! This message board is difficult to use! How do you keep in touch with specific people? Would love to keep in touch with people in the beginning of this illness like me! I feel very overwhelmed!
  16. richvank

    richvank New Member


    Recent measurements suggest that most cases of CFS involve glutathione depletion and a partial methylation cycle block. This is the same disease mechanism that is present in many cases of autism. Mom2sixboys, I was especially struck by your statement that one of your boys has autism. There is a genetic component in both autism and CFS, and recent research has shown that there are many cases of mothers with CFS who have children with autism. This all fits together well in terms of genetics and biochemistry, and it is very treatable. See the references in my bio on this board if you want to read the theoretical background.

    Please read my post of July 18, 2007, on this board concerning the methylation cycle block treatment. And if you can, get the methylation panel offered by Vitamin Diagnostics. It will tell you whether you have glutathione depletion and a partial block in the methylation cycle. If you do, I suggest that you consider, together with your doctor, this treatment to lift the block. It costs less than $3 per day, and it's all over-the-counter, no prescriptions. The longer a person has CFS, the more toxins and infections appear to accumulate, and the longer it will likely take to get rid of them and to recover, so I urge you not to put off checking this out. I'm not financially connected either to this lab or to the suppliers of the supplements used for this treatment. Other people on this board can tell you about their experience with this treatment, which is only about a year and eight months old.

    Here's the contact info:

    Methylation Panel

    Available from:

    Vitamin Diagnostics, Inc.
    Rt. 35 & Industrial Drive
    Cliffwood Beach, NJ 07735
    Phone:+1 (732) 583-7773
    Fax: +1 (732) 583-7774)

    Lab Director: Tapan Audhya, Ph.D.
    (usually at the lab on Tues. and Wed. from 1 to 3 p.m., EST)

    The methylation panel requires a doctor's order and costs $300. The best way to get it is to ask your doctor to fax an order and request that the test kit be sent to your mailing address. Dr. Audhya is willing to help doctors with the interpretation over the phone.

    I hope this helps.


    [This Message was Edited on 10/12/2008]

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